II. NURSING HOMES

The decision to enter a nursing home is the most wrenching outcome of long-term-care decision making. It changes almost every aspect of the life of an elder, who moves to new surroundings, may acquire a perfect stranger as a roommate, and must adhere to the nursing-home schedule. The either/or nature of the decision and the move to what has been described as a "total institution" (Lidz, Fischer, and Arnold) marks the decision about nursing-home admission as a "nodal" decision (Agich, 1993, 1995).

A nursing home is an institution in which persons, usually elderly (sixty-five years of age and older), live and receive nursing care and supervision. The provision of nursing care and supervision differentiates nursing homes from other senior residences; the lack of advanced medical and surgical services, and the fact that a nursing home is also a residence, differentiate it from a hospital. At any time, about 5 percent of those in the United States over sixty-five years of age are in nursing homes, many more than in acute-care hospitals. Over 40 percent of those over sixty-five will spend at least some time in a nursing home (Kemper and Murtaugh). Residents of nursing homes tend to be old, poor, and sick; younger patients, often with mental disorders, chronic conditions such as HIV-related disease, or post-traumatic conditions, account for a relatively small number. Nursing-home residents are disproportionately female and white.

Most nursing-home residents have trouble performing normal daily activities, such as bathing and dressing. They often have multiple long-term problems, such as confusion or walking difficulties; these changes frequently precipitate nursing home admission, when they overwhelm informal support systems. Nursing homes are increasingly used to provide further care after hospital discharge (Densen).

Ethical problems in nursing homes differ in several ways from those seen in other settings. Decision making often involves multiple related decisions made over time. There are multiple participants, and family members are often intimately involved. Many nursing-home residents are unable to make or communicate decisions, resulting in reliance on proxy decision makers. Institutional policies and practices act as powerful constraints on the autonomy of decision makers (Lidz et al.; Kane and Caplan, 1990).

Demographic changes in developed countries that have led to an increased need for nursing homes include an increase in the aging population in both absolute numbers and percentage of the population, nuclear rather than extended families, and more women in the work force. The emphasis on autonomy and the fear of lawsuits on the part of healthcare providers and institutions may be unique to the United States, but basic ethical conflicts between respecting personal autonomy and ensuring personal safety occur in nursing homes everywhere in the world.

Reimbursement

In the United States, nursing-home care is paid for almost entirely by Medicaid and "self-pay," with Medicare and long-term care insurance accounting for only a small percentage. Over two-thirds of those in nursing homes for more than six months are covered by Medicaid. Medicaid reimbursement is usually low, and nursing homes may react by raising the rates for other payers to subsidize the Medicaid population, maximizing the number of self-payers, or minimizing the amenities offered.

Asset management, in which assets are shielded or transferred while the elder becomes eligible for Medicaid, raises several questions. Is it ethically justified for relatively well-off elders to use programs meant for the poor? Alternatively, should those elders have to spend all their resources in the last few months or years of life? Several state programs have been developed in response to these questions, in which elders who purchase long-term care insurance are covered by Medicaid when their insurance runs out (Mahoney and Wetle).

Major questions regarding reimbursement remain. Who should bear the responsibility for the long-term care of elders? What are the ethically justified means of financing nursing-home care? What mix of long-term care settings should be offered as a matter of public policy? What incentives to improve care ought to be provided to those who care for nursing-home residents? In the United States, changes in healthcare policy in the future may affect reimbursement for long-term care, including nursing-home care.

The Admissions Process

A sustained effort by families to keep elders at home or in other community settings usually precedes nursing-home admission. Problems leading to admission may include increasing confusion, decreasing ability to care for oneself, and collapse of social supports.

Pertinent questions concerning nursing-home admission include "Who is making the decision?" and "Who ought to participate in making the decision?" The circumstances in which decisions are made exert powerful influence. Thus, a hospital may put pressure on the physician and family to have the patient discharged to a nursing home after acute problems are resolved. Involved parties may have conflicting interests and obligations. For example, family members may be involved as overburdened caregivers, concerned relatives, and proxy decision makers. These factors should be identified to prevent ethical conflict in the decisionmaking process.

