Scandal of 500 care home patients given DNR orders without consent

Scandal of 500 care home patients given DNR orders without consent: Watchdogs’ report says ‘blanket use’ of end of life policy during the Covid pandemic may have broken the law

• Care watchdog says hundreds did not know they had a do not resuscitate order
• Care Quality Commission investigated ‘blanket use’ of notices in social care 
• Patients reported finding notices slipped into their bags after leaving hospital

Hundreds of care home residents had Do Not Resuscitate orders imposed on them without their consent during the pandemic, a damning report reveals today.

The care watchdog investigated the ‘blanket use’ of the notices in social care amid the crisis and highlighted 508 cases which may have breached human rights law.

The Care Quality Commission report said overall around 30 per cent of people with a DNR in place – and 28 per cent of relatives – were not aware it had been applied.

Nearly a third of care home residents with a do not resuscitate order were not aware that one was in place, according to a Care Quality Commission report

Some patients have reported finding notices slipped into their bags after leaving hospital. The notices – also known as DNARs and DNACPRs – stop doctors attempting cardiopulmonary resuscitation (CPR) to restart a patient’s heart.

Guidance states they should only be put in place on an individual case-by-case basis after discussion with a patient or their family about end-of-life plans.

But the CQC report said: ‘We heard concerns that decisions were being made without involving people or their families and were being applied to groups of people rather than taking into account each person’s individual circumstances.’ 

Some patients have reported finding notices slipped into their bags after leaving hospital

It said this potentially breached Article 2 of the European Convention on Human Rights, which protects the right to life.

The report said: ‘Applying “blanket” DNACPR decisions to groups of people in particular equality groups, such as people with a learning disability or older people, whether or not a DNACPR form has been completed, is potentially discriminatory and unlawful.’ 

The CQC surveyed 2,048 adult social care providers for the report. 

Sonya Brown only discovered that her husband had a Do Not Resuscitate order when she found documents left on her sofa by a healthcare worker.

Mrs Brown, 51, made the discovery ‘by chance’ and said the decision to put the order, called a Do Not Attempt CPR (DNACPR), had not been discussed with her or their family.

Her late husband Alan was diagnosed with lung cancer in October 2019 and was admitted to hospital in March last year suffering severe breathlessness.

He was sent home after a few days on the ward. She said nurses left the DNACPR on her sofa the next day.

‘I was just overwhelmed when I saw it,’ she said.

‘At no point did anyone explain that his disease was progressing and this was normal. We felt completely adrift.’ She said that Alan died around eight days after returning home.

‘I thought to myself, if I had tried to lift the DNR would he have lived?’ she said. ‘What I don’t understand is why no one thought to phone me and talk to me about it, particularly when I couldn’t be with him in hospital because of lockdown.

‘Normally I would have been a constant presence, only leaving for mealtimes — I would have been there to be able to ask. You’d think someone would have gone out of their way to tell me because I wasn’t there.’

Mrs Brown, an advice line worker with two adult sons from Lanarkshire in Scotland, added: ‘I also questioned the hospital after he’d died. They told me Alan signed the DNR and had capacity to. But from the texts he was sending me in hospital I doubt he would have understood what was going on. Even if this was the case, why did no one think to call and let me know?’

She said: ‘There is no excuse – if you are making this decision for a patient you must involve them and their family. It should not be a shock like it was for me.’

It found that five per cent of DNR notices – 508 in total – were put in place without agreeing it first with the individual or their family. 

Wrongful use of the orders could deny vulnerable people life-saving treatment and the CQC said it could have prevented some going to hospital. 

The report warned: ‘In the early days of the pandemic, we heard that ambulance staff had been reluctant, or had refused, to take people to hospital.’

It stressed: ‘These figures also raise serious concerns that individuals’ human rights were potentially being breached.’ 

It concluded: ‘Covid-19 has shone a light on end-of-life planning, treatment and care. Too many people have been left feeling ignored and unable to have their voice heard and their wishes respected.’

Charities said the ‘disturbing’ report showed that older people’s right to life was ‘ridden roughshod over during the pandemic’. 

Families previously warned of the misuse of DNRs on people with learning disabilities over the past year. 

The report said in future healthcare orders must not be used in a ‘discriminatory way’ for ‘people with a learning disability who are not near the end of their lives’. 

The Daily Mail has previously highlighted the plight of thousands of patients being handed DNR notices without their consent, with some finding them popped secretly in their bag by nurses before they are discharged from hospital.

Yesterday the charity Compassion in Dying said the pandemic had highlighted a lack of clarity and communication surrounding DNRs.

One man who found one in a bag after returning from hospital said: ‘This had not been discussed with me or my family at any time during my stay. 

