The Right to Die. Public Talk Series. INSTITUTION Topsfield Foundation, Pomfret, CT

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AUTHOR Pasquerella, Lynn TITLE The Right To Die. Public Talk Series. INSTITUTION Topsfield Foundation, Pomfret, CT. Study Circles Resource Center. PUB DATE Oct 91 NOTE 48p. AVAILABLE FROM Study Circles Resource Center, P.O. Box 203, Pomfret, CT 06258 ($2). PUB TYPE Guides - Non-Classroom Use (055)

EDRS PRICE MF01/PCO2 Plus Postage. DESCRIPTORS Adult Education; *Civil Liberties; *Death; *Discussion Groups; Leaders Guides; Moral Values; Social Responsibility; Suicide; Terminal Illness; Wills IDENTIFIERS *Euthanasia; *Right to Die; Study Circles

ABSTRACT This program guide on the right to die provides policy issue information where ethical concerns have a prominent place. Three positions about the right to die are presented: (1) mercy killing and assisted suicide should be legally permitted in certain cases; (2) legal status should be given to living wills and other advance directives that would allow people to die with dignity, but mercy killing and assisted suicide should be legally prohibited; and (3) both mercy killings and allowing patients to die by withholding life-saving treatment should be legally prohibited. In addition to an introductory letter, this guide includes the following information: (1) the right to die--a framework for discussion; (2) a summary of the positions; (3) an examination of the positions; (4) glossary;(5) supplemental reading;(6) your continued involvement in this issue;(7) suggestions for leading this discussion; (8) leading a study circle;(9) suggestions for participants; (10) follow-up form; and (11) Public Talk Series Programs and other resources available from the Study Circles Resource Center. (NLAL)

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I Public Talk Series

THE RIGHT TO DIE

October 1991

OF toucATION "PERMISSION TO REPRODUCETHIS U.S. DEPARTMENTResearch andimprovement Office of Educational MATERIAL HAS BEEN GRANTEDBY RESOUkCESINFORMATION EDUCATIONALCENTER IERICI reproduced as has been This document person ororganization received from the oriwnating it nave bun madeto improve CI Minor changes reproduction Quell! y on this dec0 . opinions stated Points of view or official TO THE EDUCATIONALRESOURCES ment do notnecessanIy represent nr) OERI position orporicy INFORMATION CENTER (ERICI."

"Histoty, theology, and philosophy will show that every enlightenedcivilization has had a sense of or) tight and wrong and a need to tty todistinguish them."

Michael Josephson, ethicist from Bill Moyers' A World of Ideas

2 LEST COPY AVAILABLE The Right to Die

302 A Table of Contents

Introductory Letter 1 The Right to Die: A Framework for Discussion 3 A Summary of the Positions 10 An Examination of the Positions ' 12 Glossary Supplementary Reading ' 23 Your Continued Involvement in This Issue 35 Suggestions for Leading The Right to Die 3- Suggested Discussion Questions 4,! Leading a Study Circle 42 Suggestions for Participants 44 Follow-up Form inside back cover

*Material to be duplicated for participants

The Right to Die is a project of The Study Circles Resource Center of Topsfield Foundation, Inc.

Primary Author: Lynn Pasquerella, Ph.D. Editor: Martha McCoy Layout: Phyllis Emigh

The Study Circles Resource Center (SCRC) is funded by the TopsfieldFoundation, Inc., a private, non-profit, non-advocacy foundation dedicated to advancing deliberative democracy and improvingthe quality of public life in the United States.SCRC carries out this mission by promoting the use of small-group, democratic,highly participatory discussions known as study circles.

Please write the Study Circles Resource Center at PO Bar 203, Pomfret,CT 06258, call (203) 928-2616, or FAX (203) 928-3713 fcs more information on study circles and the Study Circles Resource Center. September 1991

In a democracy, it is crucial that the public have input into the decisions government makes. Citizens must listen to a variety of viewpoints, consider the consequences of all positions, and make hard choices. The Study Circles Resource Center's Public Talk Series is basedon this belief. The programs of the series are designed to assist in the discussion of critical social and political issues; each offers a balanced, non-partisan presentation of a spectrum of views. ADVISORY BOARD Beniamin Barber The Right to Die provides the information your group will need in ,Vall Whitman Center tor the oilure and Politics ot Democracy quitters University order to hold a discussion on a special kind of policy issue one in which Mary Birmingham ethical concerns have a prominent place. Such issues are especially metronet tA Library Network! difficult to grapple with since people's deeply held beliefscome into play, Paul I. Edebon ,11001 or Continuing Education and yet there are few opportunities to reflect on these beliefs inan ate University or New VOrk A ',MY Brook impartial setting. As medical technology continues to advance, decisions Peter Eneberg Notional Swedish Federation about life-prolonging treatments are becoming more complicated. Society a Achill Educational Associations is being forced to come to grips with the value questions thatare raised susan Graseck Center tor Foreign Policy Develooment by new circumstances; attention to public policyon the right to die is t3rown University increasing as courts across the country make rulings Ir)sePti V Julian on precedent-setting si hoot ut Citizensrup cases. We encourage you to invite your organization's members, friends, .ind Public Affairs ssracuse University neighbors, and co-workers to join withyou in a discussion of this difficult Ion Rve Kingnorn Nationai Issues Forums issue. F rances Moore Laope :istitute tor ihe Arts a Demo( rat v A summary of the material I eonard P. Oliver (Suer Assoc tales Three possible positions about the right to dieare at the heart of this Neil Parent Conterence ot Diocesan program: Directors or Peligious Education Dorothy ShIelds Position 1 Mercy killing and assisted suicide should be legally per- SFL.cio Department ot Education David T. Taylor mitted in certain cases. Clinnectscut Conference the UniteO church otChrist Position 2 Legal status should be given to Living Wills and other advance directives that would allow people to die a natural death with dignity, but mercy killing and assisted suicide should be legally prohibited under all circumstances. Position 3 Both mercy killing and allowing patients to die by withholding life-saving treatment should be legally prohibited,even when requested by those who are competent and terminally ill. These positions are the starting point fora highly participatory discussion in which a leader assists participants in grappling with the issue of the right to die. Although the arguments for and against these positions are primarily of an ethical nature, each position advocates a distinct public

Route 169P.O. Box 203 Pomfret, Connecticut 06258 (203) 928-76? 6 FAX (203) 926-3713 The Right to Die Organizing a small-group discussion on this issue The positions and the supporting material are designed for usr ',I a single-session program of approximately two hours. The organizer will need to recruit bk. esn 5 and 20 participants, decide on a time and place for the meeting, select a discussion leader, photocopy the materials (participants will need copies of items marked with an asterisk in the table of contents), and distribute them to participants.If there is not enough time to mail information to participants prior to meeting, the components that should be handed out during the meeting are "A Framework for Discussion," "A Summary of the Positions," "Suggestions for Participants," and the "Follow-up Form." The organizer's most important task is choosing the discussion leader. This person need not be an expert on the subject being discussed, but should have some familiarity with it. The leader should be able to encourage participants to freely express their thoughts while preserving some focus to the session as a whole. A commitment to balance and impartiality is essential.Included for the leader's use are "Suggestions for Leading The Right to Die" and "Suggested Discussion Questions." The leader should also read carefully the general suggestions in "Leading a Study Circle."(Please see the back cover of this packet for information on additional resources on organizing and leading study circles available from SCRC.)

Organizing further discussions The Study Circles Resource Center (SCRC) makes this material available in part to encourage discussion of this particular issue; our end goal, however, is to encourage citizen debate on the wide range of issueswhether local or national confronting our society. We hope that the use of this material will inspire your group to become a "study circle," meeting regularly to discuss issues of common concern. Several options are available to groups wanting to carry on to discuss other issues. See the back cover of this packet for a list of other programs in the Public Talk Series. Also noted on that page is SCRC's clearinghouse list of discussion programs developed by a variety of organizations.If your group would like to take on an issue for which no ready-made discussion package is available, a few good newspaper or magazine articles can provide the basis for dialogue. Please call us at SCRC for advice on developing your own study circle material. We invite you to take part in the richly rewarding discussion that can result when you meet with your peers, associates, friends, and neighbors in small, informal gatherings to discuss the concerns of our society. And we encourage you then to communicate the outcomes of your discussion to relevant policymakers, for only then can your informed judgment influence policy.

2 The Right to Die A Framework for Discussion

When asked to contemplate whether At the prescribed hour, a nurse there are any circumstances under which it would give Jack a shot of the synthetic would be morally permissible to end some- analgesic, and this would control the one's life out of considerations of mercy, pain for perhaps two hours or a bit among the most compelling and persuasive more. Then he would begin to moan, cases brought to mind are those similar to whimper, very low, as though he the following one described by journalist didn't want to wake me. Then he Stewart Alsop, during his treatment for ter- would begin to howl like a dog. minal cancer: When this happened, either he or The third night that I roomed with I would ring for a nurse, and ask for a Jack in our tiny double room in the pain-killer. She would give codeine or solid-tumor ward of the cancer clinic the like by mouth, but it never did of the National Institutes of Health in any real goodit affected him no Bethesda, Md., a terrible thought oc- more than half an aspirin might affect curred to me. a man who had just brokGn his arm. Jack had a melanoma in his belly, Always the nurse would explain as a malignant solid tumor that the doc- encouragingly as she could that there tors guessed was about the size of a was not long to go before the next softball. The cancer had started a few intravenous shot"Only about 50 months before with a small tumor in minutes now." And always poor his left shoulder, and there had been Jack's whimpers and howls would be- several operations since. The doctors come more loud and frequent until planned to remove the softball-sized the last blessed relief came. tumor, but they knew Jack would soon The third night of this routine, the die. The cancer had metastasized it terrible thought occurred to me. "If had spread beyond control. Jack were a dog," I thought, "what Jack was good-looking, about 28, would be done with him?" The an- and brave. He was in constant pain, swer was obvious: the pound, and and his doctor had prescribed an in- chloroform. No human being with a travenous shot of a synthetic opiate spark of pity could let a living thing a pain-killer, or analgesicevery four suffer so, to no good end. (Stewart hours. His wife spent many of the Alsop, 'The Right to Die With Dig- daylight hours with him, and she nity," Good Housekeeping, 1974.) would sit or lie on his bed and pat Is there a right to die with dignity, as the him all over, as one pats a child, only If so, what more methodically, and it seemed to title of Alsop's article suggests? help control the pain. But at night, is its basis and what are the conditions under when his pretty wife had left (wives which a person is morally justified in exercis- cannot stay overnight at the NM clin- ing this right? Further, what are the duties that would correspond to the right to die? ic) and darkness fell, the pain would attack without pity. For example, if there is a right to die, does it

Study Moles R000uros CorderPO Box 203 (203) 02S-2816 FAX (203) 9213-3713 36 7he Right to Die include the obligation on the part of others made it clear that she does not want to to provide aid-in-dying for those who wish to be re-,uscitated if death is imminent and end their lives? Or, does this right merely she suffers cardiac arrest. A copy of require that no one interfere with another's this document is on file in the hospital decision regarding death? when the patient is brought in to the emergency room after she is discovered Along with these considerations are im- unconscious, having slit her wrists and portant questions about who should decide swallowed a bottle of tranquilizers. for our society whether there is a right to die Should the emergency room physicians with dignity and what that means in practice. be required to attempt to revive the pa- What should be the role of government (typ- tient? ically thought of as the only institution with a valid claim to representing all of society) in A 52-year-old woman, who had enforcing any decision? For example, should suffered a cerebral hemorrhage four there be laws that allow not only for the years earlier, is now irreversibly coma- withholding of life-saving treatment, but also tose.With the use of anzficial life-sup- permit mercy killing and assisted suicide? port systems, she can be kept alive in- Or, should there be laws that prohibit one or definitely. Her family asks that the all of these actions? intravenous feeding tubes being used to supp47 her nutrition and hydration be There are many complexities involved in removed so that she may be allowed to answering these questions; they touch on our die a natural death with dignity.The basic hopes and fears about life and death. family claims that they are making the In addition, there are difficulties in coming to decision she would make if she were common definitions how do we even determine whether an act constitutes an act of able, even though she never made clear what she would want done tf she were "mercy killing" or assisted suicide? These complications can be further illustrated by to lapse into a comatose state. Accord- ing to them, she was so vital and considering the following cases: placed such a high value on an active A 90-year-old man with no known mental life that she would be honified family has severe pneumonia; he re- at what is being done to keep her body quests a ventilator to assist him in functioning. Should the hospital be breathing. After being told that his allowed to remove the feeding tubes room in a welfare hotel has been rented from this patient at the request of her to someone else, he requests that the family? ventilator be removed. Should his doc- A 25-year-old man has been severely tors grant the request? injured in an explosion.The young A 60-year-old woman who has been man, who was once a star athlete, is in failing health over the past two years now blind, deaf in one ear, grossly de- is told that she has terminal cancer of formed due to burn scars, and a double the liver.She is distraught, but seems amputee as a result of gangrenous limbs to accept her fate and makes plans for that were removed when infection from the eventuality of her death. By signing the burns could not be controlledThis a Living Will (see glossary), she e.rpres- patient repeatedb, refused treatment, but ses ht.:- wish to have life-sustaining treat- was nevertheless treated against his will. ment wualteld if the burdens of treat- A year after being released from the ment outweigh the benefits, and has hospital, he is still adamant that he

