It is important for people to be able to talk about their care so that they have the chance to express their wishes about how they want to be treated if they become seriously ill or are approaching the end of their life.
This should be done in full consultation with their family and/or carers, and health and care professionals so everyone is aware of how they wish to be treated and what matters most to them. This includes whether they would want to be resuscitated if their heart stops or they stop breathing.
Putting a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision in place is meant to be a positive, empowering act. When done well, it can help people to feel reassured that their wishes will be respected, and that they will be supported to experience a dignified and peaceful death.
At the beginning of the pandemic, there were concerns that DNACPR decisions were being made without involving people or their families, and were being applied to groups of people, rather than taking into account each person’s individual circumstances. There were particular concerns that this was affecting people with a learning disability and older people.
In October 2020, the Department for Health and Social Care commissioned CQC, under section 48 of the Health and Social Care Act 2008, to conduct a special review of DNACPR decisions taken during the COVID-19 pandemic.
Through our review we have looked at how DNACPR decisions were made, within the context of advance care planning, across all types of health and care sectors, including care homes, primary care and hospitals. We have also explored how DNACPR guidance was implemented.
In December 2020, we published an interim report that set out our progress up to that point and our expectations around DNACPR.
This final report sets out what we found through our review. We focus on the impact on people and their human rights, and we make recommendations for change.
Background
What is advance care planning?
Advance care planning provides people with 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 cardiopulmonary resuscitation (CPR) if their heart stops or they stop breathing.
Thinking and talking about dying can be a daunting prospect, and many people may find it overwhelming to think about what they want to happen at the end of their lives. But it is important for each person to talk about their thoughts and wishes with their family, loved ones, carers and professionals so they know how the person wishes to be treated. Thinking and talking about this as part of a holistic discussion about care can make this easier.
What is cardiopulmonary resuscitation?
CPR is an emergency procedure that aims to restart a person’s heart if it stops beating or they stop breathing. It can involve chest compressions, delivery of high-voltage electric shocks across the chest, attempts to ventilate the lungs and injection of drugs.
CPR is an invasive and traumatic medical intervention and most CPR is unsuccessful. In most hospitals the average proportion of people who survive is about 15% to 20%; out of hospital the survival rate is lower, around 5% to 10%. Due to the nature of the treatment, in some circumstances CPR can do more harm than good. In some cases, CPR can cause injuries such as punctured lungs, broken ribs and bruising.
In creating an advance care plan a person can tell their family, loved ones and healthcare professionals whether or not they would want to receive CPR. If they don’t, they can express their wishes through a DNACPR decision.
What are DNACPR decisions?
A DNACPR decision is an instruction to healthcare professionals involved in a person’s care not to attempt CPR. DNACPR decisions are intended to be a positive intervention. They are designed to protect people from unnecessary suffering by receiving CPR that they don’t want, that won’t work or where the harm outweighs the benefits.
Every decision about whether or not a person should receive CPR must be made after careful assessment of each individual’s situation. This should be done in consultation with the person and, if the person agrees, their family. It should never be applied to groups of people (known as ‘blanket’ DNACPR decisions).
DNACPR decisions are based on clinical judgement and must be signed off by the most senior clinician responsible for a person’s care, as defined by local policy. However, the law is clear that these decisions should be made with the person wherever possible. If people are able to make decisions around their care, and do not wish to receive CPR, they can make an advance decision to refuse CPR.
Decisions about CPR must be free from any discrimination, for example in respect of a disability, and not based on a professional’s subjective view of a person’s quality of life. Where people do not have the capacity to give their views about whether they would want CPR, then the views of their family or their chosen representatives must be taken into account, unless there are convincing reasons why this cannot happen, (for example an emergency situation where relatives cannot be contacted). Each decision is unique and is to be guided by the quality of future life that the person themselves would regard as acceptable. It should provide reassurance to the family that their loved ones’ wishes will be respected.
A DNACPR decision only relates to CPR. It does not mean that other care and treatment would be stopped or not provided. A DNACPR decision must not be allowed to compromise high-quality delivery of any other aspect of care.
Advance care planning with ReSPECT
ReSPECT is a good example of an advance care planning process that, when done well, can support everyone to make decisions around their future care and treatment. A type of treatment escalation plan, ReSPECT helps to focus conversations around people’s wishes and preferences. It is designed to help people make personalised recommendations for their clinical care and treatment in a future emergency, when they may not be able to make or express their choices. This can include whether or not to be taken to hospital, whether or not to be admitted to critical care or placed on a ventilator.
