End of life - silos to system
28 January 2025
We are sharing this essay on end-of-life by Dr Nadeem Moghal. A long-standing friend of GGI, Nadeem combines data, and his experience as a medical director, crafting a story and argument that is compelling and rooted in thinking differently. He comes to a considered way to solve the challenges by focusing on understanding and meeting the citizen’s needs driven by the right leadership.
As a director at Strasys, he is part of a formidable team of analysts and thinkers from a wide range of disciplines, from mathematics to anthropology, combining decision intelligence and human stories to help leaders think and act differently.
Hospital home hospice
The NHS integration reform is meant to somehow make seamless the flow of information, the flow of work, and the flow of patients between the many structures, services and silos that make up the NHS.
We have 42 integrated care boards—Trying to Integrate Care Systems (TICS).
This essay illustrates the challenges of integration in something that we all do. We all do it once. We all die.
The end-of-life services in an NHS integrated care system should be the test case to prove the value of the integration reform.
In the meantime, in the UK, the end-of-life discourse is filled with politicians working to establish a law to enable assisted deaths (1). Yet another thing to retrofit into the end-of-life wiring. As the Assisted Bill works its way through several stages in the Houses of Parliament before getting Royal Assent (2), this house (essay) argues:
- The hospice sector built and continues to build the expertise, training and developing the workforce to meet end-of-life needs. It has an opportunity to scale its value.
- General practice is not where managing death expertise resides. End-of-life care should not be a general practice remit because it is an expert practice remit.
- Assisted death has emerged partly because of stories of failures in the current end-of-life offer. A high-quality end-of-life service and experience could eliminate or at the very least minimise the number of people turning to the assisted death service.
- The end-of-life silos and complex system wiring have trapped value, resulting in inconsistent care, resource waste, and variable experience.
- The integration reform struggles to prove value, and yet there cannot be a better place to start the work on genuine integration than by starting with the end-of-life offer across a system. A need that touches every part of a system that talks of integration: general practice; community services; acute sector; third sector; private sector (undertakers); community and neighbourhood; and family.
The current 'system', is not a system, let alone integrated. It is, wherever you look, a myriad of silos that have emerged over many decades, filled with passionate, earnest people, seemingly accepting or powerless to cross the chasms and resolve the system mess. All this, quite apart from the variation of resources and quality across the country.
The hospice sector is the pearl...
A case study
Recently, we reviewed the end-of-life 'system' across a London borough. The many stakeholders included all one would expect: hospital, hospice, primary care, the council, community services... many siloed services trying hard.
What we learnt was expected and disheartening.
Expected:
- The people were passionate about the care they provided and proud of the services they were part of.
- They had great ideas to solve the many issues that increased the end-of-life system wiring.
- The system wiring trapped waste and opportunity, making meeting needs harder, unnecessarily complex and expensive.
Disappointing:
- The passionate and proud people in all the silos knew they did not provide consistently reliable care, because of the handovers, communication interfaces, daily frustrations, and unclear accountability.
- The many leaders of the many silos seemed unable, unwilling, not motivated to agree on much.
- The hospice CEO could see, feel, and hear the public sector machines grinding everything to dust when there seemed a chance or a hint of progress.
- Our analysis laid bare a huge amount of trapped value, including a sizeable eight-figure sum, but with so many silos, no one was ultimately accountable for releasing the traps. No silo CEO was going to downsize a service or give up services as part of resource reallocation, a new business model, and system redesign.
It was worse.
The people who tried to make the 'system' of silos work to meet the needs of the dying were... the dying and their families.
The NHS is big on patient experience as a driver for change. There cannot be a more emotive and difficult moment than the months, weeks, days, hours, and the final moment. Before you die, do you mind filling out the feedback form... After which everyone and everything around the dead is about mourning, making arrangements, marking remembrance, and moving on—the moment when the end-of-life system has little to contribute. It moves on. Unchanged.
The data-filled analysis and insights left us with a thought. 'If only'. We were not trying to reach Mars, but we might as well have been.
