Evidence suggests thousands of dying people get no end-of-life care
Why are so many terminally ill patients left to die without dignity? And should palliative care begin as soon as they’re diagnosed rather than the final weeks? Evidence suggests thousands of dying people receive no end-of-life care at all
An end that is peaceful, pain-free and surrounded by those we love — given the choice, it’s surely how most of us would choose to die.
And since 80 per cent of us will make our exit due to chronic illness (rather than sudden death or accidents), most of us will rely on modern medicine — specifically palliative care — to get us over life’s finishing line in relative comfort.
But what few people realise is that palliative care is much more than simply injecting powerful painkilling medication to ease suffering in the final few days or hours.
In fact, according to the NHS, it is a valuable, life-enhancing service that should be available as soon as a patient gets a terminal diagnosis (even if it might not kill them for many years) — not just during the final stages of life.
But is this being implemented? Worryingly, the evidence suggests that thousands of people in the UK in need of palliative care get none at all — never mind at the earliest possible point when it has the greatest benefit.
What few people realise is that palliative care is much more than simply injecting powerful painkilling medication to ease suffering in the final few days or hours
In fact, according to Baroness Ilora Finlay, a professor of palliative medicine at Cardiff University School of Medicine, around 109,000 people a year miss out on palliative care because there is no proper provision.
That’s despite numerous studies showing that starting palliative care as soon as possible after a terminal diagnosis not only stops many patients from slipping into overwhelming depression and despair, it can even help some survive longer than they had expected.
Far from soothing only crippling pain as someone nears death, good palliative care should also involve providing emotional and psychological support, helping patients plan for the future, tackling loneliness and helping frightened people make the very best of their remaining time.
The number of people in the UK who could benefit from palliative care is projected to increase by up to 42 per cent over the next 20 years as the population ages and improved treatments mean people live longer with serious illnesses.
Yet as far back as 2014, the World Health Organisation said people were missing out on early palliative care because neither health professionals nor the public were really aware of the benefits.
‘Good palliative care can extend someone’s life because if they are enjoying life, they could live longer,’ says Scott Murray, an emeritus professor of primary palliative care at Edinburgh University.
‘The average length of time someone survives a terminal diagnosis is three years. Yet in high-income countries such as the UK, up to 80 per cent of those who die could have benefited from palliative care much earlier in their illness.
‘Hospice care made me a different person’
MAUREEN BONNER-McCASKILL, 43, from Stenhousemuir, near Falkirk, was diagnosed with a rare condition called nonspecific interstitial pneumonitis (NISP) in 2019 — and given the devastating news that she probably only had about a year to live.
NISP affects the tissue that surrounds the tiny air sacs in the lungs.
But after the shock of her diagnosis, things became much less gloomy when Maureen was referred to a local hospice for palliative care.
She says the care she and her husband, Danny — a gas engineer — have received has helped both of them. ‘My illness was so hard for the family but staff found someone Danny could talk to, which has been a weight off his shoulders,’ says Maureen.
NISP affects the tissue that surrounds the tiny air sacs in the lungs. But after the shock of her diagnosis, things became much less gloomy when Maureen was referred to a local hospice for palliative care
She has received ongoing psychological support, plus ten days of specialist in-patient care in February for ‘agonising’ muscle spasms around her lungs, a side-effect of her medication.
‘After just one night, I woke up pain-free,’ she says. ‘I also had massages and they asked what was important to me in life. It’s a lovely approach and I built up confidence about dealing with my condition at home. I’m living with fractured bones in my ribs and spinal compression, but I came out a different person.’
On oxygen round-the-clock to help her breathe, Maureen — whose son, Dylan, 24, has just graduated from university — also has regular watercolour classes with a hospice therapist to help her relax.
‘I’m enjoying living each day as it comes and I’m probably happier than most people,’ she says.
strathcarronhospice.net
‘This is a missed opportunity to do better for patients, families and health services.’
Palliative care has been an informal part of medical practice since the late 1800s, when it was described as helping an ‘easeful death’. But it was only in 1987 that it finally became recognised in the UK as a specialist field of medicine in its own right.
The term covers everything from pain relief and symptom management to tackling social isolation resulting from the diagnosis, involving friends and family in the patient’s care, dealing with what happens when they die and focusing on getting them well enough to relish what’s left of their lives — rather than just counting the days that remain.
Liz Todd, 63, who was diagnosed with terminal lung cancer last year, says her palliative care team has helped her do just that.
