We welcome research proposals for end of life care in any ... Improving the outcomes and quality of care for patients, a
18/84 End of Life Care
Summary A call for applied health research studies 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. The scope for research includes the impact on patients, families, carers, workforce, as well as an evaluation of the burden on and uncertainties within the health and social care system. We welcome research proposals for end of life care in any disease, service or setting, including hospitals, specialist centres and services, community services and care homes. For the purposes of this call ‘end of life care’ involves identifying and caring for “people who are likely to die within 12 months”, including those with advanced, progressive, incurable conditions and people with life-threatening acute conditions that are expected to result in early death. It 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. Given the scope of this call, we would welcome applications that span the remit of one or more of the participating research programmes (EME, HTA, HS&DR and PHR) and which comprise of co-ordinated teams of investigators spanning different specialties/disciplines and geographical centres. Deadline for proposals: There will be two deadlines for stage 1 applications. The first call will close on 6th November 2018 at 1pm. The second call will open on 7th November 2018 and close on 19th March 2019 at 1pm. Please note that if you have started to complete your application form, and do not submit to the 6th November deadline, you will need to start a new application if you wish to submit to the 19th March For support developing applications, applicants are also encouraged to contact their local NIHR Research Design Service (RDS) or equivalent in the first instance. Supporting Information In England, approximately half a million people die each year and approximately three quarters of these deaths are expected. Our ageing UK population means the burden on the NHS and other care settings will continue to grow alongside the increasing complex needs of patients. Two NIHR themed reviews highlighted that there are challenges in delivering end of life care services. 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 where they want to be.
Organisations, patients, carers and families face difficult daily choices, with many uncertainties, as progression of any given disease, and the complex needs of individuals are difficult to predict and respond to. These difficulties and complex needs put a significant burden on the NHS from community nurses to high cost hospital /residential care. A Nuffield Trust report on the cost of care at the end of life shows that acute hospital (largely unplanned) admissions represent 70% of health care costs in the last three month of life. Estimates suggest that we spend about £55m each day on palliative care. 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’ highlighted the importance of further research in end of life care. In July 2016, the Government’s ‘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 in the ‘Ambitions for Palliative and End of Life Care’. 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. 1. Workforce and skills issues in end of life care Workforce issues including both home/community and hospital care. Future proofing of the health and social care workforce remains an important issue e.g. 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. 2. Referral / transition across health and social care services, particularly continuity of care This includes transition within any care services. Patients in 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. 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 helpline, hospice at home, etc. 3. Managing symptoms and care needs in end of life care Fluid retention, managing patient agitation and delirium, anticipatory prescribing / repurposing of drugs; and care after death. The use of technology to support the management of symptoms and pain levels. 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 as well as how these can be best delivered to improve person centred outcomes and service effectiveness. This area may include the use of technology for remote patient monitoring. 6. Bereavement support Including impacts on wellbeing for patients, families and carers and care after death service delivery. 7. Reducing health inequalities in end of life care This includes provision of services, particularly for specific vulnerable groups for example people with learning difficulties, mental health conditions and provision for homeless people in need of end of life care. The opportunity for developing compassionate communities and enabling /developing programmes or service models for self-care are also of interest. How to apply & supporting information: The NIHR Programmes involved in this call are: • • • •
Efficacy and Mechanism Evaluation (EME) Health Services and Delivery Research (HS&DR) Health Technology Assessment (HTA) Public Health Research programme (PHR)
Applicants should note that: •
Proposals must be within the remit of at least one participating NIHR Programme. However, we expect to receive applications that span the remit of one or more programme. In these cases, the application should be submitted to the Programme within whose remit the major part of the work lies.
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Ambitious applications consisting of more than one clearly linked work package as well as applications for individual studies will be welcomed. We would also encourage the building of research capacity through the research process.
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Patient and public involvement should be included within the application and study design.
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Applicants should clearly state how their proposed research addresses an explicit evidence gap and how the research adds value to the existing NIHR research portfolio
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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.
Contact information 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:
[email protected] 