Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers.

Nursing Ethics
Inbal Halevi HochwaldRachel Nissanholtz-Gannot

Abstract

In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient's decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Exploring and describing differences and similarities of professional staff members' (PSMs') and family caregivers' perceptions of caring for people with end-stage dementia in two different settings. Qualitative research, using semi-structured interviews analyzed through a thematic content-analysis approach. Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings-home hospice unit and home care unit. The study was approved by the Ethics Committee (BBL00118-17). We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing "comfort" over "life-prolonging," clarifying patients' wishes and deciding whether or not to use artificial feeding. Both PSMs and ...Continue Reading

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