Journal of palliative medicine
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Although advances in therapy for cystic fibrosis (CF) have dramatically increased the average life span of patients, the disease is still uniformly fatal. Little attention has been paid to methods of palliative care for patients with cystic fibrosis in the medical literature. The primary palliative care issue in end-stage CF is the management of dyspnea. ⋯ The use of various modes of assisted ventilation in end-stage CF will add new challenges to the compassionate provision of end-of-life care. In addition to these medical issues, palliative care in CF presents some unique psychosocial issues: there may be more than one family member with the disease, and there is an involved patient community also affected by end-of-life plans. A family-centered approach to end-of-life care for patients with CF is essential.
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Place of care in advanced cancer: a qualitative systematic literature review of patient preferences.
It is commonly written that more patients wish to die at home than currently achieve this. However, the evidence for preferences for place of terminal care and death has not been systematically reviewed. ⋯ Home care is the most common preference, with inpatient hospice care as second preference in advanced illness. Meeting these preferences could be important outcomes for services. Study designs in this area need to be improved.
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The American Board of Hospice and Palliative Medicine (ABHPM) was formed in 1995 to establish and implement standards for certification of physicians practicing hospice and palliative medicine and, ultimately, accreditation of physician training in this discipline. The ABHPM has created a certification process that parallels other member boards of the American Board of Medical Specialties (ABMS). After 3(1/2) years and the administration of seven examinations, 623 physicians have achieved board certification in hospice and palliative medicine. ⋯ There is significant physician interest in seeking professional recognition of expertise in caring for terminally ill persons and their families through creation of a specialty in hospice and palliative medicine. Certification of physicians and accreditation of training programs are key elements in this process. This process will encourage more physicians to enter this field and provide needed expertise in the management of patients with progressive disease for whom the prognosis is limited, and the focus of care is quality of life.
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This article by the hospice case manager and inmate volunteer coordinator at the Louisiana State Penitentiary (LSP) hospice program describes the program's major features, how it was started and is sustained within the confines and culture of prison life, and how the challenges to implementing a hospice program within a maximum security prison continue to be met. Recommendations are offered for undertaking a hospice initiative in a correctional facility. The LSP Hospice Program was honored in May 2000 with the Circle of Life Award from the American Hospital Association. This article is excerpted from a thematic issue, "Hospice in Prison," Volume 2, Number 3, 2000 of the online journal, Innovations in End-of-Life Care at http://www.edc.org/lastacts/
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The experience of cancer pain is known to greatly affect family caregivers as well as patients. There are many demands placed on caregivers of cancer patients with pain at home as a result of the shifting of care from the acute setting to the home. These complex demands significantly affect caregiver quality of life. ⋯ Study findings reveal disruption to family caregiver quality of life in the areas of physical, psychological, social, and spiritual well-being. There is also a continued need for education regarding cancer pain management. Comparison between patients and family caregivers demonstrates that pain impacts both the patient experiencing it and their caregivers.