Long-Term Care Ethics
Ethical issues in long-term care decision-making
Long-term care decisions arise for elderly individuals and their families when the elder is no longer able to live independently. The loss of capacity for independent living is typically caused by changes in health that result in a decreased ability to care for oneself in the activities of daily living, such as cooking, eating, bathing, and toileting. These changes in health status can include dementia, paralysis resulting from stroke, or blindness. Rosalie Kane and Robert Kane, two of the world's leading authorities on long-term care, define it 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" (Kane and Kane, p. 4).
Long-term care decisions concern where the elder will live and what level of support he or she needs. Living options include staying in one's own home (with more support), moving in with one's relatives, such as children or siblings; or moving to a retirement center, group home, or nursing home. Support options include day care; services delivered to the elder in his or her home, such as meals-on-wheels; home services provided by family members (informal caregivers, in the language of gerontology); and home services provided by formal caregivers, such as visiting nurses. The range of services actually available to an elder will depend on his or her financial resources, as well as those of family members, and eligibility for public and private long-term care services and programs. Long-term care decisions should, therefore, not be equated with a decision to move from the elder's home to a nursing home.
Most long-term care services are provided to elders in the community setting by their family members. The common belief that older adults with long-term care needs are abandoned by their families to nursing homes is a myth with no foundation in fact. Families usually go to considerable lengths to provide these services as informal caregivers, often making significant personal, physical, psychological, and financial sacrifices in the process. These services can include preparing meals, regular visits to check on the elder's well-being and safety, and assisting with the activities of daily living—either in the elder's own home or in the family member's own home. These informal caregivers tend to be women who were in the workforce before the elder's long-term care needs led to the caregiving role. Under federal law, there is a limited period of time that employees can take unpaid time off from work to care for an elderly family member without risk of losing their jobs. In order to replace lost income, either from unpaid time off or reduced hours of work, the husbands of these women (if they are married) and teenage children in the household often seek additional or new employment. Thus, the provision of long-term care by informal caregivers is both direct and indirect in its impact on families.
Long-term care decisions are made under constraints imposed by public policy regarding the public funding of long-term care services. These constraints concern eligibility for funding of long-term care services, especially those supported with local, state, and federal tax monies. There is an ongoing debate about whether these constraints satisfy the ethical requirements of various concepts and theories of justice.
A number of ethical issues arise in the long-term care decision-making process, no matter the policy constraints on that process. The order in which these issues are presented here should not be regarded as a temporal order. The complexity and urgency of long-term care decision-making mean that these issues can arise in any order and that the order in which they do arise is usually not under anyone's control.
The first ethical issue in long-term care decision-making concerns the nature and significance of the elder's diminished capacity for self-care and independent living. Older adults and their family members may not agree on the seriousness of an event, such as a fall from which an elder takes several hours to get up from the floor and call for help, or a fire in the kitchen caused by a cooking pot left on a lit burner on the stove. The elder may interpret such events as minor in nature, whereas a daughter summoned to an emergency room or by a fire department may think that the event is quite serious. They may also not agree on whether such events mean that a change in the elder's living arrangements (location and level of support) is needed. The elder may think that he or she can continue to live at home alone or to cook for himself or herself without supervision.
The second ethical issue concerns whether an older adult should continue to live at home. For elders who are married, this option can raise serious questions about the ability of the spouse to provide informal long-term care services. The elder's spouse may be ill or have significant reduced functional status—he or she may be too frail to help with such activities as moving from the bed to bathroom or even helping to lift his or her spouse into a sitting position. Adult children may have major responsibilities within their own families, e.g., taking care of their own children and providing financial security for them. Such circumstances raise the issue for informal care-givers of setting ethically justified limits on their obligation to provide informal long-term care services.
This is an important ethical issue, because many family members see only two alternatives: doing everything, which may be beyond their ability, or doing nothing, which may make them feel hard-hearted and selfish. There is a large middle ground that has two ethical bases. The first is setting limits based on the need to fulfill obligations to others, such as one's own children. The second is setting limits based on legitimate self-interest, such as avoiding the predictable and preventable loss of one's own health from the physical demands of long-term caregiving.