4 The Rightto Die wants to die. He asks his brother on The decisions we would make in these several occasions to take his hunting cases are influenced by reason and by deeply gun and shoot him. Given that the held beliefs about the meaning of life, the medical community has failed to grant meaning of death, and the importance of his requests to forego treatment and let individual autonomy (see glossary). The him die, should the man's brother be emotions of fear, compassion, sorrow, an- free from prosecution if he consents to guish, and perhaps even contempt and dis- the burn victim's request? gust will also play a part. Whether we think that life is valuable in and of itself or, on the On the day thty brought their first other hand, that the value of life is instru- child home, a couple left the hospital mental (that is, that life is valuable only be- with a daughter who was seriously de- cause it is able to provide the experiences we forme.d. She had a misshapen skull, consider worthwhile) will no doubt influence her arms and legs had failed to develop, our perceptions of death and the importance her large intestine emptied into her vagi- we place on the quality of life.In cases in na, and she had no muscular control which life can no longer provide the experi- over her bladder.That evening, the ences that we regard as meaningful, death child died from a lethal dose of tran- may not be considered an evil. While some quilizer put into her formula by her deaths are indeed tragic ones, some lives mother. The couple said the fact that might be considered tragic as well. In both their daughter had a normal brain and cases the tragedy is a result of thwarted aspi- would know her fate led them to the rations, plans that will never be carried out, decision that they "couldn't let her live work that will rp.rer be done, and relation- like that." Did the couple make the ships cut short or never developed. right decision? Which of the cases presented above con- Is This Life Worth Living? Who Decides? stitutes mercy killing or assisted suicide? Because we are confronting moral dilem- Which are morally permissible? Which mas within the area of medical ethics, many should be legally permissible? These cases of the questions that are raised must be introduce a range of ethical concerns and viewed in the context of the relationship policy questions regarding the right to die. between patients and health care profession- There are no easy answers to the questions als. The moral conflicts that arise in this raised by these cases.In fact, they are not setting are often a result of differing atti- presented in order to draw out definitive tudes about how to resolve disputes when answers, but rather because they cause us to the perceived rights of patients clash with the reflect on our most basic beliefs about how we should be allowed to live and to die. As perceived duties of doctors, nurses, and administrators.In many cases health care pro- new technologies are developed and society fessionals approach medical decisions dif- is faced Wi..i new choices about the meaning ferently than do patients and their families. of the right to die with dignity, it is hoped A difference in perspective often leads to that considering these issues with others will conflicts concerning what is in the patient's help promote a deeper understanding of the best interest (see glossary) and who should nature of moral conffict. The resolution of be allowed to decide what will promote it. these conflicts, leading to the adoption of The doctor's medical expertise enables him certain policies, will reflect which ethical or her to better predict physiological out- principles we regard as paramount. comes of treatment or the refusal The Right to Die of treatment. In this sense, the doctor is in patient will be benefitted by the treatment. the best position to determine how likely it is Second are cases in which the patient or the that medical intervention will promote physi- patient's family wants treatment to be con- cal well-being that is, improved health if tinued even though the doctor believes the possible or, at the least, the preservation of treatment will be futile. (The second type of life. case occurs more frequently than the first, but receives much less public attention.) However, only the patient can determine the extent to which delaying death will con- The cases described earlier represent only tribute to his or her overall well-being. From a few of the many kinds of situations that the patient's point of view, well-being may be happen each day calling for decisions about largely a function of self-determination, life-saving treatment. These complex and which the doctor may wish to override "for difficult decisions are often made without the the patient's own good." Of course, it is luxury of time to assess the alternatives. natural to want as much control over one's This is one of the reasons it is important to death as one would want over any other give thoughtful consideration to the issues event or process in life.In fact, it was the before we are confronted by them in our fear of not being allowed to control this personal lives. As individuals and as a soci- event that, last year, led Janet Adkins to ety we are faced with many questions, among enlibt the aid of Dr. Jack Kevorkian to cre- them the following: ate a suicide machine for her after her diag- To what extent should individual fi- nosis with Alzheimer's disease. Her realiza- nances enter into decisions about life- tion that eventually sLe would not be able to saving treatment? Should society put do what gave her life meaning or be com- limits on how much it will pay for this petent (see glossary) to decide for herself kind of treatment? In light of scarce how she wanted to die forced a decision that resources, who should decide when some saw as tragic and premature and others the costs of treatment outweigh the regarded as reasonable and life-affirming. possible benefits? Her case brought a public policy question to public attention: should actively assisting Is respecting a patient's autonomy someone in dying ever be legally permis- always the most important aspect of sible? providing good medical care, or are there other duties that take pre- For some patients, unlike Janet Adkins, cedence over a patient's decision to taking control of one's destiny means re- have his or her life ended? linquishing responsibility by giving permission to the doctor to do whatever he or she When is letting som- one die equi- thinks best. Giving the doctor complete au- valent to assisting in the person's sui- thority is, therefore, not necessarily incon- cide? sistent with respecting a patient's autonomy. Are mercy killing, suicide, or assisted However, at times there are conflicts be- suicide ever morally permissible? tween patients and health care professionals regarding the right to die; these conflicts To what extent is an ill person's desire generally take two forms.First, there are to die influenced by whether most those cases in which the patient or the pa- people in society would consider life tient's family wants to refuse or discontinue under their particular circumstances treatment even though the doctor thinks the worth living? The Right to Die Would allowing mercy killing and as- The one who complies with the re- sisted suicide lead to a perceived "duty quest for death does so from merciful to die"? motives. Should society do more to ease the However, with increasing frequency there burdens on the families of those who are cases in which one or more of these cannot care for themselves or is this a conditions is not met but which many would private matter in which the state classify as instances of euthanasia. For in- should not intervene? stance, ventilators and feeding tubes are often removed from patients who are irre- Talking About The Right To Die versibly comatose in order to allow them to die a natural death with dignity. Because In weighing the issues surrounding the these cases involve the withholding of treat- right to die, it will be useful to be familiar ment in an effort to hasten death, they seem with certain frequently used terms. The term to fall under the category of passive euthana- euthanasia is derived from the Greek words sia. Yet most comatose patients are not meaning "good death." Users of the English terminally ill, nor are they thought to be language have adopted the phrase mercy kill- suffering from pain.In addition, these in- ing as its closest synonym. dividuals are not in a position to request Ln its broadest sense, euthanasia is the death and may never have specified their intentional taking of another's life or the has- wishes for such a contingency ahead of time. tening of death by withholding of treatment Should these be regarded as cases of eutha- that could prolong a person's hfe, out of con- nasia? The answers we give to this question siderations of mercy.Within this broad cha- are likely to be a reflection of our attitudes racterization, we can distinguish two types of about whether mercy killing and suicide are euthanasiaactive and passive. When some- ever moral. one acts to end another's life frommerciful In the case of incompetent individuals, motives, the person has committed what is the decision to forego or discontinue treat- referred to as active euthanasia. On the ment is either made by them prior to their other hand, when one refrains from acting in falling into the comatose state or it is made order to hasten death, the result is termed by someone else. This leads us to draw an- passive euthanasia. other distinction between various forms of Until recently, euthanasia was commonly euthanasia. Euthanasia is termed voluntary used to refer to the allowing or causing of only when it is requested by a person who is death when all of the following specific con- competent to make decisions with respect to ditions were met: his or her own life. When a person's life is ended from merciful motives without his or The person whose life is ended is ter- her consent, euthanasia is either nonvoluntary minally ill. (when a person is not able to give rational The person is suffering from a great consent) or involuntary (when it is done deal of pain. against the person's wishes). The person will die soon anyway. There are vast number who fall into the category of "incompetent." Among them are: The person requests death as a means infants and children; those suffering from to en: suffering. insanity, dementia, and senility; the severely retarded; and the comatose. Advances in

; 0 7 The Right to Die medical technology and more frequent inter- These cases had an enormous influence vention to prolong life have dramatically in drawing attention to advance medical di- added to the number of incompetent pa- rectives and to right-to-die legislation.In tients. Who should be allowed to make deci- 1975, before the Quinlan case, only 5 states sions concerning their treatment? Do we had introduced right-to-die bills (giving legal have the right to make quality-of-life deci- status to Living Wills). Currently, 42 states sions for others? Do we attempt to deter- (as well as the District of Columbia) have mine what is in the best interest of those Living Will legislation; legislation is pending who are incompetent by attempting to make in the other 8 states. Documents such as the best possible judgment about what they Living Wills and Durable Powers of Attorney would choose if competent? for Health Care (see glossary) allow individuals to state, while competent, what they Living Wills and Other Advance Directives would want done or who they would want to The plight of many incompetent indivi- make decisions for them if they were no duals and their families was brought to na- longer in a position to decide for themselves. These advance directives provide important tional and international attention in the 1970s by the Karen Quinlan case and more decision-making guidelines; whether these recently by the Nancy Cruzan case, decided documents should be legally binding is one of by the U.S. Supreme Court in 1990. Both the policy debates surrounding the right to women suffered trauma that left them in die. Some would like to see their force strengthened by giving them legal status. what doctors judged to be irreversible comas. Others claim that such directives should not Both had families who requested that their daughter be allowed to die without the inter- be legally binding, given that a great deal vention of artificial life-support. The may change in terms of medical develop- ments and in a person's life between the Quinlans petitioned on behalf of their daugh- time the document is signed and the time at ter to have her treatment withdrawn, on the which it would be enforced. grounds that being kept on a ventilator was an unwanted bodily invasion and therefore Increased attention to Living Wills and violated her right to privacy. They also re- other advance directives during the past de- quested that no extraordinary measures be cade is also due to the diseases from which used to keep Karen alive, including the ad- people are dying in increasing numbers. The ministration of antibiotics. The Cruzans American Cancer Society tells us that three went even further in testing the courts, by out of four families will be touched by can- petitioning to have Nancy's nutrition and cer.In addition, more and more people are hydration tubes removed. In both cases, the dying from AIDS.It is predicted that more families eventually won the right to refuse than a million people will be infected with treatment and to have their daughters die this disease by the year 2000. The horrible natural deaths. Opponents of the decisions deaths frequently experienced by victims of argued that these women, who were emo- both of these diseases has led to increased tional and financial burdens and could not requests for help in dying; this has led to even make their own preferences known, did some calls for going beyond Living Will legis- not die "natural deaths." In fact, according lation to develop guidelines for a national to this argument, there was little or no dif- policy on euthanasia.In fact, while the sub- ference between letting them die and killing ject of euthanasia was rarely addressed in them. medical journals two decades ago, discussions of it are now quite common. Whatever one's opinion about this controversial subject,

)31 Th.e Right to Die there has been a growing public consensus Yet our society literally cannot afford to that medical professionals, trained to prolong ignore financial costs as a factor in determin- life, are often ill-prepared to deal with their ing what kinds of health care ought to be patients who are dying. provided for patients. There are increasingly heavy economic burdens to bear as a result The Future Is Not Like It Used To Be of advances in medical technology. Consider, for example, that each year pulmonary spe- Proportionately, the fastest growing age cialists save thousands of ventilator-de- group in the United States is the over-85's. pendent patients, most of whom are con- In the past two decades, the amount of the scious. Many of these patients, who are not federal budget spent on the elderly went necessarily terminally ill, will need more care from 15% to 28%. By the year 2000, we can than is usually available in nursing homes expect to spend $200 billion on medical care though they do not require the level of care for those over the age of 65 [Bonnie Angelo, provided by hospitals. Very few families are "Examining the Limits of Life," rune, No- able to provide care in the home for these vember 2, 1987, p. 761. This is part of a patients. So what is to be done when hospi- steady trend toward a health care crisis in tals insist that the patients be released? America. Who is to bear the cost in terms of medical For many elderly and chronically ill pa- and economic resources? Whether society is tients, it is already the case that "the future willing to help provide the necessary long- is not like it used to be."Instead of being term care will, in many of these cases, affect cared for and dying at home, 80% of Ameri- an individual's decisions about whether life is cans now die in hospitals [President's Com- worth living. mission for the Study of Ethical Problems in Decisions to forego treatment are not Medicine and Biomedical and Behavioral always a matter of the patient's choice; they Research, Deciding to Forego Life-Sustaining are sometimes dictated by limited resources Treatment (Washington, DC: Government (for example, any hospital has only a limited Printing Office, 1983), pp. 17-18.] Thus, number of ventilators). As a society we must most of the money spent on a person's establish the limits and priorities of life-sav- health care for his or her lifetime 's spent ing treatment and of aid-in-dying, unless we during the last six weeks of the person's life. are willing to have these choices prescribed These facts signal the need to make deci- for each of us by our particular circum- sions concerning the allocation of scarce stances. medical resources. Indeed, some states (such as Oregon) have proposed plans for ration- ing. The proposals include: not using respi- rators for the dying; prohibiting the use of Medicare payments for certain procedures (such as organ transplants, kidney dialysis, and by-pass surgery) for the elderly; and a ban on extraordinary means (including resuscitation, artificial feeding tubes, and costly antibiotics) for the terminally ill and those in irreversible comas. Critics contend that such plans shift the emphasis from the right to die to a "duty to die."

9 The Right to Die A Summary of the Positions

Position 1Mercy killing and assisted suicide should be legallypermitted in certain cases because: Those who do not or would not want to The quality of one's life is more im- continue living and whose conditions are portant than the amount of time lived. not likely to improve should be allowed The prohibition against mercy killing and the option of painless, humane, and digni- assisted suicide often results in needless fied deaths. suffering along with increased emotional Principles of mercy and beneficence (see and financial burdens. glossary) require that we prevent suffer- The state should not be allowed to limit ing by not allowing people who request a the free, rational, self-regarding actions of quick and painless death to endure a slow individuals to determine their meau of and agonizing one. death. Death is neither harmful nor violates the Public opinion favors allowing physicians right to life of individuals who request to provide aid-in-dying through mercy death when continued existence no longer killing or assisted suicide at the request of proves beneficial nor meaningful. the patient. Killing is no worse than hastening death Legalization would simply reflect the sym- by withholding treatment when one is pathetic attitude about mercy ldlling that motivated by mercy and death is certain is already prevalent in the courts. to result in either case.

Position 2Legal status should be given toLiving Wills and other advance directives that would allow people to die a natural death with dignity, but mercy killing and assisted suicide should be legallyprohibited under all circumstances. Legal status should be given to Living Wills andother advance directives that would allow people to die a natural death with dignity because: The right to die includes the right to re- Our society's over-reliance on medical fuse bodily invasion and forced interven- technology has led to the breakdown of tion, but does not include the right to humane, family-centered medicine and to demand death. its replacement with a technological science of medicine. There is no moral obligation to provide treatment that is futile or to save the The right to refuse treatment, even at the lives of those who will either suffer cost of one's life, is a fundamental right chronic, debilitating illnesses or remain derived from the rights to privacy, liberty, irreversibly comatose. and autonomy.

Study Circles Rseouros CenterPO Box 203(203) 928-2616 FAX (203) 928-3713

10 The Right to Die But, mercy killing and assisted suicide should be legally prohibited under all circumstances because: Allowing active euthanasia and assisted A policy permitting active euthanasia and suicide would signal a devaluing of human assisted suicide would foster the sense life that would lead to other forms of that there is a duty to die as opposed to killing, with the potential for the kind of a right to die. social policy adopted by the Nazis. Doctors and nurses, who would be the There is no adequate means for guarding most likely to perform acts of euthanasia against abuse and ensuring that a free and assisted suicide, take oaths requiring and rational decision has been made in a them to do no harm and to respect life. policy that allows active euthanasia and To allow their participation in such acts assisted suicide. would undermine trust in the medical profession. Allowing active euthanasia and assisted suicide would lead to the deaths of falsely The intentional killing of an innocent diagnosed patients who would have re- human being, despite the person's recovered if refusal of treatment alone were quest, is always wrong. allowed.

Position 3Both mercy killing and allowing patients to die by withholding life- saving treatment should be legally prohibited, even when requested by those who are competent and terminally illbecause: All human life is sacred and should be Allowing people to die has already placed preserved at all costs. us on a slippery slope toward disaster, signaled by the fact that providing food The right to life overrides all other rights, and water for patients who cannot nou- including the right to die. rish themselves is now considered extra- Withholding life-saving treatment when ordinary treatment in some cases. the benefits are very uncertain leads to Many patients who have been allowed to the unnecessary deaths of some who die suffered slow and difficult deaths, not would have benefitted if aggressive thera- the dignified deaths for which they were py had been required. looking. Foregoing life-support and refusing treat- Life should be maintained regardless of ment in many cases is simply a form of the cost, the physical condition of the suicide. patient, or the chances of recovery. The liberty of persons does not entitle Doctors should not be allowed to play them to end their own lives or the lives God with people's lives. of other innocent human beings.

11 The Right to Die An Examination of the Positions

Position 1Mercy killing and assisted suicide should be legally permitted in certain cases. People should be allowed the option of thanasia. How is assisting in death worse painless, humane, and dignified deaths when than hastening death by failing to provide they are dying or irreversibly comatose, or aggressive treatment? There is nothing mor- when the burdens of continued existence ally significant about the fact that in active make it such that they no longer consider euthanasia death is brought about by acting, their lives worth living and conditions are not as opposed to refraining from acting. Allow- likely to improve.It is unfortunate that soci- ing someone to die (as defined in most cur- ety imposes a choice on doctors: either ig- rent legal and professional standards) can nore the pleas of the suffering and the ex- involve direct action toofor instance, if pressed will of those who can no longer one "pulls the plug" on life-support for a speak for themselves, or face criminal prose- patient. Further, in both active euthanasia cution if you consent to end their pain. and allowing a terminally ill patient to die, Considerations of mercy and principles of the patients death is intended as a means to beneficence dictate that active euthanasia ending the person's suffering. The motiva- and assisted suicide should be legally permit- tion in each case is mercy. Finally, death is ted in certain circumstances. certain to result in both cases. Therefore, unless there is some morally relevant distinc- Killing vs. letting die. Current medical tion between active and passive euthanasia and legal practice reflect the attitude that that makes active euthanasia worse, we killing a terminally ill or irreversibly coma- should not use the grounds that killing is tose patient is always worse than letting the always worse than letting die to prohibit ac- person die. Both the law and the American tive euthanasia for the terminally ill. Medical Association sanction the withholding of treatment in order to prevent prolonged The irreversibly comatose. Patients who agony for the terminally ill.Yet, at the same are irreversibly comatose are not necessarily time, they forbid assisting in death by pre- terminally ill, but there is no medical hope of scribing or administering a lethal dose of recovery for them. The legal and medical pain medication. A policy that allows people duty to respect a patient's right to refuse life- to slowly wither away, starve, or suffocate in saving treatment under certain circumstances the name of "a natural death with dignity" has been extended to those who are not but prevents mercy killing in order to avoid terminally ill but are incapable of living un- the charge of causing death has no sufficient der their own power. Some, who have made moral basis and results only in suffering, their wishes known through Living Wills and wasted efforts, the fostering of false hope, advance directives, have exercised the right and financial hardship for many individuals to die by ordering in advance that their res- and their families. pirators should be turned off or that their feeding tubes should be removed. In other Consider first the claim The terminally ill. cases, family members or court-appointed that morality requires that we not grant re- guardians have also been allowed to make a quests from the terminally ill for active eu- "substituted judgment," refusing treatment on

