How can psychologists shape the future of end of life care research?

I am proud to be working for Marie Curie, the largest charitable funder of palliative and end of life care research in the UK. Through our caring services, our information and support and our policy and research work, our mission is to make sure everyone gets the care and support they need and to close the gap in end-of-life care.  

I completed my professional qualification in health psychology in 2014, but it wasn't until almost the end of my training that I considered palliative care as a field to explore, and the role that psychologists could play in it…

How I got involved in palliative care  

My interest in the sector began during a placement that I undertook during my health psychology training, at a centre that provides complementary therapies to people receiving cancer treatments and their families. Whilst supporting the delivery of a feasibility trial exploring the potential benefits of acupuncture on pain and anxiety for people living with cancer, I got to know some of the people working at the clinic and the people accessing the services. I heard about the realities of living with cancer, and of supporting a loved one with cancer. This made me consider the possibilities for psychology in both supporting people with life-limiting illnesses, and also for research to improve experiences towards the end of life.  

After completing my training in health psychology, I held a post-doctoral research position at the Marie Curie Palliative Care Research Department within the division of psychiatry at University College London. I worked on a range of research projects, including exploring the barriers that children and young people with life limiting illnesses and their families might face in getting involved in palliative and end of life care research, and exploring the barriers to palliative care access for people with lived experience of homelessness. These very different areas of research within that same field gave me some insights into the range of challenges and opportunities for psychologists within the sector.  

A person-centred approach

Palliative care and end of life care offers physical, emotional and practical support to people with a serious life-limiting illness who may be approaching the end of life. It's not about curing an illness – it aims to make sure people feel supported and comfortable, while encompassing support for friends and family members, both during their loved one's illness and into bereavement. Palliative care takes a person-centred approach to address physical, psychological, social and spiritual suffering.  

My role at Marie Curie sits within the policy and research team. I lead a team of researchers to design and carry out pieces of research in collaboration with a range of professional and lived experiences to understand and improve experiences towards the end of life. Our work focuses on four key thematic areas: 

• Providing quality care and support for the mental and physical health and wellbeing of people affected by dying, death and bereavement.  
• Ending financial insecurity at end of life, and ensuring everyone has the support they need to address their practical concerns.  
• Ensuring everyone affected by death and dying – including the family, friends and carers of the dying person – are supported through and beyond the end of life.  
• Ending inequity in end of life experience by ensuring access to excellent standards of care and support for all.   

You can see from these areas that there are many opportunities for psychologists to be involved in palliative care, and psychological and emotional support are a fundamental part of the holistic care provided by palliative care teams. Being diagnosed with a life-limiting illness, or supporting someone with a serious illness, can be the cause of much anxiety and distress. Furthermore, high levels of emotional distress and burnout have been noted among staff working in palliative care settings (Dijxhoorn et al., 2020). However, the results of a survey published by Carole Paley and colleagues this year highlighted how many hospice healthcare professionals felt that their training and supervision in provision of psychological support was inadequate. 

Focusing on what's important to patients and families  

So given these issues and the fact that dying, death and bereavement will affect all of us, palliative and end of life care must receive a good chunk of research funding, right? Well, in fact, the UK Clinical Research Collaboration (UKCRC) Health Research Classification System (HRCS) 2018 dataset revealed that only 0.21 per cent of all non-commercial health-related project and programme research funding is spent on palliative and end of life care research (Crooks et al., 2023).

Because of this, it's essential that the research that is funded focuses on issues that are important to people living with serious life limiting illness and those close to them. In 2013 we established our Research Voices Group to make sure we can engage meaningfully with people who have personal experience of living with terminal illness, of caring for someone with a terminal illness, or of bereavement. And to make sure that a real range of voices are included in the prioritisation of future research, Marie Curie are working on a research project to hear from people with serious life limiting conditions, their families, friends, carers and health and social care professionals – including psychologists – about what they think future research in this field should focus on. 

The project is a refresh of some work carried out back in 2015 as part of the Palliative and end of life care Priority Setting Partnership (Peolc-PSP), which identified priorities for palliative and end of life care research to address.  The first part of this project is a survey which is open to people living with serious life limiting illness, those close to them and the health and social care professionals involved in their care. This short survey provides an opportunity to tell us your views about what you think future research in this field should focus on.

Another way that psychologists could get involved in palliative care is to join the Mental health and wellbeing in Advanced Illness Network (MAIN). MAIN is a free, online research and knowledge exchange network focused on mental health and wellbeing in relation to serious life-limiting illness. The network is supported by Marie Curie and co led by Dr Anne Finucane and Dr David Gillanders from the University of Edinburgh. 

Psychology, in all of its different forms, has much to bring to palliative and end of life care. Please help us to ensure the views, experience and expertise of psychologists are included within future palliative and end of life care research.  

References

Crooks, J.C.E., Hudson, B. et al. (2023). Addressing the palliative and end of life care research priorities: an updated grant mapping analysis. Health Open Res, 5:32.

Dijxhoorn, A.-F.Q., Brom, L., van der Linden, Y.M. et al. (2020). Prevalence of burnout in healthcare professionals providing palliative care and the effect of interventions to reduce symptoms: A systematic literature review. Palliative Medicine, 35(1), 6-26. 

Paley, C.A., Keshwala, V., Farfan Arango, M. et al. (2024). Evaluating provision of psychological assessment and support in palliative care: A national survey of hospices in England. Progress in Palliative Care, 32(1), 11-21.