Dying with dementia – we need to measure more than the place of death

Katherine Sleeman is an NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine at the Cicely Saunders Institute, King’s College London. In this blog she discusses her paper Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data. She tweets @kesleeman

Over the past decade there has been a strong policy focus in the UK and elsewhere on dying out of hospital as a marker of good quality of end of life care. We have previously shown that, for people with dementia, hospital deaths have fallen over this time period, possibly as a result of these policies.

However, it is increasingly recognised that the place of death is an imperfect proxy for the quality of end of life care, providing little more than a snap shot of where a person was in their last moments.

Transitions between health care settings, for example moving from home into hospital, have been suggested as a better marker of the quality of care for people nearing the end of life. However, we know little about the frequency with which people with dementia make transitions between health care settings in the months leading up to their deaths, or the factors that might help us prevent some of these transitions.

In a new paper published this month in Alzheimer’s and Dementia (freely available here), we set out to measure the frequency with which people with dementia attend the Emergency Department (ED) in their last year of life. We used the NIHR Maudsley Biomedical Research Centre (BRC) Clinical Record Interactive Search (CRIS) to identify people with a clinical diagnosis of dementia who had died between 2008 and 2013. Individual linkage of these clinical records to Hospital Episodes Statistics provided information on ED attendance during the twelve months preceding death.

We identified 4,867 people with a clinical diagnosis of dementia who had died. Three quarters of the cohort had at least one ED attendance during their last year of life. The frequency of ED attendance increased the closer patients were to death, with a quarter of all ED attendances occurring in the last month of life. What’s more, ED attendance in the last month of life was more likely to be following an emergency services referral (rather than GP referral), more likely to be by ambulance, and more likely to be out of hours, suggesting that these visits are precipitated by a crisis.

We examined a number of demographic, illness-related and environmental factors to identify predictors of ED attendance in the last year of life. Perhaps predictably, we found that people who lived in less deprived areas were less likely to attend the ED. People with vascular dementia were found to be more likely to attend ED than people with Alzheimer’s dementia, possibly as a result of the step-wise deterioration in this condition. In our study, having a higher MMSE (ie, less severe cognitive impairment) was associated with more ED attendances.

Two factors stood out as particularly interesting and relevant for policy. The first was that care home residence was significantly associated with fewer ED attendances, ie that living in a care home may mitigate against ED attendance. While our data can not tell us anything about the appropriateness of transfer to the ED, this does highlight the need for investment in care home beds, and complements the recent Lancet study estimating a need for over 70,000 more care home beds by 2025.

The second factor we found most interesting was that, in contrast to the trend towards out of hospital death in dementia, ED attendance in the last year of life has increased over time. We think that this indicates that national policies that aim to improve end of life care have had little impact on some aspects of potentially aggressive care towards the end of life. Our population is ageing, the number of people living with dementia is projected to increase, and pressures on acute hospital and emergency care are already unprecedented. Policy makers now need to turn their attention towards other aspects of the quality of end of life care, such as transitions between community and acute settings, in addition to the place of death.

Read the paper:  Predictors of emergency department attendance by people with dementiain their last year of life: Retrospective cohort study using linked clinical and administrative data

2 thoughts on “Dying with dementia – we need to measure more than the place of death

  1. Really interesting article as my Dad died from Aspiration Pneumonia resulting from Vascular Dementia. Dad is the exception to your research findings. He spent 15 months post Stroke with Vascular Dementia . His last year he had 12 admissions to a variety of hospitals, a care home and a nursing home. He died on an acute medical ward after a 3 day admission. Dad and I had amazing care, compassion and support at the end of his life. I was involved and supported to make a decision to give Dad Palliative sedation. The nursing team and Dr Mark Holland were amazing and Dad’s death couldn’t have been more dignified. I was supported by an amazing HCA who helped me lay Dad out. Dad’s care at Wythenshawe Hospital was as dignified and respectful as I think death could be.

  2. Pingback: Shared via Jennifer Moran Stritch – Dying with dementia – we need to measure more than the place of death – British Geriatrics Society | Loss, Grief, Bereavement and Life Transitions Resource Library

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s