Book Review: Ethical Foundations of Palliative Care for Alzheimer Disease

During recent years the palliative care movement has rapidly extended its domain. Originated in the field of pain management for patients with terminal metastatic cancer, the model of palliative care has now also found application in the care for patients suffering from chronic diseases. To that end a new term was coined: that of non-cancer palliative care . In this book, a collection of contributions to a working conference in the Netherlands, a group of (Roman Catholic) physicians, moral philosophers, and nursing professionals explores the challenges of applying a palliative care policy to the field of care-giving in dementia. The starting point of their reflections is the observation that the traditional conception of bioethics, with its dominant orientation on autonomy and self-determination, is not easily compatible with the practice of caring for people with dementia. According to the authors, this situation can be remedied by appealing to the values of hospice philosophy and palliative care. The book is composed of six parts. A first one on the epidemiological, clinical, and societal aspects of the disease, which includes an interesting chapter on the relation between neuropathology and behavior in connection to issues such as competence and level of (in) dependence on care, is followed by an overview of palliative care as it is administered in Europe and the United States, with a fine chapter by Olde Rikkert (The Netherlands) and Rigaud (France) on hospital-based palliative care. Part three seeks to explore the philosophical and theological concerns central to Alzheimer disease, such as the questions of dignity, autonomy, and embodiment. In part four the more familiar clinical ethics issues are addressed, such as the dilemmas and pitfalls of decision making with regard to incompetent patients, end-of-life care for Alzheimer disease patients, the role of living wills, and the question of euthanasia. Part five deals with organizational ethics and allocation decisions whereas the final part explores the moral aspects of conducting scientific research in peoplewith dementia. One of the core chapters in this compilation is Ten Have’s contribution on the expanding scope of palliative care. Following Pellegrino, he differentiates between a philosophy in and a philosophy of palliative care. The former refers to the assistance ethicists can give to care givers in elucidating specific problems and in helping them to deal with moral dilemmas. The latter refers to the enrichment that the concepts and values of palliative care can provide to (a critical reflection on) bioethics. In this respect the author calls attention to the tendencywithin contemporary bioethics to neglect the human body: in its striving to secure the autonomy of the patient against medical paternalism, bioethics falls victim to the same dualistic anthropology that characterizes medicine. Palliative care and the hospice movement reject this dualism and focus on the essential embodiment of the human subject. Just like the ethic of care, inaugurated by feminist scholars, they call attention to vulnerability, dependency, and fragility as essential aspects of human existence that do not fit in very well with the dominant image of humans as autonomous and self-sufficient individuals. The lesson of palliative care is that the concern to foster and sustain authenticity (for instance by making decisions in accordance with a demented person’s values and life story) is of much greater moral relevance than the concern to respect autonomy. In addition, being vulnerable and dependent is characteristic of all human beings and links them together in a community: the cloak of palliative care symbolizes this essential relatedness to others. Authenticity and being situated in a community are thus the central values of palliative care. This calls for another image of human life than the one of traditional bioethics. This image is found by Ten Have in the Christian image of human life as pilgrimage: life as journeying, directed toward attaining a destination that makes awhole out of life and gives meaning to it. Unfortunately, whereas the reader is anxious to learn how these lessons and values of palliative care are implemented in the practice of care-giving in dementia, not all the chapters that follow succeed to substantiate the expectations raised by the title. The contributors to part three only superficially touch upon the specific moral questions and dilemmas of caring for Alzheimer disease victims, with the exception of Dekkers, who seeks to apply Merleau Ponty’s conception of the lived body to the moral question of how to interpret the severely demented patient’s tendency to pull out naso-gastric tubes. The same holds for some of the contributions to part four. Here of course the reader would like to know how the values of palliative care contribute to finding new ways of dealing with old decisional dilemmas, such as the problems related to living wills and personal identity, but these are treated in a rather abstract and detached way. Kissell calls upon communitarian philosophy to argue against the central position of advance directive procedures in contemporary rights-based ethics. To her opinion, seeing the patient as embedded in relations makes irrelevant whether the incompetent person of today is the same as the former competent person who drew up the living will. However, although one can agree with her criticism of the anthropological assumptions of rights-basedmedical ethics, in practice the loss of identity is often exactly what family members experience when their dear one—in his/her dementia—expresses wishes and preferences that run counter to his/her formerly held values. In the chapter on decision-making Welie goes on to state that living wills (and substituted judgments) violate the dignity of the Alzheimer patient. As an alternative he advises a best-interest approach to decision-making: the living will is only of relevance to the extent that it appears relevant to the patient’s new condition and present needs; if not, a best-interest judgment is preferable. The observation that advance directives have only limited value in the context of the long and gradual decline associated with dementia has already been made by many ethicists and is not new in this book. Yet, as far as palliative care focuses on the relation (ie, on the patient and his loved ones as the unit of care), the reader would have expected a more in-depth reflection on