By Dr Charlotte Augst, FGF Senior Policy Associate
Speculation abounds as to what the new team of Prime Minister Andy Burnham and Health Secretary Yvette Cooper might mean for health policymaking and NHS reform. I don’t have any insider knowledge, but I am pretty confident that Burnham’s framing of the NHS as ‘fundamentally just a treatment service’, which needs to become much more preventative, is helpful. It works in favour of those of us who are working towards a more community-based approach to health policy.
Burnham is of course right that the NHS can only function as a publicly funded health system, committed to equality of access, if it takes a more holistic look at public health, including how we create good health and not just treat poor health. This should now be more than obvious to anyone who is worried about how a larger and larger proportion of public spending is being sucked into the NHS; into hospitals rather than primary, mental health or community care; and specifically into acute and unplanned care.
Nowhere is this trend more obvious than at the end-of-life. And nowhere else is it clearer that this drift towards acuity and crisis activity is not aligned with what people actually want. It has been evidenced over and over, that the clear majority of people would prefer a less intervention heavy, gentler approach to end-of-life treatments. And yet, the vast majority of spending is not aligned with these wishes, and instead forces people into unplanned, crisis-driven use of hospitals. The Nuffield Trust, together with Marie Curie, recently reported that of public funds spent on healthcare for people in their last year of life, 81% was spent in hospital, and 56% was spent on emergency hospital care. Put another way, for every £5 of end-of-life healthcare spend, £4 was spent in hospital – with £2.80 of that on emergency hospital care.
Clinicians, managers and policymakers alike often assume that shifting to more preventive, community-based models will meet the resistance of citizens and patients, who are wedded to the idea of ‘hospital is best’. But this is not true at the end-of-life, where people put a strong preference for a different approach on the record. This of course does not mean that health professionals don’t frequently encounter upset families or patients who are desperate for help from an ambulance or urgent care team. Both sentiments can be true: people want their or their loved ones’ lives to end without a panicked ride to A&E in the middle of the night, but they can also be unprepared for what needs people might have at the end-of-life, or feel bewildered or blindsided by how to source help and support away from acute hospital care.
Recent research conducted by Compassion in Dying explores deeply, from the personal and the health professional perspective, how these encounters unfold. It confirms that people too often don’t have their wishes respected when they require help out of hours, or in a deterioration. But also that both people and professionals struggle to understand how to stand up a decent service response in the community, and how to make that feel reliable and safe. It advocates for a public health approach to changing these unwanted outcomes: people at the end-of-life lurching from crisis to crisis, and being prescribed treatment against their wishes (in a recent poll one in four people said that a loved one had treatment they wouldn’t have wanted at the end-of-life).
So what would it look like to adopt a public health perspective to death and dying generally, and to end-of-life treatment decisions in particular?
To begin with, it would acknowledge that people have agency. That they make decisions and therefore need good information and support with those. Too often, we try to improve pathways, services and outcomes ‘over the heads’ of people who will use them. Public health thinking forces us to understand what drives behaviours, both professional and personal, and what people need to formulate, document and then follow a more person-centred, patient-led, plan for their healthcare, including at the end-of-life.
No amount of Modern Service Frameworks, Neighbourhood Health Plans, or Single Patient Records will shift the dial on either escalating crisis demand or unwanted over-treatment, if we do not focus our attention onto the agency and aspirations of people themselves. This is the case at the end-of-life, but clearly needs to run through all NHS reform efforts: through public health thinking, we need to target what drives people’s and professionals’ behaviours towards over-reliance on hospitals, urgent care, and constant escalation and instead strengthen people’s agency to make the kind of choices that help them create better health and wellbeing in their communities.
I feel a generous reading of Andy Burnham’s explicit or at least implicit agenda for change is based on this very shift, too. This is about power, and it needing to be brought closer to the people who have to live with the impacts of it being exercised. Power to the people, even.