Study Circlet Flamm Gullet PO Box 203 (203) 928-261e FAX (233) 928-3713 e Right to Die the patient's behalf and thereby hastening is violated only when we take it away against the deaths of those who never expressed the will of the person who possesses the their desires when they were able or who right.If a person willfully abdicates his or were never able to decide for themselves her rights, these tights are not violated when (e.g., infants, the severely retarded, and the the are taken away. A person who voluntari- insane). Since the law permits the starvation ly asks to be killed in order to have his or and dehydration of the irreversibly comatose, her suffering ended would not, therefore, what social benefit could there be in pro- have the right to life violated through active hibiting lethal doses of medication? In fact, euthanasia. Nor would a person who makes since we cannot be sure that the comatose provisions for aid-in-dying while competent are incapable of suffering, it would seem by expressing the desire to have his or her moraqy compelling to ensure that we take life actively ended if it were reduced to that precautions against this possibility. of a persistent vegetative state (see glossary). The quality of life. Not all acts of killing Considerations of personal liberty.If a should be considered harmful. In our rever- person makes a free and rational choice to ence for life, we mistakenly attach impor- end his or her life in order to prevent fur- tance to th., amount of time lived instead of ther suffering or, while competent, establish- the quality of that life.Considerations of the es the desire to have another assist him or quality of life are at least as important. One her in dying if the person can no longer of the reasons the direct, intentional killing speak or act on his or her own behalf, the of a person is considered such a grave harm state has no right to interfere. Even if active is that we are depriving the person of some- euthanasia and assisted suicide are consider- thing that is valued above all else namely, ed immoral by some, the law should not the person's life.But when a person no interfere with a competent adult's self-re- longer considers life worth living because it garding actions. The state should limit only involves a continuous state of pain, humilia- certain types of actions: those that are not tion, or total dependency, the benefits of fully rational, not fully voluntary, or likely to continued existence might be outweighed by lead to the harm of another. Even though the burdens. In these instances, death would any person's decision to die is likely to harm not be as harmful as continuing to live. To others, the individual's liberty should be li- be harmed by death requires that there is mited only if the benefits of limiting it will some benefit to be gained by continuing to outweigh the harm of failing to limit it.In live. Thus, the irreversibly comatose will not other words, the harm brought about by re- be harmed by death either, since they are stricting the person's actions must not be not in a position to be burdened or benefit- greater than the harm prevented by limiting ted by continued existence. However, since the person's freedom. their families are capable of suffering emo- Every dying patient should be allowed to tional and financial losses, and because medical resources are scarce, making provisions choose or reject euthanasia as a matter of personal liberty.In addition, all competent for quick and painless deaths in these in- individuals should be allowed to make legal stances has social benefits. provisions enabling others to assist them in The right to life.Just as not every act of ending their lives if they are documented to intentional killing is harmful to the person be in an irreversible coma. After all, it is killed, not every act of killing violates the the patient's life and no one else's. individual's fundamental right to life. A right

13 The Right to Die Underlying Principles and Assumptions 4. When the intention is the patient's death, the motivation is mercy, and death is 1. The value of life is dependent upon certain to result whether one acts or refrains its quality. Thus, the right to life should not from acting, it is no worse to cause death by be interpreted as the right not to be killed, acting than to hasten death by failing to act. but instead as the right to live at a certain minimum standard of quality. The person's 5. Whenever charges have been brought right to life is not violated, then, by killing against those who have performed active the person when the person perceives his or euthanasia, prosecutors have had a difficult her life as having fallen below this minimum time securing convictions. Legalization standard and consequently asks to be killed would merely be official acknowledgement of out of considerations of mercy. The same is the sympathetic attitudes toward mercy-killers true for those who are no longer in a posi- that already exist in the courtroom. tion to request death and yet have previously 6. A majority of the public, in repeated established the desire to have their lives end- annual polls and in increasing numbers, sup- ed under certain circumstances. ports the view that there are circumstances 2.Physicians have a duty to relieve suf- under which a doctor should be legally per- fering along with the duty to preserve life. mitted to grant a patient's request for a le- When there is a conflict between these two thal injection. The polls appear to reflect duties, the patient or his or her surrogate, the view that, given a choice between dying a the patient's family, and the doctor are en- slow, agoniZmg death or a peaceful, painless titled to resolve the conflict to bring about death from a fatal injection, very few of us whatever course of action is best for the would choose to suffer.If we would not patient. For humane reasons, a doctor want such a death forced upon ourselves, we should be allowed, with the informed consent should not require others to live by a law (see glossary) of the patient, to alleviate se- that dictates their choice by proldbiting ac- vere and prolonged suffering.It is often the tive euthanasia. case that terminally ill patients die as a result 7. Under certain circumstances, active of the adverse side-effects of pain medication euthanasia promotes everyone's best interest. that is administered in increasingly frequent In these cases, euthanasia serves to eliminate and intense doses. Rather than consign pa- the patient's suffering, to lessen the family's tients to a "state of narcotic stupor" for the emotional and financial burdens, and to re- remainder of their lives, we should allow lease medical resources for patients who can doctors to alleviate suffering in a manner be helped. When a social policy benefits that is consistent with human dignity. everyone and at the same time violates no 3.Principles of beneficence and mercy one's rights, it should be permitted under the require that we do not permit people without law. hope of recovery from suffering prolonged 8. The benefits and b-dens of active and agonizing deaths.It is cruel to allow a euthanasia should be evaluated in the same human being to linger for months in the final way as other medical procedures. Sometimes stages of agony, weakness, and decay.It is treatment is futile to the point where even also cruel for their loved ones to have to providing food and water presents a monu- endure this process. We should extend the mental task. Feeding the patient is possible same level of compassion to human beings by inserting tubes through the nose to the that we would grant to an injured and dying stomach or intravenously through one of the animal.

14 The Right to Die major veins in the chest. The latter is more against active euthannsia and assisted suicide traumatic and increases chances of blood- results in denial of self-determination for clotting, infection, hemorrhage, malnutrition, many. Our moral and legal traditions have or other complications that cause suffering always placed a high value on self-determina- and death. When we know that treatment is tion. The law should protect us against loss futile and will involve burdens to the patient of liberty with respect to personal choices. that cannot be outweighed by the benefits, to require that the patient be subjected to slow death by starvation as the alternative is in- human. We must allow the option of aiding patients in dying quickly and painlessly. Aid- ing in death by providing a lethal injection wouldn't be any worse than causing death by starvation and dehydration. In neither case would death be a result of a pre-existing condition. Take, for example, the case of Elizabeth Bouvia. Bouvia, who was not terminally ill, was bedridden, quadriplegic, and in a state of chronic pain.In 1983 she attempted to starve herself, and then was force-fed by a nasogastric tube in spite of her refusal. One of the judges in her case (speaking for the court of appeals that eventually ordered the feeding tube removed) said, 'The state and the medical profession, instead of frustrating desires, should be attempting to relieve suffering by permitting and, in fact, assisting death with ease and dignity. The fact that people are forced to suffer the ordeal of self-starvation to achieve their objectives is inhumane. The right to die should include the right to enlist assistance from others, including physicians, in making death as quick and as painless as possible." 9. A person's desire to end his or her own life is a personal matter between the patient and the physician, who acts as the patient's agent. The state has no right to interfere with another's choice in this case, even if in doing so the law is enacted for the person's own good. Our society places an extremely high value on self-determination. Though most dying patients can have their pain managed effectively, the prohibition

t r 16 The Right to Die Position 2Legal status should be given to Living Wills and other advance directives that would allow people to die a natural death with dignity, but mercy killing and assisted suicide should be legally prohibited under allcircumstances. The right to die with dignity does not Wills and other advance directives. This include the right to be killed or to be as- would allow individuals who can no longer sisted in suicide when one no longer con- speak for themselves or whose competency is siders life worth living. Rather, it is the right questionable the right to demand that their to refuse treatment when the burdens of lives not be artificially prolonged if they be- medical intervention outweigh the benefits. come terminally ill or irreversibly comatose. Advances in medical technology have en- It would also make provisions for the right to abled doctors to keep people's bodies func- refuse any form of treatment if the benefits tioning indefinitely. However tempting it of the treatment could no longer counter- may be, this ability should not lead us to balance the burdens. Instead of being used engage in a relentless pursuit to extend life. merely as suggested guidelines for physicians, We must acknowledge that while new tech- pru viding legal status in every state would nology is often able to save the lives of peo- better ensure that patients' wishes are car- ple who would otherwise have died, saving ried out. these individuals often consigns them to an Legal prohibitions. However, while we existence of chronic and debilitating illness. must guarantee the right of citizens to have Extending life should have its limits control over their own dying processes, a Limits on the benefits of life-prolonging legal policy allowing for active euthanasia technology. There are thousands of coma- and assisted suicide would signal that our tose patients connected to feeding tubes. society places very little value on human life. For many in this situation there is no real This prospect would have grave social conse- hope of regaining consciousness. Further- quences. Condoning voluntary euthanasia is more, in some cases their organs have deteri- likely to lead to the killing of others whom orated to a point at which they could not we regard as failing to possess a life worth survive for any length of time even if they living.Consider, for instance, severely de- were to regain consciousness. These patients formed infants, the irreversibly comatose, the should be allowed to die with dignity.In handicapped, the mentally impaired, and addition, there are many other individuals others who cannot speak for themselves. who have very rich mental lives but who are Once we have adopted a policy that allows living with conditions (terminal illness, chron- for the direct, intentional killing of some ic debilitating illness, or severe handicaps) innocent persons, what logical and moral that make it impossible for them to function considerations could be offered that would on their own. They often consider thebene- prevent us from legalizing the killing of fits of continuous medical intervention to be others who may be a financial liability to outweighed by the physical suffering and society and who are living the kinds of lives mental anguish produced by the invasive people consistently say they would not con- procedures necessary to keep them alive. sider worth living? There is no adequate We should not permit humane, family-cen- means of safeguarding against abuses that tered medicine to be completely replaced by would move us from a policy of voluntary an intrusive technological science. active euthanasia and assisted suicide toward a policy allowing for mercy killing of anyone soci- Legal allowances. From this perspective, ety considers an unworthy burden. Remember, all states should give legal status to Living there is a short and easy slide down the

16 9 The Right to Die slippery slope toward the "euthanasia" policy Underlying Principles and Assumptions adopted by Nazi Germany. What started out 1. Once the respect for human life is so with a few doctors acting in the name of low that an innocent person may be killed mercy ended up as the illegitimate and male- directly, even at his or her own request, com- volent use of nonvoluntary and involuntary pulsory euthanasia will soon follow. Just euthanasia primarily for the supposed benefit look at the example of Nazi Germany. Mil- of certain segments of society. Thus, we lions were "euthanized" because of their pre- should vigorously oppose any policy that ei- sumed racial, ethnic, mental, or physical in- ther decriminalizes or makes explicit legal feriority. Mass genocide began with a group sanctions permitting active euthanasia and of German doctors believing that some lives assisted suicide in any form. were not worth living and that those who Problems with assuring voluntariness. had to live them would be better off dead. Finally, even if we could be certain that a Once one kind of killing is rationalized we policy of voluntary active euthanasia would have stepped onto dangerous ground, where not have disastrous social consequences, such there are no arguments for excluding other forms of euthanasia. For this reason, active a policy would be impossible to implement. euthanasia under any circumstances must be By adopting a paternalistic stance in order to condemned. protect against violations of individual rights, both the state and physicians must evaluate 2. Those who advocate voluntary active decisions made by patients under their pro- euthanasia must acknowledge the very serious potential for abuse in its application. tection and care.It is not always clear when Many people who are burdened by their a person's decision to end his or her own life ailing relatives would attempt to describe is a free and rational one. A patient who is acts of cold-blooded murder as acts of com- terminally ill, in constant pain, chronically ill, passion. Even if active euthanasia were mor- or physically disabled to the point of being ally permissible in certain cases, we must unable to live under his or her own power is guard against its legalization because it would bound to be depressed. The desire to cease be almost impossible to ensure its just ap- being a burden on others and to gain at least plication. temporary relief from the anguish or humility 3. The elderly and infirm in our society of daily living may prompt a request for have every right to expect to be cared for by death. Hoping to spare their loved ones the others when they can no longer care for pain of seeing them endure a prolo. .6ed dy- themselves.If we do not rigorously oppose ing process and anxious to relieve their rela- legalization of active euthanasia, it might tives of further financial burdens, some may come to be expected that one who will need ask to die only out of concern for the well- long-term care or a great deal of expensive care should call for the doctor and demand being of others. Allowing people to have death. Legalized active euthanasia would their lives actively ended will only foster the make all of our lives less secure. The right perception, often motivated by prejudice, to die should not be replaced by a duty to that certain lives are not worth living. The die. result would be increase(' pressures to ask to be killed even if the patient doesn't consider 4. Keeping people's bodies functioning on machines often represents the ultimate life excessively burdensome for himself or misuse of technology. Technology now per- herself. mits us to maintain physiological life long r

17 The Right to Die past the point when a human being possesses important in the process of deciding whether those characteristics essential to being a per- to provide life-saving treatment. According son namely, a conscious life consisting of to the law, even when a patient is incom- self-awareness, rationality, thoughts, feelings, petent the surrogate should take into account and desires. The person has ceased to exist. knowledge of the patient's feelings and de- It is a violation of the right to die with digni- sires before incompetence. ty to keep the person's body alive using arti- 8. The right to refuse treatment is basic ficial means. and fundamental, as a part of the ;ght to 5.Underlying all of the moral principles privacy. On the same ground, the right to within the norms of practice adapted by phy- refuse treatment is accompanied by the right sicians is the principle of respect for life. to have treatment discontinued. This is significant since more than 80% of 9. Some patients have permanently lost Americans die in hospitals. The Hippocratic consciousness and cannot benefit from having oath, developed by the Greek physician Hip- their lives sustained. Withholding treatment pocrates in ancient times and still taken by in these cases violates neither obligations to doctors, includes the pledge, "If any shall ask society nor the individual. The thity to pre- of me a drug to produce death I will not serve life should not be interpreted as the give it, nor will I suggest such counsel." duty to preserve every life at all costs. Therefore, active voluntary euthanasia is contrary to one of the basic tenets of the 10. There is an important moral dif. medical community. A policy allowing physi- ference between administering pain medica- cians to perform active euthanasia would tion in order to lessen suffering, with tb e severely undermine the trust that must be at knowledge that the cost may be the hasten- the basis of a good doctor-patient relation- ing of the patient's death, and killing a pa- ship. tient in order to end the suffering.In each case the patient's death is brought about 6. There is a moral consideration sup- sooner than it would have occurredother- porting a law that permits letting some pa- wise. But, in the first case, the patient's tients die a natural death while it prohibits death is a foreseen but unintended conse- the humanitarian killing of patients. Con- quence of pain relief.In the second case, sider patients who have been wrongly di- however, the patient's death is clearly in- agnosed as hopeless: some of them will be tended as a means to the end of halting the able to survive even when treatment is suffering. While the iecond is morally for- ceased in order to allow a natural death. bidden, the first is not. Others will be able to survive only if treatment is continued. Allowing patients to die will lead only to preventable deaths of people in the second category, whereas permitting active euthanasia will also lead to some preventable deaths of members in the first category. Allowing active euthanasia under the law will therefore lead to the deaths of some who could otherwise have beensaved. 7. The dying more often feel in need of comfort than of treatment, and can best judge their own interests and needs. The patient's interests and desires are the most

