Advance directives in Utah. Information from death certificates and informants.

BACKGROUND: Advance directives have been studied in different patient populations and institutions. Most reports have shown limited use and little medically observable effect. To our knowledge, no previous study has focused on the use of advance directives by individuals who have died or how their family members perceived the documents' effect. METHODS: We contacted informants listed on Utah Death Certificates from 1992 to estimate the prevalence and effect of advance directives. Eighty-two percent of 1398 informants we contacted agreed to our telephone interview. RESULTS: More than 50% of decedents reportedly completed an advance directive. Individuals older than 65 years (57.3%), women (58.1%), nursing home residents (63.4%), and hospice users (75.2%) were most likely to have had advance directives. Education, religion, religiosity, and location had no effect on prevalence. Most informants stated that advance directives had no effect on the decedent's care, but a minority felt they helped to limit treatment. Do-not-resuscitate orders were written more often for patients with advance directives. Feeding tubes were removed more often from decedents with living wills than from other decedents. Mechanical ventilatory support was not less frequent in patients with advance directives. CONCLUSIONS: Our study confirms others that found little evidence that advance directives affect life-sustaining treatments. In the infrequent situations when they apply, they may be more persuasive than family members in convincing physicians to limit treatment. We observed that survivors had 2 perceptions about advance directives, not emphasized in previous reports, that they seemed to limit treatment and to ease their burden of decision making.

Going early, going late: the rationality of decisions about suicide in AIDS.

Where assistance in suicide is readily available to those dying of AIDS, as in the west coast gay communities of the United States and in the Netherlands, we must examine the different roles of physicians and friends (including lovers, spouses, family members, religious advisors, members of support groups, and intimate others) in helping a person with AIDS decide about and carry out suicide. This paper makes a central assumption: that where assistance in suicide is available, it is the moral obligation of others to protect and enhance as much as possible the rationality of that choice. Four components are identified in a rational choice about suicide in AIDS-whether it is a choice for or against suicide. Phrased as questions a person with AIDS might ask him- or herself, they are: (1) "Is suicide an option I want to consider?" (2) "Shall I hold out for the chance of a cure?" (3) "How shall I time my suicide?" (4) "What weight shall I give to the welfare and interests of others?" Although physicians often make assertions relevant to (1), they are appropriately involved only in (3); and although friends or intimate partners often provide the patient with anecdotal information relevant to (3), they should be involved primarily in (1). In short, both physicians and friends often intervene in the wrong parts of choices made by a person with AIDS about suicide.

Patients' understanding and use of advance directives.

The Patient Self-Determination Act was implemented in December 1991. Before and after its implementation, we used a structured interview of 302 randomly selected patients to determine their awareness, understanding, and use of advance directives. Implementation of the Act did not have a major effect on these. Although more than 90% of patients were aware of the living will, only about a third selected the correct definition or the correct circumstances in which it applied, and less than 20% of patients had completed one. About a third of patients were aware of a Durable Power of Attorney for Health Care and chose the correct definition, and about half identified the correct circumstances in which it applies; less than 10% had completed such a document. Surprisingly, patients who said they had completed advance directives did not demonstrate better understanding of these documents. Our results indicate that many patients, including some who have completed advance directives, do not fully understand them. It may be unwise to regard these documents as carefully considered, compelling statements of patients' preferences. Appropriate responses to our findings include increased public education, revising state statutes to bring them into congruence with public perception, and expanding the dialogue between physicians and patients.

Physicians, partners, and people with AIDS: deciding about suicide.

In places such as The Netherlands and the US west coast, assistance in suicide has become a choice actually available to persons with AIDS. Hence, it is important to consider the "rational structure" of choices about suicide in AIDS. There are four principal levels of choice: (1) the question of active control over dying; (2) the question of holding out for a cure; (3) the choice of going early or going late; and (4) the question of what weight to give to the interests of others.

Dying in 559 beds: efficiency, 'best buys', and the ethics of standardization in national health care.

While a national health care system may be greeted with enthusiasm on many grounds, it poses substantial moral problems--not the least of which would be the clash between the 'standardization' of care for the sake of efficiency and the needs of individual patients. Such problems are best seen in the treatment of dying patients.

Rational suicide: how can we respond to a request for help?

For some persons who are facing terminal illness, severe permanent disability, or extreme old age, suicide may seem to be a rational choice. Suicide prevention services, however, do not provide for suicide as a sane, honorable choice in such circumstances. This paper identifies 17 specific considerations a mental-health professional may use to help such a person explore whether suicide would be rational or irrational. These considerations are formulated without antecedent bias towards prevention and without interpreting interest in suicide as evidence of depression or mental illness. Dying, severely disabled, and aged persons considering suicide on what seem to them to be rational grounds may thus trust and consult mental-health professionals about their plans.

Euthanasia: the way we do it, the way they do it.

Although the Netherlands, Germany, and the United States are alike in having aging populations who die primarily of deteriorative diseases, they face end-of-life dilemmas quite differently. In the United States, withholding and withdrawing of treatment are the only legally recognized means for easing dying. In Holland, voluntary active euthanasia is also practiced; in (West) Germany, assisted suicide is a legal option, usually outside the medical setting. This paper examines objections to these three practices, and observes the differences in the background cultures. Rather than reliance on any of the three, it argues that physician-assisted suicide in terminal illness is the practice most compatible with the United States' special characteristics.

Non-patient decision-making in medicine: the eclipse of altruism.

Despite its virtues, lay decision-making in medicine shares with professional decision-making a disturbing common feature, reflected both in formal policies prohibiting high-risk research and in informal policies favoring treatment decisions made when a crisis or change of status occurs, often late in a downhill course. By discouraging patient decision-making but requiring dedication to the patient's interests by those who make decisions on the patient's behalf, such practices tend to preclude altruistic choice on the part of the patient. This eclipse is to be regretted not just because widescale altruism has the capacity to provide important social goods and correct injustices in distribution, but for intrinsic reasons as well. It is argued that preserving the possibility of altruism obliges patients--and future patients--to make decisions about dying and other medical matters in advance, thus avoiding that displacement of decision-making onto lay and professional second parties which results in altruism's eclipse.

The least worst death.

KIE: The realities of "natural" death and the alternative of a least worst death are explored in this article about the dilemmas faced by terminally ill patients and their doctors. Treatment refusal, the only legally sanctioned means of avoiding medically-prolonged death, may lead to distressing physical conditions that destroy patients' hopes for a dignified death. By functioning as strategists of natural death, however, physicians could help patients selectively refuse treatments in a way that would produce a more comfortable, predictable, and peaceful death.^ieng