It is reported in the BBC news yesterday (18th March 2021) that over the past year the CQC has identified 508 “Do not attempt resuscitation” (DNAR) orders which were inappropriately put in place without discussion with the person or family involved. There is evidence to suggest this is happening more frequently for people who have learning difficulties. This care is outside guidance and poor practice as such critical decisions must be made with people rather than to them.

There is some confusion though about DNAR orders which I recently tried to clear up in a Facebook post about why my son has a DNAR and it isn’t because he has a learning disability. The reality is much more complex and simple than that.

Why my 15-year-old son has a DNAR and has done for most of his life

1) It is NOT because I love him less than his brothers. It isn’t simply because he has a profound and multiple learning disability and therefore a poor quality of life. Nor is his life worth less than others. It is because I believe that if his heart stopped, if he died, resuscitation would not be the best option.

2) Resuscitation is unlikely to work. There is a misconception about DNAR’s. A testament to Pam’s successes on the beach, bouncing up and down on people’s chests and Charlie Fairchild’s medical brilliance in Casualty, we have a general belief that CPR is often successful. The truth is resuscitation is unlikely to work. There is a reported 2-10% chance of success. If someone has complex health needs or underlying conditions, that percentage reduces.

DNAR’s are not about giving up on him

3) DNAR’s are not about giving up on him. They are not about withdrawing treatment or care but rather not trying to restart a heart that has stopped. We will do all we can to keep our family intact. If our son has a respiratory arrest (which has happened several times before) this is likely to be because of a seizure and he is for full and active treatment.

4) DNAR’s are rarely used. Most deaths are prolonged and predictable. For those who have shorter traumatic deaths, DNAR’s are not relevant. The important, life-changing decisions when caring for people, especially those with complex needs or learning disabilities, happen long before their heart stops. As parents, we have had vital end-of-life and complex care discussions before they are needed. ReSPECT documents express personalised recommendations about care and treatment in a future emergency where a person is unable to make or express choices. These are so much more important than DNAR’s.

I believe my son deserves as good a death as he has life

5) My son deserves as good a death as he has life. I am devoted to making his life full of joy, fun, varied and packed with opportunities. Death isn’t a matter of ‘if’ but rather ‘when’ and ‘how’. When my son takes his last breath (which it is expected to happen before I take mine) I want to be holding him, telling him how much he is loved, treasured and valued. I don’t want a team of medics swooping in, pushing me out of the way to try and unsuccessfully attempt to make his heart start after he has died. He has been brave and strong his whole life. He deserves the same courage and strength from me – even when the outcome will split my life in two.

I have set up a business (Born at the Right Time) founded on the need for effective communication and working with families. I’m convinced DNAR’s shouldn’t be the debate as much as our scrutiny of how we value and support people, especially those with complex needs and learning disabilities. The way we fund health and social care and include families and individuals in the care and support they are given. The headline isn’t as scary or sexy – but the real issues rarely are.

The hardest conversations tend to be the most important ones.

What is your experience of DNAR’s? Please comment below.

Rachel is a nurse, writer, speaker and trainer living in Essex with her husband and three sons; one of whom has severe disabilities and life-limiting epilepsy.

As well as doing laundry and endlessly trying to tidy away toys, she won the 2018 BAPs award for ‘Blogger ‘Making a Difference’  and a 2020 finalist in the RCN Nursing Awards for ‘Commitment to Carers.’ In 2015, she published her memoir ‘The Skies I’m Under’ and founded Born at the Right Time, an organisation dedicated to Bridging the Gap between families of children with complex needs and the practitioners who support them. She loves speaking at conferences, providing CPD accredited training and parent workshops

She is deeply passionate about salt ‘n vinegar chips with hummus and as a result, occasionally forces herself to go for a run in an attempt to counteract her dedication to everything carbohydrate.