Spanish Inqusition Essay, Research Paper

End of Life Care and Decision Making Faye J. Girsh, Ed.D. Executive Director, Hemlock Society USA (The following article was published in The Journal of the Hippocratic Society, Volume I, Fall 1997) Background On June 26, 1997, the U.S. Supreme Court issued a unanimously ambivalent opinion saying that there is no right to physician-assisted dying under the 14th Amendment, but that it is a matter to be left to state legislatures.(1,2) Rather than putting a stop to the debate, the decision has raised the volume of dialogue, which will increase as citizens vote on ballot initiatives and legislators introduce bills permitting physician aid in dying. Especially for the past five years, the American public has been deluged with journal and newspaper articles, TV coverage, books, court decisions, jury verdicts, surveys, referenda, legislation — more than the average person can follow. One fortunate fallout of the controversy has been greater attention to the care of the terminally ill. The right-to-die issue rivals the abortion controversy in capturing public attention, although the question of how we die has even more universal impact. It can be expected that after enabling legislation is passed, the divisiveness about the issue will not disappear since there is a strong, religiously dominated minority who see both issues as a threat to the sanctity of life and who will continue to rail against choice in both areas. As with most other strongly held beliefs, there are advocacy organizations for both sides. The Hemlock Society was founded in 1980, shortly after the first “living will law” was passed in California in 1976; since then other organizations have developed. The mission of the Hemlock Society is to maximize the options for a dignified death, including voluntary physician aid in dying for terminally ill, mentally competent adults. When the Hemlock Society was founded, “passive euthanasia” was just becoming acceptable, i.e., letting a patient die by refusal or removal of life support. It was a decade later that the Supreme Court, albeit weakly, affirmed the right of every American to refuse or withdraw unwanted medical treatment, including food and hydration, and to have an agent speak for them if they were incompetent.(3) But that is not enough, since many patients who stop treatment die a prolonged and agonizing death and others do not have treatment to remove and so have no way to hasten their deaths. Although there had been perfunctory legislation unsuccessfully introduced in the first half of this century, it was in 1988 that the recent attempts to pass laws permitting physician aid in dying began. In California the Humane and Dignified Death Act was proposed but did not get enough signatures to get on the ballot(4). In 1991 46% of the voters in Washington supported Proposition 119 (5) The following year a similar ballot measure, Proposition 161, was placed before the people of California and also received 46% of the vote.(6) Both campaigns were expensive and heated; advocates of physician aid in dying were outspent three to one, moneys coming primarily from Catholic sources. In 1994 51% of the people of Oregon voted to permit physician aid in dying, using a prescribing-only model, but the Oregon Death with Dignity law has been tied up in the Courts since then and has not gone into effect(7). The Oregon legislature voted to turn it back to the people in a repeal vote which will be taken November 4, 1997. (Editorial Note: The repeal effort was rejected by a 60 to 40% margin and the Oregon Death with Dignity Act remains in effect.) The issue is not one which effects just Americans. Since 1984 the Dutch have permitted euthanasia and physician assisted suicide under strict judicial guidelines although no law has been passed. In Switzerland about 120 people die each year with the help of physicians and members of the Exit Society following a law passed there 60 years ago allowing euthanasia if the intent is benign.(8) The Northern Territory of Australia, under the Rights of the Terminally Ill Act, permitted four people with cancer to die with the help of a doctor from July 1996 to December 1996 before the law was repealed by the federal parliament (9). This year in Colombia, a Catholic country, the Constitutional Court ruled that mercy killing should be decriminalized. (10) Why the growing consensus? Below I will list the reasons the Hemlock Society — and the majority of Americans polled — believe that providing physician-assisted dying for a terminally ill, mentally competent adult who requests it is a humane, compassionate, safe and effective option which should be made legal. Eighteen reasons for legalization 1. It is inhumane, cruel and even barbaric to make a suffering person whose death is inevitable live longer than he or she wishes. It is the final decision a person makes; there must be autonomy at that time of life if at no other. To quote legal philosopher Ronald Dworkin: Making someone die in a way that others approve, but he believes is a horrifying