Exploring death and dying in the UK: patient, family and public perspectives (EDDUK)

The study will explore public, patient and family perspectives and experiences of death and dying in different care settings and conditions within the UK, and establish concerns and priorities for end of life care.

The UK population is becoming older. Most people die in great old age, often after a period when they are affected by one or more chronic conditions, such as diabetes, cancer or heart failure. Current care for patients approaching the end of life has not caught up with this changing population profile. We know very little about what members of the public think about death and dying, their experience of giving and receiving care within their family, or how they themselves would wish to be cared for in future.

For example, we want to find out:

• if people think that death and dying are 'taboo' subjects and whether it helps to talk about these issues and plan for future care
• what concerns people most about the prospect of dying
• where people would like to be cared for, if this is different from where they would prefer to die

what people think about balancing quality of life and length of life. 

The knowledge gained from this study will help policy makers and healthcare professionals to develop end of life care services which are better tailored to the needs of patients from all sectors of society.

We collected data on experiences of death and dying in the UK from 3 sources:

1) Interviews with 34 people who had been bereaved

2) Interviews with 12 patients who are aware they have a terminal illness

3) Discussion groups with members of the public. Seven discussion groups met for 4 sessions with 38 participants in total. In addition, 5 individual interviews were carried out with people who wanted to take part in a group but were unable to attend.

Pollock, K., Caswell, G., Turner, N., & Wilson, E. (2023), The ideal and the real: Patient and bereaved family caregiver perspectives on the significance of place of death. Death Studies, 1-14.

Caswell, G., Wilson, E, Turner, N and Pollock, K. (2022), 'It's Not Like in the Films': Bereaved People's Experiences of the Deathbed Vigil. OMEGA - Journal of Death and Dying.

Wilson, E, Caswell, G, Turner N & Pollock, K (2022), Talking about death and dying: Findings from deliberative discussion groups with members of the public. Mortality.