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Abstract
Previous work found referrals for end-of-life care are made late in the dying process and assessment processes for care funding, through continuing healthcare fast-track funding often inhibit people being able to die at home. The average time to discharge was 6.3 days and 29% died in hospital, as median survival was only 15 days.
We aimed to support discharge to home within 1 day by December 2023 for patients, wishing to die at home, referred to the end-of-life discharge team in a medium-sized district general hospital in Southwest England.
In phase 1, we identified 13 people on a patient-by-patient basis, learning from obstacles. Barriers identified included sourcing of equipment, communication between teams and clunky paperwork. Median time to discharge was 2 days (range within 24 hours to 8 days) with 2/13 (15.4%) dying prior to discharge. In phase 2, we extended the pilot, and 104 patients were identified; 94 people were discharged to home, with a median of wait of 1 day (range 0–7) to discharge, and 10 (9.6%) died prior to discharge (median 1 day; range 0–4). Median survival from discharge for the 94 who achieved their wishes to go home to die was 9 days (range 1–205 days). Only 26/94 (27.7%) people survived more than 30 days.
Rapid decision-making and structures to support home-based end-of-life care can support more people to die in their preferred place of care, by using a community-based rapid response team instead of, or in parallel with continuing healthcare fast-track funding referral applications. Current pathways and funding models are not fit for purpose in an urgent care scenario when we have only one chance to get it right.
- Palliative Care
- Terminal Care
- Hospice and Palliative Care Nursing
- Healthcare quality improvement
- Patient-centred care
Data availability statement
Data are available upon reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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- Palliative Care
- Terminal Care
- Hospice and Palliative Care Nursing
- Healthcare quality improvement
- Patient-centred care
WHAT IS ALREADY KNOWN ON THIS TOPIC
When clinical teams refer for end-of-life care, they are highly likely to identify someone in the last few days of life, with a median life expectancy of 15 days.
Time to put in place care packages, to enable people to die in their preferred place, may be limited and so systems to facilitate care preferences should be provided at speed.
Prior to this project, the average time to discharge was 6.3 days and nearly a third (29%) died in hospital.
WHAT THIS STUDY ADDS
We showed that rapid care packages and equipment can be put in place within a day for those with limited life expectancy who are keen to die at home for the majority of those who wanted to die at home.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Referrals for end-of-life are made very late in the dying process and provide patient-centred care in parallel with funding applications, enabling more people to die at home with their families, if this was their wish.
Problem
This project was based in Musgrove Park Hospital, an acute care, district general hospital serving a local population of 350 000 and specialist services to a wider population of 800 000. The population served is significantly older than the UK average with double the UK average of over 65s and over 80s.1 The proportion of over 75s is expected to double in the next two decades and by 2033, it is estimated that half of the population in this area will be aged 65 or older.2
The aim for phase 1 was to understand barriers to rapid discharge to home for end-of-life care for 10 patients by March 2023, if that was their preferred place of care, and they were supported in this wish by their next-of-kin. The aim for phase 2 was to facilitate the discharge of patients to their home for end-of-life care within 24 hours by December 2023.
The plan was for patients to be cared for by the Rapid Response Team and parallel funding applications submitted to the continuing healthcare fast-track funding team, with transfer of care to alternative care providers, if funding and alternative care packages could be put in place while the patient was still alive. This model was possible, in part, because our NHS Trust encompasses both acute and community services and all these services are within the ‘Neighbourhoods’ directorate that also includes the palliative care team.
