Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a large role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. This literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Findings of the literature review broadly include the importance of consistent communication with providers, parental involvement in the care process, and the minimization of infant suffering. Providers must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop interventions and protocols that better incorporate these needs.

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Thesis advisor: Andrea Vicini / Thesis advisor: Daniel Daly / Thesis (STL) — Boston College, 2023. / Submitted to: Boston College. School of Theology and Ministry. / Discipline: Sacred Theology.

Care homes play a major role in supporting people with dementia at the end of their lives. Seeking to understand the views of staff on the care they provide, Nicola Wheeler and Jan R Oyebode held focus groups with a range of staff in nine care homes in the West Midlands. Here they discuss their findings and implications for practice.

Yes / To evaluate a 24/7, nurse led telephone and video-consultation support service for patients thought to be in the last year of life in Bradford, Airedale, Wharfedale and Craven. Method: Activity and other data recorded at the time of calls were analysed. Interviews with 13 participants captured patients and carers perspectives. Results: Between April 1st 2014 and March 31st 2015, 4648 patients were registered on the Gold Line. 42% had a non-cancer diagnosis and 46% were not known to specialist palliative care services. The median time on the caseload was 49 days (range 1-504 days). 4533 telephone calls and 573 video consultations were received from 1813 individuals. 39% of the 5106 calls were resolved by Gold Line team without referral to other services. 69% of calls were made outside normal working hours. Interviews with patients and carers reported experiences of support and reassurance and the importance of practical advice. Conclusion: A nurse led, 24/7 telephone and video consultation service can provide valuable support for patients identified to be in the last year of life and their cares. The line enabled them to feel supported and remain in their place of residence, reducing avoidable hospital admissions and use of other services. Providing this service may encourage health care professionals to identify patients approaching the last year of life, widening support offered to this group of patients beyond those known to specialist palliative care services. / Health Foundation adn Shared Purpose

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No / People with dementia need increasingly specialised support as they approach the end of life, and so too do their families and the professionals working with them. This book describes not only what can be done to ensure maximum quality of life for those in the final stages of the illness, but also how best to support those involved in caring for them. Emphasising the importance of being attuned to the experiences and needs of the person with dementia, the authors explain why and how they should be included in decisions relating to their end of life care. Practical strategies for ensuring physical and emotional wellbeing are provided, drawing on useful examples from practice and providing solutions to potential challenges that carers and family members will face. Dilemmas surrounding end of life care are explored in detail, including the moral dilemma of medical intervention, and the authors suggest ways of supporting family members through the process in terms of providing information, helping them adjust to change and loss, and involving them in their relative's care, and at how care staff can be supported through appropriate education and training, team building and information-giving.

Yes / Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. Methods and analysis: To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. Ethics and dissemination: Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested. / Marie Curie Cancer Care