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 care Priority 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.”