Dying well

Towards a better model of delivering change

“Bill died at 4am on 18 August 2010, the morning of his 86th birthday, in Ward 3 of Airedale General Hospital in north Yorkshire. His final view in life would have been the stained polystyrene tiles above his bed. The drab room in which he died provided a measure of privacy but little else. The walls were covered with a fading washable wallpaper of indeterminate colour. The room was a workplace for nurses and doctors rather than somewhere someone would choose to reflect on their life and be close to his family in his final days. Bill’s wife Olive would struggle past chairs, push away stands and tubes, and stretch across the metal guards surrounding his bed to kiss him. The room was designed for medical procedures, not for kissing.”

These words are the opening of a policy pamphlet, Dying Matters, written by Charlie Leadbeater and published by my old shop, Demos, in late 2010. They are about the death of his father. The introduction - and you should read it if you have time, because it is an extraordinary piece of writing - goes on to chronicle the death of his mother, Olive, just a few weeks later.

“My mother’s was a good death: she lived a long life; she was not in pain; she was surrounded by friends and family; she was in control and so she died with dignity.”

I read the whole pamphlet again last night. It was published nearly sixteen years ago. It feels as fresh as if it were written yesterday. That is not a good thing.

The policy problems Charlie identified are almost entirely stuck. Plenty of research has been done to define what a good death looks like. We know that most people would prefer to die at home or in a familiar community setting. We know that most do not - that hospitals absorb 81% of end-of-life spending even as successive governments have promised for decades to shift care into the community. We know that care homes are on track to become the leading place of death by 2040, and carry no statutory requirement to provide palliative care. We know that the social and relational dimensions of dying matter as much as the clinical ones. We know all of this. We have known it, in broad terms, for a very long time. And yet: what changes?

I am not writing about death today as a tortured and perverse metaphor for the political events of the week. But as the circus surrounding a political death once again dominates our national conversation, I choose to remember the consequences of our inability to pay attention to the complexity of making change on issues that - in the case of death - affect every one of us.

On this matter, I was radicalised by the death of Gloria Foster.

Gloria died on 4 February 2013. She was an 81-year-old widow who needed help getting out of bed. She died after an immigration raid shut down the care agency responsible for sending the helpers. No-one took on responsibilty for their clients. Gloria was trapped alone - starving, dehydrated, unable to reach help - for nine days. By the time she was found, soaked in urine, it was too late to save her.

I first heard about Gloria when I was working in the Cabinet Office. There were television screens in the open-plan office playing rolling news, and the story ran on the hour, all day. It stays with me because of what else was happening that same day: ministers were deciding to press ahead with a social care investment plan recommended by Andrew Dilnot, the economist they had put in charge of the question. The so-called Dilnot plan was going to cost taxpayers around £4 billion to protect the assets of those with high care costs. It would not have made a blind bit of difference to Gloria.

Another twelve years on, and we haven’t even implemented the Dilnot reforms, or put any real money into the care system, let alone done anything to address the catastrophic dysfunction of a state that cannot talk to itself.

When I wrote about pain a few months ago, I said that if the modern state could solve for this, it could solve for anything. The same patterns are at work here.

The problem belongs to everyone and therefore to no one. End-of-life care cuts across the NHS, social care, housing, the voluntary sector and family networks, with costs falling on one part of the system while benefits accrue elsewhere.

Prevention is structurally disadvantaged. The investments that would produce better deaths - earlier conversations, community care infrastructure, lay carer support, care home capability - are abstract, slow and hard to measure. The crisis at the end )the emergency admission nobody wanted, the ambulance called because there was no other option) is concrete, immediate and expensive. The system reliably pays more, later, for worse outcomes.

And knowledge exists - in abundance - but doesn’t travel. The UK has world-class centres of excellence in palliative care research. The hospice movement, which began here, has produced clinical and human insights that have shaped practice globally. But there is little infrastructure to turn knowledge into sustained, equitable practice at scale.

