At the end of life, we don’t just need service change, we need culture change.
Last month Marie Curie and the Nuffield Trust published new research into public expenditure at the end of people’s lives. The findings are an important read.
As you’d expect there is a high level of spending on health and care in the last year of life. But what is more surprising is where that money is spent, being disproportionately distributed towards largely unplanned hospital care rather than proactive and coordinated care in the community through primary care and hospice services.
They find “for every £5 of healthcare spent on people in their last year of life, £4 was spent in hospital with £2.80 of that on emergency hospital care”.
We’re spending money on things people do not want
Evidence suggests that this is clearly at odds with what people want for themselves. Our report, Rethinking the UK’s approach to dying, found that 8 in 10 of us would rather prioritise quality of life over quantity towards the end. People do not want to spend their final months in and out of hospital. Family members regularly call our information line for help to ensure the dying person they care for does not have an emergency admission when the next deterioration happens.
But Marie Curie’s new data points starkly to the fact that people’s wishes to be cared for in their community at the end of their lives are not being well met. Other data backs this up too – our research found one in four bereaved people say the last close friend or family member they know who died received medical treatment they would not have wanted. And one in three hospital beds at any given time are being occupied by someone in the last 12 months of their life.
Too many people are enduring treatments and interventions they do not want. But are also not getting the support they need at home, so are left with no choice but to turn to emergency services.
How do we make it easier to deliver the care that aligns with people’s wishes?
Almost everyone working in healthcare agrees that if we get better at understanding and responding to what dying people want, it will reduce unnecessary hospital admissions and unwanted treatment. Put simply, respecting people’s preferences delivers better value for people and the system.
There are a great many conversations happening right now about how to do this and with Labour’s upcoming 10 Year Plan for Health it feels we are on the cusp of significant policy changes that could reshape how end-of-life care is delivered.
These conversations, however, often focus on how service design, integration, and the allocation of resources can create the right conditions to support the shift of care from hospitals to communities.
Whilst these conversations are needed to improve people’s experiences at the end of their lives, they too often miss something – how to ensure people themselves can make their own decisions about what treatments they accept and where they want to be cared for.
It’s paramount that the wishes of dying people are not lost amongst all the conversations about clinical delivery. Improving dying is as much about helping people and communities to make their own decisions and have them respected, as it is about getting services right.
The question is often, how can we better respond to people’s preferences? But of equal importance is the question, how do we know people’s preferences in the first place?
Why is giving people opportunities to consider their preference so important?
Dying people tell us they want honesty, clarity and an opportunity to make and record informed decisions before a crisis about their end-of-life treatment and care. And people tell us what can happen when they are not given these opportunities.
We have a nurse-led phone service specifically for people who need help because they feel the wishes of their relative, who lacks capacity, are being ignored. People often say they feel like they have to ‘fight’ a medical system that defaults to prolonging life over finding out what the person themselves wanted. It is telling that families who call us who haven’t done any form of planning, almost universally say:
“Why didn’t someone speak to us about the decisions we might face when my Dad could make his own decisions? Why didn’t someone tell us the different ways he could record his wishes? It would have been a tough chat but it would have been far preferable to the situation we’re in now, where no one is on the same page about what he wants”.
We need a societal shift where people and communities own dying, not healthcare services. But how do we foster that culture change?
We need to mainstream and normalise conversations about the end of life. We need deliberate policy interventions that focus ‘upstream’ on helping people and communities themselves to consider and make decisions if they want to. We cannot assume that by getting integration and service delivery right, people’s wishes will automatically be known and followed.
Policy initiatives that specifically enable people to make their own informed decisions should include:
- An advance care planning conversation guarantee, where discussions about priorities and future care wishes can take place before a crisis in a way that is routine not exceptional. The NHS App and the health check could be access points to this conversation. Over time, people would come to expect these discussions and healthcare professionals could feel confident that they are starting an important conversation at the right time, rather than seeing it as a difficult conversation which can feel uncomfortable to approach.
- A public health campaign focusing on how setting out wishes for the end of life in advance can help. This should include the decisions people might be faced with, and the different ways in which someone can plan for their care and treatment.
- There need to be more opportunities to enable people to easily complete advance care planning documents, such as an advance decision or advance statement, through already established channels like the NHS App and local electronic records providers.
All eyes now are on the upcoming 10 Year Plan for Health and how, in a new policy landscape without NHS England, it will be implemented. This plan could help us all to transition to a new normal where people and families have meaningful opportunities to talk to each other and their healthcare team about what they do and do not want and crucially, to record such decisions. It’s a powerful opportunity to reshape the public conversation about death and dying to being one about respect and choice, with people in control of decisions.
Lord Darzi, in last year’s review of the NHS understood and stated clearly that we don’t just need service change, we need culture change. Let’s make sure the 10 Year Plan doesn’t miss the opportunity to support this shift.