J Palliat Care
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Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. ⋯ Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.
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A common question about palliative care from those unfamiliar with the work is, "But isn't it depressing?" This view distances palliative care workers from the general public and reflects a deeply held belief that matters associated with death and dying are negative. Published definitions fall short of capturing a full understanding of the work, making it difficult to communicate the meaning of palliative care. ⋯ Palliative care was described as "a way of living" and, throughout the descriptions, the concept of "vitality" emerged as the core meaning of palliative care. In the current economic environment, where there is competition for health care funding, more widespread agreement about the meaning of palliative care is important if informed decisions are to be made about allocation of resources.
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Despite very little confirming evidence, one of the most pervasive beliefs about dying is that terminally ill people receive a great deal of health care in the last few days, weeks, or months of life. A secondary analysis of 1992/93 through 1996/97 Alberta inpatient hospital abstracts data was undertaken to explore and describe hospital use over the five years before death by all Albertans who died in acute care hospital beds during the 1996/97 year (n = 7,429). There were four key findings: (1) hospital use varied, but was most often low, (2) the last hospital stay was infrequently resource intensive, (3) age, gender, and illness did not distinguish use, and (4) most ultra-high users were rural residents, with the majority of care episodes taking place in small, rural hospitals.