Dying, Assisted Death and Mourning. (At the Interface)

Dying, Assisted Death and Mourning

At the Interface

Series Editors Dr Robert Fisher Dr Nancy Billias

Advisory Board Dr Alejandro Cervantes-Carson Professor Margaret Chatterjee Dr Wayne Cristaudo Dr Mira Crouch Dr Phil Fitzsimmons Dr Jones Irwin Professor Asa Kasher

Owen Kelly Dr Martin McGoldrick Revd Stephen Morris Professor John Parry Professor Peter L. Twohig Professor S Ram Vemuri Revd Dr Kenneth Wilson, O.B.E

Volume 58 A volume in the Probing the Boundaries series ‘Making Sense Of Dying and Death’

Probing the Boundaries

Dying, Assisted Death and Mourning

Edited by

Asa Kasher

Amsterdam - New York, NY 2009

The paper on which this book is printed meets the requirements of “ISO 9706:1994, Information and documentation - Paper for documents Requirements for permanence”. ISBN: 978-90-420-2589-9 ©Editions Rodopi B.V., Amsterdam - New York, NY 2009 Printed in the Netherlands

Table of Contents Introduction Asa Kasher Section 1: Dying Hospice and the Intangible Wonders of Being Mary Josephine Mahoney

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‘So That’s a Completely Different Story’: Competing Narratives in the Lives of Relatives Caring for Dying Patients Jeremy Weinstein

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Death and the Sense of Self Chris J. Onof

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Political Murder on the German Opera Stage: Masagniello Furioso, Günther von Schwarzburg and Rienzi Karl Traugott Goldbach

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Section 2: Euthanasia Nurse Involvement in the Care for Patients Requesting Euthanasia Nele De Bal, Bernadette Dierckx, de Casterlé and Chris Gastmans Are We Barking Up the Wrong Tree? Questioning the Appropriateness of the Human Models for Understanding Bereavement as Applied to the Experience of Companion Animal Loss through Euthanasia Susan Dawson and Bill Campbell Section 3: Mourning The Saying Hallo Metaphor as Alternative Approach to Death-Related Counselling Werner Nell

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Remembering the Dead: Roadside Memorials in Ireland Una MacConville and Regina McQuillan

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“Untitled” (Queer Mourning and the Art of Felix Gonzalez-Torres) Emily Boone Hagenmaier

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Notes on Contributors

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Welcome to a Probing the Boundaries Project Dying, Assisted Death and Mourning appears within the Making Sense Of: Dying and Death series of research projects and publications (www.interdisciplinary.net/mso.htm). The project is an opportunity to engage in creative and innovative inter-disciplinary and multi-disciplinary research dialogues which seek to examining the links between living and dying, and some of the contradictions and paradoxes which arise that we appear to accept without question. Key themes that are central to the project include; x

contradictions and paradoxes

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dealing with and responding to different kinds of death and dying

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technology, dying and death; the impact of advances in medical technology

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Institutions, dying and death

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legal issues in dying and death

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philosophical and ethical issues in dying and death

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the management of dying and death

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who deals with bereavement?

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religious issues

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the representation of dying and death in media Dr Robert Fisher Inter-Disciplinary.Net http://www.inter-disciplinary.net

Introduction Asa Kasher Death is a topic people are reluctant to ponder. Neither is dying a process that is usually openly discussed. However, there are a variety of occasions when dying and death are on a person’s mind, under some sensitive circumstances, when people might be eager to discuss dying or death with a close person, a friend, or a professional. Some warm and intelligent discussions of death or dying can draw upon personal experiences of either. However, resources of insight and understanding as well as of comfort and support are much broader, richer and sometimes even deeper than personal experience, as emotionally rich and broad and deep as that may be. In addition to one’s personal experience, there is the experience of many other human beings, under similar conditions, but during some other period, or within the framework of a different culture. Moreover, in addition to personal experience, which undoubtedly is of paramount significance, there are levels of understanding, and knowledge of deeper conceptions and perspectives, which may be acquired by scholarly pursuit and scientific research. The present volume, the third in the Series on Dying and Death, is meant to enrich the personal experiences of dying or death by providing its reader with the above-mentioned additional resources of both kinds. It enriches personal experience by shedding light on related events or phenomena, at times of remote times or places, as well as by analysing familiar attitudes and common practices with respect to death or dying and disclosing underlying conceptions, assumptions and ideals. It is our firm conviction that both of those ways of enrichment of personal experience are not only possible, but also desirable. They are of general importance, regardless of one’s original perspective or resulting attitude, first, because they enable persons to better understand their own lives, views and practices, and secondly, because they present persons with new forms of life, thought and practice, which they can use, if they so wish, to whatever extent they wish. The papers in the present collection are all new. They reflect their authors’ scientific research, scholarly pursuit, professional experience or practical advancement of issues related to death or dying. Professional investigation of such issues often rests on personal experience, on the author’s personal implicit interest in aspects of loss, be they causes or effects, meanings or conceptions, emotions or expressions, or other facets of the topic. However, papers can be read and well understood without any acquaintance with such personal background stories.

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______________________________________________________________ The collection is divided into three thematic parts: dying, euthanasia and mourning. Section 1 presents four different perspectives of dying. First is a presentation by Mary Josephine Mahoney from the personal and professional point of view of a caregiver in a hospice. The second presentation, by Jeremy Weinstein, adds two further perspectives, that of the relatives of a dying patient and that of professional caregivers who try to support these relatives under the special circumstances in which they accompany their dying beloved ones. The other two presentations in this section are of a quite different nature, observing death and dying in a less direct way. The first, by Chris J. Onof, is a discussion of philosophical conceptions of the self and what deep insights can be gained about it by pondering death. The other, by Karl Traugott Goldbach, is a discussion of how a certain type of death was presented in German Opera from the 17th century to Wagner. Changes in operatic depictions of political murder show transformations of the concept of death on deep, underlying levels. Section 2 is about assisted death, euthanasia as it is often called. Two perspectives are presented, which should be familiar more than they seem to be. First is a paper written by Nele de Bal, Bernadette Dierckx de Casterle and Chris Gastmans and examines the perspective of the nurse who takes some active part in each case of potential or actual assisted death. The paper was written in the context of Belgium, where such assistance is legal, but it discusses similar circumstances in other states and suggests enhancing the influence of nurses on decision-making in assisted death. An utterly different perspective explored by Susan Dawson and Bill Campbell is that of a person who initiates and participates in a process of assisted death of a companion animal. Similarities abound between attitudes and emotions manifest when a person faces the death of a human relative and that of a companion animal. Dissimilarities are also discussed. Section 3 is about mourning, in the broad sense of having in one's life a meaningful presence of a beloved person who has passed away. Each of the three papers shows aspects of the continuing bonds between the living and their beloved ones, who are dead but "live in the hearts", in the words I used in my own contribution to the previous volume, Dying and Death 2. The first paper by Werner Nell presents many ways of maintaining or reestablishing such personal bonds, thus replacing the sensitive and constructive approach of saying hallo for the common, often inapt approach of saying goodbye. The next paper by Una MacConville and Regina McQuillan describes the ubiquitous roadside memorial signs, erected mainly where persons died in car accidents. A survey of those signs, present along one highway in Ireland, shows how rich and deep is this form of commemoration. The last paper is again on forceful pieces of art that show the continuing bond. The paper by Emily Boone Hagenmaier presents the work of Felix Gonzalez-Torres, and in particular his piece "Untitled". The

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______________________________________________________________ context described is that of Queer mourning, but it applies to other mourning circumstances as well. Our collection of themes related to death and dying is neither exhaustive nor arbitrary. It reflects our conviction that one can significantly enrich one’s conception of death and dying, both for personal and general purposes, only by becoming more familiar with the three dimensional plane of theory, practice and experience. Moreover, each of these dimensions involves a highly variegated family of themes, related to a variety of periods and places, viewed from a variety of cultural perspectives, discussed within a variety of disciplines. That rich nature of the dimensions of theory and practice is manifest in the papers of these sections. It is also manifest in the combination of the present volume with the previous ones in the Series on Dying and Death as well as in the soon to appear, next, fourth and fifth volume in the series. We are grateful to the authors of the papers for having accepted our invitation to contribute to the present volume. We hope our readers will enjoy these papers as much as we have. Last but not least is our friend, Dr. Rob Fisher, whose warm encouragement, during all stages of preparation, has been of crucial significance. Rob Fisher, contributors to the present volume on dying and death, and myself, have certain dear persons in mind when he or she makes one’s scholarly or scientific or practical contributions to the sphere of treating death and dying. We dedicate the present volume to the memory of all those beloved persons.

Asa Kasher Israel, 2008

Section 1 Dying

Hospice and the Intangible Wonders of Being Mary Josephine Mahoney In 1993, my interview to be a hospice nurse in Houston, Texas took place in a vinyl doublewide on a lot of prime real estate in the southeastern medical district. Two hundred yards uphill, the construction of an inpatient facility had just been completed. A three-story Tudor replica of the original Hospice estate building awaited its grand-opening on a deep green lawn behind black iron gates. That Thursday afternoon promised a ceremony with the pomp of Texas-old-money and down-home charm. Velvet ropes and balusters lined the porticos. Yellow ribbons flapped the uprights of the brick archways. I attended the opening with Sally Kane, the director of nursing. At the ceremony’s end we clinked our plastic champagne glasses to my “joining the outpatient team.” *** The brooding sky on that September afternoon crackled and hissed, but the CEO stood waiting for the guest of honour with his scissors ready and a cordless microphone pinched on his lapel. When the Bush limousine crawled in on cue, the Wales-born CEO spoke hearty Texan to the wellheeled crowd of trustees and benefactors. “Perhaps the raindrops are tears of compassion,” he said. A minister and a rabbi each led a prayer. The founding doctor stood long and straight in the receiving line by the podium, his fingers clasped in the weave of a simple basket. In his navy suit, this tall and pale doctor with jet-black hair made many nurses think of the young Abe Lincoln. In these circles, our Abe was a local messiah, since he had pioneered hospice services to the city. Fourteen years prior, two charitable and visionary sisters of the Carmelite Order had rented out a vacant wing of a convent to him for ten dollars a month. From this collusion, the legacy began. Abe gave the formal dedication of our oath and vision. He sprinkled his tactful address with seedlings of layman's Zen. After Abe spoke, Barbara Bush stepped forward in a serene teal suit, joined hands with the CEO and said an effectual kindness. They two hewed the yellow ribbon. The ribbon gave a brief snap and fell on the crimson bricks of the ambulance circle. The community saw this at six o'clock on NEWS 2 Houston. *** In 1993, the Houston elite changed the care of the dying from a marginal social cause to a sanctioned one because compassionate care of the terminally ill had arrived as a prevalent ideology for those of great means. The clemency of the rich would put us on the map, even our itty-bitty,

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______________________________________________________________ twenty-four-bed institution in the tangle of Houston where teaching hospitals and charity hospitals freckled avenues as predictably as car dealerships. The edifice alone, the Suits purported, could channel even more clients and donations than the Candlelight Ceremony on New Year’s Eve. At night, the satin sheen of masonry under soft yellow floodlights would connote a very sound pedigree to passers-by, undoubtedly headed to the miasma of the cancer centre where the riskiest lymphomas and insulinproducing tumours were treated but not necessarily cured. The building alone would keep us fat with money. Since the mid1980s healthcare crisis, there was little to no chagrin left among healthcare executive officers. At the Hospice, when they spoke the high language of profits and ventures about a service to the dying, our wise receptionist would draw the pocket doors of the meeting room to keep their words from reverberating through the public hallway. *** In design, the new Tudor was a close cousin of the red brick estate house adjoined by a bridge that overlooked a peace garden. It would house twenty-four inpatient rooms, respite for patients whose pain ran wild or for families needing relief. The two floors also sported dining rooms, a mediaconference room, two lounges, a supplies facility, a pharmacy, and a state-ofthe-art therapeutic bath tub in a room with womb lighting that would be used only twice in the next two years. The tub was so low and deep the nurses could not lift a frail patient out of it. A whole security station was there, and of course, more executive offices. At the ribbon-cutting ceremony, rumour had it that a malingering fight among the administrators had settled it: the seven thousand square feet of the old estate house would most certainly be accounting and business suites. A halcyon inpatient facility - there was no chipped paint, and the artwork illustrated nearly cliché Texas landscapes, custom-framed in flat blue hardwood. Two sea-foam green cushioned chairs converted into sleepers in each inpatient room, enticing a spouse or child to nap when the patient was lost in stillness. The care centre ran with all the conveniences of a four-star hotel, down to the quiet rollers on the meal carts. Mostly though, inpatient care provided a chance for centralised materials and a pharmacy for when homecare nurses struggled to settle a patient. Once, a skin-and-bones man yelped for two hours, through triple doses of Xanax and morphine, like a dog caught in an electronic fence. After coercing his sister to trust he was not acting - denial reared as often as vagary in the elderly - we brought him in. ***

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______________________________________________________________ Almost all benefactors want to see the results of their hard-raised donations. They do not want their money lost in the intangibles of a cause. Even for the Hospice benefactors, giving money had to result in the production of “things,” from custom-made teak benches to nondenominational prayer gardens and replicas of royal English buildings. Benefactors are certainly all good, but they may mislead the community about the essence of hospice. The comforts of inpatient care are provided to only twenty percent of the patients. The banner work of hospice takes place elsewhere - in a bedroom, at home, on flowered, polyester sheets - or in a living room rearranged to house our one pink elephant that does receive insurance reimbursement: a rented, electric bed that raises and lowers with precision and a polypropylene mattress that breathes as it rocks a quiet patient from left to right and back again. *** The outpatient nurses’ trailer sat yards away from a winding bayou edged with a concrete embankment built by the city in effort to provide flood control during semitropical rains. Three times a year, give or take, I learned, bayou water would forge across the grass and beneath the cinderblocks that raised the floor of the trailer five steps higher than the marshy land. Within the first hour of a storm, the nurses’ cars would sit hip deep in brown water that climbed and amassed in circles. The trailer stayed put, but black ants and fire ants came into the rooms like urbanites exiting trains. Forced out of their hills, as the floodwater passed through the crawlspace beneath us, they came in, onto desks, tables and counters, into cardboard boxes of medical supplies, up through the sink drains and down the walls. They disappeared in the specked, industrial carpet. But true to form, Troy, from Maintenance and Supplies, always came right over from the main building in his thigh-high waders with an insecticide canister the size of a bowling bag. He sprayed us clean of ants while calmly and generously sharing aphorisms like, red or black, no such thing as a good ant, or with extraordinary chivalry, I take good care of my ladies. *** Weekend homecare required I drive my blue Honda through rush hour in one hundred twenty degree heat, June through September, and through semitropical rains in the October and November, while taking cellular phone calls dispatched from the after-hours service. Every Friday at five p.m., I turned on my beeper and cellular phone, propped one hundred alphabetized charts in a red milk crate on the passenger’s seat of my car. I

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______________________________________________________________ folded a city map into orderly eighths and moored it between the seat and the console for the emergency brake. I replenished the Rubbermaid storage containers in my car trunk with medical supplies: intravenous fluid bags and tubing, adult and paediatric urinary catheters, Chux and adult diapers and shrouds, Keri lotion and Eucerin, salves and bandages, splints, a sphygmomanometer, a suction pump, two fire-engine-red needle canisters, four boxes of disposable gloves, pink tape, clear tape and white hypoallergenic paper tape, and a one-gallon bottle of bleach. The drug box had to be picked up on Friday and locked in a cabinet each Monday. The drug box was a plastic tackle box with the letter B painted on it in cherry-red nail polish. It was stuffed with needles, push ports, and alcohol wipes, red, blue and green capped test tubes, saline, Heparin, Scopolamine, Ativan, Benadryl, Valium, and unofficially, any bootleg morphine we could dreg from the day nurses' bottles. Night calls for crisis pain made the three-hour wait for pharmaceutical deliveries excruciating when Abe gave an order at midnight for morphine to alleviate cancer pain. We knew this was bending the rules, but it was so much more humane than the law. *** The unofficial authority of the American Palliative Care Assessors backed our weekend homecare program for four registered nurses, but we always hired two. Janine and I navigated calls and home visits from Friday to Monday. We worked the city grid collectively, driving about separately within a forty-mile radius from downtown. When one of us was bogged down, we divided urgent calls between us, staying to the right along Highway 59, pinning the cellular phone to one shoulder while logging scrambling notes on a yellow legal pad. Sometimes we lost track of each other. When too many hours passed without an update, as soon as one nurse was free, she touched down on the other at the house of a patient who was still going through the paces. We clocked several hundred miles on our odometers per car each weekend, fielding calls in daylight and headlights. We averaged three hours of sleep each night. There were nights when I hung up the phone with my chin trembling, nights when I cried for the patient and for myself as I washed my face awake and brushed my hair into a ponytail. But every Monday morning there was Sally Kane yelling from the doorway of the doublewide “Welcome home, my strongest nurses!" Sally would wait for us waving pink phone messages in the air like parade flags. She would follow right along with Janine and me as we headed numbly to the kitchenette in the back of the trailer for hot glazed doughnuts from Krispy

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______________________________________________________________ Kreme. She would cheer us on, reading out praiseful voicemail to us that she had just retrieved. Sally understood where we had been. *** The Hospice nurses who were Buddhists used to say that one goes into hospice not because of where one has been, but because of where one is destined. *** In two years, I never had any trouble with the police about the contents of my car trunk. Several times, policemen were at a patient’s home because a male family member had gone violent during a sudden death. While on my way over to the house, a female family member had called the police because either she or I were suddenly the intended repository for this rage. When I arrived, the policemen met me in the street, escorted me past the sweating and drunk son who threw a hammer and a ladder and a bicycle at the sheet rock of the garage wall when the cops led me up the driveway, through the house, and through my work and then back to the street. One man had a pistol. One man grabbed my arm and shoved me into the kitchen. The cops pinned these two against the wall and then took them for walks. Truly within range of homicidal fervour that was ultimately about unspeakable grief, the cops never found the gall to say to me “whatcha got there?” upon seeing the narcotics in my box. *** Days before Suzanne was put under the morphine, she was agitated beyond circumstance with her hair salon, La Tressisima, extraordinarily so, for charging her forty-seven dollars for a designer haircut. Her reasoning went like this: she had been a regular customer for six years, since the day they opened their mod steel doors; she had brought the salon business by parading the art of their first-chair coiffeur, Margie, out and about Bay Town, Deer Park and Clear Lake. Everyone knew from Suzanne's conversations that Margie worked half the week at La Tressisima and half the week in television cosmetology as the stylist for Ricki Lake. Suzanne's reasoning ended in a snide conversation with herself: Q: Margie overlooked that suddenly I have chemotherapy fuzz for hair? A: That cut should have been at most eighteen-fifty for a trim.

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______________________________________________________________ The day after Suzanne had died the salon gave her husband a free haircut out of sympathy for his loss. At dawn, the morning of her funeral, La Tressisima burned to cinders. When a hospice nurse hears this story, she believes it. *** Winifred answered the door to the one-bedroom senior apartment on the twelfth floor of the northwest high-rise. She said with lovely, Jamaican ease, “hallo dare,” then closed the door behind me. The noon light through the semi-sheer drapes crawled along the living room couch, moving the shadow of jade leaves on the sill across its cushions. Family photos in oval frames with ball-feet preened on skirted end tables and through the glass of a curio cabinet. Two white envelopes leaned against a table lamp. Otherwise, all was notably still. At eighty-six, Evelyn Holcombe was dwindling. Winifred, a veteran nurse's aide, had called me to say “Evelyn has not been awake for a whole day." In the bedroom, Evelyn was poised upon four white pillows on the left side of her king bed. Her round face was still complete but white as bone, framed by woolly gray hair. Neither strained nor blue, Evelyn was a pearl breathing low and slow, ten breaths per minute. I strained to hear her from the bedroom door. Near the bed, a wingback chair sat askew. A hot morning sky bent in through the open window. A white heat fought with the transit from the air-conditioner slowly tufting the curtains. Two pink towels were spread on a card table where Winifred had arranged diapers and washcloths, three snap-front nighties, lotion and a purple dome of talc that smelled like fruit drink. Winifred looked at me. Reading my face, she said, "Yes, we are very close." That morning when Win had washed her up, a stream of mucous rolled out from Evelyn’s mouth. Win knew what this meant, so she had already called Evelyn’s son to come from Dallas. From the living room, I called Abe, who prescribed Scopalomine to decrease lung secretions. We swabbed Evelyn with a warm wrung cloth, and I stuck a medicine patch on the papery underside of her arm. Win washed the basin, folded and tidied the wet cloths in the bathroom sink before taking her due in the wingback chair. Evelyn seemed snug and composed. The curtains were sufficiently twisted into stillness. The scope patch was kicking in. Win spoke to Evelyn teasingly about the impish eyes and polished smiles of kids in the picture frames who, "it was clear as this fine Sunday to see," played both sides of the fence with their grandmother. Win turned to me. She said, “We are high," nodding to the open window, "to let her soul get free.”

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______________________________________________________________ At noon on the twelfth floor of a high-rise in Houston, on a Sunday, we had every indication that Evelyn would actually die in peace, when a woman's voice began to keen a ballad about evergreen trees. The clean, puncturing notes of this popular soprano milled in through the window. I walked right out of the bedroom. Even easy deaths were never like this. From the living room balcony, I could see a bus parked alongside Harrison Park, a landmark city green. Workers assembled a stage to the left of the fountain, a three-story "spill" down a wall of black marble. When squarely facing the water-wall from the ground, one takes on the thought it is an office building under deluge. There had to be an explanation for the singing. Speakers and amplifiers amassed in the grass near the bus, but where was the singer? “A stranger thing Ah have never seen", Winifred called out from her chair, amused, and Evelyn was changing. She took long inhalations and fast exhalations. Spittle caught in her lips. Her fingers mottled, and her eyes grew sallow, blue rings. The singing continued, this time of a song about love and luck, and within these three minutes, Evelyn stopped. *** At six o'clock, NEWS 2 Houston featured the singer who gave a Sunday afternoon benefit concert for AIDS research at the water-wall. When I heard the music play from the television, I felt Evelyn again, alone at eighty-six, freed not by any measure of money or "things," but by the happenstance of a voice singing laudably to the reaches of twelve floors, intangibly, her art for human charity. *** Afterword I rarely concede to the possibility of higher forces. Mortal efforts touch me, convince me that landscapes of hope come as the consequence of listening to human gestures: a deliberate budge of hand, calm shoulders in which a body sleeps, words that wax us, suddenly, and tingle the skin like Mentholatum, words that call us, giving our constellations of understanding new breadth and dimension. Just now on Book TV, among many other polyester threads of words, Anne Lamott weaves silk strings, loose ones that arrive from the platitudes of recovery. She is entirely “in her words” - she is not blowing smoke, she is not angling for a twelve-step televangelism. She is sharing, and that is what I love about her. She is a gymnast nearing the end of an interpretive routine - a word-dance with modern exposition, a swing and squirm number about belief

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______________________________________________________________ that concludes with a slow walkover, its sedate possibilities. She speaks her own way of holding onto the pageantry of experience. I am moved by Anne Lamott’s words as gestures. I am not thinking at all about our concordance, about whether or not I agree with what she says. She knows we are all different people. She does not speak to control. This is what I like about her. Her singular human effort to make meaning from experience, to speak authentically rather than perfectly, feels significant to me because I am too aware this morning that we are citizens of a nation at war. On this April morning, a Saturday, the first return of a tranquil day lands here in the Frost Belt, a rural region of New York, where spring has not quite yet appeared. The trees are still bare. The outer branches on the curb side maple tree strain for the light sky. Two feeder branches point to the sidewalk like magnetic needles that have lost their partiality for the sun and stars. Their lifeline, the scientific axis that had drawn them up, their hope, their life force, failed them. The physical attraction between sky and tree, two natural bodies, was broken by the ice one of them shouldered. The weight was too heavy. The load was too much. The surge had thinned and two branches fell. The sky stayed dark for too long. The branches could not bear the weight of water at their short height from the ground. The winter sun, though closer to the earth, had to strain its way through the condensed water vapour that suspends over this region, an annual, meteorological circumstance of physical geography that exacerbates the cold and prolongs the darkness. From the television I hear Anne Lamott again. She appoints this challenge to writers, “how alive am I going to be?” and so I feel the compulsion to add “today.” Today, I begin, we have a responsibility to stop cruelty. *** There was a night in 1990 when I sat from midnight to five-thirty in the morning in Grand Central Station, in my nursing whites and an armynavy wool coat, waiting for the Metro North train. I had been a “float nurse” in the ER at Lenox Hill Hospital for the four-to-midnight shift. The man in bed seven coded while I was out getting coffee around seven-thirty. The entanglement that followed among the ER staff was tremendous. The nerve of the resentment was about paperwork. Accordingly, I missed the last train home from Grand Central Station. It was a Friday night, so I did not have much urgency to take a cab to Westchester. I was in my second year of an M.F.A. program in Poetry at Sarah Lawrence College. I had a room in a graduate student dormitory for

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______________________________________________________________ women only. On weekends, I worked as a “float nurse” in several city hospitals. A cop kept checking on me in the roped-off waiting area above the grand concourse. I sat fighting sleep and cold wondering about how other poets paid their bills at twenty-six. The cop told me not to walk around because junkies roamed the station through the night. When I wore my whites on the streets and train platforms, cops behaved chivalrously to me. This manner always caught me by surprise, yet I liked these moments of feeling outside the range of the trigger. In my whites, I was safer than I was at other times, when most often I was “not seen.” Nonetheless, I knew that for the most part, Irish cops in New York City knew that Irish nurses were by no means weak. He parcelled two or three other commuters who had missed their trains as well to sit with me. We sat on two benches behind ropes. We never spoke to each other, but neither did we leave our seats. We spent the night together on the balcony of the main concourse. I did not like it that my white leather shoes, white hose, and white skirt spoke louder about me than my second-hand, surplus coat. Basically, I was unhappy to be there. As the balcony grew colder and colder, I read Raymond Carver stories and checked my watch against the time on the four-faced clock above the information booth. At three in the morning, the sour smell of yeast baking rose from La Madeline Bakery on the lower concourse. Workers were preparing for the morning, for the suburbanites moving to and fro, even on a Saturday. Time rolled slowly as the scent of dough browning grew sweeter. I yearned for it, and a cup of roasted coffee, and the epiphany of the sunbeams that would range across the ticket area like light within a cathedral during a beatification. My stomach pinched from acid and sleeplessness. I studied the gray ceiling of the station and its arc of zodiac constellations. I kept my knees close beneath my white skirt and my feet tucked beneath my bench to keep the heat in. Then the cop came over again. He told me that the constellations were painted backwards. He meant they were transposed. What was read left to right was a mirror image of how these constellations wrote themselves across the sky. I became held by their physical dimension, and the contemplation required to compose them. I imagined how the painter, against all gesture and intention, had a slip of perception for days on end. While on a scaffold, he painstakingly measured the distances of each star from another, twenty five hundred of them, inch by inch, until in relation to each other they became a crab, a hunter, a virgin, a winged war horse and a bull. At once, this community of allegorical figures was suspended from a green metallic sky and bolstered into infinite space. The disorder of their parade and the half turns of their bodies drew my empathy. That was fifteen years ago. I am still moved more by presence than perfection.

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Hospice and the Intangible Wonders of Being

______________________________________________________________ *** In 1983, the community hospital where I worked did not yet use the acronym AIDS. We had FUO, for fever of unknown origin, in marker on a red card on the door jam of private rooms with an anteroom sink and hamper. This is where the donning and disrobing of protective suits happened. In this 4 x 6 foot space between the hall and the patient’s room, the garbage can had biohazard symbols and the red interior bags were doubled and then encased by a clear garbage bag to protect us. Blood and body fluids were toxic, as if they could leap from a bag and burn through a nurse’s skin and coat her bloodstream with maniacal agency, an alien virus of great rapacity that would course her blood, or any new prey, at ten times the pace of radioactive dye during fluoroscopy. Even to take a patient’s blood pressure, we were required without exception to get into white plastic space suits, shoe covers, masks, goggles, caps and slippers. We wore them into the room like astronauts navigating the other world, the mystery disease, the patient aloft in the fateful atmosphere. The illness would in two years’ time, through the first years in my work as a nurse, be named AIDS. Thereafter, it seems, compassionate care for AIDS patients began. *** We have an obligation to document our imperfect worlds as we live in them and see them, since we are all we have. The chronicle of our experiences, even our human failings, our inevitably troubling metaphors and impositions of good deaths, as I have surely done to Evelyn, map the recidivism of the diseases of culture - would writers and artists find this calling more important, politically, than the art of exquisite things. In the minds of others, it is by our words and acts that each of us is “spoken for.” What could change for us, my penance of a sort as a citizen of a violent nation, comes by way of a transubstantiation of Adrienne Rich’s point in her 1971 essay “When We Dead Awaken.” Should we apply our creative lens to poems, stories and memoir of the sick and disenfranchised, these vital texts may have a visible effect on the quality of our patients’ lives.

‘So That’s a Completely Different Story’: Competing Narratives in the Lives of Relatives Caring for Dying Patients Jeremy Weinstein Abstract This chapter is based on a small-scale qualitative research project and focuses on the responses of those whose parent or partner died in a hospice. It draws on narrative research methodology and gestalt field theory, to examine the complex and sometimes contradictory, sometimes complementary series of stories that individuals tell as they struggle to make sense of the process that overtakes both their relatives and themselves. Some key points are identified: when the ‘well person’ first becomes diagnosed as ‘ill,’ a patient to be cured within the mainstream hospital system, ‘dying’ under the care of the hospice, then memoralised through ‘a good send-off’ and, finally, as part of the mourning process, the deceased is recalled and reintegrated back into the reconstellated family. Particularly striking is the sharp contrast respondents make between the hospitals, uniformly criticised, and the hospice, equally praised. The suggestion is that in the hospitals the dominant medical narrative of denying death, which the respondents experience as marked by misdiagnosis and failure, provokes in them a similar fight response, directed at the hospital. In contrast, the hospice holds the reality of the dying, thus allowing the pain, physical and psychological, to be contained, so fighting abates and patients and parents/partners relax into the dying process. Keywords: Death and dying, bereavement, hospital versus hospice care, narrative, gestalt field theory. ***** This chapter explores the theme of ‘narrative,’ which is very appropriate for a collection of papers that contains so many very different stories, or narratives, about dying and death. And these may be competing as well as complementary voices drawing on many different disciplines: health care, sociology, philosophy and those of different national or ethnic backgrounds. And these differences are often based on the power dynamics of the wider society, for not all voices are seen as equal; some are dominant and some normally silenced or marginalised. Consequently this volume, and this chapter within the volume, seeks to dismantle this Tower of Babel and

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______________________________________________________________ continue the dialogue, putting at centre stage the stories of the dying and the bereaved themselves. The background to this writing is an interesting object lesson, showing how easy it is to miss these voices in the impatience of the professional, the soi-disant expert, with his or her own agenda, in this case myself as the researcher. Thus this paper originates in a small-scale project where my original intention was to investigate the experiences of two different groups of people who had had a close relative, partner or parent, die while in the care of a hospice. One group had received counselling, the other had not, and my aim was to research the indicators of recovery and the contribution of counselling in assisting that process. I used both a general questionnaire and a smaller number of in-depth interviews and in the event there were some interesting, if tentative, findings1 on that matter, but when I begun to study more carefully the responses of those I had interviewed, other, previously unnoticed themes began to emerge. The sample was small, just seven people, so it is important to be cautious about the lessons to be drawn, nonetheless some consistent narratives do emerge clustered around the stories the bereaved tell about themselves and the deceased. These are focused around five key turning points: 1. The well person becomes ‘ill,’ ‘the patient;’ 2. The patient and carer: fighting the hospital, fighting the illness, death denied or deferred; 3. The dying patient, patient and carer negotiating ‘the good death;’ 4. The deceased memorialised, ‘the good send-off;’ 5. The deceased recalled as the well person and reclaimed from the death professionals. While immersed in the interviews I came across Blake Morrison’s ‘confessional memoir’ about his dying father. He uses the title “And When Did You Last See Your Father?” And he asks…. Was it when they burnt his body? Put the lid on it? When he exhaled his last breath? When he sat up and said something? When he last recognized me? When he last smiled? When he last did something for himself unaided? When he last felt healthy? When he last thought he might be healthy, before they brought the news? The weeks before he left us, or life left him, were a series of depletions… I keep trying to find the last moment when he was still unmistakably there, in the fullness of his being, him. (Emphasis in the original.)2

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______________________________________________________________ I find this picture of someone seeking to reclaim his father from illness and dying and depletion very poignant. And I subsequently came across an interview stating that when Morrison’s father told his general practitioner that he had been diagnosed with cancer, he commented “and that’s a completely different story.”3 So this returns us to ‘completely different stories’ and how people across time and across societies have used these to find a way to explain death and dying. From the woodcuts of 500 years ago that represented the Ars Morienda, the art of dying right, to our modern fiction, novels, TV soaps, films, biographies and autobiographies, newspapers and documentaries. There are television programmes like the American series ‘Six Feet Under,’ films such as ‘Truly, Deeply, Madly” or ‘The Boy’s Room’ which record how individuals respond to the death of a family member, the funeral in ‘Four Weddings and a Funeral,’ the book and film ‘Last Orders,’4 the best seller ‘Lovely Bones’5 about the dead keeping an eye out on their surviving family, and the rather more darkly comical take on the same theme, Will Self’s ‘How the Dead Live.’6 And when we replace the term ‘story’ with the more technical term ‘narrative,’ we see how this perspective has become an important theme within research7,8 and therapy.9,10 While there are many different interpretations of what ‘narrative’ means, as a body of theory all share a recognition of the compelling psychological need for people to find their own voice for what they have been through. As Polster puts it: “Humans, as storytelling animals, are impelled to animate the events in their lives, to organize them, and to identify with them… these stories always reveal important aspects of themselves, especially when they are the lead characters.”11 It also allows the listener to ‘live through’ and not simply ‘hear about’ the shared experience.12 Research into the effectiveness of narrative is relatively undeveloped, but some evidence does exist of its effectiveness in the area of death and dying. Bolton13 describes therapeutic writing by hospice patients and finds that this experience leads to improved self-confidence and understanding of the circumstances they face. Carers also report some relief in symptoms. Other, on-going research with those who have been bereaved seeks to identify ‘the active ingredients’ which can bring out ‘the healing power of narration.’ The experiment involved studying the accounts of 140 recently-bereaved individuals writing an account of their losses. Some had been encouraged to be external/objective, focusing on the facts of their loss, others to be internal/reflective exploring the subjective meaning for them of the loss. The researchers then assess the level of problematic or traumatic loss, along with standard measures of depression, health behaviour, etc. prior to, immediately following, and several weeks after three writing sessions. The research is not yet completed, but the authors feel sufficiently confident

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______________________________________________________________ to comment that “some participants are using the opportunity for narrative reflection to work towards profound transformation of the tragedies about which they are writing.”14 What seems key to the healing process is that it allows the narrators to become the ‘lead characters,’ the story becomes theirs, especially important in the area of dying and death where the dominant voices are often those of health care workers such as nurses and doctors. Greenhalgh and Hurwitz draw attention to how, because the clinical diagnosis focuses on those aspects that most fit medical expectations, “the patient’s narrative has become increasingly repressed in medical practice.”15 This is true also of other ‘death professionals’, such as bereavement counsellors who, it has been argued, “cultivate uncertainty”16 or “police peoples’ grief to fit with Freudian imperatives to ‘let go and move on.’”17 Lawton,18 whose research is hospicebased, refers to ‘cultural currency’ to convey “an image of dying which others wish to believe” and this is true of how we ‘fight cancer,’ give someone ‘a good send-off’ or ‘reach closure’ in bereavement. These can be seen as the macro or dominant narratives, they provide a familiar framework or template of what ‘makes the world go round,’ but the question then arises as to how these fit or contrast with the personal narrative, what the individual actually experiences in day-to-day life. This is key to our discussion. What do people do when they realise that what they think they ought to do is not the same as what they actually do, or want to do? And how far, in the new narrative that emerges, are they fashioning themselves, consciously or unconsciously, as heroes and heroines in a ‘moral tale,’ selecting out those aspects which “demonstrate their rationality and moral accountability.”19 One way to explore and appreciate the wealth of forces that exist within one person’s experience, the sub-narratives available within the one dominant narrative, is to draw on field theory, a concept first developed within gestalt psychology by Lewin and others and then adapted as a key concept within gestalt psychotherapy20 and which allows individuals to see patterns within complex material. Zinker helpfully uses the metaphor of looking up at the sky on a clear night and seeing a mass of stars, “an unbounded panorama” and, as such, quite overwhelming, so the observer “draws imaginary boundaries to make sense of the experience”21 by seeing and naming particular constellations, such as the Milky Way. Taking the example further, the observer, if spiritually minded, can wonder at God’s great work, if scientific, calculate distances, if political, rage at how pollution affects visibility of the stars. And all these perceptions are ‘right,’ and one individual might move from one view to another depending on the moment’s preoccupation. The ‘field’ is, then, a “systematic web of relationships… The field is a unitary whole, everything effects everything else in the field.”22 From this comes the phrase “the need organises the field,” a succinct way of explaining how we all act in ways that, in that moment, make sense to us,

