Programmaleider Verpleging, Verzorging en Ouderenzorg; bijzonder hoogleraar 'Verpleging en verzorging in de laatste levensfase', Vrije Universiteit / Amsterdam UMC
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'Palliative care': a contradiction in terms? A qualitative study among cancer patients with a Turkish or Moroccan background, their relatives and care providers.
Graaff, F.M. de, Francke, A.L., Muijsenbergh, M.E.T.C. van den, Geest, S. van der. 'Palliative care': a contradiction in terms? A qualitative study among cancer patients with a Turkish or Moroccan background, their relatives and care providers. BMC Palliative Care: 2010, 9(19)
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BACKGROUND: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care tally with the perspectives of immigrant families with a Turkish or Moroccan background. METHODS: A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 65 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. RESULTS: The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. CONCLUSIONS: Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' from their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms.
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(aut. ref.)
BACKGROUND: Palliative cancer care aims to improve quality of life and ultimately quality of dying, while prolonging life is not an objective anymore when death nears. The question is, however, whether these perspectives on palliative care tally with the perspectives of immigrant families with a Turkish or Moroccan background. METHODS: A qualitative design was used as we were looking for the personal views of 'very ill' cancer patients with a Turkish or Moroccan background, their family members and their Dutch care providers. We interviewed 65 people, involved in 33 cases to obtain information about their views, values and norms on 'good care'. RESULTS: The main concerns about 'good care' expressed by Turkish and Moroccan families were: maximum treatment and curative care until the end of their lives, never having hope taken away, devoted care by their families, avoiding shameful situations, dying with a clear mind and being buried in their own country. Their views conflict, to some extent, with the dominant principles in palliative care, for example, the emphasis on quality of life and advanced care planning, which includes discussing diagnosis and prognosis with the patient. CONCLUSIONS: Patients and their families with a Turkish or Moroccan background often have different ideas about 'good care' from their Dutch care providers. As many of them are aiming at cure until the end of life, they find 'good palliative care' a contradiction in terms.
(aut. ref.)
(aut. ref.)