Paying for end of life care in the UK

2020 ◽  
Vol 104 (561) ◽  
pp. 495-506
Author(s):  
John Stubbs ◽  
Jacob Adetunji

To live to a ripe old age, untroubled by health problems, physical or mental, is an almost universal aspiration. But most people are not so lucky and will likely be in care homes for their final years, with varying levels of disease, disability and dementia. Kinley et al [1] maintain that over a fifth of the population of developed countries die in care homes. Moreover, the financial cost of this end of life care, which is the focus of this paper, can be daunting and require much planning [2]. It was reported in 2017 that, in the UK, care home costs are rising up to twice as fast as inflation [3]. Consequently the question arises about the long term affordability of such care to those having to fund it, a question that ever more people both nationally and globally are having to confront.

2021 ◽  
Vol 9 (20) ◽  
pp. 1-76
Author(s):  
Neil H Chadborn ◽  
Reena Devi ◽  
Christopher Williams ◽  
Kathleen Sartain ◽  
Claire Goodman ◽  
...  

Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improving health care for residents, there is a lack of knowledge about the role of general practitioners. Objectives First, to review reports of research and quality improvement (or similar change management) in care homes to explore how general practitioners have been involved. Second, to develop programme theories explaining the role of general practitioners in improvement initiatives and outcomes. Design A realist review was selected to address the complexity of integration of general practice and care homes. Setting Care homes for older people in the UK, including residential and nursing homes. Participants The focus of the literature review was the general practitioner, along with care home staff and other members of multidisciplinary teams. Alongside the literature, we interviewed general practitioners and held consultations with a Context Expert Group, including a care home representative. Interventions The primary search did not specify interventions, but captured the range of interventions reported. Secondary searches focused on medication review and end-of-life care because these interventions have described general practitioner involvement. Outcomes We sought to capture processes or indicators of good-quality care. Data sources Sources were academic databases [including MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Cumulative Index to Nursing and Allied Health Literature, PsycInfo® (American Psychological Association, Washington, DC, USA), Web of Science™ (Clarivate Analytics, Philadelphia, PA, USA) and Cochrane Collaboration] and grey literature using Google Scholar (Google Inc., Mountain View, CA, USA). Methods Realist And Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES) guidelines were followed, comprising literature scoping, interviews with general practitioners, iterative searches of academic databases and grey literature, and synthesis and development of overarching programme theories. Results Scoping indicated the distinctiveness of the health and care system in UK and, because quality improvement is context dependent, we decided to focus on UK studies because of potential problems in synthesising across diverse systems. Searches identified 73 articles, of which 43 were excluded. To summarise analysis, programme theory 1 was ‘negotiated working with general practitioners’ where other members of the multidisciplinary team led initiatives and general practitioners provided support with the parts of improvement where their skills as primary care doctors were specifically required. Negotiation enabled matching of the diverse ways of working of general practitioners with diverse care home organisations. We found evidence that this could result in improvements in prescribing and end-of-life care for residents. Programme theory 2 included national or regional programmes that included clearly specified roles for general practitioners. This provided clarity of expectation, but the role that general practitioners actually played in delivery was not clear. Limitations One reviewer screened all search results, but two reviewers conducted selection and data extraction steps. Conclusions If local quality improvement initiatives were flexible, then they could be used to negotiate to build a trusting relationship with general practitioners, with evidence from specific examples, and this could improve prescribing and end-of-life care for residents. Larger improvement programmes aimed to define working patterns and build suitable capacity in care homes, but there was little evidence about the extent of local general practitioner involvement. Future work Future work should describe the specific role, capacity and expertise of general practitioners, as well as the diversity of relationships between general practitioners and care homes. Study registration This study is registered as PROSPERO CRD42019137090. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 20. See the NIHR Journals Library website for further project information.


BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.


2018 ◽  
Vol 18 (1) ◽  
Author(s):  
Lynn McCleary ◽  
Genevieve N Thompson ◽  
Lorraine Venturato ◽  
Abigail Wickson-Griffiths ◽  
Paulette Hunter ◽  
...  

2010 ◽  
Vol 24 (8) ◽  
pp. 828-838 ◽  
Author(s):  
J. Hockley ◽  
J. Watson ◽  
D. Oxenham ◽  
S.A. Murray

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A32.2-A32
Author(s):  
Mary O'Brien ◽  
Jennifer Kirton ◽  
Katherine Knighting ◽  
Rob Gandy ◽  
Barbara Jack ◽  
...  

2021 ◽  
Vol 11 (5) ◽  
pp. 433
Author(s):  
Shirin Vellani ◽  
Veronique Boscart ◽  
Astrid Escrig-Pinol ◽  
Alexia Cumal ◽  
Alexandra Krassikova ◽  
...  

Due to the interplay of multiple complex and interrelated factors, long-term care (LTC) home residents are increasingly vulnerable to sustaining poor outcomes in crisis situations such as the COVID-19 pandemic. While death is considered an unavoidable end for LTC home residents, the importance of facilitating a good death is one of the primary goals of palliative and end-of-life care. Nurse practitioners (NPs) are well-situated to optimize the palliative and end-of-life care needs of LTC home residents. This study explores the role of NPs in facilitating a dignified death for LTC home residents while also facing increased pressures related to the COVID-19 pandemic. The current exploratory qualitative study employed a phenomenological approach. A purposive sample of 14 NPs working in LTC homes was recruited. Data were generated using semi-structured interviews and examined using thematic analysis. Three categories were derived: (a) advance care planning and goals of care discussions; (b) pain and symptom management at the end-of-life; and (c) care after death. The findings suggest that further implementation of the NP role in LTC homes in collaboration with LTC home team and external partners will promote a good death and optimize the experiences of residents and their care partners during the end-of-life journey.


2016 ◽  
Vol 31 (2) ◽  
pp. 102-108 ◽  
Author(s):  
Tabitha Thomas ◽  
Isla Kuhn ◽  
Stephen Barclay

Background: Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals. Aim: To understand the experiences of patients discharged to care homes for end-of-life care. Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care. Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making. Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.


2013 ◽  
Vol 25 (11) ◽  
pp. 1849-1858 ◽  
Author(s):  
Gill Livingston ◽  
Elanor Lewis-Holmes ◽  
Catherine Pitfield ◽  
Monica Manela ◽  
Diana Chan ◽  
...  

ABSTRACTBackground:One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes.Methods:We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers’ after-death interviews pre- and post-intervention.Results:Post-intervention there were significant increases in documented advance care wishes arising from residents’ and relatives’ discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes.Conclusion:This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.


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