Ethical Issues And The Caregiver

September 27, 2008

The family and the health care professional involved in the care of the person with Alzheimer’s disease encounter many daily situations in which they must make ethical decisions. These decisions frequently are difficult and may often involve genuine ethical dilemmas. Discussion of the issues can remove some of the perplexity and at the same time illustrate the underlying values, together with practical courses of action that are most appropriate in the care of a person with Alzheimer’s disease.Respect for the person’s right to self-determination is the best guarantor of maintaining personal dignity in the early stages of Alzheimer’s disease. The ability and the right of such a person to participate in decisions pertaining to present and future care have been presented in the previous section. The willingness of family and health care professionals to guarantee such a right, while assessing and evaluating the person’s declining cognitive abilities as the disease progresses, is a difficult task. The advent of incompetence, realizing that a precise definition of such a state does not exist, raises many ethical questions for the caregivers.

The ethical wisdom derived from ongoing discussion about the values and principles that should direct the care of the seriously ill in competent person is difficult to apply in practice to caregiving situations. Much of the legal and ethical discussion, which often centers on the extreme and ambiguous cases of controversial medical decision making, has an academic flavor that seems incongruent with the human anguish that occurs as a result of such difficult decisions. A humane understanding of the issues necessarily includes an analysis of the ethical and legal principles involved; but it must also include descriptions of how these principles are translated into humane care. George Bateson writes that in the attainment of grace, the reasons of the heart must be integrated with the reason of the reason. A purely rational, intellectual, and ethical approach to the needs of the person with Alzheimer’s disease will not work of itself; neither will a purely emotional approach.

The attitudes of caregivers toward caring for persons with advanced dementing disease are determined in part by the caregivers’ views of the personhood of the demented individual. For many caregivers, caring for the body of the Alzheimer patient often stands as a metaphor for taking care of the mind and the spirit of the whole person. For these individuals an essential value is acknowledged by providing even the most basic care for victims of this disease. Another approach that might be espoused by caregivers would emphasize the loss of personhood, identity, and self­reflection by the person with Alzheimer’s disease. Advocates of this position argue that to recognize the diminished personhood of the patient reduces guilt and frustration in the family and in caregivers, which ultimately results in reduced stress and, paradoxically, produces more effective care. Viewing victims of Alzheimer’s disease as less than persons, however, can quickly lead to their total devaluation as nonpersons. The status of nonperson is perilous because such a being does not enjoy the privileges and rights of human beings and, as such, is easily discounted.

The value system of the caregiver serves as the ultimate basis for the care provided to the Alzheimer patient. The ethical perspectives of caregivers determine in real life their reactions to routine and emergency situations. The manner in which a caregiver defines a “problem” will determine the clinical interventions. A person’s beliefs about the patient, the disease, and dying will often decide the treatment or procedure that is instituted. The desirability of tube feeding as opposed to the trouble of more normal feeding is strongly influenced by the value system of the caregiver and of the institution. The dignity of the dying person is best assured by caregivers who know how to comfort such patients. This calls for skill, compassion, honesty, and humility. The practical application of compassion is a powerful determinant of the quality of care enjoyed by those patients experiencing the later stages of the disease and, ultimately, in their final act of dying.

Compassion and mercy in caregivers are the qualities that are best suited to meeting the needs of demented persons in all phases of their disease. Little has been written about the practical application of such qualities to the care of the seriously ill. Scant attention is paid to these concepts in the training of health care professionals. The overwhelming emphasis in professional schools is on the technical aspects of patient care. Caring for the demented person in the late and final stages of illness is a high human and professional calling that fully challenges the art and science of the caregiver. Mind and heart are wedded in the care of critically ill demented persons whose most basic human satisfaction may be derived from such basic activities as sucking on a thumb. The sounds, the touch, the smells, the food, the drink, the sensory stimulation that com­fort or give pleasure to the severely demented are the human components that constitute the practice of mercy and compassion in the care of per­sons undergoing the late and final stages of Alzheimer’s disease. The human qualities that enable caregivers to deliver such care merit serious attention. People who are comfortable with the unusual, who have basic physical, emotional, and spiritual resilience together with warmth and a sense of humor, may be best suited for the challenging role of caregiver. Those who provide care create the human environment in which concern, fairness, compassion, and mercy translate into effective, humane care for persons in the later and final stages of Alzheimer’s disease.

The development of a Code of Ethics to guide families and caregivers in the application of ethical principles to the care of persons in advanced stages of the disease would be helpful. Policies and guidelines covering many issues of care could be drawn from such a code. Ethics committees would also be a welcome addition because of their ability to provide education, consultation, and case review in difficult decision-making situations. Some have expressed concern about the quality of the decision making that occurs in nursing homes, which are sometimes described as a very troubled and troublesome component of the health care system. The absence of input from physicians and other skilled health care professionals, because of the limited role they play in such institutions, is noted in this respect.

An ethical code, directed toward the specific needs of persons with cancer, has been adopted by M. D. Anderson Hospital in Houston, Texas. The code is intended to give impetus and direction when thinking about moral problems, but it does not attempt to solve them. An impressive statement of institutional concern for the dignity of persons with cancer is found in the use of the term reverence for the patient as the essential determinant of the institution’s approach. A model code, which would provide similar direction for institutions involved in the care of persons with Alzheimer’s disease and for research in the field, could be developed by the Alzheimer’s Disease and Related Disorders Association or some other interested group. The moral values of families and caregivers, which under gird the care given to persons with this disease, need to be incorporated into a code that could benefit all who are touched by Alzheimer’s disease.

The Alzheimer’s Association has developed commendable guidelines which address the needs of persons with Alzheimer’s in long­term care facilities. These guidelines call for the creation of “compassionate life-enriching programs and environments.” Likewise, the Ethics Committee of the Alzheimer’s Association is developing a code of ethics which addresses issues of human dignity in caring for persons with Alzheimer’s.

Reflection on the values that surround the care of a person with Alzheimer’s disease can be a rewarding experience for families and care­givers: it highlights their heroic efforts to maintain the dignity of the patients in their care. Discussion of humane care in the later and final stages of the disease helps concerned caregivers identify the essential human elements of such care. Ethical reflection also safeguards the rights of seriously demented persons whose welfare is totally determined by others. As we engage in the pain and suffering of the individuals with the disease, and their families, and seek to care for them in their need, we discover within ourselves depths of concern, compassion, and mercy that remind us of our essential human value.

Posted in Alzhemier Disease