Published: 08 December 2022
Version: 1.0 December 22Print this document
This call for applied health and social care research studies aims to increase the evidence base to support health and care services to help people at the end of their lives to live as well as possible and to die with dignity, compassion and comfort.
Palliative care is defined by the World Health Organisation (WHO) as 'an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-limiting illness, usually progressive.' It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems whether physical, psychosocial or spiritual.
In England, the term ‘end of life care’ refers to care that is provided in the last year of life.
Palliative and end of life care covers care provided in any health and social care setting, for both adults and infants, children and young people. It also embraces support for families and carers.
The scope for research includes the impact on patients, families, carers, and workforce, as well as an evaluation of the impact on and uncertainties within the health and social care system. We welcome research proposals for palliative and end of life care in any disease, service or setting, including (but not limited to) hospitals, hospices, specialist centres and services, community services, home and care homes.
The NIHR Programmes involved in this call are: Efficacy and Mechanism Evaluation (EME); Health and Social Care Delivery Research (HSDR); Health Technology Assessment (HTA); and Public Health Research (PHR). Applications which look to address important questions outside of the remit of this particular call may wish to consider the relevant NIHR programme’s researcher-led funding opportunities.
Given the scope of this call, we welcome applications that span the remit of one or more of the participating research programmes, and which comprise of co-ordinated teams of investigators spanning different specialties/disciplines and geographical centres. NIHR particularly welcomes partnerships between research active institutions and others less active to date, and located in geographical areas of deprivation and/or high care need. Given the recent concerns and challenges with research system recovery and reset, applicants should give careful consideration to risk mitigation strategies relating to the deliverability of their study in the current circumstances.
NIHR encourages leaders of the future and the building of research capacity through the research process. Where an individual has not held a grant of this scale before and hence requires mentoring, they could be added as a Joint Lead Applicant; or the mentor could be added as the Joint Lead Applicant. The arrangements for mentoring should be clearly detailed within the proposal.
Palliative and end of life care researchers can also access a wide range of training and career development support through NIHR Personal Research Training awards. These are available at different levels of research experience, and accessible by different professional backgrounds: Research Professorships, Fellowships Programme, Integrated Clinical Academic Programme, Local Authority Academic Fellowships Programme.
Applicants should consider contacting their local NIHR Research Design Service and the NIHR Clinical Research Network for early support and to ensure proposals are appropriately costed and include, where relevant, excess treatment costs and service support costs in all settings and all nations.
In the UK, more than 600,000 people are expected to die each year and, at any one time, many people live with a life expectancy of less than one year. A significant proportion of deaths are predictable, which offers opportunities to plan and consider the wishes and preferences of people with life-limiting conditions for their palliative and end of life care and treatment. It has been estimated that around 90% of people who die need or would benefit from palliative and end of life care.
Various publications highlight that there are challenges in delivering palliative end of life care services in the UK. Organisations are not always set up in a way to deliver the right care, at the right time, for all dying people and their families, in their preferred place. Organisations, patients, carers and families face difficult daily choices, with many uncertainties, as progression of any given disease, and the complex needs of individuals may be difficult to predict and respond to. The Health & Care Act 2022 creates a legal duty for Integrated Care Systems in England to provide palliative care services to meet these needs and requirements are set out in statutory guidance.
The Lancet Commission's report on the Value of Death (2022) explains that deaths in the UK and in most other high-income and middle-income countries often occur in hospitals and in nursing or care homes, stating that 'health care is now the context in which many encounter death'. The report includes an analysis of the use of health services in the last year of life in high-income countries, including the UK, which shows increasing visits to the accident and emergency department, as well as hospital admissions, with a significant increase in the last month of life. The report demonstrates that between 8% and 11% of annual health expenditure for the entire population is spent on the 1% of people who die in that year. The Commission explains that for some, this high expenditure is justified, but they also identified evidence of medical overtreatment, including treatments that are intended to be curative. The authors believe that 'medicalisation of death and dying' has not led to increased symptom relief (for example, pain management) through evidence based methods, nor universal access to palliative care services that can provide better outcomes and improved quality of life for patients and carers.
Although the UK ranked top of 40 countries in a ‘quality of death’ index, based on palliative service provision and national strategic approach, it is estimated that 1 in 4 people are not able to access palliative and end of life care services. The most disadvantaged people in society are least well-served. Inequalities are present throughout life, and increase at the end of it, as evidenced in a Hospice UK report (2021).
Improving the outcomes and quality of care for patients, alongside enabling choice and better experience for patients at the end of their lives, as well as their families and carers, remains a national priority. An independent review of the Liverpool care pathway, ‘More Care, Less Pathway’ (2013) highlighted the importance of further research in palliative and end of life care. In July 2016, the Government’s independent review into choice in end of life care made a commitment to end the variation in end of life care across the health system by 2020.
This commitment to choice is further supported in a national framework for local action 2015-2020 (recently updated to 2026) in the Ambitions for Palliative and End of Life Care. The ambitions include personalised care; fair access to care for everyone regardless of who they are, where they live or their circumstances; the need to maximise comfort and wellbeing; coordinated care, right help at the right time from the right people; as well as staff preparedness, empathy, skills and expertise. Informed and timely conversations are also highlighted.
The NHS Long Term Plan (2019) commits to making palliative and end of life care more personalised and more accessible to everyone. This should address health inequalities and ensure that everyone’s wishes are discussed, and their needs met. More people should be able to die in the place of their choosing.
Some of these ambitions and commitments have been addressed in previous and ongoing NIHR research. However, more research is needed to improve the evidence base to inform patient and carer choice, future practice and guideline updates.
