Background: The literature indicates that palliative care for people with dementia needs to be enhanced. Objectives: To assess barriers to providing high-quality palliative dementia care and potential solutions to overcome these barriers, as perceived by physicians responsible for end-of-life care with dementia. Design: Cross-sectional study. Setting: The Netherlands. Participants: A representative sample of 311 elderly care physicians of whom 67% (n=207) responded. Measurements: A postal survey in 2013 containing open-ended items probing for barriers in the elderly care physicians’ practices and possible solutions. Answers were coded and grouped using qualitative content analysis and presented to expert physicians in 2021. Results: Barriers to palliative care in dementia were (1) beliefs held by family, healthcare professionals or the public that are not in line with a palliative care approach, (2) obstacles in recognizing and addressing care needs, (3) poor interdisciplinary team approach and consensus, (4) limited use or availability of resources, and (5) poor family support and involvement. Suggested solutions were improving communication and information transfer, and educating healthcare staff, families and the public about palliative care in dementia. Timely and frequent communication with the family, including advance care planning, and more highly skilled nursing staff were also proposed as solutions. Conclusions: The results suggest a strong need for ongoing education for healthcare professionals about palliative dementia care. Strengthening interprofessional collaboration and shared responsibility for advance care planning is also key. Increasing public awareness of the dementia trajectory and the need for a proactive approach call for a broader societal agenda setting.
ObjectivesQuestion prompt lists (QPLs) support patients and family to ask questions they consider important during conversations with clinicians. We aimed to evaluate how a QPL developed for specialist palliative care is used during consultations and is perceived by patients and family, and how non-specialist clinicians would use the QPL. We further developed the QPL using these perspectives.MethodsThe QPL is part of a conversation guide on palliative care. Patients and family were asked to select topics and questions before consultation with a palliative care consultant. This qualitative study (2016–2018) included 18 interviews with patients and family who had used the QPL, 17 interviews with non-specialist clinicians and 32 audiotaped consultations with palliative care consultants. The data were analysed thematically and iteratively to adjust the QPL accordingly.ResultsAll participants considered the QPL elaborate, but recommended keeping all content. Patients and family found that it helps to structure thoughts, ask questions and regain a sense of control. They also felt the QPL could support them in gathering information. Although it could evoke strong emotions, their real challenge was being in the palliative phase. Clinicians considered the QPL especially helpful as an overview of possible discussion topics. During audiotaped consultations, topics other than those selected were also addressed.ConclusionBy using the QPL, patients and family felt empowered to express their information needs. Its use may not be as unsettling as clinicians assume. Nevertheless, clinicians who hand out the QPL should introduce the QPL properly to optimise its use.
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