Dallas M. High

Individualizing Care: FAMILY ROLES IN NURSING HOME DECISION-MAKING

l. Family members remain fully involved in nursing home decision-making after their relative has been admitted to a facility. 2. Family involvement in nursing home decision-making serves to individualize care and provide a continuing link to the residents personal history and preferences. 3. Family members assume an array of decision-making roles in nursing homes, including: caregiving, pampering, comforting, engaging, educating, monitoring, mediating, colluding and controlling.

Nursing home residents, families, and decision making: Toward an understanding of progressive surrogacy

Abstract This article examines surrogate decision making for nursing home residents and offers a description of progressive surrogacy based on a three-year in-depth study of residents 75 years and older in four nursing homes. The authors describe and provide case study examples of progressive decline in health and cognitive ability among nursing home residents and discuss the parallel progressive loss of decision-making capacities. Evidence is presented that the need for surrogate decision making covers a full range of decisions affecting the daily lives of residents and their quality of life and not just quality of treatment and health care. Findings from the study suggest that families are highly involved in providing decision making assistance to their relatives or substitute decision making for those who cannot participate in decisions. Families are not abandoning relatives to the decision-making authority of nursing homes.

Planning for Decisional Incapacity: A Neglected Area in Ethics and Aging

Practitioners and elderly patients share a common interest in advance planning for future health care decision‐making in the event of decisional incapacity. It is argued that advance directives can: 1) assist the elderly person in maximizing self‐determination; and 2) help physicians in caring for the elderly and their families by removing conflict potential. Furthermore, the author compares the legal and medical understandings of patient self‐determination and the uses of best interest and substituted judgment standards. It is argued that medicine and law differ on the important issues only in degree of emphasis, not in principle. To clarify the issues, a systematic classification of the multiple levels of instruction directives and agent‐proxy decision‐making models is developed. Finally, it is recommended that health care decision‐making for the elderly can be enhanced by encouraging patients to: 1) create as much evidence as possible to affirm their preferences and values; and 2) plan the delegation of decisions by appointing a proxy.

Surrogate decision-making: The elderly's familial expectations

This essay explores the preferences, anticipations and expectations of the elderly regarding the role of family members in making health care decisions for them should they become decisionally incapacitated. Findings are presented from a series of in-depth interviews of men and women aged 67–91 years. Following a discussion of the uncertain legal status of familial surrogate decision-making, we argue that the family units autonomy is sufficient to justify the elderlys preferred reliance on their own family. Further, we suggest that social and legal policy changes should facilitate, rather than impede, familial decision-making.

Community Integration of a Rural Nursing Home

Based on an ethnographic case study of Mountain View, a rural nursing home, the stereotype of the nursing home as an environment separated from its community context is challenged. Participant observation and repeated in-depth semistructured interviews with residents, family members, and staff, over a period of two years, and interviews with community officials reveal that the nursing home is historically, economically, socially, and psychologically integrated within the local setting. A high level of community integration is manifest in the permeability of the walls of the facility. Many residents are able to retain strong ties within the community through trips outside the facility and as a result of community involvement in activities at the nursing home. Most important, the community integration of Mountain View allows residents to maintain a temporal continuity in their lives. High levels of community integration may enable nursing homes to play an expanded role in the rural long-term care continuum.

Who will make health care decisions for me when I can't?

Medical professionals are increasingly faced with ethical dilemmas of caring for older patients who are decisionally incapacitated. Most often they rely on family to serve as surrogate decision makers. Does that practice agree with the preferences of the elderly themselves? Examined are the exploratory and qualitative findings of a sample of men and women, age 65 to 91 (N = 71). Comparisons are made between those elderly who have families and those who do not have families regarding the use of and interest in advance directives and proxy appointments. The findings suggest that elderly persons with families prefer to rely on relatives to conduct substitute decision making informally, unencumbered by legally executed living wills or proxy documents. Those without families view friends and doctors as their surrogate resource and endorse the use of legal proxy appointments. Implications for the use of advance directives and further public policy are discussed.

Advancing research with Alzheimer disease subjects: investigators' perceptions and ethical issues.

Advancement of Alzheimer disease (AD) research will not only depend on increased participation of patients with AD as subjects, but researchers will likely face increasingly difficult ethical issues. Presented are the results of a survey of researchers at the 15 federally funded Alzheimer Disease Research Centers concerning the ethical issues for subjects with AD participating in research. Experiences from 99 projects are assessed. Major findings include a significant lack of uniformity on the assessment of competency of subjects to consent to research, proxy informed consent overwhelmingly provided informally by family members, no wide use of durable powers of attorney and guardians, perception by the investigators that most projects present only minimal risks to the subjects, and Institutional Review Boards not being viewed by the investigators as preventing or inhibiting the advancement of AD research. It is recommended that research is needed to develop greater clarity in assessment of capacity of subjects to provide informed consent, that ethical and legal empowerment of family members to provide proxy consent be sustained, and that the issue of risk/benefit ratios for AD participants in research be reevaluated in the light of potentially greater risks to subjects.

Old and alone: Surrogate health care decision-making for the elderly without families

Abstract Investigated were elderly persons who live alone and do not have families to rely on for surrogate health care decision-making in events of decisional incapacity. Exploratory findings are presented from in-depth interviews of 20 men and women aged 65 to 91. Friends and physicians are the preferred surrogate resources for elderly people without families. Some participants, however, reported that they had no one to rely on. The findings revealed that elderly people without families have not engaged in much planning for long-term care and related health care decision-making. Instead, these people hope to continue as they have to make their own decisions and to care for themselves until the end of their lives. The study recommends that professionals should initiate discussions with family-less elderly concerning the use of planning measures, including utilization of proxy appointments, for future health care decisions.