Elderly patients are still given ‘Do Not Resuscitate’ orders against their or their families’ wishes

A knock on the door was the first time Lucy Jeal realised the National Health Service had plans for her death.

She had just enjoyed an early lunch of two lamb chops and roast potatoes when she was disturbed by the unexpected visitor soon after midday.

She got up from her favourite chair to let a man she had never seen before into her three-bedroom South London council flat.

Recalling the moment this week, she explained: ‘He was a local nurse who wanted to talk about my future health care.

‘He said that I should not be brought back to life if my heart failed me. I felt the NHS wanted to put me to sleep.’

Lucy Jeal, 93, was sent an A4 size notice, pictured,  which stated that she would not be resuscitated if her heart stops

Lucy, at 93, was upset when the man left after just over an hour. She shed a tear as she busily knitted her great-grandson a cardigan with a complicated cable stitch that afternoon.

Yet worse was coming. The next morning a brown envelope dropped through her letter box. Lucy opened it to find an A4 size notice, with a stark red border.

It stated that she should not be resuscitated by doctors, nurses, emergency paramedics or ambulance crews if her heart stops.

The alarming notice — designed to be placed on display in her home — was signed by the same nurse, a ‘frailty nursing practitioner’, who had made the surprise visit to her. She told me: ‘I was shocked the NHS won’t save me. If I collapse, they are refusing to put me together again.

‘I felt like putting on my coat that minute and throwing myself over Lambeth Bridge into the Thames.’ It was only the thought of her two sons, Raymond and Stephen, her grandchildren and great-grandchildren that stopped her doing such a terrible thing.

The alarming notice — designed to be placed on display in her home — was signed by the same nurse, a 'frailty nursing practitioner', who had made the surprise visit to Lucy.

The alarming notice — designed to be placed on display in her home — was signed by the same nurse, a ‘frailty nursing practitioner’, who had made the surprise visit to Lucy. 

Lucy is a remarkable person. She goes out to get the newspaper from the local store every morning at eight. Often, she walks or catches the bus to buy her favourite lamb chops at Tesco in Kennington, just over a mile away.

And it is a rare afternoon when she does not step out again, travelling at some speed along the pavements with her four-wheel shopping trolley.

Her active life is recorded in an NHS letter sent with the red-bordered poster which is officially named a DNAR (Do Not Attempt Resuscitation) order.

The letter says that Lucy takes regular walks, has no problem with falls, lives independently, has not lost weight, enjoys reading and knitting, has a good memory, and is visited often by her supportive family.

Signed by the nurse and an elderly care consultant at nearby Guy’s and St Thomas’ hospital, the letter adds that she has a number of ailments entirely common in old people.

They include Type 2 diabetes, controlled with pills which she remembers to take. She is also slightly deaf, using one hearing aid in her right ear to answer the phone, and has cataracts, rheumatism, and thinning bones, although her blood pressure is normal for her age group.

The same letter says that, on the NHS’s clinical frailty scale of one (very fit) to nine (terminally ill) used to assess the elderly by nurses, she scores a three.

Lucy appears to have been caught up in a new project by the NHS to help those who are over-65 and living at home. Pictured: Lucy knits her great grand child a cardigan

Lucy appears to have been caught up in a new project by the NHS to help those who are over-65 and living at home. Pictured: Lucy knits her great grand child a cardigan

According to the NHS website, this means that Lucy is: ‘Managing Well: People whose medical problems are well controlled, but are not regularly active beyond routine walking’.

Which raises the question: why on earth was this sprightly, contented old lady given a no-resuscitation order? The letter explains that following Lucy’s ‘Frailty Review’, it was decided that: ‘Should her heart stop beating naturally, CPR (cardiopulmonary resuscitation) will not be initiated because this would not be in her best interest’,

Lucy appears to have been caught up in a new project by the NHS to help those who are over-65 and living at home. As part of this, the age group are encouraged to make early decisions about their ‘advanced care’ — an NHS euphemism for end-of-life treatment.

The initiative follows the scrapping of the Liverpool Care Pathway (LCP), a controversial ‘last days’ programme pioneered by the NHS, but phased out in 2014 amid fury from families who complained their loved ones were dying in distress after water was deliberately denied them to hasten their demise.

The NHS says geriatric medicine is now the largest of any hospital specialty in England. Soon the NHS, according to its own website, hopes to have ‘frailty’ experts in every major A&E department. Teams of frailty nursing practitioners now work alongside doctors in the community to search out those deemed to need assessment.

