Dr Anna Gorringe, End of Life Care Lead at UCLPartners
I’m going to tell you a secret. Care homes are brilliant. Their staff are some of the most hard-working, inspirational people I’ve ever met. But most people don’t know this. I didn’t always know this: here’s the story of how I found out.
“I don’t speak ‘Care Home’” I reflected to a colleague, after visiting a resident approaching the end of life. As a palliative care consultant comfortable with looking after patients in both acute hospitals and their own homes, I still find clinical consultations in care homes bewildering. Where are the notes? How do you find the staff? Does that resident always look so poorly? I often feel overwhelmed, unsure of my clinical decisions or how management plans I suggest will be implemented, and desperate to leave.
“They smell of wee” is what most healthcare professionals in the acute sector will tell you, if asked about care homes. That, and “they always send in patients inappropriately and then they die with no dignity in A&E. It’s awful”.
What about the public? “I promised my mum I’d never put her in a home” is something you hear a lot from relatives, when the topic of their loved one not being able to manage at home any longer is broached. Well-publicised cases of abuse in some homes have not helped, but there can also be a deep sense of sadness at the loss of independence and individuality that moving into an institution can represent. I vividly remember walking into my grandma’s residential home as a teenager and being terrified I wouldn’t recognise her in the sea of grey.
With these preconceptions, intense pressure on resources and a drive to reduce avoidable admissions, is it any wonder that care homes are labelled as a “problem” by many of us? Is that fair? Undeniably we have a problem: we face a 25% predicted rise in expected deaths in England by 2040. We are living longer with more co-morbidities and will require more care towards the end of our lives. People with complex problems previously cared for in community hospitals are now looked after in care homes. We have to transform how we are cared for – most of us would not want to “waste” more time than absolutely necessary in hospital in our last months of life, and we simply cannot afford trends of increasing levels of hospital treatment towards the end of life to continue. London has fewer “deaths in usual place of residence”, a surrogate marker for the quality of end oflife care, than the rest of the nation, and a lower rate of deaths in care homes. So care homes must be the problem, right? Wrong. Evidence shows that residing in a care home is, in fact, a protective factor against emergency hospital attendances and admissions for people with dementia in their last year of life. Care homes, far from being the problem, are already providing a solution.
Recognition and support
So, how do we help them? We can start by recognising the amazing work they already do, in challenging circumstances, to provide excellent care to a vulnerable section of our society. It is gratifying to see more resources and attention being directed towards care homes, with improvement guided by the Enhanced Health in Care Homes framework. The literature on evidence-based quality improvement programmes in care homes is growing. We must “work with”, rather than “do to” – something beautifully demonstrated by the “Pimp my Zimmer” initiative designed by one of the Prosper study care homes to improve residents’ safety by reducing falls.
Our End of Life Care team has collaborated with care homes in our region to develop “What’s Best for Lily?”, a suite of educational resources designed to improve end of life care for residents. Through this work we have learned much about the challenges of quality improvement in care homes – high staff turnover, competing priorities, many staff speaking English as a second language, difficulties demonstrating change, basic technology, hierarchical structures making it challenging for carers to initiate change, and a lack of clinical support, to name a few. There is also a lack of time, space and resource for education, with some managers not seeing the value of training. Our heart sank when a care home manager told our team that she liked “education where staff can do it on their own… while they are watching tv”.
We also found that staff were often grieving the loss of residents they had cared for. The average life expectancy of a resident in a care home is 14 months, and staff often have no formal support for coping with what are effectively multiple bereavements. If we are encouraging residents to think of care homes as their own homes, what does that say about the boundaries for staff between being a paid carer and something perhaps more akin to a relative? After all, care home staff see their residents on a daily basis – often more regularly than their relatives. The “looking after ourselves” section in “What’s Best for Lily?” provides a structure for staff to reflect and support each other following a death – but this still requires time to be found in a busy day.
In the midst of these challenges, perhaps we could be forgiven for feeling frustrated by the difficulties and sometimes achingly slow progress when rolling out our education materials. But there were also many things to celebrate – most staff were highly engaged, extremely motivated, and very appreciative of support. They often care deeply about the wellbeing of their residents and advocate passionately for them. They notice things that those of us with an acute hospital or community training perhaps wouldn’t, and so find imaginative solutions we wouldn’t have considered. The most important thing we have learned, echoed in the literature, is the importance of building strong relationships with staff to support change. Often, repeated emails and phone calls went unanswered, but a personal visit could yield much-needed data and insights, as well as good will and renewed energy for the project.
I may still not speak ‘Care Home’. I am much more comfortable in the familiar surroundings of an acute hospital. But I recognise the contribution care homes are making to providing high-quality care for vulnerable residents approaching the end of life, sparing NHS resources in the process. In the End of Life Care team at UCLPartners, we want to use our skills to support further improvement. Listening to the wisdom of care home staff, who understand their ecosystem better than we outsiders ever could, must be the key to achieving that goal.
And the starting point is always to remember: care homes are not the problem. They are the solution.