contradiction of his life, is a devastating, odious form of tyranny. (11) 2. It is necessary for physicians to be the agents of death if the person wants to die quickly, with certainty, peacefully and non-violently since the best means to accomplish this is medication that only doctors can prescribe. There is no prohibition against a person killing oneself. In a civilized society a person should be able to die quickly with dignity and certainty in the company of loved ones, if that is her wish. Methods at the individual’s disposal, however, are usually violent and/or uncertain, often traumatizing the patient and the family. Ironically, the moral and ethical objections to hastening death are not with self-deliverance. There is little concern in the dialogues about the fact that people choose to hasten their deaths. It is about the role of the doctor and the ethics and legality of that kind of intervention. There is even little dialogue about one person who is not a doctor helping another person, although this is illegal since it is still assisted suicide 3. A dying person who wishes to hasten her inevitable death does not cause the same repercussions as someone who is suiciding, as we know it. Suicide, as we think of it, occurs in a person who is emotionally unstable and has a problem that will go away with time and/or intervention. It has been called a permanent solution to a temporary problem. Suicide traumatizes survivors because of the guilt they feel that they could have helped, that they were not able to talk about it, that the death was sudden and often violent and that there would have been a long, fulfilling life ahead if the person had changed his or her mind. With a terminally ill person, if physician-assisted dying were legal, the family could be present, good-byes could be said, and the death could be, as some family members who have openly participated describe it, a “wonderful” experience. And there would be no guilt that the person could have lived a full life had the hastened death not occurred since it would be at the patient’s request, usually with the consultation of the family, and in the context of terminal illness. 4. A significant majority of Americans favor legalizing physician aid in dying for terminally ill people who request it and this number has increased steadily. Figure 1 illustrates this trend from 1947 to 1996. (12) 5. Disabled, poor, elderly and minority people also want to die a good death. Polls of disabled individuals show a majority in support. A 1994 Harris poll found 66% of people with disabilities surveyed support a right to assisted dying. (13) Between 63% and 90% of people with AIDS want this option and 55% have considered it for themselves. (14,15) Two articles by influential disabled individuals indicate their reasoning in supporting legal physician aid in dying. (16, 17) Support is also strong from older Americans. A 1996 survey by RxRemedy Magazine of more than 30,000 people over 55 showed 65% agreed that the terminally ill had a right to commit suicide with a doctor’s assistance (18) In the guise of protecting these groups, opponents argue that they would be hurt by an assisted dying law since they would be vulnerable. This “protection” essentially not only deprives people who are not in these categories of choice and dignity in dying, it robs those very groups of the choice with no evidence that this is not a choice they would want. In fact, evidence suggests that all people want this option, regardless of their status. 6. It is consistent with a doctor’s role to relieve suffering and to do no harm. Few doctors now take the actual Hippocratic Oath, which is irrelevant in many respects to modem medicine. Relief of suffering is the major objective of medicine; in the final extremes of a patient’s life, the only way to relieve suffering may be to comply with a patient’s wish for death. Many patients would trust a doctor more who would offer them all alternatives at life’s end than those who would stop short of granting them their wish. What is likely is that patients and doctors do not have a dialogue about this and that physician aid in dying would actually enhance the doctor-patient relationship. (19) 7. Physicians are helping patients die now with no monitoring or controls. They cannot contact consultants or openly discuss their choices. A recent study of physicians in San Francisco who work with AIDS patients showed that 53% provided help in dying. (20) Surveys of doctors also show support for legalization. Fifty-four percent of Washington state physicians surveyed agreed physician aid in dying should be legal under some conditions. (21) In Oregon 60% of physicians agreed and 66% agreed in Michigan. (22,23) 8. Religious opinions about the sanctity of life would be respected. People who do not want a hastened death would not have to have one. However, there are many ways of hastening death, or at least not extending life, which are approved by religious groups including refusal of treatment including food and hydration, hospice, and the double effect (providing enough pain medication to end suffering without the direct intention of causing death even if death is a result.) Even groups most passionately concerned about the sanctity of life, which did at one time raise concerns about refusal of treatment, have come to a position that quantity of life considerations must be balanced against quality of life realities.