Putting patients, carers and clinicians at the heart of palliative and end of life care research

by Dr Sabine Best
Head of Research


A ground breaking partnership has been launched to find out what palliative and end of life care research is important to people who are likely to be within the last years of life, their families, and the professionals who work with them.

Initiated by Marie Curie Cancer Care, a large number of organisations have come together to form “the Palliative and end of life care Priority Setting Partnership” (PeolcPSP) with the James Lind Alliance. This means that for the first time, people directly affected will get the chance to have their say in setting research priorities for palliative and end of life care. We are particularly seeking to hear from people who are likely to be in the last years of life, current and bereaved carers and families, and frontline social and healthcare professionals.

Palliative and end of life care is an under-researched area and requires greater attention and focus.  The aim of the partnership is to ensure that future research brings the greatest possible benefit to people at the end of life, and their carers and families, by identifying what questions are of the greatest importance to them.

Co-funding partners are:

The Partnership is also supported by Macmillan Cancer Support, the Economic and Social Research Council, the Medical Research Council and Cancer Research UK.

In addition, there are several other organisations represented on the Steering Group, which will oversee the partnership: Association for Palliative Medicine of Great Britain and Ireland, Help the Hospices, National Bereavement Alliance and Childhood Bereavement Network, National Cancer Research Institute (NCRI), Consumer Hub, National Council for Palliative Care, Royal College of Nursing, Scottish Partnership for Palliative Care and St Christopher’s Hospice.

To date, over 20 organisations – who can reach people with palliative and end of life care needs, life-limiting illnesses, families, carers, doctors, nurses and social care professionals – have pledged their support.

We will soon be launching a joint website for the project and a survey to reach as many people as possible.

For more information or to get involved, email us at PeolcPSP@mariecurie.org.uk or telephone us on 020 7091 4153.

What does palliative care mean?

Palliative care helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It includes management of pain and other symptoms and provision of psychological, emotional, social, spiritual and practical support. A personal care plan is an important part of palliative care and people have the right to determine where they wish to receive care and where they wish to die.

Palliative care is about supporting everyone involved in a person’s life, such as family, friends and carers.

Support can be provided as and when required over a long period of time, or more intensively as someone approaches the last weeks, days and hours of their lives. Palliative care offers a support system to help the family cope during the person’s illness and in their own bereavement.