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Patient centered decision making in palliative cancer treatment: a world of paradoxes

Hanneke de Haes, Nelleke Koedoot
Patient Education and Counseling 2003, 50 (1): 43-9
Patient centered palliative cancer care would imply, first, the introduction of psychosocial endpoints when evaluating treatment and making decisions. Second, patient control would have to be enhanced by information giving and increased decision involvement. We have indicated that paradoxes exist when a patient centered approach is advocated in the context of palliative cancer care. So-called patient oriented outcomes, like quality of life, once introduced seem to be disregarded by many patients themselves and survival is given a more important weight. Likewise, physicians seem to be inclined to treat patients aggressively for little benefit rather than providing supportive care. Both parties seem to prefer to do something actively to maintain a semblance of control over the disease process. Giving treatment, even if aggressive, is a way to avoid the confrontation with the little efficacy that the physician has to offer to incurable cancer patients. This mechanism is reflected in the content of conversations in palliative care. Patient centered care would imply that patient control and autonomy are enhanced. However, again paradoxically, many patients seem to want to avoid information and leave the decisions to be made by their doctors. Physicians, then, follow such wishes while paying more attention to aggressive therapy than to the notion of watchful waiting. This may help to avoid the painful confrontation with bad news. Dilemmas then remain. Patients wishing to maintain hope and avoid emotional impact of a full understanding of their prognosis may rather not be informed brusquely about prognosis or the aims of supportive therapy and forced to make an informed decision. However, by giving more aggressive, maybe even futile, treatment, and withholding supportive care patients may receive less than 'quality end-of-life care'. Therefore, information about less intrusive strategies should still be given in a cautious manner, while regarding the patient's defenses respectfully.


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