Ethical Foundations of Palliative Care for Alzheimer Disease

FOUR: Expanding the Scope of Palliative Care

mc h a  t e r f o u r Expanding the Scope of Palliative Care Henk A.M.J. ten Have, M.D., Ph.D. The number of persons with Alzheimer disease will increase substantially over the forthcoming decades, as O’Brien illustrated in the first part of this book. A report of the Health Council of the Netherlands, for example, estimated that in the year 2000, one in every ninety-three people in the country had dementia. In 2050, the prevalence will be one in forty-four (Gezondheidsraad, 2002). Potential methods of prevention are not yet adequately explored. The report also concludes that genetic diagnosis is not worthwhile: a negative predictive test result will not imply that the person will remain free from AD, and a positive outcome does not mean that a person will develop the disease. Furthermore, it is stated that antidementia drugs so far are unsuccessful; one of the conclusions of the report is that in the foreseeable future it is unlikely that medication that is capable of controlling all of the symptoms of dementia will be discovered. Given the lack of preventive and curative approaches, as well as the increasing prevalence of the disease, an atmosphere of powerlessness and even desperation may arise. The personal, social, and economic burdens of AD may become overwhelming , as documented by O’Brien (chapter 1.) This makes patients, families, caregivers, and health care professionals vulnerable to the “therapeutic illusion ”—the unfounded belief that remedies are almost at hand and certainly available in the very near future. On the other hand, what are the options? With a growing number of persons requiring care, the only option indeed is to provide adequate care. In 2000, approximately 35 percent of dementia patients were in nursing homes or residential care facilities. In order to maintain a comparable level of professional care with the increasing prevalence of dementia, six new nursing homes per year should be established in the Netherlands (creating an annual 1,300 institutional places). This estimation, of course, presupposes that, at present, treatment, care, and support are adequate. In the report it is acknowledged that this is not the case. Therefore, if in the current situation providing care is the only feasible option , it is clear that an enormous effort will be required, not only as far as family and professional caregivers are concerned but even more on a social and cultural level, where better, as well as many more, care service arrangements should be created. However, what is rarely discussed is what type of care is most adequate for persons with AD. It is suggested that palliative care is the preferred type of care. Palliative care should be expanded so that it will include care for AD patients (George & Sykes, 1997; R. Janssens et al., 2002). It is no longer defensible to restrict palliative care to people with cancer; we should develop palliative care beyond cancer, and people with AD clearly are at the moment a disadvantaged group. The question, however, is how palliative care as it has evolved recently, with its particular conceptual, philosophical, and ethical framework, relates to care for people with AD. m The Development of Palliative Care During recent decades, the development of palliative care has been impressive . During the 1970s, the ideas of the hospice movement were disseminated. In Canada, Balfour Mount established in 1975 the first in-patient palliative care unit in Montreal’s Royal Victoria Hospital, introducing the new term palliative care. In the 1980s,the modern ideas of hospice and palliative care were gaining ground in various European countries (ten Have & Janssens, 2001; Jacquemin, 2001). For example, in 1987 the first palliative care unit in France was founded in the international hospital of the University of Paris. Years before, palliative home care services had begun in Sweden (in 1977) and Italy (1980). Germany, Spain, and Belgium initiated palliative care services in the first half of the 1980s. In the 62 European Voices on Palliative Care Models Netherlands, palliative care arrived rather late, with the establishment of the first hospice in 1991 and academic palliative care centers in 1999. The need for palliative care is similar in both developed and developing countries. Every country is confronted with demographic changes leading to an aging population. At the same time, the character of medical problems is changing, with an increasing burden of chronic illnesses in which the possibilities of cure are limited...