DNACPR: same old problems – how do we get better?
Our recent report highlighted some big problems with the way Do Not Attempt Cardio Pulmonary Resuscitation (DNACPR) decisions are being made and communicated. The findings may seem familiar, and that’s because we’ve been here before. A Care Quality Commission report from 2021 found many of the same issues.
Communication is everything
One of the root causes of the poor experiences people have comes down to the quality of the conversation. Bear in mind it’s ten years on from a key legal judgment in 2014 which placed a legal requirement on doctors to ‘consult’ with patients (except in very limited circumstances) when a DNACPR decision is made.
Our research looked at good and bad experiences, and it showed decisions not to attempt CPR were sometimes not being communicated at all or were done in ways that were uncaring. Other times family members felt that they were being asked to make or communicate the decision, which resulted in guilt and loneliness.
It’s really important to say though that it was rarely the decision itself but rather its poor communication that caused distress.
Conversation ≠ Understanding
Even when doctors do ‘consult’ patients and/or families about a DNACPR decision, sometimes the discussion is so cursory as to not be fully understood. People often did not know why a DNACPR decision was needed or what triggered a DNACPR discussion. It causes confusion, frustration and raises fears of ageism.
There is often a disconnect between patients and families. Frequently we speak to people who have had a DNACPR conversation with a doctor, but they come away from that conversation not understanding why the decision has been made, the realities of CPR, how a DNACPR decision can help or what treatment will be given.
The people who took part in our research showed clearly that knowing this is key to them feeling cared for when a DNACPR decision is made. There is definitely something in the need for better public awareness of CPR and DNACPR.
CPR has become synonymous with a form of medical heroism, not helped by depictions of life-saving CPR on TV and film.
And in addition to a more informed public, there is a responsibility on the part of clinicians to make sure patients and their relatives really understand the decision being made and why and for this conversation to happen with compassion.
As Dr Zoë Fritz said in her blog post “to discuss CPR you need to have a good conversation, and that conversation needs to achieve shared understanding”.
She says it’s important to get a shared understanding of:
- The patient’s condition
- What outcomes the patient values and what outcomes they fear
- What treatments might actually help that patient get to the shared outcomes.
And as a tiny corner of that, you should discuss CPR.
DNACPR decisions are needed
It’s easy to get disillusioned but we shouldn’t lose sight of the fact that DNACPR decisions when done well are a core part of good end of life care.
In fact we heard a clear message in the report from people who proactively wanted a DNACPR form. They had understood and accepted the need for the decision and some even proactively asked for this – either through a formal DNACPR form or by including it in an Advance Decision to Refuse Treatment.
Many people found comfort from having a DNACPR in place so that they were protected from inappropriate CPR.
How do we get there?
We seem to know what’s going wrong. In fact we’ve known for some time. Our report even shows what a good DNACPR experience looks like.
Improving DNACPR decision-making and communication needs commitment and cross-collaboration from everyone involved in health and care, from government and system leaders to the individual doctors and nurses who work so hard to care for people at the end of their lives.
It also needs a public health approach and for end of life conversations to happen earlier in a more routine way. Many of the people we spoke to with a bad experience said they’d wish they’d had an opportunity to understand CPR earlier in life, before a crisis.
The recommendations in our report come directly from people with experience of the issues. We hope their voices are heard.