3 December 2020

Today the Care Quality Commission (CQC) has published the interim report from its review into Do Not Attempt Resuscitation decisions* during the COVID-19 pandemic.  Exactly 8 months ago I wrote “Whose life counts?” In it I flagged a particular issue that had started to hit the headlines: people with learning disabilities, older people, Autistic people and disabled people, having DNAR orders applied to them, with little to no consultation. In some cases, this was a blanket approach, with care home managers and advocacy groups alike alarmed by letters from medics stating that DNAR decisions had been made for all people falling within these categories in homes. The CQC interim report documents these issues as part of its current review. Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care states “It is unacceptable for clinical decisions – decisions which could dictate whether someone’s loved one gets the right care when they need it most – to be applied in a blanket approach to any group of people.” More than this, a blanket approach is almost certainly never lawful in human rights terms.

DNARs and human rights

DNARs can be a key part of respecting people’s human rights, if done appropriately. As part of advance care planning, people can make decisions about what care and treatment they do and do not want should they become very unwell. This is about exercising our autonomy, setting out our wishes and feelings in advance; that’s a huge part of our right to respect for private life (Article 8, Human Rights Act). In our experience at BIHR, this kind of planning is more the exception than the norm. That leaves DNAR decisions being made much later on; but even then, there is often confusion about how these decisions should happen. They are medical decisions; and often a DNAR order will be medically justifiable. For example, attempting resuscitation may itself cause inhuman and degrading suffering (a breach of Article 3 rights), with very little chance of success. This is not the issue.

The issue is about discriminatory and disproportionate uses of DNAR orders, with little to no involvement of people and those who care about them. Many human rights are at play here, particularly the right to life (Article 2, Human Rights Act), the right to respect for private life, including choice and involvement (Article 8, HRA) and, importantly, the right to non-discrimination (Article 14, HRA). Medical decisions must still be lawful decisions. Importantly, this also means complying with the Human Rights Act; the legal duty to respect and protect the rights it contains apply to all public authorities, including the NHS, and the decisions made in those bodies every day. Decisions about care and treatment. Decisions about DNARs.

 

The CQC's interim report

Today’s CQC’s report flags early findings are that, at the beginning of the pandemic, a combination of unprecedented pressure on care providers and other issues may have led to decisions concerning DNAR being incorrectly conflated with other clinical assessments around critical care. The report suggests there is no evidence that blanket approaches to DNAR decisions are being used currently, but rather that people who use services and groups that represent them have said they or their loved ones received DNAR decisions which were not based on their wishes and needs, and without their knowledge and consent.

 

What are people’s experiences?

BIHR’s own research this summer, cited in the CQC’s report, highlighted that DNARs are a key issue; with almost 1 in 10 people having experienced such decisions or pressure to accept orders. The findings from advocacy groups and staff in health and care were just as worrying:

    

At BIHR we’re not convinced that discriminatory and disproportionate DNAR decisions are no longer happening. Yesterday, with our partners Learning Disability England and Turning Point, we hosted an online workshop with over 60 people who have experienced DNAR decisions, both this year and beyond. We are analysing the results now to produce a human rights analysis which we will make publicly available, and which we will feed into the CQC Review. Some initial findings tell us this is going to be a worrying report:

            Have health and care staff discussed your right to life with you?

 

During Coronavirus have you been given information about your right to life?

 

 

Have you been involved in making the DNAR decisions impacting on you (directly or as a family member, friend or carer)?

Do you think discrimination has been an issue in the DNAR decisions you’ve experienced?

The reasons people identified included: Being older and having a learning disability; Physical disability; Older person; Being non-verbal; Dementia

The session ended with people sharing their experiences, heart-breaking and anger-inducing real-life experiences of DNAR decisions. Experiences which Covid-19 has thrown a spotlight on, but ones which are not unique to this pandemic. Poor decision-making, where processes are not followed, where people are not involved, where some lives are seen to matter more than others, was happening long before Covid-19. We asked people to share their feelings through words, this is what DNAR decisions made people feel:

   

We must do better

SCARED. ANGRY. DISCRIMINATION. We must change what happens now, and after the pandemic. No person should be have their access to care and treatment denied for discriminatory or disproportionate reasons, not just because our moral compasses should say so, but because that is at the heart of our human rights law. The global community started setting these laws down because “All human beings are born free and equal in dignity and rights” and that “everyone is entitled to all the rights and freedoms…without distinction of any kind”. So says the start of the Universal Declaration of Human Rights, the grandmother that our Human Rights Act is drawn from. Today is the international day for disabled people; we must do better.

SURVEY: Although our research workshop has closed, we still have a survey for people who've experienced DNAR decisions to share their thoughts with us. This is currently open until the 14 December. We will use this information, together with our workshop findings to produce a human rights report.

STAFF WORKSHOP: If you're a staff member working in health, care, social work, etc. you can join our research workshop on 11 Jan 2020. More information hereCOMMUNITIES OF PRACTICE: Finally, to keep in touch with BIHR and have access to our lunch and learns and other resources and support, please join our communities of practice. More information here. 

*  Please note, we recognise the terms used are do not attempt cardiopulmonary resuscitation (DNACPR), and that this is often shortened to are do not attempt resuscitation (DNAR) and do not attempt resuscitation (DNR),