The CQC has completed its review of ‘do not attempt cardiopulmonary resuscitation’ decisions during the coronavirus (COVID-19) pandemic and has published its findings on 18 March 2021 CQC report – Protect, respect, connect. It has, rightly, received much publicity which will hopefully mean that the recommendations contained in the report will be followed.
As we have highlighted in a previous blog April 2020 from the beginning of the COVID-19 pandemic, there were concerns that ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions were being made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person’s individual circumstances. The Department of Health and Social Care commissioned the CQC to conduct a special review into these concerns.
The review took place between November 2020 and January 2021 when the CQC heard from over 750 people. The aim of the review was to look at how DNACPR decisions were made, in the context of advance care planning, across all types of health and care services including care homes, primary care and hospitals.
The 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?
People’s experiences of DNACPR decisions varied. Some people felt they had been involved in the decision-making process, as part of a holistic conversation about their care. However, others felt that conversations around whether they would want to receive cardiopulmonary resuscitation (CPR) came out of the blue and that they were not given the time or information to fully understand what was happening or even what a DNACPR was. In some cases, people were not always aware that a DNACPR decision was in place. The CQC commented that this could be hugely distressing for people and their families and/or carers.
Concerns – examples
Applying a DNACPR decision to groups of people of any description (known as ‘blanket’ DNACPR decisions), is potentially discriminatory and unlawful under the Equality Act 2010. People’s rights may also be at risk where individuals are not properly informed or involved in conversations about putting a DNACPR decision in place, or where decisions are not reviewed in a timely way.
Use of blanket DNACPR decisions
At the start of the pandemic, there were concerns that a combination of unprecedented pressure on care providers, confusion around guidance, and miscommunication may have led to blanket DNACPR decisions being made, or DNACPR decisions that were inappropriate – that is concerns they were being applied to groups of people or made for an invalid reason such as being frail. This led the British Medical Association, Care Provider Alliance, Royal College of General Practitioners, CQC and NHS England to jointly remind all providers and CCGs 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 joint statement.
Health and social care professionals indicated that they had not seen any guidance issued to suggest that DNACPR numbers needed to increase or that blanket DNACPR decisions should be put in place. At an organisational level, providers (including acute hospitals, mental healthcare trusts, community services, primary medical services, and adult social care providers) largely told us that they were unaware of the blanket and/or inappropriate use of DNACPR decisions.
However, as part of the review, the CQC heard evidence from a variety of people that there had been blanket DNACPR decisions in place.
Equality, the Mental Capacity Act and best interest decisions
Everyone should be involved in decisions about their care, with due regard for their equality characteristics. This is essential to making sure that they are treated equally and feel valued, that they, their family, carer or advocate do not feel coerced into making a major decision, and that their human rights are upheld.
There should be no discrimination in decision making. For example, a disabled person who is not terminally ill should not be treated as being at the end of their life. Someone with a learning disability and other health conditions should not be assumed to have a poor quality of life. In addition, under the Equality Act 2010, providers are legally required to make reasonable adjustments for disabled people. This includes removing any information and communication barriers, so that people can take part in these important conversations.
Lack of monitoring of DNACPR decisions
This meant that there was not enough evidence available to assure the CQC that people were always being properly involved in conversations about their care or DNACPR decisions. In addition, the results of the public survey raised specific concerns that people from particular equality groups were not fully involved in their care.
A number of recommendations have been made which will help to ensure that the DNACPR decisions are recognised as part of wider conversations about advance care planning and end of life care, and these decisions need to be made in a safe way that protects people’s human rights. Health and care providers need to ensure that these recommendations are followed now and continue. The pandemic only served to highlight concerns about the decision making process.
A new Ministerial Oversight Group must be set up to look in depth at the issues raised in the report. The group, which should include partners in health, social care, local government and voluntary and community services, should be responsible for overseeing the delivery and required changes of the recommendations of this report.
- People must always be at the centre of their care, including advance care planning and DNACPR decisions.
To do this, providers must ensure that people and/or their representatives are included in compassionate, caring conversations about DNACPR decisions as part of advance planning conversations. This includes making reasonable adjustments for disabled people to remove any information or communication barriers. Providers must also ensure that clinicians, professionals and workers have the necessary time to engage with people well.
- Everyone needs to have access to equal and non-discriminatory personalised support around DNACPR decisions, that supports their human rights.
To do this, health and social care systems must consider diversity, inequality and mental capacity factors when planning care for the local population, in partnership with local communities, including voluntary and community services.
- Clinicians, professionals and workers must have the knowledge, skills and confidence to speak with people about, and support them in making DNACPR decisions. To do this, there needs to be clear and consistent training, standards, guidance and tools for the current and future workforce. This needs to be in line with a national, unified approach to DNACPR decision making. Providers also need to ensure that there is training and development available for all health and care professionals.
- People, their families and representatives need to be supported, as partners in personalised care, to understand what good practice looks like for DNACPR decisions.
- People, their families and/or representatives, clinicians, professionals and workers need to be supported so that they all share the same understanding and expectations for DNACPR decisions.
- People need to have more positive and seamless experiences of care, including DNACPR decisions, when moving around the health and care system.
- There must be comprehensive records of conversations with, and decisions agreed with, people, their families and representatives that support them to move around the system well.
- Integrated care systems need to be able to monitor and assure themselves of the quality and safety of DNACPR decisions.
- Health and social care providers must ensure that all workers understand how to speak up, feel confident to speak up and are supported and listened to when they speak up.
- CQC must continue to seek assurance that people are at the centre of personalised, high-quality and safe experiences of DNACPR decisions, in a way that protects their human rights.
We will keep this important and sensitive matter under review and update on any further developments.