Compounding all of that is an obvious truth. Death is harder to talk about than almost anything else in public life. Who among us wants to confront our own mortality and that of our loved ones until the reality is upon us? As a result, the conversation about what we owe each other at the end of life - about what the state should provide, what families should be expected to bear, and what the market can and cannot do - has never really been had.

Policy is not enough

I have been working in public policy since I was 23. But as a way of making change, it is profoundly limited. How many pamphlets and pdfs have really made a difference to what happens in the real lives of people? Even the writing of Charlie Leadbetter - who brings those humans to life in his work better than any other policy author I know - can’t touch the sides of real change.

Campaigning matters - but campaigning on these wicked, cross-cutting problems is relentless, sisyphean work. Keeping the agenda alive requires constant energy in the face of a political culture that would prefer to look elsewhere. The brilliant people doing it deserve more than a system that forces them to fight the same battles over and over.

So as I think about the next twenty years of my working life, I find myself wanting to build as well as argue. To put things into the world that change the conditions, not just the conversation.

When I was at Money and Mental Health, we built a tool for our community called the Shopper Stopper. It was a browser plugin that met a real need our research had identified: it enabled people to block retail websites to help control binge spending. We ran it for a few months and then the board insisted we close it down: we were a research and policy organisation, not a service provider. So we treated the product as a research experiment and campaigned for others to build.

That was the right decision, given our mandate, but I’m tired of staying in that lane. It’s why I joined Zinc, a venture builder, which has helped dozens of people start new commercial and social enterprises over the last eight years. We’re trying to work out how to build the things the world needs most. And, thanks to the support of a generous donor, we’re starting a programme that will look at transforming end of life care.

Innovating end of life

Death, like pain, sits at the intersection of complex medical innovation and the most human of interactions. Clearly: medical innovation matters when it comes to chronic illness and pain. And spending time in a hospice recently I couldn’t help but notice the tech - the hoists, the sensors, the software, the sophisticated machinery that helped keep people (including the staff) safe and comfortable.

So commercial innovation pathways matter here. But you also need to redesign human systems, build relational infrastructure, change what care homes expect of themselves and what families know to ask for. Those changes are not investable propositions.

That means blended finance: philanthropy willing to act as first-loss capital, taking the greatest risk in the earliest stages. Government intervention that can buy proven innovations, redesign commissioning markets, and fund care for the long term. And private capital where the model supports it. Getting those three to work together, in sequence and in combination, is the job.

It will be challenging - obviously. But when I look the social and economic landscape the thing that feels most missing is coordination between the different lanes in which people are trying to drive change. Each domain contains talented, committed people but most are locked into their sector, mode and favoured solution-set.

Academic research remains academic research. Charities remain charities. Venture capital looks for venture-scale returns. Policy organisations focus on policy reform. Each operates within its own incentives, timelines and accountabilities and without coordination each fails to meet the ambition of our time.

So I want to build an investment thesis (and a donor pool) that is ‘solution agnostic’. Supporting the best innovations regardless of the pathway they have to make a difference. Investing where there is a commercial return (like a new medical device), donating where there’s none (like a what works evidence review), and structuring finance in new ways for the messy middle between those two poles, and most importantly coordinating and amplifying across the field.

This is, perhaps, the role that government should take, convening organisations and people behind common societal goals. It was once called “mission-driven government” and it was a good idea. But it isn’t happening, at least not yet. So why not get started and see what a motivated set of donors and investors can achieve?

I am - as always - keen to hear from anyone interested in joining the journey. (And I hope to have new news on our similar programme on Pain in the next few weeks).

I’ll leave the last words to Charlie:

“For thousands of years people have honoured the dead with special rituals and in special zones, from burial mounds to humanist funerals. These rites of passage first developed when life was usually nasty, brutish and short and death was sudden. The modern, long lives that we lead have created both an opportunity and responsibility for us to do more than that: we are the first society in human history that can plan to honour people while they are dying not just after they are dead. That is why we need to find better ways to die.”

Photo by Annie Spratt on Unsplash