![End of life Hope](https://www.good-governance.org.uk/assets/uploads/images/_1920xAUTO_crop_center-center_75_none_ns/end-of-life-Hope.jpg)
Hope
Preventing Euthanasia image is from the Australian campaign against assisted dying
The hope is not in the assisted dying Bill but in the national discourse it has triggered about death and dying, which might, just might, bring focus to the NHS statement of an end-of-life right (3). It states…
When you're approaching the last stage of your life, you have a right to high-quality, personalised end-of-life care that helps you live as well as possible until you die.
We have a right to high quality, personalised end-of-life care... Basically, a good death.
Stating it as a right is of course not the same as reliable delivery of that right. Have a look at the NHS constitution and how we have fared with the many other rights since 2016. In the case of end-of-life, it is not more money that is the ask - many millions are already trapped in the way the many 'systems' are organised.
We can get to that right if we learn to think differently.
But there is also a risk with the current discourse.
The double cost of the assisted death
The assisted death process that needs to be implemented for those with less than six months left to live will take some time to work out. Two doctors and a judge will have to say yes, or no, within the six-month timeline. The process will have to be robustly governed, insanely well documented, transparent under intense scrutiny and – the toughest bit – slick and efficient like no other part of the NHS and judicial services, both currently overwhelmed and now expected to work together at pace, on life and death matters. This will cost an amount no one has yet worked out.
The Times describes the difficult road ahead (4). The image is of a Randox retail shop front selling tests and other ways to pay to alleviate health anxieties. Next door to a shop front “Let us help you with your dying wish”
The other cost is the opportunity cost. There is a risk that the nation now expends unavailable resources of time, people and money, on establishing, managing and monitoring the assisted death law, with even less left for everyone else that seemingly has the right to high quality, personalised end of life care…
Death by numbers
Some numbers to help with the new thinking.
About 670,000 people die in the UK each year
Here is where we die (5):
- Hospitals 43.4%
- Home 28.7%
- Care/Nursing home 20.5%
- Hospice 4.7%
- Other 2.6%
The numbers describe the buildings in which we die. The Nuffield Trust has a valuable workstream on death. Their 2014 report is on the cost of dying depending on the building (6). Ten years later, the numbers and assumptions will have changed. Does it help to understand the per-building costs? Yes. We can extract some insights to raise some questions. Does that help better allocate resources? Yes and no. When we focus on costs to drive change, we stay trapped in silos and buildings.
Let's get into some of those rabbit holes and traps.
The GP trap
In our ‘system’ general practice gets incentivised to build, maintain and update a palliative care list that NHSE and CQC regulators say should be about 1% of the practice list. The incentive is worth six points which comes to an annual income of £1280.58
The bureaucratic process of building lists helps bring focus to a population segment that needs focused expert help. There was a time, a long time ago, when the GP was key to a good death. It might still be true in places. The GP is not the expert. This is where GPs will set a mob on me, just as some doctors have against physician associates. End-of-life, as happened with obstetric care, sexual health, and as will happen in time, women's health, and paediatrics, should no longer be the responsibility of general practice. Before you cancel me, or some such, hear out the argument.
Dying is a 24/7 need, with needs that need addressing that cannot wait for the 8am telephone queue. Experts in palliative care, in death, engaging patients and families in the hard conversations can meet the needs. Expert also in the drugs, and drug combinations, that can ease the final months. Remembering that most deaths happen without needing drugs to get to the final breath. The GP who initiated the difficult conversation is rarely the person deciding to transfer care at 2 am. Fragmented siloed ‘care’ even in one silo.
There is a bureaucracy to dying, and some of it sits in general practice. The bureaucracy is scattered, much as it is now for those with long-term conditions, but to repeat a point, dying is a 24/7 thing. To be responsive, and effective, there can be no silos. It needs one bureaucracy, one service, and one team around the dying citizen. This is not asking to get to Mars.
The hospital trap
Now to the biggest 43.4% worth of trap.