Many conflicts arise between respecting the elder's autonomy and protecting his or her safety (Collopy). Participants may disagree about whether the elder's safety is actually threatened (elder: "I'm all right, I've just tripped once or twice"; versus family: "She falls all the time. I'm terrified she's going to break her hip"). This has been called the problem of "competing realities" in long-term care decision making (McCullough, et al.). Participants may also disagree about the relative safety of the nursing home. Healthcare professionals and family members may perceive the nursing home as a safer environment than it is. Confusion, falls, and increased dependency are common sequelae of nursing-home admissions. However, those admitted to nursing homes are often very frail, and it is usually not clear whether they would have fared better at home.

The nursing home itself challenges the elder's autonomy. Lack of privacy, regimented schedules, and uniform treatment of residents without regard for their wishes or interests are common. Autonomy is also constrained by other factors, including mental and physical disorders that limit the ability to make and carry out decisions, the elder's obligations to respect the legitimate interests of caregivers and family members, and the lack of a stable public policy establishing the obligations of society to elders and of elders and their families to society (Jecker, 1991, 1995). The ethical complexity of long-term-care decision making throws into question the relevance of the acute-care model of decision making, with its emphasis on patient autonomy (Agich, 1993, 1995; Hofland, 1990; McCullough et al.). A distinctive ethic may be required for long-term care, perhaps based on mediation and negotiation of opposing views (Collopy, Boyle, and Jennings; Moody).

Decision Making in Treatment

After admission to a nursing home, everyday issues such as phone access, roommate selection, and opportunity for spiritual growth must be addressed, requiring mediation among several concerns: respect for the elder's autonomy, the obligations of residents to each other, the institution's legitimate interests, and the family's role in decision making (Agich, 1993; Kane and Caplan, 1990, 1993). The task for nursing homes is to identify meaningful possibilities for the elder's exercise of everyday autonomy in the context of these legitimate constraints on autonomy.

Under the Patient Self-Determination Act (PSDA), implemented in 1991 in response to the case of Nancy Cruzan in Missouri, advance directives must be explained to the patient upon admission. The impact of the PSDA on the low rates of advance directives for nursing-home patients in the 1990s (Gamble, McDonald, and Lichstein) is not yet apparent. Issues requiring decision making that often arise in nursing homes include hospital transfers, artificial feeding, antibiotic use, amputation, and the use of restraints (Besdine; Volicer et al.).

Discussions of treatment choices should involve the resident, if he or she is able to participate, and family members or designated proxy decision makers, if the elder is unable to participate or desires their involvement. Although family members may not make the same choice the elder would make, many elders would still rather have family members make decisions for them (Menikoff, Sachs, and Siegler). Demented patients may be able to make some decisions about their healthcare. Decision-making capacity should be assessed by the physician relative to the particular decision that must be made. For example, a patient with moderate dementia might be able to decide not to have a leg amputated, and yet be unable to remember to take her medications without being reminded.

Competent patients or surrogate decision makers have the well-established right to refuse any treatment, though there is debate about whether they have the right to demand any treatment (Brett and McCullough). Trying a therapy for a time to evaluate its effectiveness may be a better choice than simply using or not using a treatment. However, institutions and caregivers, who have traditionally been reluctant to stop a treatment once begun, must be flexible if this approach is to succeed. Before such a trial of therapy, specific goals (such as expected improvements in status) should be agreed upon.

Conflict between family members and staff is often exacerbated by serious illness. For example, a family member who has not previously been involved in the patient's care may demand inappropriately aggressive care (Molloy et al.). When family members or staff members cannot reach a decision without significant disagreement, they may refer the matter to a nursing home ombudsman, an ethics committee or consultant, or, if there are issues of neglect or abuse, initiate a state inspection. Clerics may be helpful in addressing conflicts arising out of religious beliefs held by various participants. Legal proceedings are usually a last resort.