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______________________________________________________________ keep us in order. “A man does not perceive things as unrelated isolates, but organizes them in the perceptual process into meaningful whole.” 23 Returning to the key themes in the respondents’ narratives, these can be presented diagrammatically as follows: LIVING -------------------------DYING------------------------ DEATH HEALTH --------------------------------------------------ILLNESS INDIVIDUAL -------------- FAMILY ------------ SOCIETY PRIVATE SELF -------------------------------PROFESSIONALS 1. “Well person” becomes an “ill person”: “and that’s a completely different story” The narrative that is expressed time and time again is the respondents’ shock at the diagnosis of illness, even when they acknowledge strong existing indicators of physical vulnerability. This is the first enforced acknowledgement that the assumed, dominant narrative of ‘normalcy,’ ‘wellness’ is challenged by the dis-ease of disease as voiced by more powerful medical voices. This tendency to assume good health, with the possibility of serious illness pushed well away from our consciousness, is evidenced in the wider literature. Laungani, suddenly stricken with a debilitating illness that seems to be beyond either diagnosis or cure, comments that “like most healthy persons I only became aware of my health when I lost it.”24 Sontag captures this in her image of us all having ‘dual citizenship,’25 holding passports to the Kingdom of the Well and the Kingdom of the Sick, but our not wishing to travel to the latter. Becker takes the step further of contemplating mortality, dramatically referring to how the “idea of death, the fear of it, haunts the human animal like nothing else; it is the mainspring of human activity, activity designed largely to avoid the fatality of death, to overcome it by denying it.”26 Health professionals, for their own reasons, reflect this in their own handling of terminal illness, explored here in the context of ‘breaking bad news.’ Danbury27 reports how widows/widowers learnt of their partner’s terminal illness, with 48% of the men and 41% of the women saying they received no preparation while 27% of the men and 41% of the women did not remember ever being told, rather they gradually became aware. Only 5% reported no bad experiences at the hands of the health professionals while, of the reminder, many were left feeling very angry. One respondent, herself a doctor and a counsellor, remembers being told of her husband’s illness: The consultant.… shuffled papers for several minutes, joked about signing letters and had no eye contact. “Oh dear,” I thought, “really bad news here.” He never did get

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______________________________________________________________ round to telling it directly but merely said that one must hope. He was not sharing my burden, I was sharing his. So, how does this relate to our respondents (all of whose names have been changed to protect their identity)? Leonie’s mother had had kidney cancer four years previously but once the kidney had been removed, the report was that the operation had been successful so “I had no real idea that there was a strong likelihood of reoccurrence… that really shocked me.” Leonie is distressed as she recalls how her mother became increasingly unwell before the diagnosis of cancer was confirmed but her condition was not taken seriously, the doctors had “marked her down as a moany old lady.” When a GP called at the home, and found a large stomach tumour almost immediately, “he called me outside on a pretext… I was standing, you know, outside beside his car boot in the road out there and he told me basically that she had a tumour and it was terminal.” And she comments: “That wasn’t a very pleasant way to find out.” Anne’s mother, at 80, had had a couple of minor strokes, so Anne reports “a sort of awareness that she wouldn’t be living for very long.” But the shift from the expected fragility of an ageing woman to something of more significance was a gradual process. The mother was clearly experiencing weight loss and as a result a hospital visit arranged for tests. While there a doctor suggested an x-ray, quite casually as Anne recalls it: “While you’re here, it’s just down the corridor,” and, then in the course of a weekend, the general, unspecified concern becomes named as inoperable lung cancer. And Anne was actually telephoned on the Friday evening with the news but kept it from her mother until the appointment which had been arranged the following Monday. She thought it would be easier if the doctor gave the news though, in the event, this was not very satisfactory: “she treated my mother like she was an incapable old lady” Malcolm’s mother had had various forms of cancer for the last ten years of her life and so she, and the family, had, throughout that period, “lived with the reality of the possibility of secondaries,” but alongside this was a sense of her as “strong-willed… adaptable,” always recovering. Family members had, therefore, put the fear “to one side” so when the diagnosis (of cancer of the brain) came it was “a pretty terrific shock …very sudden.” For Sophie there was a similar sense of the diagnosis of cancer being “a bolt from the blue.” Her husband had been in some pain, the aches were thought be the continuing effect of influenza or possibly a pulled muscle. Then “they” discover some fluid on the lung so he goes into hospital to get it drained off. Sophie insists that there was “nothing sinister” in this, “we’d been told everything was fine, my husband could come home the next day.” But when the family go in to see him instead of taking him home they discover him “all wired up, tubes everywhere, he was very agitated,” and

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______________________________________________________________ they are told he has a tumour. She describes the consultant as follows: “he stood at the end of the bed and, um, just said ‘we’ve found a tumour,’ … and walked away.” Tania’s mother, aged 68, was generally very fit but then experienced three or four months of being very tired, “completely wiped out,” suffering pain and weight loss. She also had a stiff neck and was prescribed physiotherapy for rheumatoid arthritis but to no good effect. She became so ill that Tania took her to Accident and Emergency where x-rays revealed a small tumour on her lung. This serious news is mitigated somewhat when “they said it had been very early and they could treat it.” And it is subsequently discovered that she has inoperable bone cancer which had gone untreated: it had been “a comedy of errors.” Stuart’s father had also been diagnosed with cancer but the family carried with them the story of his previous serious illness, diabetes, five years earlier. Stuart recalls how his father’s heart had stopped during the operation and even when he had his leg amputated he carried on getting about, quicker than his more abled family. This was as ‘typical of my blinding dad, he battled through’ and it was somehow assumed that the same would be true of his cancer. Stuart recalls his father’s illness being described to him as ‘a rare form of cancer and difficult to operate.’ He admits to not knowing whether this meant he had a few years or months to live but infers from the speed with which the care package was set up that it meant the latter. Frank’s wife was being treated for TB, again serious but manageable but it was then discovered that her illness was lung cancer and this news became caught up with his anger because of his strongly held belief that it was then untreatable only because of the delays in getting the proper treatment. Once the diagnosis is made there is the feeling that ‘it went so fast’. 2. Patient, “sick” but “fighting the illness”: death denied or deferred From then on, the patient and family both find themselves increasingly caught up in the medical process, which most have already experienced as insensitive at the ‘breaking bad news’ stage. Again the literature is insistent at highlighting the struggles within hospitals, where staff, apparently because they are uncomfortable with patients dying, as opposed to being cured, are seen as clumsy, a combination of carelessness and callousness. And this is not just a criticism from outside the profession. The editor of the British Medical Journal has warned against ‘the squalid end that may happen in a health service preoccupied with life at the expense of death’.28 In these circumstances what seems to happen for the respondents, whose narrative is otherwise silenced, is that they try and raise their voice to

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______________________________________________________________ a shout which militates against dialogue, or they seek to simply block out the medical voices, ‘denying’ or ‘deferring’ the reality of impending death. Sophie’s husband had decided against any treatment for his cancer and when she heard the doctor say that ‘it was a slow growing form of cancer… I just hung onto that thought of years’. And it was actually eighteen months. Sophie acknowledges that her husband ‘knew… probably… but I wouldn’t accept he was going to die… That was the only way I could deal with it’. They did not tell the fifteen year old daughter either: ‘We were trying to shield her’. Interestingly even when, as a couple, they attend a workshop on ‘living with cancer’ where she was aware that all the other patients present were terminally ill, ‘I was not accepting that at any point he was going to die’. She is also adamant against her husband staying in hospital to receive treatment because ‘hospitals have a habit of taking you over’. Malcolm’s mother, having been a nurse, fully knew the nature of her condition, but ‘it’s one thing to know something and another to confront it in oneself’ which was a statement for himself too. He felt that the sheer speed of the process, from diagnosis to death, meant that all the effort went into physically making his mother comfortable: with ‘so much to do’ there was no time to ‘analyse it.’ He had also been very angry when a consultant rushed his mother into radiotherapy even though ‘they had already told her it would not work’. This was against his wishes and also, initially, his mother’s but she was pressurised into the treatment, having just ‘a few seconds to decide’. And, in his view, she was even worse as a consequence, more confused and losing her speech. At another time, when the registrar failed to keep an appointment, Malcolm, in his fury, ‘trawled through the entire hospital until I found her and demanded that she do what she had said she was going to do and I didn’t care how busy she was’. This behaviour he sees now as quite uncharacteristic and out of all perspective. Tania decided not to tell her mother about her terminal illness, ‘she just wanted to get better, there was no point’. When she was admitted to the hospice the mother thought it was about pain control, ‘the place to come to get herself sorted out and get better’. It was difficult, then, ‘not actually being able to sit with her and talk with about what was happening’. Frank’s experience of the hospital treatment was ‘awful’, his wife ‘was not a person, just a number’ and the treatment she received meant that ‘she was not the same person’. He also fought the hospital doctors who wanted to keep taking blood samples, demanding to know ‘what’s the point? We know the result. Leave her happy, make her comfortable’. His wife had been a nurse so she knew her poor prognosis, and ‘at first we talked about it… (but) it was too upsetting… without deciding we stopped talking… we decided to put it in a bottom drawer … like it didn’t exist.’

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______________________________________________________________ Anne’s mother, over the last nine months, got progressively frail or, as Anne put it, ‘she just got reduced’. And Anne coped by ‘suppressing’ much of what was happening for her while her mother ‘just got on with life, or death’. And Anne shares the conspiracy of silence identified by other respondents. After the news is broken to her mother she got back into the car, ‘lit a cigarette and just said “I needn’t worry about giving up smoking now”‘. But this jokey comment was as much about closing down the conversation as opening it up for Anne reports that subsequently she and her mother ‘didn’t talk about what was happening very much... We were protecting each other really’. Leonie is similarly preoccupied with problems with the hospital. Her mother was on a surgical ward, which was ‘just not geared up for anybody who is not going to better… with the best of intentions they couldn’t do anything’, and her own struggle with the pressures of witnessing her mother’s distress: ‘I’m not very good with physical illness … I suppose a bit of me was blanking out just what all this meant’. Leonie also makes two contradictory statements. Early in our interview she comments ‘I don’t think she knew it was terminal’ while subsequently recalling that her mother ‘looked at me and said “I don’t think I’m going to be with you much longer, am I?” 3.

Dying patient/person and the “the good death” The concept of ‘the good death’ has become all pervasive: ‘the cultural currency’, as Lawton puts it, because it conveys ‘an image of dying in which others wish to believe.’29 The term envisages the individual and their carers facing ‘a dignified and aware death’, the dying person has the chance to reflect on their life and get their affairs, both practical and psychological, in good order. This approach is the dominant narrative within the palliative care movement and all these respondents had their dying parent or partner in the care of a hospice, whose work they evoke unequivocal praise. As we have seen above, the period before the death of Anne’s mother was dominated by harsh practical, physical elements of the illness which Anne found very hard. ‘I couldn’t believe it was so awful … like a horror movie’. And she was scared that if her mother showed too much fear of what was happening to her she was not sure she could have contained her own feelings and carried on. Given this it is paradoxical that Anne read and discussed with the palliative care nurse the classic, ‘Intimate Death’,30 which holds up the very model of openness that she is unable to sustain. But what she did do was to write to her brother, previously estranged from their mother, saying that that was the time to come and say goodbye. He did so. The mother died at home, as she wanted, and there was ‘no fuss, (it was) very calm’. Because the death

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______________________________________________________________ was at home her only experience of the hospice was through the nurse who was ‘extraordinary… She came into this very fraught situation, and just very calmly knew what was going on’. Sophie also values the chance of a death at home. Describing the last day she recalls how a faith healer had visited that afternoon, ‘she just arrived’, and all the family was at her husband’s bedside as he died. He asked for a glass of whiskey, ‘then he looked across my shoulder and smiled as if he was looking at something else… and he looked back at me and died. It was very, very peaceful, very peaceful.’ Stuart is rather ambivalent about the experience. He and his wife had gone off on a long planned holiday so he was not present for his father’s death. He is pleased that it was a peaceful, painless death but ‘I kick myself for not being there… there was nothing I could do (and) I don’t really go for that cinematic ending, all sitting by the bedside holding his hand (but) my internal feeling was that it was important’. Malcolm appreciated the hospice and both he and his mother had felt involved in choosing it, and had then been pleasantly surprised to find that it was ‘a place that was about living, not dying… very pleasant… vibrant’. And he noticed that his mother ‘even came back to herself a bit … she was quite funny at times... her personality reappeared for a brief time’. Frank reiterates this theme. First there is this enormous appreciation of the hospice after the unfortunate, dehumanising experience of the hospital. Frank notes a huge change: ‘Her dignity got back… she started smiling again’, ‘she sits up in bed to watch TV and ‘she starts talking about the future’. But how he could deal with his wife’s approaching death was clearly effected by the fact that they had mutually but silently agreed to put the prognosis ‘in a bottom drawer’ and she had also insisted that he keep it a secret from her children. ‘She didn’t want any pity’. Nonetheless he recognised that when she was having difficulty breathing that he needed to call his family together, he arranged for last rites (conducted from behind the door) and told the doctor ‘just do what you have to do’. 4.

The deceased memorialised, “the good send off” While rituals are very important in society to mark the grieving process, they are also increasingly difficult to get ‘right’, to meet all the needs of all the mourners and all the different aspects of the person being mourned, thus, in the funeral scene in ‘Four Weddings and a Funeral’, gathered in the church are two rather different congregations, a son to the apparently conventional, ageing couple and the gay community including the lover of the deceased who delivers the valedictory speech. Off the cinema screen there is also confusion as to how to mark a death. Walter reminds us that there has always been a tension between the accepted norm of grieving in private co-existing alongside the need for your grieving to be seen31 and

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______________________________________________________________ today the black arm bands and drawn shutters have passed and we have instead the shrines by the lamp posts to note fatal traffic accidents. And no one seems to know what to do once the flowers have faded. The respondents reflect all of these confusions. Anne organised a secular cremation, in accordance with her atheist mother’s wishes but, as a result, angered family relatives who retained their Catholic beliefs. It also left Anne discontented. ‘The service was terribly bleak…. I remember looking at this ghastly crack in the wall in the cemetery thinking I’d made this service horrible’. It became better for Anne with the memorial service she subsequently organised for her mother’s friends in the north of England, where the ashes were to be buried. Malcolm also found the actual funeral, a cremation, difficult. First he had to work out what his mother might have wanted since she had not left any specific instructions and as an ex-nurse she had had ‘purely pragmatic view about the body’. But he did know that ‘she had always expressed approval of people who been cremated (so) I took that as her directive’. Having worked his way to a solution he was left ‘frustrated’, the funeral ‘didn’t seem to quite do what it might have done. It felt all rushed’. Far more satisfactory was scattering her ashes at dawn in a local park that she had loved, planting a tree in Kew Gardens and remembering her on her birthday, a date she shared with his wife’s so it is a double celebration. Tania was someone else who found no resonance in the funeral, it lacked the hymns that she likes because her mother was not religious and now she won’t visit the crematorium specifically, ‘more if I’m passing’. Stuart was, exceptionally, positive about the funeral which took place on a lovely day with lots of people coming, ‘they made the effort’. The family also scattered the ashes and went to considerable trouble to locate the place used for the self same after his mother’s cremation many years earlier. He describes how ‘we dressed up, suits, did the business’. He also enjoys the way that the wind rather disrupted their plans ‘which was typical of dad’ but they now have ‘a spot to go to, periodically, to talk or take flowers or whatever’. He has now incorporated the hospice into his continued rituals. Their contact ‘gave me a real sense of ownership and belonging’ so he attends the Evening of Remembering, continues to make donations, buys their Christmas cards and will make occasional trips back to go round the garden. ‘You don’t need to make an appointment… you just check it out with that lovely lady in reception and she seems to recognise me’. Frank echoes Stuart, and the other respondents, who find intense satisfaction in the ceremonies organised by the hospice, the Evening of Remembering, the memory tree at the hospice, etc. and he will return and pray in the chapel and walk the gardens where he had also got comfort while she was dying.

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______________________________________________________________ 5.

The person reclaimed, “the person” being both the deceased and the bereaved The continuing sense of the person who died, the bond between the deceased and the bereaved, is a deeply contested area. Freud famously argued for the bonds to be severed to allow new relationships to be developed and this has now been consistently challenged in the recent period by those 32 33 whose interest is in exploring how grieving actually works and the multiplicity of ways that the dead stay important in the lives of their mourners. This has also been important in the developing work of counsellors/psychotherapists,34 including Nell, in this volume, who develops ‘the saying hello’ metaphor.35 As has been noted above, Anne found her mother’s dying very difficult, she was shocked by ‘the physical processes’ and ‘couldn’t believe it was so awful… like a horror movie’. Her way of managing was in a way to distance herself, to stay focused on the care taking tasks and tell herself ‘it’s not her, it’s the experience of her death’. And what then became important was bringing back the son to her mother’s deathbed and this process of bringing together continued with the funeral, which the son/brother attended and marked his acceptance back into the family: ‘there was quite a reconciliation’. The contact has continued with Anne commenting that ‘we are trying to be friends, we have a lot of catching up to do’. Anne is changing things in her life which seem connected with her, and has ‘a lot of energy’ for this. She reflects on, and works with, the meaning of people’s life stories in her own work within the caring profession and the impact of reading her mother’s diaries leads her to want to write about and explore this more. She paints and sculpts and the walls of her flat are full of these, one is ‘the angel of death’. Sophie gets comfort from the continuing sense of her husband’s presence, initially in the family home, where she had been brought up and had lived her married life, but she then felt forced to sell it because it held too many memories. But now in her home she has still items of furniture that he had made, the coffee table, for example, on which I record the interview and she feels ready to display photos of her husband and in the living room hangs his portrait, painted by her son. He has, then, a very physical presence. She has been helped, despite her previous fierce resistance, by a counsellor from the hospice who has helped her with her difficulty with not being able to mention his name without crying. Now she has found a way to keep him in her heart ‘continually’, but not in her head. On the anniversary of the death the family always gets together for a meal and she is part of a newly found group for bereaved partners. And she is also ready for the possibility of being able to go out and find a new partner, ‘nothing could replace (names husband) but I miss being touched and I need to be loved’.

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______________________________________________________________ Frank had also been resistant to counselling, but was then assisted to move on from a deeply depressed and suicidal place. The counsellor worked from photos to paint a ‘happy memories’ scene, now hanging in his front room, and showing a field with trees (taken from one holiday photo), some horses, from another holiday album, and a castle. In the middle is a slender figure in jeans and a scarf around her neck. And Frank returns to the hospice for the Evening of Remembering where he meets a widow and they have now started a relationship which he finds satisfying because Frank can talk about his wife as she can about her husband and both can honour each of their losses. It is important for Frank that the woman knows that she ‘is still a very big part of my life, my wife, but life goes on’. Malcolm’s father had died in a car crash many years earlier and now he finds that he can recall the details of his death, and his life, especially since becoming a father himself. A further influence is seeing his daughter who ‘is like her (the mother) in so many ways’. Malcolm describes how he still has a sense of his mother’s continuing impact on how he is, his attitudes and his behaviour. Tania feels frustrated and bitter, still, two years after the death, angry at the lack of a diagnosis and what she regards as the unnecessary pain. Immediate family tensions have not been eased since she has a seriously ill father and her brother does very little supporting him or her. She is also sad that her mother never knew her children but it was her mother’s death which encouraged her and her husband to change their earlier, career orientated life style and start a family. ‘There must be something else… not having children what was the point of that?’ She points to her child: ‘Things that he does reminds me of mum, just events that we did’. The sense of reconstituting families is further reflected in Stuart’s story where his counsellor encouraged him to bring in some photos of his mother and some of his father. ‘I put them on the table and she said “there’s your mum and dad together”. And that… shifted something for me’. He has a younger brother and ‘after the death he and I got much closer’. 6.

Some discussion points It is important, as we reach for some final thoughts, to recognise that there are always a whole range of different narratives that can be told of the same story. But the stories the research respondents tell are true for them, and represent an important truth for us also so that we can honour and allow in some understanding as to how and why such consistent themes emerge. Particularly striking is the anger felt towards the doctors, whether GPs or in the hospitals, whereas there is almost unqualified appreciation of the hospice care and here the contrast seems too starkly expressed.

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______________________________________________________________ The core, underlying theme here, I suggest, relates to the place of death in our culture, how we struggle in our individual lives and in society as a whole with what Yalom calls the ‘ever-present conflict between the wish to continue to exist and the awareness of inevitable death’. Usually, Yalom continues, we develop means to ‘elude’ the struggle, we ‘taunt’ it and ‘detoxify’ it through fictional ghost stories or by ‘transforming’ the fear through beliefs in an afterlife.36 In field theory terms, ‘the need is organised’ to not know about mortality, ours or that of those close to us. But it is there, nonetheless. So the immediate response of our respondents is shock when they hear the prognosis of a terminal illness, even though the clinical history is such that usually it might be expected. There is some initial discussion or acknowledgement, Anne’s mother lighting her cigarette, Leonie’s mother question/challenge: ‘I’m not going to be with you much longer’. And then the families settle into a routine of basic maintenance of the difficult and worsening health, all revert to ‘the bottom drawer’ referred to by Frank and physical intimacy replaces verbal intimacy. This is compounded by the prevailing medical ideology which is to battle away at the medical symptoms assuming a cure. But this can only be seen by our respondents as a failure since the patient died. And the treatment and the care that is offered is uniformly depicted as both careless and callous: a mixture of misdiagnosis, rushed treatment and unavailable doctors. And the dominant narrative which is held in the field, of fighting the cancer, provokes in the respondents a similar fight response but here deflected and directed at the hospital represented by Malcolm’s’ furious dash round the corridors. The hospice provides a telling contrast. As we have seen, the respondents struggle with the idealised narrative of ‘The Good Death’, especially in terms of ‘the aware death’ where all parties share an openness to the process right to the end. Frank again provides a telling example of this with his wife having final rites administered from behind a door. Nonetheless all find enormous comport in the hospice, the ‘extraordinary’ palliative care nurse (Anne), the ‘vibrant’ atmosphere (Malcolm). And my suspicion is that in terms of the treatment the hospice is neither as awful nor as glowing as they feature in these ‘moral tales’. But the potency and importance of the hospice lies, it seems, in the way that it holds the reality of the dying, acknowledges it in the field, thus allowing the pain, physical and psychological, to be contained. Fighting abates and patients and parents/partners relax into the dying process, even if they have difficulty naming it as such. And the respondents say something else about their experience of the hospice. After the intense process of their loved ones becoming first ‘the ill person’, then ‘the dying patient’, defined by blood counts and pills and operations, so, at the end, ‘she even came back to herself a bit’ (Malcolm). Then the hospice organises various rituals of remembering, an evening

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______________________________________________________________ service, the memory tree, which reinforce other personalised events (usually contrasted with the far less satisfactory formal events in cemeteries and crematoriums. Subsequently we have a host of reconstituted families, a brother reclaimed (Anne), children born (Tania), new relationships happening (Frank) or anticipated (Sophie) even while the pictures of their dead spouse are displayed on their living room walls. In various, complex ways, then, a new narrative is told and the ‘patient’ is re-entering the field as a person again, their earlier persona recalled and valued as well as mourned. Leonie, whose mother had been lame throughout her life, with hip replacement operations and a kidney removed prior to the cancer that finally killed her, ended her interview with the following which seems an apt conclusion to this chapter. I had a wonderful dream… about six months after she died. I’m sitting on a train looking at the landscape, Surrey or Kent or somewhere. And my mother all her life maintained a naughty little child, it was very apparent at times, adventurous, and the thought just flipped through my head, you can just go through those trees bow and run… Wherever you are now, whether in some spirit realm, you are not disabled now. You can run and jump and play, all those things… Yes, so she’s around and yes, she’s peaceful.

Notes 1

J. Weinstein, “A Shoulder to Support Me, Not a Shoulder to Cry On:” The Indicators of Recovery Following Bereavement, the Role of the Hospice, and Especially the Contribution of Counselling in Assisting that Process. A Comparative Study of Two Groups of the Bereaved, One Which Has Received Counselling and One Which Has Not. Unpublished, 2003. 2 B. Morrison, And When Did You Last See Your Father? Granta Books, London, 1998, p. 203. 3 B. Morrison, “Secrets and Lies,” Sunday Observer, 3.10.04. 4 J. Swift, Last Orders, Picador, London, 1996. 5

A. Sebold, The Lovely Bones. London, Macmillan, 2003. W. Self, How the Dead Live. Penguin Books, London, 2000. 7 A. Leiblich et al., Narrative Research: Reading, Analysis & Interpretation, 6

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______________________________________________________________ Sage, Thousand Oaks, 1998. 8 D. Silverman, Doing Qualitative Research, a Practical Handbook. Sage, London, 2000. 9 J. McLeod, Narrative and Psychotherapy, Sage, London, 1997 10 D. Tantum, Psychotherapy and Counselling in Practice: A Narrative Framework, Cambridge University Press, Cambridge, 2002. 11 E. Polster, A Population of Selves: A Therapeutic Exploration of Personal Diversity, Josey-Bass, San Francisco, CA, 1995. 12 T. Greenhalgh and B. Hurwitz, Narrative Based Medicine, Dialogue and Discourse in Clinical Practice, BMJ Books, London, 1998. 13 G. Bolton, “Stories of Dying: Therapeutic Writing in Hospice Care”, in Narrative-Based Medicine, Dialogue and Discourse in Clinical Practice edited by Trisha Greenhalgh and Brian Hurwitz. 1998, pp. 45-54. 14 R. A. Neimeyer and A. Anderson “Meaning Reconstruction Theory” in Loss and Grief, a Guide for Human Services Practitioners, ed. N. Thompson, Palgrave, Hampshire, 2002, p. 56. 15 Greenhalgh and Hurwitz, op. cit., p. 13. 16 F. Furedi, Therapy Culture, Cultivating Vulnerability in an Uncertain Age, Sage, Thousand Oaks, CA, 2003 17 T. Walter, On Bereavement, the Culture of Grief, Oxford University Press, Oxford, 1999. 18 J. Lawton, The Dying Process, Patients’ Experiences of Palliative Care. Routledge, London, 2000. 19 D. Silverman, op cit., p. 35. 20 P. Clarkson and J. Mackewn, Fritz Perls. Sage, London, 1993 21 J. Zinker, In Search of Good Form, Gestalt Therapy with Couples and Families, Josey-Bass, San Francisco, CA, 1994, p. 45. 22 G. Yontef, Awareness, Dialogue and Process: Essays on Gestalt Ther-apy, Gestalt Journal Press, Highland, NY, USA, p. 297. 23 F. Perls, The Gestalt Approach, and Eye Witness to Therapy. Bantam, New York, 1976, p. 3. 24 P. Laugani, It Shouldn’t Happen to a Patient: A Survivor’s Guide to Fighting Life-threatening Illness, Whiting & Birch, London, 1992, p. 13. 25 S. Sontag, Illness as a Metaphor, Penguin Books, Harmondsworth, Middlesex, 1993. 26 E. Becker, The Denial of Death, The Free Press, New York, 1973, p. ix. 27 H. Danbury, Bereavement Counselling Effectiveness: A Client-Opinion Study, Avebury, London, 1996, p. 135.

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______________________________________________________________ 28

R. Smith, “Death, Come Closer,” in: British Medical Journal, No. 7408, 26.07.03, p. 169. 29 J. Lawton, op. cit., p. 182. 30 M. DeHennezel, Intimate Death, How the Dying Teach Us How to Live, Little Brown & Company, Boston, 1997. 31 T. Walter, op cit., p. 144. 32 D. Klass et al., Continuing Bonds, New Understandings of Grief, Taylor & Francis, Philadelphia,1996. 33 T. Walter, op. cit. 34 B. Hellinger, Insights, Lectures and Stories, Carl-Auer-Systeme Publishers, Heidelberg, 2002. 35 W. Nell, “The Saying Hello Metaphor as Alternative Approach to DeathRelated Counselling”, Present volume, 2009. 36 I. Yalom, Love’s Executioner, and Other Tales of Psychotherapy, Penguin, Harmondsworth, 1989, p. 3.

References Becker, E. The Denial of Death, The Free Press, . New York, 1973. Bolton, G. “Stories of dying: therapeutic writing in hospice care”, in: Narrative-Based Medicine, Dialogue and discourse in clinical practice edited by Trisha Greenhalgh and Brian Hurwitz. 1998, pp. 45-54. Clarkson, P. and Mackewn, J., Fritz Perls. Sage, London, 1993. Danbury, H., Bereavement Counselling Effectiveness: a client-opinion study, Avebury, London, 1996. DeHennezel, M., Intimate Death, How the Dying Teach Us How to Live, Little Brown & Company, Boston, 1997. Furedi, F., Therapy Culture, Cultivating Vulnerability in an Uncertain Age. Sage, Thousand Oaks, CA, 2003.

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______________________________________________________________ Greenhalgh, T. and B. Hurwitz, (ed.). Narrative Based Medicine, Dialogue and discourse in clinical practice. BMJ Books, London, 1998. Hellinger, B., Insights, Lectures and Stories, , Carl-Auer-Systeme Publishers, Heidelberg, 2002. Klass, D., P. R. Silverman and S.L. Nickman, (eds.) Continuing Bonds, New Understandings of Grief. Taylor & Francis, Philadelphia,1996. Laungani, P., It Shouldn’t Happen to a Patient: A Survivor’s Guide to Fighting Life-threatening Illness. Whiting & Birch, London, 1992. Lawton, J. The Dying Process, Patients’ Experiences of Palliative Care. Routledge, London, 2000. Lieblich, A., R. Tuval-Mashiach and T. Zilber, Narrative Research: Reading, Analysis and Interpretation. Sage, Thousand Oaks, 1998. McLeod, J. Narrative and Psychotherapy. Sage, London, 1997. Morrison, B., And When Did You Last See Your Father? Granta Books, London, 1998. ___ , “Secrets and Lies,” Sunday Observer, 03.10.04. Nell, W. “The Saying Hello Metaphor as Alternative Approach to DeathRelated Counselling. Present volume. Neimeyer, R.A. and Aderson, A., “Meaning Reconstruction Theory” in Loss and Grief, a Guide for Human Services Practitioners, ed. N. Thompson, Palgrave, Hampshire, 2002. Perls, F., The Gestalt Approach, and Eye Witness to Therapy. Bantam, New York, 1976. Polster, E., A Population of Selves: A Therapeutic Exploration of Personal Diversity, Josey-Bass, San Francisco, CA, 1995. Sebold, A., The Lovely Bones. London, Macmillan, 2003. Self, W., How the Dead Live. Penguin Books, London, 2000.

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______________________________________________________________ Silverman, D. , Doing Qualitative Research, a Practical Handbook. Sage, London, 2000. Smith, R., “Death, come closer,” in: British Medical Journal, No. 7408, 26.07.03. Sontag, S., Illness as a Metaphor. Penguin Books, Harmondsworth, Middlesex, 1993. Swift, J., Last Orders. Picador, London, 1996. Tantum, D., Psychotherapy and Counselling in Practice: a Narrative Framework. Cambridge University Press. Cambridge, 2002. Walter, T. On Bereavement, the Culture of Grief. Oxford University Press, Oxford, 1999. Weinstein, J. “Teaching and Learning about Loss,” In Loss and Grief, a Guide for Human Services Practitioners edited by Nick Thompson, Palgrave, Hampshire and New York, 2002 pp. 193-207. ____ . “A Shoulder to Support Me, Not a Shoulder to Cry On:” The Indicators of Recovery Following Bereavement, the Role of the Hospice, and Especially the Contribution of Counselling in Assisting that Process. A Comparative Study of Two Groups of the Bereaved, One Which Has Received Counselling and One Which Has Not. Unpublished, 2003. Yalom, I., Love’s Executioner, and Other Tales of Psychotherapy. Penguin, Harmondsworth, 1989. Zinker, J., In Search of Good Form, Gestalt Therapy with Couples and Families. Josey-Bass, San Francisco, CA, 1994.

Death and the Sense of Self Chris J. Onof Abstract In this chapter, I argue that there is an important sense in which our mortality forms a key aspect of our sense of self. However, a grasp of death as an essential feature of our human life cannot suffice to our being authentic. I first examine Lucretius’s arguments for the view that we should not be afraid of death. In line with his critics, I conclude that, on the contrary, death is an ‘evil’. In a second step, I examine the necessity of mortality for a sense of self. I consider Williams and Malpas’s approaches to this issue, and examine the arguments based upon the possibility of immortality. In a third step, I query the claim that death provides a sufficient condition for authentic self-understanding. Here, the focus is upon Heidegger and his understanding of authenticity in terms of death. This, I argue, is too restrictive as it grasps life merely in terms of its closure. The discussion of this issue raises broader themes in the philosophy of Heidegger which are addressed at the end of the paper. The paper concludes by summarising the particular rôle of death as both an evil, and providing a condition for authentic self-understanding. Keywords: death, authenticity, self ***** In the following, I shall first ask to what extent death is not a human ‘good’. Having argued for the claim that death is an evil, the sense in which mortality is nevertheless necessary for living one’s life will be discussed. This claim can take different forms, from the necessity of a finite life so as to avoid a paralysing sense of boredom, to a claim about how death is at the heart of a notion of authenticity. I shall argue that the necessity of death is connected with the value of time. The further move that Heidegger and others want to make, namely to understand a grasp of our mortality as in some sense sufficient for authenticity is examined critically. I shall conclude with some reflections upon why this move is problematic.

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______________________________________________________________ 1.

Death as an Evil Lucretius formulates two arguments designed to show one ought not to be concerned by the prospect of death since it is not an evil. More specifically, he claims that one ought not to be worried about being dead, or about when one will die. Let us examine his arguments. Following Epicurus, Lucretius first argues that the fear of death is irrational, for it is the fear of experiences that one would have after death. But, since there are no such experiences, this fear has no object. Epicurus phrases this by saying that where we are, death is not, and vice-versa. Lucretius’s second argument focuses upon the time during which one is dead. This is clearly infinite and independent of the time of death: any infinite duration is no longer than another. This entails that one should not be concerned about when one dies. It is not just in the Epicurean tradition that the view that death is harmless is argued for. The stoic emperor Marcus Aurelius argues that death only represents a minimal loss, that of the present moment. For, at any point in time, the past is no longer and is therefore already dead in a sense, while the future has no existence1. He concludes that all I lose in dying is the present moment. Insofar as the focus of this argument is the present, and since the present is experienced in the immediacy of consciousness, this is closely related to Lucretius’s first argument. In response to Lucretius’s general strategy of arguing against death as an evil, Nagel seeks to bring out the sense in which life is a good thing.2 As he puts it, Life is worth living even when the bad elements of experience are plentiful, and the good ones too meagre to outweigh the bad ones on their own. The additional positive weight is supplied by experience itself.3 Death is then an evil insofar as it amounts to a deprivation of life. Nagel rightly points out that the fact that death (or the state of being dead) is not experienced when it occurs is no hindrance to describing it as an evil. For, it is not in this experiential sense that ‘evil’ is to be understood. If someone is reduced to a vegetative state, even if she is quite content in this state, this will be judged to be an evil. This is because ‘evil’ is here defined with respect to the potentialities formerly possessed by the individual. So, it is the loss and non-actualisability of potentialities which are at stake here. And, clearly, death represents a straightforward case of such loss. This counter-argument is powerful, in particular since it brings out what is viewed as ‘evil’ in death, whether or not it is one’s own death which is at stake. The death of our relations or of celebrities is evil insofar as it destroys their

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______________________________________________________________ potential, for further contributions to our lives (through entertainment, enlightenment and so on) or further time shared with them for instance. Although this argument has something intuitively correct about it, one might still query the assumption that life is a good. Indeed, a utilitarian will ask about the utility of life itself. Nagel does in fact indirectly touch upon this issue, as he asks how possible a potentiality must be for its deprivation to be an evil. If one considers an individual whose ability to move and to communicate is severely restricted, and who does not recognise his relatives or his friends, one may ask which potentialities he is actually being deprived of through death. If one finds it difficult to answer this question, it is however not only because of the paucity of the individual’s quality of life, but also because our objective point of view seems limited here. The key issue would rather seem to be the extent to which the subject views a possibility as being a possibility. But in what sense does the subject view anything as a possibility? Only insofar as he could possibly consider wanting to bring about its realisation does he view it as a possibility. And this means that the subject’s desires have to be considered in the argument. In fact, Lucretius himself assumes that “the satisfaction of desire, and possession of the praemia vitae are good things”.4 It is this fact which Williams sees as the key to a conclusive rebuttal of Lucretius’s first argument. For, together with the fact that death can only be a hindrance to the satisfaction of desires, this entails that death amounts to the deprivation of a good thing, and therefore that it is an evil. We note that this also addresses Marcus Aurelius’s argument which relies upon ignoring the rôle of the future although it is there that the individual’s possibilities lie. It is thus not only the present moment which is lost in death. It is a vast realm of future possibilities. Williams’s conclusion however only obtains if there are desires that are not conditional upon one’s being alive. Otherwise, the very value of one’s life could be questioned. The suicide certainly has desires (e.g. to eat, avoid pain) insofar as she is alive, but if all these are merely conditional upon her being alive, she can simultaneously judge her life not worth living and death a welcome release. That there are in fact such desires that are not conditional upon being alive, follows from a key claim of Williams’s moral theory. This is that a human life is characterised by the existence of categorical desires. Here, the term ‘categorical’ is used to denote the fact that they do not depend upon any condition for their existence. It may at first sight seem circular to appeal to desires which are not conditional upon being alive to account for why death is an evil. For one way of exhibiting the existence of such desires would be to point to the fact that, given that death is an evil, it can only be because it thwarts such desires. But in fact, the introduction of such desires in Williams’s philosophy is motivated

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______________________________________________________________ on other grounds. Such desires play a specific rôle in Williams’s examination of specific ethical issues such as the ground of morality. Additionally, the claim that there are desires which are not conditional upon being alive is quite plausible. To see this, one only need consider basic facts about the phenomenology of desire. It is thus rather difficult to imagine one’s deepest motivations for the projects we pursue to be simply conditional upon being alive. The reason is that the required motivational force cannot be given to that which is merely conditional. For any force a motive may have would be undercut by considering the possibility that the condition is not realised. I would therefore argue that a fundamental aspect of motivation is that it cannot be entirely conditional, i.e. that some aspect of the motive be unconditional.5 Turning briefly to Lucretius’s second argument, Williams astutely point out that it covertly contradicts the first. For it implies that, were the time during which one is dead to be finite, it would not be the case that the time of death is of no concern. But this can only be the case if being alive is valuable and to be preferred to being dead. In summary, conditional upon the existence of categorical desires as characteristic of human life, Williams has thus shown that death is an evil. An important apparent consequence of this result is that immortality is preferable to mortality.6 2.

