• Charity urges NHS England to publish promised national DNR guidance as matter of urgency
  • Charity demands action following reports on its information line and in new Queen’s Nursing Institute research of Do Not Resuscitate orders made in blanket way or without explanation to patients and families

Compassion in Dying today (Saturday 29 August 2020) joins calls for an inquiry into the use of Do Not Resuscitate (DNR) orders during the coronavirus pandemic and urges NHS England and Improvement to publish promised national guidance on DNRs as soon as possible. This comes following reports on the charity’s information line of poor and unlawful practice regarding DNR decisions during the pandemic and in recent years.

Since March 2020, the charity has heard several reports on its free, nurse-led information line of DNR orders (also known as Do Not Attempt Resuscitation [DNAR] or Do Not Attempt Cardiopulmonary Resuscitation [DNACPR]) being made for patients across a range of healthcare settings in a blanket fashion, which is unlawful, or with no communication or explanation to patients or their loved ones, despite this being a legal requirement.

Sonya Brown, 51, from Lanarkshire discovered her husband Alan had a DNR by chance, when she looked in a community nursing folder left on her sofa. Alan had been diagnosed with lung cancer in October 2019 and was admitted to hospital in late March 2020 with suspected COVID-19, though tests later came back negative. Alan was discharged home after several days. He died on the 11th of April 2020.

Sonya said, “Inside the folder I found a document which said Do Not Resuscitate. It was dated the day Alan went into the hospital. I was just overwhelmed when I saw it. At no point did someone explain that his disease was progressing and this was normal. We felt completely adrift. I felt such guilt about the DNR. If I had tried to lift it would he have lived? I now understand the rationale for one being in place, but what I don’t understand is why no one thought to phone me and talk to me about it, particularly when I couldn’t be with him in hospital because of lockdown.”

Compassion in Dying has also heard reports of Living Wills (also known as an Advance Decision to Refuse Treatment, a legally-binding document which allows people to refuse life-prolonging treatment in future) being unlawfully completed in a blanket way by care home staff, on behalf of residents who lack capacity to make the decisions within them. Compassion in Dying is submitting evidence on its concerns to the House of Lords Select Committee on ‘life beyond COVID’, chaired by Baroness Lane-Fox.

The charity’s findings chime with new research from the Queen’s Nursing Institute into care homes, which reveals that DNR decisions were made without explanation to the patient or their family, and that one in 10 care homes may have been told to apply blanket DNR orders to residents. Compassion in Dying now joins calls for an inquiry into the use of DNRs and no-hospital-admission policies during the pandemic.

Analysis of hundreds of calls to Compassion in Dying’s information line in 2017-2019 indicates that issues regarding decision-making and communication about DNRs are not new, but have been highlighted and exacerbated by the pandemic. Concerns range from patients who want to refuse CPR feeling ignored or abandoned, to people distressed when DNR decisions are not properly explained to them or their loved ones, to health and care professionals confused by the lack of clarity around DNR.

In July 2020, the Secretary of State for Health and Social Care, Matt Hancock, heeded calls from Compassion in Dying and campaigner Kate Masters for clear, national guidance on DNR in England after they threatened legal action. Compassion in Dying now urges NHS England and Improvement to publish clear, accessible guidance for NHS staff and for patients and families as a matter of urgency.

Davina Hehir, Director of Policy and Legal Strategy at Compassion in Dying, said:

“Coronavirus has highlighted and exacerbated ongoing problems with decision-making and communication around DNRs which have proliferated under a lack of clear, national guidance. This has had devastating effects on patients and families right across the spectrum.

“Patients who want to protect themselves from potentially harmful or futile CPR are being ignored, and family members feel misled or cast adrift when they discover a DNR decision has been made with no explanation at all. Both scenarios completely undermine person-centred care at the end of life. They risk jeopardising efforts to demystify CPR decisions and improve communication between doctors, patients and families about the end of life.

“NHS England and Improvement must now publish its promised guidance on DNR decisions as a matter of urgency, and an inquiry must be launched into the apparent directives not to provide life-prolonging treatment to entire groups of people, often with no explanation to patients or loved ones. A transformation of end-of-life care is much-needed and long overdue, and coronavirus can and should be seen as a catalyst to forge a more compassionate, patient-centred approach.”

ENDS

 

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

 

Notes to Editor

 

About Compassion in Dying

We can help you prepare for the end of life. How to talk about it, plan for it, and record your wishes.

We help people through our free information line, publications and resources, and through our work with diverse communities. We specialise in supporting people to make Advance Decisions (‘Living Wills’) and to talk about their goals and priorities when living with a life-changing illness. Our free MyDecisions website helps people to record their wishes for care in a legally binding way.