Government to publish guidance ensuring patients and families are involved in DNR decisions

By agency reporter
July 16, 2020

The Secretary of State for Health and Social Care, Matt Hancock, has said that he will publish two documents to ensure patients and families understand how Do Not Resuscitate (DNR) decisions are made in light of the current coronavirus pandemic.

One document will be for patients and their families setting out matters such as right to be involved in the decision and how to request a review, the other for all NHS staff, both to be published on the NHS website.
 
This follows potential legal action from Leigh Day client Kate Masters to ensure that patients’ Article 8 ECHR rights in relation to DNRs are protected.
 
Ms Masters had launched a legal action against the Government and signalled her intention to apply for permission for Judicial Review of the Secretary of State for Health and Social Care’s failure to issue clear national guidance or a directive to ensure that patients’ Article 8 rights in relation to DNRs are protected.
 
Following her father’s case in 2014, the law has been clear that Article 8 ECHR, the right to respect for your private life, requires that DNR decisions are taken in consultation with a patient or their family, that patients know in advance how decisions will be made and what to do in a disagreement.
 
Represented by Leigh Day Partner Merry Varney, Kate Masters had provided evidence that the Article 8 rights of patients are being systematically violated and expressed her gratitude to those who provided their stories in witness statements for her case. 
 
She argued the multiple examples of DNRs being made without consultation and concerns about blanket DNRs were a result of the Secretary of State for Health and Social Care (SSHSC) delegating resuscitation policies to a local level at a time of national healthcare emergency, and that patients and families were turning to her and to lawyers desperate for information, many believing consent was required for a DNR decision to be made.
 
Initially the SSHSC maintained this was a matter for local health bodies, before accepting after legal correspondence that clear guidance was needed.
 
However Masters' request for fuller information on the NHS website was denied, and for weeks the SSHSC maintained other generic statements were sufficient to inform people about DNRs and the decision making process required by law. 
 
Despite her pointing out misleading wording on the NHS website stating that “you can change your mind and your DNACPR status at any time”, the SSHSC did not agree to take action until Masters' case was being prepared for Court.

Kate Masters said: “I am really pleased that, following correspondence with my legal team, Matt Hancock has informed us that he will be issuing patient facing information on the NHS website.

“Previously, In response to many stories in the press, various regulatory and professional bodies including NHSE have issued letters aimed at clinicians to remind them that DNACPR decisions must be based on clinical need and individual circumstances.
 
“There has however to date been no such national initiative to ensure that patients have the information to hand to ensure that they can engage in these discussions.
 
“The pandemic has created a situation where people facing DNACPR decisions are often without their usual family network around them.  In the absence of the information needed they have turned to lawyers and journalists.
 
“This situation is unacceptable.  My dad fought for people to have the right to be involved in a DNACPR decision. It is hard for them to do this without knowing the process and their legal rights. It’s a fundamental omission. It is not the sole responsibility of clinicians to do this.  
 
“Matt Hancock has reassured me that what I have asked him to do is now in hand, and following his commitment to provide patient facing information on DNACPR decisions on the NHS website I have decided to not proceed with my legal action.  
 
“My lawyers have provided specific information that needs to be made available which is based on what people have told us they are confused about and what legal rights they need to know about.
 
“I trust he will take note of and include this information in the information he provides, and I do not rule out taking this further in the future If it is not addressed appropriately or in a timely manner.”
  
Leigh Day Partner Merry Varney said: “It is fundamentally important that at such a crucial stage in the care of vulnerable family members, that people know and understand how the DNR process works, and what authority the medical profession may have, outside of a patient’s and family’s wishes.
 
“This marks a fundamental step in improving protection of human rights for potentially thousands of people after Kate’s father, David Tracey’s landmark Court of Appeal case in 2014.
 
“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 publication of national patient facing guidance and  guidance directed at all NHS bodies for all NHS staff involved in DNR decisions has the potential to ensure all patients only have DNR decisions made following a lawful process and no others have to endure what our client and others have had to.“

Davina Hehir, Director of Policy and Legal Strategy at Compassion in Dying, said: “This is a victory for common sense. Kate Masters’ and Compassion in Dying’s calls for clear, national guidance on CPR and DNACPR decisions have been heard, and we welcome the publication of accessible information for patients and families and for NHS staff as soon as possible.
 
“Coronavirus has highlighted and exacerbated ongoing problems concerning accurate and accessible national guidance regarding CPR, the lack of which has contributed to a proliferation of poor and unlawful practice during the pandemic.
 
“We know that many patients who express a wish to protect themselves from potentially harmful or futile CPR are not supported to do so, and equal distress is caused when a DNACPR decision is not thoroughly and sensitively explained to a patient and their family. Both scenarios completely undermine person-centred care at the end of life, and risk jeopardising sensible efforts to demystify CPR decisions and improve communication between doctors, patients and families around end-of-life decisions.
 
“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. It must help patients and families understand what DNACPR means, how decisions are made and that they have a right to be involved in discussions about these decisions. It must also include clear guidance for healthcare professionals on proper protocol and how to have sensitive, honest conversations with patients and families, so that they can provide lawful and compassionate care. Having supported 56,000 people to plan ahead for the end of life, Compassion in Dying is ready to offer our wealth of expertise in this area."

* Leigh Day https://www.leighday.co.uk/

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