Nuno Santos Lopes is Director of Research, Innovation and Community Engagement at Nightingale Hammerson, a London based provider of residential and palliative care, and Dr Ros Taylor is Medical Director at Harlington Hospice. Here they discuss the role of care homes for people nearing the end of their lives.
Over 129,000 care home residents died in England and Wales between October 2022 and September 2023. These are huge numbers of ‘endings’ and we hope that most were peaceful and managed well by the teams who knew them best. We also know that the demographics predict a huge increase in the numbers of people likely to need institutional care in their final years, as life expectancy increases.
The question is whether care homes can provide the holistic, multidisciplinary care – attending to mind, body and spirit – that defines hospice care in the UK?
Care Homes all aim to provide the most fulfilling last years of someone’s life. Over the past few years we have observed an increase in the vulnerability and multiple comorbidity of residents, making the care required more challenging and complex, with an increased need for confident and expert palliative care.
Just over 20% of all deaths happen in Care Homes nationwide, and if we compare the age of people dying in different settings, we observe that for people aged 85 or older, almost 35% died in care homes, compared to only 2.2% in Hospices.[i]
It is also estimated that around 70% of people living in care homes have a diagnosis of dementia or cognitive impairment which is now the leading cause of death in England and Wales[ii].
If we focus on dementia as a condition, it is known that for the person living with dementia, the less we change the environment the better. Care homes therefore will be best positioned to deliver palliative dementia care, compared to hospices, which are short-stay, often without secure environments for people living with distressed behaviours and the need to walk with purpose.
So how can care homes become more confident with the huge role they have to play in supporting residents at the end of life ? ideally it needs to be a team effort between the care home team , primary care and hospice outreach staff. The key need is to have a multi-disciplinary approach with access to therapies, psychological and spiritual support, and symptom expertise if needed. Confident communication with families, and recognising closeness to death is key – without inappropriate admission to hospital.
Nightingale House, an outstanding-rated care home in South London, is a good example of collaborative work between the different teams that has led to over 90% of the annual deaths (between 50 to 60 deaths/year) happening in the care home. This compares to national data suggesting that only 80% of permanent care home residents end their days in their care home, with 16,000 (20%) residents sadly dying in hospital each year.
There are so many benefits for a care home resident to spend their final days where they live : a familiar homely environment, a palliative care approach to what matters, unrestricted visits, long term relationship with care staff, resident and family, and crucially a much more economic cost compared to hospice or hospital.
To increase the public and commissioners perception of the potential of excellent end of life in care homes, it will be important to understand the value of ongoing education in palliative care for staff, to have hospices structurally involved in the ongoing support of care providers and to incentivise GPs to support care homes. Currently providers are required to spend thousands of pounds on GP retainers if they wish to have robust, continuity of GP cover. It is also essential to have access to reliable data for example on care home deaths, hospital admissions, and ambulance conveyance so that Care Homes can be benchmarked, incentivised and supported to be the Hospices of Future.
@ntslopes @NGHHammerson @hospicedoctor @harlhospice
nightingalehammerson.org harlingtonhospice.org
1www.gov.uk/government/statistics/palliative-and-end-of-life-care-profiles-december-2023-data-update/palliative-and-end-of-life-care-profile-december-2023-update-statistical-commentary
[ii] www.alzheimers.org.uk/about-us/news-and-media/facts-media#:~:text=It%20is%20estimated%20that%2070,dementia%20or%20severe%20memory%20problems.