Immortality Williams is however keen to show that death’s being an evil only entails that an immortal life would be preferable to a mortal one, other things being equal. And Williams carries out a thorough thought experiment into what it might be like to be immortal, to show that this is not the case. This leads him to paint a pretty bleak picture of the life of an immortal, one which is dominated by boredom. Essentially, immortality would “kill desire and consist in the death of it”.7 As a result, the most basic hope for the continuation of life, a hope carried by categorical desires, is not coherent since the most direct response to it, i.e. immortality understood as an indefinite extension of one’s current life, would destroy these desires. Let us examine Williams’s case against the desirability of immortality. Williams constructs his argument around the case of a character, EM, from a play by Capek. EM becomes an immortal at the age of 42. And the action in the play takes place when EM has reached the age of 342. Williams imagines that EM became immortal by remaining throughout as she was at the age of 42 in terms of her mental and physical abilities. And the play portrays her condition as one dominated by boredom. This results from her feeling that she has already experienced everything there is to experience. Because the particular story of EM’s immortality cannot ground a general claim about immortality, Williams also considers other ways in which EM

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______________________________________________________________ might have become immortal, but there is no space to examine these in detail here. Rather, I would like to consider what is assumed in centring the argument on the example of EM. First, we are asked to consider a person whose life has extended far beyond the currently typical lifespan. That is, although she knows she is immortal, this does not seem to be the cause of her distress. Rather, this distress results from her extremely long lifespan. Were she to find out she will die in another thousand years, this would, I believe, not make her feel any better now. So it is in fact doubtful whether the discussion is really about immortality at all here. Second, whether or not it is ultimately about immortality, one might wonder whether the intuition developed in the play would meet with unanimous assent. A cursory glance at views which are, for instance, aired by members and supporters of the aptly named Immortality Institute8 suggests at least the need to consider this intuition more carefully. The problem experienced by EM appears to be that nothing new is available to keep her desires alive. But the wealth of EM’s existing experience will always be limited, while the possibilities which constitute EM’s world are always expanding. This is because, even if there were, at some point in time, no particular technological progress for instance, such progress can be expected and indeed worked towards. The world will also be forever populated by new generations9, and communication with those who are not yet born cannot be dismissed as something that is bound to develop entirely upon only too familiar lines. Williams talks of “the repeated patterns of personal relations” 10, but this surely overlooks what is unique about every personal relation. More specifically, one can give a specific instance of a desire that is potentially everlasting. This is the desire to acquire knowledge. This could be very general, or more focussed, e.g. upon science. There is no reason to believe that such a desire would wither: what is newly discovered, insofar as it is novel, must precisely have features which were not predictable on the basis of past knowledge, and would therefore satisfy some of the quest for knowledge, enough to sustain it into the future. Indeed, this desire would precisely fulfil the condition that Williams argues cannot be realised for any form of immortality: this is that the state in which I survive should be one which, to me looking forward, will be adequately related, in the life it presents, to those aims which I now have in wanting to survive at all.11 Referring to Hampshire’s views on the virtues of intellectual activity,12 Williams does discuss “eternal existence as occupied in something

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______________________________________________________________ like intellectual enquiry”,13 but sees it as involving one’s losing oneself in being absorbed in an activity. But why is this losing oneself? What if this just is a key categorical desire defining who I am? Third, the issue of immortality raises that of the after-life. The claim that immortality is not desirable is, at least in part, meant to address the hope for an after-life which is harboured by the faithful. And indeed, we note that Williams’s essay was originally one in a series of lectures “on the immortality of the soul or kindred spiritual subject”.14 I believe the intention is therapeutic: if you believe in an after-life, you would appear to be on shaky ground, as the rise of materialism would seem to indicate. But the sudden discovery your belief that an after-life is likely to be untrue can be mitigated by the consideration that the after-life was, after all, not a desirable state of affairs; or so the argument would go. But, even assuming that the arguments against an after-life are stronger than they were, say, three hundred years ago,15 then this way of thinking still relies upon being able to cover enough forms of immortality to satisfy the believer of its undesirability. And here, one must wonder how Williams has come to the conclusion that he is able to provide such an all-encompassing argument. The answer must lie in his requiring that immortality preserve one’s identity and in his having a theory about personal identity, namely his defining the sense of self in terms of categorical desires. Together with the view that nothing could be sufficient to sustain such desires eternally, he is able to conclude to the undesirability of immortality. But, he does not allow these desires to evolve, for else the identity of the self is lost, on his account. This seems to me questionable, as there could very well be something more fundamental characterising such desires in their constant evolution for instance. Let us summarise: Williams’s discussion of immortality in ‘The Makropulos case’, although originally intended to deal with the idea of the after-life, is actually directed at the indefinite extension of human life, and do not, in fact, address the issue of the after-life. Williams’s arguments have been found to be flawed insofar as they purport to address the issue of the undesirability of immortality in general. What force they have is ultimately derived from a questionable understanding of the essence of being human as defined by a set of unchanging categorical desires. One is left wondering what is to be said about immortality as opposed to a very long mortal life. I think Williams’s appeal to a notion of boredom is relevant when aimed at what is problematic with the notion of an immortal life in this world, as opposed both to a very long mortal life on the one hand, and to other-worldly immortality on the other. For it does seem intuitive, that the prospect that there is no termination to one’s life would, from the very start of the period of immortality, affect the way in which we behave. But to specify in what way this intuition can ground an argument,

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______________________________________________________________ requires a further investigation which will, in particular, probe the nature of human desire itself. 3.

Desires Conditional Upon Mortality What Williams is trying to do is ground the undesirability of immortality in what he sees as basic facts about human life. If these facts have not struck us as unequivocal, it may be because the states of affairs that are instantiated therein do not characterise all human lives, but only some. It is here that Jeff Malpas’s analysis is helpful. As we shall see, his descriptive analysis of that which characterises a certain type of human life brings out the sense in which mortality is a requirement. Malpas does not draw on Williams’s claim that human beings are characterised by categorical desires.16 But he does take our “care and concern” for what is important to us as key to describing our human condition; though this is a different vocabulary, this entails in particular the central rôle of a type of desire. Unlike Williams, however, he argues that these desires’ objects should be brought into focus. Malpas claims that “care and concern is essentially geared towards caring for those things (…) that are transient and fragile”.17 According to Malpas, it becomes very difficult to desire anything that is more abstract in the sense that it is less connected to the order of time. Ultimately, something timeless could not constitute an object of desire. Insofar as one defines oneself in terms of such objects which are essential to our projects, one can only make sense of oneself in this way if one is mortal. One could illustrate this in terms of a grasp of the value of time which connects the desiring subject to the object. This grasp accounts for the fact that the subject views something as a desirable object now for her. Don Juan views a woman as desirable insofar as she is to be conquered now (or in the foreseeable future). But were he immortal, he would not relate to women in this way for the future will hold more (potentially infinitely more) opportunities: the moment loses its value. More generally, the source of what Williams describes as boredom is to be found in the conundrum which faces the immortal. This is the question of whether there is a reason to do something today rather than tomorrow. On the one hand, the answer that there is never any such reason entails that the act can never be properly motivated. On the other hand, it is not clear whether there can be an answer that singles out a particular day rather than another. That is, the relation to time has become problematic. This provides an interesting perspective on the nature of the boredom that Williams alludes to, since what was described as the withering of our categorical desires can now be seen as the impossibility of experiencing the concern with which we go about the projects that we care for. This, in turn, is the consequence of the impossibility of desiring anything

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______________________________________________________________ if time loses its value. This suggests that what underpins any desire is therefore the value of time itself. If time is unlimited, it loses its value, together with everything else we could relate to as desirable. This argument relies however upon the idea that one makes sense of oneself in terms of one’s projects, and this is where it involves the identification of a certain way of life. This requires further clarification. Malpas understands the having of a life as characterised “through the idea of a certain unity of projects”.18 In so doing, he distinguishes “having a life” from merely “being alive”. “Having a life” requires, additionally, that one take a certain perspective on that life, one which makes sense of it as a unity. Typically, such a perspective can be understood in terms of narrative: I have a life insofar as I view my life as the unfolding of a story of which I am the narrator. Because this understanding of what it is to have a life involves a self-understanding that is absent from Williams’s focus upon categorical desires, it enables us to account for the requirement of mortality as called for by the very possibility of such an understanding. The problem with immortality, pace Sartre, is that it would appear impossible to give an unending life the kind of unity that a narrative or indeed any other form of self-understanding requires. This is because the unification can only be achieved if one can bring that which is to be unified into a whole. And as Malpas rightly asks, “how could one conceive of a life without end as constituting a whole?”19 With this understanding of life as unified by the subject, each moment in time acquires significance through its belonging to the unified horizon of the individual’s life, hence the value of time. This brief account shows how Malpas provides a perspective on the requirement of mortality that sheds light upon Williams’s claims about the boredom of immortality. There is a question which is left open, of course, namely the question about the source of the requirement which enjoins one to ‘have a life’. An answer to this question would seem as philosophically problematic as identifying a ground for ethics. However, one could go some way to addressing the issue by viewing the fact that this question is raised at all as related to what it is to be human. Before examining this avenue in more detail, it is important to note however that Malpas seems to want to go further than just claim that mortality is necessary for a certain kind of self-understanding. For Malpas, “to have a life (…) is indeed to be capable of death”.20 This new claim, which is not substantiated or further developed by Malpas, needs clarification. For if ‘capable of death’ means ‘mortal’, then ‘to have a life’ is ‘to be alive’, which contradicts Malpas’s earlier distinction between these two expressions. If ‘to be capable of death’ is therefore more than being mortal, it would seem to

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______________________________________________________________ have a normative dimension. And Malpas’s claim is then that it constitutes a sufficient condition for ‘having a life’. I think a first step towards understanding Malpas’a stronger claim must involve strengthening the claim of the necessity of mortality. The idea is that it cannot just be the fact that one is mortal that is necessary to ‘having a life’. Since ‘having a life’ involves some attitude point of view on this life, it would appear to be necessary to have some awareness of one’s mortality. This is in fact implicit in Malpas’s argument as we have presented it insofar as the awareness of the end is what enables the whole to be grasped in a unity. And this can also be formulated in terms of value. As Popper puts it, (…) if there were no end to life, life would have no value; that is, in part, the ever-present danger of losing it which helps bring home to us the value of life.21 That is, the value of life, and therefore the possibility of ‘having a life’ require an awareness of the “ever-present” possibility of death. To only be able to appreciate the value of life by making this possibility more vivid, e.g. through the pursuit of risky activities for their own sake, indicates rather a misunderstanding that death is simply always a possibility. The examination of Heidegger’s notion of Being-towards-death below will expand this idea. With such a notion of awareness of death, it is easier to see what Malpas means by ‘being capable of death’, and indeed why he might wish to see this as defining a sufficient condition for ‘having a life’ insofar as it involves an awareness which accompanies our whole life. 4.

Heidegger’s Being-towards-death The two issues raised at the end of the previous section, i.e. that of the ground for the requirement to ‘have a life’, and the question of the sufficiency of some condition related to mortality, can best be examined by returning to the close connection between mortality and the value of time. This is the cue for looking at what the author of ‘Being and Time’ has to say about the rôle of death in our lives. By shedding further light upon what this condition might be, it will enable us to address the issue of its purported sufficiency for ‘having a life’, and to understand to what extent the issue of whether I ought to ‘have a life’ is fundamentally connected to my being human. Heidegger makes the strong claim that to be authentic is to grasp the constant proximity of death as that “possibility which is one’s ownmost”.22 In so doing, Heidegger insists, however, that he is not making a normative claim. He is just describing a way of being which he calls “authentic”. Let us examine Heidegger’s claims in more detail.

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______________________________________________________________ In division I of ‘Being and Time’, Dasein (approximately, Heidegger’s way of referring to a human being) has been introduced as that which is self-interpreting. Dasein is characterised by the fact that ‘In its very Being, that Being is an issue for it’.23 In division II, what needs to be established is whether/how it can interpret itself in a way which brings out its character of Dasein. If it interprets itself in this way, it can be said to have made its own that which constitutes it as Dasein. That is why this way of being is described as authentic or “eigentlich”, where ‘eigen’ means ‘own’. What does Dasein need to be able to interpret itself thus? If we are to live authentically, given we are self-interpreting beings, we must have an authentic interpretation of ourselves. Given that we need an interpretative background against which we can thus interpret Dasein, this requires that we find a way of grasping Dasein as a whole, against a background involving an understanding adequate to the phenomena. Therefore, rather than showing that ‘to have a life’ is a requirement for all human beings, Heidegger shows how the asking of the question of how to lead one’s life is constitutive of what it is to be human. Consequently, Heidegger goes beyond the issue of the normative value of the requirement to ‘have a life’, by exhibiting what it means to be asking such a question in the first place. Heidegger then looks to the phenomenon of death to shed light on how to grasp one’s Dasein as a whole. Death is a termination, but in death, Dasein is no longer. So it cannot represent a state of wholeness of Dasein. However, to anticipate one’s death as one’s own possibility is to grasp it as one which is absolutely certain and also one’s “ownmost possibility”.24 Heidegger’s notion of possibility is not that of logical possibility. Rather, “Dasein is in every case what it can be”,25 so that to be in the world is to have possibilities open to one. The expression ‘one’s ownmost possibility’ refers to the sense in which my death belongs entirely to me. Unlike other possibilities which may or may not belong to one’s world as a contingent fact, death necessarily is one’s possibility, and in it, one’s own Being is at issue. In anticipating one’s death, therefore, one anticipates the “closest” possibility one has as a certainty. Insofar as it is the closest possibility, it “discloses also all the possibilities which lie ahead of that possibility”, so that the anticipation of death “includes the possibility of taking the whole of Dasein in advance in an existentiell manner”.26 In other words, in anticipating this final possibility, Dasein lets all other possibilities which lie ahead of it appear as part of a whole. And this, Heidegger takes as the wholeness which defines authenticity. 27 He is thus claiming that Being-towards-death defines a relation to our mortality that provides a sufficient condition for ‘having a life’ in the sense of what he calls “being authentic”. This relation expounds Popper’s idea of awareness that death is always possible without implying that one should, at every instant, be conscious of death as one’s possibility.

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______________________________________________________________ Rather, one’s behaviour should be informed by such awareness, in much the same way as it is, for instance, informed by moral and other values. It is therefore the notion of the constant proximity of the end which is to provide the key to its wholeness. Is this account convincing? Consider an analogy, a conversation between two people. The wholeness of such a conversation is not grasped by constantly keeping its termination in view. This will never provide a grasp of that characteristic of the conversation that makes it into a whole. The fact that the conversation cannot go on for ever certainly accounts for its having a focus. But this focus cannot be obtained from the mere requirement of finite duration (even given, of course, the circumstances that form the background of the occurrence of the conversation). This analogy, although necessarily distant (how can one compare a human life to anything else?), suggests that the thin notion of closure does not obviously provide a sufficient ground for the thick notion of wholeness. The concept of closure apparently only defines a formal sense of wholeness, not a substantive one. It is necessary, but not sufficient. Heidegger however claims that this formal sense identifies the substance of a life’s wholeness. This criticism may seem unfair. After all, Heidegger’s conception of authenticity is richer than this. It draws upon the notion of resoluteness, the “choosing to choose a kind of Being-one’s-self”,28 and Heidegger stresses that indefiniteness necessarily belongs to resoluteness. Thus, “only in a resolution is resoluteness sure of itself”. 29 This means that only in actually choosing a way of Being oneself is one actually being authentic. To use Heidegger’s jargon, this is an existentiell, and not an existential matter. About the content of such a choice Heidegger has therefore little to say, but for the remark that to the question of what Dasein is to resolve upon, the answer is: “Only the resolution itself can give the answer”.30 So, in effect, it is only through being a certain Dasein that one can find out what the content of one’s authentic resoluteness is. The problem is that such a neglect of the philosophical importance of the content arguably leads to the neglect of the issue of value. Let us examine this issue more closely. Heidegger claims that authenticity and inauthenticity are simply two different ways of being Dasein31: he never claims that an authentic life can be said to be preferable to a non-authentic one. Even if this position seems difficult to sustain, and certainly diverges fundamentally from other existentialist understandings of the concept of authenticity (e.g. Sartre’s), it is true that it is not Heidegger’s task in the framework of the ontological analysis of Dasein to introduce evaluative considerations. Moreover, we have seen how he explicitly manoeuvres beyond this issue of normativity by focussing upon the ontological question of Dasein having the kind of being characterised by the asking of the question about how to lead one’s life. However, this still leaves

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______________________________________________________________ open the important issue of whether a distinction of value can be established among different possible contents of authentic lives. Heidegger’s silence on this issue, insofar as, on his account, there is nothing more that is to be said within the ontological analysis of Dasein about the content of an authentic life, entails that there is therefore nothing more to be said philosophically about this issue. This follows from Heidegger’s view that the method of philosophy is phenomenological and that all phenomenology, properly understood, is ontology32. But the consequence of such a silence on evaluative matters is that it is well nigh impossible for Heidegger to consistently make moral judgements which are thereby claimed to be true. And one may speculate whether this accounts for Heidegger’s notorious silence over the Holocaust. This is however not the place to examine this complex issue. Rather, let us note that the focus upon Being-towards-death reflects Heidegger’s interest as lying in the conditions for authenticity, with the implication that, given the right attitude of resoluteness, individual Dasein will settle upon its particular way of being authentic. But Heidegger has not shown that the issue of authenticity is settled by defining it in terms of Beingtowards-death. I believe in fact that Heidegger’s focus upon death should be seen as closely linked to his avoidance of any normative questions that would be brought about by confronting axiological questions head on. Defining what makes a life authentic in terms of its relation to its termination provides a convenient way of not having to discuss the value of the content of the life itself. This criticism extends the point made above about Heidegger’s silence on certain moral issues by suggesting that there is a neglect of ethical questions that is more deeply embedded in his philosophy that might at first seem to be the case.33 We shall return to this point below. Note that my questioning whether the exclusive focus upon death is a judicious one to guide the understanding of authenticity is related to the claim that Being-towards-death is limited in its ability to disclose the different structure of Dasein. This claim has been made by other Heideggerian commentators. Thus Lynda MacAvoy shows how anxious Being-towards-Death reveals Dasein as abandoned to its death, but does not reveal the rest of Dasein’s state of thrownness in the world: “the scope of the disclosure [in Division II] is thus narrower than in [Division I]”.34 Her solution is therefore to give more importance to the neglected phenomenon of birth, a move which has its roots in a certain strand of feminist philosophy, instantiated e.g. by Held.35 A problem which however lurks in such approaches that focus upon birth is that, since a human being at birth is arguably not yet a Dasein (it does not, as such, have a world in the sense of Being-in-the-world), birth would also appear inadequate for a proper disclosure of what is essential to being a fully-fledged Dasein.

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______________________________________________________________ 5.

Death, Time and Value This excursion into Heideggerian philosophy has not provided us with a ground for supposing that being in such a way that one displays a proper understanding of one’s mortality is sufficient for ‘having a life’, as opposed to being alive. Rather, it has thrown up some wider issues which can perhaps best be understood by returning to the rôle of the value of time. The important result obtained earlier by examining Malpas’s views and using them to shed light upon Williams’s is that mortality is a necessary condition for our ability to live a meaningful life. Time therefore, in its finiteness, sustains the participation in value that we understand our lives to have. To claim that a certain grasp of our mortality provides a sufficient condition for a meaningful life amounts to claiming that the value which characterises a meaningful life is ultimately reducible to the finiteness of the time allotted to this life. From this result, there is but a step to the conclusion that time is itself the source of value. It would appear that Heidegger wishes to make this kind of philosophical move insofar as he views the meaning of Being as essentially temporal.36 But the ramifications of such a philosophical position are such that it leaves no place for any notion of a value which would be unalterable over time. If time underpins value, then value is temporal through and through. This provides no ground which would seem to allow for the possibility of value judgements which purport to have a validity that is not bound to a temporal location. The ability of such a philosophical position to account for the ethical would thus seem highly questionable. And this confirms our suspicions that Heidegger’s philosophical project has the implication that it does not provide a framework within which one can make sense of the ethical. At this point, I might be criticised for assuming moral realism in my examination of Heidegger’s relation to ethics. That is it seems that I am assuming there are indeed objective moral values. One could, on the contrary, reject moral realism: thus for Simon Blackburn, for instance, it is possible to make judgements about other people’s ethical stances, without positing that such judgements are truth-apt. For Blackburn, there is, as such, no perspective from which one could claim the truth of a moral judgement. And the reason is that ethical values are essentially connected to an evaluator, the agent, so that such a perspective actually makes no sense. But, as Blackburn37 puts it: [No] challenge [to our understanding of ourselves as reliable indicators of value] is (…) posed by the mere actual or possible existence of a different way of taking things. (…) By itself such a personality [who takes things

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______________________________________________________________ differently] poses no threat to my values: it merely invites some kind of regret or condemnation That is, others’ moral stances can be criticised from within the framework of my moral values. Now this would arguably appear to be a possible position for a Heideggerian ethics. That is, within the framework of my way of being Dasein, I have a system of values which enables me to make moral judgements about myself and about others. But first, the problem that such a quasi-realist view of ethics faces is precisely the case of another value system “that cannot be dismissed as inferior”38. That it should not be possible for an ethical theory to reject out of hand a value system that views genocide as a good thing is, I think, at least problematic. Leaving aside a discussion of quasi-realism, it is not clear that we can actually interpret Heidegger in this way. There is in fact no account in his philosophy of the grounds upon which my way of being should allow me to pass judgement upon another’s way of being. Pace Olafson39, the Mitsein which characterises my ontological status among other Daseins does not seem to support the kind of moral evaluation that is here required. For Heidegger clearly states that: all evaluation is a subjectivization, even when it evaluates something positively. It does not let entities be; evaluation grants them validity only as the object of its own action.40 This seems to amount to a critique of the practice of making ethical judgements. And if this is what is meant here, it is the locus of the real problem for Heidegger’s views. 6.

Seeking a Sufficient Condition of Authenticity Aside from these issues of Heideggerian exegesis, it would seem that the attempt to make death into a sufficient condition for an authentic life must be confronted with the claim we examined earlier in the paper, namely that death is an evil. The fact that mortality, which is a necessary condition for living a life, is also what destroys life, suggests that the meaning of one’s life (e.g. as grasped in authenticity) cannot be derived from an individual’s consideration of one’s mere mortality. Additionally, one can ask of any of the features of a mortal life examined above whether, although they are necessary to living a life, one’s life is authentic because of them. Thus, though desirable states of affairs are finite and fragile, do we relate to them because of their finitude and fragility? Although boredom would settle in were my mortal life to be bereft of an end, am I actively engaged in pursuing the projects that define who I am solely

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______________________________________________________________ because of my awareness of my mortality? The latter has not been shown, and if this explanatory claim is untrue, claims of sufficiency of a proper understanding of our mortality for authenticity and a meaningful life are questionable. In conclusion, I would like to suggest that what makes it possible for me to live a meaningful life is a condition that requires my mortality, but cannot be derived from the mere fact I am mortal. Since we have seen that what is experienced as valuable in my life is fragile and destructible, this means that what grounds that which is meaningful in my life is intimately connected with time. If we agree that this ground cannot be derived from time, as I have argued, then some other relation is required. I would here speculate that this exhibits rather the way in which time is the medium through which value is expressed in a human life. That is, whatever the source of the meaning possessed by an authentic life, this is expressed in the form of that which is essentially temporal and perishable in time. This may seem contradictory for surely the source of a value that is timeless ought to be experienced as unchanging in time. But this is true only if this timeless value is directly grasped in time. There is no reason to accept such a hypothesis, and in fact it is more likely that what is of timeless value could not be experienced directly by a being that is essentially ‘in time’. This is meant to be a proposal about the axiological dimension of states of affairs. It is perfectly compatible with our having a rational grasp of timeless ethical principles (for instance, principles of duty). But, when it comes to the states of affairs we value, though these are fragile and will perish, they may reflect a timeless value. The proposal is therefore to seek the timeless as expressed in the temporally perishable. But this is a much broader issue which I only wish to speculate about within the confines of this paper. This selective analysis of the relation between death and the sense of self can by no means exhaust the richness of this topic. But it has served to illustrate how central the topic of the meaning of death for our selfunderstanding, is to broader philosophical issues such as the very possibility of ethical values.

Notes 1

We note that this is not in line with stoicism’s emphasis (e.g. in Seneca’s philosophy) upon considering life as a whole. Incidentally, such an idea of

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______________________________________________________________ wholeness is quite close to twentieth-century notions of authenticity which will be discussed further. 2 Nagel 1977 3 Ibid., 2 4 Williams 1973, 84 5 This is not to say that (all) desires are unconditional. Rather, the nature of a desire may alter conditionally upon circumstances. But, an underlying motivation may be expressed throughout our changing desires. 6 This argument would even have to convince a utilitarian. 7 Williams 1977, 91 8 Immortality Institute 2004 9 I’m ignoring the over-population problem that would result were all these to new generations be immortal! 10 Williams 1973, 90 11 Ibid., 91 12 Hampshire 1972 13 Williams 1973, 96 14 Ibid., 82 15 This is for the sake of argument, since there is arguably no evidence either way about the existence of an after-life. 16 Malpas 2004 17 Ibid., 36 18 Malpas 1998, 132 19 Ibid., 131 20 Ibid., 120 21 Popper 1977, 148 22 Heidegger 1988, 250 (page numbers of ‘Sein und Zeit’) 23 Ibid., 12 24 Ibid., 263 25 Ibid., 143 26 Ibid., 309 27 For all the apparent subjectivity of the focus upon death, “the death of another entails the loss of a locus of presence for the same world that is also mine”, Olafson 1995, 145. 28 Heidegger 1988, 270 29 Ibid., 298 30 Ibid., 298 31 Ibid., 53 32 Ibid., 55 33 Polt 1999

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______________________________________________________________ 34

MacAvoy 1996, 70 Held 1993 36 He is not, strictly speaking, committed to it though, since the meaning of temporality is not reducible to that of time. 37 Blackburn 1996, 86 38 Ibid., 86 39 Olafson 1998, 98 40 Heidegger 1977, 179 35

References Blackburn, Simon. “Securing the nots” in Moral Knowledge, ed. W. SinnottArmstrong and M. Timmons, 82-100 (Oxford: Oxford University Press, 1996) Hampshire, Stuart. Freedom of Mind (Oxford: Clarendon Press, 1972) Held, Virginia. Feminist Morality: Transforming Culture, Society & Politics, (Chicago: University of Chicago, 1993) Heidegger, Martin. “Brief über den Humanismus” in Wegmarken (Frankfurtam-Main: V. Klostermann, 1977) Heidegger, Martin. Being and Time, (Oxford: Blackwell, 1988) Immortality Institute, eds. The Scientific Conquest of Death. Essays on Infinite Lifespans (Libros En Red, 2004) MacAvoy, Lynda. “The Heideggerian bias towards death: a critique of beingtowards-death in the disclosure of human finitude”, Metaphilosophy, 27 (1996) Malpas, Jeff. “Death and the Unity of a Life” in Death and Philosophy, ed. J. Malpas and R.C. Solomon, (London: Routledge, 1998) Malpas, Jeff. “The discomfort of strangeness”, The Philosophers’ Magazine 27-3 (2004)

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______________________________________________________________ Nagel, Thomas. Mortal Questions (Cambridge: Cambridge University Press, 1977) Olafson, Frederick A. What is a Human Being (Cambridge: Cambridge University Press, 1995) Olafson, Frederick . Heidegger and the Ground of Ethics. A Study of Mitsein (Cambridge: Cambridge University Press, 1998) Polt, Richard, Heidegger: an Introduction, (London: UCL press, 1999) Popper, Karl (1977) “How I see philosophy”, in Philosophers on Their Own Work, ed. A. Mercier and M. Svilar (Berne and Frankfurt am Main: Peter Lang, 1977) Williams, Bernard, Problems of the Self (Cambridge, Cambridge University Press, 1973)

Political Murder on the German Opera Stage Masagniello Furioso, Günther von Schwarzburg and Rienzi Karl Traugott Goldbach Abstr act This chapter examines the evolution of the dying scene in the German opera in the 18th and 19th century. Besides general information on the development of the dying scene this is to be demonstrated quoting the example of political murder in three representative operas. Like most German operas of the late 17th and early 18th century Masagniello furioso by Barthold Feind and Reinhard Keiser primarily shows the way leading to the death. In the late 18th century authors became interested in the gradual decline of the dying person. Therefore, Günther von Schwarzburg by Anton Klein and Ignaz Holzbauer ends with an extended dying scene. In Rienzi by Richard Wagner not only the three most important figures die in the end but also the stage decoration is destroyed in a spectacular scene. Keywor ds: representation of death, dying scenes, opera, Germany *****

Bar thold Feind and Reinhar d Keiser: Masagniello Furioso The turn from the 17th to 18th century was the first flourishing time of the German opera. Since in this time a lot of operas adapted Italian and French librettos, this section begins with a few comments on the development of the opera in Italy and France. The first Italian operas belonged to the dramatic genre of the pastorale. According to Florian Mehltretter who calls the early Italian opera an “impossible tragedy”, the known musical genres used shorter metric structures than the tragedy. Insofar an opera based on the tragedy would have to use verses which were - according to the contemporary poetic theory - not suitable for tragedy, or an opera had to be a piece only consisting of recitatives. The pastorale did not raise such problems.1 In comparison with this, the names tragédie en musique and later tragédie lyrique show that the French opera wanted to be a tragedy. When composer Jean-Baptiste Lully and librettist Philippe Quinault developed it they had similar problems like the Italian opera. The spoken tragedy, called tragédie classique, by authors like Jean Racine and Pierre Corneille were juged to be perfect. To set a perfect text into music would have damaged it. That is why the tragédie lyrique became a „tragédie classique inversée”:2 it concentrated on elements which were forbidden in the spoken tragedy. While 1.

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_____________________________________________________________ the tragédy classique complies with the three Aritotelian units of time, scene, and action in an opera every act had its own stage decoration. Due to the unity of scene a spoken tragedy had to have its setting at a place where probably most of the characters happened to pass by - mostly at a hall. The opera had a free choice. While the tragédie classique as a rule used subjects from the antiquity the tragédie lyrique often dramatised stories from the middle ages. The opera not only offended against the three units but neglected the convention of the bienséance, too. This convention summarised elements a drama did not have to present: the daily life, the expression of certain emotions, all hints on sensual or sexual lust as well as duels and violent death.3 Dying scenes and battles played off stage and were just reported. Whereas it was strictly forbidden to show a murder on stage the suicide was considered suitable with the hero’s dignity.4 As a rule a suicide on stage ended the tragedy, because the bienséance considered it unreasonable to display a corps too long to the audience. If there were more than one suicide, only the last one acted on stage, the others off stage. For instance in Racine’s Andromache the title role kills herself backstage, while Orest dies on the scene.5 Compared to that, the tragédie lyrique was so barbarous that Cathérine Kintzler presumes that the French opera went back to the older form off the tragédie sanglante (“bloody tragedy”).6 The German librettist Barthold Feind complained about the cruelties of the French opera as follows: In the French operas the ending with the murder of one or more persons is vulgar, although I think that the Parisian auditorium is as delicate as every other in the world. But it is very nasty, if one hangs people on stage like Haman, or if one puts people in the oven and burns them, or if one turns them into bears or monsters and does not let them sing, but grumble and roar. In den französischen Opern ist ordinair der Beschluß die Ermordung einer oder mehr Personen, ungeachtet ich glaube, daß das Parisische Auditorium um so delicat, als eines von der Welt. Das steht aber garstig, wenn man die Leute auf dem Schauplatz hencket, wie den Haman: oder wenn man sie in den Back-Ofen steckt, und verbrennet: oder sie in Bären und Monstra verwandelt, und an statt des Singens brummen und brüllen lässet.7 While many German operas referred to these cruelties, Italian authors experimented at the same time with the possibility of dying scenes but stayed closer to the bienséance, as shown in a comparison of a German and

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_____________________________________________________________ an Italian libretto with the same story. In Bajazeth und Tamerlan by Postel und Förtsch (1690) Bajazeth dashes his head against the iron bars of his cage.8 In Agostino Piovene’s Il Tamerlano (1711), set to music by Francesco Gasparini, the poisoning of Bajazeth is just reported. A version by Ippolito Zanelli of 1719 under the title Bajazet, again with music by Gasparini, gives a detailed dying scene, probably according to the singer Francesco Borosini’s wish: Bajazet is not able to bare the humiliations of Tamerlano, takes poison and staggers with curses backstage. Borosini was also the actor of Bajazet in Handel’s setting of Il Tamerlano (1724). He induced the composer who set the libretto version of 1711 to change the ending according to the version of 1719.9 Likely, Feind intended similar moderate dying scenes when he defended their possibility: Several tender-hearted people believe it is cruel to see a person stabbed in the theatre, but despite this at the most barbarous executions all markets, alleys, and places of execution are crowded. And why is it cruel to see how someone stabs himself, while sitting on a chair and letting sink his head, like in Lucretia? Etlichen weichmüthigen kömmt es cruel vor, eine Person auf dem Theatro erstochen zu sehen, und dennoch sind bey den grausamsten Executionen alle Märckte, Gassen und Richt=Plätze voll. Und was ist doch wol grausames daran, wenn man siehet, wie eine Person sich ersticht, auf dem Stuhle in der Ferne sitzet, wie in der Lucretia und den Kopff sincken läßt?10 When Feind wrote his treatise about the opera he had finished some opera librettos, including not only Lucretia (1705), which he mentioned in the last quote, but also Masagniello Furioso (1707). The way to the dying scene is surprising: After a revolt against the Neapolitan nobility the fisher Masagniello gets the political power. But then he becomes mad and some „masqued persons” shoot him.11 The opera does not explain why Masagniello becomes mad nor why he gets killed. The dying scene is typical for this type of scene in both German spoken drama and opera of the seventeenth and early eighteenth century. It focuses on the way leading to the death but renounces to present the dying after the act of violence.12 The composer of this opera, Reinhard Keiser, stresses Masagniello’s madness via a “babbling” declamation of the text “You have got hearts like the women”:13

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Immediately before he gets shot he sings a very short aria in only 11 measures: I do not hurry by ship otherwise I have to drown and sink. The impetuosity drives me to and fro. Heaven, I descend to the abyss! Ich eile nicht mehr zu Schiffe, sonst muß ich ertrinken und sinken. Das Ungestüm treibet mich hin und her. O Himmel, ich fahre zur Tiefe!14 The following example gives the last phrase of this aria. The singer’s melodic line does not only interpret “I descend to the abyss” by a tumble of two octaves, but also anticipates his surprising death. Just two recitative-bars by Masagniello follow: „Is this my reward? O you traitors!” (Ist dies mein Lohn? O ihr Verräter!).

Like the French spoken tragedy French operas often ended with dying scenes. The obligatory closing ballet of operas without dying scene was therefore scheduled directly before the closing scene.15 In comparison with this the early German operas shied away from dying scenes at the end of an opera and the termination of underplots eased the horrors of the dying scene. The reconciliation of the survivors did not only finish the mentioned Bajazetoperas but also Masagniello furioso:

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_____________________________________________________________ Because some tender-hearted people, who plug their ears to avoid to hear the sound of the martial trumpets and who prefer their hair powder flying around their heads than the dust of a battle field, may think that the fury of the raging Masagniello with his unlucky but well-deserved death is too cruel, a double confused love-intrigue was interlaced. Weil nun die Wuth dieses tobenden Masaniello [sic!] mit dessen zwar unglückseeligem, jedoch wohl-verdientem Ende/ einigen zarten Gemüthern, die vor dem Klang der kriegerischen Tormpeten die Ohren stopffen, und lieber den Puder aus den Locken, als den Staub in Schlachten um das Gesicht fliegen haben, etwas zu cruel nach ihrer weichmühtigen Eingenschafft, vorkommen möchte, so hat man eine zweyfache verworrene Liebes-Intrigue in die Materie eingeflochten.16

Anton Klein and Ignaz Holzbauer: Günther von Schwarzburg The 1720s established a new type of Italian opera often referred to as “metastasian”, according to its most important librettist Pietro Metastasio, who continued the work of other authors who tried to reform the Italian opera according to the aesthetics of the tragedie classique. The numerous comic characters disappeared and the operas complied with the bienséance. Whereas Metastasio experimented in his early librettos Didone abbandonata and Catone in Utica with the final suicide of the title roles, the lieto fine (happy ending) made its way after his appointment at the imperial court in Vienna. The theory of the lieto fine includes three elements, not only the mentioned bienséance but also the poetical justice and the idea of the tragedy as theodizee. Aristotle claimed that the innocent must not be punished and the evil must not be rewarded. The Italian theorists inferred from this that the political justice demands that the good have to be rewarded in the end. According to Enrico Mattioda, this idea was established no later than the year of publication of Francesco Scipione Maffei’s tragedy Merope (1714).17 This theory harmonised with Leibnitz’s idea of the theodizee, who concluded from the three divine attributes of omniscience, infinite goodness, and omnipotence that God created no other world than the best of all possible worlds. The tragedy theory simplified this idea and maintained the reward of the good at the end of the tragedy to be a proof of the justice of the world.18 In the following years the lieto fine reigned the Italian opera until the 1760s when authors experimented again with tragic endings.19 2.

