Robert F. Weir

Affirming the decisions adolescents make about life and death

Adolescents who are critically, chronically, and terminally ill traditionally have been given little voice in their health care treatment. But over the last three decades attitudes have begun to shift. The legal and medical professions as well as parents and childrens advocates have started to recognize that cognitively normal adolescents have decisionmaking capacity and believe these patients ought to have the opportunity to participate in even the toughest of health treatment decisions. Advances directives, if used with sensitivity and care, could prove a valuable means of giving these older pediatric patients a say in their care.

Establishment of a successful donor embryo program: medical, ethical, and policy issues

OBJECTIVE To determine how couples prefer to dispose of their extra embryos and to establish a donor embryo program for the treatment of infertile couples. DESIGN Cohort study. SETTING University-based IVF program. PATIENT(S) Patients (n = 365) with cryopreserved embryos in storage for >2 years and eight patients who desired donated embryos for transfer. INTERVENTION(S) An IVF ethics committee was formed to discuss the ethical and policy issues involved in starting an embryo donation program and to establish program guidelines. Couples with embryos cryopreserved for > or = 2 years were contacted to determine their desires for disposition of embryos. Potential recipients of donated embryos were identified in our clinic, and donated embryos were transferred to these patients. MAIN OUTCOME MEASURE(S) Desires for embryo disposition and pregnancy rates. RESULT(S) Most couples elected either to continue storage of their embryos for future use (44%) or to discard their embryos (34%). A minority elected to donate their embryos either to infertile couples (11%) or for research (10%). Eight couples have had donated embryos transferred, and four have conceived ongoing pregnancies. CONCLUSION(S) Although only a small percentage of couples are willing to donate their embryos, the resulting number of embryos for use is substantial. Transfer of donated embryos results in a high pregnancy rate and is a cost-effective treatment of infertility.

The Morality of Physician-Assisted Suicide:

In March, 19%). I 2 physicians published an article on the provision of care t o hopelessly ill patients. Unfortunately, inany of the siilxtantive points in that article received insufficient attention from readers hecause the authors’ call for appropriate, continually adjusted care for terminally ill patients was overshadowed by a portion of the document in which ten of the authors agreed chat “it is not immoral for a physician to assist in the rational suicide of a terminally ill person.”’ In June, 1970, Jack Kevorkian, a retired pathologist in Michigan, gained international media attention by enabling Janet Adkins, a woman in the early stage of Alzheimer’s disease, to terminate her life with the hclp of his “suicide machine.”’ The features of the case were so uriusual that physicians, ethicists, and attorneys i n health law who were interviewed by journalists were unanimous iii judging this particular act of physician-assisted suicide deplorable.) I n M‘irch, rggr, Timothy Quill, an internist in New York, published a detailed accotint of thc suicide of one of his patients identified only as “Diane,” a patient with acute niyeloinonocytic leukemia who requested and rcceived his assistance in killing herself with an overdose of barliturates.4 Given the features of this particular case, some of the professionals in medicine. ethics, and law interviewed by the incdia judged Dr. Quill’s action to have been inorally acceptable, even if against the law in New York.5 The issuc of physiciaii-assisted suicide (I’AS) is not limited to these wcll-puhlicized examples. The American Hospital Association estimates that many ot the 6,000 daily deaths in the United States are orchcstrated by patients, relatives, and physicians, although how many of these deaths are assisted suicides is unknown.‘, In a 1990 New York Tirnes-CRS poll, taken two weeks after tlie initial publicity of the Adkins case, 53 percent of the respondents said that physicians should be allowed to assist R severely i l l person in terminating his or her own life.7 Moreover, PAS is lieginning to he addressed as a separate ethical issue in the medical literature, without being lumped together with the related but different issuc of voluntary ei~thanasia.~ The legal status of PAS is also being tested in an unprecedented manner. The Hemlock Society, having failed three years ago to get “The Huniiine and Dignified Death Act” on the ballot in California, successfully worked with a coalition called Washington Citizens for Death with Dignity to get Initiative I i g on tlie ballot in Washington iii November, 1931. The wording of this initiative, iisiiig language that blurs the differences between PAS and voluntary euthanasia, simply asked voters: “Shall adult patients who are in i i medically terminal conditioii be permitted to request and reccive from ;I physician aid-in-dying?”” Given these cvents, the time has come for a serions discussion of the niorality and legality of physician-assisted suicide. I hope to contribute to that discussion 1)y tirst analyzing the concept of assisted suicide and descrihing the diversity of possible legal responses to acts of PAS. I will thcn provide an ethical aiialysis of I’AS b y discussing the cases of Janet Adkins and “Di;ine,” sorting out the competing ethical argiiments alwut this issue, ;ind making some recommendations for professional practice and public policy.

