Family members who have witnessed or taken part in unsuccessful CPR when their relatives are at the end of life are almost never heard from. But I think we all can learn from Debbie, a first aider whose frail mother collapsed at home, who tried asking not to have CPR.
Debbie’s story: I’m a trained first aider. My Mum had four chest infections in a row last winter so I was staying with her. She had lived alone since Dad died, and had always been independent. But the problems with her chest were getting her down. When she told me she was fed up with life, I was going to ask for a nurse to come round to assess her. Anyway, she went to the toilet, and I felt she was gone too long. When I went to check, I found her collapsed.
Faced with that situation, instinct and training kicked in. I got her onto the floor, rang for an ambulance and started CPR.
I know I broke her ribs — I felt a horrible, sickening crunching as they snapped under my hands. It was nothing like the dummy we’d practised on.
The doctors in A&E told me it was common in elderly people, but they never teach you that on first aid courses. And it was all so undignified, squashed in her hallway, and me knowing all the time that if I revived her she would probably never forgive me.
I don’t know how long the ambulance took to arrive, but it felt like forever. I was glad to hand Mum over to the professionals and did my best to pull her pants back up and try to restore at least a little dignity to her. They applied the paddles, and got her heart beating. But I couldn’t tell the ambulance service that I wanted to let her go. That I knew my Mum. That I knew there was no way she would want to live the remainder of her life no longer capable of being independent.
She was unconscious but they got her stable enough to transport her to hospital. I left in my car at the same time but arrived at the hospital before them. When they rushed her into A&E, the ambulance-men told me that I’d given her the best possible chance of survival, but her heart had stopped again on the journey and they’d had to resuscitate her again.
The A&E staff were brilliant. But on the way there I’d had time to think. Mum had managed to plan her funeral — she’d even written down what she wanted to wear, what to place in her coffin and the exact service she wanted because she’d been so impressed with Dad’s funeral.
But we hadn’t thought about the actual dying. And nobody teaches you the words to say when you want the doctors to let somebody go. Not to resuscitate them if their heart stops again.
It was not an easy decision but I knew it was right. Your head is saying “let her go” but your gut is churning and you desperately don’t want her to die. You also do worry about what the doctors will think of you — will they think you don’t care? Will they try to persuade you to change your mind when it’s already the most difficult decision you’ve ever had to make?
I could bear that the professionals might think badly of me. But I couldn’t bear that my Mum would hate me for keeping her alive without being fully restored to health and fitness and I just knew no doctor could do that. They agreed to make her comfortable, not to try resuscitating her again, and see how she fared through the night.
I was called back to the hospital at 4.30 the next morning as they thought the end was near. The doctors told me her body was shutting down. The decision to turn off the life support machines was easy, as was the decision to donate her corneas. If something good was going to come out of tragedy, that was a comfort. I held her hand as she passed away. But by the time I said the words I’d always wanted to say, my Mum was unconscious. I’ve been told that hearing is the last sense to go so I like to think she did hear.
No one wants their Mum to die. But who wants their Mum to suffer? I loved my Mum enough to try to save her. But I also loved her enough to let her go.
‘Debbie’ is not this person’s real name. But this is a real story, and these are ‘Debbie’s’ real words.
I admire Debbie’s bravery both in trying to save her mum and — even more difficult — in letting her mum go. There’s much talk about being ‘patient-centred’. But Debbie truly did put her Mum front and centre — despite her worry that the doctors might think she didn’t care.
I wrote back to Debbie about how sorry I was, not only about what happened to her Mum, but also that she had to do all this by herself. Writing to me was the first time Debbie had shared her story and, although I reassured her, she was still — 2 years later — worrying that the ribs she had broken had contributed to her Mum’s death.
I think there are lessons here for medical staff, as well as all the mothers and daughters — and fathers and sons — out there.
For medical staff, the stereotype is that relatives will all be upset by DNACPR discussions, and that they will be difficult for the doctors. This can undoubtedly be true some of the time. But we should not assume that is always the case, especially when DNACPR is set in the context of overall goals of care.
I’ve already shared two examples of patients and relatives feeling reassured and cared for when medical staff ask about DNACPR.
And I think everyone would agree that Debbie was definitely having much more upset and difficulty than any of the medical staff she encountered!
Her worry that the staff would “think badly” of her just added to this. This was not something that I had myself previously ever worried about. I have already written about how happy I was that no-one attempted to resuscitate my own father when he died of metastatic cancer.(1) Although I know there are some bad people out there (2), then when I worked as a doctor, I was usually humbled by the love I saw in families.
Maybe the biggest lesson, though, is that talking about all of this earlier could have helped. It may not have prevented the collapse, but it could have prevented the CPR, and all the medical interventions that happened.
Even more importantly, it might have given Debbie time to say “the words I’d always wanted to say”.
1. Mawer, C. Cardiopulmonary resuscitation can be futile and sometimes worse in dying patients BMJ 2014; 349
2. A Prevalence Study carried out in 2007 suggested that 8.6% of older people experienced abuse in their own homes, from people they knew. Action on Elder Abuse. What is elder abuse? http://elderabuse.org.uk/what-is-elder-abuse/ Date accessed: 25 September 2016
This post remembers Debbie’s Mum. And it’s in honour of Debbie, who has told me: “If anyone else can benefit or learn from my story, at least something positive will come out of it”.