18 The Right to Die Position 3Both mercy killing and allowing patients to die by withholding life- saving treatment should be legally prohibited, even when requested by those who are competent and terminally ill. All human life is precious and should be ever, even though the courts may point to a preserved at all costs.Life should be cher- legal distinction, there is not always a moral ished despite disabilities and handicaps. We distinction.Decisions to commit suicide live in a society that values beauty, youth, made by competent adults usually involve a fitness, and power, it is no wonder that peo- judgment along the following lines: 'The best ple without these would regard their lives as conditions I can hope to live under in the no longer worth living. These social preju- future are so bad that it would be better to dices along with the lack of financial aid and have no life at all." But this is exactly the counseling for many terminally-ill and severe- same sort of judgment made by many of ly handicapped patients would understand- those who decide to forego treatment. Their ably lead them to consider requesting death. refusal of treatment is the means they use to Instead of continuing to abandon these in- end their lives when conditions become so dividuals by giving them permission to die, bad that life is no longer considered worth we should make an effort to create a caring living. They would not have died now except and supportive community for them during for their refusal of treatment. Just as those the time they have left.In this context, per- with terminal diseases can end their lives by haps they would view their lives as valuable. taking an overdose of medicine, they can also commit suicide by not allowing someone The potential benefits of life-sustaining to save them, While we should respect the technologies. Respect for a person's autono- freedom of others, no one has the right to my should not be allowed to take precedence use that freedom against himself or herself over respect for life. Many doctors and pa- by destroying human life, even if it is one's tients mistakenly believe that when there is a own. great deal of uncertainty with respect to the value of a given treatment that it is somehow The changing definition of "extraordinary better not to initiate the treatment than to treatment." We are already on the slippery start it and have it withdrawn The result is slope toward mass murder that people fear. that patients who fear life-long dependency Only a few years ago food and water were on machines refuse treatment with the con- considered basic necessities of life to which sensus of the physicians. The effect is the everyone had a right. Now, the medical and denying of life-sustaining treatment to some legal communities have arrived at a point at patients who could have been benefitted. which even nutrition and hydration are con- Doctors, patients, and their families should sidered forms of extraordinary treatment that be much more willing to try therapies such can be removed upon request. Allowing as ventilator support. people to exercise what they consider to be Refusing treatment vs. suicide. Further, the right to die with dignity by refusing "heroic measures" has led to some very grue- the foregoing of life-support in many cases is some, undignified deaths. Unless we value simply another form of suicide or assisted all life, regardless of the conditions under suicide. The courts have attempted to distin- which it is lived, we will continue our slide guish refusal of life-sustaining treatment from into barbarism. suicide by arguing that in foregoing treatment the disease, as opposed to a self-in- The obligation to sustain life if at all flicted injury, is the cause of death. How- possible. Though it may seem even more The Right to Die cruel to suggest that there is a duty to live the suffering are many times moved to great no matter what the quality of one's life, ev- acts of charity and kindness. erything in life has a purpose. Suffering may 5. Death is a worse evil than suffering. seem pointless and is certainly difficult to endure, but we shouldn't give in to the temp- 6. Many patients who have signed Living tation to end life when it can still be pre- Wills did not get the natural, dignified deaths served. Life should be maintained regardless they were looking for.Patients don't under- of the cost, the person's physical condition, stand that exercising the right to refuse treat- or the chances of recovery. Adying person, ment often condemns them to death by de- after all, is still alive. And where there is hydration, vomiting, organ failure, and suf- life, there is hope. We have all heard stories focation. These are not easy deaths that al- of "terminally ill" patients who have miracu- low one to "go gently into that dark night." lously recovered, despite the most discourag- 7.In many cases, there is no distinction ing prognoses. This demonstrates that it is between refusing life-saving treatment and not for individuals or their physicians to de- suicide or assisted suicide. cide when a person shall live and when a person shall die. Doctors have no right to 8. Mercy killing and allowing people to play God with people's lives. die when their lives could be prolonged will lead to the erosion of resources directed at Underlying Princ iples Ad Assumptions cures. 1. The sanctity of life is not overridden 9. The state plays the role of parens by a person's suffering, indignity, or even a patriae, through which it serves as guardian person's own wishes. Life is intrinsically to the young, retarded, indigent, incompetent, valuable. Any intentional taking of human and others who cannot defend their rights. life violates the person's right to life, even if hi this role, the state should dictate that if the person no longer considers life worth the courts and medical community are in a living. position to err with respect to the best interest of patients, then it must be on the side 2. Doctors have no right to play God of life. with their patients' lives by deciding who will be allowed to live and who must die. 3. Doctors have sometimes been mis- taken in declaring a person terminally ill or irreversibly comatose and claiming that there is no hope of a recovery. To have allowed these patients to die by removing them from life-support systems or to have killed them because their condition was "hopeless" would have meant a tragic shortening of meaningful lives. We can never be certain that a patient will not recover. Therefore, we must do whatever we can to preserve that possibility.

4.Allowing people to suffer may seem like an evil that could never be justified, but tragedy often brings out the best in people. Those who are suffering can serve as exam- ples of courage. Those who are witnesses to 23 20 e Right to Die Glossary

Advance medical directive. A document pro- Competent. Capable of making decisions on duced by a competent individual that is specifical- one's own behalf. Competency allows a patient ly addressed to the person's physician or that the right to forego treatment even when the appoints a legally designated agent for health medical profession or society would judge the care matters. This document specifies the per- decision and reasons for the decision irrational. son's desires regarding medical treatment if he or Durable Power of Attorney for Health Care. A she were ever incompetent and unable to speak legal document that names an agent who will for himself or herself. make health decisions on the part of an indivi- Autonomy. The concept that holds that a com- dual who becomes unable to express wishes for petent patient is entitled to decide whether to be himself or herself. a patient and to make important decisions about Informed consent. Common law dictates that treatment. before any person may touch another person's Beneficence. Acting to benefit patients by sus- body, he or she must have consent to do so. taining life: treating illness.Health care pro- This principle, which is related to the right of viders are to pursue only treatment that con- privacy and the right to prevent the invasion of tributes to the well-being of their patients. The privacy, is applicable to the physician-patient principle of beneficence states that the physician relationship since treatment of a patient usually has a legal obligation and a moral duty to use involves touching. only those treatments that would benefit the patient.If a particular medical intervention, such Living Will. A document produced by a comas resuscitation, is not in the patient's best in- petent individual stating his or her wishes regarding medical care if he or she wele to become terest, the physician is morally free (and may be incompetent and unable to express his or her morally obligated) to withhold or withdraw medi- desires for health care. cal intervention. Persistent vegetative state. A chronic state of Best interest.If the incompetent patient has unconsciousness caused by overwhelming damage never been competent, or if the patient was once to the brain. The body continues to awaken and competent but never expressed wishes about sleep cyclically, but there is no cognitive function terminal care, it is meaningless to speak of ex- or ability to respond in a learned manner to tended autonomy. In these cases it is recognized external events or stimuli. that a surrogate ought to attempt to serve the best interest of the incompetent. The courts do Substituted judgment. A legal standard in which not normally permit substituted judgment when a patient's surrogate attempts to make the health there is no information about the patient's pre- care decisions that the patient would make if the ference. Only the best interest standard may be patient were competent. Substituted judgment is applied. based on a patient's own values as best as can be determined and may differ from best interest. Chronic pain. Pain over a long time span, usually of an incurable, underlying cause. [These terms and definitions are excerpted from a more extensive glossary in: David E. Coma. An acute loss of consciousness that usu- Outerbridge and Alan R. Hersh, M.D., Easing the ally consists of a sleep-like state from which a Passage: A Guide for Prearranging and Ensuring a person cannot be roused that may be followed by Pain-Free and Tranquil Death via a Living Will, varying degrees of recovery or that may result in Personal Medical Mandate, and Other Medical, severe, chronic, neurological impairment. See Legal, and Ethical Resources (New York, NY: also persistent vegetative state. HarperCollins Publishers, 1991), pp. 141-146.]

in sickness and in health,more pee* are taking life's biggest decision away from doctors and into their own hands

Marie was dying. Her 69-year-old body, wastedbut now it's not just doctors and by incurable emphysema and inoperable lung patients," Ruth Macklin. professor of bioethics at Albert Einstein Collegeof Medicine in cancer, could no longer function on ita own. As New York City, says. 'Mere her family stood by her hospital bedside are hospital administrators, in- on ahouse attorneys and riskmanagers .. . These are the people who hot summer morning, the doctor suggested are really in control." To circumvent that tangled hooking her up to lifesustaining equipment. bureaucracy, to avoid the crushing burden of extendedillness, many people Marie looked beseechingly at her daughter Rcee. "Whatdo you now consider the possibility of taking lifeanddeathinto think?" she asked. "No, Mom." Rose answered. Marie nodded.their own hands. The doctor bristled. "If that were my mother, I'd do it," hesaid. Bookstores can't keep "Final Exit" in stock; But the family stood firm. The following day Marie died almost 150,000 quietly,copies of the slim, $16.95 volumeare on order. Before "right to without the whirs, clicks and high-tech hums that formandie" entered the lexicon, before Karen electronic dirge for so many Americans Last Anne Quinlan, Nancy

week Rose explained why she was buying 0, sys 10* "Final Exit," Derek Humphry's controver- -"" sial new best-selling guide to suicide. "I don't 1 .0. want what happened to me to happen to my 'm children, to have a doctor try to dictate to ,

them," she said. "It's an outrage. When I'm , dying, I want to be in control." L._ Whose death is it anyway? More andmore peoplewhether they are terminally ill, know someone who is, or aresimply confronting their own mortalityare asking that question. To die in America is no longer simple. Before the 1950s, meet patients died at home. Now they may spend their final days (or months or years) in a hospital or nursing home, often attached to sophisticated ma- chinerythatcanextendeventhemostfragile life. "Doctors have always been in control,Quill expiores bou7ati:ri:AsCnacta's yatthe Supremreourt

40 NSV/SVMSZ : AUGUST 25, 1991 BEST COPY AVAILABLE not wantshould you no longer be able to exprem your wishes. Its legal limits varr, fill in one for the state in which you live. lisellisCare Pray designates an agenta friend or family memberto act for you in health-care matters. It is often included within a living will and, like it, may have limited powers. For example, it may cover only terminal illeees, which would not include a coma or Alzheimer's disease. Milk Pew sf Attorney he Nada Gust a more inclusive document that penults your agent to set for you in most healthcare matters, including those you might not have considered. Most Americans-84 percent, according to a 1990 Gallup pollsay that if they were on life-support systems and had. no hope of recovering, they would want treatment withheld. Like diabetics or heart patients, they can purchase Medic Alert bracelets, but theirs are emblazoned LIVING WILL/DO NOT muscular.. "There has been an extraordinary decline in trust between physicians and patients, and patients and hospitals," says David Rothman, author of "Strangers at the Bedside" and professor of social medicine at Manhattan's Columbia College of Physicians and Surgeons. "People don't believe that the hospital will do what they want." Under the full glare of the media, courts and medical journals are debating right-to-die decision& Says Dr. Robert McAfee, a Portland, Maine, surgeon and vice chairman of the American Medical Association's board of trustees, "Our social contract is to sustain life and relieve suffering. But sometimes these ideals are in conflict." They were for Dr. Timothy Quill, an internist in Rochester, N.Y. Last March, in The New England Jour-

nal of Medicine, he wrote movingly of how he I helped a leukemia patient stockpile herhitu- ratassoshecould take her own life:"I[hadlan unenyfeelingabouttheboundariesIwasex-

ploringspiritual, legal, professional and I personal. Yet I also felt strongly that I was setting her free to get the mostout of the time ROOM IANCIMLAN she had left, and to maintain dignityand con- Cruzan and Dr. Jack Kevorkian became fa- trol on her own terms." Last month a Roches- miliar names, "Final Exit" would have been ter grand jury refused to indict Quill on unimaginable. Only 41 percent of the re- criminal charges, including manslaughter. spondents in a 1975 Gallup poll said they Still, some worrythat patients maynot make believed that someone in great pam, with informed choices about when and how to die. "no hope of improvement," had the moral "I feel a great deal of discomfort about how right to commit suicide. By 1990, that figure comfortable people have become with (eu- had risen to 66 percent. Derek Humphry, thanalia)," says Carol Gill, director of psy- president of The Hemlock Society, a eutha- chological research at the Chicago Institute . nasia orgamzation founded in 1980, thought of Disability Research. "I take a very suspi- the time was right for a "responsible" sui- cious view of 'voluntariness' in these issues." cide manual. Though "Final Exit"is We may never be able to codify the straightforward, it is not an emotionless di- complex ethics of medical technology. There rective. "I wanted it to say, 'Be considerate of others, go carefulare, however, changes afoot A new federal law, the Patient Self- with your life and other people's feelings'," Humphry says. ADetermination Act of 1990, goes into effect this December. it will man whose ailing, elderly parents committed suicide afterrequire hospitals participating in Medicare or Medicaid to ask reading "Final Exit" wrote to Hurnphrr "For what it is worth,all adult inpatients if they have "advance directives" such as we thank you for providing accurate information and advice."living wills. In Washington state, legalized euthanasia is a Though "Final Exit" proposes an extreme measure for end-posaibility. The November ballot will carry an initiative with an ing life, it speaks to a growing concern of most Americans. With "aid in dying" provision that would allow doctors to help the continuing advances in medical technology, the proepect ofmentally competeterminally ill die. Patients could request being kept aliveperhaps insentientby machinery is real help in writing at the timethey want to die. Twowitneeses would and frightening. About 1.3 million Americans die annually in have to certify that the request is voluntary. hospitals, hundreds of thousands more in nursing homes; many Most of us have some choice in how we live, certainly in how end their lives with a negotiated death (page 42). More and we conduct our lives. How we die is an equally personal choice more people are uking what they can and should do now to tryand, in the exhilarating and terrifying new world of medical to ensure a dignified, humans death. There are several docu-technologyperhaps almost as important ments which can help, but the laws governing them are patch- KATRIIIR MIMI with LARRT WILSON sod RAT SAWMILL work. Speak to a lawyer, a doctor and your family. ill Nor leirk, DANIEL GLICK Warkingeon. Mu Ilk outlines what medical treatment you wantor do PATRICIA Kt NO Claw Pismire arnd Amer mons

NIWSWIRL : AUGUST 21. 1151 41 BEST COPYAVAILABLE CHOOSING DEATH

In three weeks in a Boston hospitals intensive-care unit, three families struggle with the meaning of loving enough to let go

completely collapsed, hisI _ligs were laboring to inflate on their own, his heart was weakened by Doznenic Ponzo's fi-a coronary during or soon after the gallbladder surgery. nal journey began It all happened with such numbing swiftness. Just two weeks at 3 a.m. one dayafter his predawn agony, Ponzo's medical options were dwin- last May, when hedling. As his hope for life faded, replacing it was not the awakened athispeaceful certainty of death but the terrifying unknown of East Boston homedying. His body could not tolerate more surgery. Although with a sharp pain in his side. poisonous wastes were building up in his system, dialysis had to His visit to the local health clin-be halted because it triggered his angina. He was slipping in ic turned up a serious gallblad-and out of consci.Jusness; soon his lungs would be no more able der problem, and soonafterto gather in oxygen than a punctured balloon. Ponzo's wife of 31 Ponzo found himself in one of theyears was summoned to a tiny "family room" outside the 12 private rooms at the Medical where three doctors and a nurse waited for her. "Is he Intensive Care Unit (MICU) atdying?" esker'. Adeline Ponzo, 67, as soon as they sat down. "It Boston's Beth Israel Hospital.looks pretty glum." replied Dr. Joel Snider, Ponzo's personal His gangrenous gallbladder hadphysician. For the next 20 minutes, the doctors delivered the been removed, his kidneys hadsame fundamental message in many different ways: without massive and heroic intervention, her husband would almost certainly die within 48 hours. They counseled her not to request any extraordinary measures that, as they put it, would only I have decided prolong his misery. Grasping for the ungraspable, Mrs. Ponzo asked, "Do you mean just let him go?" to end'inv The doctors explained that there were no reasonable medical options. A ventilator to breathe for him, drugs to support his life as I do not blood pressure, e!ectric shocks to jump-start his sputtering heart might keep him alive for another week or so. But to what want to live end? The best course, they said, was to keep him comfortable and permit him a peaceful, dignified death. "We'll do everything short of 'everything'," promised Dr. Scott Weiss, a like this. I pulmonary specialist and the attending physician on the MICU that month. Weiss, whose candor and forcefulness at times doii't want to make him appear brusque, assured her that it was the right decision. "It may be for you, doctor," Mrs. Ponzo said softly, ii.fake more in sorrow than in anger. "But he's all I have." Early the next morning, the cloud seemed to lift from Ponzo's deal (0 this. mind, and for a brief few moments he saw his wife, and perhaps his end, with a cplm lucidity. They exchanged final "I love yous." "I just held him in my arms," Mrs. Pon= said. "I took off his (oxygen] maskhe didn't need it anymoreand held him and held him until his final breath." It war a good way to die, as dying goes, for sometimes it goes

MOOS IT OA IMAM POO IMPOWINIC NZWSWEEK : AUGUST 26.1991 43

25 " 2 illAmeivalisaiL.12111. NLeat.

