Our review has highlighted that while many of the concerns raised are not new, it is the pressures of the pandemic that has exposed them and demonstrated the lasting impact of these on people.
Since the start of the pandemic, there have been particular concerns that ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions were being applied to groups of people rather than taking into account each person’s individual circumstances. While we did not find there had been a national blanket approach to DNAPCR, there was undoubtably confusion at the outset of the pandemic and a sense that some providers felt under pressure to ensure DNACPR decisions were in place. This risks undermining public trust and confidence in the health and care system and demonstrates the need for better oversight of DNACPR decisions.
All the health and care professionals we spoke with recognised the importance of ensuring that conversations around advance care planning are carried out with kindness and compassion, in line with best practice and people’s human rights. But how well people were involved in conversations about their care and whether or not they wanted to receive cardiopulmonary resuscitation varied.
Some people experienced compassionate, person-centred care where they were fully involved in conversations, and their wishes were understood and their rights upheld. The impact on people when this did not happen was hugely distressing. In these cases, conversations took place at short notice and people did not fully understand what was happening or what a DNACPR was.
Having the time and information to talk about what care and support people want and need to have a dignified and peaceful death is essential. During the pandemic, clinicians, professionals and workers have faced additional challenges in having to hold conversations under pressure and often during emergency situations. A lack of training and support for staff, and how confident they were in holding these conversations, has impacted on the quality of people’s experiences.
Being faced with unexpected conversations around DNACPR decisions, and having them at a time of crisis was made worse for people and their families and/or carers due to a lack of available accessible information. To ensure people are able to be fully involved in these conversations, there needs to be a consistent approach in the language used and the way that advance care planning and DNACPR decisions are talked about. This needs to be supported by greater awareness of their rights under the Human Rights Act 1998 and the Equality Act 2010.
As the independent regulator of health and adult social care services, we are committed to reducing inequalities, eliminating discrimination, advancing equality, and protecting human rights. With an expectation for people to be at the centre of their care, we will continue to improve our monitoring and oversight of DNACPR decisions, including whether these are carried out in a safe way that protects people's human rights.
Recommendations
DNACPR decisions need to be 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.
To do this, a new Ministerial Oversight Group must be set up to look in depth at the issues raised in our 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.
- Lead responsible body: Department of Health and Social Care
Information, training and support
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.
- Lead responsible body: Providers
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.
- Lead responsible body: Integrated care systems
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.
- Lead responsible body: Health Education England, Skills for Care and providers
A consistent national approach to advance care planning
People, their families and representatives need to be supported, as partners in personalised care, to understand what good practice looks like for DNACPR decisions.
This should include what their rights are and how to challenge and navigate experiences well. In addition, there needs to be positive promotion of advance care planning and DNACPR decisions, as well as a more general focus on living and dying well. To do this, there needs to be more widely publicised and accessible information available via a national campaign and in partnership with the voluntary sector and advocacy services.
- Lead responsible body: Department of Health and Social Care and NHS England and NHS Improvement
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.
To do this, system partners across health and care need to work with voluntary sector organisations, advocacy services and people to establish and assure a national unified approach to policy, guidance and tools that supports a positive experience of DNACPR decisions for people.
- Lead responsible body: Department of Health and Social Care
People need to have more positive and seamless experiences of care, including DNACPR decisions, when moving around the health and care system.
This requires the system to ensure digital compatibility between providers, enabling them to share real-time updates and information between professionals, services and sectors.
- Lead responsible body: NHSX and integrated care systems
Improved oversight and assurance
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.
This requires providers to ensure standards of documentation and record keeping and sharing of information around the system.
- Lead responsible body: Providers
Integrated care systems need to be able to monitor and assure themselves of the quality and safety of DNACPR decisions.
To do this, there needs to be a consistent dataset and insight metrics across local areas.
- Lead responsible body: Integrated care systems
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.
To do this, providers must follow national guidance to foster positive learning cultures and ensure consistency and clarity of speaking up arrangements across the patient pathway.
- Lead responsible body: National Guardian’s Office
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.
To do this, we will ensure a continued focus on DNACPR decisions through our monitoring, assessment and inspection of all health and adult social care providers.
- Lead responsible body: CQC
