Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy.

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

Palliative long-term abdominal drains for the management of refractory ascites due to cirrhosis: a consensus document.

Palliative care remains suboptimal in advanced cirrhosis, in part relating to a lack of evidence-based interventions. Ascites remains the most common cirrhosis complication resulting in hospitalisation. Many patients with refractory ascites are not candidates for liver transplantation or transjugular intrahepatic portosystemic shunt, and therefore, require recurrent palliative large volume paracentesis in hospital. We review the available evidence on use of palliative long-term abdominal drains in cirrhosis. Pending results of a national trial (REDUCe 2) and consistent with recently published national and American guidance, long-term abdominal drains cannot be regarded as standard of care in advanced cirrhosis. They should instead be considered only on a case-by-case basis, pending definitive evidence. This manuscript provides consensus to help standardise use of long-term abdominal drains in cirrhosis including patient selection and community management. Our ultimate aim remains to improve palliative care for this under researched and vulnerable cohort.

Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review.

BACKGROUND: As dementia progresses, symptoms and concerns increase, causing considerable distress for the person and their caregiver. The integration of care between care homes and health care services is vital to meet increasing care needs and maintain quality of life. However, care home access to high-quality health care is inequitable. eHealth can facilitate this by supporting remote specialist input on care processes, such as clinical assessment and decision-making, and streamlining care on site. How to best implement eHealth in the care home setting is unclear. OBJECTIVE: The aim of this review was to identify the key factors that influence the implementation of eHealth for people living with dementia in long-term care. METHODS: A systematic search of Embase, PsycINFO, MEDLINE, and CINAHL was conducted to identify studies published between 2000 and 2020. Studies were eligible if they focused on eHealth interventions to improve treatment and care assessment or decision-making for residents with dementia in care homes. Data were thematically analyzed and deductively mapped onto the 6 constructs of the adapted Consolidated Framework for Implementation Research (CFIR). The results are presented as a narrative synthesis. RESULTS: A total of 29 studies were included, focusing on a variety of eHealth interventions, including remote video consultations and clinical decision support tools. Key factors that influenced eHealth implementation were identified across all 6 constructs of the CFIR. Most concerned the inner setting construct on requirements for implementation in the care home, such as providing a conducive learning climate, engaged leadership, and sufficient training and resources. A total of 4 novel subconstructs were identified to inform the implementation requirements to meet resident needs and engage end users. CONCLUSIONS: Implementing eHealth in care homes for people with dementia is multifactorial and complex, involving interaction between residents, staff, and organizations. It requires an emphasis on the needs of residents and the engagement of end users in the implementation process. A novel conceptual model of the key factors was developed and translated into 18 practical recommendations on the implementation of eHealth in long-term care to guide implementers or innovators in care homes. Successful implementation of eHealth is required to maximize uptake and drive improvements in integrated health and social care.

Care home staff experiences of palliative and end-of-life care in care homes during COVID-19

BackgroundCOVID-19 has had a devastating impact on care homes, their residents and staff. Over 37,000 UK care home residents have died from COVID-19;many more have experienced symptoms and distress (Scobie, 2021). There has been very limited examination of palliative and end-of-life care in care homes during COVID-19, or strategies to improve this.AimsTo examine the experiences of care homes in England of providing palliative and end-of-life care during the COVID-19 pandemic and make recommendations for policy.MethodsOnline survey (in REDCap) of care home staff with leadership responsibilities, identified through established networks. The survey included structured data and free-text comments on COVID-19 outbreaks, experiences of symptom assessment and control, and impact on workforce. The primary outcome was staff self-efficacy to provide palliative and end-of-life care (Phillips, Salamonson, Davidson, 2011).ResultsInterim analysis of 66 respondents found that most staff felt confident to provide palliative care, as measured by the self-efficacy scale (median 3.75, range 1-4 ). 51% (33/65) of respondents identified issues with staff shortages during the pandemic;38% (24/64) experienced changes in staff responsibilities;18% (12/65) experienced challenges in recognising that residents may be dying. 18% (12/65) of care homes did not allow visitors at the end-of-life, and 39% (25/64) experienced difficulties in accessing help from other services. 51% (33/65) experienced challenges in providing bereavement support to relatives. Free-text comments identified staff shortages and exhaustion, and lack of support from other healthcare services, as barriers to good care.ConclusionThis is the first national survey to explore provision of palliative and end-of-life care in care homes during the COVID-19 pandemic. The results will be used to inform policy to ensure high-quality provision of palliative and end-of-life care during future pandemics.