40121 - s% But there is a danger m not discussing. If the patient and family do not clearly state their prefer- ence, doctors are obliged by Hippo- horribly. "A peaceful death." Weiss said softly as he led internscratic oath to err on the side of intervention. One distinguis' and residents past Ponzo's closed door on morning rounds a fewphysician who became a patient in the unit requested they do hours later. It could even be counted a sort of success. Ponzo did "everything possible"except snake tubes down his throat and not suffer the outrage of "people sticking needles in {him} andinto his veins. Since "everything possible" includes intubation thumping on (his] chest. That's a violent and brutal way toalmost by definition, the MICU staff followed his first request depart this world," said Weiss to the interns and residentswithout caveat. He died two weeks later. Tubes stuck out of gathered around, and to a reporter who would spend 21 straight every orifice of his body. days in the unit, seeing and hearing how doctors, nurses, patients and relatives wrestle with the siren of high-technology Experiences like that push the MICU staff to help family medicine that offers both hope and peril. If there is a philosophy members reach the most difficult decision they will that unites Beth Israel's staff, it is that just as tubal feeding, or ever face. Their mandate is to spare the relatives the surgery, or a ventilator is a medical option, so is death. "You sense that they bear the entire burden of the decision have a responsibility not to drag out the dying," says Weiss. "I and its outcome. "It's important not to say, 'What do don't believe in euthanasia. But I don't think we're here to do you want?' " says Weiss. "It's not fair. Deciding is a heavy burden things that are inappropriate. Some doctors think that once you to lay on someone," and one that even professionals for whom

invoke the high tech, you can't get off the train. But you ought to I death is an intimate acquaintance have trouble shouldering. be able to opt out." Sometimes the staff gets lucky, as luck is measured in the The option that more and more patients, and their families, MICU. Sometimes they have an exceptional case, in which a fully demand is to leapfrog dying if death is all that awaits. Whilealert patient questions a prolonged dying. Helen Reynolds, 63, many people choose death, no one chooses dying. Although had undergone operations in January and April to repair and there are no national statistics, anecdotal evidence suggeststhen replace a heart valve that was not permitting a smooth flow that more than half of hospital deaths follow a decision to limitof blood. But by May her feet had turned the color of overripe or withhold life-sustaining treatment. This is not suicide, oreggplants, their mottled purple black an unmistakable sign of euthanasia, for both of those mean ending life. It is. rather, agangrene. The consensus was that, at best, she woul lemerge from desire to end dying, to pass gently into the night without tubesBeth Israel's MICU a "pulmonary cripple," almost surely sen- running down the nose and a ventilator insistently inflatingtenced to live out the rest of her life in a chronic-care facility, lungs that have grown weary from the insult. perhaps forever yoked to a ventilator. But Reynolds had no inten- A so often the life leaves few clues to how the dying shouldtion of giving up. Leashed to the softly whooshing ventilator, she come. The Ponzos had never discussed what to do in such awas prepared to offer her very flesh if that would appease Thana- situation, even though Domenic had a history of diabetes, chron- tos. In June she chose to have first her right leg, and then her left, ic pulmonary disease, high cholesterol, obesity, peripheral vas- amputated in hopes of stabilizing her condition. The doctors were cular disease, hypertension, high blood pressure and angina. A skeptical about the surgery, but deferred to her wishes. pack-and-a-half-a-day smoker for 50 years, Ponzo, 69, experi- The gutsy decision was very much in character. Reynolds's enced shortness of breath after walking a single block. Adelinefirst husband had committed suicide by strangling himself in Ponzo, who had worked as a medical assistant for the past 15 1971. To support two teenage daughters still living at home and years, would sometimes raise the subject of death and dying, but to hold onto her home in Norfolk. Mass., she worked three jobs: her husband would shush her. "If I brought up anything to doin a paint shop at a Corning Glass Works plant and waitressing with it, he'd just say, 'I don't want to discuss it.' He's not a weak- at two local restaurants. She had to stop working when her

type person, but he just couldn't discuss this type of thing." heart problems began, in 1978. Between the first and second' 1 =iMMI911.61 I 44NEWSWEIK : AUGUST 26.1991 2!'' 2 3BEST COPY AVAILABLE heart operations. she lived in a rehabilitation hcepitaL oxygenwould try to change her mind.declined firmly. "I'm nottrying to tank beaide her and. despite chronic breathing problems, cheer-talk you out of it," Gayle assured her. "It's been your deon all ily chatted with her visiting daughters and 83-year-oid mother down the line. Whatever you decide is OK. That doesn't mean we until long after she should have been resting. won't be sad, but it's OK. I don't want you to have e.. : anxiety of Even when the April heart operation at Beth Israel forced herworrying about if we're going to be upset with you. I don't blame onto a ventilator, she never withdrew from what herlife hadyou." Asked the next morning how it had gone with her daugh- become. She delighted in the MICU nurses doing her hair andters, Reynolds mouthed."Not too well." makeup. When doctors turned down her television so they could Yet her daughters had expected the decision weeks before. talk during their morning rounds to her room, she gestured for itWhen Reynolds chose to have her second leg amputated, Gayle to be turned back up immediately after they left. In May sheandrecalls, "I thought at this point she would say, 'Enough already, her family celebrated her 63rd birthday, with balloons, flowersI'm tired.' I wouldn't blame her. I'm tired too. But if ahe wants and a two-foot-tall ware BIRTHDAY FROM ALL OF us card. thereon the surgery, that's fine. We'll support whatever she wants." the ninth-floor MICU with its picture-window view of Boston's The doctors understood Reynolds's decision, but they could western suburbs. She occasionally watched videos that thenot grant her wish right away. "We're going to string this out a MICU nurses brought in. It was during one incongruous double couple of days," intern Evans tolcl the medical team. "I want her featurethe elegant "Room with a View" and the teen dance to tell me the same thing many days in a row." Explained Dr. flick "Shag"that nurse Ruth Scanlan told her. "Helen. it J. Woodrow Weiss, director of the MICU, "We need to be certain really stinks. You know if you don't want all this stuff done, we this isn't a whim." Reynolds did reiterate her decisioncount- can stop it. We can let nature take its course."Reynolds shook less timesto Evans, to Weiss, to her family and to psychiatrist her off. She knows what I mean. Scanlan thought She wants toEran Metzger. It was his task to determine whether Reynolds live. Asked how she so stoically weathered every indignity done was competent and whether her decision was based on "appro- to her, Reynolds replied simply, "I want to get home." priate" rather than "inappropriate" depression. But then Reynolds uncharacteristically began talking about her pain. On that Sunday afternon in J une, a nurse beckoned in- n Thursday evening, Woody Weiss, Evans, Metzger tern Dr. Randall Evans. Evans, a graduate of theUniversity of and Reynolds's primary nurse Judith Ayotte met New Mexico Medical School who planned a career in the critical- with her three daughters, mother and a grand- care field, was immensely popular with the nursingstaff for his daughter. "What she has told us basically is that she cordial and sympathetic manner. But, nnlikp the MICU nurses, doesn't want to be kept alive, that ahe doesn't want he had difficulty reading Reynolds's lips (the ventilator made itto0 continue going through all that she's gone through," said impossible for her to speak aloud), and asked her to write down Weiss. "Our feeling both ethically and legally is that we should her request. Laboriously, she scrawled 16 words on the note pad: respect her wishes." The best way was to remove her from the "I have decided to end my life as I do not want to live like this." ventilator, lines and tubes. The principal concern was pain and Evans asked her if she knew what her decision meant. She discomfort. "She told meshe'd just like to go tosleep," Gaylesaid. pointed to her head to indicate she wasn't crazy. Asked if she "She's tired. She's had it." The doctors said they would give her might change her mind, she shook her head vehemently. As mother morphine for pain. The only question left was when to Evans prepared to leave, Reynolds mouthed a final wish: "Iremove the ventilator. Reynolds rejected out of hand her fam- don't want to make a big deal out of this." ily's suggestion that she might like a few more days to say her Reynolds broke the news to her daughters. Maureen Labriegoodbyes. Her patience and endurance were at an end. She emerged from the room in tears. "I willisurprised she stuck it outwas ready. so long," she said. "I think she hung on morefor us than herself." "I want you to know I admire you a great deal," Evans told Gayle MacPherson, her eldest daughter, listened and asked if she Olaa..1....,Wal wanted, to see a priest. Reynolds, apparently afraid that the priest

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NEWSWEEK : AUGUST 21.199145 UST COPY AVAILABLE her as he prepared to remove the ventilator ma June 20, fourvisited Richarifaithfully during his stays at Beth IsraeL AI the days after her imploring note to him. 'We're going to help youMICU Richard relished his favorite lunchmounds of do what you want." "Thanks for listening to me," ReynoldsHiagen-Dasswasheddownwithgingerale. Hesaidhe'dstopped whispered. The family gathered round. "Life won't be the mmedrinking a few months before. but still the staff found it hardnot without you," her mother said. In a few hours Reynolds drifted to view the fortyish lab technician as a victim of himself. In a off to sleep, breathing easily. Her family headed home. prominent big-city teaching hoapital like Beth Israel, medical Reynolds was undoubtedly the most surprised and unhappycare is plentiful: it's sympathy that has to be rationed. person of all when she awoke the next morning. She managed a Now medicine could not offer much, either. Gastroenterology laugh at the bitter irony, and clung to life for another threefellow Dr. Deborah Proctor broke the news to Richardon a glori- days. She died early on Monday, June 24. It had taken a littleous Friday afternoon, as sunbeams danced on the off-white more than a week for her wish to be granted. linoleum floor. They had rtm out of options, she said. Surgeryto The hovering presence of death breeds a steely attitude on insert a shunt in his liver to carry blood throughwas out of the the MICU. Nurses and doctors regularly declare that they wantquestion; the cirrhosis had so debilitated him that he would "DNR" (Do Not Resuscitate) incised on his or her chest. "Butlikely die on the operating table. He had earlier tested positive until it's you or yours," says Miriam Greenspan, chief nurse, for HIV, whichcauses AIDS; that made him a poor candidate for "I'm not sure you really know." surgery. "Richard, thereareno options for you left," Proctortold Even patients, or families, who think they know often do not.him."We can't keep pouringblood into you. You're goingto die." The most common shock is finding out that not deciding is, in His face betrayed no emotion. "If that's witat's going to fact, deciding: if a family or patient does not refuse a respirator,happen, that's what's going to happen," he finally answered. feeding tube or other life-sustaining measure, the doctors canProctor said she needed his consent for a DNR order. He agreed. not and do not withhold it. And few people She asked if he accepted that there would be are prepared for what follows. "Too often," no more transfusions or pitressin. If his says Greenspan, "it's only after we've (atart- esophageal veins ruptured again, the staff ed life support] that the family truly under- would not staunch the bleeding. He would stands and says, 'Oh my god! That's what "do quickly lose consciousness. He would bleed everything" meant'." That's why the MICU to death. staff regards "living wills" as less than per- Richard understood. He acquiesced. fect: these documents stipulate what a pa- "I do mind dying," Richard said soon after tient will and will not want, but they cannot his talk with Proctor. "But I haven't any anticipate the grim complexities of disease. choice. They explained i all to me, and there Perhaps a despised ventilator will be needed wasn't any other decision they could make. for only a few days, perhaps tubes for only a My life has come to a point where it can no few hours. It may be better to designate a longer succeed." The doctors, too, empha- health proxy, someone who understands the sized the uselessness of it all. "It's a question patient's attitudes toward dying. The proxy of futility," said MICU resident Dr. Ira Oliff. is charged with making medical decisions "We don't keep corpses on ventilators ei- when the patient cannot, and can weigh the ther." Scott Weiss agreed: "He's had a good specific circumstances of the illness and the run for his money." choices available. The proxy's legal standing Richard spent the weekend preparing for varies from state to state. But designating death. His roommate came ior with pictures one may avoid the added tragedy of deathbed of Richard's home, dog and garden, as if to fights. Says Weiss: "The daughter who's diatract his eyes from the pitressin IV whose been visiting the father every day for years imminent removal might kill him. They might say, 'I want to do what's best for him.' each knew that such a moment might come, The son who hasn't visited in five years flies in and says, 'I'm not said his rooinmate, but had never discussed it."I guesswe should going to let you kill my daddy'." have," he said. "But it's his decision, and I support it." Richard Sometimes the doctors themselves do not knownot about himselfhad no desire for longgoodbyes. There wu no one else he whether death will come, but when. Richard (not his real name)wanted to see. He was estranged from his family. "Ifwe're going certainly seemed to have almost no time left when he returned to do it," he said. "let's get it over with." to Beth Israel in June for the 41st time since March 1988. An Monday dawned gray and overcast. Doctors removed the N. alcoholic, Richard suffered from cirrhosis of the liver and itsRichard did not look like a man consumed with his own mortal- consequence, esophageal varices. In this condition, blood isity. He watched Regis Philbin and Joan Rivers from the 12-inch unable to flow through the liver and detours in excessivescreen jutting out from the wall. The bleeding did not resume. quantities through the esophagus. There, blood vessels and Later that week Richard was transferred out of the MICU. veins unable to handle such a fiow continually rupture. He did get more bloodtwo unitsbut not to replace any lost by hemorrhaging: it was to boost his red-cell count. He was That's why Richard kept showing up at Beth Israel. Hegoing home. Ten days after his death sentence, Richard re- had received enough transfusions to refill a man 18turned to his roommate his garden and his dog. times. He had also received the standard treatment It was a sobering reminder of medicine's fallibility. Though for varices: a tube down the esophagus releases an there was still little doubt that Richard did not have long to live, agent that stops the bleeding. When his throat couldwhen it comes to predicting how long, "we're not that good and not tolerate the tube, Richard began receiving intravenouswe never will be," said Woody Weiss. Ric.hard knew that he pitressin, a drug that reduces the flow of blood to the overtaxedwould be back at Beth IsraeL "I just hope it's not too soon," he esophagus. Then he would go home until the next rupture. said. He had been delivered from dying, but death still beck- Their recidivist patient was amiable enoughsoft spoken, aoned. The next time, Richard would have to decide anew wheth- man who loved his dog and his flower garden behind his home aer to follow. short distance from Beth IsraeL He lived with a roommate, villa SitAsou BICILZT with MARS ST/ARO/WA Israel

THE NEW YORK TIMES WEDNESDAY, SEPTEMBER II, 1991 Cl2 Dutch Survey Casts New Light On Patients Who Choose to Die the doctor injects a large dose of Informal Standards By MA RUSE SIMONS barbiturates to bring on coma, following it with an injection of curare to Though current law calls for 12 soda w no Nut Yen Tinos stop the breathing and the heart. years' imprisonment for anyone who In the case of assisted suicide, the AMSTERDAM "takes the Ilfe of another at his or her REQUESTS from terminally doctor prescribes or provides a large explicit and serious request," no doc- ill patients for their doctors dose of barbiturates which the patient tor has been penalized in such a case to bring on their deaths takes with or without the presence of in more than two decades. Medical have been honored more the physician. experts say they believe the practice openly and tolerated more widely in As for the patients, 85 percent were is tolerated because it has wide public the Netherlands than in any other cancer patients in the final weeks of support, and because physicians have country. Yet after almost two dec- their life. The remainder included Independently established a series of ades of quietly accepting mercy kill- sufferers of AIDS, multiple sclerosis conditions that are believed to be ing or suicide as a patient's right, the or other forms of paralysis. Heart or. . widely observed. Dutch knew little about who was cardiovascular diseases, even when. These conditions require that the choosing to die, why they sought known to be painful and deadly, were request to die be made explicitly and death and who was helping them ob- only rarely a motive to choose death. preferably repeatedly by a fully con- tain it. The researchers said they were scious patient and that at least one Now researchers have begun to an- surprised to discover that requests to other physician see the patient inde- swer these questions, with sometimes die were less common among older pendently. Experts say that physi- startling results. Patients asking for patients. The average age was 63 cians will then apply euthanasia if the a doctor's help to kill themselves are years for men and 66 tor women, in. patient is terminally ill, has no hope typically cancer patients in their ear- both cases well below the average for improvement and Is subject to ly 60's who fear "dependence, loss of age of people dying at home. Eutha- physical or great mental suffering. dignity, humiliation and pain," a new nasia and physician-assisted suicide But earlier this year, the Ministry study shows. The physician who ap- were rare above the age of 75 and of Health, apparently acknowledging plies the euthanasia in most cases is very rare above 85, the researchers the practice, notified all doctors that the family doctor and most of such found. mental suffering is not an acceptable deaths take place at home, the study They said it was possible that older reason for assisting patients to kill says. people were better able to accept or themselves. Specialists believe the Men and women seek to commit tolerate the effects of disease. They main purpose of the letter was to suicide in about the same numbers, said further that the older generation protectpsychiatricpatientswho the researchers found, and people in might be less Informed or less asser- might not be able to make an in- their 70's and 80's are far less likely tive when it cOmes to reqUesting eu- formed choice. to seek death than those a few years thanasia. Among other key findings by the younger. Men and women requested eutha- researchers were these: The researchers, from four Dutch nasia or help in committing suicide at about the same rate. Among men, the In close to two-thirds of the cases, universities, studied people who re- doctors estimated their patients had quested euthanasia or help in suicide largest group suffered lung or bron- chial cancer and among women, two weeks or less to live when they from 1986 to 1989. Their study Is the asked to die. The authors noted that a first far-reaching investigation of an those with breast cancer made up the largest group. Close to 3 percent of considerable share, 10 percent of area in which reliable information is the patients, were thought to have a hard to come by, said Gerrit van der the men had AIDS. While no officialstatistics are life expectancy of three months or Wal, a public health inspector and one more, and that in thcae cases mental of the study's authors. available, the researchers said they had strong indications that doctors in suffering was oftenassessedas Euthanasia is explicitly forbidden greater than pain. by law, he said, adding, "It's a very the Netherlands help about 3,000 pa- emotional event for everyone and it's tients to die every year. This is less In 83 percent of the cases, the often done in secrecy." than half of the estimates for eutha- patients themselves first broached nasia and assisted suicide that have the subject of euthanasia, while in 10 Anonymous Questionnaires been widely accepted so far. Of these percent, the physicians first raised It To conduct the study, reported in 3,000 deaths, about 2,000 happen at In 7 percent of the cases, relatives or the current issue of the weekly Neth- home and close to 1,000 in clinics and friends first raised the possibility. erlands Journal of Medicine, the re- hospitals. Ur. van der Wal saki. In three-fourths of the cases, less searchers sent anonymous question- Cases in nursing homes, he said, than one month passed between the naires to 1,042 general practitioners. are few, no more than 25 per year. first and the final request to die, and The lower numbers in institutions, he in many cases death was brought on Among the 676 physicians who re- added, "may be because the number within a week OP less after the final sponded, 388 provided extensive de- of people treating a patient is larger request. tails of cases in which they had coop- and social controls are stronger.' One marked difference in the atti- erated to end a patient's life. Of these, But the research also indicated tude of the doctors showed up when a many had helped two or more pa- that the demand for euthanasia was patient'slife expectancy exceeded tients kill themselves. far greater than its application. The several months. When faced with a Mostdeaths had come about study showed that while doctors in patient with just days to live, doctors through voluntary euthanasia, which the home practiced mercy killing or more readily applied euthanasia. But the researchers defined as the physi- assisted suicide about 2.000 times a if life expectancy was three months cian personally killing the patient at year, they received at least 5,000 re- or more, doctors preferred only to hls or her explicit request. Usually. quests. alisf:_ist the patient in taking his own

