DEMENTIA: ETHICAL ISSUES

There has been much progress in the ethics of dementia care. Dementia is a syndrome (i.e., a cluster of symptoms) that can be caused by a myriad of diseases. The most common disease cause of irreversible, progressive dementia is Alzheimer's disease, which this article will frequently allude to.

Moral progress is evident in the fact that the use of physical restraints is diminishing in nursing homes. By the mid-1990s, ample evidence had accumulated that "minimal restraint" or "no restraint" policies actually keep persons with dementia safest, for otherwise they can choke to death on strapped chairs, or fail to thrive as a direct result of physical coercion. Increasingly, architects have focused on how to design long-term care facilities that maximize the freedom to wander while minimizing environmental obstacles or hazards. Similarly, psychiatrists have become more adept at setting clear therapeutic goals for behavioral medications, monitoring for outcome, and using the smallest doses necessary. This avoids the problem of polypharmacy (prescription of large numbers of drugs, many of which are unnecessary and cause harm), which can further harm cognition in people with dementia who have problems with agitation, paranoia, hallucination, and the like. Increasing attention is being given to the fact that people with dementia can experience physical pain, especially in the end stage, and may require pain-relieving medications (palliative care). Professionals and family members are realizing that in the advanced stage of this disease, assisted oral feeding ensures a better quality of life than artificial nutrition and hydration (Post, 2000).

Dementia and moral standing

Persons with cognitive deficits such as those brought about by dementia eventually will no longer be intellectually or economically productive. The term "hypercognitivist" was coined in 1995 by Stephen Post to describe a value system that focuses on rational decisional capacity as the marker for moral standing under the protective umbrella of the principle of nonmaleficence (i.e., "do no harm"). In the absence of the ability to make plans and implement them, the person with dementia becomes a "nonperson," who, even if still treated with a degree of care, has a diminished moral standing. In contrast, focus group studies show that most family and professional caregivers hold a diametrically opposite view: they see the person with dementia in terms of remaining capacities, and in terms of emotional and relational well-being despite cognitive losses (Post and Whitehouse, 1995). The philosopher Alasdair MacIntyre (1999) points out that contrary to dominant schools of ethics, the classical Western tradition of moral thought refuses to devalue the cognitively imperiled.

In the wider culture, the criteria of rationality and productivity may blind many to other ways of thinking about the meaning of one's humanity and the nature of humane care in the context of dementia. Many people simply cannot handle being around someone who is mentally and emotionally disabled. People with the diagnosis of dementia often complain of a sense of social diminution, of a negative social psychology in which they no longer get the respect that they once enjoyed. They typically ask to be more included in conversations, decisions, and activities. A fuller attention to emotional and relational well-being may in some cases offset some of the adverse behavioral impact of neurological impairment. Any tendency to treat someone with dementia as though he or she counts less than, or has a different status than, other human beings should be discouraged (Kitwood, 1997).

Truth telling

There is a consensus among medical ethicists that patients should be told the truth about a diagnosis of Alzheimer's disease or any other dementing illness. This is also their legal right. By the late 1990s, especially with the advent of new treatments for the cognitive symptoms of Alzheimer's disease, and with more accurate diagnosis, nearly all clinicians informed patients of their diagnosis. The discovery of inheritance patterns, emerging treatments, and the general public awareness of Alzheimer's disease contributed to a noticeable swing toward diagnostic truth telling.

The question now is not whether to tell the truth, but how to tell it in a sensitive and supportive manner that does not create unnecessary despair and that, as far as possible, maintains hope. Professionals should assure patients that there are many ways to ensure good care and the treatment of the symptoms of dementia throughout its progression (Zarit and Downs, 1999).

Truth telling allows the person with the diagnosis to plan for optimal life experiences in remaining years of intact capacities, prepare a durable power of attorney for health care decisions—some may also prepare a living will —to be implemented upon eventual incompetence, and participate actively in Alzheimer's disease support groups, to which referrals should always be made.

Autonomy

Patient autonomy (i.e., self-determination) cannot exist without truth. Autonomy can be extended through advance directives (i.e., living wills and durable power of attorney for health care), and few question the importance of such documents. The durable power of attorney for health care allows the person, while still competent, to designate a trusted individual (usually a family member with whom he or she has had ample conversation) who will make medical treatment decisions once the person becomes unable to do so. This allows the surrogate decision maker to be attentive to the person's values and wishes, and to make decisions as needed. A living will, coupled with the durable power of attorney for health care, is usually recommended by lawyers. In the absence of legal documentation, all states allow the surrogate decision maker to proceed de facto, based on the sate statutes, although some states may try to interfere with surrogate control in designated areas, such as the refusal of a feeding tube.

