Journal of palliative medicine
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Background: Children with severe neurological impairment (SNI) have complex conditions and require family-centered care, yet, this is challenging in the hospital. Objectives: To describe themes related to building parent-clinician rapport and to examine ways to promote family-centered care for children with SNI. Design: Post hoc secondary analysis of data from a qualitative cross-sectional study. ⋯ Themes and suggested tools included (1) continuity of previous decision-making conversations and the decision roadmap tool, (2) maintaining family communication preferences and the relational handoff tool, and (3) recognizing the abilities of each individual child and the developmental inventory tool. Conclusions: Family-centered care for parents of children with SNI may be bolstered by continuity in decision making, maintaining parents' communication preferences, and appreciating the child's individual abilities. Clinical tools may provide opportunities to promote these concepts.
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Background: People with hematological malignancies can deteriorate rapidly to a terminal event and have variable levels of engagement when transitioning to palliative and end-of-life care. Objectives: To describe end-of-life care values and preferences of people with hematological malignancies and explore whether these align with hematology clinicians' perceptions. Design: Two matched anonymous quantitative cross-sectional surveys explored: (1) patients' values and preferences around manner and timing of discussions regarding life expectancy and prognosis, involvement in decision making, and concurrent integration of palliative care with active treatment; and (2) clinicians' perceptions of their patients' values and preferences in relation to prognostic information. ⋯ Clinicians generally underestimated most of these responses. Conclusion: Although our findings indicate that most people believe they would be comfortable discussing prognosis, life expectancy, and wishes at the end of life, clinicians were largely unaware of their preferences. This highlights the need to embed values clarification in routine care for each patient and family.
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Palliative care providers are frequently called to consult on patients with tenuous hemodynamics caused by an underlying serious illness. In this article, we describe a patient with end-stage renal disease who developed hypotension and severe pain due to calciphylaxis. ⋯ We describe challenges encountered when trying to attend to the providers' concerns and guide shared medical decision making with the patient and family. We also summarize the current limited knowledge about the effect of opioids on hemodynamics and highlight a topic in need of further exploration.