Many nursing-home residents with severe dementia who are not able to eat are kept alive with feeding tubes; many of these persons might not have wished to be kept alive under these circumstances. Legal decisions in U.S. courts in the 1980s and 1990s treated the provision of nutrition and hydration as medical decisions and recognized that artificial feeding is not always obligatory. However, withholding of nutrition poses special problems for some because of the special standing of "food and water" in human life. Many nursing-home policies require the use of artificial feeding if the resident's weight or oral intake falls below specified guidelines, even if this is against the patient's or family's wishes. This default position of artificial feeding is problematic in light of recent studies showing that feeding tube placement for administration of nutrition is associated with very low survival rates, and that it does not improve survival in patients with advanced dementia (Finucane, Christmas, and Travis; Mitchell and Tetroe; Rudberg et al.). Policies requiring artificial feeding may be questioned on both ethical and legal grounds. When nursing-home residents develop serious illness requiring treatment not available in the nursing home, transfer to the hospital becomes an issue. If a decision to limit medical intervention has been made, transfer may be unnecessary. Such decisions are best made well in advance of a crisis (Volicer et al.). When patients are transferred, advance directives written in the nursing home may not be sent to or considered valid by the hospital, and emergency services and other treatment unwanted by the elder or family may be given. Nursing-home administrators and physicians need to address this problem of the "portability" of advance directives.

Restraints

Restraints are commonly used in nursing homes to prevent falls and injuries to the patient and others, to prevent wandering, and for behavioral problems. Restraints can be physical (e.g., vests or wrist restraints) or chemical (e.g., drugs that alter behavior). Restraints may be used to protect the patient or for the convenience of the staff and can cause adverse physical and psychological outcomes, including death. Less use of restraints enhances the autonomy of nursing-home residents and several studies show either no change or a decrease in the risk of falls and injuries. However, restraint-free environments are often opposed due to inadequate staffing levels, fear of litigation, and the weight of traditional practice in the United States. The informed-consent process should address the benefits and risks of a restraint-free environment versus restraint use.

Research

Research in nursing homes (for example, into the treatment of urinary incontinence) may contribute to the quality of life of nursing-home residents. However, nursing-home research is complicated by problems of obtaining permission from nursing-home administrators to do such research, obtaining adequate informed consent or proxy consent in this vulnerable population, and ensuring privacy and confidentiality (High; Sachs and Cassel). Professionals should balance the protection of this vulnerable population with an accurate assessment of each elder's ability to give consent, and should allow those who are able to consent to participate. Proxy decision makers should consider what is known about an elder's preferences as well as the benefits, risks, and need for the research.

Staff Concerns

Nursing-home staff perform difficult, frustrating tasks, are usually poorly paid and poorly trained, and are often criticized by clients, family members, or better-paid staff members who do other jobs. Staff turnover is high in most nursing homes, affecting continuity of care and staff-elder relationships. Staff members are also often people of color, in contrast to nursing-home residents, which can lead to a mutual lack of understanding and, on occasion, to racist remarks and abuse from elderly residents or their families.

Staff members who provide regular personal care often develop strong emotional ties to residents; they are exposed daily to the outcomes of treatment choices and may disagree with patients, family members, or healthcare professionals about treatment choices. Information from staff members about the patient's wishes should be considered by those responsible for the patient's care.

Local, state, federal, and accrediting requirements and regulations pose ethical challenges to administrators in allocating the scarce resource of staff time. Complying with these regulations absorbs significant staff time and resources, diminishing the time and energy staff can devote to the care of residents. The worst institutions are unlikely to be caught, and the best are likely to spend substantial amounts of time on paperwork that does not clearly contribute to care. In addition, regulatory overemphasis on the safety of residents may restrict the autonomy of elders (Lidz et al.).

Death and Dying

A common cause of death in nursing homes is an infection or another acute illness superimposed on a chronic or progressive illness. Often, patients or family members, together with physicians and nursing home staff, have decided not to treat such illnesses aggressively. Many terminally ill patients in nursing homes are eligible for the Medicare hospice benefit. Hospice care may ensure that these patients receive improved treatment of pain and other symptoms; it may also make it easier for the family and staff to accept care focused on maintaining patient comfort rather than on treating disease. Hospice units have been developed in nursing homes; some have been designed specifically for the care of severely demented patients (Volicer et al.; Keay and Schonwetter).

