A change in how British people and health professionals talk about death is needed to avoid delays in crucial conversations about end-of-life care, resulting in traumatic consequences for patients and their families, England’s Health Ombudsman has warned. 

In a new report, End of life care: improving ‘do not attempt CPR’ conversations for everyone, the Parliamentary and Health Service Ombudsman (PHSO) has called for urgent improvements to the process and communication surrounding do not attempt cardiopulmonary resuscitation (DNACPR), so doctors, patients, and their loved ones can make informed choices about their care.  

A DNACPR notice means if someone’s heart or breathing stops, doctors will not attempt resuscitation. The decision is made by a doctor and does not actually require patient consent, but legally a patient must be informed if they have capacity, or their next of kin otherwise.   

The majority of complaints received about the communication of DNACPR notices by PHSO during the Covid-19 pandemic were either from older people or disabled people, or on their behalf.   

Although DNACPR discussions are positive when done in the right way, it is clear this is not always happening and improvements to the discussion process needed. The report found end of life conversations often happen in emergency settings, which is often too late and carried out under extreme stress. Conversations are also left to a patient’s family, and in some instances a patient was left out of the conversation entirely. In some cases, doctors breached people’s human rights by not even informing them or their family that a DNCAPR notice was made.  

The report also uncovered fears about ableist and ageist attitudes and behaviours within the NHS.  

Other key findings included:  

• There is a lack of accessible information given at the time or before DNACPR conversations take place. 
• Issues with record-keeping and documenting decisions, with up-to-date information not following a patient through the medical system. 
• A lack of public awareness about CPR and who is responsible for making a DNACPR decision.   

Commenting on the report, Ombudsman Rob Behrens said: 

“There is a reluctance from British society to have conversations about end-of-life care early enough. We need to normalise these conversations, rather than wait for something drastic to trigger them.  That way doctors, patients and their families can make informed choices about their end-of-life care in a dignified way.

“It is a legal requirement for a doctor to have a conversation about DNACPR. Failing to do so constitutes maladministration and a breach of human rights. It is particularly important for older people and disabled people that care and consideration is given to end of life conversations, to avoid any perceptions that bias has affected decision-making. 

“A person’s age or disability should not impact their human right to be treated with appropriate respect and care, especially on such a critical issue as end-of-life care. Yet people have genuine fears about ageist and ableist attitudes in the NHS.  

“Sadly, there is a lot of misunderstanding and confusion around DNACPR and the NHS needs to make urgent improvements and look at past mistakes when it comes to DNACPR process. As difficult and upsetting as it is, we can all try to help by normalising conversations about our wishes at the end of our lives.” 

 The report includes the story of Sonia Deleon, which highlights the tragic consequences when a DNACPR notice is wrongly applied. Sonia’s sister, Sally-Rose Cyrille brought her complaint to the Ombudsman. 

Sonia, known as Sone, had learning disabilities and schizophrenia and was in full-time residential care. She died following a heart attack at Southend University Hospital, after contracting Covid-19 during the pandemic in 2020 aged 58.  

Sonia was admitted to hospital on three occasions and each time a DNACPR notice was made, but her family were never informed. There was no evidence of any discussions taking place with Sonia’s mother or sister. After Sonia’s death the family found out that the reasons for the notices being made included frailty, having a learning disability, poor physiological reserve, schizophrenia and being dependant for daily activities.  

The Ombudsman recommended the Trust write to Sally-Rose to acknowledge the failings in communication, apologise for the distress caused, and explain what action it will take to prevent these mistakes from happening again. 

Sally-Rose said: 

“I was devastated, shocked and angry. The fact that multiple notices had been placed in Sone’s file without consultation with us, without our knowledge, it was like being hit with a sledgehammer.  

“We only found out when my husband and I were reviewing Sone’s medical notes and I just couldn’t believe it. I burst into tears. I just couldn’t get my head around what had happened. 

“To find out doctors didn’t think it was worth even trying to resuscitate Sone because she had learning difficulties and schizophrenia was just the most unbelievable, devastating bit of information that came out of what had happened. 

“We made it absolutely crystal clear to all the medical team and every single person that we spoke to how vulnerable Sone was.  

“Sone was just full of life, really enjoyed life, despite all the difficulties that she’d experienced as a teenager from the start of her depression and all the trauma that she went through. Sone came out the other end and had just a wonderful spirit that wasn’t broken.” 

The Ombudsman has called for the public and healthcare professionals to normalise conversations about end-of-life care and improve awareness, while also urging the NHS to learn from mistakes. A series of recommendations call for the DNACPR process to be improved and to help support patients and their families, and healthcare staff when having difficult conversations. 

These include training on end-of-life conversations for all medical professionals to help improve timely and sensitive discussions with patients and their families, records of DNACPR decisions need to be held in one, accessible place, and changes to existing DNACPR forms to clarify legal duties for clinicians to consult with patients, families and carers and create more space to document conversations and decisions.  

Hundreds of doctors surveyed by PHSO have called for greater public awareness regarding DNACPR – a message the Ombudsman supports - to highlight the notices, to remove any confusion or misunderstanding about end-of-life care and clarify that survival rates from CPR are poorer than people often assume.  

PHSO’s report coincides with DNACPR research released by Compassion in Dying, a UK charity which helps people plan and record their end-of-life care wishes. PHSO’s work was also aided by independent research undertaken by the British Institute of Human Rights (BIHR) which will be releasing their own report on DNACPR notices.  

PHSO’s report coincides with DNACPR research released by Compassion in Dying, a UK charity which helps people plan and record their end-of-life care wishes. PHSO’s work was also aided by research commissioned from the British Institute of Human Rights (BIHR) which will be releasing their own report on DNACPR notices.  

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 must now be addressed as a matter of urgency.

“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.”

BIHR Chief Executive Officer Sanchita Hosali said:

“Poor decision-making around the use of DNACPR risks breaching people’s legally protected human rights, something people with learning disabilities are sadly all too familiar with. Working directly with people with learning disabilities, their loved ones and supporters, our report powerfully shares their experiences, and fears should they ever need resuscitation.

“We should all stop, listen, and take action on the recommendations, to ensure people with learning disabilities have equal respect for their human rights in healthcare, particularly when critical decisions like DNACPR are being made. As Lara, who took part in our research says ‘I just don’t want this to be something that gets shoved on a shelf and forgotten about.”