Learning Disability Today
Supporting professionals working in learning disability and autism services

Do not resuscitate orders and learning disability: where are we now?

In the UK currently, there are over 4,000 Covid-19 patients in mechanical ventilation beds, the highest number seen so far in this pandemic.

As choices of available care become more limited, there is a risk that resources will not meet all patients’ clinical needs. This could lead, in a worst-case scenario, to doctors having to face challenging decisions on prioritisation of intensive care unit (ICU) places and mechanical ventilation.

A key question that emerged from the first wave of the pandemic was whether hospitals should consider a person’s ‘do not resuscitate’ (DNR) status to make decisions about ventilator allocation. This was because some existing and proposed guidelines for triage during a public health emergency put DNR status in the list of criteria for excluding patients from getting ventilators or other life-saving health care.

Another question was whether blanket DNRs should be given to groups of people in which resuscitation was considered futile or harmful such as patients who score poorly on frailty assessments.

What is a ‘do not resuscitate’ (DNR) order?

A ‘do not resuscitate’ (DNR) order, also known as a DNAR or DNACPR order in England and Wales, is a document issued and signed by a doctor, which tells a medical team not to attempt cardiopulmonary resuscitation (CPR).

CPR is an emergency treatment used to restart a person’s heart should the person suffer cardiac arrest or die suddenly. It can include chest compressions, intubation where a tube is inserted down the throat into the lungs to deliver oxygen, or defibrillation.

According to the Resuscitation Council UK, the purpose of a DNR decision is to provide immediate guidance to healthcare professionals on the best action to take. It is not a legally binding document and if you have a DNR form you will still be given all other types of treatment.

Blanket DNRs during the pandemic

In December, the Care Quality Commission (CQC) published an interim report from its review into the application of DNR decisions during the Covid-19 pandemic and found that a combination of unprecedented pressure on care providers and other issues may have led to decisions concerning DNR orders being incorrectly conflated with other clinical assessments around critical care.

It concluded that it was unacceptable for decisions to be applied to groups of people of any description.

One of the issues highlighted was guidance from the National Institute for Health and Care Excellence (NICE) which recommended the use of the Clinical Frailty Scale as part of decision making for access to critical care. 

This was based on an already existing body of evidence that suggested that older frail individuals receiving mechanical ventilation had increased odds of hospital mortality.

Yet fears began to increase about what would happen if the blanket application of a frailty measure in these circumstances was used for people with learning disabilities who would score as frail according to the scale. Revised guidance was issued by NICE five days later to make it clear that this was not an appropriate use of the tool.

But these fears became reality when charities began reporting numerous cases were DNRs were communicated to patients with disabilities insensitively or unclearly, and blanket decisions not to resuscitate were issued by some health and care providers.

Who makes the decision on a patient’s DNR status?

Guidance from the Resuscitation Council stresses the need for doctors to have clear and honest discussions with patients about CPR and the likelihood of its success.

For some patients such as those dying from an advanced and irreversible condition, CPR will subject them to a vigorous physical intervention that deprives them and those important to them of a dignified death. For some people this may prolong the process of dying and, in doing so, prolong or increase suffering.  

Resuscitation and ceiling of care decisions can be highly emotive and personal, resulting in complex discussions, and evidence shows that clinicians are often poor at communicating with patients about DNRs. Many doctors agree that there is never a ‘nice time’ for these discussions, but it is often necessary to, when a patient’s circumstances change, or there is the potential for clinical deterioration, such as is the case in the current Covid-19 pandemic.

Lessons from the first wave of the pandemic

The CQC will carry out a full review into the use of DNRs as part of advance care planning during the pandemic and is expected to report its finding next month. The aim is to inform national learning and improvement, and support good practice development after some stakeholders told the regulator that poor practice around DNRs was “a longstanding problem that the pandemic has exposed and exacerbated.”

Concerns ranged from patients who want to refuse CPR feeling ignored and abandoned by healthcare professionals, to people distressed when DNR decisions were not properly discussed with them or their loved ones, to health and care professionals confused by the lack of clarity around DNR orders.

Usha Grieve, Director of Partnerships and Information 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 – from DNRs being issued in a blanket way, to decisions not being properly communicated or explained to patients or families, to people who want to protect themselves from potentially harmful or futile CPR feeling ignored.”

Mencap said that long before Covid-19, people with a learning disability faced serious health inequalities. Now CQC’s review of inappropriate DNRs placed on people is further evidence of the discrimination they’ve faced during the pandemic.  

Dan Scorer, Head of Policy at Mencap, said: “We welcome the review which has found evidence of all the concerns that people with a learning disability, their families and care providers raised. And now we’re looking forward to working with the CQC as the work moves into its next phase – making sure that key recommendations are made to Government around addressing poor practice.”

Learning Disabilities Mortality Review report

Overuse of DNRs for people with a learning disability was also highlighted in the 2019 English Learning Disabilities Mortality Review (LeDeR) report, which examines how people who have a learning disability have died in the last year.

Of 1,875 deaths of adults reviewed in 2019 for whom data was available about DNR decisions, 72% had such a decision. Reviewers felt that of these only 78% were appropriate, correctly completed and followed.

Of the reviews of deaths completed in 2019, 13 reviews noted that ‘learning disabilities’ had been included as a reason for not resuscitating the person, but the report did note that 11 of the 13 people had died before May 20 2019 when Professor Stephen Powis, National Medical Director, sent a letter to senior clinicians reminding them that the terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for issuing a DNR decision.

Updated ethical guidance for doctors

The British Medical Association recently updated its ethical guidance for doctors. It said that during the peaks of the pandemic, doctors may be required to assess a person’s eligibility for treatment based on a ‘capacity to benefit quickly’ basis. As such, some of the most unwell patients may be denied access to treatment such as intensive care or artificial ventilation.

It acknowledges that this inevitably will have a disproportionate impact on both the elderly and those with long-term health conditions relevant to their ability to benefit quickly.

The guidance added: “It is essential that these decisions are based upon clinical factors related to outcome, and not, for example, on the basis of discriminatory judgments about the value or worth of individual lives.

“Similarly, health conditions or impairments unrelated to capacity to benefit clinically must not be used to guide decision-making. The presence, for example, of a learning disability would almost certainly not be a clinically relevant factor.”

Role of learning disability nurses

The impact of poor care coordination on premature deaths of people with learning disabilities has repeatedly been highlighted.

This is why Mencap has been campaigning for dedicated learning disability nurses in hospital trusts. According to the latest figures from NHS digital, there has been a 40% drop in the number of registered learning disability nurses in NHS posts from 5,368 in 2010 to 3,223 in 2020.

The LeDeR report also recommended that a named healthcare coordinator be allocated to people with complex or multiple health needs, or two or more long-term conditions, to enhance person centred care and support planning. 

It also recommended developing, piloting and introducing specialist physicians for people with learning disabilities to work across the population of people with learning disabilities, in a similar way that paediatricians and geriatricians do with the youngest and oldest age groups.

Plans need to be put in place urgently to avoid more unnecessary deaths of people with learning disabilities as the latest Public Health England report has estimated that 6.3 times more deaths occurred among people with learning disabilities than the general population between 21 March and 5 June 2020.

The disabled community has the same rights as anyone else to be fully involved in decisions about their own lives and DNR decisions should be taken on a case-by-case basis to avoid any potentially discriminatory practice.

As a statement released by Disability Rights UK in April last year, supported by disabled people’s organisations and allies, said: “Our individual chance of benefiting from treatment should we have Covid19 must not be influenced by how our lives are valued by society.”


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