DNACPR decisions: vital part of end-of-life care but communication failures undermine older people’s trust in NHS, new research finds

• New research from Compassion in Dying and Health Ombudsman confirms decisions not to attempt CPR are crucial part of end-of-life care that protect people from often futile treatment
• But too often, decisions are communicated insensitively, too late, or not at all
• Compassion in Dying echoes calls from older people for a national public awareness campaign to ensure patients, families and doctors feel equipped to have honest, timely conversations about DNACPR
• Comes three years after charity joined CQC in raising alarm on longstanding issues with decision-making and communication of DNACPRs

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation, sometimes known as DNAR or DNR) decisions are an essential part of end-of-life care but older people face unacceptable failures in how they are communicated, new research by Compassion in Dying and the Parliamentary and Health Service Ombudsman (PHSO, or Health Ombudsman) reveals today (Thursday 14 March 2024).

The national charity has today joined the Health Ombudsman in calling for urgent improvements in order to ensure that DNACPR decisions are made appropriately and lawfully, that conversations happen in a timely, open and person-centred way and that discussions occur within the context of other planning for an individual’s future healthcare and treatment.

This comes as both organisations publish new research into people’s experiences of DNACPR decisions. Compassion in Dying’s report, What people need from a DNACPR decision and discussion, focuses specifically on older people and was commissioned by the Health Ombudsman to inform their work. The charity has long raised concerns about issues with the decision-making, record-keeping and communication of DNACPR decisions and the devastating impact this can have on individuals and their loved ones – including in a 2021 report published alongside the Care Quality Commission’s (CQC) review into DNACPR decisions during the Covid-19 pandemic.

CPR is a procedure that may be attempted if a person’s heart or breathing stops unexpectedly. It is an invasive treatment which, if successful, rarely returns people to their previous quality of life. In hospital, around one in four people survive and leave hospital after having CPR (with survival rates usually lower in other settings), and those who do may never return to the health they had before. For some, it can cause permanent brain damage.

DNACPR decisions therefore exist to protect people from a treatment that is often futile and may prolong or cause suffering at the end of their lives. They are routine, everyday clinical decisions made as part of good end-of-life care. However, as Compassion in Dying and the Health Ombudsman reveal today, significant failures in how these decisions are communicated to individuals and families risk eroding trust in the professionals caring for them and in the NHS more broadly.

Conrad Jenkin, 95, a Navy veteran, father of four and grandfather of 10 from Petersfield, took part in Compassion in Dying’s research. Mr Jenkin said:

“My wife Jennifer was 87 when she had what the doctor called a ‘massive stroke’ and was taken to hospital. We only learnt after she came home that she had been marked ‘DNR’ – we found it in the bits of paper she’d been sent away with. The Registrar had written on the form that he had informed the Next of Kin. He hadn’t, nor had he spoken to our daughter who was also present at hospital. At the time I felt distressed and truly shocked. I didn’t know why he’d made that decision and why he said he had informed the Next of Kin when he had not. I know doctors have difficult jobs and I’m not upset at him for making the decision, but I am upset at him for marking her as ‘DNR’ without telling us and then recording that he had.”

Like Mr Jenkin, all participants in Compassion in Dying’s research valued DNACPR decisions and wanted to play a role in the conversation. Of those who had negative experiences, for most people their distress was caused by a lack of clear communication, conversations happening too late or in a rushed or insensitive manner, often during a period of high stress – not by the decision itself. Others shared the devastation they felt when a DNACPR decision already in place was ignored – leading to their loved one being subjected to unwanted CPR, denying them a peaceful death and causing lasting trauma to those close to them.

When people were able to have an open, timely conversation with a doctor about their wishes for CPR, without the stress of dealing with an acute health crisis, they felt respected, reassured and better prepared for the future.

