• Andrew Eisenberger and Jomarie Zeleznik.
• Department of Medicine, Montefiore Medical Center, Bronx, New York, USA.
• Palliat Support Care. 2004 Sep 1;2(3):283-9.

ObjectiveThe standards of care for patients at risk for or with a pressure ulcer in hospitals and nursing homes focus on prevention and ulcer healing using an interdisciplinary approach. Although not a primary hospice condition, pressure ulcers are not uncommon in dying patients. Their management in hospices, particularly the involvement of family caregivers, has not been studied. The objective of this study is to identify the factors that influence care planning for the prevention and treatment of pressure ulcers in hospice patients and develop a taxonomy to use for further study.MethodsA telephone survey was conducted with 18 hospice directors of clinical services and 10 direct-care nurses. Descriptive qualitative data analysis using grounded theory was utilized.ResultsThe following three themes were identified: (1) the primary role of the hospice nurse is an educator rather than a wound care provider; (2) hospice providers perceive the barriers and burdens of family caregiver involvement in pressure ulcer care to be bodily location of the pressure ulcer, unpleasant wound characteristics, fear of causing pain, guilt, and having to acknowledge the dying process when a new pressure ulcer develops; and (3) the "team effect" describes the collaboration between family caregivers and the health care providers to establish individualized achievable goals of care ranging from pressure ulcer prevention to acceptance of a pressure ulcer and symptom palliation.Significance Of ResultsPressure ulcer care planning is a model of collaborative decision making between family caregivers and hospice providers for a condition that occurs as a secondary condition in hospice. A pressure ulcer places significant burdens on family caregivers distinct from common end-of-life symptoms whose treatment is directed at the patient. Because the goals of pressure ulcer care appear to be individualized for a dying patient and their caregivers, the basis of quality-of-care evaluations should be the process of care rather than the outcome of an incident pressure ulcer.

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