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_____________________________________________________________ In the meantime, Friedrich Gottlob Klopstock developed a new type of dying scenes. Whereas the German drama of the 17th century was primarily interested in the representation of violent death, Klopstock described in his reading drama Der Tod Adams (1757) (“Adam’s death”) the gradual decline of the title role’s vital energy.20 The oratorio adaption Adam by Pietro Chiari und Baldassare Galuppi influenced the development of the dying scene at first in the venetian oratorio and later the opera.21 Günther von Schwarzburg by Anton Klein and Ignaz Holzbauer describes the struggle for the German imperial throne in 1356 between the title role and the Bohemian king Karl. Günther represents the good prince, who sacrifices himself unselfishly to his fatherland. In comparison with him Karl is the puppet of his mother Asberta, who wants her son on the throne to reign by herself. After Günther’s imperial election Asberta orders to poison him, but her plan to gain the political power fails. Karl’s bride Anna makes him settle the matter with Günther. All protagonists assemble at Günther’s death bed who proclaims Karl and Anna to be his successors. After that, Asberta enters accompanied by soldiers and, although Günther is already poisoned, she also tries to stab him. Following the failure of this assault, she attacks her son and blames him to undermine her power. When Karl commands to arrest her, she becomes mad and commits suicide. Now Günther’s voluminous dying scene begins. Like in the rest of this opera, stage directions aiming at motion characterise not only the libretto but also the musical setting.22 A pounding motive of the strings in E flat major announces that Günther is beginning to speak (bars 14-15), chromatically changing notes express his pains (16-17). With trembling string figures in C minor. Günther approaches Rudolf and sinks in his arms (19-20).23

When the other roles utter their horror the strings keep silence. The following aria seems to be well-balanced:

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_____________________________________________________________ O sweet end of my plagues! O beautiful evening of my days! O friends do not wail! O Fatherland! With golden gaiety The blissful time shines above your head! O do not wail! O süsses Ende meiner Plage! O schöner Abend meiner Tage! O Freunde, trauret nicht! O Vaterland! Mit goldner Heiterkeit glänzt über deinem Haupt die Wonnezeit! Freunde trauret nicht!24 This aria has got a remarkable structure, which has both a regular and an irregular phrasing. The phrasing is irregular because as a rule musical themes in the late 18th century consist of 8 measures, like the theme of Mozart’s Sonata in A major (KV 331-I).

It is divided into two phrases of 4 measures, which are composed of two halves of 2 measures. In Günther’s last aria this principle is skipped. On the other hand the phrasing is regular because the phrasing does not consist of 2-bar-phrases, indeed, but of 3-bar-phrases. This structure allows the composer on the one hand to express Günther’s disease via the irregularity of the phrasing, and on the other hand the expression of his confidence via the regularity:25

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Only two passages deviate from this scheme. In both cases the melody declaims recitative-like and the harmony leaves the Eb major, the aria’s key. Let us take a look at the second passage. It is grouped in 4+2 measures (or to be more accurate in 3½+2½ measures), so the superordinated grouping into six measures is preserved. The declamation underlines the repeated “Fatherland” (Vaterland), which is the centre of Günther’s interests (bar 24). The trill on “with golden serenity” (Mit goldner Heiterkeit) (bar 25) and the melismas in the following measures (bars 26-29) suggest even a certain gaiety:

His last words in the following recitative are dedicated to his political testament: I’m dying! - Karl! Rule - free people! O Germany! How small you are - divided by discord! How great by unity of brothers! Karl! Rudolf! My brothers!

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_____________________________________________________________ More enervating than discord is inclination to foreign customs. Proud - to be German - is your greatness!26 Like in most dying scenes in operas Günther’s last words are written in broken verses that transpose the difficulty of breathing into a metric structure. In the first two lines he has problems to speak whole sentences, even the third line is set to music with rests. In the fourth line only the enumeration interrupts the music. The fifth line has got only one rest in the music. In the last line Günther returns to the broken verses. Günther begins his dying scene in Ab major (a key with four flats) and reaches Db major (five flats), when he admonishes Karl to be a good prince (bars 30-32). In a former aria of Günther this key accompanies his conviction „Prince, be the law’s subject” (Fürst sei des Gesetzes Untertan). The next measures modulate further to keys with more flats. The low marks in Eb minor (six flats) and Ab minor (seven flats) comment Günther’s concerns about Germany’s future (bars 32-36). When he addresses Karl and Rudolf, who should continue his political work, the harmony lightens via Bb minor (five flats) and F minor (four flats) to C minor (three flats) (bars 37-41). While Günther returns to the broken verses, the highest note of the recitative f1 stresses a last time the word „German” (deutsch) (bar 41). As a rule a recitative in the 18th century ends in a clause with a falling forth, but Günther does not have enough breath to end his phrase properly and the expected c1 is substituted to an ab (bar 42):

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In Masagniello furioso the conclusion of both love underplots soothe the foregoing dying scene. In Günther von Schwarzburg a love underplot contrasts the political plot, too. While in Masagniello both plots just have a simultaneous existence, in Günther they are connected by the same roles. Asberta does not only poison Günther, she also persuades Karl that he is only allowed to marry Anna if he becomes the emperor. These false information clear up at Günther’s dying bed. Again a little pleasing end of a political hero

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_____________________________________________________________ and a happy ending of a love affair intersect. Here, however, the extensive dying scene ends the opera and a few bars of the final chorus do not milder the ending at all. Although librettist Klein did not connect the plots as skilled as Mestastasio, it is notable that he connected that plots at all. Richard Wagner: Rienzi Since the 1820s the so-called grand opéra was established in France. Like Metastasio reigned the opera seria, Eugène Scribe wrote the librettos of most important operas of this genre. The tragic ending was no more an exception but according to Anselm Gerhard besides extended chorus scenes an essential characteristic.27 Already in Rossini’s first French opera Le Siège de Corinthe (1826) the connection of tragic ending and mass scene is given, when the opera closes with a massacre of the Greek inhabitants by the Turkish conqueror.28 Here, it is not necessary to discuss the question if Wagner’s Rienzi was more influenced by Giacomo Meyerbeer’s Les Hugenots (1836) or by Gaspare Spontini’s Ferdinand Cortez ou La Conquête du Mexico (1809, third version 1832). Regarding the main topic of this chapter another source is more interesting. In his “Erinnerungen an Auber” he wrote about DanielFrançois-Esprit Auber’s La muette de Portici (1828): 3.

Compared to this the ‘Deaf’ surprised immediately as something completely new: an opera subject of this liveliness was never presented before. The first genuine drama in five acts, perfectly endowed with all the attributes of a tragedy, and above all a tragic ending. Dagegen überraschte die ,Stumme’ sofort als etwas vollständig Neues: ein Opernsüjet von dieser Lebendigkeit war nie dagewesen; das erste wirkliche Drama in fünf Akten, ganz mit den Attributen eines Trauerspieles, und namentlich eben auch dem tragischen Ausgange, versehen.29 Wagner regarded La muette de Portici as release for the establishment of the tragic ending in the German opera in the 19th century. It is remarkable that Auber’s opera dramatised the same subject like Masagniello furioso. Wagner’s libretto after Edward Bulwer-Lytton’s novel Rienzi, the Last of the Tribunes again shows a politician of modest origin who gets the political power by a national uprising. Whereas Feind und Keiser in Masagniello just seem to be interested in staging a spectacular plot Wagner wanted to dramatise the political spirit of

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_____________________________________________________________ revolution of the 1830s and 40s in Germany. The introduction scene already shows the attempt of the two competing families of Rome to kidnap and to rape Rienzi’s sister Irene. When the pontifical legate tries to conciliate both families enter into a league with each other. While the people start an uproar Rienzi prevents a spontaneous rebellion. With this, Rienzi proves his leadership and he commands a revolution against the Roman nobility. He rejects the crown and becomes tribune. In the course of the opera the nobility regains the political power and when the church, which had supported Rienzi up to that moment, sides with the aristocracy, the people turns against him, too. Like in Masagniello and Günther, a love underplot contrasts the political plot. Günther connected both plots closer than Masagniello. Here, the love plot arises between Günther’s rival Karl and the daughter of Günther’s friend Rudolf. In comparison with this, Adriano, son of the head of one of the two main aristocratic families, falls in love with Rienzi’s sister Irene and gets impressed by the tribune’s charisma, which turns into enmity when Adriano’s father dies in a battle against Rienzi. Wagner connects both plots even in the dying scene. Rienzi is in the capitol when “crowds with torches flock together in furious excitement from all sides” (Volkshaufen in wütender Aufregung, mit Feuerbränden, strömen von allen Seiten herbei).30 The tribune is no longer able to soothe the people, which now sets fire to the building. While Masagniello’s masked killers enter the stage very shortly and Günther’s assassin Asberta is still death when he takes his last breath, Rienzi dies face to face to his enemies. Corresponding to this the emotional expressions are not calming like in Günther but get more excited. Nevertheless a resolute hero dies: Cursed and destroyed be this town! Rot and dry up, Rome! As your degenerate people wants!31

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When Rienzi speaks his last words the orchestra seems to stand still. Repeated octaves of the brass introduce Rienzi’s curses, which are accompanied by diminished seventh chords of the full orchestra, which end in an octave of the Violins. Rienzi’s last phrase sounds without the orchestra, so the following entry of the orchestra and chorus becomes more impressing. While Günther sings his last words in middle notes Rienzi remains on very high, chromatic ascending notes. Wagner wanted to show both the stoic dying of Rienzi and the cruelty of a death by fire. He solved these problems by connecting the dying scene with the love underplot. At first, Irene joins her brother on the balcony of the burning capitol. Her lover Adriano tries to rescue her. Instead of Rienzi he represents the horrors of the situation. He is not calm but very excited: Irene! Irene! Through the flames! (When Adriano enters the capitol the tower, where Rienzi

and Irene are, collapses accompanied by an awful sound. Adriano sinks to the ground with a cry and is buried by the debris together with Rienzi and Irene.) Irene! Irene! Auf durch die Flammen!

(Als Adriano dem Kapitol zueilt, stürzt der Turm, wo Rienzi und Irene sich befinden, mit furchtbarem Krach zusammen. Adriano sinkt mit einem Schrei leblos zu Boden und wird mit Rienzi und Irene unter den Trümmern begraben.)32

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Whereas the accompaniment of Rienzi’s last words remains static, ascending movements of the orchestra stress Adriano’s panic (bars 211-213, 213-215, 215-219). In opposition to this a descending line of the cellos and double basses shows the crash of the capitol and ends in a cry by Adriano (bars 218-219).

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Notes 1

Florian Mehltretter, Die unmögliche Tragödie. Karnevalisierung und Gattungsmischung im venezianischen Opernlibretto des 17. Jahrhunderts, (Frankfurt a.M.: Peter Lang 1994), 48 and 65-66. 2 Cathérine Kintzler, “La tragédie lyrique et le double défi d’un théâtre classique”, in La tragédie lyrique (Paris: Cicero editeur, 1991), 53. 3 Jacques Scherer, La dramaturgie classique en France (Paris: Librairie Nizet, 1981), 410. 4 Ibid., 418. 5 Ibid., 421. 6 Cathérine Kintzler, Poétique de l’Opéra français de Corneille de Rousseau (Paris: Minerve, 1991), 228-243. 7 Barthold Feind, “Gedancken von der Opera” in Deutsche Gedichte, (Stade: Brunner 1708; reprint ed. W. Gordon Marigold, Bern: Peter Lang 1989), 107. 8 Johann Philip Förtsch, Bajazeth und Tamerlan in einem Sing-Spiel vorgestellet (Hamburg, 1690). 9 Reinhard Strohm, Die italienische Oper im 18. Jahrhundert (Wilhelmshaven: Heinrichshoven’s Verlag 1979), 97-103. 10 Feind, “Gedancken”, 106-107. 11 Barthold Feind, “Masagniello Furioso. Oder: Die Neapolitanische FischerEmpörung. Musicalisches Schauspiel”, in Feind, Deutsche Gedichte, 251320. 12 Richard Sexau, Der Tod im Deutschen Drama des 17. und 18. Jahrhunderts (von Gryphius bis zum Sturm und Drang). Ein Beitrag zur Literaturgeschichte (Bern: Francke 1906, reprint Hildesheim: Gerstenberg 1976), 143. 13 Reinhard Keiser, Masaniello furioso, ed. Hans-Joachim Theil (Mainz: Schott, 1986), 276. 14 Ibid., 279-280. 15 Caroline Wood, Music and Drama in the Tragédie en Musique, 16731715. Jean-Baptiste Lully and his Successors (New York: Garland, 1996), 250. 16 Feind, “Masagniello furioso”, 255. 17 Enrico Mattioda, Teorie della tragedia nel settecento (Modena: Mucchi Editore, 1994), 199-200. 18 Ibid., 210-217. 19 Marita P. McClymonds, “La morte di Semiramide ossia La vendetta die Nino and the Restoration of Death and Tragedy to the Italian Operatic Stage in the 1780s and 90s”, in: Atti del XIV congresso della società Internazionale

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_____________________________________________________________ di Musicologica. Tramissione e recezione delle forme di cultura musicale, III, Free papers, ed. A. Pompolio (Turin: EDT, 1990), 285-292. 20 Sexau, 231. 21 Helen Geyer, „Die Sterbeszene im Oratorium des 18. Jahrhunderts”, in: Opernheld und Opernheldin, ed. Klaus Hortschansky, (Hamburg and Eisenach: Verlag der Musikalienhandlung Karl Dieter Wagner, 1991), 202207. 22 Helga Lühning, “Die Aufkündigung einer Gattungstradition. Das metastasianische Drama, Wielands Singspielkonzeption und die deutsche Oper Günther von Schwarzburg”, in Mannheim und Italien, ed. Roland Würtz (Mainz: Schott, 1984), 175-177. Michael Schwarte, “Musikalisierung von Zeit und Bewegungsabläufen in Ignaz Holzbauers Günther von Schwarzburg”, in Mozart und Mannheim. Kongreßbericht Mannheim 1991, ed. Ludwig Finscher (Frankfurt a.M.: Peter Lang, 1994), 101-117. 23 Ignaz Holzbauer, Günther von Schwarzburg, Günther von Schwarzburg. Ein Singspiel in drei Aufzügen, ed. Hermann Kretzschmar (Leipzig: Breitkopf, 1902), 301-302. Compare Schwarte, 103-106. 24 Ibid., 303-307. 25 Ibid., 303. 26 Ibid., 310. 27 Anselm Gerhard, Die Verstädterung der Oper. Paris und das Musiktheater des 19. Jahrhunderts (Stuttgart: Verlag J.B. Metzler, 1992), 8-9. 28 Ibid., 73-78. 29 Richard Wagner, „Erinnerungen an Auber”, in Richard Wagner, Gesammelte Schriften und Dichtungen. Neunter Band (Leipzig: Verlag von E.W. Fritzsch, 1873), 55. 30 Richard Wagner, Rienzi, der letzte der Tribunen: große Oper in 5 Akten, Teil 4: Vierter und Fünfter Akt, ed. Reinhard Strohm and Egon Voss (Mainz: Schott, 1977), 189. 31 Ibid., 192-194. 32 Ibid., 199-201

Bibliography Feind, Barthold. Deutsche Gedichte. Stade: Brunner, 1708 (reprint ed. W. Gordon Marigold, Bern: Peter Lang 1989). Förtsch, Johann Philip. Bajazeth und Tamerlan in einem Sing-Spiel vorgestellet. Hamburg, 1690. Gerhard, Anselm. Die Verstädterung der Oper. Paris und das Musiktheater

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_____________________________________________________________ Förtsch, Johann Philip. Bajazeth und Tamerlan in einem Sing-Spiel vorgestellet. Hamburg, 1690. Gerhard, Anselm. Die Verstädterung der Oper. Paris und das Musiktheater des 19. Jahrhunderts. Stuttgart: Verlag J.B. Metzler, 1992. Geyer, Helen. „Die Sterbeszene im Oratorium des 18. Jahrhunderts”. In: Opernheld und Opernheldin, ed. Klaus Hortschansky. 195-229. Hamburg and Eisenach: Verlag der Musikalienhandlung Karl Dieter Wagner, 1991. Holzbauer Ignaz. Günther von Schwarzburg. Ein Singspiel in drei Aufzügen, ed. Hermann Kretzschmar. Leipzig: Breitkopf, 1902. Keiser, Reinhard. Masaniello furioso, ed. Hans-Joachim Theil. Mainz: Schott, 1986. Kintzler, Cathérine. “La tragédie lyrique et le double défi d’un théâtre classique.” In La tragédie lyrique. 51-63. Paris: Cicero editeur, 1991. Kintzler, Cathérine. Poétique de l’Opéra français de Corneille de Rousseau. Paris: Minerve, 1991. Lühning, Helga. “Die Aufkündigung einer Gattungstradition. Das metastasianische Drama, Wielands Singspielkonzeption und die deutsche Oper Günther von Schwarzburg”. In Mannheim und Italien, ed. Roland Würtz. 162-199. Mainz: Schott, 1984. Mattioda, Enrico. Teorie della tragedia nel settecento. Modena: Mucchi Editore, 1994. McClymonds, Marita P. “La morte di Semiramide ossia La vendetta di Nino and the Restoration of Death and Tragedy to the Italian Operatic Stage in the 1780s and 90s”, in: Atti del XIV congresso della società Internazionale di Musicologica. Tramissione e recezione delle forme di cultura musicale, III, Free papers, ed. A. Pompolio. 285-292. Turin: EDT, 1990. Mehltretter, Florian. Die unmögliche Tragödie. Karnevalisierung und Gattungsmischung im venezianischen Opernlibretto des 17. Jahrhunderts. Frankfurt a.M.: Peter Lang, 1994. Scherer, Jacques. La dramaturgie classique en France. Paris: Librairie Nizet, 1981.

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_____________________________________________________________ Schwarte, Michael. “Musikalisierung von Zeit und Bewegungsabläufen in Ignaz Holzbauers Günther von Schwarzburg”. In Mozart und Mannheim. Kongreßbericht Mannheim 1991, ed. Ludwig Finscher. 101-117. Frankfurt a.M.: Peter Lang, 1994. Sexau, Richard. Der Tod im Deutschen Drama des 17. und 18. Jahrhunderts (von Gryphius bis zum Sturm und Drang). Ein Beitrag zur Literaturgeschichte. Bern: Francke, 1906 (reprint Hildesheim: Gerstenberg, 1976). Strohm, Reinhard. Die italienische Oper im 18. Jahrhundert. Wilhelmshaven: Heinrichshoven's Verlag, 1979. Wagner, Richard. Gesammelte Schriften und Dichtungen. Neunter Band. Leipzig: Verlag von E.W. Fritzsch, 1873. Wagner, Richard. Rienzi, der letzte der Tribunen: große Oper in 5 Akten, Teil 4: Vierter und Fünfter Akt, ed. Reinhard Strohm and Egon Voss. Mainz: Schott, 1977. Wood, Caroline. Music and Drama in the Tragédie en Musique, 1673-1715. Jean-Baptiste Lully and his Successors. New York: Garland, 1996.

Section 2 Euthanasia

Nurse Involvement in the Care for Patients Requesting Euthanasia Nele De Bal, Bernadette Dierckx de Casterlé, Chris Gastmans Abstract Empirical Ethics occupies an increasingly major place in the health care ethics field. Rather than applying ethical theories to concrete ethical conflicts, the attempt is made to elaborate the values and norms already present in clinical practice. In this research project, the empirical turn in Ethics is applied to the theme of nurse involvement in euthanasia. Because of their patient-centred orientation and expertise, nurses are frequently confronted with euthanasia requests. Since September 2002, euthanasia is legally regulated in Belgium and nurses can anticipate being confronted more often with one or more aspects of the euthanasia process (notifying request, decision-making process, life-terminating action, aftercare). Our Empirical Ethics study aims to clarify nurses’ real involvement in the care process for patients requesting euthanasia in Flemish hospitals. Founding on individual in-depth interviews with nurses from a variety of practice settings (aged care, palliative care, oncology, internal medicine) in one of the selected general hospitals, the study will implement a grounded theory approach to dataanalysis, in order to get a balanced picture of the way in which and the extent to which nurses are actually involved in euthanasia. These results will facilitate the development of ethical guidelines that serve for positively orienting nurse involvement in euthanasia. This positive trend will continue in the ethically responsible development of palliative care practice. Keywords: euthanasia, nurse involvement, Ethics, Belgium, Grounded Theory, qualitative research, palliative care, nursing ***** Medical end-of-life decisions are frequently made in all countries where they have been studied. Of all deaths, euthanasia accounts for 2.59-2.7% in the Netherlands, 1.7% in Australia, 0.3-1.2% in Flanders (Belgium), 0.27% in Switzerland, 0.06% in Denmark and 0.04% in Italy.1-4 Review of the literature, as well as anecdotal experiences, show that there is great involvement of nurses in the care process for terminal patients requesting euthanasia, whether euthanasia is legal or illegal in the country being studied. Nevertheless, there is little transparency in nursing practice, especially with regard to euthanasia: What happens after the confrontation with a request for euthanasia? Are nurses involved in consultation and decision-making on

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______________________________________________________________ euthanasia? What is the nurse’s specific role during the life-terminating action? There are some alarming publications stating that nurses administer lethal medication themselves, even in the absence of the prescribing physician5-10 and without doctor’s orders.11-15 These findings should be taken seriously. This research evidence contrasts sharply with the almost complete absence of nurses in the euthanasia debate worldwide. The Belgian Euthanasia Act came into force on 23 September 2002, making Belgium the second country - after the Netherlands - to decriminalize euthanasia under certain conditions. This Act permits physicians to perform euthanasia (i.e. to administer lethal drugs by someone other than the person concerned with the explicit intention of ending a patient’s life, at the latter’s explicit request) under strict due care conditions. Unfortunately, the Belgian legislation has little to say about nurse involvement in euthanasia, only stipulating that “if there is a nursing team that has regular contact with the patient, the physician has to consult the nursing team about patient’s euthanasia request” (section 3, §2, 4).16 Nurses have the right to refuse any participation in the performance of euthanasia (section 14).16 These brief references leave nurses with many questions regarding their specific role in euthanasia. Nurses, however, have a crucial role in caring for terminally ill patients in general and patients requesting euthanasia in particular. In the last stage of a terminally ill patient’s life, cure is no longer a possibility and the importance of pain and comfort management, as well as nursing care, increases. Nurses are frequently confronted with a patient’s request for euthanasia because of their patient-centred orientation and provision of 24hour continuity of care, as well as their experience in the care for dying patients and their relatives. A better understanding of how nursing expertise and competencies can be used most effectively in the context of interdisciplinary care requires an in-depth exploration of the experiences of nurses themselves. Greater awareness of and reflection on the specific roles and contribution of nurses in care for patients requesting euthanasia could promote optimal nursing care for these patients. By means of empirical clarification we aimed to clarify nurses’ involvement in the care for patients requesting euthanasia. This paper addresses the results of three interrelated parts of our research program: a literature review on nurse involvement in euthanasia, a pilot-study entitled “The views of palliative care nurses on (their involvement in) euthanasia17”, and a pilot-study entitled “The involvement of nurses in euthanasia18”. 1.

Literature Review on Nurse Involvement in Euthanasia Using the electronic databases Medline, CINAHL, BIOETHICSLINE and Invert, research articles published between 1970 and 2005 were systematically investigated. Manual searches for relevant references were conducted. In selecting the literature, four predetermined

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______________________________________________________________ criteria were applied: (1) articles or books that describe the results of (quantitative or qualitative) empirical research; (2) publications describing the involvement of nurses in euthanasia; (3) English, French, German or Dutch language publications; and (4) definition of euthanasia as the administration of lethal drugs by someone other than the person concerned with the explicit intention of shortening the patient’s life at the latter’s explicit request. The necessary criteria for euthanasia are: the patient has attained the age of majority or is an emancipated minor, and is legally competent and conscious when making the request; the request is voluntary, well-considered and repeated, and is not the result of any external pressure; and the patient is suffering from a terminal illness. At first sight, there appears to be a great deal of literature on the involvement of nurses in euthanasia, but after a thorough analysis of the content of these articles, the number of usable publications was drastically reduced. In a large number of publications it was unclear what was meant by ‘euthanasia’. When definitions were given, the definition used did not always comply with the definition of euthanasia used in this review. Moreover, many publications were limited to a description of nurses’ attitudes and ideas about euthanasia and their involvement in it. The search strategy yielded 37 usable publications, including three review articles19-21, that formed the basis for this literature review. In 21 publications5,11-15,22-36, the sample consisted of nurses. These studies were considered as primary articles in the literature review. The remaining 13 studies1,3,6-10,37-42, in which physicians or cases of death are the topic of investigation, provide indirect and supplemental information on the involvement of nurses in euthanasia. Twenty articles described the results of a quantitative empirical investigation. 3,6,7,9-14,22-25,30,31,37-40,42 Ten describe the results of a qualitative empirical study in which the attempt was made to understand what this involvement really implies.15,26-29,32-36 A mix of both a quantitative and qualitative research methodology was used in four studies.1,5,8,41 Empirical data are scarce, use diverse terminology, and have methodological difficulties, making reliable comparisons of research findings difficult. In spite of these limitations, the review of literature from Belgium, the Netherlands, the United States of America, Japan, Australia, and New Zealand does provide a number of valuable findings regarding nurse involvement in euthanasia. It offers an international perspective to validate the results from our two pilot studies that took place in anticipation of new Belgian legislation on euthanasia. 2.

First Pilot Study: “The views of palliative care nurses on their involvement in euthanasia”17 This pilot study was an in-depth exploration of palliative care nurses’ views and attitudes on their involvement in the care process

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______________________________________________________________ surrounding euthanasia. A qualitative Grounded Theory43 strategy was used for data collection and analysis. In anticipation of new Belgian legislation on euthanasia (December 2001 - April 2002), we conducted semi-structured interviews with 12 nurses working in diverse palliative care settings in the province of Vlaams-Brabant in Flanders (i.e. Dutch speaking parts of Belgium). Our sample included five palliative care unit nurses, four palliative home care team nurses, and three palliative support team nurses. All but one were female teams. Their mean age was 40.3 years (range from 29-53 years). Their nursing experience ranged from 2.5-30 years, 1.5-10 years of which were in a palliative care setting. Eight Roman Catholic nurses, two Liberal Humanists and two atheists ones participated. Second Pilot Study “The involvement of nurses in euthanasia”18 The second pilot-study was a qualitative study exploring in detail nurses’ experiences about their real involvement in caring for patients who request euthanasia, regardless of whether it was actually carried out or not. Its aim was trying to understand by means of nurses’ own experiences what it means for them to be actively involved in the care process for patients requesting for euthanasia. In-depth interviews with 15 nurses working in different care settings (e.g. intensive care, oncology, palliative care, and internal medicine) from 2 general hospitals and a palliative care setting in Flanders took place between November 2001 and September 2002. The sample included one intensive care nurse, one oncology nurse, eight palliative care nurses, and five internal medicine nurses. All but five were women. Their age ranged from 24-49 years. Grounded Theory43 was applied for guiding data collection and analysis. “The involvement of nurses in the euthanasia process” is defined as the function or the role fulfilled by the nurse during the process of care for a terminally ill patient with a euthanasia request. Nurse involvement is not limited to their assistance during the administration of the life-terminating drugs by the physician, but can refer to the nurse’s role in observing a euthanasia request, participating in the decision-making process on euthanasia, being present or assisting during the life-terminating action, as well as aftercare towards the patient’s relatives.33 Although summarized artificially as different stages, the phases of the care process are not strictly separable. We present it this way to illustrate the special role of nurses in each stage of this process, as described by the nurses themselves in our two pilot studies as well as in international research papers. 3.

4.

Observation of Euthanasia Request Pilot study 1 – The palliative care nurses we interviewed felt that they played an important and intensive role during this phase. As based on their experiences, they concluded that a nurse’s professional attitude could

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______________________________________________________________ dissuade the patient from pursuing euthanasia. This professional attitude to filter and to interpret entails nurses accepting the euthanasia request with ‘active openness’ towards the patient and his or her request. It means actively dealing with the request, thus taking the request seriously rather than passing it over as unimportant. It also requires that nurses take the time to listen carefully to patients with the aim of uncovering their reasons for requesting euthanasia. Identifying these reasons is critical to formulate an adequate response to deal with the specific issues of suffering that underlie the euthanasia request. According to palliative care nurses, improper euthanasia requests often originate from suffering that can be alleviated by alternative courses. Openness, reassurance, and giving information to take care of these questions and fears were mentioned. Palliative care nurses observed that, by offering their professional attitude, many improper requests were withdrawn and undignified deaths were avoided. Nevertheless, the nurses stated that active openness or adequate palliative care facilities and expertise did not always succeed in alleviating patients’ suffering.17 Pilot study 2 – Although most nurses in the second pilot study were not prepared for confronting a euthanasia request, some nurses sensed some sort of change in their patients, as if something was ‘brewing up’ in them. During this period, the nurses mainly tried to listen and to talk to the patients to get a better idea of the patients’ mindset. Nurses felt intense moral conflict when patients requested that they help them die, and viewed such a request as a serious plea, as a cry for help. It impelled them to change something to alleviate their patient’s dire situation. The interviewees stated unanimously that they had an important role in the overall care of these patients. Irrespective of their attitude towards euthanasia, once nurses became aware of their patients’ request to die, they made an effort to care for their patients in a compassionate way. If the nurse was the first caregiver to receive the euthanasia request, the nurse’s most important task was to listen carefully to the patient, taking the request seriously. The function of active listening was twofold: First, to be present and to give the patients the opportunity to tell their story and to express their feelings and concerns, and secondly, to determine or uncover the reason(s) behind the euthanasia request. Identifying these reasons is critical to formulate an adequate response to deal with the specific issues of suffering that underlie the euthanasia request. Nurses stated that many euthanasia requests were no real requests, but rather momentary or inconsistent requests prompted by a poor quality of life. All nurses indicated that certain tasks succeeded in alleviating the patients’ desires for euthanasia and resulted in comforting their patients. These included listening to their patients; informing them about palliative care principles, care alternatives and dying; reassuring them that they are there for them when needed; and maximizing pain and symptom control. The interviews showed that the nurses always informed the attending physician and their nursing colleagues

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______________________________________________________________ of the euthanasia request, mostly during rounds. Because nurses acted as a sounding board for and advocate of the patient, they considered it to be their task to filter the real euthanasia requests from false ones and to acquaint the physician.18 International perspective – The two pilot studies reported that Flemish nurses were the first health caregivers to receive patients’ requests for euthanasia. Review of literature confirms this observation. In 45% of cases, Dutch hospital and nursing home nurses were the first of whom patients requested euthanasia.5 It turns out that almost one in four American nurses working in a cancer unit have been confronted at some time with a patient’s request for euthanasia. Some nurses received up to 20 such requests for euthanasia (range 1-20).14,15 Of the 2333 oncology and non-oncology nurses in a different American study, 22% had at some point received a euthanasia request from a patient.12 Already in 1971, Brown and colleagues reported that almost one in four nurses from different care specialties in two hospitals in Washington had experience with requests for euthanasia. The highest percentage of nurses who had heard such requests were those on the surgical specialty services (35%).25 Studies of American critical care nurses gave a smaller number. Of the 1139 respondents, 13% have at some point been confronted with a patient’s request for euthanasia or assisted suicide. Most nurses reported receiving three or fewer requests.11,23 In a study carried out in the Australian state Victoria, 36% of nurses had at some time received such a request.13 Aranda & O’Conner (1995) replicated this study; in addition, the oncology and palliative care nurses participating were asked to supply additional descriptive information about their experiences with euthanasia. While the overall results of their study were similar to those of Kuhse and Singer13, of the 108 nurses who had received a request for euthanasia and had been asked to do so by taking direct and active steps, 2.7% had complied with this request compared with 5% in the original study.22 Another Australian study from the same period shows that 30% of general nurses in South Australia had at some point received a request for active termination of life.30 Using a modified, Japanese version of the Kuhse and Singer questionnaire, Asai and colleagues (2001) reported that half of the palliative care nurses had been asked for euthanasia by their patients.24,31 Volker (2001) used naturalistic descriptive analysis of 48 stories anonymously submitted by 40 nurses identified as direct providers or clinical nurse specialist members of the Oncology Nursing Society. Respondents submitted stories about the experience of being asked for euthanasia or assisted suicide. A number of nurses in this study relayed stories of refusing requests for assisted dying and countering that request by implementing palliative care measures or hospice referrals. Many stories reflected an experience of tension wanting to meet the patient’s request versus upholding professional values. Many nurses conveyed a sense of their own distress

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______________________________________________________________ manifested by anxiety, shock, and self-doubt.35 Nurses struggled to find the ‘right’ response, one that was morally and legally acceptable, but that also allowed them to honour their duty to care for their vulnerable patients and to respect their end-of-life choices.28,29 Nurses’ role in this phase was of being open to hear and hearing the request as well as filtering through and interpreting the requests. Nurses in Schwarz’ phenomenological studies (2003, 2004) described themselves as strong patient advocates. Participants heard a person’s plea for help from within the context of their own clinical experience, their personal and professional values, and their spiritual and religious beliefs. Requests were not taken at face value. Participants described active measures used to uncover and explore hidden meanings and unmet needs. A thorough assessment of the source of distress was initiated.28,29 Because of their specific expertise and daily involvement in care for terminally ill patients, nurses are the most appropriate people to determine whether they were interpreting the request correctly. Qualitative research from the Netherlands showed that half of the patients use the word ‘euthanasia’ to express their request, while the other half use vague terms, making interpretation not always easy.22 The theme of covert communication in the American oncology nurses’ stories confirms this finding.35 Studies from Australia13,22,30, Japan24,31, and the Netherlands5,32,33 show that nurses almost always inform colleagues, other health care professionals or family members about the patient’s request, often without asking for the permission of the patient. Remarkably, oncology nurses who acknowledged performing euthanasia (4.5%) in Matzo and Schwarz’ study (2001) apparently did not consult or turn to their nursing supervisor for support when confronted with a patient’s request for euthanasia. Their nursing supervisor was the last professional to whom they turned. This may leave nurses in a very lonely position when they are faced with such a moral dilemma.15 Most nurses in Schwarz’ studies did not consult or collaborate with professional colleagues; their responses to patients’ euthanasia requests occurred in isolation and were kept secret.28,29 5.

Participation in the Decision-Making on Euthanasia Pilot study 1 – Palliative care nurses stated that every persistent request for euthanasia must be accepted with active openness. The nurses we interviewed argued in favor of an interdisciplinary decision-making process requiring nurses’ input. The participation of nurses in this process was deemed crucial because of four factors: continuity, intensity and intimacy, term of address for relatives, and holistic training and education. A fundamental element of the patient-nurse relationship is continuity. Continuous, daily follow-up gives the nurse insight into the patient’s experiences and how these experiences may develop and contribute to the

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______________________________________________________________ patient’s request for euthanasia. The nurse occupies a unique position for gaining insight into any doubts or qualifications that may arise concerning the euthanasia request. Because the nurse’s information is not based on momentary impressions, euthanasia requests deemed impulsive can be largely excluded. As mentioned, nurses are uniquely positioned to gauge the validity of euthanasia requests. Nurses often know a lot about the patient because they are so close to them, both physically and psychologically. Their contact is characterised by intensity and intimacy. The close and often physical dealings with their patients foster a trusting environment in which in-depth discussions can safely take place. Through this intimacy, nurses can communicate the significance of the patients’ suffering as well as the information reported by family members to other caregivers. In addition, because of their holistic training and education, nurses can gain insight into the physical, psychological, social, and spiritual dimensions of the patients’ suffering. This ensures that the euthanasia decision-making is not based on a one-sided interpretation of the situation.17 Pilot study 2 – Nurses interviewed in the second pilot study reported that in units that had no customs for debating euthanasia requests, no explicit decisions were made nor were actions taken after the nurse reported the request. In units that did have this culture, the professionals involved discussed how the request would be handled. Although the physician and the nurse who received the request were always involved in the decision-making, other health care professionals might also be present. In the present study, we noted differences in the extent to which physicians consulted with nurses. Nurses suggested one possible explanation for this lack of communication: the nursing care context. Time pressure, setting (e.g. palliative care vs. regular care), physician specialty (e.g. oncology), and hierarchical doctornurse relationships were all frequently mentioned as contextual factors that determined whether nurses participated in decision-making on euthanasia or had some related influence. All 15 interviewees stated that the nurse’s role in this phase consisted of informing other team members of the request and supplying information about the patient’s needs and feelings. All nurses believed it was important to have a voice in the decision-making process, because they could contribute salient information about the patient and his or her request that could be obtained only as a result of their close and often physical dealings with patients. It was considered to be a major nursing task to communicate the significance of the patient’s suffering and to relate this adequately to every team member. Besides their clarifying role, some nurses from the palliative support team reported they organized a multidisciplinary discussion to determine which health care professionals should be involved in the next phase. Some nurses even prompted the physician to administer more drugs to alleviate the patient’s pain. After group discussion, physicians made the formal decision.18

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______________________________________________________________ International perspective – Review of the literature shows that participation by nurses in decision-making is usually limited to taking part in the deliberation; nurses seem to have very little say in the actual decisionmaking process. Examination of medical literature based on quantitative studies or data collected indirectly through physician reports reveals that in only about half the cases Belgian nurses participated in discussions dealing with euthanasia or assisted suicide.3,6 Dutch nurses participated in these discussions in only 30% of cases.1 Differences can be noted in the extent to which Dutch physicians consult with nurses. One possible explanation for this discrepancy put forward by Muller and colleagues (1997) is the worksetting. These authors report that Dutch clinical specialists and nursing home physicians (NHPs) did not consult with nurses at all in 5% of cases. On the other hand, Dutch general practitioners (GPs) have in 45% of cases no consultation with nurses. According to these doctors, the reasons for not consulting nurses were: respect for the patient’s wish, considering it not necessary to consult because everything was clear, the limited involvement of nurses, the wish to safeguard confidentiality and to keep it secret, and lack of time.8 Reasons reported by nurses in the recent nationwide Dutch study (2004) were comparable.5 The differences in the extent to which physicians consult nurses based on their specialty is illustrated by two other Dutch studies.1,41 The extent of consultation between physicians and nurses also varies according to the content of consultation.8,40,42 In 52% of cases, Dutch GPs consulted nurses about the patient’s request for euthanasia or assisted suicide. Consultations took place to a lesser extent about the physician’s intention to perform euthanasia or assisted suicide (40%) and the physician’s actual performance (36%).42 Muller and colleagues (1994) reported higher percentages: 94% were questioned about the request for euthanasia or assisted suicide and 93% about the nursing home physician’s intention to comply.40 A majority of the nurses in two Dutch studies did not necessarily need a formal say in the decision making. Nevertheless, they thought it important to have a voice in this process because of their everyday involvement in terminal care and their specific nursing expertise.5,33 Thé (1996) used participant observation and interview techniques to explore the nurse’s role in the care for dying patients with pulmonary diseases in a large academic hospital. Dutch nurses in her study experienced it as far more difficult when they were not involved in the euthanasia decision-making process, when they were kept out.32 More recently, van Bruchem-van de Scheur and colleagues (2004) described the directing, analysing, reporting, coordinating and advising role of nurses in the decision-making process. In 79% and 81% of euthanasia cases in the hospital and the nursing home, respectively, nurses and

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______________________________________________________________ physicians entered into consultation. In the home care setting, however, the percentage was somewhat lower (41%).5 The nurses in the study of Matzo and Schwarz (2001) indicated that they do not discuss the requests and their practices regarding assisted suicide and euthanasia with their nursing colleagues.15 To understand the initial processes which may take place when they received requests for euthanasia, South Australian nurses were asked if they would or did discuss what should be done with any other individuals. The majority said they would or did discuss the request with a medical practitioner (92%), nursing staff (95%) or relatives of patient (79%).30 6.