The still competent self may not know what the experience of moderate dementia is like, nor be privy to the forms of well-being to be facilitated for such a self, but he or she surely knows the meaning of incontinence of bowel or bladder, repeated majors infections, and severe dysfunction. The best mechanism for empowering the intact self is the implementation of a durable power of attorney for health care, which is, paradoxically, the act of relinquishing control by placing oneself in the loving hands of another, with certain broad parameters spelled out as desired.

New medications

Medical science is likely to develop treatments for Alzheimer's disease and other causes of dementia that slow the progression of the disease. Patients, while competent, and surrogates will need to reflect carefully on the ethics of altering the course of progressive dementia. It is difficult to imagine that any reasonable person would want his or her disease progression slowed in the advanced stage, which is replete with severe dysfunction. Most, it can be assumed, would prefer a comfortable death in a hospice-like setting of palliative care. A drug to slow progression would, however, be most welcome prior to onset of symptoms, or in the mild and even moderate stages, in order to avoid the indignities of advanced dementia (Post, 2000). The ethical maxim is this: prevent or delay onset of symptoms, mitigate symptoms insofar as possible, but never purposefully prolong life in the advance stage of severe dysfunction.

As for the cognitive enhancing drugs, which do not slow the progression of dementia but mitigate some symptoms for limited periods of time, the absence of clear data on outcomes necessitates caution when addressing the ethical implications. Some major ethical quandaries are, however, identifiable. The introduction of acetylcholinesterase inhibitors for treatment of mild to moderate Alzheimer's disease is, on the one hand, promising. There is anecdotal evidence of its effectiveness: a mildly demented woman insisted that, with the help of donepezil, she can now find her words; a woman who was too forgetful to cook anymore regained sufficient memory to begin cooking again in relative safety. But patients and caregivers who have already navigated certain crises of cognitive decline may have to repeat the process. The individual who has lost insight into his or her losses may regain insight, along with renewed anxiety. New cognitive enhancing compounds should not be prescribed without attention to individual cases. Each patient's response must be carefully monitored with regard to quality of life. Every caregiver should know that the use of these compounds is a deeply personal and value-laden decision requiring the careful exercise of compassion and good judgment. There is nothing wrong with withdrawing an antidementia treatment that does not seem to have a positive result. Modest improvement or temporary stabilization of cognitive decline will be viewed by some caregivers as gratifying—but certainly not by all.

A natural dying

In general terms, no caregiver should feel that the technological extension of the life of a loved one with advanced Alzheimer's disease is necessary. One clear marker of the severe stage is the loss of the capacity to swallow. Artificial nutrition and hydration are generally not a solution because such intrusion is almost invariably unwelcome to the patient. Physical discomfort and complications are equally serious considerations. No wonder the person with Alzheimer's repeatedly pulls out feeding tubes. The Alzheimer's Association guidelines for the treatment of patients with severe dementia are clear: "Severely and irreversibly demented patients need only care given to make them comfortable. If such a patient is unable to receive food and water by mouth, it is ethically permissible to choose to withhold nutrition and hydration artificially administered by vein or gastric tube. Spoon feeding should be continued if needed for comfort" (1994).

In case consultations, caregivers who have already rejected the use of a feeding tube ask how aggressively to encourage eating and drinking by mouth in patients who are losing these capacities. As long as a person retains the capacity, food and water should be offered, and the taking of them encouraged by spoon feeding. A baby bottle can be helpful because the sucking reflex is often retained. But when the person no longer is able to swallow, it is of no benefit to fill the mouth with food and water.

After the capacity for natural eating and drinking has been lost, it should be firmly understood that a decision against artificial nutrition must also be a decision against artificial hydration (a fluid IV). Families need to be informed that their loved one will likely die within one or two weeks, and that dehydration is known to have sedating effects that ensure a more peaceful dying.

The clinician should proactively clarify for caregivers the burdens of invasive treatments in order to spare them the sense of guilt associated with not doing everything to prolong life. Chaplains should advise caregivers that their love is better expressed through compassion, commitment, and humble entry into the culture of dementia.

The right to well-being

It is morally imperative to build on the remaining capacities of persons with dementia. The well-being available to people with dementia is obvious to anyone who has watched art or music therapy sessions. In some cases, a person with advanced Alzheimer's disease may still draw a valued symbol, as though through art a sense of self is retained. The abstract expressionist painter Willem de Kooning painted his way through much of his struggle with Alzheimer's disease. Some critics commented that his work, though not what it had been, was nevertheless impressive. Kay Larson, former art critic for New York magazine wrote, "It would be cruel to suggest that de Kooning needed his disease to free himself. Nonetheless, the erosions of Alzheimer's could not eliminate the effects of a lifetime of discipline and love of craft. When infirmity struck, the artist was prepared. If he didn't know what he was doing, maybe it didn't matter—to him. He knew what he loved best, and it sustained him" (Larson, p. 298). DeKooning, like all persons with dementia, retained some strengths and abilities that he was able to capitalize on. It is important to look at what the person with dementia can do, rather than at what he or she cannot do.

