The NHS is spending a fortune giving people a death they don't want

The UK's National Health Service (NHS) invests a significant amount of money in end-of-life care, but the results often fail to meet patients' needs, raising questions about the effectiveness of the current system. Once hailed as one of the best countries in the world for palliative care, the UK's reputation in this area has diminished considerably. Experts point out that the root of the problem is more complex than just a lack of funding, including systemic issues and coordination challenges.

Terry Riddell is remembered by his friends and family as always being full of laughter. He immigrated to the UK from the Caribbean island of St. Kitts as a child, loved sports, and represented the British junior team in martial arts in the 1970s. Later, he became a father of three, worked as a metal spinner, and enjoyed spending time with his family and friends. However, in 2021, shortly after retiring, everything changed when he was diagnosed with advanced stomach cancer.

Terry's last wish was to die at home, surrounded by his family. However, despite being referred for professional end-of-life care support, he and his partner, Gillian, were largely left to cope on their own in his final months. Apart from medication prescribed by Terry's family doctor and a few visits from community nurses, Gillian said "there was nothing." As Terry's health deteriorated, he was eventually admitted to the hospital, a situation they desperately wanted to avoid. "This wasn't how he wanted to spend his final moments," his partner stated with grief.

Gillian recalled: "I didn't understand why, we kept asking, but it was hard to figure out. I really didn't know what to do, I could only do my best to take care of him. He was in so much pain at times, he would cry out in pain and crawl around. It was so hard and helpless to watch him like that." After a few months, Terry's condition worsened, and he was eventually sent to the hospital. Gillian said: "I slept on a folding bed next to him, doing my best to take care of him." He passed away just over two weeks later, at the age of 67. "This wasn't how he wanted to spend his final moments," she told me today, "I want to see change, so others don't have to go through what we went through."

Terry and Gillian's experience is not an isolated case, and it has become one of the factors in the discussion among British parliamentarians of a bill that would allow terminally ill adults in England and Wales to seek to end their own lives. Some opponents of changing the law have highlighted what they describe as the inadequacy of palliative care – services that provide support at the end of life to control pain and other symptoms. Health Secretary Wes Streeting opposes the bill, warning that people nearing the end of their lives may feel "coerced" due to a lack of better options.

Data from the UK's Office for National Statistics shows that, like Terry, the vast majority of people say they want to die at home, but in reality, only just over a quarter are able to do so. Instead, the most common place of death is in a hospital. It is estimated that at least three-quarters of deaths in the UK each year (approximately 650,000 people) require palliative care. But a recent report by the end-of-life charity Marie Curie shows that in England and Wales, more than one in five of those who need it do not receive any palliative care. Overall, half of families are dissatisfied with the care their loved ones received in their final months.

Dr. Sarah Cox, chair of the Association for Palliative Medicine, said: "Things have changed, we are not getting the funding we need. But it's not just about money, it's about the way services are organized." Of course, there are many reasons why people end up dying in hospitals rather than at home. But experts believe that, in most cases, a lack of palliative care is a key factor. As a result, hospital emergency departments have become a safety net. Marie Curie's report found that in England and Wales, about half of people visited the emergency room at least once in the last three months of their lives, and one in eight stayed in the hospital for 30 days or longer. Moreover, dying in a hospital is not always on a comfortable bed in a ward.

Dr. Rachel Clarke, a hospital palliative care doctor, said she might spend an entire day in the emergency room, trying to care for patients who are dying in resuscitation areas and corridors. "It's just so sad that people end their lives in this way." Professional palliative care is actually provided by different organizations. Dr. Cox said: "People get palliative care from hospitals, community NHS teams, social care agencies and hospices. But families tell us there is a lack of coordination between the different parts of the system. People struggle to get the help they need and end up in hospital." Some experts say that some staff lack the confidence to talk to patients and their families about death.

Terry experienced this situation, as he was taken to the hospital by ambulance two weeks before his death due to cancer-related fluid buildup and never returned home. If he had received better support at home, he likely would not have needed to be hospitalized. Experts say that in addition to the financial pressures facing the NHS, demographic changes, isolated operations of various parts of the system, and misuse of funds have all contributed to the current state of the palliative care system. Moreover, these problems are getting worse every year. In the 30 years leading up to 2011, the number of deaths in the UK had been declining, but this has changed as the population born during the post-World War II baby boom gradually ages. Annual deaths are expected to increase by 12% in the next decade.