Presence or Assistance During Life-Termination Pilot study 1 – Concerning the actual act of performing euthanasia, palliative care nurses saw their role primarily as one of support. Most nurses we interviewed believed that administering the lethal medication is a medical act that is beyond their competence. Some of the reasons stated for why they were unwilling to personally perform euthanasia included an emotional resistance to killing, the irrevocable nature of the act, doubts they had about the right course of action, and concerns they had about the possible impact on one’s self-understanding. Some nurses, however, thought that they should be permitted to administer the lethal drugs, as long as a physician is present to guarantee that the administration proceed smoothly. Still, the nurses emphasized that performing euthanasia cannot be delegated to a nurse who did not take part in the decision-making process on euthanasia. Furthermore, the participants stressed that every nurse must always have an opportunity to decline participating in euthanasia on conscientious grounds. Just a few nurses consider themselves capable of administrating lethal drugs. There was ambivalence in nurses’ attitudes: Many nurses experienced a gap between the acceptability of euthanasia and carrying out euthanasia themselves. Nurses may feel that administrating drugs that cause death has a different connotation than simply being present when others perform the act. Most nurses consider themselves capable of being present during the event, even if they cannot reconcile themselves to euthanasia. At their patient’s request, some nurses were willing to set personal convictions aside in order to meet their patient’s needs in a professional manner, especially since they viewed dying as a significant event during which the patient cannot be left alone. Nevertheless, the nurses also felt that their presence during the administration of the life-terminating drugs is justified only when in compliance with the patient’s wishes.17 Pilot study 2 – Nurses in the second pilot study did not report a single request to die that ended in euthanasia. Our interviews indicated that the nurses attempted to enhance the terminally ill patient’s dignity and to maximize their comfort by medically controlling pain and symptoms. The

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______________________________________________________________ possibility of referring the patient to another hospital that performed euthanasia was mentioned in theory, but occurred only once. Palliative sedation was another often-mentioned solution to comfort the patient, but it was only performed if the patient persisted in his request in spite of pain and symptom control. Especially during this phase, nurses supported the psychosocial needs of their clients.18 International perspective – International research papers show that nurses experience their involvement in the phase of actual life-termination as being quite demanding. Emotions of anxiety, guilt, loneliness, confusion, and alienation are mentioned.34 All this is primarily because of the planned nature of the patient’s death, and the quick transition from life to death, which confront the nurses with a sense of unreality.32-34 Nurses’ involvement in this phase varies from personal presence to the actual administration of lethal drugs. In general, the nurse has a role that consists primarily in assisting the patient and the relatives. This means good patient oriented care not only in the days and hours leading up to, but also during the administration of the lethal medication.5,33,34 In hospitals and nursing homes, nurses were present in most of euthanasia performances (92.4% and 85% respectively).5 One surprising finding is that the Dutch GPs in the study of Muller and colleagues (1997) said that, in 7% of cases, homecare nurses were present at the patient’s bedside during the administration of the lethal medication; in 3% of cases, nurses were present in the patient’s house but not at the patient’s bedside, and in 90% of cases, nurses were not present at all.8 The respondents to the Australian replication study were a group of nurses commonly involved in the care of dying patients. Despite this high exposure, only 3% had ever been involved with euthanasia. Many had observed the complex and often transient nature of requests to die, indicating the danger of not exploring the situation in depth with the patient and family. 22 The research team from Japan reported that although half of the participating Japanese nurses had been asked for euthanasia, no nurse respondents had ever taken active steps to bring about the death of a patient. The majority of these palliative medicine nurses did reject the patient’s request due to the illegality of the action.24,31 Providing comfort care was identified by many respondents in Matzo & Schwarz’ study (2001) as their primary nursing concern: the main goal of comfort care was to ensure that pain was well controlled. Many nurses explicitly stated that their primary goal was not to end life but to relieve distress and provide comfort. Included within the descriptions of ‘comfort care’ were the following nursing interventions: Effective assessment and management of pain, relief of distress, allowing patients to die with dignity, advocating for patient choices, allaying fears and facilitating communication between patient and family, and helping the dying live as fully as possible until they die.15

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______________________________________________________________ In about half of euthanasia cases, nurses in the nationwide Dutch study had, besides their role of support for patient and relatives, a role regarding the preparation and administration of the life-terminating drugs. Some of the nurses’ preparatory activities are: Dissolving of the drugs, putting out things for the physician, and controlling the solution. The five most mentioned activities regarding the administration phase are: Passing the lethal drugs to the physician, controlling the physician performing lifeterminating action, inserting the drip with euthanatica, giving the physician detailed instructions about inserting the drip with euthanatica and changing the drip with euthanatica.5 Although the administration of the lethal medication is usually carried out by a physician, it is sometimes delegated to a nurse. Sometimes nurses administered lethal drugs in presence of a physician. In 15.4% of euthanasia cases, Dutch hospital nurses administered the life-terminating drugs, of which 3.5% in absence of the attending physician.5 Bilsen et al. (2004) reported that nurses aided physicians in administering lethal drugs in 17% of euthanasia deaths at home. For euthanasia in institutions, nurses administered lethal drugs themselves in more than half of the euthanasia cases studied: In 14% the physician was at the bedside while the nurse administered the drugs, and in 45% of euthanasia cases the nurse gave the drugs without the attendance of a physician.6 Groenewoud et al. (2000)9, Vander Stichele et al. (2004)10 as well as Muller et al. (1997)8 confirm these findings. In 38% of euthanasia cases in New Zealand, the nurse alone administered the lethal drugs. 7 Among the reasons for physicians delegating, reference is often made by nurses to their technical expertise with medical drip devices. Other reasons cited include habit; laziness; and the hierarchical doctor-nurse relationship.33 Although the percentages are low, it cannot be denied that sometimes nurses carry out euthanasia without a physician having prescribed it: 5%13; 4.5%14,15; 2%.12 Asch (1996) reported that 16% of American critical care nurses participated in euthanasia or assisted suicide at least once in their career, and not all reported instances were in response to requests or performed with the knowledge of the physician (8%). Reasons cited by the nurses performing euthanasia without a physician’s authorisation include a profound sense of responsibility for the patient’s welfare, concern about therapeutic obstinacy, a desire to relieve the patient of his or her pain and suffering, and a desire to overcome the perceived unresponsiveness of physicians toward that suffering.11 7.

Aftercare Pilot study 1 – The palliative care nurses we interviewed believed that they have an important role in supporting the patient’s family once their loved one has passed away. Euthanasia can give rise to questions, doubts, and

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______________________________________________________________ feelings of guilt in family members, possibly resulting in a problematic mourning process. Relatives might need reassurance about making the right decision. The nurses also indicated that family members might need someone who would listen to their thoughts and feelings. Having good communication with the patient’s relatives also served as a great relief for our participating nurses. All interviewees were convinced that euthanasia can have a major impact on the health care professionals involved in the end-of-life process. The ethical aspects of the event can give rise to deep, complicated feelings, questions, and doubts. Thorough emotional support for health care practitioners was deemed indispensable. It was essential for nurses to have a subsequent discussion with other team members. During this discussion, they felt attention had to be paid to the carers’ feelings and experiences, to the aspects of the event that went well, and how to improve the quality of patient care. Feeling supported and inspired by colleagues was of fundamental importance for coming to terms with their own experiences.17 Pilot study 2 – Although the interviewed nurses in the second pilot study reported no cases of euthanasia actually being carried out, they foresaw that their role of supporting the patient’s family would continue beyond the patient’s death. Nurses would talk to the relatives to help them grieve. Although not always having the opportunity, nurses found it important to be able to express their feelings to their colleagues, as it relieved their tension and allowed them to go on with their job and life. Being members of a close team, nurses received much emotional and technical support from their colleagues. The feeling of not being on one’s own was reported as an advantage of teamwork. Moreover, nurses prevented each other from getting too involved.18 International perspective – International data relating to aftercare are scarce. Aftercare relates to the nurses’ supportive role towards the family.5,32,33 In 30.5% of euthanasia cases in hospitals, aftercare was given by nurses in several ways, such as having a personal conversation with relatives or organizing a service of remembrance.5 Nurses lay out the deceased patient and consider this task as an important activity to their inner acceptance. Nurses try to manipulate the patient’s face into a correct expression so that relatives as well as nurses themselves have a vivid recollection of the patient at peace. Being alone with the deceased is considered the ideal moment of saying goodbye. After taking leave of the family, nurses sometimes accompany the patient’s dead body to the mortuary. To come to terms with their feelings, nurses talked things over with a nursing colleague and the performing physician or with a supervisor.34 8.

New Research Project Although the results of the two pilot studies are limited to the situation in Belgium prior to euthanasia legalization and our literature survey

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______________________________________________________________ reviewed international research publications, dating from the period that euthanasia was still illegal in all countries studied, they documented that there is a major and personal involvement of nurses in the care process for patients requesting euthanasia. This process begins as soon as the patient formulates a euthanasia request and comes to an end after having counselled the family. At every stage of this care process, nurses can make a significant contribution to the quality of care being provided by assisting and counselling the patient and his or her family in a professional manner. The willingness of nurses to personally and fully care for patients that request euthanasia, in addition to the specific terminal care expertise these nurses possess, allow them to be skilled companions44 of their patients. At a practical level professional nursing organisations rarely offer clear guidance to clinical nurses not only about the legal position of the nurse but also in many areas of skill development. The call of nurses, participating in our pilot studies as well as in the various international studies, for greater clarity on role assignment is timely and critical. However professional guidance needs to move beyond role clarity to include skill development in exploring expressed desire for euthanasia with a patient and team building skills that empower the nurse to discuss the management of patients requesting euthanasia within the health care team. The ongoing euthanasia debate which has already resulted in euthanasia legislation in the Netherlands and Belgium, lead us to believe that nurses can anticipate being confronted more often, and more urgently, with one or more aspects of the euthanasia process. As the group of professionals who provide the most sustained and intimate care at the end of life, nurses must be prepared to respond to such requests in a compassionate and helpful way that is respectful of both the patient’s and their personal values. Thus, continued study of nurse, patient and family member experiences is warranted. Our new research project aims to clarify the actual involvement of nurses in one or more aspects of the euthanasia process in general hospitals in Flanders (Belgium) and to confront the data thus obtained with the views that have been developed in nursing Ethics on the subject of euthanasia. A combined Empirical Ethics and a Philosophical Ethics methodology will be used. The Empirical Ethics study will focus on the real involvement of nurses in euthanasia in general hospitals in Flanders. A qualitative Grounded Theory43 approach will guide the data collection and analysis as it enables to develop and refine theoretical relevant concepts leading to a better understanding of nurse involvement. Individual in-depth, semi-structured interviews with hospital nurses from a variety of practice settings (aged care, palliative care, oncology, internal medicine) in one of the selected general hospitals in Flanders will be held to get a balanced picture of the way in which and the extent to which nurses are actually involved in euthanasia. The personal experiences of nurses in the euthanasia process will be the departure

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______________________________________________________________ point for this qualitative study. The study will clarify nurses’ professional roles and their specific contribution in one or more aspects of the care process for a patient with a euthanasia request. The philosophical Ethics study reviewed the various opinions in Nursing Ethics literature on euthanasia.45 In a second phase we studied the relationship between nurses and euthanasia by means of a historical, philosophical Ethics analysis. Using Margaret Urban Walker’s method of moral inquiry46,47, we analysed nurse involvement in eugenics in England at the turn of the twentieth century48 as well as nurse involvement during the euthanasia programs in Nazi Germany.49 The content and the functioning of ethical guidelines about care for people who request euthanasia will be examined. Both study components can in no way be considered in isolation from each other; normative Ethics is informed by the descriptive approach while the empirical data are assessed by normative Ethics. This dialogue will facilitate the development of clear, ethical guidelines that serve for positively orienting nurse involvement in euthanasia. Written, interdisciplinary formulated guidelines can help to build consensus and avoid disagreement among caregivers at each step of the process at the end of life. They may be helpful as a practical guide in work, will serve as a cornerstone for the foundation of quality end-of-life care and will support the ethically responsible development of palliative care practice.50

Notes 1

van der Wal Gerrit, van der Heide Agnes, Onwuteaka-Philipsen Bregje, van der Maas Paul. Medische besluitvorming aan het einde van het leven. De praktijk en de toetsingsprocedure euthanasie. [Medical decisions at the end of life. The practice and the assessment procedure of euthanasia]. Utrecht: De Tijdstroom, 2003. 2 Kuhse Helga, Singer Peter, Baume Peter, Clark Malcolm, Rickard Maurice. “End-of-life decisions in Australian medical practice.” Medical Journal of Australia 166 (1997): 191-196. 3 Deliens Luc, Mortier Freddy, Bilsen Johan, Cosyns Marc, Vander Stichele Robert, Vanoverloop Johan, Ingels Koen. “End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey.” The Lancet 356 (2000): 1806-1811. 4 van der Heide Agnes, Deliens Luc, Faisst Karin, Nilstun Tore, Norup Michael, Paci Eugenio, van der Wal Gerrit, van der Maas Paul. “End-of-life

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______________________________________________________________ decision-making in six European countries: descriptive study. The Lancet. Published online June 17, 2003. . 5 van Bruchem-van de Scheur Ada, van der Arend Arie, Spreeuwenberg Cor, van Wijmen Frans, ter Meulen Ruud. De rol van verpleegkundigen bij medische beslissingen rond het levenseinde. Verslag van een landelijk onderzoek naar betrokkenheid en praktijken [Role of nurses in medical endof-life decisions. Report on a nationwide study of involvement and practices]. Utrecht: De Tijdstroom, 2004. 6 Bilsen Johan, Vander Stichele Robert, Mortier Freddy, Deliens Luc. “Involvement of nurses in physician-assisted dying.” Journal of Advanced Nursing 47(6) (2004): 583-591. 7 Mitchell Kay & Owens R Glynn. “National survey of medical decisions at end of life made by New Zealand general practitioners.” British Medical Journal 327 (2003): 202-203. 8 Muller Martien, Pijnenborg Loes, Onwuteaka-Philipsen Bregje, van der Wal Gerrit, van Eijk Jacques. “The role of the nurse in active euthanasia and physician-assisted suicide.” Journal of Advanced Nursing 26 (1997): 424430. 9 Groenewoud Johanna, van der Heide Agnes, Onwuteaka-Philipsen Bregje, Willems Dick, van der Maas Paul, van der Wal Gerrit. “Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands.” The New England Journal of Medicine 342(8) (2000): 551556. 10 Vander Stichele Robert, Bilsen Johan, Bernheim Jan, Mortier Freddy, Deliens Luc. “Drugs used for euthanasia in Flanders, Belgium.” Pharmacoepidemiology and Drug Safety 13 (2004): 89-95. 11 Asch David. “The role of critical care nurses in euthanasia and assisted suicide.” The New England Journal of Medicine 334 (1996): 1374-1379. 12 Ferrell Betty, Virani Rose, Grant Marcia, Coyne Patrick, Uman Gwen. “Beyond the Supreme Court decision: Nursing perspectives on end-of-life care.” Oncology Nursing Forum 27(3) (2000): 445-455. 13 Kuhse Helga & Singer Peter. “Voluntary euthanasia and the nurse: an Australian survey.” International Journal of Nursing Studies 30(4) (1993): 311-322. 14 Matzo Marianne & Emanual Ezekiel. “Oncology nurses’ practices of assisted suicide and patient-requested euthanasia.” Oncology Nursing Forum 24(10) (1997): 1725-1732. 15 Matzo Marianne & Schwarz Judith. “In their own words: Oncology nurses respond to patient requests for assisted suicide and euthanasia.” Applied Nursing Research 14(2) (2001): 64-71.

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Ministry of Justice. Wet betreffende de euthanasie [The Belgian Act on Euthanasia of 28 May 2002]. Belgian Law Gazette of June 22, 2002. (28 October 2002) 17 Dierckx de Casterlé Bernadette, Verpoort Charlotte, De Bal Nele, Gastmans Chris. “Nurses’ views on their involvement in euthanasia: a qualitative study in Flanders (Belgium).” Submitted in Journal of Medical Ethics. 18 De Bal Nele, Dierckx de Casterlé Bernadette, De Beer Tina, Gastmans Chris. “Involvement of nurses in caring for patients requesting euthanasia: a qualitative study in Flanders (Belgium)”. Submitted in International Journal of Nursing Studies. 19 De Beer Tina, Gastmans Chris, Dierckx de Casterlé Bernadette. “Involvement of nurses in euthanasia: a review of literature.” Journal of Medical Ethics 30 (2004): 494-498. 20 Emanuel Ezekiel. “Euthanasia and physician-assisted suicide. A review of the empirical data from the United States.” Archives of Internal Medicine 162 (2002): 142-152. 21 van der Arend Arie. “Euthanasia and assisted suicide in the Netherlands: Clarifying the practice and the nurse’s role.” International Nursing Review 45(5) (1998): 145-151. 22 Aranda Sanchia & O’Conner Margaret. “Euthanasia, nursing and care of dying: Rethinking Kuhse and Singer.” Australian Nursing Journal 3(2) (1995): 18-21. 23 Asch David & DeKay Michael. “Euthanasia among US critical care nurses. Practices, attitudes, and social and professional correlates.” Medical Care 35(9) (1997): 890-900. 24 Asai Atsushi, Ohnishi Motoki, Nagata Shizuko, Tanida Noritoshi, Yamazaki Yasuji. “Doctors’ and nurses’ attitudes towards and experiences of voluntary euthanasia: survey of members of the Japanese Association of Palliative Medicine.” Journal of Medical Ethics 27 (2001): 324-330. 25 Brown Norman, Thompson Donovan, Bulger Roger, Laws E Harold. “How do nurses feel about euthanasia and abortion?” American Journal of Nursing 71(7) (1971): 1413-1416. 26 Magnusson Roger & Ballis Peter. “The response of health care workers to AIDS patients’ requests for euthanasia.” Journal of Sociology (Melbourne, Vic.) 35(3) (1999): 312-330. 27 Magnusson Roger. Angels of death: Exploring the euthanasia underground. Melbourne: University Press, 2002. 28 Schwarz Judith. “Understanding and responding to patients’ requests for assistance in dying.” Journal of Nursing Scholarship 35(4) (2003): 377-384. 29 Schwarz Judith. “Responding to persistent requests for assistance in dying: a phenomenological inquiry.” International Journal of Palliative Nursing 10(5) (2004): 225-235.

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______________________________________________________________ 30

Stevens Christine & Hassan Riaz. “Nurses and the management of death, dying and euthanasia.” Medicine and Law 13(5-6) (1994): 541-554. 31 Tanida Noritoshi, Asai Atsushi, Ohnishi Motoki, Nagata Shizuko, Fukui Tsuguya, Yamazaki Yasuji, Kuhse Helga. “Voluntary active euthanasia and the nurse: A comparison of Japanese and Australian nurses.” Nursing Ethics 9(3) (2002): 313-322. 32 Thé Anne-Mei. Vanavond om 8 uur… Verpleegkundige dilemma’s bij euthanasie and andere beslissingen rond het levenseinde. [Tonight at 8 o’clock... Nursing dilemmas in euthanasia and other decisions at the end of life]. Houten: Bohn Stafleu Van Loghum, 1997. 33 van de Scheur Ada & van der Arend Arie. “The role of nurses in euthanasia: a Dutch study.” Nursing Ethics 5 (1998): 497-508. 34 Van der Brug Ype, de Lange Jacomine, Philipsen Hans. Ervaringen van verpleegkundigen met euthanasie bij aids-patiënten. [Experiences of nurses with euthanasia in patients with aids]. Verpleegkunde 11(3) (1996): 143-155. 35 Volker Deborah. “Oncology nurses’ experiences with requests for assisted dying from terminally ill patients with cancer.” Oncology Nursing Forum 28(1) (2001): 39-49. 36 Volker Deborah. “Assisted dying and end-of-life symptom management.” Cancer Nursing 26(5) (2003): 392-399. 37 Baume Peter & O’Malley Emma. “Euthanasia: attitudes and practices of medical practitioners.” Medical Journal of Australia 161(2) (1994): 137,140,142-144. 38 Mortier Freddy, Deliens Luc, Bilsen Johan, Cosyns Marc, Ingels Koen, Vander Stichele Robert. “End-of-life decisions of physicians in the city of Hasselt (Flanders, Belgium).” Bioethics 14(3) (2000): 254-267. 39 Meier Diane, Emmons Carol-Ann, Wallenstein Sylvain, Quill Timothy, Morrison R Sean, Cassel Christine. “A national survey of physician-assisted suicide and euthanasia in the United States.” The New England Journal of Medicine 338(17) (1998): 1193-1201. 40 Muller Martien, van der Wal Gerrit, van Eijk Jacques, Ribbe Miel. “Voluntary active euthanasia and physician-assisted suicide in Dutch nursing homes: are the requirements for prudent practice properly met?” Journal of the American Geriatrics Society 42(6) (1994): 624-629. 41 van der Maas Paul, van der Wal Gerrit, Haverkate Ilinka, de Graaff Carmen, Kester John, Onwuteaka-Philipsen Bregje, van der Heide Agnes, Bosma Jacqueline, Willems Dick. “Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995.” The New England Journal of Medicine 335(22) (1996): 16991705.

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van der Wal Gerrit. “Euthanasie en hulp bij zelfdoding door huisartsen [Euthanasia and physician-assisted suicide by general practitioners].” Medisch Contact 46 (1991): 171-173;174-176;211-215;237-241. 43 Strauss Anselm & Corbin Juliet. Basics of qualitative research. Grounded Theory procedures and techniques. Newbury Park: Sage Publications, 1990. 44 Titchen Angie. Professional craft knowledge in patient-centred nursing and the facilitation of its development [Doctoral dissertation]. United Kingdom: Oxford University, 2000. 45 Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “The complexity of nurses’ attitudes towards euthanasia: A review of the literature.” Accepted for publication in Journal of Medical Ethics. 46 Walker Margaret. Moral understandings. A feminist study in ethics. New York/London: Routledge, 1998. 47 Walker Margaret. Moral contexts. New York/Oxford: Rowman & Litllefield Publishers, 2003. 48 Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “Nursing, obedience and complicity with eugenics: a contextual interpretation of nursing morality at the turn of the twentieth century.” Submitted in Journal of Medical Ethics. 49 Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “Practices of responsibility and nurses during the euthanasia programs of Nazi Germany. Relevance for nursing today.” Submitted in International Journal of Nursing Studies. 50 We thank Tina De Beer, Charlotte Verpoort and Maria Berghs for their valuable participation at the different phases of the research project.

Bibliography Aranda Sanchia, O’Conner Margaret. “Euthanasia, nursing and care of dying: Rethinking Kuhse and Singer.” Australian Nursing Journal 3(2) (1995): 1821. Asai Atsushi, Ohnishi Motoki, Nagata Shizuko, Tanida Noritoshi, Yamazaki Yasuji. “Doctors’ and nurses’ attitudes towards and experiences of voluntary euthanasia: survey of members of the Japanese Association of Palliative Medicine.” Journal of Medical Ethics 27 (2001): 324-330. Asch David. “The role of critical care nurses in euthanasia and assisted suicide.” The New England Journal of Medicine 334 (1996): 1374-1379.

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______________________________________________________________ Asch David, DeKay Michael. “Euthanasia among US critical care nurses. Practices, attitudes, and social and professional correlates.” Medical Care 35(9) (1997): 890-900. Baume Peter, O’Malley Emma. “Euthanasia: attitudes and practices of medical practitioners.” Medical Journal of Australia 161(2) (1994): 137,140,142-144. Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “The complexity of nurses’ attitudes towards euthanasia: A review of the literature.” Journal of Medical Ethics 31 (2005): 441-446. Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “Nursing, obedience and complicity with eugenics: a contextual interpretation of nursing morality at the turn of the twentieth century.” Journal of Medical Ethics 32 (2006): 117-122. Berghs Maria, Dierckx de Casterlé Bernadette, Gastmans Chris. “Practices of responsibility and nurses during the euthanasia programs of Nazi Germany. Relevance for nursing today.” International Journal of Nursing Studies 44(5) (2007): 845-854. Bilsen Johan, Vander Stichele Robert, Mortier Freddy, Deliens Luc. “Involvement of nurses in physician-assisted dying.” Journal of Advanced Nursing 47(6) (2004): 583-591. Brown Norman, Thompson Donovan, Bulger Roger, Laws E Harold. “How do nurses feel about euthanasia and abortion?” American Journal of Nursing 71(7) (1971): 1413-1416. Deliens Luc, Mortier Freddy, Bilsen Johan, Cosyns Marc, Vander Stichele Robert, Vanoverloop Johan, Ingels Koen. “End-of-life decisions in medical practice in Flanders, Belgium: a nationwide survey.” The Lancet 356 (2000): 1806-1811. Dierckx de Casterlé Bernadette, Verpoort Charlotte, De Bal Nele, Gastmans Chris. “Nurses’ views on their involvement in euthanasia: a qualitative study in Flanders (Belgium).” Journal of Medical Ethics 32 (2006): 187-192. De Bal Nele, Dierckx de Casterlé Bernadette, De Beer Tina, Gastmans Chris. “Involvement of nurses in caring for patients requesting euthanasia: a qualitative study in Flanders (Belgium)”. International Journal of Nursing Studies 43(5) (2006): 589-599.

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______________________________________________________________ De Beer Tina, Gastmans Chris, Dierckx de Casterlé Bernadette. “Involvement of nurses in euthanasia: a review of literature.” Journal of Medical Ethics 30 (2004): 494-498 Emanuel Ezekiel. “Euthanasia and physician-assisted suicide. A review of the empirical data from the United States.” Archives of Internal Medicine 162 (2002): 142-152. Ferrell Betty, Virani Rose, Grant Marcia, Coyne Patrick, Uman Gwen. “Beyond the Supreme Court decision: Nursing perspectives on end-of-life care.” Oncology Nursing Forum 27(3) (2000): 445-455. Groenewoud Johanna, van der Heide Agnes, Onwuteaka-Philipsen Bregje, Willems Dick, van der Maas Paul, van der Wal Gerrit. “Clinical problems with the performance of euthanasia and physician-assisted suicide in the Netherlands.” The New England Journal of Medicine 342(8) (2000): 551556. Kuhse Helga & Singer Peter. “Voluntary euthanasia and the nurse: an Australian survey.” International Journal of Nursing Studies 30(4) (1993): 311-322. Kuhse Helga, Singer Peter, Baume Peter, Clark Malcolm, Rickard Maurice. “End-of-life decisions in Australian medical practice.” Medical Journal of Australia 166 (1997): 191-196 Magnusson Roger & Ballis Peter. “The response of health care workers to AIDS patients’ requests for euthanasia.” Journal of Sociology (Melbourne, Vic.) 35(3) (1999): 312-330. Magnusson Roger. Angels of death: Exploring the euthanasia underground. Melbourne: University Press, 2002. Matzo Marianne & Emanual Ezekiel. “Oncology nurses’ practices of assisted suicide and patient-requested euthanasia.” Oncology Nursing Forum 24(10) (1997): 1725-1732. Matzo Marianne & Schwarz Judith. “In their own words: Oncology nurses respond to patient requests for assisted suicide and euthanasia.” Applied Nursing Research 14(2) (2001): 64-71. Meier Diane, Emmons Carol-Ann, Wallenstein Sylvain, Quill Timothy, Morrison R Sean, Cassel Christine. “A national survey of physician-assisted

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______________________________________________________________ suicide and euthanasia in the United States.” The New England Journal of Medicine 338(17) (1998): 1193-1201. Ministry of Justice. Wet betreffende de euthanasie [The Belgian Act on Euthanasia of 28 May 2002]. Belgian Law Gazette of June 22, 2002. (28 October 2002) Mitchell Kay & Owens R Glynn. “National survey of medical decisions at end of life made by New Zealand general practitioners.” British Medical Journal 327 (2003): 202-203. Mortier Freddy, Deliens Luc, Bilsen Johan, Cosyns Marc, Ingels Koen, Vander Stichele Robert. “End-of-life decisions of physicians in the city of Hasselt (Flanders, Belgium).” Bioethics 14(3) (2000): 254-267. Muller Martien, van der Wal Gerrit, van Eijk Jacques, Ribbe Miel. “Voluntary active euthanasia and physician-assisted suicide in Dutch nursing homes: are the requirements for prudent practice properly met?” Journal of the American Geriatrics Society 42(6) (1994): 624-629. Muller Martien, Pijnenborg Loes, Onwuteaka-Philipsen Bregje, van der Wal Gerrit, van Eijk Jacques. “The role of the nurse in active euthanasia and physician-assisted suicide.” Journal of Advanced Nursing 26 (1997): 424430. Schwarz Judith. “Understanding and responding to patients’ requests for assistance in dying.” Journal of Nursing Scholarship 35(4) (2003): 377-384. Schwarz Judith. “Responding to persistent requests for assistance in dying: a phenomenological inquiry.” International Journal of Palliative Nursing 10(5) (2004): 225-235. Stevens Christine & Hassan Riaz. “Nurses and the management of death, dying and euthanasia.” Medicine and Law 13(5-6) (1994): 541-554. Strauss Anselm & Corbin Juliet. Basics of qualitative research. Grounded Theory procedures and techniques. Newbury Park: Sage Publications, 1990. Tanida Noritoshi, Asai Atsushi, Ohnishi Motoki, Nagata Shizuko, Fukui Tsuguya, Yamazaki Yasuji, Kuhse Helga. “Voluntary active euthanasia and the nurse: A comparison of Japanese and Australian nurses.” Nursing Ethics 9(3) (2002): 313-322.

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______________________________________________________________ Thé Anne-Mei. Vanavond om 8 uur… Verpleegkundige dilemma’s bij euthanasie and andere beslissingen rond het levenseinde. [Tonight at 8 o’clock... Nursing dilemmas in euthanasia and other decisions at the end of life]. Houten: Bohn Stafleu Van Loghum, 1997. Titchen Angie. Professional craft knowledge in patient-centred nursing and the facilitation of its development [Doctoral dissertation]. United Kingdom: Oxford University, 2000. van Bruchem-van de Scheur Ada, van der Arend Arie, Spreeuwenberg Cor, van Wijmen Frans, ter Meulen Ruud. De rol van verpleegkundigen bij medische beslissingen rond het levenseinde. Verslag van een landelijk onderzoek naar betrokkenheid en praktijken [Role of nurses in medical endof-life decisions. Report on a nationwide study of involvement and practices]. Utrecht: De Tijdstroom, 2004. van de Scheur Ada, van der Arend Arie. “The role of nurses in euthanasia: a Dutch study.” Nursing Ethics 5 (1998): 497-508. van der Arend Arie. “Euthanasia and assisted suicide in the Netherlands: Clarifying the practice and the nurse’s role.” International Nursing Review 45(5) (1998): 145-151. Van der Brug Ype, de Lange Jacomine, Philipsen Hans. Ervaringen van verpleegkundigen met euthanasie bij aids-patiënten. [Experiences of nurses with euthanasia in patients with aids]. Verpleegkunde 11(3) (1996): 143-155. van der Heide Agnes, Deliens Luc, Faisst Karin, Nilstun Tore, Norup Michael, Paci Eugenio, van der Wal Gerrit, van der Maas Paul. “End-of-life decision-making in six European countries: descriptive study. The Lancet. Published online June 17, 2003. . van der Maas Paul, van der Wal Gerrit, Haverkate Ilinka, de Graaff Carmen, Kester John, Onwuteaka-Philipsen Bregje, van der Heide Agnes, Bosma Jacqueline, Willems Dick. “Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995.” The New England Journal of Medicine 335(22) (1996): 1699-1705. van der Wal Gerrit. “Euthanasie en hulp bij zelfdoding door huisartsen [Euthanasia and physician-assisted suicide by general practitioners].” Medisch Contact 46 (1991): 171-173;174-176;211-215;237-241.

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______________________________________________________________ van der Wal Gerrit, van der Heide Agnes, Onwuteaka-Philipsen Bregje, van der Maas Paul. Medische besluitvorming aan het einde van het leven. De praktijk en de toetsingsprocedure euthanasie. [Medical decisions at the end of life. The practice and the assessment procedure of euthanasia]. Utrecht: De Tijdstroom, 2003 Vander Stichele Robert, Bilsen Johan, Bernheim Jan, Mortier Freddy, Deliens Luc. “Drugs used for euthanasia in Flanders, Belgium.” Pharmacoepidemiology and Drug Safety 13 (2004): 89-95. Volker Deborah. “Oncology nurses’ experiences with requests for assisted dying from terminally ill patients with cancer.” Oncology Nursing Forum 28(1) (2001): 39-49. Volker Deborah. “Assisted dying and end-of-life symptom management.” Cancer Nursing 26(5) (2003): 392-399. Walker Margaret. Moral understandings. A feminist study in ethics. New York/London: Routledge, 1998. Walker Margaret. Moral contexts. New York/Oxford: Rowman & Litllefield Publishers, 2003.

Are We Barking Up the Wrong Tree? Questioning the Appropriateness of Human Models for Understanding Bereavement as Applied to the Experience of Companion Animal Loss through Euthanasia Susan Dawson and Bill Campbell Abstract This chapter describes a small scale, qualitative study of the lived human experience of companion animal euthanasia. In this empirical study a narrative method was employed to enable a multi-layered analysis of companion animal guardians’ voiced experiences post euthanasia of their companion animal. Interim findings suggest that the experience of choosing death for and bearing witness to the euthanasia event itself may function as a traumatic event for some closely bonded companion animal guardians. The findings further suggest that euthanasia of companion animals (CAs) may be perceived as a taboo subject even within companion animal (CA) owning communities, and may be dismissed by some members the non-CA owning community rendering the loss as disenfranchised. Guardians revealed the psychological representations of their CAs as that of a child-like being, friend or sibling for whom they were responsible for provision of protection and care. In discussion of the interim findings the appropriateness of applying human models of bereavement in seeking to understand and respond to the lived human experience of loss of a CA through euthanasia will be questioned. As a study in progress, possible implications for development of veterinary and counselling training to incorporate new discourse for explication of the human companion animal bond (HCAB) in relation to euthanasia of CAs is also highlighted. Keywords: Companion animal (CA) loss, animal euthanasia, human models ***** 1.