Patients’ views about physician participation in assisted suicide and euthanasia

OBJECTIVE: To elucidate the effect of physician participation in physician-assisted suicide and euthanasia on the physician-patient relationship.DESIGN: A questionnaire administered to 228 adult patients.SETTING: A university-based family practice training program.PATIENTS/PARTICIPANTS: We approached 230 individuals of at least 18 years of age who were patients in the study practice. These individuals were selected on the basis of age and gender to ensure a heterogeneous study population. Of these, 228 agreed to participate and completed the questionnaire.RESULTS: The majority of subjects felt that a physician who assists with suicide or performs euthanasia is capable of being a caring person (91% and 88%, respectively) and would still be able to offer emotional support to surviving family members (85% and 76%, respectively). Most also felt that a physician assisting in suicide or euthanasia would be as trustworthy as a nonparticipating physician to care for critically ill patients (90.5% and 84.6%, respectively). Five percent “likely would not” continue to see their physician if it was known that he or she assisted in suicide and 7.8% “likely would not” continue seeing their physician if it was known that this physician performed euthanasia. No individuals stated that they “definitely would not” continue seeing their doctor under either circumstance. Individuals who supported the ideas of physician-assisted suicide and euthanasia were more likely to think that a physician who assisted with suicide and euthanasia could perform well in the tasks noted above and would be more likely to continue seeing such a physician (p=.001)CONCLUSION: Participating in physician-assisted suicide and euthanasia does not markedly adversely affect the physician-patient relationship.

Genetic research, adolescents, and informed consent

The participation of adolescents in genetic research engenders unusual problems concerning the nature of their informed consent. In this study we analyze 70 consent documents collected from genetics investigators in the United States who conduct research with children and adolescents. We find that many consent documents do not reflect either the current or the developing ethical and legal standards for research with adolescents and that in many cases the documents are simply confusing or unclear. We make recommendations for change to reflect more adequately the changing perspective concerning the autonomous decision-making capacity of adolescents.

Choosing the Complete Life@@@Deciding for Others: The Ethics of Surrogate Decision Making@@@Abating Treatment with Critically Ill Patients

Book reviewed in this article: Deciding for Others: The Ethics of Surrogate Decision Making. By Allen E. Buchanan and Dan W. Brock Abating Treatment with Critically Ill Patients. By Robert F. Weir

Betty's Case: An Introduction

The case of Betty Wright offers a “good news/bad news” study on the care of dying patients by physicians and nurses in the late 1980s. The “good news” suggested by the case is that hospice care is an increasingly important part of medical practice in the United States, as is the recognition by an increasing number of health care professionals that the primary goal to be sought in caring for terminally ill patients (as well as other patients) is medical and nonmedical care that is appropriate in terms of patients’ medical conditions, preferences, and best interests. The “bad news” is, as the case description indicates, that “we have a long way to go” in meeting the goal of care that is appropriate to the circumstances, preferences, and interests of individual patients. Not all dying patients are as fortunate as Betty Wright was during the terminal phase of her life. In addition, the case provides an opportunity for professionals who have worked with dying patients and wrestled with the ethical and legal issues connected with death and dying throughout the post-Quinlan era to reflect on where we have been and where we may be going in terms of caring for persons who cannot be cured of the diseases and injuries that will be the causes of their deaths. Consequently, we asked Bernard Lo, James Childress, Alan Meisel, and Christine Cassel to write papers that would not be limited to case analysis, but would use the case as a springboard for observations about recent problems, current developments, and possible trends in the care of persons known to be dying. As indicated by the commentaries that follow, the case under discussion is both very common and quite uncommon. The case is common because of the large number of persons having lung cancer (150,000 persons in the United States), the inclination of the physicians in the case to use aggressive treatment options to combat the disease, the geographical distance between the patient and her \ children, and the absence of any litigation in the case. In addition, the case is common because many persons express preferences about life-sustaining treatment long before they may need such treatment, many critically and terminally ill patients have problems with pain and other symptoms brought on by their medical conditions, many patients have caring families who want to do what the patients would have wanted done in the clinical circumstances, many cases involve conflicts between physicians and nurses and between physicians and the relatives of patients, many critically il l patients are nonautonomous or at most have a fluctuating capacity to make decisions about their health care, and many decisions are made every day in hospitals and nursing homes to abate life-sustaining treatment. At the same time the case is atypical: not many patients have a physician or hospice-based social worker in the family, not enough patients with advanced cancer benefit from the compassion and professional skills of a hospice nurse, and not every physician is willing to follow the directions of another physician with another specialty living in another state regarding the medical care of a particular patient. The case of Betty Wright is instructive in a number of ways. First, it provides an example of a type of case that frequently occurs in contemporary medicine: a case in which decisions are made by surrogates on the behalf of critically ill but nonautonomous patients to abate the treatment( s) sustaining those patients’ lives, with the knowledge that the patients’ deaths will probably be hastened by these decisions. The case is particularly instructive in that it demonstrates the three forms that decisions to abate treatment can take: the decisions not to have chemotherapy and not to initiate radiation to the brain are examples of withholding life-sustaining treatment, the decision to vary the morphine dosage illustrates a decelerating plan of treatment, and the decision to stop radiation to the chest is an example of withdrawing lifesustaining treatment. Such decisions to abate lifesustaining treatment commonly have to be made by persons caring for critically and terminally ill patients, with the decisions to stop medical interventions that have already been started causing the greatest psychological and moral problems for the physicians responsible for the patients’ medical care.’ The Betty Wright case also illustrates the importance of planning for the possibility of treatment abatement, should medical circumstances ever arise that necessitate health care decisions being made o n behalf of a patient