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SIX: Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine
- Johns Hopkins University Press
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mc h a t e r s i x Elderly Persons with Advanced Dementia An Opportunity for a Palliative Culture in Medicine Pierre Boitte, Ph.D. For the last twenty to thirty years in the history of Western medicine , the risks of neglect because of therapeutic powerlessness have been endured by two categories of patients: patients who were going to die and those with dementia. The development of the palliative care movement has tried for about twenty years to respond to the first risk,“demanding that the physical,psychological and spiritual needs of patients are met at the end of their life” (Basset et al., 1992, p. 95). The development of geriatrics has promoted the less-well-publicized trend to demand a high quality of care and services for patients with advanced dementia—a position emphasized by Rigaux (1998). Geriatrics tries to make certain that those patients “are understood, recognized in their desires, that their needs are met, their handicaps are adapted to the shape of their lives and above all that they are not put aside from life” (Basset et al., 1992, p. 95). But what happens to these patients with dementia, of which Alzheimer disease (AD) is one good example, when they come to the end of their lives? In this context where neither palliative care medicine nor geriatrics is really completely integrated, even if these two movements each now have a strong foundation, these patients are at risk to suffer, in a cumulative way, from the double exclusion of the dying and of being old and having dementia. It could be possible in our societies to unite these two movements in order to ensure a palliative care approach for persons with dementia. If such a union were to come true, it would be to the honor of a medicine that too often is said to be dehumanizing because of too much reliance on technique. It would prove itself equal to the existential challenges created nowadays by our aging societies, especially the increasing prevalence of AD. In order to become effective, such potential requires taking a departure from a too-ideal model of palliative care as is at times administered by some professional bodies. m An “Ideal Model” of Palliative Care The palliative care movement, introduced in France in the late 1970s, has been developed and strengthened mainly thanks to the experience of the St Christopher Hospice, created in London in 1967. From its English origin, the palliative care movement,supported by Cicely Saunders,has had three parts (Lamau,2001, p. 11): 1. To protest against medicine’s indifference to what those who are going to die go through 2. To attest that the end of life, given certain conditions, is an experience worth being fully lived 3. To invite a larger conception of care, linking technical approaches with the relational dimensions On this basis, certain concepts and notions become imperative: • Take into account the total pain of the person at the end of life, physical pains and psychological sufferings being closely linked • Implement an ethics of relationship by the caregiving team so that fears, anxieties, and questions can really be listened to • Adopt a holistic conception of the human being that does not separate body, psyche, and mind The supporting humanistic philosophy for the palliative movement,whatever its variants were historically (i.e.,first,North American variants,and then worldwide ones) include the following: 8 European Voices on Palliative Care Models [54.242.75.224] Project MUSE (2024-03-19 08:33 GMT) • Death is part of human destiny, and to be against death when it comes, by using all the resources of medical technology, proves to be inhuman and unreasonable. • The last moments of life have worth just as they are. They are to be respected by encouraging the autonomy of the dying person,“his deepest expectations , honored in all its dimensions.” • The patient is considered as a relational being in his or her organic and psychic entirety, which invites “a certain quality of inter-human solidarity” (Lamau,2001,p.17).This solidarity requires that the dignity of every human being, even at the end of life when death is imminent, must be respected. Such a conception of care at the end of life begs for a different approach by caregivers. Actions of the different members of the professional teams (e.g., doctors, nurses, nurse’s aides, psychologists, physical therapists, social workers) stepping into their work with people at the...