Introduction CAs can play hugely important roles in the lives of people. Approximately 1 in 2 (52.7%) of UK households own a CA.1 For the purpose of this study CA will mean dogs and cats which represent the most frequently owned CA, dogs 6.5 million and cats 9.2 million.2 The term companion animal will be used as the preferred term to reflect the changes in perception of the relationships people have with animals. Lagoni, Butler and Hetts point out that the use of the phrase “companion animal” implies reciprocity indicating, “a mutual relationship much more like friendship”.3 According to

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______________________________________________________________ Barton-Ross and Baron-Sorenson, “[c]hanges in human mobility and family structure have increased the likelihood of people forming significant attachments to pets,”4.There is a growing body of research from the USA into the HCAB and grief.5 This research has been influential in informing provision of veterinary training in the USA. Following an evidence based approach to practice on site provision of professional counselling by social workers and psychotherapists is offered at key teaching hospitals in the USA, e.g. The Animal Medical Centre New York, The University of Pennsylvania and Colorado State University. Whilst, The American Veterinary Association (AVA) has officially recognised the HCAB, the British Veterinary Association (BVA) has not. UK veterinary training programmes at present do not include specific training in the HCAB and grief, nor is there a history of any on site provision of counselling for bereaved CA guardians. The (first) researcher for this study, as a former veterinary nurse in small animal medicine, noted a lack of structured support for grieving CA guardians by veterinary staff. Where support is offered by counselling and veterinary professionals at present, human models are applied in the UK for understanding grief reactions to companion animal euthanasia (CAE), Bowlby, Kubler-Ross, Parkes and Worden.6 Despite a major difference as Fogle highlights, euthanasia is an accepted part of Western veterinary medicine but not a part of human medicine in the UK.7 Since a companion animal’s life-span is typically one fifth that of a person it is realistic to expect that an animal guardian could experience the loss of a CA a number of times. Although each guardian hopes that the animal will die naturally, in reality this is rarely the case.8 A majority of guardians will be left facing the moral complexities of a euthanasia decision. According to Stewart, “there may little support from outside the immediate family and no tradition of community support,” for these animal guardians.9 It should be borne in mind that within the CA owning community the closeness of attachment differs. Criticism of practice in the USA includes accusations of anthropomorphism and over sentimentalism. In no small part this reflects the complex and contradictory relationships people have with animals according to species and human psychological representations of individual animals. It may, at a cursory glance, appear that grief relating to the death of a CA is a modern phenomenon. However, the human-companion animal bond did not have its genesis purely in the twenty first century. Many species of dogs have lived in close associations with humans for thousands of years. The dog is thought to be the oldest domesticated animal having been domesticated at least 12,000 years ago with dogs being associated with human burials at sites in Israel dating back as far as 14,500 years ago. Although cats now compete with dogs in terms of popularity as companion animals their domestication history is shorter. However, the recent finding of a cat skeleton buried close to the remains of a human being in Cyprus

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______________________________________________________________ suggests that cats possibly were domesticated some 5,000 years earlier than previously believed around 9,500 years ago.10 Different theories currently exist to explain the relationships existing between people and their companion animals. Miller and Lago suggested that attachment between humans and pets is based on affectionate companionship, equal family member status, mutual physical activities, and dominance and submissiveness factors.11 Estep and Hetts hypothesised that an attachment forms because of proximity – an individual acting to maintain proximity to the attachment being or object and showing signs of separation anxiety when separated involuntarily from this object or being.12 Specific theories attempting to describe and explicate the human-companion animal bond (HCAB) include Wilson’s Biophilia hypothesis, “Biophilia if it exists, and I believe it exists, is the innately emotional affiliation of human beings to other organisms,” this would imply there is an intrinsic drive for people to connect with other living animals.13 Does this connection include an acceptance of responsibility for guardianship that incorporates the potential of making a life terminating choice for that being? Serpell likens the HCAB to a friendship much the same as human friendships.14 Zasloff and Kidd conceptualise the HCAB as a relationship that affords people and animals unconditional affection and love.15 Certainly it could appear that unconditional love may bring with it a duty of care and responsibility on the part of the human caregiver for the animal’s welfare and taking a euthanasia decision on behalf of an animal that cannot and will not ever be able to verbally articulate its own wish or desire to die may well be perceived as integral to HCAB. But is this the case? Or, are, perhaps, our companion animals psychologically represented as people? Anthropomorphised through projection and our own emotional identification to such an extent that taking a rational welfare decision on behalf of that animal may in reality of the lived experience feel more like murdering a family member? How is this unconditional affection and love related to the euthanasia decision that a majority of dog and cat guardians will inevitably face? Beck and Katcher argue that companion animals can actually be a representation of self, an extension of the self: Because we alternate the roles of the child and parent with our pets, the feeling of mutual love and devotion is understandable, not only because the pet carries some of the idealised attributes of the mother but also because the pet is the self.16 They go on to develop their argument putting forward that the “pet” may represent the self as an infant: “However most of the activity between person and pet casts the pet in the role of child – in essence, an infant loved by a human mother.”17 Should we then seek to understand not only the

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______________________________________________________________ relationship with our companion animals in a parent-child construct but also the decision to end that life as being one likened to ending the life of a child, or a part of the self? Other researchers, Enders-Slegers,18 Harker, McNicholas and Collis19 have described the HCAB in a wider societal construct of providing social support and companion animal keeping in itself acting as a social lubricant. Does that then infer that in choosing death for a companion animal an owner’s own social life or at least a part of it may also die? It may then seem appropriate to apply human models of bereavement to understanding the reactions owners have to the euthanasia of their companion animals but this is despite the fact that there is an absence of empirical evidence to support application of these models in this context. 2.

Current Dominant Professional Discourse Current models applied for understanding human grief reactions to companion animal euthanasia (CAE) in the UK, are all human bereavement models. These models do not take into account the specific nature of the HCAB or the unique situation of euthanasia in Western veterinary medicine. As Quackenbush points out euthanasia is “a major agent of death in nonhuman animals.”20 Unlike in human medicine passive euthanasia, e.g. withholding of nutrition, water, or treatment is not practiced by veterinary professionals. Euthanasia in veterinary medicine is an active process, involving the administration by injection of a barbiturate by a veterinary professional, usually at a guardian’s request, to bring about death of the animal. Indeed as well as it being a moral imperative, it is a legal requirement that people do not cause an animal suffer unnecessarily.21 It is interesting to note, though, that the option for active euthanasia of people to prevent suffering does not exist currently in the UK, a curious anomaly considering that animals are currently denied rights and personhood in law, yet are bestowed with protection from unnecessary suffering whereas a person is not. It begs the question is human life so sacrosanct as to warrant prolonging at any cost? It also highlights a massive difference between human and veterinary medicine. A recent study in the British Medical Journal investigating human euthanasia related grief in family members of people who were diagnosed with terminal cancer who had chosen euthanasia suggested that relatives showed fewer symptoms of post-traumatic stress disorder (PTSD) and of grief.22 Being prepared for the death and having an opportunity to say goodbye and talk more openly about what was happening was identified as possible major differences contributing to these findings. Again some stark differences are present in veterinary medicine; the animal is non-verbal and unable to communicate in words a desire to die. Whilst some guardians may claim they perceive their animals are communicating that they have given up or want to die, the decision is the guardians’ and not the animals’. This creates a massive power differential and issues of human

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______________________________________________________________ responsibility for the death. There is a lack of empirical evidence informing dominant professional discourse applied for understanding human reactions to companion animal euthanasia. Stewart, a veterinary surgeon and qualified counsellor, has produced an influential book aimed at veterinary professionals about companion animal death.23 She outlines Kubler-Ross’s five stage model as a possible construct for understanding clients’/owners’ reactions to receiving a terminal diagnosis or prognosis for their companion animal.24 Whatever one thinks of the importance of Kubler-Ross’s pioneering work to thanatology, it must be borne in mind that this model was generated from Kubler-Ross’s own clinical practice as a psychiatrist working with people who were terminally ill. If we take a view of the HCAB that supports the psychological representation of a companion animal as an extension of or as a part of self, then perhaps Kubler-Ross’s model is appropriate to be applied for understanding the grief reactions following companion animal death.25 But, the animal is not the physical self and the physical self lives on, it is the companion animal that dies, and in the case of euthanasia that dies at the request of the guardian. Is this then a part of the self that is being killed? To understand the representation of a companion animal purely as an extension of self is to surely deny the animal its own intrinsic value, personality and uniqueness as an animal that is fundamentally different to self. It could be argued that in viewing the HCAB as a form of narcissistic love it is possibly confusing empathy with another species with emotional identification and projection. Stewart also outlines Bowlby and Parke’s work on human bereavement.26 Although Stewart’s book marks a significant paradigm shift in UK veterinary medicine she is still relying on the accepted dominant professional discourse to conceptualise CA guardian grief. Worden’s “tasks of mourning” are often applied to bereaved companion animal owners.27 Perceiving grief as a process rather than as a state or condition Worden believed that people need to progress and “work” through the phases to adjust to the loss. All of these dominant models for understanding grief focus on the bereaved person “letting go,” “disengaging from bonds” with the deceased. An earlier empirical study conducted by Dawson and Campbell (2004) investigating the role of pet cemeteries and crematoria for grieving companion animal owners found that for all of the participants the experience of a continued bond either through ritual remembrance or continued talk of the deceased animal functioned as an important process within their grieving and adaptation to the loss.28 Klass, Silverman and Nickman put forward their Continuing Bonds Theory based on empirical evidence, but this theory is not applied to understanding companion animal owner’s grief in relation to euthanasia of their CA.29 It seems then there is may be some discrepancy between some bonded guardians’ lived experience of euthanasia and grief and the models currently applied for understanding. In part this may be because there is still no

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______________________________________________________________ dominant theory or model for explication of the HCAB that is based on lived experience. 3.

Methodology and Method Rooted in Relational and Transpersonal psychology paradigms, this study was conducted as an Organic Inquiry (OI).30 OI is a narrative approach to researching in human science and shares many of its origins in phenomenology and heuristic methods and emancipatory approaches to research. This methodology was seen as appropriate rather than a reductivist, positivist approach, as it places a premium on feelings as a legitimate source of data and data analysis, as much as cognition. In investigating the lived experience of companion animal euthanasia for bonded guardians it is impossible to escape from the feelings associated with choosing death for a terminally ill or permanently disabled companion animal. OI holds the principles of the sacred and the transformative as central to the research process and design. For the purpose of this study the sacred was identified as the life force – as life itself. The researcher’s own personal experience of companion animal euthanasia of her dog, Oliver, was included as data in line with emancipatory approaches to research.31 Indeed in line with OI principles this lived experience of the euthanasia of Oliver was the seed from which the present research study grew. Two veterinary practices from the North of England were chosen as convenience samples and one pet cemetery/crematorium. Participants self-selected in response to a poster or letter and were an opportunity sample of people willing to take part who had recently lost a companion animal through euthanasia following a terminal prognosis. Two semi-structured interviews were carried out, the second interview acted as a resonance meeting in which the researcher shared her interpretation of the data from the first interview. Conversations were audiotaped and transcribed verbatim. The verbatim transcripts were then swept off the researcher’s questions, prompts and participants’ hesitations. From the swept narratives a stanza narrative was produced of the story. 32 These three texts were used to enable a multi-layered analysis employing a voice relational approach33. 4.

Interim-Findings and Discussion Eighteen CA guardians participated in this study and were an opportunity sample of people willing to take part. The researcher’s own narrative was included within the study. There were ten dog guardians three of whom were male and eight cat guardians, three of whom were male. Ages ranged from twenty one to seventy two. All were white and of Western origin. Eight of the euthanasia’s were carried out at home.

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______________________________________________________________ Individual stanza narratives (poems) were generated for each participant, but common plots were located in guardians’ narratives, themes and patterns emerged that were present across the narratives. These along with characterisations representing inter-personal relationships between guardian and animal were visually represented through a form of narrative mapping constructed as a story-tree. Participants’ talk consisted of different narrative constructs, the majority opened as a life story narrative beginning with the adoption, birth or rescue of the animal. Where the opening was not constructed as a life story narrative it was noticeably an illness narrative usually starting with the onset of visible symptoms. Most noticeable was an initial avoidance of the euthanasia event itself. From the mention of the visible onset of disease the narratives were restructured as illness narratives progressing through the illness trajectory to the quality of life decision making process and ultimate euthanasia event. Talk describing the euthanasia event was punctuated with adjectives such as awfulness, nightmare and the evocative Hammer House of Horror, used by one cat guardian in relation to what she termed as the pragmatism of choosing the exact time of death for her cat. Euphemisms were used by all but three of the participants for euthanasia, put to sleep, put down, and passed away. Where not used the words kill and killed were frequently replaced euphemisms. Some participants questioned the meaning of the word euthanasia, either at the start of the conversation, or when the tape recorder was turned off, suggesting, some embarrassment associated with being uncertain as what the word meant. Three participants voiced off tape that they thought the term euthanasia was exclusive to human beings, which seemed quite paradoxical as active euthanasia is not legal in human medicine in the UK. Two of the euthanasia procedures were described as going wrong, one of these perceived by the owner, Dorothy, to have gone badly wrong resulting in her experiencing considerable distress, flashbacks and extreme feelings of guilt. “I feel guilty now with what’s happened because he trusted me and I held him whilst the vet put him to sleep and I just feel guilty now that I did that because he trusted me.” Common concepts within participants’ narratives were those of guilt and responsibility, often being interchanged and at times used as though they were synonymous feelings, at different points in the story. These feelings of guilt, in particular, were sometimes perceived as being complicated by circumstances considered by the guardian as being beyond their control, e.g., a lack of money to enable payment for medical tests that may have confirmed a diagnosis or indeed pay for medical treatment, or the action of a veterinary surgeon, as in Dorothy’s experience where she perceived the procedure had been rushed resulting in Sefton struggling, “fighting” the euthanasia, “all the way.” Talk of guilt in relation to the euthanasia decision that may have been, in part, mediated by financial constraints was often more extensive when the tape recorder was switched.

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______________________________________________________________ For Sam, a human nurse, her feelings of guilt were implicit in her use of the word kill to describe the act of euthanasia of her cat Cloe. Sam confided that as a nurse in palliative care she had participated in numerous passive euthanasia and “double effect” euthanasia of people, but her talk revealed that she experienced choosing death for her cat as far more difficult than being an agent of death herself for a terminally ill person What appeared to be a complicating factor in producing feelings of doubts was the lack of a diagnosis but delivery of a terminal prognosis by a veterinary professional; and quality of life markers such eating, sleeping, going on walks that were still present despite extreme old age degeneration or other disease process being present. What appeared to be a temporary remission or “perking up” of the animal was described by some of the participants, just prior to the euthanasia, this was spoken about as a source of doubt, the researcher’s interpretation of this is that probably it is complicated by the fact that animals cannot communicate their physical or emotional states verbally to people. Ray’s talk of his dog Squeak Beast in relation to her appearing perky when she saw him in the veterinary surgery illustrates this source of doubt. “What threw me a bit when I was in the consulting room and the vet brought Squeak in she seemed quite perky and it did give me pause for thought.” Nearly half of the participants talk of perceiving some form of non-verbal communication between themselves and their companion animal of giving up. It is possible they felt this helped them with the decision to euthanase. One participant, Lin, spoke of her distress at not being able to get her usual practice vet to make a home visit to euthanase her sixteen and a half year old dog, Brandy. She was left having to resort to help from a friend who called a different practice to get a vet to come to her home to euthanase her dog. Lin’s narrative highlights some recurrent themes from other participant’s narratives in terms of the taboo of euthanasia as an event and the anxieties that this may bring about. Lin is fearful of what the injection might do to their insides, and imagines that there could be some internal haemorrhaging. Her narrative captures the “surreal experience” of lived time both leading up to the event of the euthanasia, “counting down their life,” and the event itself. Lin says that she cannot remember the words of the vet nor the vet taking her stethoscope to listen to Brandy’s heart after the euthanasia. Lin’s talk tells us that she does not believe Brandy is dead so much so she is distressed by leaving her at the cemetery in the chapel of rest because she doesn’t think she is dead. She talks of still seeing her rib cage moving and thinking she is breathing. The suddenness and speed of death by euthanasia “it took just two seconds” - is a source of shock and disbelief for Lin. The concept of euthanasia as a taboo subject is present either implicitly or explicitly in the talk of most participants, although the word itself is not used by all but three participants, being replaced by euphemisms.

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______________________________________________________________ The descriptions of sensory experiences suggest a heightening of perception to stimuli at the time of the euthanasia, such as smells, sounds, movements in their animal particularly at the time of injection, and other tactile experiences associated with the event. Several participants’ talk alluded to events feeling magnified and “surreal” at the time of the euthanasia, linking closely to their experience of lived time as different to real measured time. Differences in time distortion as experienced at the time of the euthanasia event existed in the talk of people experiencing lived time either as more slowly or more quickly compared to real measured time. Participants’ narratives reveal individual psychological representations of their companion animals, “baby, kiddies, children, best friend, sister, like a daughter, a part of me, the little brother I never had, family member.” The most frequently occurring psychological representation was that of the companion animal as a child or “child-like” being dependent on the owner, a “parent like” being. Analysis of the wider cultural and societal contexts of individuals’ experiences of the euthanasia of their companion animal seemed to reveal that emotional support was derived from other companion animal guardians, in some instances the veterinary surgeon. Euthanasia as an event appeared not to be discussed, particularly in any detail even with family members. Continued talk about the deceased animal in terms of their individual personalities and behaviour was seen by over half of the participants as a part of a bond and a form of keeping the deceased animal’s memory alive. This is a small scale qualitative study; generalisations to the wider companion animal keeping community cannot be made. Analysis has not taken into account cultural or religious beliefs that may well be very influential on perceptions of euthanasia and attitude formation. All of the participants are white and of UK origin. What appears most striking from the interim findings is that the euthanasia event itself may serve as a significant stressor and a traumatic event for some closely bonded animal guardians. Whereas feelings of guilt are viewed by thanatologists as relatively normal after a death, direct responsibility for a companion animal’s death through euthanasia does lie totally with the guardian. The animal cannot communicate a desire to die explicitly using language in the way that most people may do. Whereas disbelief is an accepted part of the dominant discourse on grief the origins of the disbelief appear to be split for animal guardians. Disbelief the animal was dead linked to the quickness of a euthanasia death and disbelief at themselves at having chosen death for their animal. This may suggest something of the intra-personal process taking place in relation to shifts in perception of self identity for a companion animal guardian linked to the euthanasia decision. Euthanasia as an event is talked of as taboo, the word itself replaced by euphemisms; there are no or very limited opportunities for owners to talk openly and in detail about the euthanasia event itself, this may

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______________________________________________________________ be further complicated by a wider societal trivialisation of companion animal loss. Implications for veterinary practice, veterinary surgeon and nurse/technician training may well be that as professionals we need to talk more openly and more often about euthanasia as an event. Most significantly in the UK veterinary training may need to include new discourse in understanding the HCAB specifically in relation to life terminating choices and euthanasia as an event. As companion animal guardians possibly we need to break our silence and talk about this experience in detail to each other. The essential shortcoming of dominant models for understanding human bereavement may when applied for understanding companion animal death through euthanasia be located in the experience of the euthanasia decision making and event itself. Human beings rarely have direct responsibility for the death of another human being unless through murder or in UK medicine, perhaps a medical professional involved in passive euthanasia. But unique to companion animal euthanasia as the interim findings from this study show is direct personal responsibility for the death for another being and the strength of associated feelings that come with this responsibility. CAs may well be perceived as a family member or as a part of the self. The guilt linked to direct responsibility is therefore very different from feelings of guilt where no actual responsibility for the death exists. Ironically so, since as guardians this direct responsibility comes with a lack of ultimate power and control over the means of the death event itself. This power is transferred to veterinary professionals who administer the barbiturate that ultimately brings about death. Responsibility without power and control is known as direct stressor, the narratives of this study highlight how this unavoidable transference of power can impact on the owners and on the deaths of the animals. These interim findings suggest there may be a need to reconceptualise models applied to understanding the lived human experience of companion animal euthanasia, to accommodate the unique facets of this experience in relation to the human-companion animal bond, acknowledging the responsibility and duty of care people have towards companion animals in order to prevent unnecessary suffering. All but one of the participants in this study said that they did not feel that counselling would have helped them, despite the majority of these participants acknowledging the value of being enabled to talk about the event of the euthanasia and the circumstances around the decision making process, in detail, within the process of participating this research. If euthanasia is a taboo subject un-talked about and if companion animal death itself is minimised and marginalised in wider society, as this study’s participants’ talk would suggest, this has implications that CA euthanasia represents a disenfranchised loss in our society, largely unrecognised outside of the companion animal owning community. Furthermore we know by the existence of animal welfare charities that not all

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______________________________________________________________ the companion animal owning community is bonded with the animals in their care. How then can models for understanding human bereavement appropriately be applied in this context?

Notes 1. PFMA (Pet Food Manufacturers’ Association) Pet Ownership, Pet Population Trends Facts and Figures 8th January 2003(3rd October, 2003) http://www.pfma.com/petownershipstats.htm 2. Ibid. 3. Lagoni, L., Butler, C., and Hetts, S. The Human-Animal Bond and Grief, (Philadelphia: WB Saunders Company, 1994), 4 4. Barton-Ross, C. and Baron-Sorenson, J. Pet Loss and Human EmotionGuiding Clients Through Grief (Accelerated Development, Philadelphia: Taylor and Francis, 1998), 4-5 Lagoni, Butler and Hetts, ibid. developed a “bond centred” approach to veterinary medicine which places the human-companion animal bond as central to practice. They are founders of The Changes Programme for support for owners at The Argus Institute for Families and Veterinary Medicine, Colorado State University. 5. Bowlby, J. Attachment and Loss: Vol. 1: Attachment. (London: The Hogarth Press, 1969) Bowlby, J. Attachment and Loss: Vol. 3: Loss, Sadness and Depression. (London: The Hogarth Press, 1980). Kubler-Ross, E. On Death and Dying. (New York: Macmillan, 1969). Parkes, C.M. Bereavement Studies on Grief in Adult Life. (Harmondsworth: Penguin, 1972). Parkes, C.M. Bereavement Studies on Grief in Adult Life. 2nd edition. (London: Routledge, 1986). Worden, J. W. Grief Counselling and Grief Therapy. (New York: Springer Publishing, 1982). Worden, J. W. Grief Counselling and Grief Therapy, 2nd edition. (New York: Springer Publishing, (1991.) 6. Fogle, B. It’s Your Loss So Cry if You Want To. In SCAS, Death of an animal Friend, (Scotland: SCAS, 1990), 20-23. SCAS (Society for Companion Animal Studies, UK). 7. Woodcock, D.A. Loving Farewell. (Berkshire: Dog Sense Publications, 2000), 6. 8. Stewart, M. Companion Animal. (Woburn: Butterworth-Heinemann, 1999), 42, 50.

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______________________________________________________________ 9.

Pennisi, E. (2004). “Burials in Cyprus Suggest Cats Were Ancient Pets,” in Science. Vol. 304, issue 5668; 189 retrieved online 1/09/04 http://www.sciencemag.org/cgi/content/full/304/5668/189a 10. Miller, M. and Lago, D. Observed pet owner –in-home interactions: species differences and associations with the pet relationship scale. Anthrozoos, 4 (1990): 49-54 11. Estep, D.Q., and Hetts, S.: Interactions, relationships and bonds: The conceptual basis for scientist-animal relations. In Davis, H., and Balfour, D. eds.: The Inevitable Bond: Examining Scientist-Animal Interactions, (New York, Cambridge University Press, 1992): 6-26 12. Wilson, E.O. Biophilia and The Conservation Ethic. In The Biophilia Hypothesis, eds. Kellert, S. and Wilson, E. O. (Washington DC: Island Press, 1993): 31. 13. Serpell, J. Humans, animals, and the limits of friendship. In TheDialectics of Friendship, ed. R. Porter and Tomaselli. (London: Routledge, 1989): 111-29. 14. Zasloff, R.L. and Kidd, A.H. Attachment to Feline Companions. In Psychological Reports, 74, (1994):747-752. 15. Beck, A. and Katcher, A. Between Pets and People: The Importance of Animal Companionship. (Indianna, Purdue University Press, 1996):71 16. Ibid 17. Enders-Slegers, M.J.Human-cat interactions: relationships with, and breed differences between, non-pedigree, Persian and Siamese cats. In Companion Animals and us Exploring the Relationships Between People and Pets. Edited by, Podberscek, E.S. and Serpell, J.A. (Cambridge, Cambridge University Press, 2000): 238-239 18. Harker, R.M., Collis, G.M. and McNicholas, J. The influence of current relationships upon pet animal acquisition. Companion Animals and Us – Exploring the Relationships Between People and Pets, eds. In Podberscek, A.L., Paul, E. and Serpell, J.A. (Cambridge University Press, Cambridge, 2000):189-206 19. Quakenbush, J. E., Euthanasia as an ethical Dilemma. In Euthanasia of the Companion Animal: The impact on Pet Owners, Veterinarians and Society. Edited by Kay, W.J., Cohen, S. Philips. Et al (Philadelphia, The Charles Press Publishers, 1988):9 20. Protection of Animals Act, Chapter 27, 1a, February 12th 2004, (20th November 2004) http://www.webtribe.net/protectionofanimalsact/.htm 21. Swarte, N.B., et al, “Effects of euthanasia on the bereaved family and friends: a cross sectional Study.” British Medical Journal, 327(7408) (26th July, 2003): 189 22. Stewart, M. Companion Anima Death. (Woburn: ButterworthHeinemann, 1999), 36-41 23. Kubler-Ross E On Death & Dying. (New York: Macmillan, 1969): 36

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______________________________________________________________ 24.

Ibid Bowlby, J. and Parkes, C.M. Separation and Loss Within the Family. In, The Child and His Family. Edited by, Anthony, E.J. and Koupernik, C. (New York, Wiley: 1970) 26. Worden, J.W. Grief Counselling and Grief Therapy, 2nd edition (New York: Springer Publishing, 1982) 27. Dawson, S. and Campbell, W. A Continuing Bond? Owners’ perceptions of the role and significance of the pet cemetery /crematorium in grieving the death of their companion animal. Conference paper presented at The International Association of Human-Animal Interaction Organisations, 2004. 28. Klass, D. Silverman, P.R. and Silverman, N.L. Continuing Bonds: New Understandings of Grief. (Taylor Francis, Washington DC.1996). 29. Clements, J., Ettling, D., Jennet, D., and Shields, L. Organic Inquiry (USA: Draft manuscript, 1999): 5, 9, 12, 18, 53, 61, 76. 30. Reinhartz, S. Feminist Methods in Social Research. (New York: Oxford University Press, 1992). 31. McLeod, J and Balamoutsou, S. A Method for Qualitative Narrative Analysis of Psychotherapy Transcripts.28th November, 2000, (1st November, 2004) http://shs.tay.ac.uk/shtjm/NARRANAL.finalversion.htm 32. Brown, L.M. and Gilligan, C. Meeting at the Crossroads: Women’s Psychology and Girls’ Development. (Cambridge, MA: Harvard University Press, 1992). 25.

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Bibliography Barton-Ross, C. and Baron-Sorenson, J. Pet Loss and Human EmotionGuiding Clients Through Grief Accelerated Development, Philadelphia: Taylor and Francis, 1998. Beck, A. and Katcher, A. Between Pets and People: The Importance of Animal Companionship. Indianna, Purdue University Press, 1996 Bowlby, J. Attachment and Loss: Vol. 1: Attachment. London: The Hogarth Press, 1969. Bowlby, J. Attachment and Loss: Vol. 3: Loss, Sadness and Depression. London: The Hogarth Press, 1980. Bowlby, J. and Parkes, C.M. Separation and Loss Within the Family. In, The Child and His Family. Edited by, Anthony, E.J. and Koupernik, C. New York, Wiley, 1970. The British Psychological Society, Ethical Principles for Research with Human Subjects Bulletin of the British Psychological Society, Leicester: BPS, 1978. Brown, L.M. and Gilligan, C. Meeting at the Crossroads: Women’s Psychology and Girls’ Development. Cambridge, MA: Harvard University Press, 1992. Clements, J., Ettling, D., Jennet, D., and Shields, L. Organic Inquiry. USA: Draft manuscript, 1999. Dawson, S., Campbell, B. and Johnson, M. A Continuing Bond? Owners’ perceptions of the role and significance of the pet cemetery /crematorium in grieving the death of their companion animal. Conference paper presented at The International Association of Human-Animal Interaction Organisations, 2004. Enders-Slegers, M.J. Human-cat interactions: relationships with, and breed differences between, non-pedigree, Persian and Siamese cats. In Companion Animals and us: Exploring the Relationships Between People and Pets. Edited by, Podberscek, A. Paul, E.S. and Serpell, J.A, 238- 239. Cambridge, Cambridge University Press, 2003.

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Estep, D.Q., and Hetts, S.: Interactions, relationships and bonds: The conceptual basis for scientist-animal relations. In Davis, H., and Balfour, D. eds.: The Inevitable Bond: Examining Scientist-Animal Interactions, New York, Cambridge University Press, 1992. Everly, G.E. Jnr., and Mitchell, T. A Primer on Critical Incident Stress Management (CISM). The International Critical Incident Stress Foundation. from (23/11/04). Fogle, B. It’s Your Loss So Cry if You Want To. In SCAS, Death of an Animal Friend, Scotland: SCAS, 1990. HMSO, Protection of Animals Act, 1911 Chapter 27, 1a, February 12th 2004, http://www.webtribe.net/protectionofanimalsact/.htm (20th November 2004) Klass, D. Silverman, P.R. and Silverman, N.L. Continuing Bonds: New Understandings of Grief. Taylor Francis, Washington DC, 1996. Kubler-Ross, E. On Death and Dying. New York: Macmillan, 1969. Lagoni, L., Butler, C., & Hetts, S. The Human –Animal Bond and Grief, Philadelphia: WB Saunders Company, 1994. McLeod, J and Balamoutsou, S. A Method for Qualitative Narrative Analysis of Psychotherapy Transcripts.28th November, 2000, http://shs.tay.ac.uk/shtjm/NARRANAL.finalversion.htm (1st November, 2004). Miller, M. and Lago, D.. Observed pet owner –in-home interactions: species differences and associations with the pet relationship scale. Anthrozoos, 4 (1990): 49-54 Parkes, C.M. Bereavement Studies on Grief in Adult Life. Harmondsworth: Penguin, 1972. Parkes, C.M. Bereavement Studies on Grief in Adult Life. 2nd edition. London: Routledge, 1986.

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Pennisi, E. (2004).” Burials in Cyprus Suggest Cats Were Ancient Pets,” in Science. Vol. 304, issue 5668; 189 retrieved online 1/09/04 PFMA (Pet Food Manufacturers’ Association) Pet Ownership, Pet January 2003. Population Trends Facts and Figures 8th (3rd October, 2003). Podberscek, A.L., Paul, E. and Serpell, J.A. Companion Animals and Us – Exploring the Relationships Between People and Pets. Cambridge University Press, Cambridge, 2000 Quakenbush, J. E., Euthanasia as an ethical Dilemma. In Euthanasia of the Companion Animal: The impact on Pet Owners, Veterinarians and Society. Edited by Kay, W.J., Cohen, S. Philips., Fudin, C.E., Kutscher, A. H., Nieburg, H.A., Grey, R.E. & Osman, M. M.Philadelphia, The Charles Press Publishers, 1988. Reinhartz, S. Feminist Methods in Social Research. New York: Oxford University Press1992. Serpell, J. Humans, animals, and the limits of friendship. In The Dialectics of Friendship, ed. R. Porter and Tomaselli. London: Routledge, 1989. Swarte, N.B., van der Lee, M., van der Bom, J.G., van der Bout, J. & Heintz, P.M.”Effects of euthanasia on the bereaved family and friends: a cross sectional study.” British Medical Journal, 327(7408) (26th July, 2003): 189 Stewart, M. Companion Animal Death. Woburn: Butterworth-Heinemann, 1999. Wilson, E.O. Biophilia and the Conservation Ethic. In Kellert, S. R. and Wilson, E. O. The Biophilia Hypothesis. Washington DC: Island Press, 1993. Woodcock, D.A. Loving Farewell. Berkshire: Dog Sense Publications, 2000. Worden, J. W. Grief Counselling and Grief Therapy. New York: Springer Publishing, 1982.

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______________________________________________________________ Worden, J. W. Grief Counselling and Grief Therapy, 2nd edition. New York: Springer Publishing, 1991. Zasloff, R.L. and Kidd, A.H. Attachment to Feline Companions. In Psychological Reports, 74, (1994):747-752.

Section 3

Mourning

The Saying Hallo Metaphor as Alternative Approach to Death-Related Counselling Werner Nell Abstract In this paper it is suggested that therapeutic endeavours designed to aid clients who are struggling with protracted grief and mourning over the loss of a loved one might be enhanced by the incorporation of specific strategies based on the saying hallo metaphor. This metaphor is proposed as a reversal of a currently prominent narrative on death, which suggests a need to say goodbye to the deceased. Following this, alternative practices, informed by the saying hallo metaphor, such as the use of letter writing, the imagination, remembering, rituals, and dreams are explored. Keywords: Counselling, continuing bonds, narrative therapy, death, grief, metaphor ***** The Saying Goodbye Metaphor A natural part of life for most people involves dealing with the death of a loved one. Although this experience is usually traumatic and painful for the individuals involved, many people are eventually able to adjust to the loss and find a degree of resolution to their mourning. However, many other individuals find themselves unable to deal with the loss and resolve their grief. In such instances, these individuals sometimes turn to psychologists, therapists, counsellors, priests, Rabbi’s, and other individuals for assistance. In response to this situation, a variety of therapeutic models and interventions have been developed in order to address this need for grief related counselling. The majority of these approaches, despite differing methodologies, seem to be constructed upon the belief that death implies a total loss and separation, and that the adequate resolution of grief is dependent upon acceptance of this loss, and on ‘letting go’ of the deceased. Most models of grief counselling considered the counselling process to be successful when the person was able to resume his life without the loved one. It is further implied that having an ongoing attachment to the deceased, and having a healthy relationship with life are mutually exclusive states of being. As such, the metaphor of saying goodbye has been proposed as an apt description to refer to these beliefs about death. 1 2 Although methods informed by the saying goodbye metaphor have proved helpful to many individuals, they often seem to be ineffective in 1.

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______________________________________________________________ assisting other ones in the resolution of their grief; and at times even produce counterproductive outcomes.3 Many individuals find themselves unable to adjust to the loss of a loved one even after undergoing counselling or therapy. This suggests that there is a need for an alternative approach to death-related counselling which could be utilized when such approaches to counselling or therapy fail. The inherent limitations underlying the saying goodbye approach have been challenged by several researchers, which led to the establishment of an alternative approach with regard to dealing with the loss of a loved one. This approach, which is sometimes referred to as the “continuing bonds” approach, reflects the belief that in many ways the relationship with the deceased can be maintained and even enhanced.4 In the context of Narrative Therapy this idea seems to be most clearly articulated in the above-mentioned (footnote 1) article of Michael White.5 In this article, White referred to what he termed the saying hallo metaphor, and described an alternative approach to grief counselling, based on a diametrically opposed set of assumptions that works with the person’s wish to hold on to the deceased loved one, instead of against it. The Saying Hallo Metaphor The saying hallo metaphor suggests that the relationship with a deceased person can be re-established and strengthened in a therapeutic context, thereby assisting an individual to resolve protracted grief. From this perspective, the loss of a loved one need not be final and total. Although there is indeed such a loss as far as the physical presence of the deceased is concerned, on other levels the influence, memories, and legacy of the deceased will continue to exert an influence in the life of those left behind. Such memories or words of wisdom can continue to be a source of strength, comfort, and inspiration in the future. The saying hallo metaphor invites people to recognize, validate, honour, expand, and even celebrate their relationship to the deceased. In White’s own words: 2.

Such is the desolation that these persons experience, that establishing a context in therapy for the incorporation of the lost relationship seems far more strongly indicated than further efforts at encouraging the forfeiture of this relationship…. The aim of practices informed by the saying hallo metaphor is to open up the possibility for persons to reclaim their relationship with the lost loved one.6 Unfortunately White’s article was brief and directed mostly at a limited audience of narrative therapists. In addition, the saying hallo metaphor was presented mostly conceptually and apart from two case studies,

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______________________________________________________________ little idea was given as to the various ways in which this metaphor might be applied in a practical manner during the course of grief counselling. It was therefore felt that a need exists for the discussion of specific, practical strategies for applying the saying hallo metaphor in such a context. Based on this the author synthesized, adapted, and reinterpreted existing counselling strategies informed by the saying goodbye map according to the contrary assumptions underlying the saying hallo metaphor. The intention was to expand upon the basic premises underlying the saying hallo discourse in order to develop and propose specific alternative strategies for dealing with protracted grief, which are broadly based upon a narrative approach. These included the use of letters, employing the imagination, rituals, the use of collages and photographs, visiting the grave and dreams. Although many of these approaches are commonly used in therapeutic contexts, this is often done from a saying goodbye perspective. It is believed that these techniques can also be employed successfully in order to facilitate a saying hallo process, thereby providing an alternative approach to grief counsellors in instances where approaches informed by the saying goodbye map of therapy fail. 3. Applications of the Saying Hallo Metaphor A. Using letters in grief therapy to facilitate a saying hallo process The use of letter writing in therapy can be a very powerful means to effect therapeutic change, and as such, is often used in the context of general counselling.7 In Western culture, writing is accorded an elevated status, and what is written down is perceived as having more weight. White and Epston support this idea when they say that: Not only does written language free persons of the constraints established by the limited temporal and informational capacity of focal consciousness, in that we have time to let our attention roam over a large amount of information and devote itself to a more deliberate organization of linguistic resources, but also provides the mechanism whereby the informational content of idea units can be significantly increased, and by which these idea units can be reorganized in different relations of dependence. Thus… we would argue for the introduction of the written tradition in therapy, in that it potentially provides for an expansion of the information that can be processed in our short-term memory at any one point in time… Writing provides one mechanism through which persons can be more active in determining the arrangement

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______________________________________________________________ of information and experience and in producing different accounts of events and experience. 8 These ideas would argue for the incorporation of written language in the context of therapy. Because of the added power that is accorded to what is written down, the possibilities for such written documents to effect a therapeutic change are enhanced. An added benefit of this practice is in the continuation of therapy that such a method engenders, in that the therapeutic process can be extended beyond the confines of the face-to-face counselling session. The saying hallo metaphor can be integrated very well within the context of letter writing, and this section examines some of the ways in which this might be accomplished. Therapists’ Letters to Clients Therapists can send summary letters after each session in which the loss, with its concomitant pain and grief is voiced and acknowledged, and in which any saying hallo process that has taken place in therapy can be summarized, thereby adding subjective weight to it. The letter can become a document that the client can refer back to when he wants to do so in order to reconnect with the memory of the deceased. Utilizing letters in this way can greatly extend and enhance the therapeutic potential of any techniques informed by the saying hallo metaphor that are used in therapy. Therapists could also include saying hallo questions in a letter so that the person can contemplate them at his or her own leisure. The reflexivity induced by questions that are carefully structured according to a saying hallo perspective can serve to put the person more in touch with the memory of the deceased one and to thereby instigate or further the saying hallo process. Examples of such questions include: “What are the most important things you have learned from X?”, “How could you honour X’s memory and influence in your life?”, “How are you a better person for having known X?” In answering these questions the client is invited to reconnect with the memory of the deceased and the relationship that was shared between them. As such, these memories will likely become more accessible to the client, which could serve to attenuate feelings of grief, loss, and isolation engendered by the death of a loved one. The value of letter writing extends beyond that of letters written by the therapist, and also includes letters written by the treated persons in order to facilitate the saying hallo process, as the next section illustrates.

