FAQs

Q: Who can take part in the survey

• People who are living with a serious life-limiting illness who may or may not be receiving palliative care or end of life care (including, but not limited to cancer, organ failure such as heart, liver or kidney failure, dementia, Parkinson’s, chronic obstructive pulmonary disease (COPD) or Motor Neurone Disease)
• People who are caring for a loved one or someone you know who has a serious life-limiting illness
• Bereaved carers or family members, whose loved one(s) died following a serious life limiting illness
• Health, social care or other professionals supporting people with serious life-limiting illnesses
• Volunteers supporting people with serious life-limiting illnesses (for example as member or a local community, hospice volunteers or befrienders)
• Members of the public with an interest in palliative and end of life care

You can find out more about the survey and complete it here.

Q: What does palliative care mean?

A: Palliative care offers physical, emotional and practical support to people with a serious life-limiting illness who may be approaching the end of life. It can be offered at any point after a serious life-limiting diagnosis is received. Palliative care aims to make sure people feel supported and comfortable, rather than cure an illness. It is based on a comprehensive and person-centred approach, addressing physical, psychological, social and spiritual suffering. Palliative care can also support people close to someone with a serious life-limiting illness, which can continue into bereavement.

End of life care is for people who are thought to be in the last year of life. This timeframe can be difficult to predict, so some people might only receive end of life care in their last weeks or days. And others may have end of life care for longer.

Q: Why we need your help

A: We are doing this project to make sure that future research about palliative and end of life care addresses issues or problems that are important to people with a serious, life-limiting illness, families and those that support them.

A similar project was published in 2015, which create a list of priorities for research in this topic. Much has changed since 2015; research on some of the priorities identified has been undertaken and we have all been affected by the Covid-19 pandemic, in different ways. You can find out more about the previous project here.

We feel it is now time to check in again with people to ask what they think future research about palliative and end of life care should focus on.

Q: Why is this project needed?

Palliative and end of life care is an under-researched area which requires greater attention and focus. Currently, one in four people in the UK dies without the care and support they need at the end of life and by 2048 the number of people with palliative care needs in the UK will climb by more than 147,000 to over 730,000. Yet only a tiny 0.21% of the £2.56 billion spent on healthcare research projects in the UK in 2018 was on end of life research.

Given these limited resources, it is particularly important that palliative and end of life care researchers and research funders strive to answer the questions that are most important to everyone affected by dying, death and bereavement.

Q: Who is involved in the partnership?

A: Details of who is involved in the partnership can be found here

Q: How can organisations and the public find out more?

A: For more information, please email us at PeolcPSP@mariecurie.org.uk

Q: How did the project come about?

A: The project was initiated by Marie Curie, who approached other potential partners. The James Lind Alliance is an organisation that facilitates priority setting for research questions, and will help to facilitate the project.

Q: What do you hope to achieve?

A: We hope that the results of the project will shape the palliative and end of life care research agenda and act as a catalyst for more funding opportunities for research in this area.

Q: What will happen to the “top 10” questions?

The information gathered in this project will provide crucial insight into what areas of palliative and end of life care are most important to people affected by dying, death and bereavement, whether in a personal or professional capacity.

We will work with the Steering Group to raise awareness of the “top 10” questions to highlight the need for funding in those areas. We will also create a longer list of priorities, to include other issues of importance, beyond the top 10.

The results of this project will help us, and hopefully other funders, to prioritise the work that we undertake to ensure that our efforts to improve end of life experiences for all have the biggest potential for impact.