People dying in hospitals – well, that is no surprise. The trauma victim, the heroic but futile resuscitation bay outcomes, the unrecoverable chemotherapy sepsis, the intensive care outcomes… and then there are those that should not have been admitted but came, stayed, and died. The frail, the deteriorating, deteriorating wherever they started and ended. Does anyone actually choose to die in a hospital? In today’s NHS, it is unclear how that choice is made, except after a crisis event outside the hospital, the dying surrounded by frightened family, with stranger decision-makers ferrying the inevitable into noisy, busy, understaffed, overworked corridors, wards and side cubicles where the blood pressure will be measured every four hours, until the very end.
We also know this – track every discharge from a district general hospital from a year ago, and the outcomes point to a third of those discharged dead within a year. Not all at once, but dead in the subsequent 12 months. An easy retrospective analysis, but how does one predict that outcome? Is it a prediction problem or a data and decision intelligence issue that might help the system decision-makers make better decisions with families and the deteriorating, dying person? The family might not want to know, but everyone knows.
Someone somewhere is training an AI machine with a sea of data to build an end-of-life prediction aid. Imagine how that might be used for assisted dying...
Imagine you have less than a year to live and somehow the decision makers in the system dropped you into a hospital bed albeit after a prolonged and life-shortening stay in A&E. The hospital, with all its services, will deliberate, do something, sometimes demur, but ultimately fail to make much difference to your inevitable deterioration and journey to death. A lot of resources will have been consumed. In the end, the fight with nature is always lost, no matter how much we spend in that last year or last month of life.
Walk through the wards of a district general hospital, and you will conclude that the expensive building, filled with thousands of staff and many services, is mostly warehousing the frail, the old, the deteriorating, the dying. Warehousing. A word used by the CEO, recognising that all his organisation was really doing was trapping humans in a building waiting to get back home, a care home, a nursing home, a hospice. An organisation that wants to do more specialist work but cannot because the wards are full of patients that are deteriorating, whatever the nephrology, neurology, cardiology, or any-ology expert tries.
They shouldn’t have been admitted in the first place.
Walk through an A&E department and you will be struck by the age of patients; 70s, 80s…There are of course children who, if admitted, will almost all be discharged the next day. The majority are old, frail, deteriorating folk who are sent in from care homes, nursing homes, and their own homes, by non-decision makers who don’t want a death on their watch or families that have not had or accepted that honest conversation.
Christmas 2017 was one such walk-through. As the executive on call, the A&E was drowning with full corridors. A call from the NHSE London executive on call, worried about the London 12-hour breaches (the good old days), called to say, in that never-to-be-forgotten tone, go in and sort the problem. With my magical superpowers I of course went in and made no difference. But the staff, rushing around, often staring at computer screens, were irritated, bemused, or grateful someone seemingly important was around to acknowledge the madness.
Every single poor soul on a trolley set up against the corridor wall was old, frail, and often confused, with months left to live, if at all. They came from care homes, nursing homes, and their homes, and I knew, we knew, it was entirely futile. At best we would house them for a bit, then struggle to get them back, because of some assumption about intense physiotherapy that would never recover something we made worse by the very act of admitting them to a bed.
I confirmed, again, my lack of magical superpowers to clear the A&E backlog.
We blame the lack of social care beds, the lack of hospital beds, the lack of workforce, and the lack of ED estate capacity. It is none of that if we are serious about enabling a dignified death we want for ourselves. A hospital that has invested in 26 cardiologists, also has just three palliative care consultants. Go figure.
The last thousand days are surely when we can move skills and workforce from warehousing units to community investments with expert decision makers, preventing admissions, and a good death at home, care home, nursing home or hospice.
The care home/nursing home trap
Almost 90% of the care and nursing home sector is provided by a long list of private sector businesses, the vast majority as SMEs.
Who provides and manages end-of-life in the buildings is decided between the resident, the family, and the private provider, which is added to the cost of care. The variation is not known. The quality of the decision-making is not known. The acute sector is trapped by the decisions made, transferring responsibility. The sector’s contribution to the emergency demand is felt, and someone somewhere will have the numbers.
They are part of the system, but we know the system is barely that.
