• New Compassion in Dying research released as CQC publishes review into use of DNRs during pandemic
  • During pandemic, hundreds sought support from charity to refuse potentially harmful or futile CPR through DNR form if seriously ill with Covid-19 or other illness in future
  • However, pandemic also exacerbated existing issues with poor communication and exposed new problems with blanket decisions, causing severe distress to individuals and families
  • Compassion in Dying and CQC today highlight need for improved training, information and support for healthcare professionals; public health awareness campaign on DNR decisions; and consistent, national approach to DNR record-keeping and sharing

The proportion of queries about CPR (Cardiopulmonary Resuscitation) and Do Not Attempt CPR decisions (DNACPR, also known as DNAR or DNR) more than doubled in 2020 compared to 2019, Compassion in Dying reports today (Thursday 18 March 2021), with the majority of calls on the subject from people seeking protection from unwanted, potentially harmful or futile CPR.

However, analysis of enquiries to the charity’s free, nurse-led information line on the subject between 2017 and 2020 reveals that the pandemic has also exacerbated longstanding issues with how DNR decisions are made and communicated, causing significant distress to individuals and families.

Compassion in Dying’s new report, Better understanding, better outcomes: what we’ve learned about DNACPR decisions before and during the Coronavirus pandemic, comes as the Care Quality Commission publishes its review (available here Thursday 18 March 2021) into the use of DNR decisions over the past year, which the charity has also contributed to. Both organisations today highlight the need for improved training, information and support for health and care professionals; a public health awareness campaign on DNR decisions; and a consistent, national approach to DNR record-keeping and sharing.

During the pandemic, the charity experienced a significant increase in people seeking support to refuse CPR which may be unsuccessful or cause more harm than good, should they become seriously ill with Covid-19 or other illnesses in future.

CPR is an invasive procedure which, if successful, rarely returns people to their previous quality of life, often causing side effects such as broken ribs and brain damage. In hospital, after having CPR around 2 in 10 people survive and leave hospital, with survival rates usually lower in other settings.

Peter Hallgarten, 89, from North London, who featured in BBC Two’s ‘Hospital’ documentary last year after he was hospitalised with Covid-19, said:

“When DNR was discussed with me in intensive care, I felt calm and prepared as my GP had already put one in place for me years ago at my request. I also have a Living Will refusing other life-sustaining treatment, and before I caught the virus my wife and I discussed that we would not want to be resuscitated or ventilated. I was given oxygen and medication to keep me comfortable and received wonderful care. I fortunately recovered, but I stand by my DNR and feel reassured that when I do reach the end of my life, I will not be subjected to unwanted attempts to prolong it.”

However, prior to and during the pandemic, Compassion in Dying also heard concerning reports of poor or non-existent communication between healthcare professionals and patients about DNR decisions, which caused severe and lasting distress to individuals and families.

Sonya Brown, 51, from Lanarkshire, said:

“I discovered my husband Alan had a DNR by chance when the form was left in a folder on my sofa, after he was discharged from hospital last March. I was overwhelmed when I saw it. At no point did anyone explain that his disease was progressing and this was normal. We felt completely adrift. I felt such guilt about the DNR. I now understand the rationale for one being in place – he was dying of lung cancer and CPR would not have changed that – but what I don’t understand is why no one thought to phone me and talk to me about it, particularly when I couldn’t be with him in hospital because of lockdown. I was totally unprepared for Alan’s death.”

Compassion in Dying has also heard reports of blanket decisions being made unlawfully on the basis of age alone, as well as confusion and misunderstanding among healthcare professionals about how to make or implement DNR decisions.

Callers who wanted to refuse CPR in future also reported a lack of support to record and share their wishes. Others were concerned that their wishes may not be known about by doctors or followed if they became seriously ill, particularly with Covid-19 restrictions preventing face-to-face meetings and family not being allowed to visit and advocate for loved ones in hospital.

Polling commissioned by Compassion in Dying in September 2020 found low levels of public awareness on DNR decisions, including that:

  • Only 37% were aware that a DNR decision is made if a clinician thinks that attempting CPR will do more harm than good
  • Only 33% were aware that a DNR decision must be explained to a patient and/or their family
  • Only 35% were aware that a patient will still continue to receive other care if a DNR decision is made

However, more than three-quarters (77%) said they would either welcome or be willing to explore the topic of DNR if it was raised by a healthcare professional. Just 6% said they would not want to talk about it.

NHS England and Improvement last week published updated information on DNR decisions, after Compassion in Dying and Kate Masters last year threatened the Health Secretary with legal action over the lack of clear, national guidance on DNRs, which they believe contributed to a proliferation of poor practice during the pandemic.

The charity also joined Resuscitation Council UK, Marie Curie, Sue Ryder and Hospice UK plus over 30 senior and frontline healthcare professionals in supporting a joint public statement last week on the importance of DNR decisions and the need to learn lessons from the pandemic to ensure the benefits are not undermined by cases of poor and unlawful practice.

