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.
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.
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