a'tj BEST COPY AVAILABLE The New York Times Magazine, SundaySeptember 22, 1991 AiQUESIION OFMERCY Richard Selzer is the author of "Mortal Lessortr Notes on the Art of surgery" and "Imagine a Woman." a short-story cotlection. This article is part of a memoir to be published next year.

ALMOST TWO YEARS AGO, I RECEIVED A PHONE CALL from a poet I knew slightly. Would I. he wondered, be willing to intervene an behalf of a friend of his who was dying of AIDS? asks: If "Intervener "His suffering is worthy of Job. He wants to commit suicide while he still has the strength to do it." "Do you know what you're asking?" he helps his "I know, I know." "No," I told him. "I'm trained to preserve life, not end it. It's not in me to do a thing like that" "Are you saying that a doctor should prolong a misfortune as long as possible?" friend "There is society," I replied. 'There is the Law. I'm not a barbarian." "You are precisely that," he said. "A barbarian." His accusation reminded me of an incident in the life of Ambroise Pare,the die with father of surgery, who in the 16th century accompanied the armies of France on their campaign& Once, on entering a newly capturedcity. Pare looked for a barn in which to keep his horse while he treated the wounded. Inside hefound four dead soldiers and three more still alive, their faces contorted with pain, their clothes still smoldering where the gunpowder had burned them. dignity, can As Pare gazed at the wounded with pity, an old soldier came upand asked whether there was any way to cure them. Pare shook his head, whereupon the old soldier went up to the men and. Pare recounted in his memoirs, cut their throats "gently, efficiently and without ill will.'Horrified he still at what he thotitAt a great cruelty, Part cried out to the executionerthat he was a villain. "No." said the man. "I pray Gad that if ever I come to be in that condition. someone will do the same for me." Was this an act of villainy, ormercy? live The question still resists anretenng. Last year, a Michigan courtheard the case ot a doctor who supplied a woman with his "suicide machine" a

with himself? simple apparatus that al- occasion arise. If for myself, lows a patient to self-admin- then why not for another? ister a lethal dose of drugs "III think about it," I said. intravenously. Since then, it He gave me the address and BY seems that each day brings phone number. reports of deaths assisted by "I Implore you," said the doctors. A best-selling book, "Final Exit," written by the The conversation shifted RICHARD director of the Hemlock So- to the abominable gymnas- ciety, now instructs us in tics of writing, a little gossip. painless ways to commit We hung up. suicide should the dreadful Dotal I told myself. SELZER occasion arise. Even the must ideologically opposed must now hear the outcry of DIARY. JAN. 14, 1990 a populace for whom the My friend'sfriendlives dignity and mercy of a with a companion on the sev- quick pharmacological enth floor of an apartment death may be preferable to building about a 10-minute a protracted, messy and walk from my house. The painful end. doorman on duty is a former "But why are you calling patient of mine. He greets me 1991 me?" I &sited my friene, Warmly, lifts his shirt to show Copyright "I've read your books. It me his gallbladder incision, by the New York Times Company. occurred to me that you how well it has healed. might just be the right one." "You can hardly see it," he Reprinted by permission. I let the poet know that I say& That is the sort of thing had retired from medicine that happens when I leave five years before, thet I was my study and re-enter the no longer a doctor. world. The doorman buzzes "Once a doctor, always a me in. doctor." he replied. At precisely 4 P.M., as a r- What I did not till hlm was rallied, I knock on the apart- that each year I have comm. ment door. ft is opened by L., tied to renew the license that a Madeline, perhaps too allows me so proscribe nar- hamleame, man in his late cotics. You never know. ... 301. Vs recomise sack °M- Someday I might have need O" ea presences on the Yale of them es relieve pea or to gullPon. If. is an ordained kill myself mialay *cold Me enlister. lite tells me that Me 30 has made use al my writing!side on the sofa: boldingthat M herself will use Mrolder brother Imams Met Ileday al the ettolialltle et Yale. in his marmots. In the Whethands. A lethal dose of bar-his mama de Mstremeet?Is Eh% and So him it is aA day et aissin with stu- room, R. is sitting on an M-bitmates is Min maned byBut I ans a aim disgrace. He has earbiddesidents. MIMI& counlieling- valid's cushion on the sots. Aa doctor friend in Colombia. The Mee arm comptrato-Ft. to ten the others. His sis-He is iinpsecalsty dressed. shoal, delicate man, also inR. wants to be certain thatrial. Our voices drop. We ad-ters live neer his mother in his 30's. R. is a doctor spe- He is accompanied by a it will not fail, that someonemonish each other to be se- Medellin.Them are 12 woman. someone 1 know cializing in public health will be on hand to adminis-cretive, tell no one. Theregrandchildren. She will notslightly. He notices my sur- women'sproblems,birthter a final, fatal dose if heare those who would leap tobe alone. (He smiles at this.) prise. control,familyplanning, should turn out to be physi-punish. I suggest that R. ar- Had he always known be "ThisisM.,"hean- AIDS. He is surprisingly un-cally too weak to take the range for a codicil to his willwas gay? He discovered hisnounces. "She's all right." wasted. although Pala as arequired number of pills.requesting that them be noattraction to men at age I,He places his arm about her blank sheet of paper. HeHe also wants L to be withautopsy. but of course it was impoinwaist, exping that they gives me a brilliant snidehim, holding him. He asks have been does friends and around even white teeth.that L not cry. He couldn't confidantes for many years. The eyes do not participatebear that, he says. L says JAN.16 "She is the sister I have al- in the 'untie. L. and R. havethat of course he wili cry, Four in the afternoon. R. ways wanted." L. bends to been lovers for six years. that he must be allowed to.answers the door. He has kiss R. on the cheek. R.'s hair is close-cropped,L isafraid, too, thatitlost gram& His eyes are "Chthuirof You are wear- black; there is a neat lawn ofmight not work, that he willsunless, his gait totterim. He ing your new shirt." says L I beard. He makesgesturebe discovered as an accom-is id great pain, which he am alarmed by the presence aa if to stand. but 1 stop him.plice. makes no effort to conceal. of IL It is clear that she His handshake is warm and "I am the sole beneficiaryAs arranged, be is alone. L knows everything. We sit dry and strong. There is aof the will," he explains. L.is to return in an hour. The around the table drinking plate of chocolate chip cook-does not want to be alonebarbiturates have arrived tea. ies on a table. L pours tea.when the time comas. Hefrom Colombia. He shows "Ten me about death," L's speech is dipped, slight-has never seen anyone dieme the botties of tablets in says I.. ly mannered. R. has a His-before. (A minister? Has hethe bottom drawer of the "What do you mean?" panic accent; he is Colombi-never attended a death-dresser. A quick calculation "The details. You're a doc- an. bed?) "It has just workedtells me that he has well tor, you shouid know. What For a few minutes we stepout that way," he says, asover the lethal dose. The about the death rattle?" warily around the reason though reading my mind.arrhea has been umvient- "It has been called thnt." I have come. Then, all at once,Still, I am shocked at such ain. The Kaposte sarcoma is expiain about not being able we are engaged. I ask R.state of virginity. fulminating, with new le- to clear secretions from the about his symptoms. He We have a discussion. It Ls sions every day. lungs. tels me of his profound fa-about death as best friend, "I have always counted so "What sort of equipment tigue, the depression, the in-not enemy. How sensiblemuch on my looks," he says will we need?" tractable diarrhea, his ul-were the pagans, for whomshyly and withont the least "Nothing.Youalready ceratedhemorrhoids. Hedeath was a return to theimmodesty. "And now I have the diapers." has Kappa's sarcoma. Onlyspirit world that resides inhave become something that "R. has to die in diapers?" yesterday a new hesion ap-nature. One member of the no one would want to touch."sible to express it. Colom-I explain about the relax- peared in the left riaso-orbit-tribe vanishes forever, butWithout a pause, he asks,bia is intolerant of homo-ation of the bowel and uri- al region, the area betweenthe tribe itself lives on. It is a"What if I vomit the pills?" Isexuality. At 17, he went tonarysphinzters,thatit the nose and eye. He pointsfar cry from the Christiantell him to take them at aBogote to study medicine. would be best. to it. Through his beard I seeconcept of death and resur- regular pace, each with onlyFor six years he lived in an "I shouldn't have asked." another large black tumor.rection. a sip of water so as not to fillapartment with tour otherL seems increasingly ner- His mouth is dry, encrusted R. passes a hand acrossup too quickly. If necessary,students. There was closevous. "I'm terrified of the from the dehydration thathis eyes as if to brush awaywouid I inject more medica-camaraderie but no sexualpolice," he says. "I always comes with chronic diar-a veil. His vision is failingtion? "I have good veins," heexpression. It was a "quiet"have been. Should I see a rhea. Now and then hesoon he will be blind. Hesays, and rolls up a sleeve. Istudent'slife.After onelawyer? What if I'.s. caught clutches his abdomen, gri-coughs, shifts on the pillow,see that he does. There areyear of internship in a hos-and put in prison?" He be- maces. There is the odor ofswallows a pain pill. Heseveralneedlepuncturepital, he decided againstgins to weep openly. "And scoot. tells me that he has takenmarks at the antecubital fos-clinical medicine. I'm losing R. That is a fact, "I want to die," he an-all of the various experi-sa the front ot the elbow It was while working to- and there is not a thing I can nounces calmly. mental medicines without where blood has beenward a degree in public do about it 1" When he con. "Is it so bad?" relief of the diarrhea. Hisdrawn. One more would nothealth at Yale that he met Ltinues to cry without cover- "Yes, it is." entire day is spent medicat-be noticed. The year was 1983. Aftering his face, R. reaches out "But how can I be sure?ing himself and dealing "When?" I ask him. No lat-completing his studies, heto a hand to consoie him. On Tuesday, you want to die;with the incontinence. De-er than one month from to-was separated from L for "Look," I say. "You're not by Thursday, perhaps youspite chemotherapy, the tu-day. Do I want to choose two years, working in an- ready for this and, to tell the willhave changed yourmors are growing rapidly.date? R. rises with difficul-other city, although he re-truth, I'm not sure I am ei- mmd." His palate is covered withty, gets a calendar from theturned to visit L. frequently. ther." He nods to L, who helpsthem. He opens his mouthkitchen. We bend over it. There followed a three-year "Oh please!" R.'s voice is him to stand. The three of usfor me to see. Above all, he "Are you free on Feb. 10?" period when they lived to-a high-pitched whine of dis- go into their bedroom, wherewants to retain his dignity,he asks. "It's a Saturday." gether in New Haven. Short-tress. "It is only a matter of R., lying on his side, offersto keep control of his life. "I'm free." ly after they met. R. begana few minutes of misery. I his lesions as evidence. I seewhichheequateswith Feb. 10! There is a date! to feel ill, thought he had an would be dying anyway after that his anus is a great cir-choosingthetimeand I ask It. about his life. Heinfection. He suspected itthat." cular ulceration, raw andmethod of suicide. Soon hewas born and raised in Me-was AIDS. He told L at once L. pulls himself together, oozing blood. His buttockswill be unable to do it. dellin, one of four sisters andand they agreed to discon-nods to show that he under- are smeared with pus and "But death," I say. "It's sothree brothers. His mothertinue sex. Aside from mutu-stands. 1 begin to feel that liquidstool.With tender-final." had no formal education, butal caressing, there has beenmy presenceisputting ness, L bathes and dresses "I want it," he says again,she is "very wise." It is clearno sexual contact betweenpressure on him; it makes him in a fresh diaper. Evenon his face a look of longing.that he loves her. No, shethem since. R.'s death real, imminent. I though I have been sum-He wants me to promise thatknows nothing neither that "Itwasnotsexthattell him that 1 am ready to moned here.Ifeel veryI will obtain the additional he is gay nor that he is ill. He brought us together." hewithdraw. How easy that muds theintruder uponnarcotics that would insurehas written a letter to besays. "It was love." 1 lowerwould be. A way out. their privacy. And I am con-death, if needed. I offer onlysent after his death, tellingmy gaze. 1 who have always "You are the answer to vinced. to return in a few days toher that he loves her, thank-hesitated before expressing preyers," he says. "To We return to the livingtalk. R. urges me to think ofing ber for all that she haslove. him you are an angel." But room. L and R. sit side bymyself as an instrumentdone. In the family, only an L returns. It Is the firstto L I am the angei of death.