Specific areas of interest for research
For the purpose of this call, some broad categories, informed by Marie Curie’s grant mapping analysis on palliative and end of life care research, have been described below with examples of particular areas of interest for research. However, these are examples and do not represent an exhaustive list. Other areas can be proposed with justification.
1. Workforce and skills issues in end of life care
Workforce issues including both home/community and hospital/hospice care. Future proofing of the health and social care workforce remains an important issue, for example the pipeline of trainee staff, role changes and developing universal end of life care skills across health and social care, and the pool of available staff due to other external forces. This also includes support for informal carers and how to ensure their information and training needs are met as well as their general support needs.
2. Referral/transition across health and social care services, particularly continuity of care and care out of hours
This includes transition within any care services. Patients receiving end of life care are likely to transition multiple times. The quality of handover will have a significant impact on both the patient and their carer/family and on system level pressures such as demand for A&E services, ambulance call outs and unplanned hospital admissions. This is challenging during out of hours transition, particularly in relation to ensuring document sharing is managed well, ensuring patient safety and meeting expressed patient needs. Enabling the most compassionate care is an area of interest. This also includes the effectiveness and cost-effectiveness of different service models for addressing unscheduled urgent needs for people in their last year of life – including rapid response services, 24 hour palliative care helpline and hospice at home, amongst others.
3. Managing symptoms and care needs in end of life care
This includes risks and benefits of clinical approaches to end of life care, such as provision of oxygen; anticipatory prescribing/repurposing of drugs; and care after death, among others. This may also include use of technology to support the management of symptoms and pain levels (including, but not limited to, mobile devices and wearables, digital health technologies and telehealth/telemedicine to support remote clinical access and care delivery).
4. End of life care for infants, children and young people with life-limiting conditions
This includes end of life care planning, choice or preferred place of death, impact of timely perinatal palliative care, emotional and psychological support needs, managing breakthrough pain, and recognising that a child or young person may be dying.
5. Time and place of access to services
This includes identifying the key components of personalised care and support planning that link most closely to improved outcomes and experience, how these can be best delivered to improve person centred outcomes and service effectiveness, as well as delivering system-level benefits such as reductions in A&E attendances, ambulance call outs and unplanned hospital admissions and the cost implications of these. This area may include the use of technology for remote patient monitoring (including, but not limited to, telehealth, telemedicine and smart home technology) and how services can best be coordinated.
6. Planning and managing end of life care
This includes what factors help people with life-limiting conditions and their families or carers to decide where they would like end of life care to be provided and where they prefer to die. This also includes advanced planning support, for example treatments in advanced illness, especially resuscitation and treatment continuation; communication (for instance about prognosis and the impact of such conversations on treatment decision making; patient and health professionals; consideration of culture and faith etc.) and which existing models are most effective/cost-effective.
7. Bereavement support
Including impacts on wellbeing for patients, families and carers before and after death, care after death service delivery and how current and future demand for bereavement support can be met. This may also include digital legacy.
8. Reducing health inequalities in relation to end of life care
For example: age; gender; ethnic minority groups; different faiths; LGBTQ+ people; people with learning disabilities and/or mental health conditions; Gypsy and traveller groups; people in prison; homeless people and rough sleepers and people living in deprivation and poverty. This also includes reducing inequalities in access and provision of services for patients regardless of condition, setting, geographical area and time of day. The opportunity for addressing wider inequalities in access to and experience of care arising from geographical coverage of services, developing compassionate communities and enabling/developing programmes or service models for self-care are also of interest.
- Applicants are encouraged to consider use of recently published guidance to reduce, handle and report missing data in palliative care trials (Marie Curie 2022).
- The NIHR Programmes involved in this call and links to their remit information:
- Proposals must be within the remit of at least one participating NIHR Programme. Applications that span the remit of 2 or more programmes should be submitted to the programme within whose remit the major part of the work lies. Ambitious applications consisting of more than 1 clearly linked work package as well as applications for individual studies will be welcomed.
- Applications from recipients of NIHR Palliative and End of Life Care research partnership funding should make reference to this in their application form and ideally include their final summary report as an upload.
- Applicants should justify the importance of their proposed research and its potential impact on patient care. They should clearly state how their proposed research addresses an explicit evidence gap and how the research adds value to the existing NIHR research portfolio.
- Applications are encouraged which include recruitment from geographic populations with high care activity which have been historically underserved by research activity in this field.
- Applications should be co-produced, demonstrating an equal partnership with service commissioners, providers and service users (or their advocates) in order to provide evidence and actionable findings of immediate utility to decision-makers and service users. Applicants may wish to consult the NIHR Learning for Involvement guidance on co-producing a research project.
- The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion (EDI). All NIHR applications need to demonstrate they have met the requirements of the Equality Act (2010) by embedding EDI throughout the research proposal, ensuring there is no discrimination across the following domains; age; disability; race, including colour, nationality, ethnic or national origin; religion or belief; sex; sexual orientation; gender reassignment; being married or in a civil partnership; being pregnant or on maternity leave.
- This call represents an ongoing area of interest for the NIHR and, following this opportunity, the NIHR research programmes would still be interested in receiving applications in this area to their researcher-led workstreams.
Applicants who require further guidance may wish to send a short summary (maximum 1 A4 page) of their research proposal, in a structured format including rationale, research question, proposed methodology and outcome/evaluation methods to the following address:
- EME - email@example.com
- HSDR - firstname.lastname@example.org
- HTA - email@example.com
- PHR - firstname.lastname@example.org