A former mother’s help from Stirling in central Scotland, Liz, who is divorced with one daughter, was diagnosed after suffering from ‘excruciating’ lung pain and has had immunotherapy which, it is hoped, will give her another 18 months of life.
Rather than worrying about how much time she has left, she says that the palliative care team at her local hospice has helped her to ‘break everything down about my illness so I looked at it differently.
‘Speaking to them makes me feel lighter,’ she explains. ‘They don’t always focus on the sickness part. It’s about living a decent life while you can.
‘My daughter wanted to fly me here, there and everywhere when I was diagnosed, but I just want to enjoy the everyday.’ In 2015, the Parliamentary Health Service Ombudsman — an independent body that investigates complaints about the NHS — published a report called Dying Without Dignity, a damning indictment of the state of palliative care services, which highlighted the experience of 12 patients who received no proper care during the final stages of their illnesses.
One, a 29-year-old man, dying from cancer was left in agony for more than 11 hours because hospital staff failed to give him effective pain relief.
Another was a 56-year-old woman whose family watched in despair as she suffered unbearable pain because a palliative care team was not available out-of-hours to administer the proper drugs.
The report stated: ‘We see tragic cases where people’s suffering could have been avoided or lessened with the right care and treatment as they approached the end of their lives.
‘The anguish that this causes them and their loved ones is unimaginable.’
The report highlighted failings that meant few dying patients were getting the palliative care they needed. There was also poor symptom control, poor communication between doctors and families and ‘inadequate’ out-of-hours services which meant there was no proper pain control available for sick patients.
The most recent evidence suggests little has changed since.
Marie Curie, a charity for people with terminal illness, recently discovered that in 2021 the average spend on palliative care for people over 65 was as little as £19 a head.
And new research by experts at King’s College London suggests caring for the terminally ill and dying remains a low priority for many of England’s new integrated care bodies — a 42-strong network of organisations that took over running local NHS services from clinical commissioning groups in July.
It found that, of the 23 boards which have published a strategy about improving local health services, only six listed palliative and end-of-life care as a priority.
Professor Finlay told Good Health: ‘The chairman of one board despaired that he couldn’t get people to realise how important palliative care is.
‘It’s tragic that people have distressing symptoms and fears that have never been addressed — people who could have benefited from palliative care and had a good quality of life. The NHS promised to support people from the cradle to the grave, and it should now realise that promise.’
Professor Finlay, who is also a member of the House of Lords, earlier this year helped to push through a crucial amendment on end-of-life care to the Health and Care Act 2022.
The amendment makes it a legal requirement for the NHS to provide palliative care services to patients as early as possible after a terminal diagnosis.
Failure to do so could be highlighted through inspections by the Care Quality Commission — the body which polices standards in hospitals and nursing homes.
What good end-of-life care entails varies from one patient to another — depending on need.
Professor Murray adds: ‘I worked with one patient to produce the palliative care plan he wanted. The year before that, he’d been admitted to hospital ten times (due to complications arising from his diagnosis).
‘In the year following the plan, he wasn’t admitted at all. He wanted to stay at home and take the risk that he might die.’
Studies suggest that repeated emergency admissions, which can be traumatic for desperately sick patients who want to spend as much time with their loved ones as possible, can be prevented if proper palliative care is in place. In lung cancer, for example, research such as one study in the New England Journal of Medicine in 2010, shows intervening sooner rather than later boosts mood and quality of life and, crucially, cuts the amount of very aggressive treatment patients get at a time when they are already extremely fragile.
‘Measures include spotting signs of deterioration (due to the more frequent contact between patient and palliative care team) and helping symptom control,’ says Professor Murray.
‘This prevents emergency hospital admissions and avoids treatment that, in the end, is worse than useless and where the side-effects can overpower the patient. For example, we see a lot of these patients who die within a few weeks of having chemotherapy.’
It’s not just patients who reap the rewards, according to a study from the University of Alabama.
The results, which were first reported at a U.S. cancer conference in 2014, showed that the loved ones of those who are terminally ill with cancer suffer less depression and stress after the death if they themselves have been given access to palliative care and bereavement counselling long before the patient dies.
In the UK, much of the burden of end-of-life care falls upon the 200-plus hospices that each year help more than 200,000 patients through their final days.
They also provide bereavement counselling to 40,000 or so devastated friends and family members. This costs around £600 million a year but the majority of hospices get only around a third of their funding from central government, with the balance raised through donations and fundraising.