31 REST COPY MILIEU "Of Course. I Moo to what' My nights are ridden with return to discover the bodybe vicious. "No, YOU're tired, ever R. warts to do," hevisiemc I am in the bed- and call the clinic. It is mostand thers Mat." I long to give says. It is R. who turns mc-room with ft. We are sitting likely that a doctor willin to dm wave at relief that tical side by side an the bed. U. come to pronounce death. sweeps Wit me. But there is "If it is too hard tor you, is wearing only a large blue Of course, he will ask ques- R. L., I won't mind if yr a aredisposable diaper. The hot- tions, perhaPs notice some "What about R. and my not here with me." And toties of pills are on the night thing, demand an autopsy.promisor me: "L simply cannot he. Ifstand along with a pitcher In that case, L will show "Wie just won't tell him questioned by the police, heof water and a glass. R. him the codicil to the will. that you're not coming." would havetotellthe pours a handful of the tiny M. asks whether the codicil "The coward's way," I say. truth." I see that the lying tablets into his palm, then is binding. At the end of the "That's what we are, are- will be up to me. All thewith a shy smile begins to session we are ail visiblyn't we?" while, M. has remained si-swallow them one at a time. exhausted. lent. Because of the dryness of We go through the "script" his mouth and the fungal FEB. 11 L's word. In the bedroom. infection of his throat, it is FEB. 3 A phone call from L.: R. is R. will begin taking the pills.painfuL And slow. Our final visit. R. is worried"very much alive." He is at I will help him. L and M. will "You're drinking too much that because of the diarrheathe hospital, in the inter wait in the living room. water," I say. "You'll fill up he will not absorb the barbitu-sive-care unit. They have L.:"Will we be in thetoo quickly." rate. He hes seen undigested put him on a respirator, apartment all the time until "I will try," he says. What potassium tablets in his stool washed out his stomach. He he dies?" seems like hours go by. I tell him not to worry; I willis being fed intravenously. M. (speaking for the first Fromthelivingroom make sure. His gratitude is "I had to call the ambu- time): "Not necessary. We comes the sound of Mo- infinitely touching, infinitelylance, didn't I?" he asks. can go out somewhere and zart's Clarinet Quintet. R.him. I offer an alternative: sad. We count the pills. There"What else couid I do? He return to find him dead." labors on, panting, cough-R. could simply stop eating are 110 of them, totaling 11 was alive." L.: "Where would we go?" ing. When he has finishedand drinking. It wouid notgrams. The lethal doee is 4.5. M.:"Anywhere.For aone bottle. I open another. take too many days. Nei- He also has the remaining waUe to the movies." His head and arms begin tother L nor R. can accept Levo-Drornorantablets. I FEB. 15 L: "How long will it take?" wobble. I help him to liethis. L. cannot watch R. die have already obtained the The intensive-care unit is Me: "Perhaps all day." down. of thirst. There is a new vial of morphine and the sy- like a concrete blockhouse- L: "What if the doctors no- "Quickly," I tell him. "Weblack tumor on R.'s upper ringe. R. is bent, tormented,The sound of 20 resptrators, tify the police? R. has made don't have much time left."lip. He has visited the clinic but smiles when I hug him each inhaling and exhaling at no secret of his intentions at I hold the glass for him,and obtained 30 Levo-Dro- goodbye. its own pace, makes a steady the clinic. They have evenguideittohislips. Hemoran tablets. Suddenly, I "I'll see you on Saturday," wet noise like the cascade withheld pam medication be- coughs, spits out the pills. feel I must to test himI tell him. from a fountain. But within cause he is 'high risk." "Hold me," he says. I bend again. "But 1 won't see you," he minutes of one's arrival, it Me (to R.): "Next time youabove him, cradle his head Me: "I don't think you're replies with a shy smile. Onbecomes interwoven with the go to the clinic, ask for ain my arm. ready. Feb. 10 is too soon." the elevator, I utter aloud a larger fabric of sound the prescription for 50 Levo- "Let yourself go," I say. R. (covering his face withprayer that I will not have toclatter and thump, the quick Dromoran tablets. It's a nar- He does, and minutes laterhis hands, moaning): "Why use the morphine. footfalls, the calling out, the cotic. Maybe they'll give you he is asleep. I free myselfdo you say that?" moaning. Absolutesilence that many. Maybe not." and count the pills that are Met "Because you haven't would be louder. L: "I simply can't believe left,calculatethemilli-done it already. Because FEB. 7 From this doorway I ob- they would turn us in, butgrams. Not enough. It is too you've chosen a method Lunch at arestaurantserve the poverty ofR.'s there's no way to be sure, isfar below the lethal dose. I that is not certain. Becausewith L and M. body, the way he shivers like there?" take a vial of morphine andyou're worrying about L" "It's no good," M. !rays to a wet dog. The draining away More and more we area syringe f rom my pocket, a L: "I feel that I'm an ob-me. "You're going to getof his flesh and blcod is palpa- like criminals, or a cell ofrubber tourniquet. I draw struction." caught." ble. The skin of his hands is as revoluzionanes.L.'s fearup 10 cc. of the fluid and Mec "No, but you're unreli- "What makes you think chaste and dry, as beautiful and guilt are infectious. But inject it into a vein in R.'s able. You cannot tell the liesso?" as old peper. I picture him as then mere is R. I stand up toarm. The respirations slow that may be necessary." "Why would a doctor with a a small bird perched on an leave, assuring them that Idown at once. I palpate his L: "I'm sorry, I'm sorry."practice of one patient be arrow that has been shot and will come agam on Sunday pulse.It wavers, falters, Me: "Don't apologize for present at his death, especial- is flying somewhere. at 4 in the afternoon. M. says stops. There is a long lastvirtue.Itdoesn'tmake ly when the patient is known "R.!" I call out. He opens that she will be there, too. L sigh from the pillow. sense." to be thinking about suicide?" his eyes and looks up, on his hopes he has not shaken my All at once, a key turns in R.: "There is one thing. I She has contacted the Hem- face a look that 1 can only resolve. He apologizes forthe door to the hallwair. The prefer to do it at night, after lock Society and talked with a interpret as reproach or his weakness. door is flung open. Two men dark. It would be easier forsympathetic lawyer. She was disappointment. He knows "We'll talk further," I say. in fedoras and raincoacs en- me." That, if nothing else, is told that there is no way tothat I was not there. L. the R. takes my hand. "You ter the bedroom. They arecomprehensible. Youth bids prevent an autopsy. By Con- Honest has told him. have become my friend. In followed by the doormanfarewell to the moon more necticut law, the newly dead "Do you want to be treated such a short time. One of the whose gallbladder I had re-readily than to the eun. must be held for 48 hours be- for the pneurtionsa?" I asic. best friends of my life." moved. We rehearse the revisedfore cremation, R.'s prefer- He cannot speak for the tube "You are under arrest."plan. L, M. and R. will dine ence. The coroner will see the in his trachea, but he nods. one of them announces. together, "love each other." body. Because of R.'s youth"Do you want to live?" R. JAN. 17 "What is the charge?" I say goodbye. L and M. willand the suspicion of suicide, nods again. "Do you still in the mail there is a noteask, clinging to a pretense take the train to New York the coroner will order an au-want to die?" R. shakes his from L in his small, neatof innocence. "For the mur- for the night. At 6 P.M. R. topsy. Any injected substance head no. handwriting. He thanks me.der of R. C." I am startledwei begin to take the pills. would be discovered. The Enclosed is a copy of a lec- by the mention of his lastAt 8:30 I will let myself into time of death can be esumat-TWELVE DAYS LATER, ture he had given in 1984 in name. Had I known it? I am the apartment. The door-ed with some accuracy.I R. died in the hospital. Three which he cited an Incident led away. man may or may not ques- would have been seen enter- days after that, I met L on from one of my books, about a tion me, but I will have a ing the building around that the street. We were shy, em- doctor who, entreated by a key. I will stay only longume. The police would ask barrassed, like two people suffering patient who wants JAN. 21 enough to be sure that R. isquestions. Interviewed sepa- who share a shameful secret. to die, stays his hand out of R. and I.: R.'s smiledead. If he is not, I will use rately, L, M. and I would give -We must get together mercy. It Is strangely pro-of welcome plays havocthe morphine; if he is, I will conflicting answers. 1 would soon," said L. phetic and appropriate to the with my heart. It Is easy tonot notify anyone. At noon be named. There would be the "By all Means. We should circumstances. see why L fell in love withthe next day, L. and M. will publicity, the press. It wouldtalk." We never did. II

311 zi BEST COPY MAILABLE 32 Sarni* Wog Win (State of Connocticut)

Regulations regarding LivingWills vary from state to state.

LIVING WILL: AN EXPRESS/ON OF MY WISHES

TO MY PERSONAL PHYSICIAN, AND TO ANY MEDICAL FACILITY IN WHOSE CARE I HAPPEN TO BE, AND TO ANY INDIVIDUAL WHO MAY BECOME RESPONSIBLE FOR MY HEALTH, WELFARE, OR AFFAIRS:

1. I am executing this document today in conformity with Section 19a-575 of the Connecticut General Statutes,as an expression of my wish not to be kept alive by artificial means or heroic measures.

2. If the tie comes when I am incapacitated to the point where I can no longer actively take part in decisions for my own life, and am unable to direct my physician as to my own medical care, I wish this statement to stand as a testament of my wishes.

3. I, (name) , request that I be allowed to die and not be kept alive through life support systems ifmy condition is deemed terminal. I do not intend any direct taking of my life, but only that my dying not be unreasonably prolonged. This request is made, after careful reflection, while I am of sound mind.

4. I hope you who care for me will feel morally bound to follow its mandate. I recognize that this appears to place heavy responsibility upon you, but it is with the intention of relieving you of such responsibility and placing it upon myself in accordance with my strong convictions that I have made this statement.

Witnessed:

(Name)

STATE OF CONNECTICUT ) ss Putnam, July 9, 1991 COUNTY OF WINDHAM

Befcre me, the undersigned officer, personally appeared , signer of the foregoing instrument, and acknowledged the same to be her free act and deed.

Notary Public Sample Durable Power of Attorney for HealthCare (State of Connecticut)

Depending on state regulations, the agent designated will have varying authority regarding medical decisions. Not all states have legislation specific to Durable Powers of Attorney for Health Care. DURABLE POWER OF ATTORNEY - HEALTH CARE DECISIONS

KNOW ALL MEN BY THESE PRESENTS, which are intended to constitute a DURABLE POWER OF ATTORNEY pursuant to Connecticut Statutory Short Form Power of Attorney Act:

That I,(name) , do hereby appoint (name) as my attorney-in-fact TO ACT First: in my name, place and stead in any way which I myself could do, if I were personally present, with respect to making decisions concerning my health care, to the extent that I am permitted by law to act through an agent.

This power of attorney shall not be affected by the subsequent disability or incompetence of the principal.

Second: with full and unqualified authority to delegate any or all of the foregoing powers to any person or persons whom my attorney-in-fact shall select.

Third: hereby ratifying and confirming all that said attorney or substitute does or causes to be done.

IN WITNESS WHEREOF, I have hereunto signed my name and

affixed my seal this th day of , 1991.

Name

Attested and subscribed in the present of the principal and subsequent to the principal subscribing same:

STATE OF CONNECTICUT)

SS Putnam, , 1991

COUNTY OF WINDHAM )

Personally appeared (name) , signer of the foregoing instrument and akcnowledged the same to be her free act and deed, before me.

Notary Public/ Commissioner of the Superior Court The Right to Die Your Continued Involvement in This Issue

There are several possible levels and Colorado Speaks Out On Health means of involving yourself in this issue: you Center for Health Ethics & Policy may wish to engage in further dialogue about 1445 Market St.. Suite 380 the ethical and policy considerations, you Denver, Colorado 80202 may wish to ensure that your own death or (303) 820-5635 the death of someone else is consistent with Georgia Health Decisions your wishes or beliefs, or you may wish to Egglestou Children's Hospital influence public policy in a specific direction. 1405 Clifton Rd. These types of involvement are not neces- Atlanta, Georgia 30322 sarily exclusive of one another. To assist (404) 378-4764 you, we list here a few of the wide range of Acadia Institute resources and organizations that are avail- 118 West St. able. Bar Harbor, Maine 04069 (202) 288-4082 Organizations seeking citizen input on medi- Massachusetts Health Decisions cal ethics PO Box 417 Sharon, Massachusetts 02067 American Health Decisions is a coalition (617) 784-1966 of organizations concerned about citizen participation in health care policy decisions. Midwest Bioethics Center This network is a good place to start if you 410 Archibald, Suite 106 want to become more involved in dialogue Kansas City, Missouri 64111 on this issue. (816) 756-2713 Nebraska Health Decisions Below is a list of state organizations that Lincoln Medical Center Assoc. belong to American Health Decisions. The 4600 Valley Rd. extent to which they concentrate on decisions Lincoln, Nebraska 68510 regarding the end of life varies widely from (402) 483-4537 state to state.If your state is not listed, con- Citizens' Committee on Biomedical tact Judy Hutchinson at Colorado Speaks Ethics, Inc. Out On Health for information on a re- Oakes Outreach Center source package for people wanting to start 120 Morris Ave. their own Community Health Decisions pro- Summit, New Jersey 07901-3948 ject. (908) 277-3858 Arizona Health Decisions New Mexico Health Decisions Box 4401 501 Carlyle Blvd. Prescott, Arizona 86302 Albuquerque, New Mexico 87106 (602) 778-4850 (505) 255-6717 California Health Decisions New York Citizens' Committee 505 S. Main St., Suite 400 350 Fifth Ave., Suite 1118

Orange, California 92668 . New York, New York 10118 (714) 647-4920 (212) 268-8900 '

Sex ly Circles Resource CenterPO Box 203(203) 0260316 FM (203) 926-3713

36 The Right to Die

Bioethics Resource Group ties of Self-Deliverance and Assisted Suicide 118 Colonial Ave. for the Dying. Charlotte, North Carolina 28207 (704) 332-4421 The Hemlock Society PO Box 66218 Oregon Health Decisions Los Angeles, CA 90066 921 SW Washington, Suite 723 (213) 391-1871 Portland, Oregon 97205 (503) 241-0744 2. The Society for the Right to Die/Con- cern for Dying is a nonprofit organization Tennessee Guild for Health Decisions that provides advice about patients' rights in CCC-5319 Medical Center North specific situations and files briefs in court Vanderbilt University Medical Ctr. Nashville, Tennessee 37232-2351 cases having to do with the right to die. (615) 883-3248 Since Living Wills and Durable Powers of Attorney vary from state to state, as do laws Vermont Ethics Network concerning the right to die, the organization 103 South Main St. apprises its members of current regulations. Waterbury, Vermont 05676 (802) 241-2920 It also publishes a newsletter for its membership. (Annual membership is $15.) Center for Health Ethics and Law University of West Virginia Society for the Right to Die/ 107 Crestview Dr. Concern for Dying Morgantown, West Virginia 26505 250 W. 57th Street (304) 598-3484 New York, NY 10107 (212) 246-6973 Wisconsin Health Decisions Lawrence University Program in 3. Americans United for Life is a non- Biiethics profit, public-interest law firm and educa- Box 599 tional organization.It describes itself as "the Appleton, Wisconsin 54912 oldest national pro-life organization in Amer- (414) 832-6647 ica,...committed to defending human life through vigorous judicial, legislative and edu- Advocacy organizations cational efforts since 1971." Active in a 1. The Hemlock Society is a nonprofit number of right-to-life issues (most common- ,rganization that advocates the legalization ly the abortion issue), it takes a position Ave euthanasia.It describes itself as an against active euthanasia and the removal of Jducation organization [that] supports the nutrition and hydration from incompetent option of active voluntary euthanasia (self- patients.It has represented the interests of deliverance) for the advanced terminally ill patients whose families wish to remove life- mature adult, or the seriously incurably phys- prolonging treatment.It publishes numerous ically ill person."It publishes documents materials on the euthanasia issue. (For a about current laws and provides advice for publication and price list, contact AUL.) terminally ill patients wishing to end their Americans United for Life own lives. The_president of the Hemlock 343 S. Dearborn Street, Suite 1804 Society, Derek Humphry, is author of the Chicago, IL 60604 recently published Final Edt: The Practicali- (312) 786-9494

36 The Right to Die Suggestions for Leading The Right To Die

All discussion groups are different. The build on the ideas of others enhances a co- participants, the dynamics of your particular r perative rather than a competitive spirit. group, and the nature of the subject at hand While people cannot believe some- make this so. The following suggestions are thing they consider to be false, they must be not intended to be definitive, but rather to willing to entertain the possibility that some offer general guidelines to help structure of their beliefs are, in fact, false. discussions using this material. Ask group members to imagine them- The aim of small-group discussion is for selves as supporters of each of the view- participants to learn from each other. When points in turn by consciously identifying the policy issue under discussion is primarily which underlying beliefs are most compelling. an ethical concern, as is the case in this pro- Taking this sympathetic approach to each gram, discussion is prompted by and in turn position can lead to creative re-examination generates strong and deeply held feelings. of long-held beliefs and a new appreciation This makes for special kinds of challenges of others' beliefs. and potential rewards for the group. The As with other ethical issues, partici- leader's job is to create an atmosphere re- pants may hold strong beliefs about what spectful of all feelings and to challenge the would be the right thing to do in their own participants to go beyond their individual personal lives. Working through these be- opinions in order to give full consideration to liefs with others is only part of the aim of alternative points of view.If you are suc- this discussion; the other goal of the discus- cessful as a leader, the participants should be sion is to consider ideas about what our pub- unable to identify your personal viewpoint on lic policy ought to be. Policy will affect the the subject even at the end of the discussion. circumstances of individual decisions, and in turn individual beliefs will affect public poli- Some general notes on leading discussions cy. Make sure that policy questions are part on issue of ethics and public policy of the discussion by asking participants what they consider to be the rights and responsi- - Sometimes when people hear argu- bilities of society with regard to the issue at ments against their own positions, they be- hand. come involved in attempting to refute the arguments rather than listening and under- Preparing for the discussion standing the other's point of view.If this is The introductory letter and "A Frame- happening in your group, you can encourage work for Discussion" will give you an over- the development of listening skills by asking view of the issue and the way it is presented one goup member to repeat or paraphrase in this material. You should carefully read what another said before responding to it. the rest of the participants' materials several You may also ask the group to think about times until you can clearly describe the three what feeling or value may underlie the two positions. Important general advice for lead- differing viewpoints. Asking participants to ing a discussion is offered in "Leading a Study Circle."

