Protect, respect, connect. It’s time to talk about end of life care planning

In her latest blog, Dr Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care, talks about CQC’s new report ‘Protect, respect, connect. You can read the full report here.

Dr Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care
Dr Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care

We know that good care puts people at the centre and makes space for them to have meaningful conversations. Conversations where people can make informed decisions about their current and future care, and about what matters most to them.

When done at the right time, in a personalised, caring and compassionate way, conversations about end of life planning can be an important, empowering and integral part of good quality care. They are vital conversations that should be encouraged at an appropriate time for the individual. ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR) decisions are a part of these discussions and they can support people to make their wishes clearly known ahead of time.

At the beginning of the pandemic, we heard concerns that these decisions were being made without involving people or their families. We also heard concerns on these orders being applied to groups of people, rather than considering each person’s individual circumstances. We said explicitly that this was unacceptable, and wrote to adult social care providers and GP practices with a statement prepared with the British Medical Association, Care Provider Alliance and Royal College of General Practitioners. We set out our shared position on the importance of advance care planning being based on the needs of the individual and reminded providers of their responsibility to assure themselves that any DNACPR decisions have been made in line with legal requirements. We welcomed the ask by Department of Health and Social Care to conduct a special review into these concerns.

This is an important and sensitive issue. Throughout the pandemic we’ve seen many providers respond to significant challenges swiftly, working together to make sure people are getting safe, effective, high quality care. During our review of DNACPR decisions during the COVID-19 pandemic we heard about care providers speaking up about inappropriate decisions on behalf of people in their care. We saw increased collaboration between providers, and systems adapting to ensure that people and their families or carers were at the heart of all conversations.

However, as we set out to establish a fuller picture of how DNACPR decisions were being made throughout the pandemic, we found that a combination of unprecedented pressure on care providers and other issues may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around treatment and care. We saw a worrying picture of poor involvement, poor record keeping, and a lack of oversight and scrutiny of the decisions being made.

Our findings tell us that there needs to be a focus on information, training and support for staff and people who use services. In our report we talk about the need for improved oversight so the system can assure itself that sound clinical decisions are being made. Alongside this, we call for a consistent national approach to advance care planning and DNACPR decisions. As our findings show, these are long standing concerns — exacerbated by the pandemic.

However, as we’ve seen before when shining a light on inequalities, poor outcomes for people and challenges in our health and care system, the crisis has also highlighted areas for learning. This is an opportunity to make sure we all have improved conversations about end of life care, and for all providers and local systems to prioritise these conversations. We must ensure that any discussions about DNACPR are person-centred, that staff feel confident to hold them, and can speak up if they have concerns.

Our report is just the beginning. It shares recommendations to ensure there’s continued, focused improvement and we’ve recommended a ministerial oversight group is set up to take forward our recommendations. They include changes needed in culture, training and support for people working in services to ensure people are always at the centre of their care. I encourage you all to read our recommendations in full — we all have a part to play.

We need to capitalise on this momentum to ensure conversations about advance care planning and DNACPR decisions are high on everyone’s agenda, and that people are given better information about these decisions at the time the conversations take place. We’re using #talkendoflifecare across social media — use this # and join the voice of providers, families and partners keeping this topic in the spotlight.

Lastly, everyone should think and talk about how they would want to be supported and what matters most to them, if they became seriously ill or approached the end of their life. It involves talking and exploring options about the type of support and care people would like to receive. Many of the organisations listed in our report offer both practical information and emotional support to help you start a conversation.

If you have questions or concerns about the use of DNACPR or wider care for yourself or someone close to you, please discuss these with the health and care professionals involved. If you’re unhappy about the matter not being resolved, then you should let us know. If you have experienced or seen poor care, you have the right to complain to the organisation that provided or paid for the care. Our guide explains how to do this. You can also tell us about the care that you have seen or experienced, and though we are unable to take forward complaints on your behalf, we use what people tell us to understand the quality of care.