As A Palliative Care Specialist, I’ve Witnessed The Human Tragedy Of Our End-of-life Care Crisis | Rachel Clarke

A baby, successful Britain, successful 2025, takes its stuttering last breaths. All deaths successful infancy are harrowing. But nan truth that this peculiar decease mightiness person been prevented – had neonatal attraction not depended truthful heavy connected charity, had nan NHS not grounded to money much than two-thirds of nan healthcare babies request – is unforgivable.

Mercifully, nan dystopian script I’ve conscionable described does not beryllium successful nan UK today. Although paediatric attraction is undeniably overstretched, it is astatine slightest regarded arsenic a core, bedrock NHS service.

We would ne'er tolerate a authorities that chose to defund astir neonatal services, gambling alternatively that charities would enactment to capable nan gap. Yet this is precisely nan business faced by group needing end-of-life care. Remarkably, nan famously “cradle to grave” NHS costs only about 30% of hospice attraction successful nan UK. The shortfall is made up from charitable donations: nan goodwill of section individuals and businesses stepping successful wherever nan authorities has chosen to locomotion away.

As past week’s National Audit Office study demonstrated, nan financial authorities of nan hospice sector is dire. Two-thirds of big hospices successful England recorded a shortage successful 2023-24. Across nan country, hospices are being forced to cut staff, trim their furniture numbers and slash organization services for dying group who wish to beryllium cared for astatine home. The consequence is simply a postcode lottery of attraction successful which your chances of receiving high-quality palliative attraction hinge connected variables that see nan level of deprivation wherever you unrecorded and nan grade to which your section NHS guidance chooses to prioritise patients pinch terminal illnesses. A period ago, for example, Arthur Rank Hospice successful Cambridgeshire revealed that Cambridge University Hospitals had elected to retreat £829,000 of yearly funding, forcing nan hospice to adjacent 9 of its 21 beds. “Essentially, this now intends that complete 200 group a twelvemonth will nary longer person nan action of being cared for successful nan comfortableness of our hospice and alternatively will sadly beryllium dying successful a engaged hospital,” Arthur Rank’s CEO, Sharon Allen, stated. The NHS spot responded by saying that nan hospice beds were “very mediocre worth for money”.

For me, a infirmary palliative attraction specialist, absurd backing statistic return connected daily, indelible form. There is nan look of nan aged veteran, coiled for illustration a comma connected a trolley, who had hoped to extremity his days successful a hospice, but was diverted to a crisis-stricken A&E instead. There is nan family whose hopes I dash yet again erstwhile I say, “I’m truthful sorry, location are still nary beds astatine nan hospice.” There are soiled sheets, unvoiced fears, missed doses of morphine. The difficult truth, successful short, astir underfunding palliative attraction is that group who are astatine their astir susceptible – nan dying – suffer much pain, much indignity, little prime and little autonomy than they mightiness have. It intends that suffering astatine nan extremity of life takes 2 forms: an inescapable portion and an avoidable part, nan second being nan merchandise not of illness but of governmental choices.

Why do we let this? We are not a sadistic nation. As individuals and collectively we are tin of startling acts of kindness and compassion. In 2022, we threw unfastened our doors successful our thousands to induce Ukrainians fleeing Russian troops into our homes. Two years earlier that, erstwhile nan Covid pandemic took hold, our streets hummed pinch grassroots activism arsenic we rallied to support aged group and susceptible neighbours. The BBC’s yearly Children successful Need entreaty often raises about £50m. Some of america will take to donate a kidney to a personification we’ve ne'er met before.

For each nan section and acts of self-interest and hate, Britain is decent and caring too. Most people, astir of nan time, effort their flawed champion to beryllium good. So why, erstwhile it comes to caring for our dying, do we move this corporate unsighted eye?

Death whitethorn beryllium arsenic inescapable arsenic birth, arsenic inevitable arsenic gravity, yet it is besides steeped successful fear. Once a domestic, friendly matter – successful Victorian England, for example, nan immense mostly of deaths happened astatine location – modern dying is simply a mostly organization phenomenon. In England today, little than a 3rd of deaths return spot astatine home, nan remainder occurring successful hospitals, attraction homes aliases – a specified 5% of them – successful hospices. The rhythms, stages and rituals of dying person go alien and unfamiliar. And we thin not to dwell connected things that frighten us, opting alternatively to dress that they whitethorn ne'er happen.

I sympathise pinch each of this. Two decades ago, I spent nights on-call arsenic a infirmary location serviceman who dreaded being summoned to nan bedside of a diligent successful nan on-site hospice. To maine astatine that time, decease felt otherworldly and dreadful. Yet dying is, of course, 1 of nan only experiences that each of us, without exception, will stock – arsenic earthy arsenic it is necessary. For ourselves, our parents, our children, our friends. For about 580,000 of america each year successful England and Wales. That’s 3 aliases 4 much group who person taken their past breaths successful nan clip you’ve taken to publication this article.

If we awkward distant from confronting our mortality, we tally nan consequence of doing an immense, unintended disservice to those who are approaching nan extremity of their lives. Closed hearts and closed minds cannot empathise. Our reluctance to ideate nan deathbed constitutes a obstruction betwixt ourselves and nan dying. It permits nan avoidable suffering astatine nan extremity of life that successive governments, some Conservative and Labour, perpetuate by failing to money palliative attraction decently – a truth we should each beryllium up successful arms over.

If ever location were a clip to speak out, it is now. Not only is request for palliative attraction projected to increase by much than 25% by 2048, but Kim Leadbeater’s assisted dying bill is moving its measurement done nan House of Lords. On some sides of that fraught parliamentary debate, politicians person rightly been unanimous successful their insistence that high-quality palliative attraction should beryllium disposable to anyone considering assisted dying. Yet ample numbers of group – about 150,000 of them a year – are already incapable to entree nan palliative attraction they need. The progressively indebted hospice assemblage simply cannot header pinch demand. This raises a dystopian imaginable each of its ain – that group whitethorn consciousness compelled to judge assistance successful dying because they cannot entree nan palliative attraction that mightiness make life still worthy living.

These are matters of nan utmost seriousness. Perhaps nan worst thing, then, astir nan government’s consequence to last week’s report was its glibness: “We recognise location is much to do, and we are exploring really we tin amended nan access, value and sustainability of all-age palliative attraction and extremity of life attraction successful statement pinch nan 10-year wellness plan.”

I’ve publication nan NHS 10-Year Plan for England from screen to cover. Guess really galore times nan connection “palliative” appears? Once. Just once. Warm words simply don’t trim it.

• Dr Rachel Clarke is an NHS master successful palliative medicine and nan victor of nan 2025 Women’s prize for nonfiction