Why I’m taking Matt Hancock to court over ‘do not resuscitate’ orders

Nine years ago, I’d never heard of DNACPR. It has turned out to be a life-changing issue for me and my family, and in the age of coronavirus it’s something that affects us all

As I write this, there is yet another story in the news of a care home that received a letter from a GP surgery saying a note would be put in the residents’ medical notes stating that, should they have a cardiac arrest, no ambulance would come to help. They would not be resuscitated, and they would not be taken to hospital.

An apparent blanket “do not attempt CPR” (DNACPR) decision, with no discussion or individual assessment of people’s clinical circumstances.

There have been many similar stories reported since the start of the coronavirus pandemic. Every one of them makes my heart heavy, because this is a situation my family has tried very hard to ensure does not happen.

Nine years ago I’d never heard of DNACPR. They do say that what’s meant to touch you doesn’t pass you by, and this was to become an issue that would be life-changing for me and my family.

In February 2011, two weeks after being diagnosed with terminal cancer, my mum broke a bone in her neck in a car accident. It was during mum’s time in hospital for treatment of the injuries sustained in the crash that the subject of DNACPR was first raised. To us, it was just a form that mum did not want, placed in her notes by a doctor but then removed at our request. Mum had made her decision and that, we thought, was that.

But the doctors kept raising the subject with mum, to the point that she felt badgered and asked them not to speak to her about it anymore unless another member of the family was present. The doctors didn’t talk to mum about it again, but did talk to the rest of us. All we could say that was mum had not made that request. She did not want that order in her medical notes.

After mum died, we asked for a copy of her medical records. At the top of the pile was a DNACPR form, written two days before mum’s death and stating that we had all agreed to it, but our family felt this was not true.

We had many questions about mum’s treatment, but the main one was exactly why was this form so important to the medics? When we looked into it further, we discovered that, when mum said she did not want the form, it was not actually her decision to make. Patient consent is only needed for treatments that are to be provided, not withheld. DNACPR is a decision not to offer CPR. The fact that consent is not needed remains one of the most misunderstood issues relating to end of life care. We also discovered that DNACPR is often the very first medical decision that is made when doctors think you are dying.

So we began to find out more about how these orders work. We discovered that when a DNACPR decision is made it should only relate to not offering CPR. We found that sometimes DNACPR decisions are incorrectly made based only on age or disability. Most frighteningly, we discovered that – although it was best practice to do so – there was no legal requirement for the decision to be discussed with the patient.

We discovered that what happened to mum had happened repeatedly over the years. We spoke with people who had also discovered undiscussed DNACPR forms in medical notes of a loved one who had died, or had been slipped into the side of bags when they were sent home from hospital. These people were often furious, left feeling they or their loved ones had been written off, even murdered. An undiscussed DNACPR can irreparably harm the vital trust relationship between doctors and patients.

We discovered that DNACPR is so much more than just a form.

My mum ran a care home for older people and dedicated her life to her residents. Driven by the knowledge that she would not have wanted what happened to her to happen to the people she cared for, my dad decided to take legal action to secure the right for people to be involved in DNACPR decisions. On 17 June 2014, he won his legal case.

I have been privileged to be invited to work with doctors in educational programmes since June 2014. Doctors have told me of barriers to having these important discussions. One consistent issue is the lack of time or privacy. This has come into sharp focus with the pandemic increasing demands on clinicians’ time, and making face-to-face contact difficult.

In my experience it is not a lack of care for patients at the heart of the terrible stories that have been in the news, but that there appears to have been a national directive for doctors to put emergency plans in place for people at risk of becoming very unwell if they catch Covid-19, even without them being able to engage in the process.

Just a few simple pieces of information would help patients and medics. These include the facts about DNACPR, including that they can be made without your involvement if you don’t want to discuss the matter, and that full information must be provided as to why this decision has been made on your behalf.

Matt Hancock, the health secretary, has refused my request to provide this information on the NHS website, so that people facing these discussions can access it, leaving doctors free to concentrate on explaining the clinical reason and helping people make plans for future treatments.

Instead, he has said the information currently available is sufficient – despite it being heavily focused on those wanting to make their own advance decisions, which is a very different issue to doctors deciding that their patient should be DNACPR without their input or the opportunity of seeking a second opinion.

In fact, the information one can access online about advance decisions is confusing about DNACPR and gives a misleading impression. It says “you can change your mind and your DNACPR status at any time”. This is just not right. Except in the special circumstances where a patient makes an advance decision to refuse treatment, DNACPR status is not something a patient always chooses, but is often a decision made by the treating team after consultation with the patient and, where appropriate, relevant family members.

The legal requirement to consult gives the patient or family the opportunity to seek a second opinion if they are concerned about the decision or think it is premature or inappropriate.

Until clear information is readily available about how these decisions are supposed to be made and what the patient’s and family’s role is in such decisions, we will continue to hear stories of frightened and angry people turning to lawyers, journalists, and social media for information.

In my eyes, it is a small ask that could have such a big impact, and I am prepared to go as far as I need to ensure people are given access to this information about their rights. That’s why I’m now planning to take Hancock to court over the matter.

I am raising funds to pursue the case using crowdfunding, and encourage you to add your support.