My wife was so shocked that she vomited on the carpet and could not stop crying.’

Caroline Abrahams, of Age UK, said: ‘It’s extremely disturbing that this report effectively stands up the notion that some older people’s rights to choose were ridden roughshod over during the pandemic.’ 

Gavin Terry, of the Alzheimer’s Society, added: ‘This should never have happened as it effectively denied individuals their right to life without appropriate discussion.

Dan Scorer, of learning disability charity Mencap, said: ‘It is unacceptable that assumptions are made about people’s quality of life or their wishes in relation to treatment. They deserve and have a right to so much better.

‘Everyone should receive access to personalised and non-discriminatory support. We now need to see action from Government.’

Chilling note hidden in my darling’s records 

Commentary by Sue Reid 

The day my partner Nigel came home from hospital last May, the doctors promised he was going to live. Not years, perhaps, but enough precious time to enjoy our summer garden while getting to know his new granddaughter, Cosima.

Instead, politely and with grace, he died on our sofa 36 hours later.

He was desperately weak when he was discharged in a wheelchair from the hospital by two nurses.

When I tried to put a seatbelt round him in the back seat of the taxi, he said: ‘No, too much pain’.

The taxi had to take a route that involved no speed-bumps because every jolt was too much for Nigel.

When he arrived home, he abandoned his shoes at the bottom of the three steps to our house saying ‘they are too heavy’. Nigel, who was 6ft 4in tall, made his final entry into our home almost crawling. 

It was impossible for myself, my son Harry, and our friend Tony (the taxi driver) to haul him upstairs to what he called ‘our boudoir bed’. His words when we laid him down on the sofa were: ‘It’s so quiet here. I love you.’

How could this have happened? How could he have been discharged in this state? I began to ask questions.

Which is why, three weeks ago, a heavy box containing Nigel’s medical records arrived from the private London hospital group which had treated him since he was diagnosed with bile duct cancer in January last year.

Among the many hundreds of pages of notes, scans and reports, we found a two-page document, a Do Not Resuscitate form. It was created at 5pm on May 5, 2020 and bears a main signature of a ‘healthcare professional’ which is impossible to decipher.

It states that the ‘multi-disciplinary’ medical team ‘contributing to the decision’ were Nigel’s ‘ward team’. They are unnamed. But, most significantly, the form says the patient had the ‘capacity’ to discuss this decision, but was not asked about it.

It adds that neither I, nor any of his relatives or friends, were consulted. It states that the reason for this is that we were ‘not present’.

This was in the middle of the Covid-19 restrictions. I was not allowed to see Nigel in the hospital. But the doctors had my number and when I talked to Nigel in his room (sometimes 18 times a day) he would put me on to them if they were there. Why was Nigel – who had his wits about him still – not consulted? Why wasn’t I?

Of course Nigel was very ill and I understand why a DNR notice was considered. But whatever the good intentions of his consultants, to have applied it secretly and without our consent is deeply shocking and upsetting.

Six months after Nigel died and before we found his DNR notice, I discovered that many hundreds, if not thousands, of people had also been given diktats ruling they must not be revived from cardiac or respiratory failure. Again, without their consent or consultation, whether in the NHS or in private hospitals, or in the community.

I looked into this after a friend told me that his neighbour, Lucy Jeal, then 93, was visited last autumn by ‘a community frailty nurse’ from Guy’s Hospital, in central London. The nurse arrived unannounced at her south London council flat, and told Lucy – who is sprightly enough to walk a quarter of a mile to get her lunch every day from her favourite shop – that the notice would arrive by post the next day, signed by him, the local GP and a geriatric consultant at Guy’s.

It duly did. Lucy said afterwards that there had been no discussion and she was distraught: ‘I felt like throwing myself into the Thames. This man walked in. He wandered around my flat, even into my bedroom, then came back and told me that I was not worth saving.’

According to the Care Quality Commission (CQC) report today, Lucy is one of many who have been treated in this way. Even children, some of them disabled, may have received them, it says.

When, late last year, the Mail asked readers to tell us of their experiences of DNR notices, we received hundreds of letters. More are coming in daily. They have now, with the permission of our readers who sent them, been sent to the CQC.

Those who have found a surprise DNR notice on their medical file include a 48-year-old school assistant on kidney dialysis and an 80-year-old who sails his boat out of Weymouth every day. Incredibly, a Suffolk pensioner says a nurse had asked her if she had a DNR on her records when she went for a Covid-19 jab at her local hospital.

And then there is my Nigel. Six hours after his death at 6.30 in the morning, the consultants from his hospital rang me. They insisted he had been expected to live. They claimed Nigel had been sitting on his bed looking at his computer before he was discharged. They never mentioned the DNR signed off less than three weeks earlier.

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