Lucy told me clearly that she never agreed to the DNAR and the order which, the letter says, was also sent to her GP. She said it was issued against her wishes.

Lucy told me clearly that she never agreed to the DNAR and the order which, the letter says, was also sent to her GP. She said it was issued against her wishes.

Lucy holds up the finished cardigan she knitted for her great grandchild

Lucy holds up the finished cardigan she knitted for her great grandchild

The NHS in England is the first health service in the world to tackle frailty in this way across the entire older population. It is compiling a national index recording and scoring individual frailty levels to go on their medical records.

Every GP surgery was told by the NHS two years ago to make frailty a top priority. According to the Royal College of Nursing, an older person is likely to be frail if they suffer from ‘unintentional weight loss, feelings of exhaustion, weakness, a slow walking speed and low levels of physical activity’.

This spreads the net far and wide. A tenth of the country’s 12 million people aged 65 or over apparently live with frailty. Among the over 85s, the figure rises to 50 per cent.

The NHS frailty project is doubtless well-intentioned. However, alarm bells are sounding about the widespread application of DNARs among the elderly.

An urgent investigation is already under way into their ‘blanket use’ in care homes during the first Covid-19 wave earlier this year.

This probe by the Care Quality Commission, the Government-appointed health watchdog, follows family complaints about the orders being given in ‘batches’ to care-home residents by some doctors.

Two weeks ago, the Commission expanded ‘at pace’ the investigation to include no-resuscitation orders in local NHS services, which covers the elderly living at home.

Checks on such individuals’ frailty often include a comprehensive geriatric assessment (CGA), followed by the issue of a DNAR order. Which is precisely what happened to Lucy.

The letter that came with the red-lined notice records the unfortunate visit by the frailty nurse practitioner.

It clearly states he visited to do a frailty review of her. It records that he also conducted the CGA and talked to her about an ‘advanced care plan’ for treatment at the end of her life.

The letter adds that he told Lucy he was going to issue a no-resuscitation order, but does not explain her reaction to this decision.

Elderly people feel they are being pressured into signing 'do not resuscitate' forms, charities have warned

Elderly people feel they are being pressured into signing ‘do not resuscitate’ forms, charities have warned

She says her response to him was clear. ‘I told him I never even talk about how I am going to die to my two sons, nor they to me’, she explained this week. ‘So why would I wish to discuss it with him?’ She told me clearly that she never agreed to the DNAR and the order which, the letter says, was also sent to her GP. She said it was issued against her wishes.

When I asked the charity Care Not Killing — which campaigns against euthanasia — for their views, a spokesman quoted a doctor who warned: ‘What you are describing here might be evidence of bad practice regarding frailty, as we saw with the Liverpool Care Pathway.’

At Age UK, which campaigns for the elderly, director Caroline Abrahams added: ‘We have heard worrying reports about older people sometimes being pushed into endorsing a Do Not Attempt Resuscitation order against their wishes. NHS England makes it clear this is unacceptable.

‘There is no excuse for over- riding an older person’s rights. Many want time to think this really important decision over with doctors and those closest to them’.

And the British Geriatrics Society said: ‘We are concerned that such forms have been sent to older people . . . without proper consultation and irrespective of their personal circumstances or wishes. They should be used in the context of a compassionate conversation, including them, their families, and health professionals about what they wish if their condition declines.’

At Age UK, which campaigns for the elderly, director Caroline Abrahams added: 'We have heard worrying reports about older people sometimes being pushed into endorsing a Do Not Attempt Resuscitation order against their wishes. NHS England makes it clear this is unacceptable.'

At Age UK, which campaigns for the elderly, director Caroline Abrahams added: ‘We have heard worrying reports about older people sometimes being pushed into endorsing a Do Not Attempt Resuscitation order against their wishes. NHS England makes it clear this is unacceptable.’

But that appears to be the opposite of what happened to Lucy on Monday, September 28, this year. On the DNAR notice it says it has been issued because of her ‘frailty’ and also ‘co-morbidities’ — a medical term meaning, simply, more than one ailment simultaneously. It is ‘valid’ in her home, out in the community and if she is taken to hospital.

Lucy insists that the nurse did not give her a physical test, such as walking from her chair to the door, or ask her to fill in a questionnaire, key components of alternative, more detailed, frailty assessments.

