16 hours ago
10
When Marlene Viggers was told her newly diagnosed cancer was untreatable, she said she wanted to go home to die. “She was the matriarch of the family, she held everything together, and she wanted to have her family all around her,” said Neil Andrews, her son-in-law.
For the next few weeks, until Marlene died in January 2022 at the age of 73, she was given round-the-clock care by her closest relatives supported by Marie Curie, the end of life charity.
“She was in a lot of pain, but she had all the love and care she could hope for. Having us there, holding her hand, in her own home surrounded by the people and things she loved, brought her comfort,” said Andrews.
Marlene was one of a growing number of people dying at home rather than in hospital. The proportion of people in England and Wales who died at home rose by 5.3 percentage points between 2015 and 2024, while the proportion who died in hospital dropped by 4.6 points, according to data given to the Guardian by the Office for National Statistics.
The upward trend spiked during the Covid-19 pandemic. In 2019, 24.4% of deaths were at home. By 2022, it had risen to 28.7%. The proportion has remained above 28% ever since.
“There was a big bump during the pandemic, and the figures haven’t returned to pre-pandemic levels,” said Sam Royston, executive director of research and policy at Marie Curie. “Covid expedited a change that was already happening.”
The pandemic brought many people face to face with death. Between March 2020 and 5 May 2023, when the World Health Organization declared an end to the global health emergency, almost 227,000 people died in the UK with Covid-19 listed as one of the causes on their death certificate. The worst single day was 19 January 2021, when 1,490 people died.
But it was not just the scale of death. Covid restrictions meant large numbers of people died without loved ones by their side. People said agonising goodbyes to mothers, fathers, husbands, wives and others via video calls on devices operated by nursing staff encased in PPE.
People were barred from viewing the bodies of their loved ones, or carrying out rituals important in some faiths such as washing or dressing a body.
Gathering to mourn and share memories at funerals and wakes was suspended. The few relatives permitted to attend a funeral were forbidden from hugging, or even sitting next to one another. Even the monarch was not exempt. Queen Elizabeth, wearing a black face mask, sat alone at the funeral of her husband of 73 years in April 2021.
The pandemic forced many people to confront death. “It made us face the fact that there are some things in the world we can’t control,” said Kate Woodthorpe of the Centre for Death and Society at the University of Bath.
“In western countries, we’ve come to assume we’ll reach our 70s, 80s, 90s. We almost believe that death can be controlled, but it can’t. We can’t cure everything, disease kills people,” she said.
Many people thought more deeply about mortality, and what a “good” or “bad” death might be. A 2021 YouGov survey found that one in four adults said the pandemic had affected how they view death, with most of those saying they were more worried about losing loved ones, and almost half saying they thought about death more.
There was a “striking shift” in people making or updating wills, according to the Law Society. Post-pandemic, funeral directors reported increased interest in non-traditional ceremonies as a celebration of a person’s life. The proportion of no-frills “direct cremations” has shot up from 3% of all funerals in 2019 to 20% in 2023.
Yet, said Laura Davies, who runs A Good Death project at the University of Cambridge, “people still lack the confidence and vocabulary to talk to their families about their end-of-life wishes and to understand what their options are”.
According to Marie Curie’s Royston, surveys have shown that if you ask people where they would prefer to die, about 56% opt for home and only about 6% express a preference for hospital. But in 2024, ONS figures showed that almost 43% of deaths occurred in hospitals.
“A lot more people want to die at home than get to die at home. And a lot more people die in hospitals than would choose to do so,” he said.
People generally do not want to spend their last days in an overcrowded, busy and impersonal ward. “They want to be able to maintain dignity and self-respect, surrounded by loved ones in a familiar place. These are things more easily found at home.”
Research published last month from the Nuffield Trust and the Health Economics Unit showed, however, that 81% of the £11.7bn spent in the UK on health needs for people in the last year of their life went on hospital care. Less than a fifth of the total is spent on primary, community and hospice care.
Royston said: “People are taken into hospital at the end of their life when this could be avoided with better resourcing of health care in the community. Some people absolutely have to be in hospitals, but we’re not providing community care to keep people at home where we can.
“There is a particular issue with out-of-hours care. If someone is in unbearable pain in the middle of the night with no specialist support, what their families do in reality is call 999 and the person ends up in hospital. With better out-of-hours provision, an awful lot of hospital admissions could be avoided.”
The overall amount of funding was not the issue, he said. “We don’t need more money, we need to be better at spending it.”
Gillian Holtom certainly could have used better specialist help when her partner, Terry Leader, found he had terminal stomach cancer after being unable to see his GP during the pandemic. Terry wanted to die at home, but Holtom had little support in a distressing and stressful situation.
“You find yourself Googling ‘how to care for someone dying of stomach cancer’. It was a miserable few weeks and Terry was in a lot of pain. I remember desperately trying to get help but not getting anywhere, which made me feel very helpless a lot of the time,” said Holtom.
In the end, Terry was admitted to hospital. Holtom refused to leave him for nine days until he died on 22 June 2021, aged 67. “I feel like I let him down,” said Holtom.
Terry’s final weeks between a very late diagnosis and death were “brutally handled” by their local hospital, said Holtom. According to Davies from The Good Death Project, a growing lack of confidence in the NHS may be a contributory factor in more people wanting to die at home.
“The impact of the experience of the pandemic combined with images of people being treated in hospital corridors just a few years later may make people more keen on a home death,” she said.
Woodthorpe said: “People are still very supportive of the NHS, but confidence in it has taken a battering.”
The challenges are likely to accelerate as demographic changes mean the need for palliative care will increase by 25% by 2048, according to Marie Curie. The vast majority – an estimated 75%-90% – of home-based end-of-life care is provided by unpaid carers, usually family members.
After helping to care at home for his mother-in-law in the last weeks of her life, Neil Andrews did the same for his mother, Anne, 11 months later.
“Regardless of our values or beliefs or religion, we all want to pass with our dignity intact, with minimum pain, and with someone you love holding your hand,” he said. “There was a beautiful moment just before my mother died, when the night nurse opened the window to let her spirit out. Would that happen in a hospital?”