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37 The Right to Die Explaining the ground rules To begin the consideration of the right to die, have the participants reflect on our soci- In order to reiterate to the participants ety's changing concept of death. Huw have the purpose of this discussion, you may wish technological changes affected the ways we to begin by saying something like the follow- think about the end of life? What are the ing: "My role is to assist in keeping discus- major concerns that people today have about sion focused and moving along. Your role is the way in which the end of life is managed? to deeply examine your own beliefs by care- To prompt discussion of this second ques- fully considering the beliefs of others. This tion, you might mention the popularity of the means that listening to others iscritical. recently published book, Final Exit (by Derek During the course of the discussion, I hope Humphry), that gives advice to the terminally that you will take advantage of opportunities ill on how to end their own lives; ask par- to argue from a point of view that you don't ticipants for their reactions to the book and consider your own." to its popularity. To give a sense of direction for the two- hour session, you may wish to lay out a gen- Understanding the positions eral plan for how the discussion will proceed: In this part of the discussion, your aim is 1) a general discussion of how changes in to help the group members to come to an technology have changed our concept of understanding of the positions before they go death (remainder of the first half-hour); on to debate the positions' relative merits. 2) understanding the positions as presented in this material (about half an hour); and First, give the participants a few minutes 3) a critical examination and debate of the to review "A Summary of the Positions." positions, ane closing (the remaining hour). After that, one way to introduce the material is to ask if anyone would be willing to de- introductions and startvig the discussion fend one of the positions to the group, even if it is not a position of that person's choice. Ask participants to introduce themselves; This kind of role playing can set a tone of you may wish to ask them to state briefly openness and encourage the group to con- what prompted them to come to this discus- sider unpopular opinions. At this stage of sion.(If participants did not receive material the discussion, other participants may ask prior to the meeting, you might wish to give questions to clarify the content of the posi- them a few moments to read the cases de- tions, but debate should wait until all four scribed in "A Framework for Discussion.") positions have been presented. What it means to die with dignity is a matter of very personal concern to all of us, Discussing the positions and bringing these personal concerns to- At this point, ask participants to discuss gether with ethical and policy considerations the positions based upon their actual pre- is a sensitive and challenging task for the ferences. A thorough exploration of the leader.In your sensitivity to participants' positions will reveal a complex set of presup- concerns, you will assist participants to listen positions underlying the views and a variety to each other's concerns and beliefs. At the of implications that follow from them. Lead- same time, you should assist the group in ers might want to ask participants which of thinking out the policy implications of their the supporting points seem most persuasive beliefs. for each of the positions, and why. "Suggest- ed Discussion Questions" may come in handy for you during this part of the discussion, U

38 The Right to Die especially if the group (or the vocal part of it) is reaching early consensus. Each participant should feel comfortable to express a minority opinion; there should be no feel of a "hidden agenda." Your questions should assist the members in thinking about the strengths and weaknesses of each position, and in thinking about the possible policy implications of each of the three. Reaching consensus is not the goal of this discussion. Disagreement is likely to be more constructive, however, when you aid the participants in seeing any important areas of agreement they may have.

Closing the discussion A good way to close the discussion is to ask whether anyone's views have changed or become more clear to them during the course of the discussion. This closing question has the advantage of providing an open- ing for those who came into the discussion without a clear stand and who may have been quiet through most of the discussion. Encourage participants to continue discussing this issue with others. Call their attention to the section of the material entitled "Your Continued Involvement in This Issue."

Finally, thank the participants for attending and ask them to fill out and return the "Follow-up Form" on the back cover of the packet.

39 The Right to Die Suggested Discussion Questions

In the course of the session, to guide the treatment anyway. Does the patient discussion or to bolster flagging conversation, have the right to receive treatment and, if so, the leader may choose to ask participants to at whose expense? consider some of the following questions. 2.Consider a case in which the doctor thinks that treatment would benefit the pa- Starting the discussion tient and yet the patient wishes to refuse the 1. How have technological advances treatment and be allowed to die. Does the forced us to change our concept of death? patient have the right to deny treatment? For example, compare the kinds of medical 3.Killing is usually considered to be decisions you might have to make as you morally wrong; that is, most people will allow near the end of life with the typical decisions for certain exceptions (for example, for self- people had to make 50 or 100 years ago. defense). Do you consider euthanasia to be 2. Final Exit, a recently published book a permissible exception to the immorality of by Derek Humphry, gives advice to the ter- killing? (You may wish to refer to some of minally ill on how to commit suicide; it rap- the cases in "A Framework for Discussion" in idly became a best seller, even without much order to elicit responses from the group.) advance publicity. Do you ai prove or disap- 4. 'For more than ten years the Nether- prove of the publication of this book? Why lands has tacitly allowed for assisted suicide or why not? Reflect on the reasons for its and active euthanasia, though technically popularity. What do you think that this both are against the law. (Recent research on demonstrates about our society's values and euthanasia in Holland is described in an ar- about public policy regarding the right to ticle reprinted from The New York Times, die? included in the supplementary reading.) How does Holland's experience affect your opin- Understanding the positions ion of the argument that allowing for eutha- 1. Of any position, asks What are the nasia will put society on an inevitable course strongest arguments in favor of this position? toward killing those society deems unworthy of living? 2. You might ask a participant to "take on" the perspective of a position he or she does 5. What is the obligation of the physi- not agree with. Ask the role player to use the cian, especially when the following commonly strongest possible atgwnents underOng that assumed obligations may be in conflict: to do viewpoint to defend it. no harm; to do everything possible to prolong life; to respect the patient's wishes; to 3. Of any position, ask: What public poli- relieve suffering. How do we decide which cy would follow from this position? of these should be the most important? Discussing the positions 6. What rights, if any, does society have with regard to its members' decisions about 1.Suppose that there is a case in which the right to die? What responsibilities, if the physician regards further treatment as futile, and yet the patient wants to continue

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40 TheRight to Die any, does society have with regard to those decisions? 7. Who should decide for society the answer to the ethical questions we have been considering? In what ways are you satisfied or dissatisfied with the regulations that currently exist? 8. When is letting someone die morally equivalent to assisting in the person's suicide? 9. Under most current medical standards in the U.S., allowing someone to die is considered permissible under certain circumstances, while actively assisting a person in dying is never considered permissible. The removal of extraordinary treatment (now usually defined to include feeding and hydration tubes), though an "action," is usually considered to be the same as passively withholding treatment. Do you think that these are valid moral distinctions?

10.Position 3 presumes that it is a violation of the right to life not to sustain life. How would the endorsement of this position in public policy affect society's allocation of resources?

Closing the discussion 1. What are the main points of agreement and disageement that have emerged during this discussion? 2. Have your views on the right to die changed or become more clear to you as a result of this discussion?In what ways? 3. What advice would you give to policymakers who are making decisions about this issue?

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41 te" Leading a Study Circle LJRCECt The study circle leader is the most impor- furthering the discussion and not for establish- tant person in determining its success or failure. ing the correctness of a particular viewpoint. It is the leader's responsibility to moderate the discussion by asking questions, identifying key Utilize open-ended questions. Questions points, and managing the group process. While such as, "What other possibilities have we not doing all this, the leader must be friendly, un- yet considered?" will encourage discussion rath- derstanding, and supportive. er than elicit short, specific answers and are especially helpful for drawing out quiet mem- The leader does not need to be an expert. bers of the group. However, thorough familiarity with the reading material and previous reflection about the di- Draw out quiet parlicipants. Do not rections in which the discussion might go will allow anyone to sit quietly or to be forgotten by make the leader more effective and more com- the group. Create an opportunity for each fortable in this important role. participant to contribute. The more you know about each person in the group, the easier this The most difficult aspects of leading discus- will be. sion groups include keeping discussion focused, handling aggressive participants, and keeping Don't be afraid of pauses and silences. one's own ego at bay. A background of leading People need time to think and reflect. Some- small group discussions or meetings is helpful. times silence will help someone build up the The following suggestions and principles of courage to wake a valuable point. Leaders group leadership will be useful even for experi- who tend to be impatient may find it helpful to enced leaders. count silently to 10 after asking a question.

"Beginning is half," says an old Chinese Do not allow the group to make you the proverb. Set a friendly and relaxed atmosphere expert or "answer person." You should not from the start. A quick review of the sugges- play the role of fmal arbiter.Let the partici- tions for participants will help ensure that pants decide what they believe. Allow group everyone understands the ground rules for the members to correct each other when a mistake discussion. is made.

Be an active listener. You will need to Don't always be the one to respond to truly hear and understand what people say if comments and questions. Encourage interac- you are to guide the discussion effectively. tion among the group.Participants should be Listening carefully will set a good example for conversing with each other, not just with the participants and will alert you to potential con- leader. Questions or comments that are di- flicts. rected at the leader can often be deflected to another member of the group. Stay neutral and be cautious about expressing your own values. As the leader, you Don't allow the group to get hung up on have considerable power with the group. That unprovable "facts" or assertions. Disagree power should be used only for the purpose of ments about basic facts are common for con

Study Cfro4e Rabourat CenterPO Box 203Pomfret, CT 02255(203) M-2616 42 troversial issues.If there is debate over a fact Synthesize or summarize the discussion or figure, ask the group if that fact is relevant occasionally.It is helpful to consolidate related to the discussion.In some cases, it is best to ideas to provide a solid base for the discussion leave the disagreement unresolved and move to build upon. on. Ask hard questions. Don't allow the Do not allow the aguessive, talkative discussion to simply confirm old assumptions. person or faction to dominate. Doing so is a Avoid following any "line," and encourage parti- sure recipe for failure. One of the most dif- cipants to re-examine their assumptions. Call ficult aspects of leading a discussion is restrain- attention to points of view that have not been ing domineering participants. Don't let people mentioned or seriously considered, whether you call out and gain control of the floor.If you agee with them or not. allow this to happen the aggressive will dominate, you may lose control, and the more polite Don't worry about attaining consensus. people will become angry and frustrated. It's good for the study circle to have a sense of where participants stand, but it's not necessary Use conflict productively and don't allow to achieve consensus. In some cases a group participants to personalize their disagreements. will be split; there's no need to hammer out Do not avoid conflict, but try to keep discussion agreement. focused on the point at hand. Since everyone's opinion is important in a study circle, partici- Close the session with a brief question pants should feel safe saying what they really that each participant may respond to in turn. think even if it's unpopular. This will help them review their progress in the meeting and give a sense of closure.

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43 Suggestions for Participants

The goal of a study circle is not to learn a Be aware that some people may want to speak lot of facts, or to attain group consensus, but but are intimidated by more assertive people. rather to deepen each person's understanding of the issue.This can occur in a focused Address your remarks to the group rath- discussion when people exchange views freely er than the leader. Feel free to address your and consider a variety of viewpoints. The pro- remarks to a particular participant, especially cess democratic discussion among equals is one who has not been heard from or who you as important as the content. think may have special insight. Don't hesitate to question other participants to learn more about The following points are intended to help their ideas. you make the most of your study circle experience and to suggest ways in which you can help Communicate your needs to the leader. the group. The leader is responsible for guiding the discussion, summarizing key ideas, and soliciting clari- Listen carefully to others. Make sure fication of unclear points, but he/she may need you are giving everyone the chance to speak. advice on when this is necessary. Chances are you are not alone when you don't understand Maintain an open mind. You don't what someone has said. score points by rigidly sticking to your early statements. Feel free to explore ideas that you Value your own experience and opinions. have rejected or failed to consider in the past. Everyone in the group, including you, has unique knowledge and experience; this variety Strive to understand the position of makes the discussion an interesting learning those who disagree with you. Your own knowl- experience for all.Don't feel pressured to edge is not complete until you understand other speak, but realize that failing to speak means participants' points of view and why they feel robbing the group of your wisdom. the way they do.It is important to respect people who disagree with you; they have rea- Engage in friendly disagreement.Differ- sons for their beliefs. You should be able to ences can invigorate the group, especially when make a good case for positions you disagree it is relatively homogeneous on the surface. with. This level of comprehension and empathy Don't hesitate to challenge ideas you disagree will make you a much better advocate for what- with. Don't be afraid to play devil's advocate, ever position you come to. but don't go overboard.If the discussion becomes heated, ask yourself and others whether Help keep the discussion on track. rtason or emotion is running the show. Make sure your remarks are relevant; if necessary, explain how your points are related to Remember that humor and a pleasant man- the discussion. Try to make your points while ner can go far in helping you make your they are pertinent. points. A belligerent attitude may prevent acceptance of yc.-- -issertions. Be aware of Speak your mind freely, but don't mo- how your body language can close you off from nopolize the discussion.If you tend to talk a the group. lot in groups, leave room for quieter people. ® Printedon 10044o Recycled Paper

Study Cirolos Resource Center PO Boor 2 03 Pomfret CT 06256 (203) 928.2616 The Right to Dle Follow-up Form

Please take a few minutes to complete and return this follow-up form. Your answers will help us improve the Public Talk Series material and make it a more valuable resource.

1) Did you use The Right to Die? yes no If so. how? (check all that apply) in a discussion group for reference or research material for lecture or classroom use

2) What did you think of the program? very good poor -, content 1 ... 3 4 5 format 1 1 3 4 5 balance, fairness 1 ' 3 4 5 suggestions for leaders 1 _1 3 4 5 suggestions for participants 1 ' 3 4 5 1 supplemental readings 1 3 4 5

3) Please answer the following if you held or were part of a discussion group. Your role was the organizer the discussion leader a participant Who was the sponsoring organization (if any)? How many attended? Where was the program held? city state How many times did your group meet to discuss this topic? Participants in this discussion group (check all that apply) came together just for this discussion hold discussions regularly meet regularly, but not usually for issue-oriented discussion Would you use study circles again? yes no

4)What future topics would you like to see in SCRC's Public Talk Series?

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Pis= um ID tiro Sallyagr &num Caw. PO Bac 203, Pastba, CT OUSS or FAX so can ft MILS. Sus moms ads lor Merin ea odor Pies Tea peogrum-. Public Talk Series Programs and Other Resources Available from the Study Circles Resource Center Publications of the Study Circles Resource Center (SCRC) include topical discussion programs: training material for study circle organizers, leaders, and writers: a quarterly newsletter: a clearinghouse list of study circle material developed by a variety of organizations: and a bibliography on study circles, collaborative learning, and participatory democracy. Prices for topical programs are noted below. (You are welcome to order single copies and then photocopy as necessary for your group.) Other resources from SCRC are free of charge. Topical discussion programs Other resources from the (prices are noted below) Study Circles Resource Center Comprehensive discussion guides (available at no charge) Can't We All Just Get Along? A Manual for Pamphlets Discussion Programs on Racism and Race "An Introduction to Study Circles" (20 pp.) Relations - $3.00 "Guidelines for Organizing and Leading a Election Year Discussion Set - $5.00 Study Circle" (32 pp.) The Health Care Crisis in America "Guidelines for Developing Study Circle Welfare Reform: What Should We Do Course Material" (32 pp.) for Our Nation's Poor? Revitalizing America's Economy Resource Briefs (single pages) for the 21st Century "What Is a Study Circle?" The Role of the United States "Leading a Study Circle" in a Changing World "Organizing a Study Circle" "The Role of the Participant" Public Talk Series programs - $2.00 each "Developing Study Circle Course Material" 203 - Revitalizing America's Economy for the "Assistance with Study Circle Material 2Ist Century Development" 401 - The Health Care Crisis in America "What Is the Study Circles Resource 501 - Homelessness in America: What Should Center?" We Do? "The Study Circles Resource Center 302 - The Right to Die Clearinghouse" 301 - The Death Penalty 304 - Welfare Reform: What Should We Do Connections (single-page descriptions of for Our Nation's Poor? ongoing study circle efforts) 202 - American Society and Economic Policy: Adult Religious Education What Should Our Goals Be? Youth Programs 303 - Are There Reasonabk Grounds for War? Study Circle Researchers 106 - Global Environmental Problems: Unions Implications for U.S. Policy Choices Focus on Study Circles (free quarterly 105 - Facing a Disintegrated Soviet Union newsletter) 107 - The Arab-Israeli Conflict: Looking for a Sample copy Lasting Peace * Subscription 104 - The Role of the United States in a Other publications Changing World * Clearinghouse list of study circle material based on material developed by the Choices for the Annotated Bibliography on Study Circles, 21st Century Education Project of the Center for Collaborative Learning, and Participator), Foreign Policy Development at Brown University Democracy

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