A third, and directly related, ethical issue concerns the obligation of the elder to recognize and respect the limits that family members may justifiably set on their caregiving responsibilities. This obligation is based on the general obligation that all of us have to avoid harming others without their agreement. This obligation means that none of us has an unlimited claim on the time, attention, energy, or resources of another individual. Elders with long-term care needs are no exception.
These two ethical issues—setting limits by family members and the elder's obligation— need to be negotiated by elders and their family members in the context of the long-term care needs of the elder and the available options for meeting those needs. Setting such limits is a matter of careful reflection and considered judgment; there is no ready formula for identifying precisely where to set limits. A major responsibility of health care and social-service professionals involved with older adults and their family members in long-term care decision-making is to help them negotiate these limits in ways that are acceptable to the involved parties.
A fourth ethical issue arises when the decision is made to change either the elder's place of living or support services—but especially the former. Any such change means a loss of autonomy. This loss can involve major "either-or" matters, such as whether to leave one's home of many years and move to a nursing home. These have been called nodal decisions. This loss can also involve smaller, more everyday decisions such as maintaining one's privacy or having one's favorite possessions ready to hand, which have been called interstitial decisions. The nodal decisions of long-term care tend to receive the most attention—with interstitial decisions often neglected—especially when long-term care decisions are urgent, as they can become after a prolonged, unexpected hospitalization. In order to respect the elder's autonomy in its full dimensions, and therefore to maintain the elder's dignity, the long-term care decision-making process should consider relevant interstitial decisions that are implicated in nodal decisions. Thus, if it is agreed that an older adult will move from his or her own home to the home of an adult child, many interstitial decisions remain to be made, such as the time for meals, starting and ending one's day, and respecting the privacy of all members of the family.
A fifth ethical issue concerns the balance to be struck between independence and safety, which can sometimes be understood to be mutually exclusive. Family members and health care professionals can tend to give priority to safety, especially after serious health- or life-threatening events such as wandering out into a busy intersection. Elders, it will come as no surprise, tend to give priority to independence. The conflict between safety and independence is one of the defining ethical features of long-term care decision-making.
Bart Collopy (1995) has suggested a very useful way to respond to the potential for conflict between independence and safety: they should not be seen as mutually exclusive but as the end-points of a continuum. Safety involves not just physical safety, but also psychological safety. Thus, staying in one's home may risk physical safety but protect, and even enhance, psychological safety. Independence depends to a considerable degree on one's health status, and unnecessary loss of health can and does lead to loss of independence. Both safety and independence have health, psychological, and social components, so it does indeed make conceptual and practical sense to see them in terms of a continuum of ethical concern rather than an "either-or" forced choice in which one of the two will be protected only by sacrificing the other. The response to potential conflict between the two should therefore be, first, to recognize their complex nature and how they often overlap, and, second, to negotiate compromise in which both concerns are protected, though in a balanced fashion. It will be important in some cases for family members to appreciate the importance of sacrificing physical safety in order to protect psychological safety and a sense of independence. It will be as important in other cases for the elder to appreciate the need to preserve physical safety and health as the only way to protect remaining independence from further preventable loss.
Long-term care decision-making, in its ethical aspects, should be understood in terms of a process of mutual decision-making by elders and family members, with the support of health and social-service professionals when they are involved. There is no algorithm into which the ethical issues identified above can be "plugged," with the answer simply "cranked out." The ethical issues involved in long-term care decision-making are matters for negotiation and, often, complex compromises by elders and involved family members. Long-term decisions should, therefore, not be regarded as permanent. Moreover, the health and social factors that shape long-term care decision making can change. The elder's condition can change, either for the worse or the better. The ability or willingness of informal caregivers to continue to provide informal long-term care services can change, and policy constraints can also change. As a consequence, elders, involved family members, and health care and social-service professionals should all appreciate that any long-term care arrangement decided upon involves a trial of a change in where the elder lives and/or the level of support. The durability of such a trial, by its very nature, cannot be known in advance. Thus, as circumstances change, it is sometimes necessary to repeat the long-term care decision-making process in response to changed circumstances. This reality is often a source of frustration and distress for elders and family members alike, calling for sustained support by professionals, especially those involved in provisions of formal long-term care services.
LAURENCE B. MCCULLOUGH
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