She said, indignantly: ‘He disappeared from my sitting room during our conversation. I couldn’t see where, but in the letter he said I have a three-wheel walker, that I do not use, in my bedroom down two sets of stairs. He went in there without my permission.’

After his visit, the nurse practitioner phoned Lucy’s younger son Stephen, a London taxi driver in his 60s from Epsom, Surrey, to tell him the DNAR notice and accompanying letter was to be posted to his mother. Seen by the Mail, it states clearly: ‘Informed son Stephen.’

Lucy’s elder son, 66-year-old Raymond explained: ‘Stephen got a call out of the blue from the frailty nurse. He thought Lucy had agreed to no resuscitation so he didn’t interfere.’ But when Lucy rang Raymond herself about the DNAR he was stunned. ‘It was upsetting for her, but our family too,’ said the recently retired postal worker at his home in Maidstone, Kent.

‘It is frightening that she is being refused medical help if her heart stopped.’

‘My mum goes out every day. She can tell you what happened yesterday, or three years ago, or in World War II. There is nothing wrong with her brain. When the great-grandchildren visit, she gets down on the floor to play with them.’

Lucy insists that the nurse did not give her a physical test, such as walking from her chair to the door, or ask her to fill in a questionnaire, key components of alternative, more detailed, frailty assessments

Lucy insists that the nurse did not give her a physical test, such as walking from her chair to the door, or ask her to fill in a questionnaire, key components of alternative, more detailed, frailty assessments

Raymond, who went to London to see Lucy’s DNAR order, insisted: ‘She says she never agreed to it. I view this as a kind of euthanasia of the elderly.’

His wife, Chris, 65, is equally worried. ‘The letter with the order cannot be misunderstood. It means if she is facing death suddenly from heart failure she would not be helped.’

Today Lucy is bearing up with South London humour. When I visited, I found her walking to the Iceland store to buy a cream cake for me. I had to run to stop her making the trip.

As we returned she held the heavy doors to her block to let me in. The only sign of frailty came when she later struggled to pull off the sticky cover on the top of a milk carton for my cup of tea.

With clarity, she recalled being evacuated to Devon during World War II, with sister Esther and two brothers, one just five.

‘The son of the farm family we were sent to kissed his girlfriend as he milked the cows. Esther and me, we giggled. My mother and father, who was ‘in the print’ and worked nights for the News Chronicle, raised the money for the train tickets to bring us back.’

More stories poured out: learning tap dancing as a child, watching the bombs still raining down in London when she returned from evacuation, the Nazi destruction of the family home and her first job sewing ‘over-the-wrist gloves’ for British troops in a factory at just 15.

She has only been abroad once in her life, with a special day passport, to go with her sons to France on the ferry.

The NHS frailty project in Lucy’s area was given front page coverage this summer in the Guy’s and St Thomas’ hospital magazine under the comforting headline ‘No Place Like Home’.

The NHS frailty project in Lucy's area was given front page coverage this summer in the Guy's and St Thomas' hospital (pictured) magazine under the comforting headline 'No Place Like Home' (file photo)

The NHS frailty project in Lucy’s area was given front page coverage this summer in the Guy’s and St Thomas’ hospital (pictured) magazine under the comforting headline ‘No Place Like Home’ (file photo)

The accompanying article says 120 elderly people in the hospital’s area are being helped to stay at home and ‘make early decisions’ about their advanced care.

It quotes the frailty nurse practitioner saying: ‘We are pro-active about seeing patients in their own home. It is not only about assessing patients right now, but putting plans in place so everyone knows about what they want to happen longer term.’

Raymond has called the nurse to complain about the order being given to Lucy. ‘He made me believe that it was routine to hand out these notices. The family wants to find out why she got one against her, and our, wishes,’ he said.

I also rang the nurse to ask him about the DNAR. He refused to comment on home visits to individual elderly people.

At Guy’s and St Thomas’ Hospital, a spokesman said: ‘We know conversations which include thinking about and planning ahead for future illness can be difficult. That is why we try to have these discussions at an early stage and with patients in their own homes where possible.’ The spokesman said that, following her family’s concerns, a meeting is planned with Lucy, her son Raymond and frailty medics, to ‘discuss her care’.

As for Lucy, she gesticulated as she explained: ‘I opened the door that day because I was expecting the chiropodist to arrive to do my feet. What a mistake I made!’

For now, the order not to resuscitate remains on her NHS records. And that makes this lucid old lady lose sleep at night.