(24) Surveys which have analyzed their results by religious preference show that at least 50% of Catholics favor this (18), some results show up to 72% of Catholics endorse the idea. (25,18) 9. Palliative care would not be precluded. Most of us do not want to make the choice between compassionate hospice care, which could provide excellent pain relief, and the option of asking for a hastened death if pain and suffering were unbearable. There seems to be no argument that all dying patients should have the option to refuse heroic measures, should receive the best pain relief available, and should have access to hospice services. The debate is whether there also must be a choice between hospice and assisted dying. Janet Good, former president of the Hemlock Society of Michigan, died recently of pancreatic cancer while under the excellent care of the Angela Hospice and apparently with the help of Dr. Kevorkian. It seems logical, in fact, for some non-religious hospices to provide the help desired by a small percentage of their patients. 10. There would be no progression beyond what public policy dictated. Terminally ill, mentally competent adults is the category of individuals we are generally talking about now, although some proposals have included people with hopeless illnesses. We have not had a chance to see how this model of physician aid in dying will work; it is premature to consider expanding the law at this point. Slippery slopes are neither predictable nor preventable so it is pointless to argue that allowing this limited model of help for dying, competent adults will inevitably lead to other consequences which are undesirable for society. 11. Refusal of treatment is not enough and is morally equivalent to asking for help in dying. Many people feel that they are protected because they have an advance directive. This only permits refusal or termination of treatment. It will not assure that death will not be prolonged and agonizing. In both cases the wish of the patient is to end life. It is often the fortunate patient who can “pull the plug”; for those who do not have a plug, assisted dying is the humane and ethically equivalent solution. 12. People would live longer and better knowing there is help if the suffering becomes unbearable. The anxiety of not knowing how much longer one would have to suffer and watch the family suffer adds to the burden of terminal illness. Many people must end their lives prematurely through suicide while they are still able. Life could be extended if they knew help would be available from a physician. 13. Not all pain can be controlled. Even taking the best estimate from hospice, that 97% of pain is controllable, that still leaves 3% of dying people whose pain is unrelievable. What help is there for them? And, not all suffering is caused by physical pain. Surveys of patients in Holland who request aid in dying show that pain is fifth on the list of reasons why they ask for a hastened death. It is “senseless suffering” and the indignities of dependency, incontinence, and poor quality of life which lead them to request a hastened death.(26) In addition, not all patients want the consequences of adequate pain control, which include diminution of cognitive function and constipation. 14. Physician aid in dying is being done now. Doctors have always helped their patients end their suffering. But, if we are concerned about abuse, there should be controls and monitoring. And, it is a disservice to those people who cannot get help because they lack a personal relationship to their doctor, or who have a doctor who is unwilling to risk legal action and loss of license. No doctor has ever been convicted for helping a patient die, but those who do help often have to experience horrendous legal hassles before they are acquitted. Aid in dying must be regulated, legalized and above board so that doctors, families and patients can discuss it as part of the continuum of care. The process and criteria should be regulated and the outcomes reported. This is the way to prevent abuses and stop the slippery slope — not by driving it underground. 15. The issue will not go away. Increasingly, people are dying of chronic, debilitating illnesses such as cancer, neurological diseases, AIDS, and heart disease. This means longer periods of suffering and a prolongation of the dying process. People fear this extended dependency and want to know there is an end about which they can make a determination. 