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______________________________________________________________ Writing a Letter to the Deceased Person In some cases, clients can be encouraged to write a letter to a deceased loved one in order to facilitate a “saying hallo again” process. 9 No set rules are given for this type of letter, as this would be unnecessarily limiting and thereby counterproductive. In this type of letter the writer simply expresses her feelings, hurts, fears, unsaid issues, etc. to the deceased person as if she were actually talking to this individual. This can be accomplished in any format that she finds personally meaningful. It is important that the client expresses herself honestly and authentically, and not suppress any distressing feelings, even if these are negative emotions such as anger or hurt. By writing a letter such as this, a channel is created for the expression of thoughts and emotions that otherwise might have gone unexpressed. As such, people often experience the mere act of writing such a letter as helpful in a therapeutic sense. Kennedy puts forward the following suggestions for the writing of such a letter: …write about what experiences you have been through since your loved one died, what you miss, what you have learned about yourself and the relationship, what you appreciate and resent in your relationship, what you want to carry on. If certain issues have surfaced since the death, or issues have begun to bother you that were never addressed when the person was alive, write about these… Express yourself honestly and authentically, not avoiding or dampening your real feelings, even if they are distressingly negative. 10 Commonly, when writing such letters, persons often experience significant shifts in their grief as they write these letters, as well as a sense of increased connectedness with the deceased, which enables them to better bear the pain of the loss. 11 The Person Writing a Letter to Oneself from the Deceased Person Treated persons can also be invited to write a letter to themselves from the deceased person. Such a suggestion often follows on the writing of a letter to the deceased person by the person. In this process, the person basically answers his own letter as if he were the deceased person. These letters are intended to instigate a position of reflexivity in the person from where he can perceive his own situation from a new perspective (in this case, that of the deceased), a process which is often generative of therapeutic change. Through writing such a letter, the person is extricated from his own vantage point. He is prompted to see and experience his own situation

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______________________________________________________________ differently. New insights and realizations that might have been invisible before, may now present themselves. Understandings that were obscured by his previous vantage point may now emerge more clearly. New meaning is created around a particular situation related to the death of the loved one. With this, new opportunities for change arise. A variation of this approach that may sometimes be preferred by persons who are so inclined, would be to capture their own feelings or the perceived feelings of a deceased loved one in a poem or story. This written document can then be kept with them and read at times when comfort is needed. B. Using the Imagination to Say Hallo Again The use of the imagination to re-establish a connection with the deceased person builds on a natural tendency inherent in people after the death of someone they love. People often spontaneously engage in conversations with such a person. Many of us secretly or unconsciously attempt to carry on a lost dialogue with a loved one. For example, a person might talk to a deceased spouse over morning coffee. A grieving mother might converse with her deceased child while sorting through his toys and clothes. Often, people keep these communications secret for fear of being misunderstood by the living. They hold these conversations without any understanding of the rich possibilities for healing. If dialogue is so critical to our well-being and existence, how can we recover a dialogue that has been lost through the death of a loved one? How can we transform an absence into a presence? The answer is by vitalizing our urge to communicate with our developing imagination.12 This technique therefore validates and builds upon people’s natural inclinations, needs and responses to the death of a loved one rather than imposing an unnatural process. From a narrative perspective, the idea that a relationship between two people has an objective or fixed nature would be questioned. Such an approach would support the view that each person constructs his own reality about the relationship on the basis of the shared lived experiences of the parties involved. It is not what happens between people which determines their relationship, but how these happenings are constructed or “storied.” As such, these relationship experiences can be re-storied or reinterpreted, thereby re-authoring the story about the relationship. This would have real effects on the perceived nature and quality of the relationship. This relates to the notion

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______________________________________________________________ that it is not the event or situation, but the meaning that was attributed to that event or situation that survives across time. As there always exists alternative ways to interpret any event or experience, these meanings can be changed, thereby changing a person’s entire view of a particular event or experience. These ideas have several noteworthy implications. Firstly, it is not necessary for the other individual to be present or even alive in order to reauthor a relationship. Also, as the experience and view of any relationship is seen as being socially constructed, the implication is that it can be deconstructed and reconstructed in a more preferred way. As many of the problems that people experience after the death of a loved one relate to unresolved issues, and as using the imagination allows people to deal with such issues, the inherent therapeutic potential of the above-mentioned approach is rendered even more powerful. Regret over things that were never said or done often intensifies the sense of loss that accompanies the death of a loved one. This will likely have a negative impact on a person’s ability to deal with the loss. By using the imagination to reconnect with the loved one who has died, the client is given the opportunity to deal constructively with many, if not most of these unresolved issues. The unsaid can be said, apologies can be made, anger can be expressed, and feelings can be shared. The imagination serves as a particularly useful tool for enabling the reconnecting and the subsequent re-authoring of a relationship. It can reverse the sense of finality and isolation that often accompany attempts to deal with the loss according to a saying goodbye map. The therapeutic use of the imagination is not a new phenomenon. Many other cultures have turned to the imagination as a valuable resource for grieving. For thousands of years, shamans throughout the world have travelled in a trance state into invisible worlds to consult with the spirits of the dead and serving as messengers between the worlds. In the Medieval Ages, the common practice of holding conversations with the soul of the departed provided comfort and reassurance to those who were grieving. In many cultures, then, death is no barrier to communication because they have actively utilized the imagination when faced with this inevitable transition. Although the imagination has become relegated to the realm of fantasy and wishful thinking in more recent times, many contemporary authors and practitioners in different fields, including modern medicine and psychology, have researched, written about, and used imagination in their work with clients. “All have come to a similar conclusion, that imagination has been an important resource for healing since the beginning of history, and it is time for our culture to acknowledge its usefulness for healing both body and psyche” 13

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______________________________________________________________ Technique for Using the Imagination A method proposed by Kennedy suggests using visualization and relaxation exercises to put oneself in a more inwardly attuned state and to then visualize an interaction with the deceased person.14 Very often, the person does not appear or act the way in which the person might have expected him to. The treated person is asked to just stay in the situation and let the interaction unfold of its own accord. In this stage the person can share his unexpressed feelings, thoughts and questions with the loved one and allow him or her to answer back. The person can share his regrets, anger, love or anything else that he chooses to. The person is encouraged not to edit or interfere with the process but to follow it wherever it might go. When there is a sense of a “shift” having been made, the person can choose to close the meeting and exit his imagination. The person might want to reflect on this experience and continue to have regular internal conversations with the image of the deceased person until he or she no longer feels the need for such interaction. Glouberman describes a similar process and also suggests the additional possibility of the treated person imagining the deceased person sitting in a chair opposite him or her, and then holding a conversation with this person. The treated person after having asked a question moves to the opposite chair and then answers for the deceased person. This conversation is carried on until some sense of resolution is reached.15 The imagination is a very powerful tool for reconnecting with a person’s inner relationship with a deceased loved one. This connection takes place on many levels at once, making it a profoundly moving and transforming experience. This process often initiates a healing process that can transform the grief and pain of the treated person. This process would be very unlikely to occur within a context of therapy that is informed by the saying goodbye map, for such a paradigm inevitably closes down possibilities for working on what would appear to be a lost relationship. Utilizing the imagination in accordance with the saying hallo metaphor might serve as a powerful antidote to this. C. Use of Symbols, Photographs, and Shrines in Reconnection to the Deceased There is considerable potential in utilizing symbols, photographs and shrines to facilitate a saying hallo process in grief therapy. People who have had a significant loss may find new significance in possessions belonging to the deceased. People may use photo albums, mementos, household furnishings, and other possessions to define… their relationship to each other… These articles may also help in

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______________________________________________________________ the search for new meanings that will take the loss into account.16 A symbol or photograph, through its images, elicits and contains many memories that relate to the person or place being depicted in the photograph. In this way one can think of the symbol or photograph as a gateway for accessing and connecting to experiences, emotions and narratives that might have been pushed aside or buried. This process can be particularly useful in grief therapy in order to facilitate a reconnection with a lost relationship. Any ritual which incorporates the use of photographs or symbols related to the deceased (or to places and events connected to this person) will serve to increase the presence and availability of that person in terms of the inner relationship that the treated person has with the deceased. Symbols are often used as a means towards generating therapeutic change.17 In the context of the saying hallo metaphor there are many ways in which symbols can be used ritually to facilitate a reconnection to the deceased. A person might for example be asked to find, create, or buy something that will serve as a symbol for the deceased or for the client’s relationship with the deceased. This might take the form of a special watch or ring, a precious stone, a photograph of the deceased, a piece of the deceased’s clothing, a letter or card, etc. By carrying these symbols with him, the deceased is kept alive in the treated person’s mind. This serves to provide the person with a sense of connection to the deceased person, and to reduce the sense of loss and isolation that commonly accompany the death of a loved one. It often proves valuable to an individual to create a collage which encapsulates the individual’s relationship with the deceased individual. The collage can be created using significant photographs and any other items considered relevant by the individual such as theatre tickets, a copy of a marriage certificate, Valentine’s or special occasion cards, and similar items. The construction of such a collage inevitably initiates the saying hallo process by facilitating a reconnection to the memory of the deceased. A treated person might also wish to construct a shrine for the deceased. Such a shrine would be composed of objects and symbols that are personally meaningful to the treated person with regard to his relationship with the deceased person. The construction of such a shrine can be left to the wishes of the treated person. It might include photographs of the loved one, candles, flowers or anything else that would be significant to the person. The presence of the shrine serves to establish and maintain a sense of connection to the deceased which again serves as an antidote to the sense of loss caused by the parting of the beloved.

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______________________________________________________________ Interestingly, from the saying goodbye discourse, enshrinement is often frowned upon as a sign of mal-adaptation to the loss of the loved one. It is often interpreted as a sign that people are unable to “get over” the loss and say goodbye to the loved one. Yet, as was argued before, from a narrative perspective the idea that one necessarily has to say goodbye to a deceased person is questioned. In addition to utilizing rituals centring on symbols and photographs as an independent therapeutic strategy, it can also prove valuable to use this approach in combination with other techniques and strategies that are designed to facilitate a saying hallo process. For example, a photograph of the deceased might be used as a starting point for an image or remembering exercise, and the creation of a collage could accompany the writing of a letter to the deceased individual. This section could only provide a very basic overview of the utilization of symbols, photographs and shrines to facilitate a saying hallo process. Many other possibilities exist, and in actual practice the specific approach taken by the counsellor will have to be determined in accordance with the specific situation and requirements of the client. D. Making Time to Remember the Deceased with other People Another potentially effective strategy that might prove especially useful in helping a family cope with extended grief involves the setting aside of time together to remember the deceased person. The particular format of this strategy is best determined according to the specific context of the particular family, including considerations such as the ages of the members, the nature of the death, unresolved issues and so on. From a narrative approach reality is seen as being socially constructed. It follows from this that having several people participate in such a saying hallo endeavour would be a great aid towards the development of an alternative, preferred story surrounding the deceased person and his or her relationship with the living family members and friends. A story that was cogenerated with others will have a greater chance of survival than a story that was generated alone. Kübler-Ross echoes this general idea when she says that: If families can cry and talk together about the happy memories they share of the missed person, the real process of bereavement can be greatly enhanced . . . If relatives can go through the pages of a photograph book and share memories of places, vacations, incidents, and laugh and cry together, much can be done to… get through the mourning process without scars. 18

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______________________________________________________________ This technique can be combined with any of the other approaches suggested here. A family might for example use this “remembering” time to make up a collage together, or they might choose to visit the deceased’s grave together, an approach that will be discussed in later section. E. Rituals Rituals have been defined as ceremonial acts that utilize symbols and symbolic actions and that may be capable of multiple meanings and have been described as the most comprehensive and the most elegant of all the interventions. 19 Rituals are very versatile interventions, and as such can be utilized in a myriad of ways to facilitate, mark, or confirm a saying hallo process in therapy. This section examines some of the possible ways in which this might be accomplished. The Nature and Construction of Rituals The therapeutic scope of rituals is extremely diverse and varied, and as such it would be counterproductive to attempt to establish any definitive or restrictive rules for their construction and utilization. The exact nature of a ritual is best determined by the specific situation and the individual needs of the client. Saying hallo Rituals The saying hallo process described earlier can be facilitated and concretized by the use of rituals. In this regard, rituals can be devised in order to mark the re-establishment and re-opening of a previously closed relationship that the treated person had with a deceased person. Such a ritual would focus on establishing a sense of connection and a sense of presence with regard to the deceased individual who before might have been “buried too deep” for the treated person to connect with. This type of ritual would likely have a positive effect on the treated person’s sense of being cut off from and separated from the deceased beloved. The possibilities for creating such rituals are infinite, and the client’s specific situation and context should be the primary determining factor in developing any ritual. Visiting the Grave as Saying Hallo Ritual A potentially very useful ritual for facilitating a saying hallo process involves the client visiting the grave of the deceased. Although many people are naturally drawn to do this and this approach is sometimes used by counsellors, it is often done within the context of the saying goodbye discourse. That is, the intention for the visit to the gravesite is often that of assisting individuals to come to terms with the finality of their loss and to

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______________________________________________________________ move to a point of acceptance where they can say goodbye to their loved ones. However, from a saying hallo approach, the same ritual can be carried out in a fundamentally different manner with the purpose of facilitating the re-membering of the deceased person. The details of such a ritual can take many forms according to the unique situation and desires of the client. The treated person might simply choose to visit the gravesite on a daily, weekly, or monthly basis. Alternatively she might choose to visit it only when she feels the need to do so. During these visits she might hold a conversation with the deceased, perhaps sharing her thoughts and feelings, and saying what was unsaid before. (In this regard the process bears similarities to the technique of using the imagination to talk to the deceased). In addition, she might also wish to express and maintain her sense of connection by a ritual action such as putting flowers on the grave regularly. Many other possibilities exist to extend and adapt this ritual, and, as before, the treated person’s specific situation should be the determining factor in this regard. F. Completing Projects Initiated by the Deceased It is often the case that a deceased individual had been pursuing a valued goal or activity prior to his or her death, thereby leaving a particular desire, ambition or project uncompleted. Relatives or loved ones could take it upon themselves to complete this activity or fulfil an ambition initiated by the deceased. Any unfulfilled dreams, wishes, ambitions, or legacies related to the deceased could serve as basis for reconnecting with him or her. By engaging in such activities, the memory of the deceased is kept alive, and a sense of connectedness with the deceased is fostered. Such activities could likely serve as a constructive channel of action during a time when such individuals might feel overwhelmed by the loss they’ve experienced. Such activities could take on many different forms, such as having some of the deceased individual’s poems published, donating money to a particular cause or charity previously supported by him or her, continuing positive efforts by the deceased to support the environment or community, and so on. G. Dreams as Way to Say hallo Again After the death of a loved one, people often experience very vivid and lucid dreams in which the deceased person appears, and awake from these dreams feeling as if they really were with the person they had loved and lost. These dreams often feel more real to the dreamer than waking reality, and provide a strong sense of connection to the deceased. Gayle Delaney, a foremost contemporary dream researcher, makes the following observation about this type of dream:

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______________________________________________________________ Some very fortunate people dream of being reunited with their loved ones in a warm, powerfully real, unbelievably vivid way. They can awake from these dreams feeling as if they really were with the person they had loved and lost. These dreams don’t feel like normal dreams; the encounters feel somehow much more like waking reality, in fact, sometimes even more real than waking reality. 20 Mostly, these interactions are quite emotional experiences for the dreamer. Many people write these dreams off as nothing more than the ruminations of a grieving mind. While this may be true in some cases, it is believed that there are more to these dreams than mere rumination. Instead of rejecting such dreams offhand as inconsequential, or relegating them to the level of wishful thinking, it is suggested that they might be a valuable source for healing. Considering the degree of realness and emotional intensity of these dreams, it is easy to see their immense potential for assisting the person to say hallo again to their loved ones. It helps to sustain a sense of connection which acts as a powerful antidote to the often overwhelming sense of despair and loss that people commonly experience after the death of someone they treasured. The therapist can utilize these types of dreams in very powerful ways to facilitate the re-incorporation of a lost relationship into the life of a grieving person by validating these dreams and by encouraging the person to remember, honour, and record the dream in some meaningful way. Therapists might, for example, inquire into the “deceased-person dreams” of a person trapped in feelings of grief. By encouraging the person to discuss these dreams, they are invited to recount the experience more fully. This enhances the subjective realness of the dream experience and also powerfully contributes to the generation of an alternative account of the treated person’s life in which the deceased person is not lost forever, but present in many ways. Often a therapist needs to do little more than this, for the very fact that these dreams often feel so real and are so emotionally intense and reassuring results in a situation where treated persons usually have no difficulty accepting the value of these dreams. The therapist’s role in this regard is therefore primarily one of validating the experience and acting as an audience for the full telling of the dream experience. Alternatively, the dream might be celebrated in some way, or built into a ritual. These approaches have in common the intention to enhance the subjective weight of the dream experience and to contribute to its survival as a sustaining and comforting force in the client’s life. The client might wish to find or create a symbol that encapsulates this dream experience and carry it with him or place it on his desk, etc.

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______________________________________________________________ The following dream was recounted by one of the author’s treated persons and reflects the power inherent in dreams to facilitate a reconnection with a deceased individual: One night, a few weeks after my grandmother’s death, I had a dream in which my grandmother came to me. She told me that she was ok and that she was happy where she was now. She also reassured me that nothing that happened was my fault. I had secretly been feeling guilty about certain things that I felt I should have done but neglected to do. She told me that the things I did do for her meant a lot more than the little things I might not have done right. This dream brought me a great deal of reassurance and helped me cope much better with the grief and sadness over my grandmother’s death. I even told the dream to my father and it helped him too. We both felt better because of the dream. I am not absolutely sure whether it was really my grandmother in the dream or not. I think it was, but I am not totally sure. But the important thing is that it helped me to feel better about the whole thing. By inquiring into the dream and providing time and space for the treated person to fully recount his dream, the experience of the dream was reinforced and rendered more significant. Through the use of reflective questions that required him to think about the dream experience and how it might have affected his perception of his relationship with his grandmother generally as well as with regard to unresolved issues, further reflexivity was instigated that stimulated a positive re-authoring of the relationship through the saying hallo process. This case study also suggests that the value that such dreams have in assisting with the resolution of grief might be extended beyond the dreamer. Through sharing the dream with other individuals who may also be grieving over the lost loved one, the potential therapeutic effect of the dream can be extended to facilitate a saying hallo process in those individuals with whom the dream is shared. Dreams of the deceased have an immense, yet mostly underutilized potential for assisting clients in dealing with their grief. Such dreams can powerfully instigate a saying hallo process in therapy which can be built upon by other methods in order to aid the client in reincorporating the lost relationship back into his or her life. Ignoring such dreams would be to unnecessarily deprive the client of a valuable connection with the deceased, and a powerful opportunity for healing.

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______________________________________________________________ 4.

Concluding Remarks In this chapter it was suggested that, at least in some cases where approaches to grief counselling oriented by the saying goodbye map have failed, alternative strategies founded upon the saying hallo map of therapy might be fruitfully employed to break this impasse and engender positive therapeutic change. It is hoped that a serious consideration of these alternate strategies might serve to open up new possibilities in grief counselling. However, in the final analysis, each person experiences the loss of a loved one in his or her own individual way. Consequently, there can be no single technique, no set formula, for dealing with issues related to death and dying. Even the saying hallo metaphor should be seen as only one possible strategy amongst many others. The specific context of the individual client should be the determining factor in the choice of therapeutic approach. Certainly, we need to be conversant with various therapeutic strategies related to grief counselling, but perhaps even more importantly, we need to be sensitive to our clients as individuals, and tailor our therapeutic endeavours to fit in with that individuality.

Notes 1

White, Michael, “Saying Hullo Again: The Incorporation of the Lost Relationship in the Resolution of Grief,” Dulwich Centre Newsletter, 2, 1988, 29-36. 2 It is not suggested that this is the only Western discourse on death; there are undoubtedly many others. Yet the saying goodbye discourse is arguably one of the most dominant discourses that permeate current thinking, and, as will be shown, has many potentially insidious implications for grief counselling. 3 White, ibid., 29-36 4 Klass, Dennis, Phyllis R. Silverman and Steven Nickman (eds.), Continuing Bonds: New Understandings of Grief (Washington, D.C.: Taylor & Francis, 1996). 5 White, ibid. 29-36 6 White, ibid., 29 7 White, Michael and David Epston, Narrative Means to Therapeutic Ends (New York: W.W. Norton & Co., 1990), 33-34. 8 White and Epston, ibid. 33-34 9 Kotze, Dirk, Dear Father: Writing Letters as a Means of Concluding Conversations Cut Off by Death. Amsterdam. Notes taken at paper given at 3rd IFTA conference, May 1993.

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______________________________________________________________ 10

Kennedy, Alexandra, Your loved one lives on within you (Berkley: New York: Norton, 1997), 71. 11 Ibid., 77 12 Ibid., 17-18 13 Ibid., 10-11 14 Ibid., 108 15 Glouberman, D., Life Choices, Life Changes: Developing Your Personal Vision with Imagework (London: Thorsons), 106 16 Bergmann, Frank, Exploring Death and Loss: A Social Constructionist Perspective (Unpublished MA dissertation, Johannesburg: RAU, 1999), 3637 17 Freedman, Jill and Gene Combs, Symbol, Story, and Ceremony: Using Metaphor in Individual and Family Therapy (New York: Norton, 1990), 54. 18 Kübler-Ross, Elizabeth, On Life after Death (California: Celestial Arts, 1991), 74. 19 Imber-Black, Evan, “Idiosyncratic Life Cycle Transitions and Therapeutic Rituals,” in The Changing Family Life Cycle: A Framework for Family Therapy, Betty Carter and Monica McGoldrick (eds.), (Massachusetts: Allyn & Bacon, 1989), 153-154 20 Delaney, Gayle, In Your Dreams: Falling, Flying, and other Dream Themes (San Francisco: Harper Collins Publishers, 1997), 97.

References Bergmann, Frank, Exploring Death and Loss: A Social Constructionist Perspective (Unpublished MA dissertation, Johannesburg: RAU, 1999). Delaney, Gayle, In Your Dreams: Falling, Flying, and other Dream Themes (San Francisco: Harper Collins Publishers, 1997). Freedman, Jill and Gene Combs, Symbol, Story, and Ceremony: Using Metaphor in Individual and Family Therapy (New York: Norton, 1990). Glouberman, D., Life Choices, Life Changes: Developing Your Personal Vision with Imagework (London: Thorsons). Imber-Black, Evan, “Idiosyncratic Life Cycle Transitions and Therapeutic Rituals,” in The Changing Family Life Cycle: A Framework for Family

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______________________________________________________________ Therapy, Betty Carter and Monica McGoldrick (eds.), (Massachusetts: Allyn & Bacon, 1989), 153-154 Kennedy, Alexandra, Your loved one lives on within you (Berkley: New York: Norton, 1997). Klass, Dennis, Phyllis R. Silverman and Steven Nickman (eds.), Continuing Bonds: New Understandings of Grief (Washington, D.C.: Taylor & Francis, 1996). Kotze, Dirk, Dear Father: Writing Letters as a Means of Concluding Conversations Cut Off by Death. Amsterdam. Notes taken at paper given at 3rd IFTA conference, May 1993. Kübler-Ross, Elizabeth, On Life after Death (California: Celestial Arts, 1991). White, Michael, “Saying Hullo Again: The Incorporation of the Lost Relationship in the Resolution of Grief,” Dulwich Centre Newsletter, 2, 1988, 29-36. White, Michael and David Epston, Narrative Means to Therapeutic Ends (New York: W.W. Norton & Co., 1990).

Remembering the Dead: Roadside Memorials in Ireland Una MacConville and Regina McQuillan Abstract Roadside memorials erected in memory of people who have died suddenly and tragically, are a familiar site in many countries. They may appear to be a contemporary trend; however, roadside memorials are part of earlier traditions of death-markers in open places. These memorials are testimony to the importance of the place of death and to the continuing memory of the deceased. They can also serve as a warning to other road users of the physical dangers of the road. The historical and contemporary contexts of these memorials, in Ireland and in other societies, are discussed. In some societies there are increasing official restrictions on the erection of these memorials reflecting a potential conflict between official and individual expression. This study examines the memorials on one major road in Ireland where it was found that the erection and maintenance of these memorials are facilitated, reflecting a cultural emphasis of remembrance of the dead. Keywords: Roadside memorials, remembrance, bereavement, sacred space, tradition, culture ***** Introduction Floral tributes, marking the site of fatal accidents are a familiar sight on many roadsides. These tributes are also seen at sites of other sudden or shocking deaths and have been termed ‘spontaneous shrines’ by some commentators. This practice, increasingly common in recent years, has become ‘visual shorthand’ for sudden or tragic death in media coverage. Spontaneous shrines take the form of flowers, candles and souvenirs such as toys and by their nature are very visible but also temporary. Sometimes less visible, but more enduring are other memorials which range from simple wooden or metal crosses, to plaques and, especially in Ireland, to elaborate memorial architecture similar to that found in graveyards. These roadside memorials are now receiving attention from sociologists, historians, folklorists and other scholars. They raise interesting questions such as why people erect a memorial to individuals in the very public space of the side of the road. Are they a uniquely individual response to loss or have they a common material form? Are they, as some commentators suggest, a way for people to find their own ‘sacred space’, outside of traditional religious practice and a sign of individual authority 1.

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______________________________________________________________ rather than a reliance on the authority or the ritual practices of organised religion? Can these memorials be seen as some form of liminal space, between the living and the dead? This study considers the historical and contemporary contexts of roadside memorials and examines the variety of roadside memorials on one major route from the east to the north-west of Ireland. 2.

Historical Background Roadside memorials to mark the site of road accidents may appear to be a contemporary trend however roadside ‘death markers’ are part of a long tradition, in Ireland and elsewhere in the world, and have a variety of forms. A variety of memorials have been erected from the late 13th century in England. ‘Eleanor Crosses’ marked the resting places of Queen Eleanor’s funeral procession on its journey in 1290, from Lincoln to Westminster Abbey in London. Few of these thirteenth century crosses remain. The most spectacular of these, at Charing Cross in London, was demolished in the 17th century. In Wales, it was customary during the funeral procession to say prayers at every intersection and in the Scottish highlands, mourners added stones to cairns - a pile of stones - at each stop of the funeral procession.1 Richardson notes that in Britain it was the custom to cut a cross into the roadside turf in order to purge an accident or crime scene. 2 In New Mexico and in parts of the United States, contemporary roadside memorials have been linked to the Descansos tradition. Descansos are either places where people are buried or where they rest with the corpse which has been taken for burial. These sites were places where family members and other travellers would stop and pray. However, this practice had unfortunate consequences as travellers were sometimes ambushed at these sites when they stopped to pray which led to the practice being banned by the Governor of New Mexico in the 1700s.3 Roadside memorials have also been documented in many other countries such as Greece, France, Spain, Canada and north and south America. In Greece, in addition to roadside memorials that mark the site of a sudden death, a form of memorial known as proskynetári may indicate an individual’s escape from death. This form of memorial is erected in part as thanksgiving but also as a warning to other road users. 4 In Ireland contemporary roadside memorials, many with the names of the individuals and date of death are a link with earlier traditions that marked the site of a sudden death or of funeral resting places. It was common practice to mark a roadside death by building a cairn, similar to the Scottish tradition. Some historians and archaeologists consider that these cairns mark the site of resting places for funerals “representing a physical manifestation of the pauses at particular boundaries or a formalisation of the rests necessary

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______________________________________________________________ when coffins were carried to the graveyard on men’s shoulders”.5 However, information gathered by the Irish Folklore Commission in the 1930’s suggest that these cairns also mark the place of a sudden death and that it was customary for passers-by to add a stone to the heap and say a prayer. Respondents to the Irish Folklore Commission questionnaire described cairns, or heaps of stones, which marked the place of death of people in road traffic accidents or in the ‘Tan War’ (the War of Independence 1919–1921) and how passers-by often added stones to the cairns. The building of wayside cairns would appear to have been commonplace as there are many expressions in the Irish language that refer to the practice. For example, one way of saying that you did another a good turn is “Chuir mé cloch ina leachta” (I put a stone on his cairn), to describe another’s ill-will one can say “Tá sé comh h-olc sin a’s nach gcuirfeadh sé cloch ann mo leachta” (He is so ill-disposed to me he would not put a stone on my cairn)6. One respondent to the Irish Folklore Commission questionnaire described cairns and other forms of wayside death markers; Always where people are killed or are found dead on the roadside, there are crosses erected there, sometimes trees planted or perhaps a heap of stones, and if it be a heap of stones, people who pass by take a little pebble or stone of some description and leave it as the place as they pass. They always say a prayer as they pass for the repose of the soul whose remains were first got at that particular place. 7 The custom of marking a death-place in the open by a stone-heap to which each passer-by added a stone, was widely practised in Ireland, although it is now extinct. The popular explanation of these memorials is that of a memorial and a reminder to pray for the dead. Adding a stone to the heap is regarded as being of benefit to the dead person and is accompanied by a prayer. This interpretation is obviously influenced by Catholic beliefs in Purgatory and in prayers for the dead.8 However, there is a further aspect to these memorials as it would appear that the place of death retained many eerie associations. Many respondents to the Irish Folklore Commission also made reference to a fear of ghosts as a reason for placing stones on the cairns - “there is no danger that the ghost of the person who is gone will come on the person who puts a stone on the cairn”9. Apparitions and other ghostly phenomena, such as wailing were also connected to the death place. NicNeill argues that adding a stone to the heap can be also understood in terms some form of propitiatory offering to a dangerous power and the practice is itself based on earlier beliefs. However, in broader terms, NicNeill contends that universally, attempts are made to normalise death through a framework of established customs. This is only possible when death occurs inside expected

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______________________________________________________________ limits and when death strikes outside these limits, such as sudden or tragic deaths, additional efforts are needed to allay the terror and this is why deathplaces in the open have such a powerful hold on the imagination. Other forms of memorials in open-places include, in some parts of the country, the planting of a death-place tree or bush, known in the areas as ‘Monument Tree or Monument Bush’10. Wayside crosses were also erected from the seventeenth century, mainly in the eastern part of the country, and other forms of roadside markers including crosses cut into the grass banks or crosses painted on the road or on trees, may also have similar functions marking the place of death or the resting place of funerals. One example of a stone wayside cross from the early seventeenth century, bears an inscription to the deceased members of the O’Toole family but also acts as a reminder to passers-by of their own mortality by urging prayers for the deceased- “FOR AS YOU ARE SOE WEARE WEE AND AS {WEE AR} E SOE SHALL YOU {BEE}”11 This inscription reflects the dual purpose of these memorials - remembrance and warning - although this form of warning or reminder is of mortality and not necessarily of physical danger. 12 3.

Contemporary Contexts The ‘spontaneous shrine’ has become an easily recognisable sign of a sudden or tragic death and is a common sight on many roads and in response to large-scale disasters or tragedies. These shrines are considered not only an appropriate but also an expected response to tragedy. Shrines express attempts to make a catastrophe more manageable; the creation of a shrine, the placing of flowers and candles can give people a sense of purpose.13 These shrines “emerge quickly, and often within a few hours of an event” and stay in place throughout the liminal period between death and burial; after the funeral, when shrines are removed the sacred space returns to be a secular space and the graveyard becomes the place to leave flowers and other mementoes.14 However, in many societies more permanent memorials are placed. It is these more permanent contemporary memorials that have now become a focus of study for historians, sociologists, folklorists and other scholars. Not all ‘spontaneous shrines’ become permanent memorials but it is clear from the historical record that roadside memorials are a continuance of traditional customs, although in modified material form. Interviews with family members and friends of the deceased in a number of contemporary studies suggest that these roadside memorials have two main purposes; that of remembrance and that of warning. 15 16 17 A. Memorials as Remembrance Roadside memorials can be deeply personal sites of remembrance and can be a continuing connection with the deceased. Phenomenological

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______________________________________________________________ experiences in bereavement include a continuing relationship with the deceased. These aspects of bereavement are reflected in contemporary theories of bereavement such as ‘continuing bonds’ in contrast to earlier models that sought to sever bonds with the deceased and encouraged the bereaved to ‘move on’.18 Some recent studies have documented the views of families and friends of the deceased for whom the place of death and the site of the memorial had become the location for a continuing dialogue with the dead 19. One family member speaking on an Australian radio programme explained that the roadside memorial marked “where he lost his life and where he will always be… I won’t go out to the cemetery because that’s not where he is…he is here at the cross”.20 Grider has argued that ‘spontaneous shrines’ stay in place for the liminal period between death and burial, becoming a temporary ‘sacred space’ and returning to be a secular space once burial has taken place,21 however, for many of these family members, it would appear that the place of death remains as a liminal space, between the living and the dead, possibly where the living may feel closest to the dead. The memorials may become a sacred place, a place of pilgrimage, for months or years, being visited and maintained. Memorials can be abandoned, if there are no survivors to maintain them, or if the dead are re-incorporated into the social world of the bereaved and the place of death diminishes in importance. Folklorist George Monger has described the action of erecting and maintaining roadside memorials as a “private and individual pilgrimage”.22 Turner and Turner have argued that pilgrimage creates an environment in which meaning is created and recreated and that pilgrimage evokes an “application of the known to the unknown”.23 Roadside memorials may also be a way for the bereaved to make sense of their loss, to put order on the disorder of a sudden and unexpected death. Death disrupts a family system; sudden deaths, traffic deaths, untimely deaths - deaths of young people cause greater disruption in a family system. The need to create order around this disorder may also lead to the erection of roadside memorials. Everett states roadside memorials are only erected for those who die a sudden death on the road and therefore for those who “die badly”.24 A “bad death” can be considered as one in which there is disorder, roadside memorials may have a transformative function by putting some kind of order on these types of death and transforming a ‘bad death’ into a ‘good death’. The transformative function of these memorials has led some commentators to refer to roadside memorials as a way of creating a sacred space, thus giving it more meaning. Creating a roadside memorial, having rituals such as lighting candles and placing flowers on special occasions can provide an alternate sacred or spiritual space. Clarke and Frauzmann have argued that the use of roadside memorials in parts of Australia correlates with

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______________________________________________________________ a decrease in church attendance.25 Individuals may not feel that the religious rituals are meaningful and roadside memorials may represent more meaningful ways than those provided by institutional religion to “express our spiritual selves when we are most vulnerable”.26 Roadside memorials have attracted considerable interest in Australia where these memorials frequently mark the place of death of young men in road traffic accidents. These memorials can be very individualistic, utilising the white cross as part of the traditional roadside memorial but frequently incorporating individual artefacts such as surf boards, bicycles or basketball hoops or incorporating some part of the vehicle wreckage.27 Peter Read, a professor of cross-cultural studies, has suggested that the site of death carries many powerful energies for some time and the response to these roadside memorials in Australia lies in aboriginal concepts of the importance of place thus lending an acceptance to memorialise actual sites where things have occurred and where spiritual energies may reside.28 B. Memorials as Warnings Roadside memorials and ‘spontaneous shrines’ also operate as an effective warning for road users of the physical dangers of the road. A while ago, a front cover of the Sunday Times magazine featured a roadside ‘spontaneous shrine’ to illustrate an article on the dangers of the A59 in England.29 A UK charity, Roadpeace, dedicated to supporting bereaved and injured crash victims was founded in February 1992.30 Roadpeace developed a programme of providing standardised memorials to be placed by friends or family of someone killed on the road. This programme, ‘Remember Me’, has erected over 2000 markers since its launch on 31st of August 2003. These markers are black A4 size signs depicting a red anemone and are intended to be noticeable, non-denominational reminders of the dangers on the roads. In the USA, Mothers Against Drunk Driving (MADD) have erected roadside memorials to those who have died, especially as a result of drink driving. MADD initially erected crosses, however this religious symbolism proved controversial in some states. The Texas Department of Transportation has, in conjunction with MADD, authorised the erection of alternative types of markers. Families involved in the erection of roadside memorials saw part of the purpose was educating the public about the dangers of this road and the memorials serve as a warning to other road users.31 In Australia, a radio documentary, ‘White Lines, White Crosses’ interviewed a number of individuals who had erected memorials to friends or family who had died on the road. For many of the individuals involved, the memorial was a place for connecting with the person who had died, but for some people the memorial was also there as a warning to others and they wanted the memorials to be a reminder to people to drive safely.