These recommendations are created through conversations between a person and their family, loved ones and health and care professionals, so everyone understands what matters to the person and what is realistic in terms of their care and treatment. As part of these conversations, there may be discussions about whether to attempt CPR if their heart stops or they stop breathing.
People’s preferences and the recommendations of their healthcare team, including any decisions around whether or not they should receive CPR, are recorded on a non-legally binding form. People can keep this form, and review and adapt it if circumstances change.
First introduced by the Resuscitation Council in 2016, the ReSPECT process and form has been adopted by a number of health and social care organisations across England. The aim is to encourage health and care professionals to break down the barriers and to hold open and honest conversations with the people they care for about their wishes for care and treatment in an emergency.
Human rights, equality and DNACPR decisions
Putting in place blanket DNACPR decisions, not discussing with people whether or not they want CPR to be attempted, and people not understanding when a DNACPR decision is in place, are all human rights issues and need to be recognised as such.
Article 2 of the European Convention on Human Rights protects people’s right to life. Under Article 2, public authorities have positive obligations to protect life, including “a duty to prevent avoidable deaths.”
Though clinicians can make DNACPR decisions, if these decisions are made in ways that do not protect people’s rights to life, it is possible that this may be a breach of Article 2. This may happen, for example, by putting a DNACPR decision in place without the knowledge of the person and/or those close to them and then failing to provide CPR should the person’s heart stop beating. Not consulting with the person or their representatives when making a DNACPR decision also risks breaching Article 8 of the of the European Convention on Human Rights, which protects their right to respect for their private and family life.
All DNACPR decisions must be made on an individual basis according to need. Applying ‘blanket’ DNACPR decisions to groups of people in particular equality groups, such as people with a learning disability or older people, whether or not a DNACPR form has been completed, is potentially discriminatory and unlawful.
If DNACPR decisions are made based on assumptions about people who are disabled or an older person, this could also breach Article 14 of the European Convention on Human Rights – the right not to be discriminated against in connection with other human rights.
Poor DNACPR decisions that put people’s human rights at risk have long been an issue in England. This has been a particular concern in relation to people who are disabled (including people with physical disability and people with a learning disability) and/or older people.
The December 2020 Women and Equalities Select Committee discussed concerns about inappropriate use of DNACPR decisions in the early part of the pandemic. It looked at the impact of these on people’s ability to access life-saving treatment for COVID-19, particularly for older people and people with a learning disability in social care settings and hospitals. While action was taken to address this, the committee found that there were concerns that DNACPR decisions had potentially been used in a discriminatory way. It also found that this showed a concerning disregard for disabled people.
Also in December 2020, the British Institute of Human Rights (BIHR) published initial findings of their work looking at the human rights implications of COVID-19. Like the Women and Equalities Select Committee, the report highlighted concerns around DNACPR practices during the early stages of the pandemic, particularly in relation to older people and people with disabilities. It highlighted evidence that pressures on the health and care providers had potentially led to blanket DNACPR decisions being issued for people with a learning disability, or DNACPR notices being issued without proper consultation.
Coronavirus (COVID-19) pandemic and concerns around DNACPR decisions
At the beginning of the pandemic we were concerned that a combination of unprecedented pressure on care providers, confusion around guidance, and miscommunication may have led to DNACPR decisions being incorrectly conflated with other clinical assessments around critical care. This included concerns that inappropriate or blanket DNACPR decisions were being issued.
Together with the British Medical Association, Care Provider Alliance and Royal College of General Practitioners, we wrote to adult social care providers and GP practices on 30 March 2020. This statement reminded all providers that it was unacceptable for advance care plans, with or without a completed DNACPR form, to be applied to groups of people of any description. NHS England then wrote to all NHS trusts, clinical commissioning groups, GP practices, primary care networks and community health providers on 7 April to reiterate this.
Some people we spoke with during our review highlighted that, where there were concerns that inappropriate or blanket DNACPR decisions were in place, people and their families felt unable to challenge the issue or were unaware that it was inappropriate. We also heard that people working in adult social care settings felt overwhelmed, overloaded and unsupported in raising concerns. In many cases it was not clear who to raise concerns with. Some people told us that care providers had challenged blanket DNACPR decisions, but they felt no one was listening.
