Journal of palliative medicine
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Context: Patients with serious illness and their caregivers often face challenging decisions. When faced with these decisions, patients and caregivers may display signs of ambivalence and reluctance toward end-of-life decision making. Methods: We recruited 22 palliative care clinicians to participate in a communication coaching study. ⋯ Conclusion: We found that coders can reliably identify patient and caregiver reluctance and ambivalence. Further, reluctance and ambivalence occur frequently in palliative care encounters. When patients and caregivers have ambivalence, decision making might be hampered.
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Seriously ill patients often experience persistent pain. As a part of a comprehensive repertoire of pain interventions, palliative care clinicians can help by using behavioral pain management. ⋯ The authors have expertise in pain management, clinical health psychology, geropsychology, behavioral science, and palliative medicine. The article reviews the current evidence for behavioral interventions for persistent pain and provides 10 recommendations for behavioral pain management.
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Objective: Death anxiety, represented by the HDQLIFE™ Concern with Death and Dying (CwDD) patient-reported outcome (PRO) questionnaire, captures a person's worry about the death and dying process. Previous work suggests that death anxiety remains an unremitting burden throughout all stages of Huntington disease (HD). Although palliative interventions have lessened death anxiety among people with advanced cancer, none has yet to undergo testing in the HD population. ⋯ Results: Higher baseline HDQLIFE CwDD is associated with 12- and 24-month declines in HDQLIFE Speech Difficulties, neurology quality of life (NeuroQoL) Depression, Suicidality, HDQLIFE Meaning and Purpose, and NeuroQoL Positive Affect and Well-being. Interpretation: Death anxiety may be a risk factor for worsening mental health and speech difficulty. A further prospective study is required to evaluate whether interventions on death anxiety or mental health generally can reduce declines in HRQoL for people with HD over time.
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Palliative care (PC) education is a vital and required part of hematology-oncology fellows' education to build PC skills, attitudes, and knowledge. However, previous research has shown that education in PC is inadequate. This narrative review of the literature on primary PC education during hematology-oncology fellowship programs aims at identifying the current state of PC education, existing gaps, and potential future directions for improving PC education. ⋯ Overall, trainees and program leadership rate current PC education as varied, often inadequate, and in need of improvement. Educational interventions show that some form of PC education increases perceived knowledge and confidence in PC skills. Future studies are needed to develop the most effective and impactful educational models.
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Background: Most people prefer to die at home. Hospice is the standard in end-of-life care for people with Huntington disease (HD), a neurodegenerative genetic disorder that affects people in middle adulthood. Yet, we have little knowledge regarding the place of death for people with HD. ⋯ Conclusions: Our data further suggest that models that predict the place of death for serious illnesses do not appear to generalize to HD. The distribution in the places of death within HD was not uniform. Our findings may assist HD clinicians in communication during goals of care conversations.