Terminology, Definitions, and Other Barriers to Communication |
Discussions about end-of-life issues can be difficult for many reasons. First, dying and death are not openly discussed in many cultures. Second, the rapid pace of change in medical technology has made it difficult to develop a standard terminology for discussing dying and death. Third, dying and death are so rooted in cultural customs and individual beliefs and behaviors that a universal vocabulary has not evolved. The same words have different meanings to different people. Fourth, issues of life and death are deeply personal, tapping our most basic human values.
Discussion about end-of-life decisions are particularly difficult because of a lack of consensus about descriptive terminology. Different words may be used by different writers for the same concept, or the same terminology may be used but with a variety of meanings. Many terms are straightforward and utilized in a relatively uniform and systematic way in the literature. Other terms are used selectively to frame arguments or positions. Roy and McDonald (1998) have noted that the language used to describe end-of-life decisions that shorten or do not prolong life can "signify opening moves in a moral debate" (p. 123). Two commonly used terms that frequently generate confusion or controversy are "hastened death" and "assisted suicide."
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The Term "Hastened Death"
Some authorities believe that the psychosocial, cultural, medical, and ethical issues associated with all end-of-life decisions affecting the time of death are similar. They use the term "hastened death" to refer to a variety of interventions including voluntary cessation of eating and drinking, withholding and withdrawing life-sustaining treatment, the double effect phenomenon, terminal sedation, assisted suicide, and voluntary (but not involuntary) euthanasia (Cantor & Thomas, in press). Others limit the term to include only double effect, terminal sedation, and assisted suicide (Alpers & Lo, 1999). Still others use the term to include only assisted suicide and euthanasia (Block & Billings, 1998). Others do not use the term at all but prefer to describe the specific intervention under discussion.
Differences in the use of the term "hastened death" arise from disagreements about what types of interventions can rightfully be likened to others. For example, some would argue that withdrawing life-sustaining treatment can be placed on the same continuum as assisted suicide because they both speed up the dying process. Others would argue that to place such terms under the single rubric of hastening death creates an unacceptable perception of permissibility for certain interventions like assisted suicide that should never be allowed. In this view assisted suicide is sharply distinguished from "letting the person die" from the underlying disease process by, for example, withholding or withdrawing treatment. In general, differences in use of the term hastened death represent different views about what types of interventions are permissible under what circumstances as well as different views about the potential for abuse associated with different end-of-life interventions.
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The Term "Assisted Suicide"
In the United States, the term "assisted suicide" commonly refers to situations in which people with incurable, and ultimately terminal, illnesses, request the help of others in ending their lives. Assisted suicide has been defined by the American Association of Suicidology (1996) as "the deliberate and knowing provision of information, the means, and/or help to another person for an act of suicide" (p. 6). Those who reject the use of the word "suicide" in end-of-life contexts focus on at least two major points. First, they argue that the use of the term may be an inappropriate extension of the model of suicide (Sullivan & Youngner, 1994). According to this view, "the cutting short of a viable life, as generally connoted by the term 'suicide', differs from a terminally ill patient's attempt to exercise some control over their dying process" (Farrenkopf & Bryan, 1999, p. 245). They suggest that the traditional view of suicide as a self-destructive act that is motivated primarily by emotional distress or psychopathology does not apply to all situations in which a terminally ill person wants to exercise control over the timing and manner of death. A second argument of those who do not like the term is that most of the suicidology literature is based on the contention that all people who want to die have significant psychopathology and should be prevented from dying (Society for Health & Human Values, 1995). Those who argue against the use of the term "assisted suicide" point to evidence that indicates that some decisions to die are not motivated by clinical depression or other psychopathology (MacDonald, 1999). Third, in general, those who view helping an incurable, terminally ill person to die as a legitimate issue to be considered along with other end-of-life decisions believe that using the word "suicide" in the end-of-life context may negatively bias discussion and decision-making. For example, The Oregon Death with Dignity Act (1995) states that "under the Act, ending one's life in accordance with the law does not constitute suicide." The Act specifically prohibits euthanasia, where a physician or other person directly administers a medication to end another's life.
Those who prefer the term "assisted suicide" in the context of end-of-life decision-making see the action as qualitatively different from other medical decisions that may affect the time of death. First, they assert that the suicide prevention model is applicable even at the end of life since there is evidence that terminally ill people who want to die are clinically depressed (Chochinov et al., 1995, Canetto & Hollenshead, 1999). They hold that the term "assisted suicide" carries implications for prevention and promotes caution in responding to requests. Second, they argue that incurability and terminal status are hard to diagnose definitively. Third, they argue that requests for assisted suicide can almost always be addressed by exploring and treating unmet needs of dying people (Emanuel, 1998). They point out that there are higher costs associated with decisions leading to death because they are irreversible and subject to abuse and to medical error. Fourth, some equate assisted suicide with killing. Therefore, they believe that using the term assisted suicide or physician-assisted suicide is the most accurate descriptor that does not obscure, embellish, or use euphemisms for what is happening.