During the pandemic, this virtually ground to a halt, depriving many independent hospices of cash to keep funding services. The charity Sue Ryder, one of the UK’s biggest palliative care providers, has repeatedly warned that the system will collapse in future if ministers do not pledge to provide at least 70 per cent of the money needed each year.
One leading provider, Strathcarron Hospice in Stirlingshire, says its running costs this year will exceed £9 million while income will be £8.6 million.
Their income comes from legacies, donations, charity shops and other fundraising.
The hospice has recently introduced changes to make it easier for desperate patients to access its services.
For example, those in its catchment area of 400,000 people no longer need a GP or consultant referral — they can pick up the phone and refer themselves, or a loved one, for assessment.
‘Early palliative care is about getting the best quality of life,’ says Marjory Mackay, director of nursing at Strathcarron Hospice. ‘Hospitals are often just about the illness and they don’t have time to think about what this means for your life, your future and your family. ’
What’s more, she says: ‘If people are lonely and isolated, they will die sooner and less well. Often people avoid those who are very ill because they don’t know what to say.’
Former mechanical engineer Iain Milne, 63, discovered this 20 years ago after he developed primary progressive multiple sclerosis, which leads to increasing disability.
‘A lot of friends didn’t know what to say, so they disappeared; and I went into a depression,’ says Iain, who lives in Cumbernauld, Lanarkshire.
Since the start, he has been relying heavily on the expertise of staff at Strathcarron.
‘I had terrible crushing pains in my legs and the hospice put me on intravenous ketamine (a powerful painkiller) every eight weeks,’ he says.
The hospice also recommended he take up arts and crafts to focus his mind elsewhere.
‘My condition has deteriorated in the past year, but the hospice is in regular contact and has asked me to talk to new patients to help them come to terms with their diagnosis — that’s been powerfully therapeutic for me.’
Professor Murray says it’s more important than ever that palliative care get the resources it needs.
‘It’s critical health care workers offer palliative care routinely, rather than seeing it as an extra,’ he says.
‘Without it, millions of people with terminal illnesses will endure unnecessary suffering.’
Under the microscope
Actress Dame Maureen Lipman, 76, answers our health quiz
Can you run up stairs?
Yes. I ran up the steps in Kensington Park Gardens recently but I felt it. I was out of breath. I also had pain in my left hip from bursitis.
Ever dieted?
I’m 5 ft 6 in and people think of me as slender but that’s because I’ve got a thin head. I was recently told I ought to lose a little weight, to reduce my slightly raised cholesterol levels. During the pandemic, I walked miles then I’d come home and eat like a hog.
Any vices?
I’ve got a sweet tooth — and now I can eat chocolate after 40 years of avoiding it because of migraines. I went to an acupuncturist last year and the migraines disappeared.
Do you pop any pills?
Thyroxine because I’ve developed low thyroid levels. And amlodipine to regulate my raised blood pressure.
Any family ailments?
I’ve inherited a certain neurosis from my mother and what I’d call a forgetful gene from my father. Shortly after marrying my mother, he walked out of a film they were watching and went to play snooker. Later that evening, he forgot he was married and went home to his mother.
Tried alternative remedies?
Constantly. I’m a great fan of homeopathy. I’m currently using CBD oil to help me sleep and I spray my pillows with lavender.
Cope with pain?
When I had migraines, I took Solpadeine. I once had a Bulgarian cleaner who’d make me put a slice of potato on my forehead under a wet flannel and get me to lie down. It didn’t make a blind bit of difference.
Ever had plastic surgery?
No, but I might have the bags under my eyes tidied up. I sometimes watch myself under the harsh lighting of Coronation Street and I can get a bit neurotic about how I look.
Ever had anything removed?
I had two Caesareans for my son and daughter, a hysterectomy and the removal of a neurofibroma (a benign tumour at the top of my spine). Oh, and my tonsils as a child.
What keeps you awake at night?
I can wake at 2am and not get back to sleep until 6am. Perhaps my upcoming play, Rose, will exhaust me sufficiently to sleep through.
How has the pandemic affected you?
I found the release from ambition very soothing.
Any phobias?
Spiders and snakes. I’m also not keen on crows and magpies.
Like to live for ever?
No. The most interesting person I ever met was the photographer Elsbeth Juda, who lived to 103. I’d like to go like she did, having a foot massage and listening to Schubert.
Maureen stars in Rose at the Hope Mill Theatre in Salford from August 30 to September 11 and the Park Theatre, North London, from September 13 to October 15.
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