Mrs. G, a 79-year-old widowed, white woman, has been admitted to the short-stay unit of a comprehensive geriatric health care center after discharge from the hospital for hip replacement. She has been discharged to the short-stay unit as part of a contract arrangement between the hospital and the geriatric health care center. Her care plan includes postsurgical follow-up, physical therapy, and planning for the future. Her medical problems include mild heart failure and moderate visual impairment, secondary to macular degeneration. She also has moderate right-side hearing loss. Her poor eyesight contributed to the fall that resulted in her broken hip. This fall occurred at home, where Mrs. G lives alone. She has lived in this home for 50 years and alone in this home since her husband died 10 years ago. She has three children, her oldest, a son, and two daughters, all of whom are married with children of their own. She is closest to her youngest child, who is 49 and has three teenage children of her own. Both she and her husband are working and have started a savings plan to send their three children to college.
Dr. S, the medical director of the short-stay unit, sees Mrs. G each day, and on the third day of her admission, after she has gotten oriented and settled into the new routine after her hospital stay, Dr. S asks her about what she is planning to do when she has completed rehabilitation and is ready to leave the short-stay unit. Mrs. G says that she has begun to look into nursing-home placement and only that morning had asked the unit social worker to get her information on facilities in the area.
Later that day Dr. S notices Mrs. G's daughter coming out of her mother's room, appearing very upset. Dr. S inquires if there is any way that he can be of assistance. Mrs. G's daughter says that she has just learned from her mother that she plans to move to a nursing home when she is ready to be discharged from the short-stay unit. Mrs. G's daughter tells Dr. S—and makes it clear that she intends to tell the unit social worker the same thing—that this is a terrible plan and that she will not hear of her mother going to a nursing home because ''it would kill my mother.''
It is not hard to see, in this brief case description, the seeds of interpersonal and intrapsychic stress that are beginning to occur and, unless they are addressed prospectively in an effective fashion, about to get worse. Dr. S and the unit social worker, as well as Mrs. G, her daughter, her other children, and their families, are in a position to do something about these potential problems. The decisions that they are about to make could make things worse or better. This chapter is about such cases and the difficult decisions that they prompt in the lives of elders, their family members, and health care professionals every day. Put more precisely, this chapter is about the ethical issues that arise when elders and their family members make long-term-care decisions.
Long-term care has been described as ''a set of health, personal care and social services delivered over a sustained period of time to persons who have lost or never acquired some degree of functional capacity'' (R. A. Kane & R. L. Kane, 1987, p. 4). This chapter concerns long-term-care decision making by elders, family members, and gerontologists and geriatricians who assist them in the decision-making process. We will address long-term-care decision making at what can usefully be termed the ''micro'' level of individuals, of everyday life. Obviously, macrolevel considerations of public policy and of institutional practice and policy affect the micro level of decision making about long-term care.
Long-term-care decision making involves millions of elders, family members, and professionals every year in the United States and other countries. In any national or cultural setting, long-term-care decision making has the following characteristics, which must be addressed by ethical analysis and in practice: (a) where an elder with long-term care needs should live, for example, whether the elder should continue to live in his or her home or apartment or move to congregate housing or even a nursing home; (b) what sort of care the elder needs and ought therefore to have, for example, stimulation that a day-care program might provide or nutrition from a meals-on-wheels program; and (c) who ought to provide either the location of long-term care or long-term-care services. Long-term care thus involves a wide spectrum of institutional sites and services, as well as domestic sites and personal services provided by family members and other ''informal'' caregivers.
Consider, for example, the decision made by Mrs. G to move to a nursing home. Mrs. G will then face decisions about whether to sell her home, what possessions she should bring with her to the nursing home, whether she will seek a single or double room, what activities of the nursing home she will embrace, with whom among her fellow residents she will strike up new relationships, and so on. Her daughter, we saw, prefers that her mother not move to a nursing home. As it turns out, she tells Dr. S and the unit social worker that she is very concerned that her mother not go back home and live alone. Perhaps her mother could move in with her and her family, she tells the unit social worker later that same day. She, her husband, her children, and her mother will then confront many decisions about such matters as which room her mother will occupy, finances, where pets will go, family work schedules, living space, and meal contents and schedules. The decision-making process can be further complicated by the elder's actual or perceived diminished ability, or even inability, to make decisions as a result of physical or mental changes that have been occurring. The elder may thus in some cases not be able to participate meaningfully in the decision-making process. Decision makers also grapple with conflicting interests, uneven distribution of caregiving burdens, especially by gender, uncertain senses of spousal and filial obligations and their limits, lack of clarity about roles and power, and emotional conflicts between and within decision makers. The people involved in the process can change over time. Decision makers may also hold and act on sharply different definitions of the elder's problem and needs and of their own capacities and willingness to meet those needs.
Long-term-care decision making thus frequently becomes a considerably, though not hopelessly, complex process because it involves a series of medical, social, and personal decisions, made incrementally over time by multiple decision makers, rather than a single, well-defined, time-bound decision made, as in acute care, by the dyad of physician and patient. The conceptual and ethical dimensions of microlevel long-term-care decision making have begun to attract the attention and investigation of scholars in gerontology, geriatrics, and bio-ethics (McCullough & Wilson, 1995).
Long-term-care decisions are, at their heart, ethical decisions. They involve ethical values such as preserving good relationships within one's family, showing respect and gratitude toward one's parents, and protecting elders who are vulnerable from unnecessary harm and injury. These decisions also involve important ethical principles such as beneficence and respect for autonomy. Any adequate account of the ethical dimensions of long-term-care decision making needs to take account of these values and principles. Doing so is the primary purpose of this chapter.
To this end we provide in this chapter a preventive-ethics approach to long-term-care decision making. We begin with a review of developments in bioethics that set the stage for the emphasis on preventive ethics. We then briefly review current policies and legislation in the United States that set the context for and act as constraints on long-term-care decision making. We next provide a brief comparative examination of policies in other countries to underscore the lack of a coherent approach to long-term care in the United States. We then provide an ethical analysis of acute-care versus long-term-care decision making. We go on to identify the implications of this ethical analysis for practice. On the basis of the preceding sections, we set out a stepwise, practical preventive-ethics approach to long-term-care decision making. This process incorporates the values and principles mentioned previously and shows how they can be effectively addressed in geriatric and gerontologic practice. We close with a consideration of the policy implications of this approach to long-term-care decision making.
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