16. Physician aid in dying is not a significant cost-cutting measure. What we know from Holland is that life is reduced by a matter of days when physician intervention occurs. It is more of a cost-saving when treatment is refused, so there would be an incentive for managed care organizations to encourage patients to refuse or terminate life-saving treatments or even to refer them prematurely for hospice care. There is no hue and cry about this and certainly no suggestion that we rescind the right to refuse treatment or hospice because of the possible coercion that people might be experiencing from the physician or the insurance carrier. 17. The abuses of not permitting lawful aid in dying far outweigh any that would arise if a carefully safeguarded law were in place. What we have now are botched attempts, trauma to the family, needless suffering on the part of patients and their loved ones, and doctors who are helping without any type of oversight, juries who acquit physicians, and loved ones who help, thus making a mockery of the law. Above all, there is an injustice to a dying individual who is denied the ultimate choice of deciding the time and manner of her death. 18. A mockery is made of the existing law. No doctor has been convicted in this country for helping a patient die. Juries routinely acquit physicians and loved ones who provide compassionate help and most cases are not even charged or brought to trial. The principle of double effect is used as a “don’t ask, don’t tell” situation where medication is given to hasten death but the “intention” is only to relieve suffering. This means doctors and patients cannot discuss it; patients who would like help are wary of putting their doctors in a criminal situation. What’s next? There is no question that physician aid in dying will eventually be an option for people who live in developed countries where chronic diseases are the major cause of death. People want this, doctors want it; it can be regulated, and people in a free world must be able to decide this ultimate question about their lives. References (1) Washington v. Glucksberg, 177 S. Ct. 2258; 1997. (2) Vacco v. Quill, 117 S. Ct. 2293; 1997. (3) Cruzan v. Director, Missouri Department of Health, U.S. Supreme Court, No. 2841, 1990. (4) Risley RL Death with Dignity: a New Law Permitting Physician Aid in Dying. Eugene, Oregon: The Hemlock Society, 1989. (5) Washington Death with Dignity Act, 1991. (6) California Death with Dignity Act, 1992. (7) Oregon Death with Dignity Act, 1994. (8) Shar M. “Assisted suicide in Switzerland: when is it permitted?” 1997 Hawaii Medical Journal 56:3:63-7. (9) Northern Territory of Australia REPR009. Rights of the terminally ill act. 1996. (10) Sequera V. “Colombian high court OKs euthanasia,” Rocky Mountain News, p. 52A; May 22, 1997. (11) Dworkin R. Life’s dominion: An argument about abortion, euthanasia, and individual freedom. New York: Vintage Books/Random House, 1994. (12) The Polling Report, July 28, 1997, 6. (13) Public Opinion On-line. Question 004 NEW06090. New York: Louis Harris and Associates, 1995. (14) Breitbart W, Rosenfeld BD, Passik SD. 1996. “Interest in physician-assisted suicide among ambulatory HIV-infected patients.” American Journal Psychiatry 153:238-42. (15) Tindall B, Forde S, Carr A, Barker S, Cooper DA. “Attitudes to euthanasia and assisted suicide in a group of homosexual men with advanced HIV disease.” 1993. J. Acquir Immune Def Syndr 6:1069-70. (16) Batavia A. 1997. “Disability and physician-assisted suicide.” New England Journal of Medicine 336:1671-1673. (17) Corbet B. 1997. “Closet Talk” New Mobility 8.3. (18) Cataldi S and Case C. “Rx-Remedy survey of 30,000 Americans age 55 and over indicates strong support for the right to die.” 1997; Hawaii Medical Journal 56:74. (19) Girsh FJ. “Physician aid-in-dying: What physicians say, what patients say.” August 1992; Western Journal of Medicine 157: 188-189. (20) Slome LR et al, “Physician-assisted suicide and patients with human immunodeficiency virus disease.” 1997; New England Journal of medicine 36:6:417-421. (21) Back AL, Wallace JI, Starks HE, and Pearlman RA. “Physician-assisted suicide and euthanasia in Washington State: Patient requests and physician responses.” Journal of the American Medical Association 275(12): 919-25 (22) Lee MA et al. “Legalizing assisted suicide: views of physicians in Oregon.” 1996; New England Journal of Medicine 334: 310-5. (23) Bachman JG, Alcser KH, Doukas DJ, Lichtenstein RL, Corning AD, and Brody H. “Attitudes of Michigan physicians and the public toward legalizing physician-assisted suicide and voluntary euthanasia.” 1996; New England Journal of Medicine 334(5):303-309. (24) Girsh FJ. “The case for physician assisted dying.” 1997; Paper presented to the International Catholic Press Association Conference, Denver, CO. (25) Blendon RJ and Szalay US. 1992. “Should physicians aid their patient in dying?” Journal of the American Medical Association 267:2658-2662. (26) van der Wal G et. al. 1991. “Euthanasia and assisted suicide by general practitioners.” Translated from the Dutch, copyright The Hemlock Society. The survey originally appeared in Mediseh Contact, the weekly journal of the Royal Dutch Medical Association

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