Introduction
Why we have written this report
During the COVID-19 pandemic we received more complaints about DNACPR notices than we had previously. The number of complaints upheld increased from single figures each year to double figures during the pandemic.
Complaints we received during this time highlighted issues in applying DNACPR notices and communicating about them.
Almost all of the complaints were from or on behalf of disabled people or older people, who were most affected by COVID-19. This raised questions about the effectiveness of communication with these groups, particularly during a national crisis when people using the NHS could not have their usual advocates and carers with them. The government has since recognised the impact of visitation restrictions and changed the law to allow visitation as part of care in future crises (Department of Health and Social Care, ‘Government to legally make visiting a part of care’).
Although issues involving DNACPR notices were worsened and highlighted by the pressures of COVID-19, they were not confined to the pandemic. Our casework evidence and research show that some of the same issues were present before that time and are still prevalent. We wanted to understand what is causing these consistent failings, particularly for disabled people and older people.
Due to the attention brought to the issue of blanket DNACPR decisions without consultation, the CQC published a substantive report in March 2021 (‘Protect, respect, connect – decisions about living and dying well during COVID-19’) and the Ministerial Oversight Group (MOG) on Do Not Attempt Cardiopulmonary Resuscitation decisions was created as an outcome to develop and implement policy changes. The CQC report and the MOG developed recommendations to make sure incidents like those at the start of the pandemic never happened again.
The MOG has not met since May 2022 (Department of Health and Social Care, ‘17 May Summary note of meeting’). This has left an accountability gap, as the organisations responsible for implementing recommendations are no longer reporting on progress.
This report builds on previous work by the CQC, with the British Institute of Human Rights (BIHR) and Compassion in Dying. Organisations responsible for patient safety and advocacy, such as the Health Services Safety Investigations Body (HSSIB), have also recently produced reports and recommendations on caring for adults with a learning disability in hospital. A lack of practical changes and a failure to embed recommendations in the health service are still areas for concern, particularly where culture prevents change and poor practice continues.
As we learn from the experiences of the COVID-19 pandemic, it is important to acknowledge the extreme pressures on our health and social care systems and on frontline staff, during and following the pandemic period, as well as the painful impact on individuals and families.
There is widespread confusion and misunderstanding about DNACPR processes for patients and doctors, which can mean people are not prepared or supported around end-of-life decisions. This report and recommendations draw on significant evidence of the experiences and preferences of older people, disabled people and healthcare staff. It aims to shine a spotlight on this issue and show a path towards cultural and systemic change.
About DNACPR
DNACPR stands for do not attempt cardiopulmonary resuscitation.
DNACPR means if your heart or breathing stops, your healthcare team will not try to restart them. Cardiopulmonary resuscitation (CPR) is one intervention available to resuscitate patients and has a relatively low success rate, an average of 12% for out-of-hospital cardiac arrests to 24-40% for in-hospital arrests (British Medical Journal (BMJ), ‘Patients overestimate the success of CPR’).
DNACPR is sometimes called DNAR (do not attempt resuscitation) or DNR (do not resuscitate). We use DNACPR in this report.
Decisions about not resuscitating a patient, or about putting a DNACPR notice on a patient’s record, are made by doctors and do not need patient consent. This can be an immediate clinical decision made when a patient is seriously unwell, or a decision that goes on a patient’s records in advance and affects treatment at a later stage. But it is a legal requirement for doctors to consult with a patient about a DNACPR decision if they have capacity, and with their next of kin otherwise.
Patients will be resuscitated unless they have a DNACPR notice on their records.
A DNACPR notice refers to CPR only. It should not mean that someone will be denied any other care and treatment.
DNACPR decisions should be based on an individual’s health and the likelihood that they will have a positive outcome from CPR. They should never be applied to groups of people (known as ‘blanket’ DNACPR decisions).
About advance care planning
The CQC (‘Protect, respect, connect: decisions about living and dying well during COVID-19’) says advance care planning gives people:
“an opportunity to think about what matters most to them and what level of care and treatment they wish to receive. These discussions can take place at any time. An advance statement may include details such as:
- where and how they would like to be cared for, for example, at home or in a hospital, a nursing home, or a hospice
- how they want any religious or spiritual beliefs to be reflected in their care
- practical issues, for example, who will look after their pets if they become ill
- what healthcare treatments they want, or do not want, as they near the end of their life
- who they want to be with near the end of their life.
As part of these conversations, there may be discussions about whether to attempt CPR if their heart stops or they stop breathing.”
The ReSPECT process or form is commonly used to guide advance care conversations in healthcare settings. We mention it throughout this report.
