Covid Scotland: Questions over 'discriminatory' guidance

Although the guidance was later revised, academics submitting evidence as part of the Scottish Covid Inquiry said "it is not clear what impact it had" and "there is a lack of evidence on how clinical decisions regarding access to critical care were made".

They also raise concerns around "significant anecdotal evidence" of vulnerable individuals "feeling pressurised" to agree to do not resuscitate (DNR) orders and suggestions that particular groups, such as people with learning disabilities in care settings, had been placed on DNRs "when this was not clinically justified".

The findings are outlined in a paper by healthcare academics at Edinburgh Napier University, who were among those commissioned by the Inquiry chair, Lady Poole, to provide expert analysis and recommendations on areas for investigation.

Their conclusions are independent and non-binding on the inquiry.

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Two Covid-19 guidance documents - 'Clinical Advice' and 'Ethical Advice and Support Framework' - were issued on April 3 2020 amid fears that hospitals could face a similar crisis to northern Italy, where hospitals were overwhelmed.

The researchers said the guidance anticipated "more restrictive prioritisation of access to critical care and particular treatments such as ventilators", but criticised a "virtual absence of any reference to human rights" and said the focus appeared to be on reassuring clinicians such decisions would not place them "in legal jeopardy".

While the guidance "encouraged" doctors to speak to patients about their care preferences - including whether they would wish to undergo CPR in the event of a cardiac arrest - this "arguably focused less on the need to maximise respect for patient autonomy, and more on ensuring that people who are perceived as less likely to benefit will agree not to be admitted to critical care".

There were fears at the time that Scotland, and the rest of the UK, would see hospitals overwhelmed with Covid admissions as had been the case in hard-hit northern Italy

This "potentially discriminatory approach" is mirrored, they said, in another document which asked clinicians to consider factors such as whether a patient depended on help for daily activities or was a nursing home resident "with the clear implication that these factors, whatever their cause, weigh against access to critical care".

In the end, lockdown slowed the spread of the virus and Scotland's ICU surge capacity exceeded demand during the first wave.

However, the researchers said it remains unclear whether the guidance had "a real world effect" in terms of some people being "wrongly denied access to treatment".

NHS Scotland has a baseline capacity of 173 ICU beds capable of providing 'Level 3' critical care (e.g. mechanical ventilation where a patient needs help to breathe). This was escalated to a maximum surge capacity of 585 beds capable of providing mechanical ventilation. ICU demand, from Covid and non-Covid patients alike, peaked at 44% above baseline at 249 patients on 10 April 2020 when care was often delivered in areas of the hospital re-purposed to provide intensive care. Although the top threshold of 585 was never breached, researchers said it remains unclear whether clinical guidance led to some patients being inappropriately discriminated against (Source: Scottish Intensive Care Society Audit Group)

The paper also calls for the Inquiry to investigate whether DNR orders were applied inappropriately, pointing to examples where an 86-year-old woman with dementia was reportedly asked to consent to an DNR out of the blue in a telephone call from a locum GP.

Other cases include a deaf man in his 60s living in supported accommodation who was placed on a DNR without his knowledge, and a patient "apparently placed on a [DNR] inappropriately and without their knowledge" in a hospital where "the practice of completing such a form was linked to decisions about whether the patient should have access to a ventilator".

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This breaches rules which stress that a DNR relates only cardio-pulmonary resuscitation and should not preclude access to other treatment, including an ICU admission.

The researchers note that several organisations including Scottish Care, Age Scotland, and Inclusion Scotland repeatedly raised concerns that they were being "inundated" with stories of DNRs being applied on a blanket basis - for example to all residents in a care home - contrary to human rights law, or "slipped into" patient medical notes.

While the decision to impose a DNR is a clinical decision and can be imposed despite opposition from a patient or their next of kin, failing to consult them is a violation of human rights law.

In most cases, a DNR order is advised because patients are very frail with significant underlying health problems which mean that CPR would be futile and, even if it succeeded, could cause harm and distress and result in such a poor quality of life that the patient would not value it.

The first lockdown helped to stem the spread of the virus and prevent hospitals being overwhelmed, but researchers said it remains unclear whether the clinical guidance issued in April 2020 led to some elderly and disabled people being discriminated against over access to care

Inclusion Scotland said it had received "harrowing anecdotal evidence" of disabled people receiving letters at the peak of the first Covid wave telling them a DNR would be put in place if they were to be hospitalised.

Heather Fisken, Inclusion Scotland's head of policy and research, said: "Personal evidence shows that notices were placed on disabled people's medical records without their consent, or they were put under pressure to accept a DNR.

"Despite this, there is still no official evidence or analysis, so we still do not know the scale of the problem or how many lives were lost because of potentially discriminatory attitudes and practices.

"This should never have happened, and it can't happen again. Disabled people and their families need full transparency and concrete reassurances that they won’t be denied treatment simply because they are disabled."

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Michelle Supple, director of charity services at Age Scotland said: “In the early weeks of the pandemic, we spoke to family members whose older relatives were either forced to sign a DNR, despite lacking the mental capacity to do so, or found a DNR among their belongings after being discharged from hospital.

“Covid-19 has disproportionately affected older people and from all the direct evidence we’ve heard, it's clear the DNR form seemed to be acting like a tool to almost write some older people off before they were given a fighting chance.

"We’ve repeatedly issued calls to get to the bottom of this. It originated somewhere and the practice is wholly, wholly wrong.”

A Scottish Government spokesman said it had established the independent Scottish Covid Inquiry "to provide scrutiny and answers to the questions people have about the handling of the pandemic", but stressed that there had been "absolutely no change in guidance to the use of Do Not Attempt CPR forms in NHS Scotland, and no change to the advice issued to clinicians about their use".

He added: “We continue to expect healthcare professionals to discuss treatment options openly and honestly with patients, and their families where appropriate, to help ensure that they get the care that is right for them given their specific medical circumstances.”