Meaning and practice of palliative care for nursing home residents with dementia at end of life.
OBJECTIVE
To describe the meaning and practice of palliative care (PC) for nursing home (NH) residents with dementia at end of life (EOL).


METHODS
Concurrent mixed methods (quantitative retrospective chart review and qualitative field study).


METHODS
Three NHs with varying approaches to EOL care: in-house non-Medicare hospice, Medicare hospice by outside agency, and Medicare hospice by outside agency plus specialized staff and comfort care unit.


RESULTS
Residents' course fluctuated between curative and comfort care, with a noticeable increase in symptoms right before death. Hospice care was short. Most died of complications of dementia. Families found care decisions based on residents' uncertain disease course difficult.


CONCLUSIONS
The role of PC for NH residents with dementia at EOL is complex and poorly understood. As they are in a residential setting, decisions need to be made about how residents live, as well as how they die, thus balancing quality of living/comfort with disease management.
Powers
Bethel Ann
BA
Elaine C. Hubbard Center for Clinical Nursing Research on Aging, University of Rochester School of Nursing, Rochester, New York 14642, USA. bethel_powers@urmc.rochester.edu
Watson
Nancy M
NM
D000368:Aged; D000369:Aged, 80 and over; D003704:Dementia / Q000451:nursing / Q000628:therapy*; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006299:Health Services for the Aged / Q000706:statistics & numerical data; D006707:Homes for the Aged / Q000706:statistics & numerical data; D017051:Hospice Care / Q000379:methods*; D006738:Hospices / Q000191:economics / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D009735:Nursing Homes / Q000706:statistics & numerical data*; D010166:Palliative Care / Q000379:methods*; D011787:Quality of Health Care / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*