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

The UK was once ranked the best country in the world for end-of-life care - but that's not the case any longer. And according to experts, the problem runs far deeper than money

The people closest to Terry Leader remember him as a man who was always laughing. He emigrated to the UK from the Caribbean island of St Kitts as a child, and was sporty, representing the junior Great Britain martial arts team in the 1970s.

Later he became a father of three and worked as a metal spinner and enjoyed spending time with friends and family. Then in 2021, shortly after he retired, everything changed. Terry discovered he had terminal stomach cancer.

His final wish was to die at home, surrounded by family. But despite being referred for specialist end-of-life care support, Terry and Gillian, his partner of 27 years, were left to navigate his final months largely alone.

Apart from medication from Terry's GP and a couple of visits from district nurses, "there was nothing", says Gillian.

"I couldn't understand why – we kept asking but it was hard to get to the bottom of it. I really didn't know what to do and was doing my best to care for him."

"He was in agony at times – crying out in pain and crawling around. It was so difficult to watch and feel helpless."

As the months passed, Terry deteriorated and was eventually taken to hospital. "I slept on a Z-bed bed next to him, trying my best to look after him," says Gillian.

He died just over two weeks later. He was 67.

"It was not how he wanted to spend his last days," she tells me today. "I want to see changes so others do not have to go through what we did."

Terry and Gillian's story is far from unique – and this has become a factor as MPs debate 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 inadequate state of palliative care - the services that provide support at the end of life to manage pain and other symptoms.

Health Secretary Wes Streeting, who is against the bill, has warned that people nearing the end of their lives may feel "coerced" by a lack of better alternatives.

Like Terry, the overwhelming majority of people say they would like to die at home, Office for National Statistics figures suggest, but in reality just over a quarter do. Instead, the most common place of death is in hospital.

It is estimated that at least three-quarters of the 650,000 people who die every year in the UK require palliative care. But a recent report by end-of-life charity Marie Curie suggested more than a fifth of those who need it in England and Wales do not receive any.

And overall, half of families said they were unhappy about the care their loved ones receive in their final months.

But this hasn't always been the case - until recently the picture was very different.

As recently as 2015, the UK was ranked the best country in the world for end-of-life care by the Economist Intelligence Unit. However, Association for Palliative Medicine president Dr Sarah Cox says: "That's not the case any longer. We're not getting the funding we need. But it is not just about money – it is the way services are organised."

There are many reasons people end up dying in hospital when they would have preferred to have done so at home. Palliative care staff I have spoken say when people are in their final weeks some decide they need to go to hospital as they become frightened or do not want to be a burden on their loved ones, while in other cases families believe that being in hospital will help prolong their relative's life.

But, ultimately, the lack of palliative care is thought to be the crucial factor in most cases, experts say. And so accident and emergency departments in hospitals become the safety net.

The Marie Curie report found around half of people in England and Wales end up going to A&E at least once in their final three months, and one in eight spend 30 days or more in hospital. And a hospital death is not always in the relative comfort of a bed on a ward.

Hospital palliative care doctor Dr Rachel Clarke says she can spend whole days in A&E trying her best to care for patients dying in resuscitation areas and in corridors. "It's a travesty people end their lives like that."

Specialist palliative care is actually provided by a range of different organisations. "People receive it from hospitals, from community NHS teams, from social care and from hospices," says Dr Cox.

"But families tell us that 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."

This is exactly what happened to Terry, who was rushed to hospital in an ambulance because of a fluid build-up related to his cancer two weeks before he died and never returned home. With better support at home, it is quite possible he would never have needed to be admitted.

On top of the financial pressures felt by the rest of the NHS, experts say that a combination of demographic changes, different parts of the system acting in isolation and cash being spent in the wrong places have all brought the palliative care system to this point.

And the problems are becoming more acute each year. For the 30 years up to 2011, the number of people dying in the UK was falling but that has changed as the people born during the boom in births following World War Two have grown old. Over the next decade, the number of deaths a year is expected to increase by 12%.

Where it works well, palliative care makes all the difference to those who use it. Hospices are a major provider of care, supporting 300,000 people a year - mainly in the community, not just inside their own buildings, contrary to popular belief.

St Christopher's Hospice in south London is helping more than 1,700 people with terminal illnesses across five London boroughs. It receives referrals from GPs, district nursing teams and hospitals.

