Do not resuscitate orders cannot apply 'just because' someone has a learning disability or autism, GPs told

GPs have been told that ‘learning disabilities are not fatal conditions’ in a letter sent by NHS England, reminding them that do not attempt cardiopulmonary resuscitation (DNACPR) notices should not appear on a person’s record 'just because' they have a learning disability or autism.

In a letter sent to GPs and Clinical Commissioning Groups, NHS England stated that in relation of DNACPR notices (also known as DNARs): ‘Blanket policies are inappropriate whether due to medical condition, disability, or age.

’Learning disabilities are not fatal conditions’

‘This is particularly important in regard to DNACPR orders, which should only ever be made on an individual basis and in consultation with the individual or their family. The NHS is clear that people should not have a DNACPR on their record just because they have a learning disability, autism or both.

‘This is unacceptable. The terms “learning disability” and “Down’s syndrome” should never be a reason for issuing a DNACPR order or be used to describe the underlying, or only, cause of death. Learning disabilities are not fatal conditions’.

A learning disability is defined as having a reduced ability to understand new or complex information, learn new skills and live independently.

A Care Quality Commission (CQC) interim report (published last November) into the use of DNR notices during the pandemic, stated: ‘The individual feedback we received showed experiences of people and their families who were unaware that they had a DNACPR order, often not finding out until the person was quite unwell. Sometimes this decision had been made by a medical professional without the involvement of the person or family.

'Sometimes the family were told that the person had agreed to the DNACPR, but there were questions raised about whether this was informed consent due to reasons such as deafness or not speaking English.’

The CQC issued a joint statement with the Care Provider Alliance and the Royal College of General Practitioners in April 2020 which criticised the actions of some GPs who determined people who receive care in community settings do not need resuscitation if they catch Covid.

It stated: ‘It is unacceptable for advance care plans, with or without DNAR form completion to be applied to groups of people of any description. These decisions must continue to be made on an individual basis according to need.’

NHS England said the CQC statement ‘provides an excellent basis for the approach required, not just in general practice but throughout the health and care system’.

NHS England has ‘strongly’ recommended clinicians refer to guidance published on NICE’s website for the management of patients with suspected and confirmed COVID-19 who have a learning disability or are autistic.

GPs ‘ringing around asking the vulnerable’ if they wanted DNR

Disability rights campaigner Baroness Jane Campbell has voiced concerns about the use of DNR notices during the pandemic.

Speaking at a virtual event last year about government policy responses to COVID-19, the cross-bench peer denounced the practice of GPs “ringing around asking the vulnerable if they wanted to consider a DNR on their notes”.

According to a poll of disabled people and their carers published in May 2020, some said they had been asked to sign Do Not Resuscitate (DNR) notices and others said they were told they would not be ventilated if they contracted COVID-19.

In April 2020, during the first peak of the UK's coronavirus outbreak, Baroness Campbell signed a letter with hundreds of disability charities urging NHS doctors and nurses not to trample on the rights of disabled people by denying them life-saving coronavirus treatment.

Baroness Campbell said: “It began to feel like there was only a very short walk from being one of the ‘vulnerables’ to the chilling club of the ‘expendables’.

To find out more about DNAR notices, click here