‘Don’t judge the book by its cover’- Clinicians and charities speak out about the positive role DNACPR conversations can play in providing good care

Authors:

Dr Linda Dykes, Consultant in Emergency and Interface Frailty Medicine

Professor Mark Taubert, Palliative Medicine Consultant 

Usha Grieve, Director of Partnerships and Services, Compassion in Dying, United Kingdom

This article and its accompanying joint statement links to a news report in the Independent 

The Covid-19 pandemic has brought Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions into the public consciousness like never before. Pressures on the healthcare system and individual clinicians have exposed long-standing problems with the way these decisions are communicated and made.

Reports of blanket decision-making, where decisions about CPR are made on the basis of characteristics such as age or whether a person has a learning disability, are completely unacceptable (and unlawful). The impact that this and poor communication has on patients and family members is huge. It causes significant distress and, importantly, risks eroding trust between people and their doctors.

However, DNACPR decisions – when done well, and communicated in a timely and sensitive way – can play an essential part in making a person’s end-of-life experience a good one. It is vital that everyone working in health and care collaborates to learn from the lessons of the pandemic. Just as importantly, we must work to build public trust and understanding of the role DNACPR decisions play in providing high-quality, personalised care.

This week, 38 healthcare professionals, campaigners and charities, including Marie Curie, Sue Ryder, Resuscitation Council UK and Hospice UK, have come together to assert the importance of good communication and DNACPR decision-making and commit to learning from the experiences of the people impacted by poor practice. Published by Shaun Lintern in the Independent, the joint statement and signatories can be read in full below. The statement comes ahead of a review into DNACPR practice during the pandemic, which is due to be published later this month,

All of us will die one day, and CPR was designed to treat otherwise healthy people whose hearts have suddenly stopped: CPR is not, and never will be, a treatment for “ordinary dying”.

The reality is that CPR usually fails, and is often a brutal and invasive procedure that can leave survivors with side effects such as broken ribs or brain damage. CPR rarely returns people to the quality of life they had before their heart or breathing stopped, and the chance of success is particularly low in people with serious pre-existing health problems, or those who have reached a great age.

Having clear instructions and DNACPR decisions in place can protect people from an intervention which could be harmful and/or unwanted. DNACPR decisions are about valuing people’s lives, and their wishes: whilst in the UK, nobody can demand CPR against medical advice, many people appreciate the chance to firmly refuse CPR – including some whose medical status would suggest a CPR attempt would possibly succeed. They can help to ensure people’s dignity and choices are respected right to the end.

Importantly, the existence of DNACPR decisions means that families are not left worrying about having difficult conversations in stressful circumstances about their loved one’s treatment. Exposure to Hollywood movies and social media discussions has been known to cause confusion for British families who often do not realise that, in this country, decisions about DNACPR are not their “burden to bear” – they are medical decisions, but must be discussed with patients (or their family if they cannot have a conversation themselves).  What’s more, we know that many people want the protection and reassurance of a DNACPR decision.

“I am fully aware of the negative effects of over-treatment at the end of life, however well-intentioned. I requested the DNACPR form because I have ovarian cancer and it would be utterly pointless (not to mention unnecessarily traumatic) to be put through a futile attempt at CPR.” (Caller to Compassion in Dying’s Information Line)

As we move through and beyond the pandemic, it is crucial that clinicians feel confident and supported to have conversations with their patients and reach a shared understanding about CPR decisions and what matters to that individual. If we don’t talk about it, we risk denying people of their wishes.

Joint Statement in full:

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions and decisions are a valuable and essential part of end-of-life care.

They enable people to refuse cardiopulmonary resuscitation (CPR) in the event their heart stops, and they enable clinicians to make timely and informed decisions about when the highly invasive and often futile procedure of CPR would do more harm than good. Not everyone wants CPR to be attempted, so for many people, DNACPR decisions offer reassurance that they will not be given a treatment that may be unwanted or unsuccessful.

For many, the pandemic has for the first time revealed the nature of caring for dying people and the realities of clinical decision-making. It is hoped that increasing people’s readiness to discuss death and dying will be one positive legacy of this pandemic, amid the devastation it has caused.

It also provides an important opportunity for learning and improvement. There have been examples of poor practice in relation to DNACPR decision-making during the pandemic, and the distressing impact this has had on patients and families cannot be underestimated. It is essential to thoroughly understand and learn from these cases to ensure that they do not happen again. To this end, we welcome the Care Quality Commission’s review into DNACPR decisions, due to be published in the coming weeks.

We are aware that the benefits of DNACPR decisions can be easily undone if they are not accompanied by honest, open and sensitive communication with a person’s healthcare team. To ensure that everybody who encounters a DNACPR discussion has a positive experience, we need to do more to listen to individuals and their families; their wishes must be sought and documented, their questions answered and their feelings acknowledged. A DNACPR decision must always involve the person, or those close to them, and should be part of a wider conversation about what matters to that individual.

A society that values its citizens is one that seeks to avoid inflicting unnecessary harm on them. Good decision-making and proactive conversations involving people and their families help to achieve this. DNACPR decisions are, for some, a vital part of this process. We encourage clinicians, charities, professional bodies, the media and Government to ensure that this message is heard loud and clear.

 

Contributors:

Professor Emeritus Sam Ahmedzai, Retired Palliative Medicine Specialist

Dr Anushka Aubeelack, Intensive Care Anaesthetist

Dr Arun Bhaskar, President, British Pain Society 

Compassion in Dying

Dr Joe Cosgrove, Chair of End of Life Working Group (2017-19), Faculty of Intensive Care Medicine

Dr Chris Danbury, Consultant Intensive Care Physician

Dr Linda Dykes, Consultant in Emergency and Interface Frailty Medicine

Professor Aneez Esmail, GP and Professor of General Practice

Lorraine Foley, CEO, Professional Record Standards Body

Dr Rohin Francis, Cardiologist

Clare Fuller, Registered Nurse and Director of Speak for Me LPA

Dr Dawn Harper, GP and Broadcaster

Moira Hill, End of Life Coach and Registered Nurse (1989 – 2016) 

Hospice UK

Dr Sarah Jarvis, GP and Broadcaster

Professor Celia Kitzinger, Coma and Disorders of Consciousness Research Centre

Professor Jenny Kitzinger,  Coma and Disorders of Consciousness Research Centre

Dr Diane Laverty, Macmillan Nurse Consultant in Palliative Care

Professor Alison Leary, Registered Nurse and Chair of Healthcare & Workforce Modelling, London Southbank University

Dr Rosemary Leonard, GP and Broadcaster

Dr Kathryn Mannix, Retired Palliative Medicine Consultant and Author

Marie Curie

Kate Masters, Campaigner and Family Member with Lived Experience of End-of-Life Decision-Making

Dame Barbara Monroe, Former Hospice CEO

Dr Matt Morgan, Intensive Care Consultant

Professor Adrian Newland, Past President, Royal College of Pathologists

Dr David Nicholl, Consultant Neurologist

Dr Zoe Norris, GP

Dr Liz O’Riordan, Retired Breast Surgeon, Author and Broadcaster

Resuscitation Council UK

Professor Julia Riley, Palliative Care Consultant

Ken Spearpoint, Principal Lecturer in Medical Education & Former Consultant Nurse in Resuscitation

Sue Ryder

Professor Raymond Tallis, Retired Geriatrician, Neuroscientist and Philosopher

Professor Mark Taubert, Palliative Medicine Consultant 

Dr Paul Teed, Emergency Medicine Physician

Dr Dan Thomas, Consultant Geriatrician

Professor Sue Wilkinson, Chair, Advance Decisions Assistance

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