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Futility
Perhaps the most difficult decisions confronting people at the end of life are those about discontinuing life-extending treatment. Frequently, in the course of caring for a critically ill person, it may become apparent that further intervention will only prolong the dying process and not improve quality of life. Decisions to withhold or discontinue treatment are determined by a variety of factors, including judgments of medical futility and the emotional status and coping styles of the family members and the dying person. At that point, additional treatment is often described as futile. The concept of medical futility takes shape in sociocultural and interpersonal contexts, and conflicts about whether a situation is futile may arise for several reasons. Family members may disagree about future treatment or may oppose the physician's recommendation to discontinue life support. The physician may want to continue treatment and be opposed by either the family or other medical professionals. Legal or ethical issues may also play a role in the decision to stop or maintain life supports. Issues of resource allocation can also influence judgments of futility and life-extending care. Some argue that discontinuation of futile care is good for individuals, families, and society. Others have countered that costs may be a primary motive behind assessments of futility, which disproportionately discriminates against dying persons with limited resources.
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Advance Care Directives
Because decisions concerning futility often involve people who lack the capacity to understand their medical situation or communicate their wishes, there has been a movement to encourage everyone to create advance directives about their medical care while they are still competent. The intention is that by getting a person's desires about end-of-care in writing or by designating a health care proxy, the complexities of making decisions when the dying person's judgment is impaired by the physical and emotional effects of the illness would be reduced. Examples of advance care directives include descriptions of circumstances in which treatment should be received or refused, what extraordinary measures (if any) should be taken to preserve life, and what kind of pain management is wanted. Some of these decisions may impact the time of death but they generally call for widely accepted, legal components of end-of-life care, such as withholding or withdrawing life-sustaining treatments.
It is important to note that advance directives are not without their problems or limitations. Some of the common issues cited in the literature include:
- Few people prepare advance directives, in part because of a generalized reluctance to face death;
- Even if people do have them, their wishes may not be followed;
- The kind of planning for death which is required in advance directives goes against the values of many cultural and religious communities, including the perceived duties of dying persons and their families;
- Individual preferences for life-sustaining medical treatments are only moderately stable within the short term (up to six months) and are even less stable over longer periods;
- Healthy individuals appear to be unable to predict their own preferences under states of impaired health;
- Substantial fluctuations in the will to live have been documented in terminally ill people in palliative care settings;
- Among the factors that appear to play a role in the refusal of life-sustaining treatments are depression and family support;
- Concerns about costs influence the preferences of individuals and family members about life-extending measures.
Health care providers must be sensitive to the limitations of an advance directive for a particular individual over time, the need for ongoing exploration of the desires and needs of dying people and their loved ones, and the likelihood that such directives may be in conflict with some people's values and traditions.
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References
Alpers, A., & Lo, B. (1999). The Supreme Court addresses physician-assisted suicide. Archives of Family Medicine, 8, 200-205.
American Association of Suicidology. (1996). Report of the Committee on Physician-Assisted Suicide and Euthanasia. Suicide and Life-Threatening Behavior, 26(Suppl.), 1-19.
Block, S. D., & Billings, J. A. (1998). Evaluating patient requests for euthanasia and assisted suicide in terminal illness: The role of the psychiatrist. In M. D. Steinberg, S. J. Youngner (Eds.), End of life decisions: A psychosocial perspective (pp. 205-233). Washington, DC: American Psychiatric Press.
Canetto, S. S., & Hollenshead, J. (1999). Gender and physician-assisted suicide: An analysis of the Kevorkian cases, 1990-1997. Omega, 40, 165-208.
Cantor, N. L., & Thomas, G. C., III. (in press). The legal bounds of physician conduct hastening death. Buffalo Law Review.
Chochinov, H. M., Wilson, K.G., Enns, M., Mowchun, N., Lander, S., Levitt, M., & Clinch, J. (1995). Desire for death in the terminally ill. American Journal of Psychiatry, 152, 1185-1191.
Emanuel, L. L. (1998). Facing requests for physician-assisted suicide: Toward a practical and principled clinical skill set. JAMA, 280, 643-647.
Farrenkopf, T. & Bryan, J. (1999). Psychological consultation under Oregon's 1994 Death With Dignity Act: Ethics and procedures. Professional Psychology: Research and Practice, 30, 245-249.
MacDonald, R. (1999). Physician-assisted rational suicide. In J. L. Werth, Jr. (Ed.), Contemporary perspectives on rational suicide (pp. 107-113). Philadelphia:
Taylor & Francis.
Oregon Death with Dignity Act (1995). Or. Rev. Stat. ßß 127.800 - 127.995.
Roy, D. J. & MacDonald, N. (1998). Ethical issues in palliative care. In D. Doyle, G. W. C. Hanks, & N. MacDonald (Eds.), Oxford Textbook of Palliative Medicine (2nd ed.) (pp. 97-138). Oxford: Oxford University Press.
Society for Health and Human Values Task Force on Physician-Assisted Suicide (1995). Physician-assisted suicide: Toward a comprehensive understanding. Academic Medicine, 70, 583-590.
Sullivan, M. D., & Youngner, S. J. (1994). Depression, competence, and the right to refuse lifesaving medical treatment. American Journal of Psychiatry, 151, 971-978.
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