Palliative care nurse Grace Larder says she provides many types of support to her patients, who have a range of conditions from motor neurone disease and Parkinson's to liver failure. This includes pain control and care for other physical problems, along with helping them with psychological and financial needs.

"We really develop relationships with people," she says. "There's one patient I've been working with for nearly two years. You want to do your best."

Most people she cares for tell her that they want to die at home, she says – but that's only possible if they get the right care.

But many hospice services are in financial difficulties. Only around a third of St Christopher's funding comes from the NHS; the rest comes from fundraising and charitable donations.

Any drugs the hospice provides has to come from their own funds too so they try to anticipate what their patients will need in advance and work with the patient's GP to have them prescribed on the NHS.

A parliamentary report warned the current approach to funding is not sustainable.

"What other health service has to get by like that?" says Helen King, who manages the team of nurses at St Christopher's. She points out that they are fortunate to have an affluent local community that donates generously.

"[But] the fact remains we get more money from our shops - from selling second-hand clothing - than we do from the government."

The government has recognised there is a problem and provided an extra £100m of funding this year to the sector – although hospice services have said this will mostly go on the rising costs they are facing.

As for hospitals offering palliative care, audits show that four in 10 hospitals, for example, do not have specialist services available seven days a week - despite this having been set as a national standard in 2004.

In practice, that means there is no specialist palliative care support from doctors or nurses available during evenings and weekends either in person or on-call, says Dr Clarke. "You would never have that for other specialities like cardiology or renal so why should it happen for palliative care?"

This is compounded by the fact that palliative care training is "virtually non-existent" for the other staff who pick up the burden, who often lack the confidence to speak to patients and families about dying and prescribe the right drugs, she says.

"We will come into work and find patients really suffering – in pain, breathless, agitated or with nausea and vomiting. It is hard to over-state how lamentably badly-resourced palliative care services are."

Meanwhile, in the community, GPs are left to pick up the pieces. But Dr Catherine Millington-Sanders from the Royal College of General Practicioners says that, given an "unrelenting workload" and staffing shortages, it is difficult to provide the care patients need, particularly home visits.

"Families and unpaid carers bear the brunt," she says.

So what is the solution? More money would help, but it wouldn't fix everything.

Earlier this year the Health Economics Unit and Nuffield Trust think-tank found that plenty was being spent on people in the final year of their life. Nearly £12bn was going on their healthcare, the report found – that works out at in excess of £18,000 per person for everyone who dies.

But the overwhelming majority of that £12bn – 85% - goes on hospitals and emergency care, rather than support in the community.

It is, essentially, a false economy, as support in hospital tends to be more expensive.

Dr Sam Royston, executive director of research at the charity, says these findings go a long way to explaining why "too many people are dying in places where they don't want or need to be".

He adds: "There must be a clear long-term ambition for all UK governments to shift health expenditure on people at the end of life from hospital to community."

According to Dr Royston, just shifting 20% of the money spent caring for dying people in hospital would be transformative for community services as it would double current spending.

What would a better system look like? First of all, more could be done to identify people's needs before they are admitted to hospital, Dr Royston believes.

He points to a service in Bradford called React which works in emergency departments to identify and assess patients and diverting them towards teams in the community who can support them instead.

A study found it reduced average unplanned bed days in patients' final year of life from 38 to 18.

But to reduce the number of people going to hospital in the first place, there needs to be greater co-ordination of services too, given the complexity of support and variety of providers, says Dr Cox.

She says there need to be electronic records that detail the wishes of people who are at the end of life that health and care staff can access: "These electronic systems are available in some areas but not others," she says.

She also argues providing a central hub or phone line to help people navigate and coordinate care would be transformational.

She points to a system that has been set up in Cambridgeshire between a local hospice service, NHS 111 and the local ambulance service. It provides people at the end of their life with access to a specialist nurse 24 hours a day, simply by calling the NHS 111 advice line.

"A service like this can make a huge difference, providing equipment, responsive visits as well as telephone advice and signposting to other services," adds Dr Cox.

And better training for non-specialist staff is also essential, Dr Cox and Dr Clarke agree.

"My utopia would be that you don't actually need lots of specialist palliative care services because everybody is so good at supporting patients at the end of life," adds Dr Clarke.

"If we were able to support people in the community properly, it would be better for them and would actually cost the NHS less."

She adds: "We need to prioritise this - you only die once."

Top image credit: Getty Images