Background
The continuing healthcare fast-track funding pathway in England should enable urgent provision of care to allow people to die in their preferred place of care, be that in their own home or in a care setting.3 Although continuing healthcare fast-track funding was designed for people with ‘rapidly deteriorating condition, and where that condition may be entering a terminal phase,’ there is no specific definition of deterioration rate or prognostic expectation. However, it was a common misconception locally that people were not eligible if their prognosis was over 8 weeks, and rates of continuing healthcare fast-track funding approval were low compared with other areas (verbal communication). This is despite an already elderly local population, with a quarter aged over 65 years and three-quarters of the 11% population growth between 2011 and 2021 being in those in this age group.1 2
A previous project demonstrated median life expectancy for those referred for continuing healthcare fast-track funding to support end-of-life care was 15 days, with one-third dying while awaiting funding and placement.4 Funding was deferred/declined for 29.2%, despite this cohort having a median life expectancy of 25 days, compared with 18 days for those who had funding applications approved (p=0.0056). People spent an average of 6.3 days awaiting care funding and placement decisions, despite this being one-third of their remaining lifespan. This data, in line with studies from other countries, demonstrated that terminal phases of illness are consistently recognised with a median of only 3 weeks of life remaining, which limit opportunities for delivering end-of-life care for people in their preferred setting.5 6
Methods
This was a two-phased project running between October 2022 and December 2023 at the Somerset NHS Foundation Trust. We used the Institute of Healthcare model for improvement, with analysis of the problem using pathway mapping and fishbone diagrams, and Plan-Do-Study-Act cycles to gather test of change data.7 8
The rapid discharge coordinator coordinates information from ward multidisciplinary teams. They act as a liaison with the End-Of-Life Care Coordination Centre, who assess suitability for the rapid discharge process. The end-of-life care coordination centre is a team of nursing and allied healthcare staff, who have a specific dedicated role in brokering and reviewing care provision at the end-of-life, including organising care via the Rapid Response Team, as in this project. The End-Of-Life Care Coordination Centre is a 7-day service with extended service hours 0800–2200. The Rapid Response service is comprised of community-based nursing and care assistant staffed teams, who enact urgent and unplanned care in the community across the county. They have a number of sources of funding and act as part of a community ‘team of teams’ to ensure needs are met alongside district nursing teams. If a person outlives their initial few days of Rapid Response-delivered care, they are reviewed again for ongoing care. This ongoing care was funded via the End-Of-Life Care Coordination Centre during the study, with provision from a ‘preferred care provider’ (independent sector care agency) with enhanced skills in end-of-life care. The End-Of-Life Care Coordination Centre also progress continuing healthcare fast-track funding applications and arrange a care package, if funding is agreed by the continuing healthcare team. This will then fund a patient’s ongoing care from the preferred care provider.
Measures
Data for all patients referred to the CareFFuL Home Care project team of the End-Of-Life Care Coordination Centre were collected prospectively onto a Microsoft Excel database,9 including date of referral to the End-Of-Life Care Coordination Centre, date of discharge from hospital, date of discharge from Rapid Response Team care and from a specialist end-of-life social care provider. Data were not collected on diagnosis or other clinical indicators. For those in whom date of death was not known, hospital electronic health records10 were inspected to look for information for last evidence of clinical activity following discharge and data censored at that point. Patients referred to the CareFFuL Home Care project were followed up, and data collected from the Rapid Response and social care teams. Information regarding costs of care with the social care team was requested. We measured time from referral to the End-Of-Life Care Coordination Centre to discharge or death (whichever was sooner), survival from discharge and time cared for by Rapid Response and specialist social care providers.
Analysis
Data were analysed with Microsoft Excel9 and Prism11 and Kaplan-Meir plots generated, and groups compared with Log-rank (Mantel-Cox) and Gehan-Breslow-Wilcoxon tests, as appropriate. Data were tested for normality and non-parametric datasets were analysed using Kruskal-Wallis and Mann-Whitney tests.
Funding
No specific funding was obtained for this project, although the Trust and the Somerset Integrated Care Board approved the use of the Rapid Response Team for the pilot. Individual staff and the organisation received no financial or other incentivisation to improve time to discharge.
Design
Patient and Public Engagement
This project was devised following the sharing of the results of our previous project,4 which sought to understand how long people survived following continuing healthcare fast-track funding referral, with the Foundation Trust End-of-life Steering Group. It was supported by the lay members and non-executive directors. We gathered feedback during the test-and-learn phase from families and adapted our pathways with this knowledge.
Understanding the problem
A mapping process was performed with stakeholder meetings to understand the steps, processes and barriers involved in discharge planning for end-of-life care. Many reflected that there were fewer barriers and less moral distress to staff, patients and families when the requirements for continuing healthcare fast-track funding referral assessment were dropped during the COVID-19 pandemic. The core CareFFuL Home Care team then met and discussed barriers to end-of-life discharge, using an Ishikawa diagram to refine ideas (figure 1). A pathway map was drawn to describe the process at the beginning of the project (An outline version in online supplemental figure 1) and full pathway mapping details in online supplemental figure 2), which was then refined during the test-and-learn phase (online supplemental figure 3). A driver diagram was produced to understand areas that required attention (online supplemental figure 4).
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Ishikawa fishbone diagram to show factors affecting end-of-life care discharge process.
Strategy
Phase 1
From November 2022 to February 2023, the end-of-life home care team identified patients referred to the End-Of-Life Care Coordination Centre. Entry requirements were (1) the patient should be keen for discharge home for end-of-life care; (2) they were supported in their wishes by their family; (3) and were estimated to have only days to a few weeks of life left. The team held weekly huddle meetings and identified barriers to discharge and their solutions, reflecting and learning from each patient’s journey (table 1). From this, they were able to devise, modify and refine their process map and establish a care pathway, which was again modified as further hurdles were identified and overcome.
Test-and-learn phase with barriers the discharge identified, time to discharge and survival from referral
The original pathway required occupational therapist input at two separate points in the pathway: (1) for initial assessment of equipment requirements; and (2) ordering of equipment once a discharge plan had been put in place and a date for discharge set. This resulted in unnecessary delays, waiting for the appropriate equipment to be prescribed by the occupational therapist and then delivered to the patient’s home. A change was instigated to streamline this so that once the equipment needs were identified by the occupational therapist these were then ordered by the End-Of-Life Care Coordination Centre.
A further significant delay was referral to the continuing healthcare fast-track funding team for funding application before discharge plans could be put in place. This was bypassed by instigating discharge either in parallel with, or instead of, continuing healthcare fast-track funding referral, since previous work had demonstrated low rates of continuing healthcare fast-track funding approval, despite very limited life expectancies.4 Patients were discharged home initially with the support of the Rapid Response Team, who were originally commissioned as a 48-hour service. However, it was rapidly apparent that many patients had only a very few days left to live. There was a high-level of willingness to be flexible, if patients were clearly within the last few days of life, in order to provide continuity of care. In these cases, the Rapid Response Team continued to care at home, rather than seeking continuing healthcare fast-track funding or alternative home care support. This was not just important to patients and families, but also to the Rapid Response Team, who gained a great deal of professional satisfaction by delivering patient-centred care. During this stage, the time to discharge improved rapidly, as trust within and between the team grew that this process could be done at speed well and safely, and that this had a significant positive impact on patients and their families.
Results
Phase 2
From February 23 to December 2023, the pilot moved into the next phase where the new pathway was tested and patients who met the criteria were eligible for the CareFFuL pathway. From September 2023, this pathway was extended to our sister hospital in the NHS Foundation Trust. Weekly huddle meetings continued to refine the process and maintain momentum and visibility of the project. The aim in phase 2 was for all patients who met the criteria to be discharged within 24 hours of referral to the team.
We identified 104 people who met our criteria. Ten people (9.6%) either died on the ward or were too near the end-of-life and not thought stable enough to discharge. For those who did achieve their wish to go home, the median time to discharge was 1 day (range 0 to 7) (figure 2). Median overall survival for these 94 people from discharge was 9 days (range 1 to 205); only 26 of these 94 people (27.7%) survived more than 30 days (online supplemental figure 5). Fifty-one people (54.3%) were looked after solely by Rapid Response, 27/94 (28.7%) were looked after by a specialist end-of-life social care provider, with a further 15/94 (16%) having care transferred from Rapid Response to the social care provider; one patient had continuing healthcare fast-track funded care. In total, 357 days’ care were provided by Rapid Response (median 4 days; range 0–30) and 1137 days by the specialist end-of-life social care provider (median 10; range 1–148) (online supplemental figure 6). Only 50/104 people (48.1%) had a continuing healthcare funding application, either while still in hospital or following discharge; of these, 41 referrals (82%) were approved. It is notable that the outlier, (seven days to discharge), was due to the project being put on hold, due to the initial funding commitment coming to an end. This was an important test-of-change, showing how submitting care funding applications in series with discharge planning affects the pathway, as all other elements remained in place at this time.
Supplemental material
Supplemental material
Run chart of time from referral to End-of-life Care Coordination Centre to discharge for patients referred to the project from February 2023 to December 2023. Prior to the project, time to discharge from continuing healthcare fast-track referral was an average of 6.3 days.
Feedback
Verbal feedback to the team was largely positive. Initial feedback was the team felt under more pressure as there was a ‘lack of down time while awaiting (funding) decision’, which meant other social care referral work was affected, but quickly there was a very high level of enthusiasm, as staff felt they were having benefit to patient care and that they were ‘enjoying their role more and keen to continue’. The feedback from the hospice team was they felt this had ‘reduced the number of late Friday admissions’ to the hospice.
Feedback from families was extremely positive, despite this being a challenging time. The following are examples:
‘I think it was incredible and we were so lucky to have had it; we are so grateful. This was an experience we had, thankfully, never had before and so had no idea what to do. We felt really supported and guided. It made the process less traumatic and actually more peaceful. It also gave me time to arrange for my [sibling] to come over from [abroad] and for my other [sibling] to come and spend time with mum. We were with her in the calm of her flat and could just enjoy sitting with her, as a family, enjoying conversation around her. It was very healing and has left us with only positive memories of her passing. Although the hospital team were great, the environment was loud, distracting and mum was quite distressed in hospital. She had wanted to be at home and had her greatest wish. Thank you.’
‘I just thought I would take a little time to thank your team for the truly excellent care my wife is receiving. Your communications have been great and your carers very thoughtful, cheerful and knowledgeable. They create a happy atmosphere and they are enhancing the quality of life for my wife in her last days or weeks. That is beyond value and I cannot express how grateful I am. Please let your team know how important their work is and how much it is appreciated.’
Costs
This project was about doing the right thing for patients and their families. However, especially in these straightened times, money matters. Our previous project, average time from referral to discharge was 6.3 days,4 compared with 1.02 days for this project. At an estimated cost of £683 per day for an acute hospital bed (2023 costs), this represents a saving of £375 048.96 to the acute Trust and 550 acute bed-days.
In our previous project, there were 439 people referred from our acute hospital for continuing healthcare fast-track funding in a 12-month period. Costs for care for a day at home, with an intensive care package in the last weeks of life, was £1431.1 per week (four-times daily 30 min visits by carers, three weekday nights and one weekend night; 2023 figures). Our previous data demonstrated the average time from referral to continuing healthcare fast-track funding decision was 3.5 days, with a further 2.8 days awaiting discharge (or death). This amounts to £2390.50 per person waiting for a funding decision, and a further £1912.40 awaiting placement, based on our previous baseline data. This equates to an annual cost of £1.89 million to our acute hospital alone, after a decision for end-of-life care is made by the medical teams. If we were able to roll out our 24-hour end-of-life discharge service for all those referred for end-of-life care in our hospital, this would reduce secondary care costs to £683 per person, saving £3619.90 per person. The increased costs to social care would be £1288 per person, assuming maximum social care costs; this results in a potential overall minimum saving of £1.1 million per annum to the Integrated Care Board.
Lessons and limitations
The main lesson is that removing barriers to care and steps in the process led to higher quality care and motivated the team to go further and faster, as they were enthused by being able to ‘do the right thing’. Moral distress is high among NHS workers; a recent study of doctors demonstrated that 65% suffered from moral distress.12 As confidence increased that this was safe and effective, the team were able to help more people and their families. We did not set out to assess this formally, but it was a theme of regular huddle meetings; we would like to explore this formally in future qualitative work.
The system was not ‘abused’ to speed inappropriate discharges. Referrals were overwhelmingly appropriate, with a very short life expectancy for most. A few did much better than expected; a GP letter some months later one patient stated, ‘it obviously takes rather a lot to stop a Somerset farmer’. The terminal phase of an illness appeared to be much easier to predict in people who had cancer as their life-limiting illness, compared with those with heart failure and other fluctuating life-limiting illnesses, as one might expect, although we did not collect data on diagnoses for this project.
This has been a hugely successful project, demonstrating significant benefits to people and their families, the sense of worth and morale for the staff involved, and savings of acute hospital beds and costs for the Integrated Care Board as a whole. There has been a temporary arrangement to support funding for this project for the Rapid Response Team and the social care team from the integrated care board. It is frustrating that this has been put at risk several times during the project, despite its obvious success. This has limited the ability of the team to roll this out further, and at some points, we have had to suspend the project due to concerns about who might be ‘picking up the bill’.
The 2019 NICE evidence review of transitions and discharge arrangements for end-of-life care found no strong evidence of an exemplar or standard process for optimal quality and timing of discharge.13 As is common with much research in the last weeks of life, the review had low confidence in the outcomes reported, on the basis of study design, high risk of bias and indirect causation. The NICE guidance NG27 gives generic guidance for people moving from an inpatient setting to ‘social care’.14 This is included in NG142 ‘End of life care for adults: Service delivery’ as a generic guidance for discharge.15 The specific end-of-life guidance in NG142 targets rapidity and agreement between stakeholders on processes to help smooth transition away from acute bedded care settings. Our pathway is an important example of this integration and agreement, while being led by the needs of people who may only have a few days to live. It is in keeping with NICE guidance and adds to the evidence base of the types of models that help short lives be lived in a place of choosing, in comfort and safety.
There is no national consensus statement on the rapidity of discharge from acute ward to another place of care. There are target times given for some parts of the process, such as a decision for continuing healthcare fast-track funding. This is set at a decision within 48 hours of receipt of application, but only applies to Monday to Friday, during office hours. This target is for a funding decision and does not include time required for communication with patient and families, brokerage, transport, etc. While targets can be helpful, they lack a patient-centred aspect of a fundamental question, ‘If you were somewhere you did not want to be, and had only a short time to live, how quickly would you want to get to your place of choosing?’ Limits or guidance for aspects of complex pathways may summate to expectations within reasonable limits for each stage totalling many days longer than an individual would want, or has the ability to wait for. This study assumes a same-day discharge for the entirety of its cohort. It requires same-day enactment, discussion, planning, brokering and provision of care, 7 days per week. This is an ambitious standard, but better reflects the needs of this patient cohort.
Conclusion
Several studies, including by our team, have shown that life expectancy for those diagnosed to be in their terminal phase of an illness is only around 2–3 weeks, leaving little time to put complex care provision in place to facilitate people dying in their preferred place of care.4–6 As a result nearly a third died while still in an acute hospital.4
Bypassing barriers to the provision of end-of-life care allowed more people to die at home with their families, if this was their wish. Current systems to provide and fund social care for those in the last day to weeks of life are failing many people and their families, with risk of poor experiences and long-term implications for adjustment to bereavement. Stream-lined delivery of end-of-life care, without assessment barriers, and introducing assessment only for those who exceed expectations between 4 and 8 weeks, benefits patients, families and staff.
Data availability statement
Data are available upon reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
The Somerset NHS Foundation Trust Research Ethics team confirmed ethics approval was not required, after completion of the Health Research Authority decision tool (http://www.hra-decisiontools.org.uk/research/), as this was a quality improvement project and part of a wider “‘Last 1000 days”’ programme across the Somerset NHS Foundation Trust.
Acknowledgments
We are grateful to The EOLCCC team at Somerset NHS Foundation Trust, who really believed in this project and worked so hard to get it right, especially Paula Broom for data collection. Our Rapid Response team, especially Louise Bird (Service Manager) and Joanna Teagle (Clinical Lead), for providing excellent care when and where it mattered most. Also, to Iona Brimson, Strategic commissioning manager for Adult Social Care (ASC), for supporting the provision from external providers, even when funding was uncertain. We also thank Kathy Green, our interim Associate Directorate Service Manager, for her kindness, energy, enthusiasm and leadership; Lee Derrick, Somerset FT Improvement Team facilitator for help with pathway mapping; Lizzie Thorn as EOL Operational Group Co-lead; Hayley Peters, Chief Nurse, for her ongoing support of the team to do the right thing for patients, despite competing budgets and lines of responsibility.
Supplementary materials
Supplementary Data
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Footnotes
X @DrJoMorrison1
Correction notice This article has been corrected since it was first published. Figures have been swapped.
Contributors The project was devised by CD and JM with the help of FR following on from our previous project. FR led the initial phases with understanding the problem and ideas for change with contribution of all of the other authors. Data collection was performed by AW with help of the EOLCCC team. JM performed data analysis and write up. The final version was approved by all authors.
JM accepts full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.