A report due to be launched this week by disability advocacy organization Inclusion London affirms the fear many disabled people have experienced throughout the pandemic over being denied life-saving treatment, should they become seriously ill with coronavirus.
In the report entitled, “Abandoned, forgotten and ignored – the impact of Covid-19 on Disabled people”, several survey respondents attested to being pressured by their doctor to have DNR, or Do Not Attempt Cardio Pulmonary Resuscitation orders placed on their medical records.
This is further supported by research carried out last month by disability charity Scope, which found that 63% of disabled people feared they would not receive the treatment they needed if they were hospitalized due to coronavirus.
A more insidious practice has also been brought to light in which some doctors have been placing unlawful DNR orders on the records of individuals with learning disabilities without prior consultation with the person’s family or carers.
Turning Point, a social enterprise providing health and social care services across over 300 locations in the U.K., along with Learning Disability England, responded earlier this month by producing a new information pack to educate parents and carers about DNR orders and the steps they can take to challenge them.
Turning Point has seen a total of 22 such orders since April requiring immediate challenge. Over the same period, Learning Disability England has observed 20% of its member organizations reporting doctors placing DNR orders on the records of individuals they represent.
Announcing the new guide, Julie Bass, Chief Executive at Turning Point, said: “It is not only illegal but outrageous that a doctor would decide not to save someone just because they have a learning disability. They have the same right to life as anyone else.”
In the U.S., several states including Tennessee, Washington, Kansas Pennsylvania and New York have issued protocols deprioritizing the treatment of disabled people in the event of scarce medical resources.
Additionally, Alabama was compelled in April by the Office for Civil Rights to abandon its crisis management policy of “denying ventilator services to individuals based on the presence of intellectual disabilities, including ‘profound mental retardation’ and ‘moderate to severe dementia.”
In the U.K., the government has come out very strongly against the use of “blanket DNRs” for certain patient segments. However, despite criticism from opposition parties, it has resisted publishing national guidelines, instead preferring to rely on the judgment of the medics on the ground.
The Specter of Eugenics
It is in this space that whispers of ruthless medical utilitarianism and Nazi-era eugenics began to surface within disability communities.
Ideas around eugenics or selective breeding emerged during the early 20th century and became a key component of the master race ideology. The Nazis dismissed disabled people as “useless eaters” and a drain on society.
After coming to power in 1933, the party waged war on Germany’s disabled population, initially through a program of forced sterilization and later through so-called “mercy killings” by lethal injection of disabled children and young adults in hospitals and care settings.
Later, as WWII drew on, greater scale and efficiency were brought to bear through the use of gas chambers and death camps.
Such comparisons may seem extreme but they underscore the paradigm shift that many disabled people fear has taken hold across society over the past few months, as the world recalibrates itself in response to the coronavirus.
During regular, less tempestuous times, individuals with disabilities are widely accepted as an additional thread within society’s rich tapestry, an embodiment of certain facets and frailties inherent in the human condition.
However, genuine fear exists that such acceptance and tolerance become frayed and conditional when the needs of someone with a disability come into direct conflict with those of an able-bodied person.
In such instances, for example, hospital ventilator allocation in times of scarcity, qualities of worthiness and overall usefulness to society are brought to the table.
Right throughout the pandemic, disabled people have feared that the veneer of tolerance normally afforded them, would be quickly scorched by the flames of fear, panic and the survival instinct engulfing society at large.
Nevertheless, context remains key in appraising the approach those in the medical profession, some of whom also lost their lives, have taken to managing the crisis.
Back in February and March, television screens were awash with images of overwhelmed hospitals in the Lombardy region of Northern Italy. Doctors there were having to make heart-breaking decisions about the allocation of scarce medical resources.
By late March, a credible fear was spreading that such scenes would be replicated in hospitals all over the world.
Worst case scenario planning became necessary because to simply respond on the hoof and wait for events to unfold, as the virus soared towards its peak, would have cost even more lives.
Inevitably, briefings and soundings found their way into the mainstream media and were justifiably highlighted by disability rights organizations as well.
Thankfully, despite a huge death toll and other grave societal harms, a capacity breaching surge overwhelming frontline health services was not a widespread phenomenon. Ventilator rationing and blanket DNR orders on a large scale mostly remained a grim thought exercise, rather than a practical undertaking.
Do Not Resuscitate: A Longer-Term Perspective
Dr. Abigael San is a clinical psychologist with over 15 years of experience working in the NHS and specializes in the treatment of disorders arising from anxiety and trauma. She says she fully understands the devastation many disabled people have expressed concerning the idea of being left to die from Covid-19.
“We’ve all got a basic survival instinct,” she says. “To be pushed into the category of not being worth saving would be extremely invalidating and depressing for many people.”
She is, however, cautious when it comes to the longer-term psychological consequences.
“There is, of course, a risk that there is going to be a mental health crisis across the whole of society when all this is over,” she says.
“How we deal and respond to that, the stories we have around that, are going to be really important.
“I think, in the fullness of time, many disabled people will reflect back on an extremely stressful time that spoke to the core of their worthiness and position in society.
“Hopefully, many will conclude that it doesn’t mean that all of those things they were made to think at the time are true in terms of their value and it doesn’t necessarily mean that they will experience traumatic symptoms in the future.”
This suggests that many disabled people will not lose sight of the extreme and specific context which forced the medical profession into conversations about ventilator allocation and DNRs.
Some, however, may be less forgiving if the post-pandemic world fails to address some of the underlying contradictions and societal biases that may have subconsciously informed worst-case scenario planning.
Writing last month on the topic in The Yale Law Journal, Samuel R. Bagenstos, a professor of law at the University of Michigan Law School, states, “To the extent that disabilities do harm the quality of one’s life, that is often because of discrimination and societal decisions that have rendered significant opportunities inaccessible.
“To use those harms as a justification for denying life-saving treatment to disabled people imposes a form of “double jeopardy.”
“Societal discrimination against people with disabilities causes them to experience less full lives, which social institutions then offer as a reason for making the further decision to deny these already-disadvantaged individuals essential benefits.”
Answers to these profound medico-ethical quandaries might not be found in further scrutinizing the relatively short period of dystopian panic that set the world ablaze in early 2020.
Building a more just, open society after the pandemic is over will not make the moral complexities disappear either. It would, however, be a significant stride in the right direction.
Gus Alexi, Forbes