How doing end of life differently can help sustain the NHS (and lead to better endings) – Mark Hazelwood

“Neither the sun nor death can be looked at with a steady eye.”
Francois de La Rochefoucauld

Amongst the stranger places on the internet are the sites which, if you plug in a few details, will tell you when you are due to die.  I checked just now and I am due to die in #2048.  It feels a bit sad, but at least it fits perfectly for this blog.

Famously, the final phase of life was embedded in the foundational rhetoric of the NHS – the new service would address needs “from the cradle to the grave”.  In practice the newly established NHS didn’t seem terribly interested in the needs and suffering of people approaching the end of life.  By the early 60s this neglect, in part, drove the emergence of the modern hospice movement.  Although much improved since the 60s the NHS, like most western healthcare systems which were designed to treat and fix, retains an ambivalent relationship with incurable disease and dying. I’m going to argue that re-focusing on end of life is an essential part of building a sustainable NHS.  Finding a better way through the uncertainties of modern mortality can unlock resources and improve people’s experiences of living with serious illness, dying and bereavement.  And this is a growing issue – by 2040, the number of people dying with a palliative care need is projected to increase by 12% to 63,000 each year.  I’m going to talk about services but also about the need for a wider whole-system approach.

People often argue that an aging population is a key factor in the cost pressures facing the NHS.   Of course this is true, but only in a very general sense.  Yes, people tend to use a bit more healthcare as they age, but the real jump in use (and therefore cost) occurs with proximity to death.  It is this expenditure in the last few months of life which accounts for most of the extra expenditure observed when you compare young and old populations.  In turn most of this expenditure relates to hospital admissions which increase dramatically in the final few months of life.   

Take a walk through your local acute hospital anywhere in Scotland and look around – one in three beds is being used by people who are within their last year of life.  Some of these people are in hospital for very good reasons and will benefit.  However, at population level, with the aid of a retrospect-oscope, we can see with certainty that many people spend time in hospital at the end of life undergoing treatment which has little or no benefit, or waiting to be discharged, when they would often prefer to be elsewhere.   Too many admissions are the result of health and social care supports in the community being unable to respond to crisis or deterioration. Acute hospital is the default and that is bad for people and bad for public finances.

At the individual rather than population level things are more complex. Together, clinicians and people who are “sick enough to die” often face great uncertainty. Will this particular admission to hospital extend life such that a grandchild’s wedding can be attended? Or perhaps, despite hopes and best judgement, this admission will see the person die in hospital having undergone invasive investigations and treatments which in retrospect can be seen as having been futile.   The key to navigating such personally and clinically challenging territory are open and honest conversations about what the future may hold – the likely limits of medical intervention, the balance of harms and benefits, and what is most important and valuable to you as a person who is now living final chapters of uncertain length.  Evidence shows that making a “future care plan” can reduce avoidable hospital admission and make it more likely that you live final months, weeks, days or hours as you might hope.  It’s not so much about the actual plan itself but that the conversations, thinking, relationships and learning that go with it can leave you (and supporting professionals) better prepared to respond to circumstances as they eventually and inevitably unfold.

The significance of end of life to our health and social care system is largely “invisible in plain sight” in the media and policy discourse.  Emergency admissions, queuing at A&E, delayed discharges and insufficient acute beds are the stuff of headlines. You won’t see any reference to the fact that nearly 1 in 10 will die during their current admission.  We prefer to frame policy responses in terms of clinical conditions or settings. You’ll  sometimes find end of life in the margins of other plans and strategies or given its own little separate domain as if it has nothing to do with the big boy issues.  Despite the vast resources involved and the significant scope to improve people’s experiences you’ll search in vain for the laser-sharp institutional focus or the well-established and resourced programmes for research, innovation and improvement.  Sometimes I think this neglect must be cultural in origin, something to do with the personal existential challenges of confronting mortality.  We don’t like to look at the sun.

How do we change this?  At local level there is a need for:

• a visible locus of senior leadership and accountability for the improvement of end of life care
• interagency partnerships charged with improving care. These partnerships will need representation from across the health and social care system, and need time to develop relationships, trust and shared ownership of improvement
• a systematic and effective approach to identifying people with high and increasing needs who are at risk of dying
• routinization of future care planning
• a digital platform which can share and update people’s plans across settings
• investment in rapid response community support for people and their carers (to be funded from resultant reduced hospital admissions and quicker discharge)
• shared accountability for outcomes which are measured, understood, reported and published. Critically we need to refocus resources on outcomes which represent value – to the system, to society and to individual people. 

I’m not unaware of the institutional and governance challenges in establishing and making such arrangements effective – other more knowledgeable authors explore these issues elsewhere in the #NHS2048 series.  Encouragingly attempts to implement this sort of whole-system, value-based, population approach are underway, for example the Highland End of Life Care Together partnership.  As  William Gibson said “The future is already here – it’s just not very evenly distributed.“

Of course how you experience serious illness, dying and bereavement isn’t wholly or even mostly determined by contact with formal services. Structural factors – for example your financial resources, your community and social connectedness, and your identity make a huge difference.  Death is not “the great leveller”:  people who are already disadvantaged tend to have worse end of life experiences.  It is important that we think beyond service solutions and take a whole system approach. As a country we can take action on these structural  factors – for example newly devolved welfare benefits are now more accessible to terminally ill people, and support for funeral costs increased. “Compassionate Community” initiatives are strengthening social connections and nurturing community-led informal capacity to provide care and support.

Education is important too.  You are reading a policy blog, so statistically you have a higher than average education.  How confident would you feel about supporting a family member, neighbour or colleague if they were dying or bereaved?  Public education (such as SPPC’s End of Life Aid Skills for Everyone course) can build comfort and confidence to deal with these challenging circumstances which will impact most people at some point.   This sort of public education needs to take its rightful place alongside ante natal classes, first aid and other foundational life skills.  Scotland can become a country where everyone knows how to respond when someone is caring, dying or grieving.  We can be a place where people increasingly have the knowledge, skills and opportunities to plan and support each other through death, dying, loss and care.

In summary, death, dying and bereavement are inevitable, but they are not immutable.  We can improve experiences whilst making better use of scarce resources. 

Mark Hazelwood is CEO of the Scottish Partnership for Palliative Care and Good Life, Good Death, Good Grief