Physicians’ perceived barriers and proposed solutions for high-quality palliative care in dementia in the Netherlands: Qualitative analysis of survey data

Abstract

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.

Nurse-Physician Communication Around Identifying Palliative Care Needs in Nursing Home Residents

“…The topic list was informed by literature and a qualitative data set about facilitators to palliative care in dementia reported by elderly care physicians. 5 The interviews were recorded, transcribed verbatim, and analyzed with Atlas.ti version 7.5.18 (2012). We used both deductive and inductive coding adding refined codes related to communication.…”

Good practice in the provision of care for people living with dementia in nursing homes: a systematic review

“…Of the 30 studies included in the review, 16 were qualitative descriptive studies,(13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28) 11 were cross-sectional studies,(28, 29, 30, 31, 32, 33, 34, 35, 36, 37, 38) 2 were mixed methods studies,(39, 40) and 1 was a cohort study. (41) Participants included people living with dementia, relatives, staff working in nursing homes, experts in dementia care, administrators and lawyers.…”

“…(30) The role of family members Involving family members is key in providing good care for people with dementia in nursing homes. 5 (14,15,17,31,47) 1. Effective communication between staff and family members has been reported to be inadequate, in particular in relation to information exchange and shared decision making.…”

“…Good practice in providing care for people living with dementia in nursing homes, themes identified through systematic review of the literature (2020 to 2023). Increased staff resources with an emphasis on the staff retention, recruitment and resource adequacy are needed to improve the continuity of care (17,31). …”

A Situation-Specific Theory of End-of-Life Communication in Nursing Homes

“…At the health system level, end-of-life communication reduced healthcare and hospital costs [11,42]. Recently, timely and frequent end-of-life communication between HCPs and FCs has been proposed as a solution for high-quality palliative care in life-limiting conditions such as dementia [43]. However, knowledge on how end-of-life communication can promote the transition from curative-oriented care to palliative-oriented care in severely ill people is still limited [9,21,38].…”