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My mum’s care means that decisions not to resuscitate must now be discussed with patients

BMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j1084 (Published 02 March 2017) Cite this as: BMJ 2017;356:j1084
  1. Kate Masters, relative of patient
  1. Cambridgeshire, UK
  1. katemasters67{at}sky.com

Doctors as well as patients should talk more openly about dying, death, and care at the end of life, says one of Janet Tracey’s daughters, Kate Masters

In March 2011 my mum, Janet Tracey, died in hospital. She’d broken her neck in a car accident; she also had terminal cancer. Care in her final days seemed dictated by a form with a funny acronym: DNACPR, which I now know means “Do not attempt cardiopulmonary resuscitation.”

Mum was often intubated and communicated with pen and paper. “Please do not exclude me,” she wrote. Her medical notes recorded that she wanted to be involved in discussions about her care. But, when doctors decided that she would not survive resuscitation, they didn’t discuss it with her. This medical decision was in my mum’s best interests, they told the family. They didn’t mention DNR, DNAR, DNACPR, or the red edged form documenting the decision and conversation.

Mum had already had two failed extubations, and we were told that she might die when they tried again. But she didn’t. She spent that afternoon chatting with us and asked for a Burger King.

DNACPR form

We were elated that she was feeling better. Staff said not to worry about the “DNACPR form” on my mum’s file, but a few days later my sister looked it up online and asked the hospital to remove it. Mum didn’t want that form, and now conversations with staff about it were frightening her. On one day her notes made more mention of the form than anything else.

The family were also badgered about the form. The doctors told us that chest compressions would break my mum’s ribs. Electrodes would burn her skin. She would be awake throughout. She probably wouldn’t survive, and, if she did, she may be in a vegetative state, go to intensive care, and die soon anyway—and did I want to put her through that? Of course not. But my mum had made her decision: she didn’t want the form.

It’s really hard for patients to understand that CPR is brutal and often unsuccessful, especially when there’s a big push to train the public, even schoolchildren, to provide it.

Mum was due to go to a hospice on a Monday. On Saturday another DNACPR form was placed on her file (the court found that this had been done with the agreement of the family). Mum died on the Monday morning.

Because we didn’t know how ill my mum was, we missed out on time with her, and we weren’t all there when she died. None of the family had the chance to say goodbye properly. I now know that clinicians use language such as “pain box” and “comfort” to indicate the end of life. “Poorly” meant dying.

Dad took the hospital to court, not because of the clinical decision not to attempt CPR but because of the communication. The judge ruled that DNACPR orders should be discussed with patients unless this would cause them harm.

DNACPR is a big, scary acronym that can strike fear into patients and clinicians alike. Doctors should reassure patients that it does not mean “do not treat”

Problems for doctors

Since the end of the case in June 2014 I’ve spoken to many doctors who say that this legal duty causes them problems. For example: “Why should we discuss something that won’t work?” “We don’t have time.” “There’s no privacy.” “We can’t get hold of the relatives.” “It always happens in the middle of the night.” “Patients get upset when you talk about death.” “It’s hard to talk about death when we’re trained to save lives.” “CPR isn’t like it is on Holby City.”

DNACPR is a big, scary acronym that can strike fear into patients and clinicians alike. Doctors should reassure patients that it does not mean “do not treat” and be more open about what treatments will or won’t work. An avoided or poor conversation can lead to mistrust that is hard to repair.

Online there are many more stories about DNACPR now than in 2011, and none that I’ve seen recounts great experiences. I’d love to see some good experiences in the media.

We urgently need a national conversation about death and dying to dispel myths and to inform the public about the reality of CPR and how it affects end of life care.

Information for patients about DNACPR is still lacking. With nationally available and consistent information, patients could engage properly with doctors about their end of life wishes. They could start the conversation.

Footnotes

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