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Research at the Marie Curie Palliative Care Research Centre at Cardiff University School of Medicine highlights the urgent need for better care for dying people and more support for the relatives and professionals who look after them.

A survey of over 1,400 carers, including family members, friends, and healthcare workers reveals that the main areas of frustration are difficulties in access to care and treatment (particularly out of working hours), poor coordination between health and social services, and a general lack of communication and understanding around death and dying.

The aim of the survey, which was carried out by the Palliative and end of life carePriority Setting Partnership (PeolcPSP) with the James Lind Alliance (JLA), was to identify questions for health-related research. However, analysis of the data revealed that many of the responses related to personal experience, anecdotes and questions rather than clinical research.  

A newly published report, funded by the Economic and Social Research Council (ESRC), was subsequently commissioned to analyse the survey data in more detail. 

Common concerns of respondents include:

• deciding on the best place for a relative to die
  eg "If you live in the middle of the countryside deciding to die at home means you die unsupported, in fear and pain."
• a lack of out-of-hours support
  eg "Why does support stop on Fridays?"
• the taboos surrounding death
  eg "What happens at the end? I don’t know how to die!"
• finding information about treatment options, understanding symptoms such as pain and agitation, nutrition, and the use of medication such as morphine
  eg "Does excessive morphine dosing hasten death?" 
• access to routine or specialist services, therapies and equipment to enable better care at home
  eg "Why are things so slow? We found services and equipment arrived late…"
• the needs of patients with dementia and other non-cancer terminal conditions such as motor neurone disease or multiple sclerosis
  eg "I am dying of liver disease. The palliative care nurses just want to chat but I need someone with practical solutions to the problems I am facing." 
• poor coordination between health and social care services and bad communication between families and health and social care professionals
  eg "It was bad enough watching my beloved husband die, but insult was added to that by being made to feel that our wishes were not being listened to…"
• the lack of financial support and benefit packages which include home care
  eg "I can take some carer’s leave one week a year, but I know that will not be enough. Part time work would mean a pay cut, it’s a worry."
• the emotional needs of people caring for loved ones at home and the lack of support for bereaved relatives.
  eg "My husband was my full time job. The day he died all support stopped… I felt lost and abandoned."
• the language of terminal care
  eg "What is a hospice, surely it’s not just for the last few days of my life?"

Dr Annmarie Nelson, Scientific Director, Marie Curie Palliative Care Research Centre, who led the research, commented: "These findings confirm the results of a recent report commissioned by the charity Marie Curie, which found that more than 110,000 people affected by terminal illness in the UK are missing out on the care and support they need each year. Seven out of 10 carers say that people with a terminal illness don't get all the care and support they need and only 15 per cent of health and social care professionals think that people with a terminal illness have their care needs adequately met by emergency services.

"Recent reports confirm that palliative and end of life care is still an under-resourced and under-researched specialty. Funding for research at the end of life in recent years is below 0.16 per cent of the total spent on health research in the UK."

Further information

• Dr Annmarie Nelson
  Scientific Director, Marie Curie Palliative Care Research Centre
  Email: nelsona9@cardiff.ac.uk
• Ashley-Amaran Balachandran
  Senior Media and PR Officer, Marie Curie
  Email: ash.b@mariecurie.org.uk
  Telephone: 020 7091 6650

Notes for editors

1. This release is based on the research findings of the report Beyond the questions: Shared experiences of palliative and end of life care (PDF), a thematic analysis of the first survey of the Palliative and End of Life Care Priority Setting Partnership (PeolcPSP) funded by the Economic and Social Research Council, and conducted by Dr Annmarie Nelson, Scientific Director, Marie Curie Palliative Care Research Centre, Cardiff University School of Medicine.
2. The PeolcPSP was initiated and led by Marie Curie and funded by nine further organisations, including the ESRC
3. The Economic and Social Research Council (ESRC) funds research into the big social and economic questions facing us today. We also develop and train the UK’s future social scientists. Our research informs public policies and helps make businesses, voluntary bodies and other organisations more effective. Most importantly, it makes a real difference to all our lives. The ESRC is an independent organisation, established by Royal Charter in 1965, and funded mainly by the Government. In 2015 the ESRC celebrated its 50th anniversary.
4. An analysis of the two free text boxes of the full data set (1,403 responses) was undertaken. The texts were coded in full and analysed by themes and sub themes under the headings of communication, managing symptoms and medications, perceptions of palliative care, service use, support and understanding dying.