Dying in hospital: Care of people with dementia and their carers

Lead Investigator: Dr Kristian Pollock
Co-investigator: Dr Davina Porock 
Institution: University of Nottingham
Grant type: Project
Amount: £125,195
Start date: June 2010
Completion date: May 2013

Scientific Title: Dying in hospital: Care of the person with dementia and family caregivers.

What was the project, and what did the researchers do?

The quality of hospital care, particularly for vulnerable groups including frail older people and those who are dying, has become a cause of great concern. This has intensified during the time in which this study has been carried out.

The research evidence about quality of end of life care in hospital, particularly in relation to dementia, has been limited. However, several studies have reported that older patients with dementia experience worse outcomes following hospitalisation, and receive different, possibly poorer, end of life care, particularly in relation to inadequate pain relief.

This study was designed to explore end of life care for frail older people, with and without dementia, in the acute hospital setting, and whether there were any differences in end of life care for these two groups of people. It focused on the ways in which medical and nursing staff came to recognise that someone was dying, how this was communicated between staff and with relatives, family carers' experiences of the hospital care of their dying relative, and the environment of the acute hospital ward as a place of death.

This qualitative study was based on extensive ward observation, interviews with ward staff and bereaved family carers, analysis of deceased patients' medical records and the compilation of patient case studies, for four wards in one hospital.

What were the key results, and how will this help in the fight against dementia?

The study found that care could be either good or bad, and a variation was seen across all of the wards studied. However, the quality of care given to people with dementia who were dying compared to those without was no different.

Care for patients who were dying did that did not meet expectations was often due to staff carrying out task-focused rather than person-centred care, possibly as a result of a target driven culture.

This shows that the hospital can be a good place of death, but that considerable changes - and resources – are required to make this routine, rather than unusual. As the population ages, hospital deaths are expected to increase, rather than diminish. Rather than being vilified, the hospital should be adequately resourced to provide sensitive, compassionate care to dying patients and their families.

This calls for substantial changes in the physical environment, organisation and delivery of care, and in staff understanding of their role in supporting and communicating with patients and their family carers. In presenting a detailed account of care of dying patients on acute hospital wards, the study findings will make a substantial contribution to the evidence underpinning the need for change.

  • Study findings relating to the Liverpool Care Pathway were submitted as evidence to the Independent Review commissioned by the Department of Health, which reported in July 2013.

The researchers have produced some Research Learning Outcomes (RLOs) that are freely available on the internet. Anyone can access them, but they are particularly aimed at medical and nursing students, and to support the continuing professional development of post registration nursing staff and other health professionals. These are:

What happened next? Future work and additional grants

Two e-learning resources (RLOs) are being produced: 'Hospital as a place of death' and 'Every death is different'. These have been developed in collaboration with the University of Nottingham's Health E-Learning and Media Team (HELM), an established centred of excellence for technology enhanced learning in health. The RLOs will be freely available on the internet for everyone to use. However, they are aimed particularly at medical and nursing students and to support the continuing professional development of post registration nursing staff and other health professionals.

How were people told about the results? Conferences and publications

Conferences:

'Dying in hospital: the significance of place', British Sociological Association Medical Sociology Conference, York. Oral presentation. September 2013.

'The hospital as a place of death', Alzheimer's Society Research Conference, Croydon. Poster presentation. June 2013

'The hospital as a place of death', European Association of Palliative Care Conference, Prague. Oral presentation. May 2013

'Caring for frail or seriously ill older people on acute hospital wards', Alzheimer's Society Research Conference, Leeds. Poster presentation, October 2012.

'A qualitative exploration of dying with dementia in the acute hospital setting', British Sociological Association Medical Sociology Conference, Leicester. Oral presentation, September 2012.

'Dying in Hospital. Care of the person with dementia and family caregivers. A consideration of (some) ethical issues'. Association of Regional Ethics Committees (AREC), London. Oral presentation, May 2012.

'Dying with dementia in the acute hospital setting', British Sociological Association Medical Sociology Conference, Chester. Oral presentation, September 2011.

'Caring for frail or seriously ill older people on acute hospital wards: case study', Alzheimer's Society Research Conference, Birmingham. Poster presentation, September 2011.

'Caring for frail or seriously ill older people on acute hospital wards', British Sociological Association Annual Conference, London. Oral presentation, April 2011.

'Caring for frail or seriously ill older people on acute hospital wards' DeNDRoN/NIHR Research Networking Meeting, London. Oral presentation, October, 2010.

'Caring for frail older people on acute hospital wards', Alzheimer's Society Research Conference, Warwick. Poster presentation, September, 2010.