The hospice
The sector does good work. Expert work (7). We have Dame Cicely Saunders to thank for the world's first hospice, St Christopher's Hospice, founded in 1967 (8). A start that became a global movement that brought together in one place expertise, teaching, and research in palliative medicine. It wasn't happening anywhere else. It took someone who trained as a nurse, then a medical social worker, and finally a physician, to connect the dots that is the legacy today.
Palliative care experts are spread across hospitals, community services and hospices. As an expert it is the hospice where you will likely want to be based, and work, in the company of experts, doing focused expert work, supporting patients trapped in the madness of hospitals that try to do everything for everyone, all at the same time, slipping into mediocrity.
The hospice sector is responsible for 4.7% of deaths. The sector is very busy sharing data, and stories about beds being closed and staff numbers being reduced, as costs increase. They spend a lot of their time raising money, which is an opportunity cost.
Why, in a nation such as ours, do we rely on charity to do such important work?
Some numbers:
4.7% of 670,000 is 31,470 deaths.
The sector runs on £1.6 billion, of which about £500m comes from the taxpayer. the rest from charity donations.
That comes to about £50,000 per hospice-supported death. Not a fair calculation.
The hospice sector does more than just deaths in beds, as outlined in another hospice sector Nuffield Trust report (9). They do death very well. So well, that a recent family friend dying in a hospice, cared for brilliantly, asked to go home to die because that was her wish. The thought horrified her partner and grown-up children - how could they do what the hospice does, at home? So, she died, not at home.
The hospice-driven narratives, focused on the cost of national insurance, and the rise in minimum wage bills, are understandable but are not where the sector's national opportunity sits to transform the experience of dying. The hospice has value beyond the numbers, and beyond its current pain of costs, and charity donation dependency.
The hospice sector is essential. It is focused, expert, and driven by values that are stretched in the busy, understaffed, overworked public sector hospital buildings.
Imagine for a moment, the hospice as the focus of thinking differently.
![Group hosp bed](https://www.good-governance.org.uk/assets/uploads/images/_1920xAUTO_crop_center-center_75_none_ns/Group-hosp-bed_2025-01-28-172057_lufa.png)
Starting to think differently
Back to the London borough. On one slide, we could show the layer upon layer upon layer of jigsaws with gaps, frayed edges and almost innumerable transformation projects trying to break through the many silos. Silos, almost all public sector services, each with its own leaders, managers and unclear accountability. A 'system' that is not a system built over the decades. Nothing stopped. Just more and more and more added hoping for improvements.
Passionate people assume that the products and services are what the consumer needs for that dignified death. Yet, listen to stories of failure and frustration to meet needs that have in part driven the politicians to climb the wave of public opinion to show they are listening and acting, but not on the right to high-quality, personalised end-of-life care… instead, we are going to invest many millions in the right to an assisted death.
Our analysis showed resources were duplicated, overlapping, connected, disconnected, known and unknown. No one owned the 'system’, and no one had the courage, to lead, to start understanding the needs, and from that position, redesign, reshape, and reallocate resources to ensure a single seamless 24/4 service to do just one thing. Meeting expertly, on time, every time, the needs to ensure that...
When you're approaching the last stage of your life, you have a right to high-quality, personalised end-of-life care that helps you live as well as possible until you die.
Instead, they concluded that a call centre was the transformation needed to make the many silos work together, driven by the demands of the dying patient. Another jigsaw piece was added. Another cost. Another uncertain taxpayer investment. So, nothing changed.
One system person could also see it all but was powerless. The junior partner who also spent time worrying about the frayed shoestring—the hospice CEO.
Place – the place for meaningful integration
The work was not wasted. It was necessary to show the crazy wiring, the unintended chaos, and in all that, the trapped value and opportunity to get it right and meet the right to high-quality, personalised end-of-life care…
Instead of starting with structures and tinkering with the wiring or the costs per building, we might want to start with understanding the needs of the dying citizen and family. You are thinking—but that is what the services do all day, every day. There is a sea of patient experience feedback, complaints, frustrations… data that is surely telling everyone about unmet needs. If this data alone was effective in driving change, then why are we not meeting needs consistently and reliably?