Usha Grieve, Director of Partnerships and Services at Compassion in Dying, said:

“The experiences of the people we have supported in recent years and during the pandemic demonstrate clearly the value of DNR decisions when they are made appropriately and communicated sensitively, and the devastation caused when they are not. Covid-19 has highlighted and worsened longstanding problems with DNR decision-making and communication, which have proliferated under the intense pressure felt by healthcare professionals and services, and a lack of clear, national guidance when it was most needed.

“Collaboration is required across health and social care, policy-makers and the voluntary sector to continue challenging poor practice, just as we must proudly support those who want to refuse treatments such as CPR. Today we join the CQC in calling for clear, accessible information and training for health and care professionals on DNR decisions; for conversations about DNR and other end-of-life decisions to become everyone’s responsibility in healthcare; for a public health campaign to increase awareness and understanding of DNR decisions; for record-keeping and sharing to be urgently improved; and for DNR discussions to take place within the context of someone’s wider priorities and wishes. Compassion in Dying stands ready to support the delivery of the CQC’s recommendations and to offer our expertise to the soon-to-be established Ministerial Oversight Group.

“Individuals should always be at the heart of decisions about their care and treatment, and if we are to ensure end-of-life care is truly person-centred, then we cannot shy away from having important DNR conversations as early as possible in an honest and sensitive way. Coronavirus can and should be seen as a catalyst to forge a more personalised, compassionate approach to DNR conversations and other end-of-life decisions.”

***ENDS***

For more information or for interview requests please contact Ellie Ball, Media & Campaigns Manager at Compassion in Dying at ellie.ball@compassionindying.org.uk or 07725 433 025. Interviews are available with spokespeople and people with personal experiences.

Notes to Editor:

Compassion in Dying’s report ‘Better understanding, better outcomes: what we’ve learned about DNACPR decisions before and during the Coronavirus pandemic’ can be downloaded here: compassionindying.org.uk/wp-content/uploads/2021/03/Better-Understanding-Better-Outcomes-DNACPR-decisions-before-and-during-the-pandemic.pdf 

The Care Quality Commission’s report, which Compassion in Dying has also contributed to, ‘Protect, respect connect – decisions about living and dying well during COVID-19: CQC’s review of ‘do not attempt cardiopulmonary resuscitation’ decisions during the COVID 19 pandemic’ can be downloaded here: cqc.org.uk/publications/themed-work/dnacpr-report

The two organisations are discussing their findings and recommendations on DNR and the importance of end of life decisions and conversations using #TalkEndOfLifeCare.

DNR queries to Compassion in Dying

The proportion of queries mentioning CPR and DNR to Compassion in Dying’s free, nurse-led information line more than doubled from 6% in 2019 to 13% in 2020. The highest proportion of calls on the topic last year was in September, at 16%, corresponding with an increase in media mentions of DNR decisions. The proportion of calls on DNR was over three times higher in September 2020 than the same month the previous year (5%).

YouGov polling

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2026 adults. Fieldwork was undertaken between 16th – 17th September 2020. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) decisions, also known as DNR (Do Not Resuscitate) or DNAR (Do Not Attempt Resuscitation) decisions

DNACPR decisions are made by a clinician to prevent people from being given CPR inappropriately, when it could do more harm than good. The decision is usually recorded in a form, which tells other healthcare professionals about the decision not to attempt CPR. If someone has a DNACPR decision, they will still be given all other treatments that are deemed appropriate, including other types of life-sustaining treatment, and treatment to keep them pain-free and comfortable. By law, a DNACPR decision must be made on an individual basis and communicated clearly to a patient, or if they lack mental capacity, those close to them.

People can decide in advance if they do not wish to receive CPR. They can ask their doctor to record this refusal in a DNACPR or similar form. If a person wants this refusal to be legally binding they should include it in an Advance Decision.

Living Wills (Advance Decisions to Refuse Treatment)

Advance Decisions to Refuse Treatment, commonly known as living wills or advance directives, are legally binding documents which allow an individual to record any medical treatments they do not want to be given in future, including CPR, in case they later lack capacity and cannot make or communicate such a decision. Providing an Advance Decision is valid and applicable, it is legally binding under the Mental Capacity Act (2005).

How to make your wishes for care and treatment known if you get coronavirus

Compassion in Dying’s tailored information, developed with lawyers and clinicians, can be found on our website.

About Compassion in Dying

We can help you prepare for the end of life. How to talk about it, plan for it, and record your wishes.

We help people through our free information line, publications and resources, and through our work with diverse communities. We specialise in supporting people to make Advance Decisions (‘Living Wills’) and to talk about their goals and priorities when living with a life-changing illness. Our free MyDecisions.org.uk website helps people to record their wishes for care in a legally binding way.

Have any questions? Talk to us.
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