Language used in this report
Language is an important step in recognising people with respect and dignity. We have chosen to use the terms preferred by the people we have worked with in producing this report.
We use person-first language (for example, ‘people with Down’s syndrome’) when talking about the experiences of people with learning disabilities. This was the language chosen and used by the people we worked with, including people with learning disabilities, and is commonly used across the health service.
We use identity-first language (for example, ‘deaf people’) when talking about disabled people, including all disabilities. This was the language used by the people we worked with and organisations such as the Equality and Human Rights Commission. We recognise its connection to the social model of disability, which says disability is created by an inaccessible society.
We use the word ‘ageism’ to talk about discrimination based on age. We use the word ‘ableism’ to talk about discrimination based on disability.
Blanket DNACPR decisions and human rights
On 20 March 2020, the National Institute for Health and Care Excellence (NICE) released guidance stating: “all adults on admission to hospital, irrespective of COVID-19 status, should be assessed for frailty using the Clinical Frailty Scale (CFS) and that comorbidities and underlying health conditions should be considered.”
On 25 March 2020, NICE issued COVID-19 rapid guidance for critical care in adults [NG159] to clarify that the CFS should not be used in isolation to direct clinical decision-making, and that doctors should make decisions about care together with patients and their carers where possible.
Different interpretations of this guidance led to allegations of blanket DNACPR decisions in hospital and residential care settings, especially for disabled people and older people (CQC, ‘Protect, respect, connect'). Blanket DNACPR decisions are where DNACPR notices are put on groups of people’s records because of their age, health condition or disability without considering them as individuals and without speaking to them directly. The lack of conversation and any discrimination involved in these decisions is illegal and breaches individuals’ human rights. These rights and associated laws are outlined below.
Human rights law
R (Tracey) v Cambridge University Hospitals NHS Foundation Trust and others
David Tracey challenged a DNACPR notice on his wife Janet Tracey’s medical file. She was diagnosed with terminal lung cancer and involved in a serious car accident the same month. Janet Tracey was considered to have legal capacity to make decisions about her care and treatment, but medical staff put a DNACPR notice on her file without her and her family’s knowledge. The Court of Appeal made it clear that in decisions about treatment, including where a patient has a terminal illness, and in DNACPR decisions, Article 8 of the Human Rights Act 1998 applies. This protects the right to respect for private and family life. The court said there should be a presumption in favour of patient involvement in DNACPR decisions:
“The duty to consult involves a discussion, where practicable, about the patient’s wishes and feelings that is better undertaken at the earliest stage of the clinical relationship so that decisions can be reviewed as circumstances change…the duty to consult is integral to the respect for the dignity of the patient”.
Mental Capacity Act duties
Winspear v City Hospitals Sunderland NHS Foundation Trust
Elaine Winspear challenged the decision of medical staff to impose a DNACPR notice on her son Carl (who was 28 years old with cerebral palsy) without his family’s knowledge. The court found this went against his Article 8 rights under the Human Rights Act 1998. The court was clear that section 4(7) of the Mental Capacity Act 2005 (MCA) includes a duty to consult those identified in the section (such as family) unless it is not practical and appropriate to do so.
This means the decision-maker must take active steps to consult, rather than passively considering views that they may be aware of. Failing to meet this duty means the decision-maker cannot rely on the defence in section 5 of the MCA (which protects staff from legal responsibility if they have a reasonable belief that the person lacked capacity) in any claim that the person’s human rights have been breached under the Human Rights Act.
How we did the research
We undertook five different types of research in a ten-month period to develop the evidence for this report. This involved listening to different groups of people to understand why DNACPR service failings keep happening.
- We looked at evidence from cases people have brought to us and analysed the common experiences, themes and issues.
- We carried out a survey of doctors of all specialisms and levels in the health service in England. Over 700 doctors filled in the online survey, which was open for four weeks in summer 2023.
- We commissioned independent research with older people and people with learning disabilities to understand their experiences and make recommendations about how the system could work better. Compassion in Dying and the BIHR held focus groups and interviews from August to November 2023. All participants were paid fairly and equally for their time.
- We held a focus group and interviews with nurses from across England who work with older people, people with learning disabilities and in palliative settings. We explored issues including their involvement in DNACPR decisions and how the process works for people with learning disabilities.
- We looked at reports and research produced in the past five years on DNACPRs and people’s experience of the health system, focusing on disabled people and older people. The reports covered a range of perspectives, from practising doctors to member-led advocacy organisations. We also had conversations with report authors and relevant organisations to help guide and shape our research.
Doing the research in this way helped us make findings in different areas and make sure our approach was fair and balanced.