Earlier this year, a group from the UCL Research Department of Primary Care and Population Health published a review examining quality of end-of-life care in dementia, specifically from the point of view of family carers (Davies et al, 2014).
Many will know, through personal or professional encounters, of the stress and burden that caring for a relative with dementia can bring. As the authors point out, research involving carers of people with dementia has so far concentrated on the diagnosis and transition stages of the condition, but this review set out to address a clearly focussed question, to be answered by a specific group of people:
What is quality end-of-life care for dementia?
This review looked at qualitative evidence, which means descriptive information is used rather than facts and figures. Key words and headings were used to search databases and ‘grey literature’ (documents or reports that have not been commercially published (The New York Academy of Medicine, 2014)), with a narrative synthesis presented via a thematic analysis (i.e. teasing out evidence using words, rather than statistics, to summarise findings then identifying recurrent themes/concepts (Popay et al, 2006)).
Studies were included if they focussed on both dementia and end-of-life care or palliative care, they reported perspectives of family carers on quality, they were in English and published in 1990 or later. Quantitative studies and those not peer reviewed were excluded. Only eight studies met these criteria.
Four main themes were identified:
1. A family’s belief of death and their choice of treatment
- Views spanned a spectrum of acceptance of death, from full acknowledgment to complete denial
- Wide variation about their perception of good quality end-of-life care, ranging from active and invasive treatments to more palliative approaches
- One of the included studies focussed on the differences between rural and urban families, with many of the rural respondents being more accepting of death and preferring less invasive treatments than their urban counterparts
2. The relationship with professionals as a core component of care quality
- Carers felt it important to have contact with professionals, although there were differences in opinion as to how often this was needed and the purpose this contact would serve
- Time spent getting to know the person enabled trust to be built
3. Emotional and commitment pressures of caring
- Adult children found being a family carer particularly demanding
4. Family carers’ ability to think about death and dying
- Many carers were not able to think about the death and dying process of their relative
- Some professionals themselves were perceived to be reluctant to discuss end-of-life care
- Looking at such a specific question from this perspective was bound to identify little in the way of existing evidence. The authors’ search was comprehensive and, although they excluded non-English language papers, they did check that they didn’t exclude any key articles on this basis. They commented that ‘relevant experts in the field were contacted to identify any additional relevant papers’, but did not indicate if this yielded any more studies. Although it is impossible to know without further details, there may have been some knowledge to be gained from the 26 papers that were excluded on the basis of them being quantitative studies.
- There was a high degree of variability between studies. 3 of the 8 studies reported views from other people in addition to the family carer (1 from those with dementia and 2 from professionals). The aims and the settings of the included studies were different: those carers with relatives in nursing homes may give different opinions (and may have given more thought to end-of-life care) than those recruited from outpatient memory clinics. Quality appraisal showed a ‘range of quality among the studies’, with poor description of methodology and type of analysis in some papers, although result of appraisal was not used as an exclusion criteria.
- In two of the studies, both current and bereaved family carers’ views were reported and I would like to have known the difference in opinions, if any, between those family carers who are still in the process of caring for their relative and those carers who have been bereaved and had time to reflect on their experiences.
- As the authors themselves have acknowledged, secondary thematic analysis makes the results ‘a step removed’ from family carers, although the use of direct quotes makes the review feel very close to the source of information.
The authors aimed to explore the perceptions of family carers of quality end-of-life care for dementia. In my opinion, many of the views expressed could be pertinent to anyone receiving end-of-life care, not just those with dementia; the key difference being those with dementia may be less likely to be able to express their own views during the dying process, placing extra responsibility with families.
The 2013 review of the controversial Liverpool Care Pathway (Neuberger, 2013), a care plan for dying people, recommended that the pathway be phased out, leaving some with concerns over a lack of guidance. However, the authors identify that the European Association for Palliative Care has developed recommendations specific to end-of-life care in dementia (Van der Steen et al, 2014).
The bottom line is, despite gathering evidence from several studies, there is no consensus from family carers as to what good quality end-of-life care for someone with dementia entails. The wide range of views from carers reflects exactly what I have seen in clinical practice: there is no ‘right answer’. Care should be planned to be suitable for the needs and wishes of the individual patient and their families and future efforts directed towards more research in this area.
Davies N, Maio L, Rait G, Iliffe S. Quality end-of-life care for dementia: what have family carers told us so far? A narrative synthesis. Palliative Medicine. 2014;28(7): 919–930. [PubMed abstract] [Presentation by the authors PDF]
The New York Academy of Medicine. What is grey literature? http://www.greylit.org/about (accessed 5th June 2014).
Popay J, et al. Guidance on the conduct of narrative synthesis in systematic reviews: a product from the ESRC methods programme (PDF on ResearchGate). Institute for Health Research, University of Lancaster: 2006.
Neuberger J. More care, less pathway: a review of the Liverpool care pathway (PDF). London: Department of Health; 2013.
Van der Steen J, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine. 2014;28(3): 197-209.