It is important that the dignity of persons in the early stages of Alzheimer’s disease be maintained by involving them in the decision making process that addresses their present and future welfare. As long as Alzheimer patients retain their decision making capabilities, they should be encouraged to make a great many personal decisions involving day-today living. In addition, provision can be made for the future when persons with Alzheimer’s will be unable to make rational decisions. The delicate task of determining present wishes concerning future health care, participation in research, the choice of a nursing home, and the manner of care as death approaches ideally needs to be addressed while the person retains competency. Many of the ethical dilemmas faced by families and caregivers regarding the care of persons in the later stages of the disease could have been anticipated if the patient’s wishes had been determined prior to the onset of in competency. If one waits for such discussions to take place after Alzheimer’s disease has been diagnosed, the patient may not be able to comprehend fully the questions at hand. Patients may be totally unaware of their cognitive decline. A lack of awareness makes decision making about unrecognized likelihoods quite problematic. It is perhaps more realistic for such concerns to be discussed prior to the onset of any catastrophic illness.The involvement of the person with Alzheimer’s in making decisions concerning future care is an undertaking that requires tact and sensitivity. Making provisions for the future should not deprive a person of the hope needed for day-to-day living. One must recognize the prevailing reluctance of our society to discuss the types of care or medical interventions we would desire in the final stages of our lives. A contemporary desire for a sudden and anticipated demise is often thwarted by modern medical technology, the advent of which forces us to analyze the essentials of a good death and to embrace the “ars moriendi” (art of dying) wisdom of earlier centuries. In other terminal illnesses, such as cancer, the competent person can make treatment choices throughout the progression of the disease.
Those with advanced Alzheimer’s disease lack the ability to give such directions. It seems appropriate that a mentally competent adult should determine the essentials of humane care in the later stages of the disease, including specific directions with respect to measures appropriate as death approaches. The desirability or undesirability of heroic measures can be determined by the competent person.
Specific directions about food and fluids often determine when and if artificial feeding is introduced. It would seem appropriate that basic natural satisfactions like eating and drinking should be maintained to the very end for the person with Alzheimer’s disease. Human dignity is best preserved through self-feeding or hand-feeding by another. The introduction of tube-feeding can sometimes be the ultimate indignity inflicted on demented persons who have no essential need for it. Understaffed institutions may introduce such procedures in the interest of cost effectiveness and because it is covered by insurance as a part of skilled nursing care. Thoughtful though painful reflection by Alzheimer patients and their caregivers on what constitutes humane care in the later stages of the disease may rescue many a victim from technical forms of care, and assure that compassion will be the primary concern.
Long-term care institutions play a critical role in the provision of humane care for many persons with advanced Alzheimer’s disease. Persons in the early stages of the disease are very often able to determine their own futures. Official power of attorney may provide legal assurances that their wishes will be respected. Family members may struggle to respect the wishes of their loved ones; nursing homes, however, determine if such provisions are realized. It is essential to involve competent persons in the selection of health care facilities that will guarantee humane surroundings, humane care, and respect for the patient’s expressed wishes. The presence of a Code of Ethics within the institution and the availability of policies and guidelines with respect to clinical decision making are important considerations in choosing an appropriate facility . Assurances that the final stages of one’s life will be spent in humane surroundings could add immeasurably to the quality of life enjoyed by a person in the early stages of the disease.
The involvement of Alzheimer patients in research activities has attracted most of the recent ethical discussion. The ability of persons in the early or middle stages of the disease to make informed decisions concerning their participation in research is upheld by many ethicists, gerontologists, and legal experts. The present ability of persons with the disease to acquire, retain, process, and act on research information that is appropriately communicated becomes central to the notion of informed consent. It would also seem appropriate that competent persons could consent to continuing in research situations during and after the onset of in competency. Guarantees should exist, however, that the actual research procedures would not violate individual dignity, expose the person to unnecessary risks, or greatly distress the patient. Institutional Review Boards for the Protection of Human Subjects (IRBs), or their equivalents in nursing home situations, should ensure that adequate protection is afforded persons involved in research and that adequate policies and guidelines spell out this responsibility. Research into the nature of the disease is important, and progress in caring for and treating persons with Alzheimer’s is intimately linked to research. Progress, however, is an optional goal and is not worth achieving if individual worth is the price that must be paid. Researchers have an awesome ethical responsibility in assuring that their attitudes reflect respect for the personhood of demented people.
The decision making carried out by persons in the earlier stages of the disease occurs in a familial setting. The decisions made by the persons with the disease are often shaped by the advice of family, friends, and health care professionals. The range of options available to Alzheimer victims is often defined by the ability and willingness of family members and health care professionals to discuss the options and to implement whatever is decided. Meaningful dialogue concerning present and future care is both challenging and rewarding for the patient and the caregiver during the early and middle stages of the disease. It calls for the exercise of ethics in its highest human form because it represents the application of the highest values to the care of human beings.
A caregiver has suggested that a meaningful religious ritual could mark the passage of a person from the semi competent stage to the demented stage, from the home to the nursing home. Such a ritual would express a belief in the dignity of the person, would give thanks for the blessings of the person’s life with special reference to the meaningful times enjoyed since the onset of the disease, and would contain a commitment to the care of the person in the new surroundings. The involvement of competent persons with family and caregivers in planning such life transition rituals could give meaning to an event that is often surrounded by guilt and other negative feelings. Perhaps such a ritual could focus attention on the duties and obligations most appropriate to the care of the persons in the later stages of the disease. In embracing the pain of such decision-making, we might learn the deeper meaning of our service.