Title: End of life care in care homes: supporting the workforce and reducing hospitalisations
Funder: Chief Scientist Office, Scotland

Abstract: Up to 50% of care home residents in the UK die within 6 months of admission. Care homes provide personal care and support to people aged 65 and over, and may also provide nursing care. Residents are often frail and have lots of complex health problems. Despite their needs, residents often don’t get access to end of life care from hospice teams, and so may experience unnecessary and distressing symptoms at end of life. This is unjust: older people in residential care should receive the same high quality of palliative care which is provided in the community. Palliative care is specialist support for people with life-limiting illnesses, and includes physical, emotional and spiritual care for the patient and their family, _x000D_ _x000D_ Recent work conducted in Australia tested a new way to provide specialist palliative care to care home residents. The new approach is called ‘Palliative Care Needs Rounds’ (or ‘Needs Rounds’). Needs Rounds are monthly staff meetings where up to 8 residents are prioritised for discussion, focusing on those most at risk of dying without an adequate plan in place. Needs Rounds include a review of the person’s physical, psychological, and social wellbeing, education for staff on symptom management, and a plan of necessary actions such as medicine reviews or case conferences. _x000D_ _x000D_ The Australian study showed that people died in their preferred place more often, had a better quality of death, and stayed out of hospital (saving $1.7m over a year -nearly £1m). Care home staff also felt more confident looking after the residents. _x000D_ _x000D_ We want to understand whether Needs Rounds will work in the UK. The study will work with 6 case study sites. Each case study consists of a specialist palliative care service with 4-6 local care homes. We will conduct individual/small group interviews to learn how Needs Rounds should be adapted in each of the 6 case study sites. We’ll then run workshops to co-design Needs Rounds with site clinicians. We will then use the UK-version, and get feedback from local staff on how it’s working and whether anything needs doing differently. We will change Needs Rounds as we go. At the end of the study we will have produced a UK-version of Needs Rounds, and have evidence on whether it helps UK care home residents to stay out of hospital, improves symptom control for better deaths, improves staff capability to look after older people in care homes at end of life and reduces hospital costs. _x000D_ _x000D_ Our team includes the lead Australian researcher (Forbat) and clinician (Johnston). We have strong links with specialist palliative care services and care homes. The team’s PPI co-investigators will link with other PPI groups of family carers to give feedback on the data, co-design and findings. We also have experts in care homes, specialist palliative care, research methods and health economics. _x000D_ _x000D_ The progress and findings will be shared with care homes, specialist palliative care teams, informal carers, and academics using traditional media, social media, conferences, journal articles and public engagement events. We will also inform governments of the findings using a policy briefing, so they can commission appropriate services for care home residents at end of life. We will develop an implementation package that provides all the tools and resources required to adopt UK Needs Rounds.

Lay abstract: Research question_x000D_ How can an evidence based model of improving end of life care in care homes be adapted for use in the UK? _x000D_ _x000D_ Background_x000D_ Palliative Care Needs Rounds (hereafter Needs Rounds) are monthly hour-long clinical meetings between a specialist palliative care clinician and care homes. They focus on residents most likely to die without a plan in place, and provide staff with case-based education to develop end of life skills to manage symptoms and care needs, promote anticipatory planning through discussion of bio-psycho-social needs (e.g. power of attorney and prescribing) and trigger case conferences and palliative care clinical work. Needs Rounds were developed and tested in Australia in a stepped wedge randomised control trial (n=1700 residents). The trial demonstrated substantial cost savings due to significantly decreased number and duration of admissions to hospital, residents had improved quality of death/dying, and staff improved in their capability to provide end of life care. Needs Rounds could be adopted in the UK, offering an evidence-based advantage over current end of life care in care homes. _x000D_ _x000D_ Aims and objectives_x000D_ The aim is to co-design and implement an acceptable, feasible and scalable UK model of Needs Rounds, which offers specialist palliative care outreach to care homes, in order to improve the lives and deaths of care homes residents. _x000D_ Two objectives will achieve this aim; _x000D_ (i) Co-design a UK version of Needs Rounds, which is responsive to the context-mechanisms-outcomes of UK implementation. (Phase 1)_x000D_ (ii) Implement the adapted model of care, assess feasibility, acceptability and effectiveness, and ultimately propose how the model of care can be further refined and adopted in the UK context to reap the benefits demonstrated in the Australian work. (Phase 2)_x000D_ _x000D_ Methods_x000D_ This is a two-phase study, using a critical realist implementation science framework (iPARIHS) in six case study sites. Each case is comprised of a specialist palliative care service with 4-6 care homes in locations across England and Scotland. _x000D_ _x000D_ Phase 1: Qualitative interviews (n=40) with key stakeholders (residents, relatives, specialist palliative care clinicians, care home clinicians/managers, and acute care staff). Interview analysis will then feed into workshops (one per case study site) to co-design UK Needs Rounds, based on the contextual features, structures, behaviours, and processes across cases._x000D_ _x000D_ Phase 2: Test and refine the theories generated in Phase 1. We will assess acceptability, appropriateness, feasibility, implementation cost, coverage, and sustainability. These assessments will report contexts, mechanisms and outcomes to generate a mid-range theory of implementation which conceptualizes the core learning from across all sites. _x000D_ _x000D_ Timelines for delivery_x000D_ 28 months, from 1-July-2020. _x000D_ _x000D_ Anticipated impact and dissemination_x000D_ UK Needs Rounds will reduce the number and lengths of hosptialisations, improve quality of dying, and improve care home staff capacity to manage people’s symptoms and care needs at the end of life. _x000D_ An innovative translation package will include instructional videos, which draw on learning theory, to aid translation and dissemination. Informal carers will be reached via media releases, carers’ week stories, talks at carer groups, updates in carer newsletters, and via science festivals. Standard academic dissemination via conferences and peer review journal articles will also be used.

Research activity codes: 7.2 END OF LIFE CARE;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE