Area of Research: Palliative and End of Life Care
Section 1: Summary of main strands/themes for research
Palliative care is defined by the World Health Organisation as an approach that improves the quality of life for patients and their families who are facing problems associated with life-limiting, usually progressive, illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other issues they may face, including physical, psychosocial or spiritual. End of Life Care is the term used in England to refer to care in the last 12 months of someone’s life.
Our interests in Palliative and End of Life Care (PEoLC) cut across several of the Department’s priorities. PEoLC affects individuals, and those important to them, irrespective of age, ethnicity or socio-economic group, and across a range of conditions (e.g., cancer, respiratory, cardiovascular, neurological, mental health, and frailty) as well as a combination of these conditions, which can often co-occur (referred to as multiple long-term conditions).
There are a breadth of policy issues that the PRU on PEoLC might address. A health inequalities lens should be applied to all work streams:
Access to and quality of care
There is significant variation in access to, and quality of, PEoLC. Provision of evidence on the following would help address our understanding:
- Assessing the best ways to measure access and quality of experience and outcomes in PEoLC.
- Assessing how best to improve access to PEoLC for the frail and elderly population who do not have a specific life-limiting diagnosis.
- Addressing known and emerging health disparities between different groups at end of life, for example related to age, ethnicity, condition, sexual identity and social circumstances (such as deprivation, social isolation etc.).
- Examining the availability and accessibility of PEoLC including support for families/ unpaid carers.
- Examining what drives the year-on-year increase in emergency hospital admissions in the last 3 months of life.
Integration of services to provide personalised care
The recent publication of the Integration white paper (2022) has shone a light on the importance of personalised joined up care for people and populations. We require evidence to develop our understanding of good practice:
- Developing the evidence base on integration of statutory services for people with PEoLC needs including between health and social care services.
- Critical examination of the evidence underpinning use of preferred place of care and preferred place of death data as markers of or proxies for quality of end-of-life care.
- Examining the drivers, levers and barriers of personalised care in the specific context of PEoLC.
- Exploring how we can better personalise support for unpaid carers and those wishing to care for their loved ones at home as part of PEoLC and into bereavement.
There are widely recognised challenges in recruitment and retention of a diverse PEoLC workforce. Research to develop our understanding on the challenges and potential solutions is needed:
- What are the drivers to improve recruitment and retention of the PEoLC workforce including issues relating to the training pipeline?
- What are the factors that underpin the lack of diversity within the PEoLC workforce?
- How can the workforce be best supported to manage demand in light of a predicted increase in deaths to over 800,000 annually by 2045, alongside increasing complexity.
Clinicians must have the confidence and skill set to manage the sensitive communication and holistic management of symptoms required for high quality PEoLC. The following research would provide recommendations to support this:
- Assessing the most effective ways of improving the understanding, skills and confidence of health and social care (HSC) professionals in initiating and undertaking conversations about shared decision-making, treatment options and advance care planning (ACP).
- Assessing the most effective ways of improving the assessment and management skills of HSC practitioners for the physical, psychosocial and spiritual problems experienced by people with progressive life limiting conditions.
Public Understanding of PEoLC
There is often a reluctance to discuss PEoLC, we require evidence to provide greater understanding on the barriers:
- Investigating public understanding of PEoLC and the wider role of society in supporting people who are dying and those important to them.
- Assessing the most effective ways of improving public awareness and opportunity for conversations about palliative and end of life care, including ACP.
We anticipate that the unit will need to draw on expertise from a wide range of professional disciplines and agencies across the NHS, social care and academia. The unit should assemble methodological expertise in quantitative, qualitative and mixed methods research; health services, public health and educational research; health disparities; primary and community services research; implementation science; data and analytics; and behavioural science.
Section 2: Details of policy context and background
National Voices, the National Council for Palliative Care and NHS England (NHSE) have produced a clear description of the vision for PEoLC:
“I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).”
This vision is supported by the NHSE PEoLC programme which focussed on improving access, quality and sustainability of services for all, as well as the NHSE Ambitions Framework and those important to them.
Estimates based on 2018/19 mortality figures suggest that up to 90% of people dying in England may benefit from palliative care, although it is estimated that less than 50% of people actually receive it. It is expected that the demand for PEoLC will continue to rise. Through the COVID pandemic, the number of deaths exceeded the predicted deaths of 2030 and the pressure this put on the health system, so finding effective ways to enable high quality PEoLC, in the face of rising demand and complexity, is now an urgent priority.
Whilst the increase in deaths is mainly associated with an ageing population, it is also vital to acknowledge that the increase in need is compounded by growing numbers of people with multiple long-term conditions, resulting in greater numbers of people living with increased levels of complexity, requiring more specialised support.
It is also worth noting that during the pandemic, analysis of ONS (Office for National Statistics) data by the Institute for Public Policy Research (IPPR) found that in 2020 there was a 35% increase in deaths occurring in the private home. The pandemic also highlighted the importance of data records and sharing of information, both at an individual level (so key preferences for treatment/place of care etc. are communicated between the different services) and at a system level (to better understand trends, e.g., predicted levels of demand and capacity).
Section 3: Justification for research topics
PEoLC affects individuals of all ages, ethnicities, socio-economic groups and conditions including those living with multiple long-term conditions and frailty. Additionally, estimates suggest that for every death 4-5 people are bereaved, therefore the quality of PEoLC has a lasting impact on communities. This policy area cuts across HSC, statutory and voluntary services with multi-professional and integrated delivery required. Identifying PEoLC needs at the right time is vital. Understanding the barriers to this, alongside having the tools to measure efficacy, outcomes and experience are paramount to providing the best possible service to individuals and families at what can be a frightening period of their lives.
The pandemic highlighted significant health disparities at end of life, yet most work to address these disparities focus on prevention, early diagnosis and treatment. Further research demonstrating these disparities and the importance of addressing them will help to ensure that equitable palliative care provision remains a priority, so that those from all groups of society can live and die well.
There is evidence available on what works well, but a more complex and nuanced evidence base to support understanding and gain further insight would be invaluable. The research available on the quality of and access to services is limited or not available, in part due to the challenges of data collection, but additionally due to issues with identifying and measuring a population of people who are entering the final stages of their life.
Applicants should note the cross-cutting issues set out in the PRU Invitation to Tender document, in particular but not limited to, mental health and system transformation and recovery.
Section 4: Other related research activity of which the Unit will need to be aware
- The NIHR has invested £22m in research into PEoLC over the past five years in particular to understand and act on the health inequalities in PEoLC,
- The Nuffield Trust is currently undertaking research to understand the changes in service use before and during the pandemic, due for publication autumn 2022.
- There are 3 relevant Health and Wellbeing (HWB) alliance projects ongoing:
- PEoLC Alliance (Hospice UK, Bereavement Alliance, Together for Short Lives & Marie Curie): ‘Boosting equality of access through identification of need and meaningful engagement at end of life’
- PEoLC Alliance: ‘Data and intelligence to improve understanding of reach and population need’
- Age UK: ‘End of Life support for people without a terminal diagnosis’
- There are emerging plans to create a ‘What Works Centre’ for PEoLC, and we would like the PRU to work with those involved to ensure that any plans are aligned and to avoid duplication.
- There are several voluntary organisations who fund and conduct research on PEoLC, including Marie Curie, Macmillan, Sue Ryder, Motor Neurone Disease Association, Together for Short Lives and Hospice UK.
Section 5: Other issues relevant to this programme of research
Assisted Dying is out of the scope of this PRU.