The Department of Health and Social Care (DHSC) had initially dismissed the claims from lawyers acting for Kate Masters, whose family won a landmark Court of Appeal ruling in 2014, giving patients and their families a legal right to be consulted over the decision to attempt resuscitation if a patient’s heart stops.
Hours before a deadline for lawyers to prepare the case for court, the department said it would publish more information.
This will include advice for the public to make clear that patients and family should be involved in conversations before a “do not attempt resuscitation” (DNAR) notice is put in place and crucially how to request a review.
Health secretary Matt Hancock is to issue guidance on controversial “do not resuscitate” orders for doctors after growing concern over use of blanket notices in care homes during the coronavirus crisis.
Multiple examples of unlawful or inappropriate orders being applied to patients during the coronavirus outbreak sparked fears of widespread systemic breaches of patients’ human rights.
But now, following the threat of a judicial review, ministers have agreed to make the rules clearer for doctors and patients. Legally, the orders must be made on a case-by-case basis and patients should be included in the discussion.
The department will also issue guidance via the NHS to staff in each hospital trust about the process they should follow including how to escalate concerns where there is no agreement.
In earlier letters seen by The Independent, lawyers at the DHSC had argued for weeks that incidents were a matter for local health bodies to resolve and that “the secretary of state does not accept that there is a lack of clarity: the position on the use of DNARs is entirely clear”.
Ms Masters and her legal team from Leigh Day solicitors collected examples of unlawful or badly handled DNARs from patients and families across the country. In many cases families were not told, even where the patient was unable to make the decision for themselves. In other cases, patients described brief calls on the phone that left them confused, upset and scared.
A “do not resuscitate” notice is a clinical decision by a doctor not to attempt resuscitation if they believe it will be unsuccessful. A doctor does not need the patient’s consent but after the Court of Appeal ruling in 2014 they are required to consult the patient or their family. Not doing so is a breach of human rights.
Ms Masters told The Independent she believed making clear information available to patients would empower them to take action where the law isn’t followed. She said: “This is something I have wanted for years. I raised this with the department in 2017. They have always come back to saying it’s a local issue.
“I am concerned they are going to kick it into the long grass. If that happens, I will consider taking it further. When patients and their families face the important conversations about end of life treatment and care, the one thing they absolutely need is clear information readily available so that they can engage in the discussion and ensure that their human rights are upheld.”
Leigh Day partner Merry Varney said: “This marks a fundamental step in improving protection of human rights for potentially thousands of people.
“Since the start of the pandemic, we have been inundated with requests for help from confused and distressed patients and families about ‘do not resuscitate’ decisions. Many appear to have had their right to respect for private life infringed, just as Kate’s mother had, with evidence of DNRs being implemented without consultation, without families being told, and without any clear explanation of the process for making these decisions.”
The charity Compassion in Dying had also backed the case and said it would intervene if it went to court.
Davina Hehir, director of policy, said the decision by the DHSC was “a victory for common sense”.
“Kate Masters and Compassion in Dying’s calls for clear, national guidance on CPR and DNAR decisions have been heard, and we welcome the publication of accessible information for patients and families and for NHS staff as soon as possible.
“We urge NHS England and Improvement to ensure this new guidance is written with patients and families so that it is truly fit for purpose.”
The DHSC said it was wrong to suggest the secretary of state had “backed down” over the legal action.
A spokesperson for the DHSC said: “It is completely unacceptable for ‘do not attempt resuscitation’ orders to be applied in a blanket fashion to any group of people. Along with NHS England and the Care Quality Commission, we have taken action on a number of fronts to prevent this from happening.”