Cardiopulmonary resuscitation (CPR) initiated in nursing homes or in seriously ill patients is rarely successful (Applebaum, King, and Finucane). Nursing homes may be justified in not offering CPR because of the very low probability of success. In any case, patients and family members should understand that CPR is only an attempt at resuscitation with little likelihood of success. "Do not resuscitate" (DNR) orders should not be equated with "do not treat" orders. Decisions about specific treatments should be discussed and well documented in advance.

When death is imminent, many nursing homes transfer the resident to a hospital or contact emergency medical services so that death can occur elsewhere. This may be contrary to the elder's and the family's wishes. Most emergency medical service protocols require cardiopulmonary resuscitation to be attempted, which may be traumatic to the staff and family.

Conclusion

The bioethics literature tends to typify ethical conflicts among people as involving a clash between beneficence and respect for an individual's autonomy. Nursing-home ethics is far more complex and subtle, both intellectually and practically; it includes the obligations of elders to family members, other residents, staff, and institutions; the management of scarce resources, especially in response to external constraints; the limits of caregiving obligations on the part of family members and nursing-home staff; and the anticipation and prevention of the ethical problems discussed in this article.

jill a. rhymes

laurence b. mccullough (1995)

revised by authors

BIBLIOGRAPHY

Agich, George J. 1993. Autonomy and Long Term Care. New York: Oxford University Press.

Agich, George J. 1995. "Actual Autonomy and Long-Term Care Decision Making." In Long-Term Care Decisions: Ethical and Conceptual Dimensions, ed. Laurence B. McCullough and Nancy L. Wilson. Baltimore: Johns Hopkins University Press.

Applebaum, Gary E.; King, Joyce E.; and Finucane, Thomas E. 1990. "The Outcome of CPR Initiated in Nursing Homes." Journal of the American Geriatrics Society 38(3): 197–200.

Besdine, Richard W. 1983. "Decisions to Withhold Treatment from Nursing Home Residents." Journal of the American Geriatrics Society 31(10): 602–606.

Binstock, Robert H.; Post, Stephen G.; and Whitehouse, Peter J., eds. 1992. Dementia and Aging: Ethics, Values, and Policy Choices. Baltimore, MD: Johns Hopkins University Press.

Brett, Allen S., and McCullough, Laurence B. 1986. "When Patients Request Specific Interventions: Defining the Limits of the Physician's Obligation." New England Journal of Medicine 315(21): 1347–1351.

Collopy, Bart. 1995. "Safety and Independence: Rethinking Some Basic Concepts in Long-Term Care." In Long-Term Care Decisions: Ethical and Conceptual Dimensions, ed. Laurence B. McCullough and Nancy L. Wilson. Baltimore, MD: Johns Hopkins University Press.

Collopy, Bart; Boyle, Philip; and Jennings, Bruce. 1991. "New Directions in Nursing Home Ethics." Hastings Center Report 2(2): 1–15.

Densen, Paul M. 1991. AHCPR Monograph: Tracing the Elderly Through the Health Care System: An Update. Rockville, MD:U.S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research.

Dunkle, Ruth E., and Wykle, May L. eds. 1988. Decision Making in Long-Term Care: Factors in Planning. New York: Springer.

Finucane, Thomas E.; Christmas, Colleen; and Travis, Kathy. 1999. "Tube Feeding in Patients with Advanced Dementia: A Review of the Evidence." Journal of the American Medical Association 282(14): 1365–1370.

Gamble, Elizabeth R.; McDonald, Penelope J.; and Lichstein, Peter R. 1991. "Knowledge, Attitudes, and Behavior of Elderly Persons Regarding Living Wills." Archives of Internal Medicine 151(2): 277–280.

High, Dallas M. 1992. "Research with Alzheimer's Disease Subjects: Informed Consent and Proxy Decision Making." Journal of the American Geriatrics Society 40(9): 950–957.

Hofland, Brian F. 1988. "Autonomy in Long Term Care: Background Issues and a Programmatic Response." Gerontologist, suppl. 28(June): 3–9.

Hofland, Brian F., ed. 1990. "Autonomy and Long-Term Care Practice" (Special issue). Generations 14 (suppl.): 1–96.

