Journal of palliative medicine
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Data about pediatric intensive care unit (PICU) family conferences (FCs) are needed to enhance our understanding of the role of FCs in patient care and build a foundation for future research on PICU communication and decision making. ⋯ Most identified FCs involved complex patients or patients who faced decisions affecting the child's quality of life or dying. For many patients who faced life changing decisions we did not identify a FC. Further research is needed to understand how to best utilize FCs and less formal conversations.
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In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. ⋯ The involvement of specialized PPHC appears to lead to a substantial improvement in QoL of children and their parents, as experienced by the parents, and to lower the burden of home care for the parents of severely ill children.
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Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. ⋯ The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.
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The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses. ⋯ NIV can be recommended to patients without concerns regarding increasing carer burden. The predominant source of burden described related to the physical impact of caring for a patient with MND. Services face challenges if this physical burden is to be reduced by providing equipment at an optimal time and successfully coordinating their input.
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Working in hospice care is a highly challenging yet rewarding profession. However, the challenges of working with dying patients and their families can overwhelm even the most highly dedicated professional, leading to burnout, compassion fatigue, anxiety, and depression. ⋯ Poor mental health places staff at risk for burnout and likely contributes to staff leaving hospice care; this is a critical issue as the profession attempts to attract new staff to meet the expanding demands for hospice care.