If palliative care works well, it can have a significant impact on users. Hospices are the main providers of care, providing support to 300,000 people each year, mainly in the community, not just within their own buildings, contrary to popular belief. St Christopher's Hospice in South London is the UK's oldest hospice service, providing support to more than 1,700 people with terminal illnesses in four London boroughs. It accepts referrals from family doctors, community care teams and hospitals.

Grace Lad, a palliative care nurse, said she provides many types of support to her patients, some of whom have motor neurone disease, Parkinson's disease and liver failure. This includes pain control and care for other physical problems, as well as helping them address psychological and financial needs. "We really build relationships with people," she said. "I've been working with one patient for nearly two years. You want to do everything you can." Most of the people she cares for tell her they want to die at home, she said – but that's only possible if they get the right care.

But many hospice services face financial difficulties. For example, St Christopher's Hospice only receives about a third of its funding from the NHS; the rest comes from fundraising and charitable donations. A parliamentary report warned that the current fundraising approach is unsustainable. Helen King, head of the nursing team at St Christopher's Hospice, said: "Which other healthcare service has to sustain itself in this way?" She pointed out that they are fortunate to have a wealthy local community that can donate generously. "But the fact remains that we get more money from the shops – from selling second-hand clothes – than we get from the government."

The government has recognized that there are problems and has provided an additional £100 million in funding to the industry this year – although hospice services say that this funding will mainly be used to cope with the rising costs they face. As for hospitals providing palliative care, audits show that, for example, four out of ten hospitals do not provide specialist services seven days a week – even though this was set as a national standard in 2004. Dr. Clarke said that in practice, this means that there is no specialist palliative care support from doctors or nurses in the evenings and on weekends, either in person or by phone. "You would never do this to other specialties, such as cardiology or nephrology, so why does this happen to palliative care?"

This situation is exacerbated by the fact that palliative care training is "almost non-existent" for other staff who are bearing the burden, who often lack the confidence to talk to patients and their families about death and prescribe the right medication, she said. "We come to work and find patients are really suffering – pain, shortness of breath, agitation or nausea and vomiting. It cannot be overemphasized how severely under-resourced palliative care services are." Meanwhile, in the community, family doctors are left to pick up the pieces. But Dr. Catherine Millington-Sanders of the Royal College of General Practitioners said that given the "relentless heavy workload" and staff shortages, it is difficult to provide the care patients need, especially home visits. "Families and unpaid carers bear the greatest burden," she said.

More funding would help – but it won't solve all the problems. Earlier this year, the Health Economics Unit and the Nuffield Trust think tank found that a lot of money is spent in the last year of people's lives. The report found that their healthcare cost nearly £12 billion – an average of more than £18,000 for each person who died. However, the vast majority of this £12 billion – 85% – is spent on hospitals and emergency care, rather than community support. In essence, this is a false economy, because getting support in hospitals is often more expensive.

Dr. Sam Royston, director of research and policy at the charity, said the findings largely explain why "too many people die in places they don't want or need to be." He added: "All UK governments must have a clear long-term goal of shifting healthcare spending on people at the end of their lives from hospitals to the community." Dr. Royston believes that simply shifting 20% of the money used to care for dying patients in hospitals would be transformative for community services, as it would double current spending.

Is better coordination the solution? What would a better system look like, according to Dr. Royston? First, more can be done to identify patients' needs before they are admitted to the hospital. He mentioned a service in Bradford called React, which works in the emergency department to identify and assess patients and transfer them to community teams that can support them. A study found that it reduced the average number of unplanned hospital days in the last year of patients' lives from 38 to 18. Dr. Cox said that in order to reduce the number of people going to the hospital in the first place, better coordination of services is needed, given the complexity of support and the diversity of providers.

She said that there needs to be electronic records detailing the wishes of the dying, accessible to health and care staff: "These electronic systems are available in some areas, but not in others," she said. She also believes that providing a central hub or phone line to help people navigate and coordinate care would be transformative. She mentioned the system established in Cambridgeshire between local hospice services, NHS 111 and local ambulance services. It provides people at the end of their lives with 24/7 access to specialist nurses, simply by calling the NHS 111 advice line. Dr. Cox added: "Services like this can have a huge impact, providing equipment, responsive access, and telephone advice and referrals to other services." Both Dr. Cox and Dr. Clarke believe that better training for non-specialists is also essential.

Dr. Clarke added: "My utopia is that you actually don't need a huge amount of specialist palliative care services because everyone is so good at supporting dying patients. If we can support people properly in the community, that would be better for them and would actually cost the NHS less money." She added: "We need to prioritize this – you only die once."