Listen to the diverse views of patients and families.
ReSPECT is, as its name suggests, about emergencies(1). Maybe this is why primary care is mentioned so rarely(2) in this week’s valuable set of BMJ articles about resuscitation. With the strong push for home deaths(3), this feels like a significant gap.
One way forward, if we’re serious about discussion, is to foster listening to, as well as talking at patients and families. Many clinicians are already doing this(4), but those clinicians who feel “hesitant” to raise the subject of resuscitation(5), could usefully hear the quiet voices of patients and families who appreciate it when they do.
John’s wife, for example, had pancreatic cancer. He wrote to me(6) that their GP made it clear that she had the option of a DNACPR order: “We were impressed and readily complied”. And Sue felt reassured when she was asked about resuscitation on emergency admission.(7)
It’s not only John and Sue. The Compassion in Dying Information Line receives many calls from people worried about being resuscitated against their wishes. Significant numbers of callers ask directly how to avoid attempted resuscitation, with others worried that their wishes won’t be known or respected.(8)
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, whose frail mother collapsed at home.(9) As a first aider, Debbie automatically attempted resuscitation, even though she knew her Mum would “hate me for keeping her alive without being fully restored to health and fitness”. While an ambulance took her Mum into hospital, Debbie had “time to think”. She asked the A&E doctor not to attempt resuscitation if her mother’s heart stopped again. This 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.”
Debbie eloquently described her 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?”
As she said, “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.”
Coping with a situation like that puts doctors “difficulties” initiating conversations about DNACPR into perspective. But if you’re a clinician and don’t say anything, all those other daughters and sons out there will either have to do your job for you, or watch while doctors keep on trying to “fix [patients] until the very end”(10).
Debbie’s biggest regret is that “by the time I said the words I’d always wanted to say, my Mum was unconscious.”
More outpatient specialists could help avoid this sort of thing — honestly managing expectations rather than focusing on ‘cures’ whenever they make diagnoses and deal with exacerbations of chronic diseases.
Another positive and more community-based approach to Advance Care Planning is included in the recent Compassion in Dying initiative to ‘Make it your decision’ (11)
Full paramedic resuscitations of people at the end of life, and the poor care associated with stand-alone DNACPR orders (12), must end. But if this is going to happen, then surely we need to start measuring different outcomes. Why is it that ‘success’ is primarily thought of in terms of Return of Spontaneous Circulation (ROSC) and survival?(13).
After all, if we don’t count good natural deaths, it’s almost as though we think they don’t count.
1. ReSPECT: Recommended Summary Plan for Emergency Care and Treatment.
2. I can only find Primary care mentioned in Box 2. Pitcher et al. Emergency care and resuscitation plans. BMJ 2017;356:j876
3. NHS England. Actions for End of Life Care: 2014-16.
4. For example, the Welsh ‘Talk CPR - Discuss DNACPR’ campaign http://talkcpr.wales
5. Editors Choice. We need to talk about resuscitation. BMJ 2017;356:j1216
6. Mawer, C. What do people really think about CPR?
7. Mawer, C. Some patients and families appreciate talking about resuscitation. http://drcaromawer.com/patients-families-talking-resuscitation/
8. Table 8 page 35 Perkins GD, Griffiths F, Slowther A-M, George R, Fritz Z, Satherley P, et al. Do-not-attempt- cardiopulmonary-resuscitation decisions: an evidence synthesis. Health Serv Deliv Res 2016;4(11)
9. Mawer, C. It’s difficult asking not to have CPR. http://drcaromawer.com/difficult-asking-not-to-have-cpr/
10. Manek, N. One dying patient taught me that doing nothing can be brave. 22 Sept 2016 https://www.theguardian.com/healthcare-network/2016/sep/22/dying-patient... Date accessed: 25 September 2016.
11. Make it your decision: https://www.makeityourdecision.org.uk
12. Relevant papers include: Fritz Z. Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders: Current practice and problems – and a possible solution’. SRCC seminar. June 2014 / de Decker L, Annweiler C, Launay C, et al. Do not resuscitate orders and aging: impact of multimorbidity on the decision-making process. J Nutr Health Aging 2014;18(3):330-5 / Richardson DK, Zive D, Daya M, et al. The impact of early do not resuscitate (DNR) orders on patient care and outcomes following resuscitation from out of hospital cardiac arrest. Resuscitation. 2013 Apr;84(4):483-7 / Fritz Z, Fuld J, Haydock S, et al. Interpretation and intent: a study of the (mis)understanding of DNAR orders in a teaching hospital. Resuscitation. 2010;81(9):1138-41 / Wenger NS, Pearson ML, Desmond KA, et al. Outcomes of patients with do-not-resuscitate orders. Toward an understanding of what do-not-resuscitate orders mean and how they affect patients. Arch Intern Med 1995;155(19):2063-8.
13. Perkins G et al. National initiatives to improve outcomes from out-of-hospital cardiac arrest in England. Emerg Med J. 2016 Jul;33(7):448-51
Competing interests: I don't personally want CPR or any other arduous 'fixes', when I reach the natural end of my life. I've got two chronic diseases so that may come sooner for me than for you!