Articles: palliative-care.
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Palliative medicine · Mar 2023
Updating international consensus on best practice in care of the dying: A Delphi study.
Good care of the dying has been defined as being able to die in the place of your choice, free from pain, cared for with dignity and supported by the best possible care. This definition underpinned the development of the '10/40 Model' of care for the dying, in 2013. The model includes 10 'Key Principles' that underpin 40 'Core Outcomes' of care. It was necessary to update consensus on the 10/40 Model to ensure that it remains clinically relevant and applicable for practice. ⋯ The updated 10/40 Model will guide the delivery of high-quality care for dying patients regardless of the location of care. Further work should focus on increasing lay participation and participation from low income and culturally diverse countries.
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Background: An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option. Objective: To (1) determine the profile characteristics of patients referred for prenatal palliative care counseling to Charité Universitätsmedizin Berlin, Germany; (2) evaluate pregnancy outcome; and (3) analyze the additional human resources per family required to provide specialized PnPC. Methods: Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020. ⋯ Total human resources (median, range) provided were 563 (0-2940) minutes for psychosocial and 300 (0-720) minutes for medical specialized PnPC per referral. Conclusions: Our data confirm previously observed characteristics of diagnoses, referrals, and outcomes. The provision of specialized and interprofessional PnPC services accounted for ∼14 hours per case of additional human resources.
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Background: Although palliative care programs are beneficial to patients and families, most of the public is unfamiliar with and underutilizes palliative services. TikTok, a fast-growing social media platform worldwide, allows users to share short live-recorded videos and could be used to educate the public about palliative care. Objective: This study characterized palliative care TikTok videos and determined characteristics associated with higher user engagement metrics (views, likes, comments, and shares). ⋯ Caregivers' videos were most likely to be viewed (p = 0.003) and liked (p < 0.001), whereas health care professionals' videos were most frequently shared (p = 0.01). Engagement was highest among videos describing personal experiences (views: p < 0.001, likes: p = 0.002, shares: p = 0.003) and educating (views: p = 0.005, likes: p = 0.002, comments: p = 0.02, shares: p < 0.001). Conclusion: TikTok provides an interactive platform for patients, professionals, and caregivers to share information and experiences about palliative care, making it potentially valuable for explaining palliative care to the public.
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Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice. Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework. ⋯ Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others. Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.
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Palliative medicine · Mar 2023
Combining realist evaluation and transformative evaluation to advance research in palliative care: The case of end of life companionship.
Palliative care requires innovative methods to understand what works, for whom, in what circumstances and why. Realist evaluation has become one prominent approach due to its preoccupation with building, and testing, causal theories to explain the influence of contextual factors on outcomes. Undertaking realist evaluation is not without challenges and may amplify issues of underrepresentation, disempower those working in palliative care, and produce results with poor ecological validity. Complementary approaches are needed which mitigate these challenges, whilst producing credible findings that advances knowledge. ⋯ Contemporary issues in palliative care pertain to the complexity of palliative care, the insufficiency of experimental designs alone, and the challenges of achieving inclusive research participation. In this article it is argued that theory led, participatory, opportunistic and naturalistic approaches can provide an antidote to the issues in the literature. The combination also mitigates many methodological critiques of the individual approaches, by increasing the transformative potential of realist evaluation, and explanatory potential of transformative evaluation.