How different diseases affect experiences of dying

This year’s Annual Marie Curie Research Conference on 27 March, held jointly with the Royal Society of Medicine, will focus on the future of palliative care.

Emma Carduff and Scott Murray

Dr Emma Carduff, Locum Research Lead at Marie Curie Hospice, Edinburgh and Professor Scott Murray, from the University of Edinburgh, will be speaking about how people with different diseases live and die differently.

What is your presentation about?

We are presenting the results of eight studies where we interviewed people who were dying of different illnesses, and their family carers. Six of these studies related to cancer (lung, glioma and colorectal) and organ failure (heart, chronic obstructive pulmonary disease and liver). Two studies focused on frail older people and a South Asian population. We wanted to understand if people with different illnesses had typical experiences and needs as their illnesses progressed.

How long did the research take?

The eight studies each lasted about two years and were conducted over twelve years.
Who did you talk to and how many people and what did you ask them?
We conducted 828 in-depth interviews with 156 people with a terminal illness, 114 family carers and 170 health professionals. We found that people with cancer could typically give a clear account of how their illness began, how they adapted and their anticipated end. In contrast, people with organ failure struggled to pinpoint when their illness began or to speak openly about dying. Frail older people tended to be frustrated by their progressive loss of independence, fearing dementia or nursing home admission more than dying.

What did you discover through your research?

Different patterns of illness in these three groups of people shaped their experiences, thoughts and fears. People dying of cancer, organ failure or frailty tended to have different experiences and concerns. People dying of cancer had much better access to palliative care and hospices.

What more do we need to learn?

We need to learn how best to provide care for people dying of illnesses such as heart failure, liver failure, dementia and frailty. Services for those with diseases other than cancer may have to be designed differently from typical hospice services in the UK. To provide tailored support for people at the end of life, we also need to understand how they can use their personal resources and coping mechanisms and consider what support exists in the wider community.

Visit the Marie Curie website for more information on the conference and to view the programme. Updates are available at #futurepall.