Better ‘out of hours’ care and support for terminally ill rated top research priority
Press release published
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Identifying the best ways of providing care and support to terminally ill people, their families and carers outside of ‘working hours’ has been rated the top priority for the future of palliative and end of life care research, according to a new report launched today. The results from an extensive 18-month public consultation were revealed at the Palliative and End of Life Care Research Summit, hosted by Public Health England’s National End of Life Care Intelligence Network, and, NHS England. Over 1400 people in the last years of life, current and former carers, and health and social care professionals participated in the Palliative and end of life care Priority Setting Partnership, initiated by Marie Curie and independently overseen by the James Lind Alliance, a non-profit making initiative, hosted by the National Institute for Health Research, to determine the most important unanswered questions (i.e. gaps in existing evidence) that could improve overall care and experiences. Top of the list, narrowed down from a ‘long list’ of 83 questions, was identifying the best ways of providing care outside of working hours to avoid crises and help patients to stay in their place of choice. This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families. This was followed in second place by questioning how access to palliative care services can be improved for everyone regardless of where they are in the UK, and what are the benefits of Advance Care Planning? – in third place. Also outlined in the top ten research priorities are what information and training do carers and families need to provide the best care for their loved one who is dying, including training on giving medicines at home; delivering the right care for patients with non-cancer diseases; ensuring all staff are adequately trained, no matter where the care is being delivered; continuity of care for patients at the end of life; and assessing and treating pain and discomfort in people at the end of life with communication and/or cognitive difficulties, such as dementia, motor neurone disease (MND) and Parkinson’s disease. Dr Bill Noble, Medical Director at Marie Curie, said: “Patients and carers have never before been consulted in such a comprehensive and systematic way about their priorities. We are grateful to them and front-line professionals for the openness with which they shared their views and experiences. “With so little resource going into this area of research, we hope that the results of this ground-breaking work will help focus researchers and funding bodies on the questions about palliative and end of life care that concerns patients, carers and clinicians the most, as well as demonstrates the need for increased funding in this under-researched area.” Joanna Eley, Patient Representative, National Cancer Research Institute (NCRI) Consumer Hub, said: “We know that the findings of this considered research project, to which so many have contributed, will be welcomed by patients in the last stages of life and their carers. The end of life is something that concerns absolutely everyone and will never go away. “We hope that the clear and simple presentation of the results of this work will help give this field the attention it needs and deserves. All researchers and funders need to read this report.” Professor Julia Verne, lead for end of life care at Public Health England welcomed the priorities identified by the Palliative and end of life care Priority Setting Partnership and said: “It is important to hear directly from the people affected about what matters most to them and this will help us to prioritise our future research. I am delighted that these priorities will be launched at Public Health England and NHS England’s Palliative and End of Life Care Research Summit where researchers, research funders and the public will come together to make sure that we undertake research that really makes a difference to people in the final phase of life and their carers.” View the Palliative and end of life care Priority Setting Partnership final report -Ends- |
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Updated
Notes to editor
Interviews with patient representatives, carers and health and social care professionals who participated are available on request.
Backgrounder
Partnership and Methodology
The Palliative and end of life care Priority Setting Partnership (PeolcPSP) was initiated by Marie Curie in summer 2013 and involved around 30 other organisations and groups. The partnership (and methodology) was facilitated by the James Lind Alliance (JLA) and overseen by a Steering Group chaired by an independent JLA Advisor.
1403 participants from across the UK submitted their unanswered questions about palliative and end of life care. Then we assessed whether any of the questions had already been answered by an up-to-date systematic review of existing research evidence.
From this, we narrowed down to a ‘long list’ of 83 unique questions and 1331 online participants ranked each question in order of priority. The Steering Group – which also included patient representatives and carers – produced a ‘shortlist’ of 28 questions and then agreed a final top 10.
Public Health England and NHS England are hosting a research summit on 15 January, bringing together researchers, funders and public to consider the research underway in England, the research priorities identified by the Palliative and end of life care Priority Setting Partnership and how agencies can best work together to improve palliative and end of life care.
Conclusions
The following research questions or evidence uncertainties were identified and prioritised by patients, carers and health and social care professionals to inform the future of palliative and end of life care research.
The Top 10 unanswered questions in palliative and end of life care in order of priority are:
- What are the best ways of providing palliative care outside of working hours to avoid crises and help patients to stay in their place of choice? This includes symptom management, counselling and advice, GP visits and 24-hour support, for patients, carers and families.
- How can access to palliative care services be improved for everyone regardless of where they are in the UK?
- What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when?
- What information and training do carers and families need to provide the best care for their loved one who is dying, including training for giving medicines at home?
- How can it be ensured that staff, including healthcare assistants, are adequately trained to deliver palliative care, no matter where the care is being delivered? Does increasing the number of staff increase the quality of care provided in all settings? To what extent does funding affect these issues?
- What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases (such as chronic obstructive pulmonary disease (COPD), heart failure, motor neurone disease (MND), AIDS, multiple sclerosis, Crohn’s disease, Parkinson’s disease, dementia, and stroke)?
- What are the core palliative care services that should be provided no matter what the patients’ diagnoses are?
- What are the benefits, and best ways, of providing care in the patient’s home and how can home care be maintained as long as possible? Does good coordination of services affect this?
- What are the best ways to make sure there is continuity for patients at the end of life, in terms of the staff that they have contact with, and does this improve quality of palliative care? Would having a designated case coordinator improve
this process? - What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example?
Next steps
For research funders
Funding for palliative and end of life care research is limited. The findings of the PeolcPSP will enable existing funders of research – including many of the project partners – to target their funds to the priorities that matter most to patients, current and bereaved carers, and health and social care professionals. Research funders will also be able to coordinate their efforts and tackle the highest priority questions together.
For researchers
The results will enable researchers who are applying for funding on these topics to demonstrate that their research will be valuable to the people who most need it. All of the longlisted questions will be made publicly available via the UK Database of Uncertainties about the Effects of Treatments (UK DUETs), which publishes treatment uncertainties from patients, carers, clinicians, and from research recommendations, covering a wide variety of health problems.
For charities
Charitable funders and their policy teams will be able to use this project to demonstrate the need for increased funding in palliative and end of life care, and campaign to achieve this. We hope that there will be increased awareness and interest in funding and conducting research in palliative and end of life care as a direct result of the PeolcPSP.
For the PeolcPSP
The original survey returned over 1,400 responses, many of which included comments and questions that did not fit with the JLA methodology of identifying and prioritising interventional research questions. The PeolcPSP is looking at ways to further analyse these out-of-scope data to highlight questions and comments that could be addressed by other types of research, e.g. qualitative research.
About Marie Curie
Marie Curie is the leading charity providing care to people with any terminal illness in their own homes or in one of its nine hospices. The charity is also a leader in research into the best ways of caring for people with a terminal illness. In addition to this the charity designs and advises on end of life services and works to ensure that the best possible care and patient choice is at the heart of commissioning end of life care across the UK. All Marie Curie services are completely free of charge. Around 70% of the charity’s income comes from donations with the balance of funds coming from the NHS.
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