People with dementia often fail to receive palliative care, despite increased recognition of their need and eligibility for such care. The aims of this study were to assess the barriers associated with a lack of implementation of palliative care for people with dementia and to explore whether there is a gap in knowledge necessitating further study. We reviewed the English literature published from 2000 to 2016, related to barriers to palliative care for people with dementia. Twenty-two articles met inclusion criteria for the review. Most originated in Europe or North America and were qualitative in nature. Four key themes were identified: administrative/policy issues, education, communication, and staff personal characteristics. Barriers to the delivery of palliative care for people with dementia have been studied for more than a decade, yet at present, there is a lack of consensus in practice. More research is needed related to barriers associated with personal characteristics. Such investigations have the potential to improve and better understand the complex nature of palliative care in this population.

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Decision-making by medical and health care staff forms the core of professional practice. Thought processes, including non-clinical considerations, significantly impact how clinical decisions are made. Such considerations become more relevant when addressing end-of-life care decisions for patients with advanced dementia (PAD). Though palliative care is recommended for this population, its implementation tends to vary. Given the medical staff’s significant influence in guiding clinical decisions, we examined thought processes that accompany staff decisions. We used Cognitive Task Analysis (CTA) to analyze interviews conducted with 15 physicians and 11 nurses working in acute care wards in Central Israel. Participants were interviewed regarding their clinical decision-making in a hypothetical scenario of a PAD who presents with an acute, potentially life-threatening medical problem. Moral judgment orientation was the primary factor affecting clinical decision-making for advanced dementia, with a pronounced dichotomous split between deontological and utilitarian approaches. This polarization was highly associated with the medical specialty. Practitioners in surgical wards tended to focus on the patient’s current medical condition, as an isolated or disease-centered illness perspective, supported by deontological moral lines of thinking. This perspective was contrary to that of staff in medical wards who mostly treated the patient from a holistic perspective with a patient-focus approach, supported by utilitarian moral lines of thinking. Although all respondents presented the patient or family as primary decision partners, the practitioners were motivated to make decisions based on unit hierarchies or positions of authority figures. Therefore, clinical end-of-life decisions are influenced by different thinking processes of the health staff and several non-clinical factors. The moral thinking paradigm was found to be associated with a professional orientation. Understanding the subjective, non-clinical aspects of decision-making for PAD might improve end-of-life care in this population.

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