Journal of palliative medicine
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Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. ⋯ This meeting provided an in-depth opportunity to incorporate new concepts into palliative and end-of-life care for individuals with a range of rare diseases and their caregivers. This report presents a summary of the workshop.
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The observed structured clinical examination (OSCE) is an important tool to assess clinical competencies; however, there are no reported palliative care OSCEs for medical student assessment. ⋯ A new OSCE to assess palliative care competencies was feasible to implement with high inter-rater reliability, evidence supporting validity, and moderate internal consistency. We believe this OSCE would prove useful to assess students' primary palliative care competency and to evaluate curricula in palliative care.
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To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life. ⋯ This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.
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End-of-life decisions and advance directives require timely physician-patient discussions but barriers exist to these discussions. ⋯ Female patients are more likely to receive early DNR orders from their female physicians. Gender and gender interaction between physician and patients may potentially influence the timing of receiving DNR order.
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Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited. ⋯ Assessment of R/S needs of caregivers of pediatric palliative care patients is performed less often than desired, even though it can improve perceptions of support from medical teams. Use of hospital-based R/S resources can increase spiritual comfort. Standardizing assessment of caregivers' R/S needs and referral to appropriate resources is a target for quality improvement in pediatric palliative medicine.