Dying in the place of your choice – does the slipper of cancer fit on the foot of dementia?
Dr Natasha Wiggins MBBS BSc MSc is a palliative medicine consultant working in Oxford University NHS Foundation Trust. Her interest in psychiatry in palliative medicine led to the creation of this fascinating study day in Oxford currently accepting applications for registration. She tweets @polyhymniadays
What is the leading cause of death in the UK? Cancer? Heart disease? Nope, it is dementia. Much value has been placed on dying in the place of one’s wishes however those with dementia seem to have been excluded from this focus. Why is it so hard to research wishes around death in those with dementia? Is it because we still forget it is a terminal disease? (1) Does it adhere to the issues with advance care planning in that when one is well they don’t wish to talk about it but when they are unwell they can’t?
The Long Term Plan talks about the presence of Summary Care Records in which people can record their wishes for care. As mortality rates are set to remain at 100% (2) I interpret this to include wishes for end of life care. To many, the concept of records documenting a person’s wishes for care is not novel, indeed there are many around the UK under the umbrella Electronic Palliative Care Co-ordinating Systems (EPaCCS).
Coordinate my Care (CMC) is one such form of EPaCCS used in and around London. It is an online form completed by a patient with a health care professional and can be seen by primary care, acute hospitals, community teams and NHS 111 and 999 services. Information such as “I do not want to be admitted to hospital even if I have something considered to be reversible” or “do not attempt cardio-pulmonary resuscitation” flashes up on screen for the London Ambulance Service alongside details of key personal and professional contacts. Mandatory questions in the completion of this form include preferred place of death and then actual place of death when the person dies. Use of this routinely collected data has enabled analysis of the wishes and outcomes of people with dementia in a way that has previously felt elusive.
Over 1000 people with a diagnosis of dementia and a CMC record were analysed and the results suggest that we cannot apply the same approach to end of life care as we do those with a malignancy. In keeping with recent studies (3) it may not be a surprise to learn that just over half the people died in a nursing home. In contrast to popularly cited cancer-based research in which most wanted to die at home or in a hospice, this study found that 50% of people wanted to die in a care home environment and only 1.4% in a hospice. It is interesting to note that in this study having a primary diagnosis of cancer alongside a dementia diagnosis, reduced one’s chances of dying in their preferred place. There were multiple factors that increased the chance of dying in the preferred place, some, like having a poor performance status were not modifiable. Others, like being not for CPR, having a ceiling of treatment of ‘symptom relief only’ and reviewing a person’s wishes for end of life over time are modifiable and thus may be ways that we, as clinicians, can influence our patients with dementia dying where they wish.
Although use of routine data for such research enables us to open doors that previously seemed locked, preferences in this cohort are complex (4) and the actual location of death may not fully represent the patient preference. (5)
We need more research and education in this area, indeed it seems the slipper does not fit and it is no longer acceptable to apply models designed for malignant disease to those with dementia. What do you think? Have a look at the paper in more detail in the link below or via @Age_and_Ageing. Also, check out the recent twitter journal club discussion about this paper which linked, for the first time, the Hospital and Palliative Medicine journal club #hpmjc AND Age and Ageing journal club #AAAJC
Poole M, Bamford C, McLellan E, Lee RP, Exley C, Hughes JC, et al. End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine. 2017:0269216317736033.
Sleeman, KE. Twitter 2018
Sleeman KE, Ho YK, Verne J, Gao W, Higginson IJ. Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neurology. 2014;14:59
Etkind S, Bone A, Lovell N et al. "Influences on care preferences for older people with advanced illness: a systematic review and thematic synthesis," Journal of the American Geriatrics Society, vol. 66, no. 5, pp. 1031-1039, 2018.
Sleeman KE, Perera G, Stewart R, Higginson IJ. Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data. Alzheimer's and Dementia. 2017.