Jecker, Nancy S. 1995. "What Do Husbands and Wives Owe Each Other in Old Age?" In Long-Term Care Decisions: Ethical and Conceptual Dimensions, ed. Laurence B. McCullough and Nancy L. Wilson. Baltimore: Johns Hopkins University Press.

Jecker, Nancy S., ed. 1991. Aging and Ethics: Philosophical Problems in Gerontology. Clifton, NJ: Humana.

Kane, Rosalie A., and Caplan, Arthur L., eds. 1990. Everyday Ethics: Resolving Dilemmas in Nursing Home Life. New York: Springer.

Kane, Rosalie A., and Caplan, Arthur L., eds. 1993. Ethical Conflicts in the Management of Home Care: The Case Manager's Dilemma. New York: Springer.

Kane, Robert A., and Kane, Rosalie, eds. 1982. Values and Long-Term Care: Factors in Planning. Lexington, MA: Lexington.

Keay, T. J., and Schonwetter, R. S. 2000. "The Case for Hospice Care in Long-term Care Environments." Clinical Geriatric Medicine 16(2): 211–223.

Kemper, Peter, and Murtaugh, Christopher M. 1991. "Lifetime Use of Nursing Home Care." New England Journal of Medicine 324(9): 595–600.

Lidz, Charles W.; Fischer, Lynn; and Arnold, Robert M. 1992. The Erosion of Autonomy in Long-Term Care. New York: Oxford University Press.

Mahoney, Kevin J., and Wetle, Terrie. 1992. "Public-Private Partnerships: The Connecticut Model for Financing Long Term Care." Journal of the American Geriatrics Society 40(10): 1026–1030.

McCullough, Laurence B.; Wilson, Nancy L.; Rhymes, Jill A.; and Teasdale, Thomas A. 1995. "Managing the Conceptual and Ethical Dimensions of Long-Term Care Decision Making: A Preventive Ethics Approach." In Long-Term Care Decisions: Ethical and Conceptual Dimensions, ed. Laurence B. McCullough and Nancy L. Wilson. Baltimore, MD: Johns Hopkins University Press.

Menikoff, Jerry A.; Sachs, Greg A.; and Siegler, Mark. 1992. "Beyond Advance Directives—Health Care Surrogate Laws." New England Journal of Medicine 327(16): 1165–1169.

Mitchell, S. L., and Tetroe, J. M. 2000. "Survival after Percutaneous Endoscopic Gastrostomy Placement in Older Persons." Journals of Gerontology 55(12): 735–739.

Molloy, David W.; Clarnette, Roger M.; Braun, E. Ann; Eisemann, Martin R.; and Sneiderman, B. 1991. "Decision Making in the Incompetent Elderly: 'The Daughter from California Syndrome.'" Journal of the American Geriatrics Society 39(4): 396–399.

Moody, Harry R. 1992. Ethics in an Aging Society. Baltimore, MD: Johns Hopkins University Press.

Ouslander, Joseph G.; Osterweil, Dan; and Morley, John. 1991. Medical Care in the Nursing Home. New York: McGraw-Hill.

Rudberg, Mark A.; Egleston, B. L.; Grant, M. D.; and Brody, J. A. 2000. "Effectiveness of Feeding Tubes in Nursing Home Residents with Swallowing Disorders." Journal of Parenteral and Enteral Nutrition 24(2): 97–102.

Sachs, Greg A., and Cassel, Christine K. 1990. "Biomedical Research Involving Older Human Subjects." Law, Medicine, and Health Care 18(3): 234–243.

Volicer, Ladislav; Cantor, Michael D.; Derse, Arthur R.; et al., National Ethics Committee of the Veterans Health Administration. 2002. "Advance Care Planning by Proxy for Residents of Long-Term Care Facilities Who Lack Decision-Making Capacity." Journal of American Geriatric Society 50: 761–767.

Volicer, Ladislav; Rheaume, Yvette; Brown, June; et al. 1986. "Hospice Approach to the Treatment of Patients with Advanced Dementia of the Alzheimer Type." Journal of the American Medical Association 256(16): 2210–2213.

Long-Term Care: II. Nursing Homes

views updated