We all die. We all do it once. The end-of-life services in an NHS integrated care system should be the test case to prove the value of the integration reform. If we cannot build a coherent system for something this universal, this predictable, and this emotionally important, then the word "integrated" in Integrated Care Board means nothing.
About 670,000 people die in the UK each year. Of those, 43.5% die in hospitals. 28.7% die at home. The remainder in care homes, nursing homes, and hospices. The NHS states that every citizen has a right to high-quality, personalised end-of-life care. Stating it as a right is not the same as reliably delivering it.
Recently we reviewed the end-of-life provision across a London borough. The many stakeholders included all you would expect: hospital, hospice, primary care, the council, community services. What we found was expected, and disheartening.
Passionate people trapped in silos
The people were proud of the care they provided. They had good ideas. They knew the system wiring was broken. But the passionate and proud people in all the silos also knew they did not provide consistently reliable care, because of handovers, communication interfaces, daily frustrations, and unclear accountability.
The many leaders of the many silos seemed unable, unwilling, or not motivated to agree on much. The hospice CEO could see, feel, and hear the public sector machines grinding everything to dust when there was a hint of progress.
Our analysis laid bare a significant 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 resources as part of a system redesign.
It was worse. The people who tried to make the collection of silos function as a system were the dying and their families. The unprepared family. The fear. The 999 call. The paramedic. The decision that drags the dying on a stretcher, into the back of an ambulance, waiting in the corridor, eventually ending up in an understaffed, noisy ward where the blood pressure will be measured every four hours until the very end.
Why hospitals warehouse the dying
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. A word used by a CEO who recognised that all his organisation was really doing was trapping humans in a building, waiting to get back to a home, a care home, a hospice.
Track every discharge from a DGH from a year ago and the outcomes point to a third dead within twelve months. Less a prediction problem, more a data and decision intelligence issue that could help system decision-makers work with families and the deteriorating person to make better choices.
A hospital that has invested in 26 cardiologists also has just three palliative care consultants. The resource allocation tells you everything about the priorities.
The hospice as the system leader
At STRASYS, the Decision Intelligence engine for healthcare, our approach starts with understanding needs, not defending structures. The Clinical Service Review methodology combines deep data analysis with lived experience to deliver a single version of the truth across all parties involved. In end-of-life, this means mapping resources, quality, and accountability across every silo and asking: are these the right products and services, organised the right way, to meet the needs of the dying citizen and family?
Population Need Segmentation underpins that analysis. Understanding the dying citizen as a consumer with needs, preferences, and behaviours. Not as a patient to be processed through whichever silo happens to pick up the phone at 2am.
The expert in end-of-life is not the GP, not the hospital, and not the care home. It is the hospice sector, built on the legacy of Dame Cicely Saunders and St Christopher's Hospice since 1967. The sector runs on £1.6 billion, of which only about £500 million comes from the taxpayer. It does death very well. It should lead the system redesign.
Naeem Younis, STRASYS CEO, argues that the ICBs should commission the national or 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. The workforce will shift. The money will shift. The dying patient dies where they choose to die. This is what transformation begins to look like.