When we start with understanding needs, we can more effectively stress test what we do, where, and by whom… products and services… are they the right ones, and how are they organised, allocated, and led... to meet those needs? We also need accountable leadership that will make the decisions to stop what is not needed, develop what is, and reorganise what we have, all so the experts can apply their expertise to deliver that right to a good death. Stopping futile hospital admissions, keeping the dying at home, the care home, and the nursing home.
- Using value-based healthcare thinking, what is the population need and what are the resources currently allocated?
- Are the resources proportionate to the need—26 cardiologists vs. 3 palliative care consultants?
- What is the expertise needed in that decision-making to help keep the patient in the right place for that good death?
The secretary of state speaks of moving care from hospitals to the community. If we cannot do it for the population in their last thousand days, then it will remain an aspiration, as it has for many decades.
Making the idea of place real is going to take expertise. Place expertise is not about running community services. It is about new thinking, building new capabilities, new solutions, and new expert teams stopping admissions into the acute buildings. Start with those in their last thousand days.
The deteriorating, dying patient, who is a consumer, is well defined. They need one service. Led and delivered by experts working as one system, across the system. This is what transformation begins to look like.
The expert is not the GP, not the hospital, not the care home. It is the hospice sector.
The workforce will shift. The money will shift. The dying patient dies where they choose to die.
Someone may get to Mars, one day. In the meantime, we need to let go of current thinking rooted in existing structures, costs and frustrations, trying to integrate boards, assuming integration means integrating structures.
We could wait for the commission on the hospice sector, and the findings of the policy unit (11). Or we can start the work to meet needs.
The ICBs should commission their local hospice providers, the experts, to lead the work to build the system, from consumer needs up, integrating needs, even if that consumer is consuming their last.
Dr Nadeem Moghal
January 2025
Note:
- Ai has no hand in any of the author's writing
- The Nuffield Trust is probably the best source of objective analysis and reports (12)
- Conflict of interest: the author is a senior associate at the Nuffield Trust
References
- https://bills.parliament.uk/bills/3774
- https://lordslibrary.parliament.uk/hospices-state-funding/#:~:text=Hospices%2520receive%2520less%2520than%2520£,NHS%2520is%2520fully%2520state%252Dfunded.
- https://www.nhs.uk/conditions/euthanasia-and-assisted-suicide/
- https://www.thetimes.com/article/d1b9e78b-37fa-4f5e-abf2-17f579f5cadd?shareToken=01d99c1d65c65b2b760be8636ced72df
- https://fingertips.phe.org.uk/documents/peolc_patterns_of_care_factsheet_2022.html
- https://www.nuffieldtrust.org.uk/sites/default/files/2017-01/end-of-life-care-web-final.pdf
- https://www.hospiceuk.org/about-us/key-facts-about-hospice-care
- https://www.stchristophers.org.uk/about/damecicelysaunders/#:~:text=Dame%20Cicely%20Saunders'%20life%20and%20work&text=Dame%20Cicely%20founded%20St%20Christopher's,which%20is%20now%20established%20worldwide.
- https://www.nuffieldtrust.org.uk/sites/default/files/2022-06/hospice-services-web-1-.pdf
- https://www.nuffieldtrust.org.uk/sites/default/files/2024-12/Nuffield%20Trust%20briefing%20for%20Assisted%20Dying%20for%20Terminally%20Ill%20Adults%20Bill_WEB_update.pdf
- https://www.linkedin.com/feed/update/urn:li:activity:7284809323107516417?updateEntityUrn=urn%3Ali%3Afs_updateV2%3A%28urn%3Ali%3Aactivity%3A7284809323107516417%2CFEED_DETAIL%2CEMPTY%2CDEFAULT%2Cfalse%29
- https://www.nuffieldtrust.org.uk/sites/default/files/2024-12/Nuffield%20Trust%20briefing%20for%20Assisted%20Dying%20for%20Terminally%20Ill%20Adults%20Bill_WEB_update.pdf