End-of-life care for people with dementia on a green care farm during the COVID-19 pandemic: a qualitative study.

OBJECTIVE: Green care farms combine agriculture production with health-related, social and educational services. In the Netherlands, they form an alternative to traditional nursing homes for people with dementia. Green care farms that offer 24-hour care, also offers end-of-life care. To date, little is known about end-of-life care for people with dementia on green care farms. This study aimed to explore the experiences of healthcare workers and family caregivers with end-of-life care for people with dementia who died on a green care farm. DESIGN: An explorative, descriptive qualitative design with a phenomenological approach. SETTING AND PARTICIPANTS: A purposive sample of 15 participants - seven healthcare workers and eight family caregivers - from three green care farms in the Netherlands. METHODS: Semi-structured, in-depth interviews were conducted to explore participants' experiences with end-of-life care, including topics such as advance care planning, the influence of COVID-19, and bereavement support. Transcripts were thematically analysed using Braun and Clarke's approach. RESULTS: Four main themes were extracted: 1) tailored care and attention for the individual resident, 2) reciprocal care relationships between healthcare workers and family caregivers, 3) compassionate care and support in the dying phase, and 4) the influence of COVID-19 on end-of-life care. CONCLUSION AND IMPLICATIONS: The overall experience of the healthcare workers and family caregivers was that end-of-life care offered on green care farms is person-centred and compassionate and is tailored to the person with dementia and their family caregivers. Despite the COVID-19 pandemic, healthcare workers and family caregivers were satisfied with end-of-life care on the green care farms. Green care farms may offer a valuable alternative care setting for people with dementia in their last phase of life. More research is needed to investigate green care farms'benefits compared to other, more traditional settings.

[The nurse's role in the process of advance care planning]. / De rol van de verzorgende en verpleegkundige in het advance care planning proces.

The COVID-19 pandemic and its impact on older and frail people underlines the importance of advance care planning (ACP). ACP is a dynamic communication process involving patients, families and healthcare providers, which serves to discuss and document wishes and goals for future care. Currently, ACP practice is often suboptimal. This implies that important decisions about care and treatment may need to be made acutely in crises. Many factors contribute to suboptimal ACP practice. One such factor is ambiguity regarding roles and responsibilities of different disciplines in the ACP-process. The perception that having ACP conversations is primarily a physician's task is a misconception. Specific skills that could contribute to a holistic and person-centered ACP-process are largely lacking in nursing curricula and therefore, may be insufficient and under-utilized. For instance, nursing staff could involve persons in conversations about meaning, quality of life, loss and grief as a part of ACP. Moreover, they may communicate a patient's wishes to other healthcare providers including physicians. Acknowledgement of this potential role, by physicians as well as by nursing staff themselves, is needed for ACP to become a truly interprofessional process.

Practical nursing recommendations for palliative care for people with dementia living in long-term care facilities during the COVID-19 pandemic: A rapid scoping review.

BACKGROUND: The acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. OBJECTIVE: To formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. DESIGN AND METHOD: A rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. DATA SOURCES: We searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. RESULTS: In total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains 'advance care planning' and 'psychological aspects of care'. The lowest number of papers informed the domains 'ethical care', 'care of the dying', 'spiritual care' and 'bereavement care'. We found no papers that informed the 'cultural aspects of care' domain. CONCLUSION: Literature that focuses specifically on palliative care for people with dementia in long-term care facilities during the COVID-19 pandemic is still largely lacking. Particular challenges that need addressing involve care of the dying and the bereaved, and ethical, cultural and spiritual aspects of care. Moreover, we must acknowledge grief and moral distress among nursing staff. Nursing leadership is needed to safeguard the quality of care and nursing staff should work together within an interprofessional care team to initiate advance care planning conversations in a timely manner, to review and document advance care plans, and to adapt goals of care as they may change due to the COVID-19 situation. Tweetable abstract: The current COVID-19 pandemic affects people living with dementia, their families and their professional caregivers. This rapid scoping review searched for academic and grey literature to formulate practical recommendations for nursing staff working in long-term care facilities on how to provide palliative care for people with dementia in times of COVID-19. There is a particular need for grief and bereavement support and we must acknowledge grief and moral distress among nursing staff. This review exposes practice and knowledge gaps in the response to COVID-19 that reflect the longstanding neglect and weaknesses of palliative care in the long-term care sector. Nursing leadership is needed to safeguard the quality of palliative care, interprofessional collaboration and peer support among nursing staff.