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FIVE: Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?
- Johns Hopkins University Press
- Chapter
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mc h a t e r f i v e Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It? Marcel G. M. Olde Rikkert, M.D., Ph.D. Anne-Sophie Rigaud, M.D., Ph.D. This chapter focuses on hospital-based palliative care in dementia . The symptoms of dementia are not of course limited to Alzheimer disease (AD), but almost all of what we offer applies well to the specific situation of AD. Palliative care in dementia may have to be redefined, starting from the general definition of palliative care given by the World Health Organization (WHO): integral , active, and multidimensional care for patients with incurable diseases, aimed at optimizing quality of life both for the patient and the family. As elaborated elsewhere in this book, the concept of palliative care comes primarily from medical oncology and has some major characteristics (Sipsma, 2001): • dying is regarded as an intrinsic part of life • acceleration or postponement of death is not an aim of palliative care • palliative care aims at lessening pain and other burdensome symptoms • palliative care is designed to help patients become as active and autonomous as possible • palliative care supports the family in coping with the disease of their loved one There is a controversy regarding the stages of chronic diseases to which palliative care should be restricted. A limited view on palliative care restricts this type of service to the terminal stage (i.e., the last twelve months of life). Palliative care according to the WHO definition, when applied to dementia, may start early in the natural course of the disease and is not restricted to the final stage— because at present the majority of dementia syndromes are incurable from the start. More than 95 percent of all patients suffering from dementia, and 100 percent of patients with AD, have an irreversible and incurable disease. Ultimately they will die from their dementia or from their co-morbidity. However, there is a controversy about the duration of AD from diagnosis till death. For a long time, a median duration of from 5.0 to 9.3 years has been accepted, but a recent report showed a median duration of only 3.0 years (with probable AD, 3.1 years) (Wolfson et al., 2001). These recent data on the natural history have had considerable impact on our thinking about dementia, changing it from an incurable, slowly progressive disease to an incurable disease with a rapidly progressive evolution. However, because of the large differences in survival reported so far, more data is needed. In the final stages of dementia, in which patients cannot walk, swallow, sit, stand, or toilet, patients usually are cared for in nursing homes, and in cases of concurrent disease most often are no longer referred to a hospital. Given both the differences in interpretation of palliative care as a specific model and expertise in health care and the highly variable, individual course of dementia, we support an individualized decision on when the leading principle in the management of a patient with dementia should be palliative care. This decision should be a team decision, agreed on by all the health care professionals actively involved in the patient’s treatment. Reasons to decide to turn to a strict palliative treatment may be that other treatment does not serve a reasonable goal anymore or that the burdens of treatment outweigh the benefits. In the final stages of dementia, palliative care may be limited to symptomatic care, which in the Netherlands is regarded as even more restrictive than palliative care. Symptomatic care aims at lightening the burden of symptoms, but the agents used to this end are not used if they would prolong life; in other words, in symptomatic care prolongation of life is considered a worse course than optimal treatment of symptoms. For example, under palliative care, shortness of breath caused by a bronchitis may be treated with antibiotics and, in treating the infection , life extension is taken for granted. In symptomatic care, the bronchitis should not be treated with antibiotics because this might cure the bronchitis and extend survival time, which would no longer be in accordance with the patient’s Hospital-based Palliative Care and Dementia 81 [54.81.185.66] Project MUSE (2024-03-19 12:30 GMT) wishes. In such a case, only anti-cough agents, such as oxygen and opiates, should be given. In Dutch...