The Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct... Show moreThe Dutch health care system fosters a strong public health sector offering accessible generalist care including generalist palliative care. General practitioners are well positioned to conduct ACP, for example, to continue or initiate conversations after hospitalization. However, research shows that ACP conversations are often ad hoc and in frail patients, ACP is often only initiated when admitted to a nursing home by elderly care physicians who are on the staff. Tools that raise awareness of triggers to initiate ACP, screening tools, information brochures, checklists and training have been developed and implemented with funding by national programs which currently focus on implementation projects rather than or in addition to, research. The programs commonly require educational deliverables, patient and public involvement and addressing diversity in patient groups. A major challenge is how to implement ACP systematically and continuously across sectors and disciplines in a way that supports a proactive yet person-centered approach rather than an approach with an exclusive focus on medical procedures. Digital solutions can support continuity of care and communication about care plans. Solutions should fit a culture that prefers trust-based, informal deliberative approaches. This may be supported by involving disciplines other than medicine, such as nursing and spiritual caregiving, and public health approaches. Show less
Abate, Y.; Solomon, K.; Azmera, Y.M.; Fouw, M. de; Kaba, M. 2023
Background Annually 57 million people across the globe require palliative care, 76% are from low- and-middle income countries. Continuity of palliative care contributes to a decline in emergency... Show moreBackground Annually 57 million people across the globe require palliative care, 76% are from low- and-middle income countries. Continuity of palliative care contributes to a decline in emergency room visits., decreased hospital deaths, improved patient satisfaction, better utilization of services, and cost savings. Despite efforts made to develop the palliative care guideline in Ethiopia, the service is not yet organized and linked to primary health care. This study aimed to explore barriers to the continuum of palliative care from facility to household for cancer patients in Addis Ababa. Methods Qualitative exploratory study was conducted with face-to-face interviews with a total of 25 participants. The study population was adult cancer patients, primary caregivers, healthcare providers, volunteers, and nationwide advocates. Data were audio recorded, transcribed verbatim and finally imported to Open code version 4.02 software for coding and analysis. Thematic analysis was guided by Tanahashi’s framework. Results The key barriers to continuity of palliative care included opioid scarcity and turnover and shortage of healthcare workers. A shortfall of diagnostic materials, cost of medications, lack of government backing, and homebased center’s enrollment capacity hampered accessibility. Care providers were instruments of cultural barriers in delivering appropriate end-of-life care, on the other hand, patients’ preference for conventional medicine hindered acceptability. Lack of community volunteers, failure of health extension workers to link patients, and spatial limits fraught utilization. The lack of defined roles and services at several levels and the workload on healthcare professionals affected the effectiveness of the nexus. Conclusion The continuum of palliative care service from health facility to household in Ethiopia is yet in its infancy compromised by factors related to availability, accessibility, acceptability, utilization, and effectiveness. Further research is required to delineate the roles of various actors; th Show less
BackgroundTo support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since... Show moreBackgroundTo support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005.MethodsWe analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care.ResultsThe booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care.ConclusionsWe identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts. Show less
Objective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and... Show moreObjective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. Method Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. Result Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.Significance of results. Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps. Show less
