"No decision about me without me": why families must be involved in 'do not resuscitate' orders

Yesterday’s Daily Telegraph reported that, according to NHS nurses, too many patients are being subjected to Do Not Attempt Resuscitation (DNAR) orders without families being told. Our Human Rights Lead Jacqui Graves provides the important clinical context behind the headlines.

Dee View Court Nurses discuss a patient

The article states that the Royal College of Nursing have heard repeated warnings that “failures to communicate” meant families were left shocked to discover that DNAR decisions had been taken about their loved ones.

The families are right to be shocked – not at the decision itself but certainly at being left out of the decision-making process. That said, it is not for the patient or the family to make such a decision.

How should DNAR decisions be made?

Whether or not to resuscitate a person is a medical decision based on likely clinical effectiveness. In other words, if we do or do not resuscitate someone, what are the likely clinical outcomes and consequences to someone’s life – the pros and cons of either action? 

How doctors and their teams make that decision should respect Article 8 of the UK Human Rights Act (1998) – the right to private and family life, home and correspondence – and involve the patient and family or, at the very least, inform them of that decision and its rationale.  

DNAR orders in the context of human rights

R Tracey vs Cambridge University Hospitals NHS Trust was a landmark legal case that, in 2014, set a precedent for how these decisions should be made, and all current resuscitation and General Medical Council guidance is based on this Supreme Court ruling.

The ruling reflected that, when doctors make a DNAR decision, it should respect Article 8, which reflects the ideal of “no decision about me without me”.

The Supreme Court made it clear that doctors must consider a patient’s rights before making a DNAR order and, wherever possible, involve them and their family in the decision-making process or, at the very least, inform them of the decision.

When would the family not be involved?

The only reason not to do so was if it would cause them to suffer serious physical or psychological harm – essentially a breach of Article 3, the right to be free from torture, inhuman and degrading treatment. 

Doctors cannot be forced to deliver or continue care which they believe to be clinically ineffective. If the patient and/or family cannot be involved in the decision-making process then it is important to involve the whole clinical team in that decision and document this in the patient’s records.

Learn more about human rights and end of life care

Sue Ryder is working in collaboration with the British Institute of Human Rights to support health and care workers in developing greater understanding of how human rights provide a practical route for ensuring and promoting compassion and dignity in end of life care.

If you work in end of life care and want to learn more about balanced and ethical decision-making or wish to upskill your team in doing so, sign up for one of our free workshops.

Author

Human Rights Lead Jacqui Graves

Human Rights Lead

Jacqui Graves

Jacqui is a Registered General Nurse with 33 years' experience. At Sue Ryder, she leads on our 'What Matters to Me: a human rights approach to end of life care' training programme.