Ethical Foundations of Palliative Care for Alzheimer Disease

NINE: The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example

mc h a  t e r n i n e The Practice of Palliative Care and the Theory of Medical Ethics Alzheimer Disease as an Example Rien Janssens, Ph.D. It is far from accidental that the origins of modern medical ethics and the origins of modern palliative care both can be traced to the end of the 1960s (Janssens & ten Have, 1999). Both movements came forth out of moral discomfort with a health care system that primarily focused on cure and life prolongation , sometimes employing disproportionate technological interventions. However, whereas the discomfort was the same, the responses to it were substantially different (Saunders, Summers, & Teller, 1981). The discomfort of the new discipline of medical ethics is related primarily to the paternalistic attitude of physicians (Katz, 1984). In the context of the technological possibilities of medicine, observers noted that under some circumstances the application of medical technology could be more harmful than beneficent to the patient’s well-being. It was judged that the decision to apply such interventions should no longer be made by physicians but by patients themselves. The power of the physician to administer medical treatment where and whenever possible should be handed over to the patient. Thus, the principle of autonomy became foundational for modern medical ethics, so that the maxim of the new medical ethics no longer was to preserve human life whenever possible. Instead, it became to preserve human life whenever meaningful (Zwart, 1995; Van den Berg, 1969). Modern medical ethics thus became applied ethics intended to help physicians and nurses solve moral dilemmas in practice occasioned by the above shift in perspective. For this understanding of ethics, it does not matter much whether it is applied to acute, curative settings or to settings where long-term care is provided. The hospice movement that stands at the basis of modern palliative care did not focus so much on the absence of the patient’s voice, but rather stressed the absence of care in medicine (Gracia, 2002). Unlike medicine, it acknowledged the importance of pain control and symptom control and of psychosocial and spiritual aspects of care. The first hospices shifted attention away from technological interventions intended to prolong life to attend to the needs and wishes of dying persons for whom a lot can still be done even when cure is no longer an option. This approach acknowledged death as a part of life, not as an event to be avoided or postponed at all costs. For some years now, the topic of palliative care has been of interest in many countries. The increasing attention given to palliative care has already done much good, inside as well as outside the formal health care system. But as this chapter indicates, the increasing attention to care practices such as palliative care not only requires a reorientation of medicine, it also requires a reorientation of medical ethics. The moral values of palliative care are to some extent different from the moral values of the curative medicine to which medical ethics directed its attention (Janssens, 2001). Caregivers in palliative care use a specific moral language that not only articulates knowledge and expertise but also stresses the importance of dispositions, attitudes, virtues, and feelings (Janssens et al.,2000). Many general ethical notions often carry a specific meaning in the context of palliative care, a meaning that asks for articulation and philosophical clarification. In other words, the material object of an ethics of palliative care is to an important extent specific, and different from the material object of medical ethics in general. This specificity is highlighted by the case of patients suffering from Alzheimer disease (AD), not only because they require long-term care but also because these patients challenge and put into question clear conceptions of competence , autonomy, and informed consent. This background sets the context for the three aims of this chapter. The first aim here is to indicate that the moral specificity of palliative care requires a specific kind of ethic. The second aim is to propose some perspectives for a practically relevant ethics of palliative care. Before stating the third aim, it is appropriate here to explain this second aim further. It draws on the assumption that Palliative Care and Medical Ethics Theory 147 the practical relevance of ethics does not primarily consist of applying norms and principles or problem solving, because ethicists...