Protect, Respect, Connect: Decisions about Living and Dying Well During Covid-19

In October 2020, the Department of Health and Social Care (DHSC) asked the Care Quality Commission (CQC) to review how Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions were used during the Covid-19 pandemic.

In December 2020, the CQC published an interim report based on intelligence received from people sharing their experience, stakeholder groups, and reviewing existing guidance.

The final report was published in March 2021, and in this article we’ll look at ‘Protect, Respect, Connect: Decisions about living and dying well during Covid-19’ to examine its findings and recommendations.

Jim’s Story

The CQC is the independent regulator of health and adult social care in England. Their core mission is to make sure health and social care services provide people with safe, effective, compassionate, and high-quality care.[1]

When tasked with reviewing DNACPR decisions, they looked at individual stories, as well as taking into account broader datasets and statistics to inform their report.

Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care at the CQC highlighted the story of Jim to explain why taking into account real-life stories was vital to providing truly compassionate care.

Jim was taken to hospital at the beginning of the pandemic with a chest infection. He still worked despite being in his 80’s and was normally fit, well, and active. He went out most weeks in his car to visit friends and enjoyed going to the cinema.

12 hours after being admitted to the hospital, he called his daughter Melanie to inform her a doctor had put an order in place that they wouldn’t restart his heart if it stopped, and he had agreed to it.

Upset and confused, Jim told Melanie he had agreed to the order but didn’t want to die, and he didn’t want to have signed his life away.

Melanie spoke with the CQC about how she tried to speak with the medical and nursing staff about what led to the decision to issue the DNACPR being made.

She felt the conversations were all one way, and that no consideration of her dad’s quality of life in regular times was taken into account.

Because Jim was capable of making decisions about his care, he had made the decision on his own without having to consult others.

Melanie was concerned that Jim was in a vulnerable state because he was alone, ill with an infection, and ultimately confused at the situation he was in. She felt he would have just agreed with whatever he was told.

Jim later died in hospital, and in the midst of the pandemic and the way in which the DNACPR was enacted, his death was even more painful for Melanie and her family. [1]

Recurrent Themes

Jim’s story was not unique during the course of the pandemic, with increased pressure on NHS staff and a lack of resources meaning decisions were made in haste.[1]

There were many good cases that the CQC found as well, with best-practice demonstrated and elderly patients recovering to full health, or being content with the decisions that were made regarding their care.

However, the overwhelming response was that the compassionate considerations when providing care had been overtaken by pragmatism, with blanket DNACPR orders being issued, in many cases without a proper consultation process.[1]

The broad themes can roughly be divided into three core areas.

Information, training and support

The public found the whole conversation around DNACPR’s confusing. The terminology was said to be too difficult to follow regarding advanced care plans and exactly what procedures were in place.

Whilst there’s a good understanding of what CPR is, knowledge surrounding people’s rights when it comes to DNACPR orders is lacking and clouded by misconceptions.

Discharged patients felt unsure of how to raise concerns and which avenues were available to them to get more information and advice about DNACPRs.

The training and support were found to be quite inconsistent for those working across social care services, with some not being aware they were able to issue DNACPR’s and did not feel supported in making that decision.

2. Inconsistent national approach

Another theme throughout the research was that there was no coordinated, consistent national approach or process.

This even trickled down to local areas, with different providers in the same areas taking different approaches, further confusing patients who require multiple care services.

Not only may patients use services across localities, but some service staff will operate in multiple areas and were having to follow different processes and fill out different forms depending on where they were.

3. Lack of oversight and assurance

When asking regional system leaders if all the DNACPRs in their area were appropriate, and how they would go about finding that out, it became clear there wasn’t really a simple answer.

There proved to be too little data to be able to draw from to get reliable answers. It has proven difficult to quantify the scale of the problem of DNACPR’s being in place inappropriately, as the data is not collected or collated in one place.

Other commonalities were that people simply didn’t know that a DNACPR was in place while they were in care, and their families were left shocked and distressed upon learning it was.

There were also a multitude of cases of people being called to ask if they were taken ill whether they would like a DNACPR to be in place, and being given inadequate time to make a decision.

Recommendations

Following the research and findings of the report, the CQC offered their recommendations on how best to rectify the difficult challenges posed by the DNACPR decision making process.

Firstly, DNACPR decisions need to be recognised as part of wider conversations about advance care planning and end of life care.

The decisions need to be made in a safe way that protects people’s human rights, and this needs to be the responsibility of the DHSC.[1]

The CQC is to continue to seek assurance that people are the centre of personalised, high-quality and safe experiences of DNACPR decisions. The priority is that people must always be at the centre of their care.

Everyone needs to have access to equal and non-discriminatory, personalised support. This is to be provided by clinicians, professionals, and workers who have had adequate training so they are equipped with the knowledge, skills, and confidence to speak with people and their families.[1]

People need to have more positive and seamless experiences of care, and there must be comprehensive records of conversations and agreed decisions.

Both professionals and patients alike need support so they share the same understanding and expectations for DNACPR decisions, allowing all to see what good practice looks like.

Health and social care providers must also ensure workers understand how to speak up and challenge decisions, asking for support if they feel they need it.

The recommendations from the report emphasise the need for better training and support to be offered to staff, better systems need to be implemented to monitor the quality of decisions being made, and people must feel confident and comfortable with the DNACPR process and their part in it.

[1] Benneyworth, Rosie. 2021. Chief Inspector, Primary Medical Services and Integrated Care. Care Quality Commission. Protect, Respect, Connect: Decisions about Living and Dying Well During Covid-19.