Warnings over continuing inadequate end of life care in the UK

News reported yesterday (17.02.2026) that “one in three people in England -170 000 people a year – die in pain and distress or without the basic care they need”[1] and that by 2050 the number could rise to 212 000, despite evidence that the right care could help them, sadly resonates with our own experience.

Although it is now more than twelve years since my husband died, what happened to him was a travesty of so called “care in the community” at the time.

As a man in his eighties his medical conditions had become multi-faceted, each one requiring specialist treatment, but there was virtually no communication within the same hospital regarding treatment in different departments.  This meant that he underwent sixteen emergency ambulance admissions to hospital in the last eighteen months of his life, each one involving subsequent admission.  Several of these could have been avoided if communication between agencies and departments involved had simply provided better and more consistent after-care.  At one stage he waited fourteen weeks before being contacted following urgent referral to the rapid pain relief team.

He was referred to palliative care several months before his death and this team was the first to try to provide some relief for pain and severe breathing difficulties, but due to the acute nature of some of his medical emergencies, he often had to be referred back to the specialist services.  Here it was the “system” rather than individual professionals that let him down.

If there was no further treatment for a developing condition, he was simply discharged.    If this occurred at the end of a week there was often a delay of several days before notes were passed on to his GP and a district nurse would visit.  Help in the form of intermediate care at home was patchy at best and had to be re-evaluated every few weeks.  If there had been another hospital admission in the interim, the lengthy period of re-assessment had to start again each time he was discharged with a new set of carers arriving for a couple of weeks.  This was just the frustrating and exhausting part of the process.

The most distressing part was the family’s inability to help or relieve suffering in his final weeks.  Wracked with pain from cancer and increasingly unable to breathe at night due to heart failure, there was nothing we could do to assist his breathing.  Oxygen was not provided at home.  On one occasion district nurses arrived with a nebuliser but when asked to administer it, they said they were not allowed to do this as they had not been written up to do so, but I could.   Two district nurses spent two hours filling in a form to assess whether his condition was eligible for more care at home, only to be told that he was two points below the criteria for more support.  He died two weeks later.

It was only in his last two weeks at home that I was informed that we could have had Marie Curie nurses at night to help with night-time care enabling me to sleep through the night.  It was one of these wonderful nurses who agreed with me that no one should be allowed to endure each night as he was, and he was admitted to our local hospice for the last ten days of his life.

Here the quality of care was of a completely different nature to the health service.  Patient comfort, care and dignity were the priorities as well as including the family in every aspect of his final care.  He and we were lucky to access this at the very end, but even with this exemplary level of care the final days were drawn out, painful and distressing.

Several weeks after his death I chronicled the history of the last eighteen months of life and sent a copy to all the healthcare agencies that had been involved in his care, not as a complaint, but as an illustration of what went wrong.  There was an immediate response – one from a local GP (not his) saying that she had cried when she read the story – as she had thought that local GP’s had worked very hard to improve the quality of end of life care; there was an informal enquiry and a reflective review at the hospital where we discussed what could have been done to improve our experience and that of others in the future.  The will to improve processes was there, but twelve years on, I fear little has changed.

The healthcare system is set up and financed to diagnose, treat and discharge.  I was astonished when I spoke to his GP at some length following the reflective review when he confessed to me that he felt professionally impotent and embarrassed when faced with patients he could no longer treat.    I told him that I had always believed Medicine is about more than healing; relief of suffering and ongoing care must be an equally important part of every doctor’s role.  When this is not available, end of life patients fall on to the accident and emergency services which provide the worst possible environment for the dying who are sometimes left in draughty corridors on trolleys to die alone.

In a postscript to a book due to be published later this year I point out how the hospice service delivers a different way.

“I cannot praise too highly what this service provides, not only to patients in their final days, but increasingly support through a range of day care facilities and pain management to those living with life limiting illnesses. Some hospices also offer bereavement services; one offers walking groups, children's groups, WhatsApp groups, counselling, children's counselling, and the bereaved are contacted for up to three years and invited to all bereavement events and services. This service relies heavily on donations and fund raising to carry out its essential and invaluable work.  Despite this, in my view, it is the gold standard of care for the thousands of patients for whom the health service can do no more.  In an ideal world, what the hospice service provides should be an exemplary division of the National Health Service.   According to a hospice staff member,

“Hospices are working hard to change the social stigma surrounding them and to educate GPs on referrals and getting people to us earlier. The largest part of our work is our Day Services. So, seeing people weekly to give them physical and emotional support plus pain management, so that they can go home and be well for longer. This is the lesser-known part of the hospice. But again, it's all down to funding. The more NHS funding, the more people we can get to and critically, earlier.”[2]

Dying is a twenty-four/seven process.  It does not respect working hours, practises or systems but requires principles that put human dignity and patient need first.

[1]  McFadden B. I newspaper 10.02.2026.  Warning over lack of basic care close to death.

[2]  Blythe S, 2026. Because you were there.  Austin Macauley Publishers Ltd.  Due to be published 2026.