The Emerging Ethics Agenda in Long Term Care of the Elderly.

by Father Bart J. Collopy
Humanities Division: Fordham University at Lincoln Center, New York (Summary of presentation made to the Centre for Applied Health Research at the University of Waterloo, January 26, 1994)

After a long period in which it focused almost exclusively on issues of acute care and medical research, biomedical ethics has recently begun to look more closely at long term care. The result is an emerging "ethics agenda" that draws attention to a number of critical areas in care of the elderly.

Life-sustaining Treatment

The most dramatic ethical issue in long term care involves life- sustaining medical treatment (the use of life-extending procedures such as feeding tubes, respirators, etc.). Decisions about such treatment are especially problematic when the wishes of the elderly have not been elicited or when these wishes are not respected by others. But even when care providers want to follow the wishes of an elderly person, they often find that they do not know what the person, now incapacitated, would have wanted under the circumstances at hand.

One of the major tasks in long term care is to clarify the rights of the elderly to make decisions about their own end-of-life care, to have access to legally and morally suasive means to insure that others will respect their wishes.

Not surprisingly, the need for education about advance directives (e.g., living wills, health care proxies) has become a major focus in the ethics agenda. Encouraging the use and recognition of advance directives requires education not only of the elderly and their families but of care providers as well.

The overall goal here is to help the elderly make informed decisions, plan for the future, and generally communicate with their caregivers in ways that will protect them from paternalistic (even if well-intentioned) interventions.

Equally important is the need to create moral guidelines and other resources for families and care providers as they work through their struggles with end-of-life decisions involving their elderly relatives and patients.

Other Treatment Decisions

In long term care questions about medical treatment are by no means limited to terminal care and life-sustaining treatment.

A host of other decisions are much more common and persistent (e.g., decisions about hospitalization vs. treatment at home or in a nursing facility, decisions about chemotherapy or dialysis, about diagnostic tests, psychiatric care or psychotropic medication, speech or physical therapy, dental care, even routine medication or dietary restrictions).

Decisions of this sort also raise difficult questions about the autonomy of the elderly, their right to refuse or be selective about proffered care, their freedom to take risks, to make decisions contrary to the advice or wishes of family members and care providers. These questions are complicated by the often conflicting demands of family obligation and professional beneficence.

"Problematic" Behaviour

In nursing homes and home care settings conflicts frequently develop when elderly residents or clients act in ways that work against the expectations and goals of care providers or family members.

Such "problematic" behaviour can, of course, cover a wide gamut of possibilities: taking physical or financial risks, living in unsanitary or unsafe conditions, being disruptive, uncooperative, non-compliant -- in short, being troublesome or worrisome in a wide variety of ways.

Once an elderly person's behaviour is identified as "problematic", care providers are liable to face decisions about intervening to protect that person, to restrain or otherwise manage the individual's behaviour.

But such behaviour management raises elemental questions -- about the self-determination of the elderly, the "value dissonance" and goal differences that can create misunderstanding between the elderly and their care providers, the imbalance of power on the side of care providers, the potential use of "problematic behaviour" as a label to justify control of the elderly.

One of the major tasks of long term care ethics is to create sensitivity to these issues, to check overly facile recourse to behaviour management on the part of care providers.

Autonomy in Daily Life

Behaviour management is not only a problem when behaviour becomes unsafe, disruptive, or non-compliant. Caregiving practices can, in fact, invade the everyday autonomy of even the most cooperative elderly.

Being cared for can mean losing control over such things as the scheduling of care, choice of food, basic privacies, freedom of movement, personal care, living space decisions about roommates and tablemates in an institutional setting, about patterns of leisure and social contact and access to the outside world in any setting.

Concern about these issues stresses the ethical importance of life's minute and mundane choices. It recognizes that loss of control over daily life patterns and surroundings can have devastating cumulative effect on the quality of an elderly person's life.

Decisional Capacity

It is a primary ethical principle in long term care that cognitive loss brings loss of autonomy and dependence on the decisions and interventions of others.

But assessments of cognitive loss, of "incapacity" or "incompetency", can be skewed by stereotypes, by negative expectations about the mental capacity of the elderly, by tendencies to equate non-compliance or eccentricity with incompetency.

Additional ethical problems arise when transient or specific incapacities are not distinguished from permanent and global incapacity, when preliminary screening tests (e.g., the mini mental status test) are used as substitutes for thorough clinical diagnosis. Thus, such terms as "dementia" or "Alzheimer's" may function as facile diagnostic labels.

The ethical risk here is enormous. Assessments of incapacity usually mean that individuals are denied some level of moral agency, some form of normal adult freedom. One of the major concerns of the emerging ethics discussion is to develop appropriate cautions and consistency of practice in the area of mental capacity assessments.

Wider Ethical Dimensions of Care

The emerging ethical agenda also includes foundational questions about the larger social function of long term care.

Here, the ethical discussion suggests that long term care is the embodiment of a society's attitude toward advanced age, its understanding of caregiving, of intergenerational burden, of private and public responsibility for the frail elderly.

From this perspective, long term care has an epistemic social mission. It helps a society, especially a "graying" society, understand what it means to grow old and frail, to be dependent, to struggle with issues of identity, integrity, and mortality in the last years of the life cycle.

Even the most cursory listing of these issues indicates the profoundly moral dimensions of long term care.