Articles: palliative-care.
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Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be bewildering and highly anxiety-inducing. However, clinical observations seem to point to a more heterogenous care offer, including a lack or discontinuity of services, at the expense of their quality of life. ⋯ Conclusion: The discussion notices a definitional murkiness about transitions and highlights the fact that the multifaceted and complex nature of transition over time is largely ignored. New research should involve a diversity of participants and include children's voices. Recommendations include clearer concept definitions, health care policies that adopt an ecosystemic approach, and professional training in the systemic family approach in palliative care.
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Comparative Study
A Comparison of Palliative Care Delivery between Ethnically Chinese and Non-Chinese Canadians in the Last Year of Life.
Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. ⋯ Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness.
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Comparative Study
A Comparison of Palliative Care Perceptions Across Metastatic Spine Patients and the General Population.
Background: Palliative care (PC) has been shown to benefit patients with metastatic cancer by managing symptoms, improving quality of life, and facilitating advance care planning. Despite this, PC is often misunderstood and underutilized. Objective: To deepen our understanding of PC barriers seen among the spine metastasis population. ⋯ Conclusion: MST patients are often referred to PC services due to the extreme symptom burden of their disease. Based on this study, in comparison to the GP, people with MST tended to have a more accurate and well-adjusted perception of the goals and functions of PC. Although reassuring, there remains a high proportion of patients who have no knowledge of PC, and groups erroneously associated PC with hospice status.
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J Pain Symptom Manage · Nov 2024
'Recommendations for deprescribing of medication in the last phase of life: an international Delphi study'.
Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life. ⋯ A high level of consensus was reached on recommendations on potential deprescription of several medications for patients with a life expectancy of six months or less.
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J Pain Symptom Manage · Nov 2024
Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care.
Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. ⋯ We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.