Journal of palliative medicine
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Continuity of primary care is known to be associated with both improved processes and outcomes of care. Despite continuity being a desired attribute of end-of-life care and despite the desire by most patients with cancer to die at home, there has been no health services research examining this relationship. ⋯ This study demonstrates an association between family physician continuity of care and the location of death for those with advanced cancer. Such continuity should be fostered in the development of models of integrated service delivery for end-of-life care.
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In response to a perceived need for patient access to palliative care and supportive services prior to hospice eligibility, Phoenix-based Hospice of the Valley (HOV) applied for and received a 3-year demonstration grant (1999-2001) from The Robert Wood Johnson (RWJ) Promoting Excellence in End-Of-Life Care Project. HOV established the PhoenixCare project as a demonstration of palliative and coordinated care (case management) services for seriously chronically ill individuals still undergoing active treatment of their disease within a managed care setting. The model emphasized patient/family self-empowerment and prevention. ⋯ Physicians referred fewer than 5% of the patients enrolled while managed care plan case managers and hospital discharge planners referred 83%, suggesting that in organized systems of care physicians are not a primary source for patient referrals. The structure and content of the PhoenixCare model, its general acceptability to patients, physicians and managed care plans, and its applicability to other sites are discussed in this article. Outcomes from the study will be published in a subsequent paper.
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Little is known about the optimal context in which to provide care for the more than 53,000 children who die each year in the United States. Poor training in pediatric palliative care contributes to care that is often fragmented and may neglect the physical, psychosocial, and spiritual needs of the child and family. Pediatric hospice care is frequently not available or not chosen by the family or health care providers. ⋯ All continuity providers would refer another patient. The FOOTPRINTS program promotes quality of care and family and health care provider satisfaction with care. It has been developed to serve as a "best practice" model for care at life's end.
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Patient care needs and patient quality-of-life (QOL) deficits can be significant stressors for family caregivers. Often, greater caregiving demands and poorer patient QOL are associated with greater caregiver strain. However, caregiver coping behavior can attenuate the effect of caregiving stressors on caregiver strain. ⋯ Caregiver strain was significantly correlated with patient ADL needs (r = 0.51), patient psychological distress (r = 0.42), and patient existential QOL (r = -0.65). Regression equations indicated that reframing coping lessened caregiver strain. Caregivers who accepted their loved one's illness, redefined illness-related problems in a more manageable way, and felt capable of solving illness-related problems had less caregiver strain than caregivers who used less of a reframing coping style.