Misuse of do-not-resuscitate orders risks undermining care, warn leading clinicians and charities

The unlawful or inappropriate use of “do not attempt cardiopulmonary resuscitation” (DNACPR) orders by some clinicians risks undermining the care of terminally ill patients, almost 40 leading doctors, nurses and charities have warned.

During the coronavirus pandemic repeated examples of unlawful decisions have emerged including widespread blanket orders on care home residents and patients with learning disabilities.

Now the charity Compassion in Dying along with Marie Curie, Hospice UK and Sue Ryder, as well as more than 30 GPs, nurses and doctors, are warning more must be done to listen to patients and their families.

In a joint statement, signed by more than 30 clinicians, they warn: “There have been examples of poor practice in relation to DNACPR decision-making during the pandemic, and the distressing impact this has had on patients and families cannot be underestimated. It is essential to thoroughly understand and learn from these cases to ensure that they do not happen again.

“We are aware that the benefits of DNACPR decisions can be easily undone if they are not accompanied by honest, open and sensitive communication with a person’s healthcare team. To ensure that everybody who encounters a DNACPR discussion has a positive experience, we need to do more to listen to individuals and their families; their wishes must be sought and documented, their questions answered and their feelings acknowledged.

“A DNACPR decision must always involve the person, or those close to them, and should be part of a wider conversation about what matters to that individual.”

At the start of the pandemic, in 2020 NHS England and the Care Quality Commission issued warnings to doctors over the use of blanket DNACPR orders as concern mounted over high numbers of deaths. Since then more examples have come to light including the continued use of orders in people with learning disabilities.

Under UK law, a do-not-resuscitate decision is one made by clinicians and does not require consent but after a High Court case in 2014 clinicians are required to consult the patient or their families, except in limited circumstances. A decision not to resuscitate a patient must be an individual one and not a blanket approach.

The NHS has repeatedly said a learning disability on its own does not justify use of a DNACPR order and that treating one as such could be a breach of human rights.

Health secretary Matt Hancock bowed to pressure under threat of a judicial review promising to set out detailed advice and guidance but so far this has not been done.

In March 2020 Sonya Brown discovered a DNACPR order in the nursing notes for her husband Alan, who had been diagnosed with lung cancer in October 2019. The notice was dated the day he was admitted to hospital in March 2020.

Alan had been discharged home, but no one had mentioned the order to Sonya who described being overwhelmed by the situation and guilty when her husband died eight days later.

The hospital claims her husband signed the DNACPR form but she doubts he would have understood what was happening.

She said: “What I don’t understand is why no one thought to phone me and talk to me about it.”

She said no one explained how seriously ill her husband was from the moment he was diagnosed, adding: “If we’d known how serious it was Alan probably wouldn’t have had his chemo, he would have prioritised quality over quantity of life. But instead he was denied the chance to make a plan and have a good death, and I was completely unprepared. I had no idea how to care for a dying man at home. It was horrific and I have had sleepless nights and nightmares ever since. It will be with me forever.

“It felt like a decision was taken away from him; that a bit of his liberty was taken away. I don’t think he had capacity to make the decision anyway, but it should have at least involved me, his family.”

In contrast Peter Hallgarten, aged 89, from Camden in London has had a DNACPR in place for the past 10 years and told The Independent knowing this gave him and his family “peace” when he was admitted to the Royal Free Hospital, at the height of the first wave of the pandemic.

He said: “It is a question of quality of life. You can be at peace and in control yourself.”

Mr Hallgarten praised the care he received and said he was very lucky to have survived the virus.

Concerns over the misuse of do not resuscitate orders has prompted a review by the Care Quality Commission which is expected to report its findings within weeks. In an interim report in December, it warned thousands of inappropriate orders may still be in force.

Usha Grieve, director of partnerships and services at the Compassion in Dying charity, told The Independent: “The people we support tell us that for them, when done well, timely conversations can make the difference between a good and bad experience at the end of life. DNR decisions also enable clinicians to provide lawful, compassionate and person-centred care for their patients, and enable them to respect the wishes of the many people who wish to refuse CPR - an often futile intervention that rarely returns people to their previous quality of life and, in some cases, results in broken bones, burns and considerable distress.

“But when decisions not to attempt CPR are made without explanation or in a blanket way, such as on the basis of age, living with a learning disability or being a care home resident alone, this causes serious and lasting distress to people and families – as Sonya has experienced first-hand. This is completely unacceptable and the very antithesis of person-centred care at the end of life.”