Concerns around DNACPR decisions are not new. Before the pandemic of COVID-19 there had been concerns about aspects of DNACPR decisions. These concerns revolved around ensuring that:
- The senior clinician responsible has made the decision in consultation with the person and in line with the Mental Capacity Act 2005.
- The decision is based on clinical judgement, is free from any discrimination, in line with the Equality Act 2010 and Human Rights 1998, and is not based on a subjective view of a person’s quality of life.
- The decision has been communicated in a way that is accessible and meets people’s needs.
- Professionals have the time, support and training to be able to have the sensitive and ongoing conversations needed to take people’s preferences into account.
- People's legal rights are understood by the public and by care workers.
How we carried out our review
An overview of how we carried out the review is set out below. The appendix has full details.
Our review focused on three areas:
- People at the centre: How are providers and systems putting people at the centre of their care in approaches to DNACPR decisions to protect human rights, protect people from discrimination and meet people’s individual needs? What have people’s experiences been since the start of the pandemic?
- Shared vision, values, governance and leadership: How have providers and the health and care system worked in partnership to influence and agree a shared approach for the use of DNACPR decisions that protects human rights, gives equal access to care and treatment and prevents avoidable deaths? What are the enablers and barriers for the appropriate use of DNACPR decisions?
- Workforce capacity and capability: How do providers and the system work together to ensure that clinicians, professionals and workers involved in the use of DNACPR decisions have the right knowledge, skills and tools to deliver personalised approaches to DNACPR decisions in line with the relevant legislation, and how are staff and people supported to raise concerns in order to improve care?
We used the following methods:
- A review of existing literature, guidance and evidence to understand what was already known about the use of DNACPR decisions before the pandemic and what impact they have had on people’s experiences during the pandemic.
- Initial conversations with nearly 50 stakeholders who have a specific interest in the scope of the review. These included organisations that represent or advocate on behalf of the public and family, carers, care providers, and care professionals.
- A voluntary information request sent to around 25,000 adult social care providers. While responsibility for making DNACPR decisions does not predominantly rest with adult social care providers, we asked them a range of questions to understand their views of the experiences of people in these settings. We analysed 2,048 responses, which were received from 7 December 2020 to 21 December 2020. The relatively low response rate affects our confidence in the findings and means the results may not be generalisable. However, it is important to record and share the experiences of people working in services.
- With the support of voluntary sector partners we ran several public surveys to ask people who use services and their families and carers about their experiences of DNACPR decisions during the pandemic. We analysed 613 responses, which is not representative of all the cases of people across the country. However, it does allow us to capture the lived experiences of those who have had a DNACPR decision, or their families/carers.
- We carried out fieldwork to explore how primary, secondary, social care and system partners worked together in seven clinical commissioning group (CCG) areas. These were chosen to cover a cross-section of geographical areas and a mix of demographics. However, the findings are not necessarily representative, but instead they explore individual experiences. In the fieldwork we:
- Carried out an in-depth review of the experiences of seven people – reviewing the relevant care records and, wherever possible, speaking to the person experiencing care and their families, and a range of relevant health and care professionals.
- Reviewed the DNACPR records of 166 people who have been affected since the pandemic. These did not consider every example of DNACPR decisions since the pandemic, but allowed us to consider a larger number of decisions.
- Held 156 interviews and focus groups with clinicians, professionals and workers from different roles and organisations involved in providing care.
- Spoke to commissioners and system leaders to explore practice across the system, collaboration and how oversight arrangements ensure best practice in DNACPR decisions.
- Spoke to local advocacy organisations that have engaged with the public and providers over the use of DNACPR decisions to share our emerging findings and ask for feedback on these, and thoughts on recommendations.
Action we took
As a result of concerns found during our fieldwork, we carried out two focused inspections and made recommendations for improvement.
For concerns raised through our information request to adult social care providers we passed this information on to inspectors who contacted the providers to find out if action had been taken. If particular concerns about quality or safety were raised through these conversations, we:
- Checked if the provider raised their concerns with the relevant medical professionals involved in signing the DNACPR decision, and advised them that they needed to do this if not.
- Considered whether the provider had breached CQC’s regulations.
- Will take appropriate action where breaches in CQC’s regulations are found.
