Journal of palliative medicine
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The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief. ⋯ The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support.
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Access to expertise in palliative management in areas not served by palliative care consultants is an ongoing challenge. This study examines a unique service offered in British Columbia: a 24-hour telephone hotline available to physicians, nurses, and pharmacists across the province. ⋯ British Columbia's Palliative Care Hotline provides a valuable service that has been utilized province-wide with increasing frequency over the 6 years it has been in operation. It serves a variety of professionals and significant number of patients. Rural communities utilize the service with the most frequency, indicating the support needed in these communities. Similar services should be considered in other jurisdictions.
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Canuck Place Children's Hospice (CPCH) is regarded as one of the leading pediatric palliative care systems in the world. Since 1995, it has been providing hospice care free of charge to children and their families living with life-threatening conditions. The pediatric palliative hospice is a relatively new practice in health care, in comparison to the longstanding adult model. As a result, development and implementation of volunteer programs in pediatric hospices is not currently represented in literature. With over 300 volunteers at present, CPCH has built a successful program that can serve as a model in pediatric volunteer services. ⋯ The volunteer program at CPCH fully embraces the life of each child and family. Volunteer selection is the groundwork for ensuring a cohesive work force, while training equips volunteers with the knowledge to carry out their role with confidence. Areas of improvement that have been recognized include offering effective feedback to volunteers and delivering adequate level of training for non-direct care roles. The talents of volunteers at CPCH are diverse, and CPCH aims to recognize and thank volunteers for their continuous contributions.
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Oxygen for refractory dyspnea at the end of life is commonly prescribed, even when the criteria for long-term home oxygen therapy are not met. Is palliative oxygen less likely to be prescribed when a person lives alone at the end of life? ⋯ Presence of a caregiver in the home is associated with palliative oxygen prescription having controlled for time in hospital. This study raises questions about the reasons for oxygen prescription, and the role caregivers may play in initiating requests for therapy.