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______________________________________________________________ 4.

Attitudes to Roadside Memorials Roadside memorials can act as a warning to road users however the erection of these memorials is not universally acceptable. Concerns are expressed that the memorials serve as a distraction on the road thus becoming a further danger. There is opposition to the material form of these memorials and many statutory authorities object to the use of the public highway for personal use and efforts are made to ban or restrict the erection of memorials. Many roadside memorials take the form of the traditional Christian symbol of the cross. Crosses have also become universal as a symbol of death. The earlier tradition of roadside markers, as places of death, or of resting places of funerals, also implied that these sites were places to pray and to remember the dead. In the US organisations such as American Atheists and Americans United for the Separation of Church and State raised objections to the use of religious symbols on the memorials.32 The original cross memorials erected by MADD have been modified reflecting the importance of the separation of Church and State in the US. This may, in future, lead some states to permit a variety of memorials, including crosses, or to allow non-religious memorials only. There are differing attitudes to memorials across US states. In some states they are completely banned, in others such as Alaska and West Virginia, memorials are facilitated if they follow particular procedures, including guidelines about size and position.33 Both state policies are called “We Respect Your Feelings” and information leaflets and application forms are available. In other States, non-denominational standard markers are provided by the state, sometimes at a charge, sometimes free. Occasionally these markers may contain a message about drinking and driving.34 In states where markers are considered illegal, they are removed by the authorities. In 2001 a Colorado court took the view that the removal of roadside crosses by a member of the public was not illegal as the roadside memorials, being unauthorised, were “litter” and not “venerated objects”.35 In the UK, there appears to be a growing official opposition to the erection of memorials. A recent newspaper article has reported that at least four local authorities have told bereaved families not to lay flowers at the site of a fatal crash after a predetermined period of mourning, sometimes as little as two weeks, and they are seeking a ban on permanent roadside memorials.36 These restrictions are for “health and safety reasons” and authorities are claiming they are acting on foot of advice from the police who fear the tributes, many near dangerous roads, could distract motorists. These restrictions have been considered “crass and insensitive” by bereaved families and road safety campaigners, some of whom feel these memorials are being removed in order not to draw attention to the death toll on certain roads.

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______________________________________________________________ In Ireland there appears to be a reversal of the situation found elsewhere. Permanent memorials have been erected in memory of people who have died in road traffic accidents, by suicide, by murder and especially in South West Ireland, those who have died in the War of Independence and the Civil War of the early twentieth century. Roadside memorials are not illegal and in many cases the erection of memorials is facilitated by local authorities. Roadside shrines and memorials, less than two meters high, are exempt from planning requirements subject to not causing a hazard.37 The contrast in attitudes to roadside memorials from different authorities may also reflect the different views that are held about death, dying and remembering the dead. Ireland has a very strong culture of funeral rites and remembrance of the dead that appears to be recognised and facilitated by the statutory authorities. 5.

Roadside Memorials on the N4 in Ireland In order to examine examples of roadside memorials in Ireland, we focussed on memorials on the N4, a 130 mile stretch of road, between Dublin, the capital city, and Sligo, in the North West. We identified existing roadside memorials by accessing a website: http://homepage.eircom.net/~arantsli/index.htm. This website is maintained by Jerry Cremins and contains over five hundred memorials, mainly from road traffic accidents although there is a separate section on the site where roadside memorials to people who have died in other circumstances are recorded. We also travelled this route on a number of occasions. At the time of this study in 2004 there were 46 permanent memorials. There were, on different occasions some temporary memorials or spontaneous shrines. One spontaneous shrine was replaced by a permanent memorial after a few months. Of the 46 memorials, 6 were anonymous, and one was a general memorial for famine victims. The 39 memorials with names commemorated the deaths of 51 people, 37 male, 14 female. In some cases the age of those who had died was recorded, ranging from 6 to 65 years, the average being 24. The material form of the roadside memorials on this route varied from simple wooden or metal crosses, some with small metal plaques, to very elaborate memorial architecture, similar to those erected in graveyards. The earliest memorial relating to a road traffic accident on this route is a simple stone cross erected in 1936. Some memorials took the form of stone tubs for flowers with a plaque. There were also stone crosses reminiscent of earlier wayside crosses and in one location a very large memorial, over six feet in height, with a representation of a show-band singer - Tom Dunphy - who was

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______________________________________________________________ killed in an accident in 1975. Roadside memorials often have personal mementos; the memorial to Kenny Curtis near Lucan, a Dublin suburb, features a plaque with an inscription, planted flowers in a flower box, a small metal Celtic cross, a larger stone angel, a small decorated surround with blue and white decorative stones, and a small Winnie the Pooh toy. Only one memorial which depicted a motor bike engraved on a marble plaque indicated the possible cause of death.

Memorial to Tom Dunphy near Drumsna, Co. Leitrim

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______________________________________________________________ Not all of the roadside memorials on this route related to traffic accidents. One memorial was for victims of the famine of 1845–1847. Two others were political - one commemorated the place of death of Padraig MacGiolla, who was shot by “British Crowned Forces” in the village of Drumsna in 1921 (during the War of Independence). Another memorial did not mark the place of death, but a place associated with Martin Hurson, who died on hunger strike in Long Kesh in Northern Ireland in 1981. He was commemorated in Edgeworthstown in Co. Longford, in the constituency for which he was an unsuccessful candidate for election to the Dáil (The Irish Parliament) while on hunger strike. This memorial was erected twenty years after his death.

Memorial to Padraig McGiolla, who died in the War of Independence In the early 1990s, local people were concerned about the hazards on stretches of this road and erected simple white wooden crosses marking the sites of fatal accidents from Kilcock to Enfield, a distance of approximately eight miles, as part of a campaign to highlight the danger of

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______________________________________________________________ the road and to exert pressure for road improvements. This campaign lasted for a number of years with increasing numbers of crosses placed until the road was upgraded. On the N4 there were a number of roadside memorials which had been moved during this upgrading work. These included the memorials of Jackie Farragher and Bernadette Keane which were moved but subsequently re-incorporated into new embankments along the upgraded roads.

A memorial that was moved during road upgrading near Lucan, Co. Dublin Over the number of months that we undertook this project we observed that one large memorial, erected to five people killed in 1951 close to the midland town of Mullingar, Co. Westmeath, was clearly in the line of new road developments. On our second trip the memorial had been removed as we had expected given the layout of the new road. We spoke with the site engineer. The engineer had contacted, through local councillors, the surviving members of the families of those who had died and on consultation

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______________________________________________________________ with the family members was planning to re-erect the roadside cross when the works were completed. We also observed other signs of respect for these roadside memorials on our frequent travels on the road. For example, when grass was mowed along verges the grass was also cut up to the roadside memorial to make it more visible to passers-by.

Road works have necessitated the removal of this memorial which will be re-erected when the road is finished

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______________________________________________________________ It is clear from respondents to the Irish Folklore Commission documented earlier that praying for the dead at these sites was an important cultural practice. While the practice of building stone-heaps or cairns no longer exists, remembrance of, and prayers for the dead, are part of Catholic practice and belief. A very large percentage of Irish people are Roman Catholics although the most recent census figures in 2002 show a small decline - the number of Roman Catholics in the population fell from 91.6% in 1991 to 88.4% in 2002.38 In spite of this small decline, Ireland remains a strongly Catholic country in terms of cultural practice. These memorials are visible reminders of a death and can serve as visible prompts to pray for the dead. Many of the memorials have exhortations to pray for the dead such as “Pray for the souls” of the five people who died near Mullingar; “Please pray for the repose of the soul” on the plaque for Angela Stenson Reynolds, who died in 1999 and “Mary Immaculate intercede on her behalf”, on the memorial to Maria Frances Cairns who died in 1983. Memorials also recognise an after-life, which is important for some mourners. A memorial to Marie Whelan and Mary Faughnan, from 2001 has the inscription “Ar dheis De go raibh a n-anamadra” (May their souls be at God’s right hand). A poignant memorial to Brian Kane includes the inscription “Asleep with Jesus, until we meet again”, the memorial was erected by his “loving mother, Bridget”. Memorials also emphasise the connection between the living and the dead. The acts of erecting the memorials demonstrate the effort and commitment of the bereaved but the inscriptions also emphasise this connection: “Erected by her heartbroken family” on the memorial of Maria Frances Cairns; “Missed and loved by everyone” inscribed on David Murphy’s memorial near Kilcock. Patrick Keane’s memorial states: “Always remembered by his wife, sons and daughters”. These memorials at the roadside can also be sacred places to visit. While photographing the memorial to John Nolan, a young man killed in a road accident about one hundred miles from his home, a woman who lives near-by spoke to us. She related that she often saw his mother stop at the site; the memorial featured many different laminated cards, including Mass cards (cards indicating that a Catholic mass has been offered for the deceased), birthday cards, and cards marking the anniversary of the death. John died in 2000. The memorials usually refer to the death of someone at the place where the memorial is erected. However, two memorials on the N4 mark where an individual was fatally injured. Two large Celtic crosses mark the place of death of three young men, two who died at the site, Paddy Kiely and Paddy O’Reilly, and a third, William Lewis Reilly, who died four days later on 4th December, 2001. The second cross not only marks a death, but

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______________________________________________________________ describes the dying process, the effect on the family and the ongoing links between the dead and the bereaved: “We sat beside your bedside, our hearts were crushed and sore, we did our duty to the end, ‘til we could do no more. In tears we watched you sinking, we watched you fade away, and though our hearts were breaking, we knew you could not stay. You left behind some aching hearts, that loved you most sincere, we never shall and never will forget. We love you Lewis”.

Two crosses to three young men who died

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______________________________________________________________ In Ireland, while attachment to organised religion has slightly declined, the decline has been moderate by European standards and Ireland has levels of formal religious adherence that are well above those of other European countries.39 Religious funerals, attended by large numbers of people, play an important part in social and cultural life. In contrast to the views expressed by some Australian commentators regarding roadside memorials being an alternative ritual, roadside memorials in Ireland appear to be in addition to, rather than instead of, religious services and memorial architecture in graveyards. The memorial to Brian Kane, at the roadside, is an elaborate headstone with photographs, very similar to a cemetery headstone. We also visited his grave at a local cemetery and found that his headstone was elaborate, featuring a different photograph and plaques and artificial flowers were on the grave.

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______________________________________________________________

An elaborate memorial complemented by elaborate grave decoration Not all roadside memorials are maintained; some such as wooden crosses with brass plaques cannot last more than a year or two, and one of these memorials deteriorated over the time of our study project, losing its

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______________________________________________________________ plaque. Memorials may be neglected if they are no longer necessary as part of the grieving process, if the family live a long way from the place of death or if there is no surviving family. However, one memorial, a delicate metal cross, erected to Olive Boland who died on 9th August 1949, aged 9 years, displayed fresh flowers after her 55th anniversary. This memorial is a continuing place of remembrance and a poignant reminder of the enduring sense of loss experienced by those left behind.

Olive Boland, remembered 55 years after her death

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______________________________________________________________ 6.

Conclusion Roadside memorials are fascinating cultural artefacts providing insight into individual and societal responses to death. It is clear that contemporary roadside memorials are part on an earlier practice in many parts of the world. The changes and modifications of these memorials and associated rituals are indicative of their continued relevance and importance. The tensions between official and individual expression, exemplified by the increasing restrictions on these memorials in some societies, illustrate wider social issues. These memorials are a physical reminder of sudden and unexpected death but more importantly a physical testimony to the deep and often continuing sense of loss experienced by families and friends.

Notes 1

Everett 2002, 19 Richardson 1993 3 Arrellano 1986, 42 4 Everett 2002, 20 5 Gosling 1993 6 NicNeill 1948, 50 7 Irish Folklore Commission, Manuscript 555, cited in NicNeill 1948 8 NicNeill 1948, 61 9 Irish Folklore Commission, Manuscript 653, cited in NicNeill 1948 10 NicNeill 1948, 62 11 Grogan and Kilfeather 1997 12 MacConville and McQuillan 2005 13 Grider 2001 14 Op. cit., 2 15 Hartig and Dunn 1998 16 Everett 2002 17 Excell 2004 18 Klass et al 1996 19 .Everett 2002 20 ABC Australia, Dec 7 2003 21 Grider 2001 22 Monger 1997 23 Turner and Turner 1978 24 Everett 2002, 20 25 Clarke and Frauzmann 2002 2.

26

Op. cit, 7

27

Varcoe 2003

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______________________________________________________________ 28

Read 2003 Sunday Times, September 26, 2004 30 www.roadpeace.org 31 Everett 2002, 104–7 32 www.crosswalk.com/news/religiontoday/1227321.html 33 www.wvdot.com/3_roadways/3d11a1_memorials.htm 34 Shaffrey 2002 35 Barker 2001 36 Gadher 2004 37 Fagan 2004 38 Central Statistics Office 2003, Dublin. www.cso.ie/census/documents/vol12_entire.pdf 39 Fahey et al 2005 29

Bibliography Arrellano, E.. “Descansos”, New Mexico Magazine, February 1986. 42–4. Barker, D., ‘Colorado court rules roadside cross ‘litter’ not ‘venerated object’, Freethought Today. 2001. 11 May 2005. <www.ffrf.org/fttoday/2001/junejuly01/colorado.html>. Central Statistics Office (2003) Principal demographic results. Dublin. Stationery Office. Clark, J. and Franzmann, M., “Roadside memorials”, Pointers Journal of the Christian Research Association. September 2002: 21–3. Everett, H., “Roadside crosses in contemporary memorial culture”. Texas University Press, Austin, 2002. Excell, G., “Roadside memorials in the UK”, Unpublished MA thesis, University of Reading, 2004 Fagan, K., “What roadside shrines say to passing motorists”, The Irish Times, MotorNews, 8 December 2004 Fahey, T. Hayes, B. and Sinnott, R., “Conflict and consensus: a study of values and attitudes in the Republic of Ireland and Northern Ireland.” Institute of Public Administration, Dublin,.2005.

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______________________________________________________________ Gadher, D., “Councils ban roadside shrines to crash victims”. The Sunday Times, 24 October 2004: p.5 Gosling, P., “The archaeological inventory of co Galway”. Volume 1: West Galway., The Stationary Office, Dublin, 1993. Grider, S., “Spontaneous shrines: a modern response to tragedy and disaster”, New Directions in Folklore. 2001. Grogan, E. and Kilfeather, A., “The archaeological inventory of co Wicklow”. The Stationary Office, Dublin. 1997. Hartig, K. and Dunn, K., “Roadside memorials: Interpreting new deathscapes in Newcastle, New South Wales”. Australian Geographical Studies, 36: (1998) 5–20. Klass, D., Silverman, P. and Nickman, S., “Continuing bonds: New understandings of grief.” Taylor and Francis, Philadelphia, PA. 1996. MacConville, U. and McQuillan, R., “Continuing the tradition: Roadside memorials in Ireland”. Archaeology Ireland 19:1, (2005) 26–30. Monger, G., “Modern wayside shrine”, Folklore, 108, (1997) 113–4. NicNeill, M., ‘Wayside death cairns in Ireland’, Béaloideas, The Journal of the Folklore of Ireland Society, IML XVI (1948) 49–63. Read, P. “White lines, white crosses”. ABC Australia 7 December 2003 <www.abc.net.au/rn/relig/enc/stories/s1000854.htm> Richardson, R., “Death’s door: thresholds and boundaries in British funeral customs, in Boundaries and thresholds: Papers from a Colloquium of The Katherine Briggs Club”, edited by Hilda Ellis Davidson, 91– 102, Woodchester, Thimble Press. 1993. Shaffrey, T. “Are highway memorials treasured memorials or traffic hazards?”. The Dallas Morning News, 30 April 2002. Turner, V. and Turner, E. “Image and pilgrimage in Christian culture: Anthropological perspectives”. New York, Columbia Press. 1978.

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______________________________________________________________ Varcoe, L. ‘White lines, white crosses’. ABC Australia 7 December 2003. <www.abc.net.au/rn/relig/enc/stories/s1000854.htm.>

“Untitled” (Queer Mourning and the Art of Felix Gonzalez-Torres) Emily Boone Hagenmaier Why should our bodies end at the skin, or include at best other beings encapsulated by skin?1 —Donna Haraway Abstract Many of the art installations of Felix Gonzalez-Torres (1957-1996) either directly or indirectly allude to the illness and loss of his lover and friend, Ross Laycock, to AIDS-related causes in 1991. And yet, amidst the personal and collective losses of the AIDS epidemic, Gonzalez-Torres’ art conveys a powerful sense of hope, joy, rejuvenation, and generosity. Against the expectation that grief might dominate or impede artistic production, Felix Gonzalez-Torres’ creations suggest a way of addressing loss that is hopeful instead of destructive, communal rather than privatized, and fluid instead of stagnant. In my chapter, I argue that Gonzales-Torres’ art provides an alternative to dominant, normative understandings of grieving. In Sigmund Freud’s 1917 essay “Mourning and Melancholia,” melancholia is described as a pathological grieving without end. However, in the artwork of GonzalezTorres, rather than a solely destructive force, melancholia allows for a continuous, fluid engagement with loss and with what remains after loss. In contrast to Freud’s 1917 discussion of bereavement, the art of GonzalezTorres does not insist upon letting go of a loss in order to overcome grief. The artist posits that the memory of people or events lost continues to affect the present and offers hope for the future. With its insistence on a collaborative spectator and its suggestion that a loss continues to impact the present in hopeful ways, Gonzalez-Torres’ art exemplifies a process of queer mourning. By upholding the intersubjective nature of selves, his installations link together the personal experiences of viewers and insist that the loss of one can be relevant to many. By urging hope over despair and active response over defeated passivity, GonzalezTorres’ art can be viewed as a dynamic, collective, and celebratory process of queer mourning. Its insistence that mourning need not be a self-contained pathology but may impact and unite a broad public offers hope for communities in the face of loss. Keywords: AIDS, Felix Gonzalez-Torres, grief, hope, melancholia, queer mourning

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______________________________________________________________ ***** The art installations of Felix Gonzalez-Torres (1957-1996) frequently allude to the illness and loss of his lover and friend, Ross Laycock, to AIDS-related causes in 1991. And yet, amidst the personal and collective losses of the AIDS epidemic, Gonzalez-Torres’ art conveys a powerful sense of hope, joy, rejuvenation, and generosity. Against the expectation that grief might dominate or impede artistic production, Felix Gonzalez-Torres’ creations suggest a way of addressing loss that is hopeful instead of destructive, communal rather than privatized, and fluid instead of stagnant. I would like to suggest that Gonzales-Torres’ art provides an alternative to dominant, normative understandings of grieving. In Sigmund Freud’s 1917 essay “Mourning and Melancholia,” melancholia is described as a pathological grieving without end.2 However, in the artwork of GonzalezTorres, rather than a solely destructive force, melancholia allows for a continuous, fluid engagement with loss and with what remains after loss. In contrast to Freud’s discussion of bereavement, the art of Gonzalez-Torres does not insist upon letting go of a loss in order to overcome grief. The artist posits that the memory of people or events lost continues to affect the present and offers hope for the future. Through its insistence on collaborative spectators and its suggestion that a loss continues to impact the present in hopeful ways, Gonzalez-Torres’ art exemplifies a process of queer mourning. By upholding the intersubjective nature of selves, his installations link together the personal experiences of viewers and maintain that the loss of one can be relevant to many. By urging hope over despair and active response over defeated passivity, GonzalezTorres’ art can be viewed as a dynamic, collective, and celebratory process of queer mourning. Its suggestion that mourning need not be a self-contained pathology but may impact and unite a broad public offers hope for communities in the face of loss. 1. Mourning and Melancholia: From Destruction to “Amorous Embrace” In his influential essay, “Mourning and Melancholia,” Freud draws a distinction between mourning and melancholia as follows: mourning grieves for a loss that results in decathexis, or the breaking of an attachment, while melancholia fixates on a loss, refuses to let go, and instead relocates the loss in what Freud labels “the region of memory traces of things.”3 While in mourning the lost object is laid to rest and stable, melancholia represents a sustained, enduring, and pathological devotion by the ego to the lost object. This condition results in “a profoundly painful dejection, cessation of interest in the outside world, loss of the capacity to love, inhibition of all activity” and numerous other pathologies.4

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______________________________________________________________ While Freud recognizes that mourning and melancholia may contain similar elements, melancholia is deemed pathological while mourning remains “normal”.5 Freud believes melancholia’s sustained devotion to the lost object threatens the ego’s well being and survival. Instead of moving on and replacing the lost object, the melancholic ego identifies with the lost object and through a process of incorporation integrates the lost object into its own self. For Freud, the melancholic process of incorporation is a regressive movement that leads only to the impoverishment of the ego. In contemplating mourning and melancholia, I offer that the refusal to let go of a loss need not be a destructive pathology, threatening to the very existence of the ego. Rather, as Gonzalez-Torres’ art suggests, dedication to the lost object and the refusal of closure may be sources of creativity, productivity, and hope. For Gonzalez-Torres it is this very persistence of a loss that inspires hope, joy, and creativity. Rather than a pathological force that disrupts productivity, melancholia is the source of inspiration. This artist posits that the memory of people lost continues to affect the present and offers hope for the future. In a 1992 exhibition through New York City’s Museum of Modern Art, Gonzalez-Torres installed twenty-four billboards across the city. “Untitled”, 1991, a photograph of the artist’s own bed placed onto the twenty-four billboards, commemorates the date of Ross’ death.6 Visitors entered the museum’s exhibit only to find a single image and a guide to the exhibit locations across all five boroughs of New York City.7 However, by displaying the image throughout various neighbourhoods of New York City, Gonzalez-Torres invites a broad public to celebrate and grieve the life and death of Ross. In this way the process of bereavement for Gonzalez-Torres was far from an internalized, self-contained pathology. Rather, the artist invited a broad and diverse public to consider their subjective relationship to an unmade bed.

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“Untitled”, 1991 ©The Felix Gonzalez-Torres Foundation. Courtesy of Andrea Rosen Gallery, New York. At first glance Gonzalez-Torres’ photograph appears as an empty bed with ruffled sheets and two pillows. And yet, upon closer consideration, one can gradually decipher the indentations of two bodies in the pillows. While the bed remains empty, the impact of the image is powerful. Although few individuals who come into contact with the billboard are aware of the artist’s connection to Ross, all can be moved by the palpable absence of the empty bed’s two bodily indentations. The image seduces the viewer into engagement—spectators don’t just look; we feel. Whether we are longing for a nap or a lover the image acts as a blank slate, compelling us to project our experiences onto its surface. In this way the artist forges a public and communal loss composed of a collection of individual, personal losses. Although each of us will have our own shifting stories, we are joined in a public communion that encourages us to add our experience to a broader story. With “Untitled”, 1991, the artist asks us not to stand back as passive viewers but to value and take responsibility for our own subjective experiences. We are urged not to give up our losses and move on but rather to transform our losses into desires, hopes, and actions.

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______________________________________________________________ Through works such as “Untitled”, 1991, Gonzalez-Torres engages his audience in a creative melancholic process. Viewers are encouraged to delve into their own memories and losses and to celebrate rather than relinquish these experiences. The philosophical writings of Giorgio Agamben, a contemporary of Felix Gonzalez-Torres, offer a similar message.8 Branching off from Freud’s initial work, Agamben offers a depiction of a melancholia liberated from pathology. In his 1917 essay, Freud notes that because we understand mourning better than we do melancholia, mourning is viewed as less pathological. Entering the window that Freud left open, Agamben seeks to construct an understanding of melancholia as creative, generative, and productive. As Agamben writes, “the specific ambition of the ambiguous melancholic project [is]… to transform into an object of amorous embrace what should have remained only an object of contemplation.”9 While mourners temporarily contemplate and remember a loss only to then later move on, Agamben’s melancholics engage in a more passionate connection. According to Agamben, “the strategy of melancholia opens a space for the existence of the unreal.”10 This potential space, a phantasmic alternative reality, allows for an engagement with loss that is lively, imaginative, and active, far from stable and dead. In addition, I suggest that what Agamben describes as “a space for the existence of the unreal” might be no more or less authentic than everyday “reality.” This space is not a pathological hallucination or regressive escape from responsibility, as Freud might suggest, but rather, like the art of GonzalezTorres, a hopeful place for imagining alternative ties between past and present, loss and what remains. In Gonzalez-Torres’ “Untitled” (Blue Curtains), a black and white photograph captures a billowing breeze that rushes through lightweight curtains strung across a window.11 With a palpable force, light shines through the translucent fabric. “Untitled”, 1992, is a billboard installed in a Munich train station.12 Again, light shines through sheer curtains in such a way as to suggest a phantasmic form on the other side. Although the viewer cannot completely decipher the mystery, the artist suggests a haunting ghost-like presence, a figure that calls out to the viewer, even as it remains undisclosed. Agamben explains that through the phantasmic embodiment of the lost object, the ego maintains a connection to the loss without threatening the stability of the ego. The lost object is not lost entirely because, through a phantasmic realm, the bereaved actively and creatively engages with the loss. Agamben writes: “It is uncertain that one can speak of a loss at all”.13 For in melancholia, the lost object is not absent but rather is fully engaged with the bereaved. To view photographs by Gonzalez-Torres is to encounter the simultaneous absence and presence of bodies. In “Untitled”, 1991, the absent

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______________________________________________________________ body is just as compelling as the present body. The artist’s suggestion of a palpable absence extends beyond the frame of a photograph as the artwork refuses to let go of a lost body and instead upholds that the remains of the lost body continue to matter. We viewers are haunted by the remains of human bodies that once inhabited this space. The effect is a poignant sense of loss and longing. As the scholar Jose Muñoz suggests, “the lost and dead are not altogether absent.”14 Moreover, desire and despair may co-exist. 2.

Queering Boundaries between Living and Dead The radical potential of melancholia lies in the interpretation not of what is lost but instead of what remains. This conception, of an enduring active social relationship between the surviving and the lost, challenges assumptions of the temporal and spatial boundaries between living and dead. In a medicalized or Freudian model of grief, the rhetoric of successful “healing,” entails “coming to terms” with death and “getting on” with life. The continuous social connections between the survivors and the deceased evident in the artwork of Gonzalez-Torres threaten the binary distinction between life and death and challenge a dominant medical discourse that endorses giving up and letting go of the dead as the appropriate way to ease grief. Although dying and the dead often fall under a medicalized model, they also exist outside of conceptions of biology and science. While a medicalized model imposes a binary division between living and dead, it is possible to challenge the distinction between these two realms.

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“Untitled” (Portrait of Ross in L.A.), 1991. ©The Felix Gonzalez-Torres Foundation. Courtesy of Andrea Rosen Gallery, New York. “Untitled” (Portrait of Ross in L.A.), a pile of colourful, cellophanewrapped candies, celebrates the life and death of the artist’s lover, Ross. 15 The ideal weight of the pile is one hundred seventy-five pounds, suggesting the weight of Ross’ body. Museum guards and a plaque on the wall urge spectators to take and consume pieces of the candy sculpture. The candies, metaphorical representations of the body of Ross, continue to develop a life of their own as they become scattered, consumed, treasured, or left to languish, forgotten in pockets. The artists’ candy sculptures are depleted only to be constantly regenerated as the art institution refills them. There is no beginning or end, no original or final. The art is a fluid, continuous process, shifting and growing in time and space. Furthermore, through the simple gesture of inviting audiences to devour candies, the artist allows viewers to participate in a collective mourning of Ross, a mourning that transcends boundaries between individual lives and death. While the spectators’ relationship to the candies will be affected by their particular experiences, Gonzalez-Torres manages to link various experiences together through a mode of celebration. The artist’s validation of, and insistence upon spectator participation forges a space for

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______________________________________________________________ intersubjectivity. Once again, meaning is made not by the individual artist or artwork but by a collective. Gonzalez-Torres’ work offers multiple possibilities, not only for art but also for bodies, because his art challenges the solidity of the body itself. His installations insist that a lost body continues to matter socially and that the boundaries between bodies are penetrable. By offering a metaphor for the lost body of his lover to art spectators throughout the world, Gonzalez-Torres establishes a fluid notion of bodies that, while respecting the subjectivity of individuals, simultaneously suggests a collective. By reinvesting loss into the social, Gonzalez-Torres takes an activist position, urging a public that is dynamic, participatory, and responsible. In the conclusion to the radical “Cyborg Manifesto,” theorist Donna Haraway asks “Why should our bodies end at the skin, or include at best other beings encapsulated by skin?”16 In the unconventional artwork of Gonzalez-Torres, the artist insists that one artist’s work can be collaboration by a community and that one individual’s loss can be shared by a collective. Haraway questions why bodies necessarily have to end at the skin, and to this we might add why do bodies have to end upon death? The art of Gonzalez-Torres suggests that there is no social ending. 3.

Queer Mourning In Gonzalez-Torres’ installations, a lost body holds relevance in the present as we the audience evoke our own memories, losses, joys, and sorrows. The political significance of this notion is transformative for a society living with HIV/AIDS and for communities whose histories and losses too often remain unconsidered or excluded. In the age of AIDS, melancholia and mourning are ongoing processes that simultaneously seek memory of lives lost and hope for the future. Douglas Crimp, in his analysis of radical action in response to the early HIV/AIDS epidemic, insists that given the urgencies of queer life, grieving must not be a debilitating, stagnant process but must instead co-exist with activism. Within his discussion of ACT UP [AIDS Coalition to Unleash Power], Crimp demonstrates how ACT UP advocated a collective, public enactment of mourning away from privatization and silence through loud, pro-active, and decidedly queer expressions of loss.17 ACT UP’s protests mark a liberating disruption in the normative arc of mourning as outlined by Freud in “Mourning and Melancholia.” The melancholic dedication to the lost, characteristic of GonzalezTorres’ art, is a queer mode of bereavement. Like his ACT UP contemporaries, Gonzalez-Torres seeks a communal, active audience. His art is not meant for a stagnant spectatorship; it is offered as a source of collaboration.18 The public is invited to participate in communal mourning in which the experiences of individuals form a collective and the past continues

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______________________________________________________________ to matter in the present. In this way, queer mourning seeks to undermine constructions of mourning as privatized, isolated, and finite and to posit instead the need for public, ongoing, and communal practices. At the same time that “our culture has so privileged the idea that the important struggles in life are all individual,” the art of Felix Gonzalez-Torres reinvests loss into the social.19 By moving the creative powers of art outside of art institutions, Gonzalez-Torres, forges a public, collective engagement with loss. At a time of immeasurable loss, Gonzalez-Torres’ art insists on hope. The artist offers alternative understandings of life and death through intersubjective, social experience, rather than solely through biological bodies. In this way, participatory spectators of one of Gonzalez-Torres’ candy sculptures transgress the boundary between the dead and the living and ensure an active, social memorial to the dead. Through Gonzalez-Torres’ intimate offerings, he invites viewers to commemorate life and death both as individuals and as members of a greater community. Moreover, as his art mourns losses, it simultaneously celebrates the ephemeral beauty of life. This suggests a vision of mourning as creative and unifying, rather than destructive and alienating. By sharing his loss and joy, Felix Gonzalez-Torres moves us to consider our own.

Warmest thanks to Frances Freeman Paden, PhD, Northwestern University With love for Carl, Debby, Wendy, and Eric

Notes 1

Donna Haraway, “A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late Twentieth Century,” in Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), 178. [An earlier version appeared in Socialist Review, 15 (1985): 65-107]. 2 Sigmund Freud, “Mourning and Melancholia,” in The Standard Edition of the Complete Psychological Works of Sigmund Freud, vol. 14, translated and edited by James Strachey (London: Hogarth Press, 1957). 3 Ibid, 256 4 Ibid, 244 5 Ibid, 243 6 Felix Gonzalez-Torres, “Untitled”, 1991, billboard, dimensions vary with installation, Collection of the Museum of Modern Art, New York. 7 Anne Umland, “MoMA Projects 34 Essay” (New York: The Museum of Modern Art, 1992). Creative Time Past Projects 2000, (January 25, 2004). .

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Giorgio Agamben, Stanzas: Word and Phantasm in Western Culture, translated by Ronald L. Martinez (Minneapolis, University of Minnesota Press, 1993). 9 Ibid, 20 10 Ibid, 20 11 Felix Gonzalez-Torres, “Untitled” (Blue Curtains), 1989-1991, blue fabric and metal rod, dimensions variable, Castello di Rivara, Torino. 12 Felix Gonzalez-Torres, “Untitled”, 1992, billboard, dimensions variable, Collection Goetz, Munich. 13 Agamben, 20 14 Jose E. Muñoz, “Photographies of Mourning: Melancholia and Ambivalence in Van Der Zee, Mapplethorpe, and Looking for Langston” in Race and the Subject of Masculinities, edited by Harry Stecopoulos and Michael Uebel (Durham: Duke University Press, 1997), 347. 15 Felix Gonzalez-Torres, “Untitled”, (Portrait of Ross in L.A.), 1991, multicolored candies, individually wrapped in cellophane (endless supply), dimensions vary with installation, Collection of Howard and Donna Stone on extended loan to Art Institute of Chicago. 16 Haraway, 178. 17 Douglas Crimp and Adam Rolston, AIDS Demo Graphics (Seattle: Bay Press, 1990). 18 Gonzalez-Torres art follows in the tradition of Minimalism. In the Minimalist style, objects are stripped down to their elemental, geometric form and presented in an impersonal manner. Minimalism reduces a work of art to a minimum of colors, shapes, lines, or textures. The Minimalist artwork does not seek to represent or symbolize any other object or experience. 19 Gibbons, Reginald. Presentation at the panel discussion, “Turning Trauma and Recovery into Art; Creative Languages of Injury and Resiliency.” Palmer House Hilton, Chicago. (29 October 2003.) [Cited with written permission by Dr. Gibbons].

References Agamben, Giorgio. Stanzas: Word and Phantasm in Western Culture. Translated by Ronald L. Martinez. Minneapolis, University of Minnesota Press, 1993. Crimp Douglas and Adam Rolston. AIDS Demo Graphics. Seattle: Bay Press, 1990.

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______________________________________________________________ Freud, Sigmund. “Mourning and Melancholia,” vol. 14, The Standard Edition of the Complete Psychological Works of Sigmund Freud. Trans. and ed. by James Strachey. Gibbons, Reginald. Presentation at the panel discussion, “Turning Trauma & Recovery Into Art; Creative Languages of Injury and Resiliency.” Palmer House Hilton, Chicago. 29 October 2003. [Cited with written permission by Dr. Gibbons.] Gonzalez-Torres, Felix. “Untitled” (Blue Curtains), 1989-1991, blue fabric and metal rod, dimensions variable, Castello di Rivara, Torino. ________.”Untitled”, 1991, billboard, dimensions vary with installation, Collection of the Museum of Modern Art, New York. ________. Untitled, (Portrait of Ross in L.A.), 1991. Collection of Howard and Donna Stone on extended loan to Art Institute of Chicago. ________.”Untitled”, 1992, billboard, dimensions variable, Collection Goetz, Munich. Haraway, Donna. “A Cyborg Manifesto: Science, Technology, and SocialistFeminism in the Late Twentieth Century” in Simians, Cyborgs, and Women: The Reinvention of Nature. New York: Routledge, 1991. Muñoz, Jose E. “Photographies of Mourning: Melancholia and Ambivalence in Van Der Zee, Mapplethorpe, and Looking for Langston” in Race and the Subject of Masculinities. Harry Stecopoulos and Michael Uebel (eds). Durham: Duke University Press, 1997. Umland, Anne. “MoMA Projects 34 Essay.” New York: The Museum of Modern Art, 1992. Creative Time Past Projects 2000. January 25, 2004.

Contributors Bill Campbell, Researcher, Human Animal Bond and Grief and Department of Applied Community Studies, Faculty of Health, Social Care and Education, Manchester Metropolitan University, Manchester, United Kingdom. Nele De Bal, Centre for Health Services and Nursing Research / Centre for Biomedical Ethics and Law, Faculty of Medicine, Catholic University of Leuven, Belgium. Susan Dawson, Researcher, Human Animal Bond and Grief and Department of Applied Community Studies, Faculty of Health, Social Care and Education, Manchester Metropolitan University, Manchester, United Kingdom Bernadette Dierckx de Casterlé, Associate Professor of Nursing Ethics Centre for Health Services and Nursing Research, Faculty of Medicine, Catholic University of Leuven, Belgium. Chris Gastmans, Associate Professor of Medical Ethics, Centre for Biomedical Ethics and Law, Faculty of Medicine, Catholic University of Leuven, Belgium. Karl Traugott Goldbach, studied composition, electro-acoustic music and library and information science. He holds a PhD in Musicology. Since July 2008, he has been at the Louis Spohr Akademie (archive and museum dedicated to the life and work of Louis Spohr and to the history of violin playing), Kassel, Germany. Emily Boone Hagenmaier, Department of Social Welfare, University of California, Los Angeles, USA. Asa Kasher, Laura Schwarz-Kipp Professor Emeritus of Professional Ethics and Philosophy of Practical, Tel Aviv University, Israel. Mary Josephine Mahoney, Assistant Professor of English and Creative Writing, Elmira College in New York, New York, USA. Una MacConville, Sociologist, Department of Social and Policy Sciences, University of Bath, United Kingdom.

170 Contributors ______________________________________________________________ Regina McQuillan, Palliative Medicine Consultant, St. Francis Hospice and Beaumont Hospital, Dublin, Ireland Werner Nell, Subject Group Sociology, School of Behavioural Sciences, North West University (formerly, Potchefstroom University), South Africa Chris J. Onof, Department of Philosophy, Birkbeck College, University of London, United Kingdom Jeremy Weinstein, Faculty of Health and Social Care, London South Bank University, London, United Kingdom.