The older people who participated in the research called for clear recommendations, supported by Compassion in Dying and echoed by the Health Ombudsman. They include:

• Conversations about DNACPR decisions to happen earlier in life, before a health crisis and in a normalised, routine way, as part of a broader conversation about a person’s wishes and concerns for the end of life
• Doctors to follow the law and always communicate a DNACPR decision when one has been made
• Training and support for clinicians to ensure these important conversations happen with compassion
• Better public information and awareness, including a public health campaign, to help people understand how DNACPR decisions work and why they matter – including what CPR involves and its success rates

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

“DNACPR decisions are a crucial part of end-of-life care. They exist to protect people from an invasive treatment that can often do more harm than good, sometimes merely prolonging the dying process. For many people this is not what they want. Older people told us very clearly in our research that they want the opportunity to consider if CPR is right for them, and they want to be involved in these conversations. A great many people gain real peace of mind from knowing they have a DNACPR decision in place.

“But what is not working is how DNACPR decisions are often communicated: insensitively, far too late, or not at all. Poor communication is causing harm and eroding trust between people and the health professionals caring for them. Unfortunately these issues are far from new and despite Compassion in Dying, the CQC and others campaigning for change for several years, communication failures have persisted. Alongside the Health Ombudsman, we also call for all outstanding recommendations in the CQC’s report from the pandemic to be implemented.

“The older people we spoke to, like all of us, simply want to be treated like a human being, not a tick box exercise. People want and need DNACPR discussions to happen earlier, before a crisis, on a bedrock of compassion, empathy and honesty. A public health campaign around DNACPR decisions, for instance, would help ensure both doctors and patients feel equipped to have these important conversations in a timely way. We need urgent cultural and practical changes to right these wrongs and forge a more personalised, compassionate approach to DNACPR conversations and end-of-life decisions.”

***ENDS***

Notes to Editor

For more information, comment or interview requests with Compassion in Dying or people with personal experiences, please contact Molly Pike, Media & Campaigns Officer at Compassion in Dying at molly.pike@compassionindying.org.uk or 07929 731 181.

The Parliamentary and Health Service Ombudsman (PHSO, or Health Ombudsman) commissioned Compassion in Dying to carry out new research into older people’s experiences of DNACPR decisions and find out what they would like to see done differently in the future. Compassion in Dying’s findings have been used to inform the Health Ombudsman’s new report, also released today: “End of life care: improving ‘do not attempt CPR’ conversations for everyone”. The report also draws on research into the experiences of people with learning disabilities undertaken by the British Institute of Human Rights (BIHR), which is also published today.

For media requests for the Health Ombudsman, including a copy of their report, please contact John McDougall, Communications Manager, Parliamentary and Health Service Ombudsman at 0300 061 4465, 07587 976 170 or john.mcdougall@ombudsman.org.uk.

For media requests for the British Institute of Human Rights, please contact press@bihr.org.uk or a voice message can be logged on 020 3039 3646 and will be redirected.

About Compassion in Dying

Compassion in Dying is a national charity that supports people to start honest conversations about death and dying, and record and revisit their wishes whenever they want to. We amplify people’s voices, shift attitudes and drive changes to the healthcare system, so people’s end-of-life decisions are heard, understood and respected when it matters most.

We want people to be in control of their end-of-life decisions because there is no-one better to make them.

Any questions? Our specialist nurse-led team is available to help from 11am to 3pm, Monday to Thursday. Call for free on 0800 999 2434.

Methodology

Compassion in Dying invited over 10,000 people who had received support from the charity to take part in the research. Participants were then selected based on the criteria below and their experiences, to ensure a breadth of perspectives were included. We held in-depth discussions with 17 people from across England. 15 people joined focus group discussions. A further two people who were not able to join online were interviewed by telephone. The groups comprised of:

• older people (70+) who had a negative experience of DNACPR discussions and/ or decisions
• older people (70+) who had a positive experience of DNACPR discussions and/ or decisions
• family members/carers of older people (70+) who had experience of DNACPR discussions and/or decisions