In addition to self-expression through the arts, many persons with dementia enjoy the smell and look of fall leaves, or the sounds of birds singing, and they can appreciate the "wonder of it all" through such small gratifications. The losses associated with dementia must be placed within the context of losses associated with aging in general. As horizons of experience narrow, small pleasures in life become more and more important. In dementia care, pleasures and gratifications that are small loom especially large. Many of the better assisted living facilities are single-story campuses with access to rubberized pathways in garden areas surrounded by attractive fencing to prevent wandering off.

Justice for persons with dementia

While we can all agree that services for persons with dementia should be better and more plentiful, who should pay for them, and are there limits? The American health care system is oriented to pay for "rescue" medicine that pulls persons in any condition from the jaws of death, but it provides very little to support the expense of chronic and long-term care.

It is easy to reject the notion of categorical age-based rationing of life-extending health care associated with Daniel Callahan (1987), for age alone is never a fair basis for allocating lifesaving. Elderly persons are remarkably heterogeneous, and age is a notoriously poor indicator of outcome in almost all medical circumstances (Binstock and Post, 1991). Yet Callahan succeeded in forcing the question and spurring a moment of debate among intellectuals. On his side of the argument is the reality that overtreatment of older adults is rampant in American medicine, and a source of wide public concern. If the autonomy model cannot solve the problem of overtreatment, then perhaps rationing must. It might be possible for society, by some means of consensus, to arrive at the notion of categorically limiting purposeful efforts to extend the lives of persons in the advanced stage of Alzheimer's disease. This would not be based on age, however, but on the gravity of the condition and its discomforts and burdens to the patient. It would be altogether fitting for policymakers, in dialogue with informed constituencies and through democratic action, to determine that while hospice-oriented long-term care will be paid for with public funds, efforts to rescue a person in advanced and terminal dementia would not be, nor would the protracted expense of long-term care that results from such rescue. In essence, if there were a practical trade-off possible within the health care system, emphasis should be placed on everything but technological rescue efforts for persons beyond the moderate stage of Alzheimer's disease and for whom quality of life, but not quantity of life, should be enhanced.

American society is still not quite at the point of consensus. Yet in the future, policies may be constructed on a majority basis that would in fact limit rescue efforts, at least with respect to dialysis, mechanical ventilators, and cardiopulmonary resuscitation. Perhaps artificial nutrition and hydration in the terminal stage could also be deleted from public funding once the society realizes the burdens this creates (Gillick, 2000).

Stephen G. Post

See also Advance Directives for Health Care; Alzheimer's Disease; Autonomy; Competency; Dementia; Refusing and Withdrawing Medical Treatment.

BIBLIOGRAPHY

Alzheimer's Association Public Statement on Tube Feeding (press release). Chicago, 1994.

Binstock, R. H., and Post, S. G., eds. Too Old for Health Care? Controversies in Medicine, Law, Economics, and Ethics. Baltimore: Johns Hopkins University Press, 1991.

Callahan, D. Setting Limits: Medical Goals in an Aging Society. New York: Simon and Schuster, 1987.

Gillick, M. R. "Rethinking the Role of Tube Feeding in Patients with Advanced Dementia." New England Journal of Medicine 342 (2000): 206–210.

Kitwood, T. Dementia Reconsidered: The Person Comes First. Buckingham, U.K., and Philadelphia: Open University Press, 1997.

Klepper, H., and Rorty, M. "Personal Identity, Advance Directives, and Genetic Testing for Alzheimer Disease." Genetic Testing 3 (1999): 99–106.

Larson, K. "DeKooning and Alzheimer's." The World & I 12 (1997): 297–299.

MacIntrye, A. Dependent Rational Animals: Why Human Beings Need the Virtues. Chicago: Open Court Press, 1999.

Post, S. G. The Moral Challenge of Alzheimer Disease. Baltimore: Johns Hopkins University Press, 1995.

Post, S. G. The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying, 2d ed., rev. Baltimore: Johns Hopkins University Press, 2000.

Post, S. G., and Whitehouse, P. J. "Fairhill Guidelines on Ethics of the Care of People with Alzheimer's Disease: A Clinician's Summary." Journal of the American Geriatrics Society 43 (1995): 1423–1429.

Zarit, S. H., and Downs, M. G., eds. Generations: State of the Art for Practice in Dementia (a special issue of Generations ) 23, no. 3 (Fall 1999).