NHS England and Improvement has announced it will publish new national guidance on DNAR (Do Not Attempt Resuscitation) orders, after Kate Masters and Compassion in Dying raised concerns over poor and unlawful practice during the coronavirus pandemic with the Secretary of State for Health and Social Care. New guidance for patients and families on DNAR decisions is now due to be published for the first time, alongside updated information for NHS staff.

Campaigner Kate Masters, supported by law firm Leigh Day and charity Compassion in Dying, threatened legal action against Matt Hancock, the Secretary of State for Health and Social Care, in May this year over the lack of clear, accessible national guidance on DNAR orders (also known as DNACPR [Do Not Attempt Cardiopulmonary Resuscitation] or DNR [Do Not Resuscitate] forms). Kate Masters’ challenge came in the wake of media reports of poor and unlawful practice, including DNARs being communicated to patients insensitively or unclearly, and blanket decisions not to resuscitate being issued by some health and care providers.

Compassion in Dying, a national charity that supports people to prepare for the end of life, wrote to the Health Secretary in May with its concerns, having received hundreds of calls relating to CPR and DNAR. Between 2017 and 2019, approximately 7% of all queries to its free, nurse-led information line related to these decisions. Concerns ranged from patients who want to refuse CPR feeling ignored and abandoned by healthcare professionals, to people distressed when DNAR decisions were not properly discussed with them or their loved ones, to health and care professionals confused by the lack of clarity around DNAR.

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 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.

“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 DNAR 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 DNAR 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.”

Merry Varney, from the human rights team at Leigh Day representing Ms Masters, said:

“It is fundamentally important that at such a crucial stage in the care of vulnerable family members, 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 that all patients only have DNR decisions made following a lawful process and that no others have to endure what our client and others have had to.”

***ENDS***

For more information or interview requests with Compassion in Dying, please contact Ellie Ball, Media & Campaigns Manager at Compassion in Dying, at ellie.ball@compassionindying.org.uk or 07725 433 025.

For interview requests with Leigh Day, please contact Maxine Wolstenholme, Media Relations Manager, at MWolstenholme@leighday.co.uk or 07775 713725.

Compassion in Dying’s letter to the Secretary of State for Health and Social Care can be read in full here: https://compassionindying.org.uk/wp-content/uploads/2020/05/Letter-to-SSHSC.pdf

Notes to Editor:

Kate Masters’ legal challenge

Ms Masters’ late father David Tracey brought a successful judicial review in 2014, which established that a DNACPR notice issued to his late wife Janet Tracey without her or her family’s knowledge was a violation of her human rights. As a result of the case, DNACPR decisions must, by law, be discussed with and explained to the patient or their family, other than in very limited circumstances.

Ms Masters this year brought a fresh legal challenge, supported by Leigh Day and Compassion in Dying, against the government for failing to use its emergency powers to ensure patients and their families understand how decisions are made about DNACPR orders in light of the current coronavirus pandemic. As a result, NHS England and Improvement has announced it will publish new, national guidance on DNAR for patients and for NHS staff.

Compassion in Dying

Compassion in Dying is a national charity that supports people to prepare for the end of life, including how to talk about it, plan for it and record their wishes – a process referred to as advance care planning. It has supported over 56,000 people to plan ahead and is the UK’s leading provider of living wills (also known as Advance Decisions or Advance Directives).