Executive summary
Why we have written this report
During the COVID-19 pandemic we received a higher number of complaints than normal about communication of ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions.
Our casework and further research have shown that while the pandemic highlighted problems with DNACPR conversations, as with many other issues, the problem is not restricted to that time.
Flaws have been exposed in the end-of-life care system, showing that:
- advance care conversations are not taking place in the ideal setting for patients or healthcare staff
- healthcare staff are not being trained with all the skills needed to have these conversations
- patients and their families and carers are not always getting the right support to have a balanced discussion that respects their rights as individuals.
Almost all of the DNACPR complaints brought to us were from or on behalf of disabled people or older people. These are also the groups of people who were most affected by COVID-19 as a virus (Office for National Statistics, ‘Coronavirus (COVID-19) related deaths by disability status, England and Wales: 2 March to July 2020’). These included a case we upheld, where the reason given for the DNACPR was the person’s learning disability and mental health condition.
Our casework also told us that:
- patients and their families and carers were consistently not involved in DNACPR decisions during the pandemic and healthcare professionals failed to communicate with them
- records were not checked for existing DNACPR decisions
- DNACPR records did not follow patients to different health settings
- patients were not getting support for a range of communication needs.
We found evidence in our casework of the same themes coming up before and after the pandemic.
Our casework evidence raises serious questions about the quality of communication and whether a human rights-led approach is being taken to patients’ care.
What we did
To help answer these questions, we commissioned the British Institute of Human Rights (BIHR) and Compassion in Dying to carry out additional independent research. We wanted to work with people with learning disabilities and older people to inform our research and recommendations.
We also carried out a survey of doctors in England to understand their views, and held focus groups and interviews with nurses working across learning disability, geriatric and palliative care.
We combined the output from this work with our casework findings to create the evidence base for this report.
What we found
Our main findings are:
- People are not told as a matter of course (as is legally required) that a DNACPR decision has been made. This causes distress and affects people’s trust in the NHS and doctors.
- Conversations about end-of-life are often held too late. Acute settings and A&E are not the best places for sensitive and thorough conversations, but this is where most conversations happen. Simple changes to common practice in the health service could support these conversations taking place before emergency settings.
- When DNACPR decisions are left too late, it often leaves conversations to the patient’s family, leaving the patient out of the conversation entirely. This causes distress to families or carers and can leave people with a sense of injustice, leading to complaints to us.
- There is a lack of accessible information given at the time or before DNACPR conversations take place.
- There are issues with record-keeping and documenting decisions. Correct and up-to-date DNACPR decisions do not follow a patient throughout the medical system. While a DNACPR decision should be logged on patient records, this cannot be accessed across the whole health system and there are often problems with advance decisions being logged, updated and respected. There is also not enough space on most forms to accurately record conversations.
- People voiced genuine fears about ageist and ableist attitudes and behaviours in the NHS.
- The general public are often unaware of who is responsible for making a DNACPR decision and what treatment it covers. This leads to frustration and distress when people believe it is their decision and not a clinical decision.
Our evidence suggests that in addition to lack of time, inhibitions in wider society to talking about death and dying can mean that conversations about DNACPR happen later in care and often in emergency settings.
The NHS describes a good death as “the best death that can be achieved in the context of the individual’s clinical diagnosis and symptoms, as well as the specific social, cultural and spiritual circumstances, taking into consideration patient and carer wishes and professional expertise” (NHS England, ‘What is a good death?’). Changing our perceptions of end-of-life care is linked to the way we view those with less power and their right to have a ‘good death’.
The principles seen in best practice around end-of-life care, including empathy, good communication, time for human connection and personalised care, are examples of the best the health service has to offer. We have consistently spoken to doctors and healthcare staff working in challenging environments, continuing to make sure people die with dignity, respect and kindness.
We believe that if the principles often shown in end-of-life care settings were replicated in all settings where patients may reach the end of their lives, this would improve the fundamental aspects of healthcare.
What needs to happen next
Our recommendations are designed to make sure the NHS enables empathetic and thorough conversations that respect individuals’ rights, and that staff are supported to do this.
Recommendations have been informed by all of the contributors to this report.
Training
- All CPR training for all doctors and nurses should include scenario-based training on DNACPR (aimed at all NHS-funded providers). This part of the training should be co-designed with older people and disabled people.
Communication
- Integrated Care Boards (ICBs) should make sure that accessible communication materials, which meet the needs of their population, can be accessed through health settings to support staff, patients, families and carers when having DNACPR conversations.
- The Royal College of GPs, the Royal College of Physicians and the Royal College of Nursing should develop guidance for GPs, physicians and nurses working in acute care, to promote earlier conversations with patients, families and carers about wishes at the end of life and about advance care planning.
- NHS England and ICBs should expand the number and type of staff who can formally support DNACPR conversations in multiple settings. This should include nursing staff, acute liaison nurses, local advocacy services and learning disability nurses. NHS England and ICBs should also recognise the importance of families and carers in supporting these conversations.
Regulation
- The Care Quality Commission (CQC) should update cross-sector guidance underpinning regulations to include planning for health inequalities in end-of-life care.
- The CQC should make sure that assessment of providers’ compliance with standards of good practice around DNACPR is strengthened in its regulation of all services, with a particular focus on improvement in secondary care services.
Record-keeping
- NHS England should make sure, for advance care planning conversations, the primary care electronic patient record (EPR) is the single place for holding end-of-life care plans and DNACPR records. This should feed into the multidisciplinary shared care record and be accessible across all health settings. This needs to enable immediate digital access across all NHS provider organisations for healthcare staff and patients. Improving the interoperability of patient records would have far-ranging benefits beyond end-of-life care planning and achieving a single shared care record should be the ambition as soon as is practically possible.
- NHS England, ICBs and trusts should make sure DNACPR decision-making tools include clear guidance on legal duties for doctors.
- NHS England and healthcare providers should make sure there is more space to document conversations and decisions on DNACPR decision-making forms.
Overarching recommendation
- We call for all outstanding recommendations in CQC’s ‘Protect, respect, connect – decisions about living and dying well during COVID-19’ to be implemented.
Our commitment
We will train all Ombudsman staff on disability awareness in our 2024 to 2025 Active Inclusion learning programme, including learning disability and neurodiversity. This should mean staff will be able to recognise when these characteristics arise as a factor in a complaint and better understand the lived experiences of individuals and families. We will continue to progress work to make our services more accessible to disabled people, older adults and people affected by issues in this report.