10 most important unanswered questions in palliative care
For the past 18 months, the Palliative and end of life care Priority Setting Partnership has been asking you – patients, carers and health and social care professionals – to tell us your most important unanswered questions for research to address. Thank you to everyone who contributed.
Today we have launched a report revealing the top 10 most important unanswered questions in palliative and end of life care.
In order of priority, they 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 health care 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 COPD, heart failure, 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 co-ordination 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?
What happens next?
Palliative and end of life care is an under-researched area. There are many unanswered questions to be addressed, yet resources are limited.
It is crucial for research funders to understand what is most important to individuals and families, and the professionals who work with them to improve care at the end of life. Now that we know what questions are most important, we can ensure future research brings the greatest possible benefit to people at the end of their life, as well as their carers and families.
As with other areas of research, much of the research agenda in adult palliative and end of life care has been determined by researchers and research funders, which is why we were keen to engage patients, carers and healthcare professionals whose voices are not often heard.
Marie Curie will use these questions to guide which research themes we fund, as will other partners. Researchers will use these questions to guide their research proposals. And we hope that the interest in this project will help to increase the amount of money invested into palliative and end of life care research, ultimately benefiting people at the end of life, and their carers and families.
If you're a healthcare professional and you don't specialist in palliative care, you can find expert information, knowledge and support to help you deliver the best possible care for people living with a terminal illness on our Palliative Care Knowledge Zone.