‘In a health crisis, it is not only the virus that risks infecting society but our prejudices.’ Photograph: James Tye/University College London (UCL)/AFP via Getty Images
In a pandemic, triage starts long before some of us get sick. A new document issued by the British Medical Association (BMA) has set out guidance to ration treatment if the NHS becomes overwhelmed with coronavirus cases.
The BMA suggests that in cases where ventilators are scarce, those facing poor prognosis could have the life-saving equipment taken away from them – even if their condition is improving – with younger and healthier patients given priority instead.
We are already seeing this play out. Last week, one man tweeted that his brother, who lives in a care home with limited mobility and a cognitive disability, went to hospital with a chest infection but didn’t make “the pandemic-led prioritisation cut”. He died a week later.
Meanwhile, it has been reported that a GP practice in Wales issued “do not resuscitate” (DNR) forms to a small number of patients, ensuring that emergency services would not be called should they contract coronavirus and their symptoms worsen. One adult social care provider has said that three of their services have been contacted by GPs to say that they have deemed the people they support should all be DNR. One woman who has received the form so far is in her 20s.
These stories of disabled and older people being denied care have been emerging for weeks as the virus has struck hospitals around the world, but have generally failed to find attention outside the disability community until now.
The National Institute for Health and Care Excellence (Nice) was forced to make a U-turn last week on their advice for the NHS to deny disabled people treatment, but only after disability groups threatened legal action. Nice had told doctors they should assess patients with conditions such as learning disabilities and autism as scoring high for “frailty” - thereby meeting criteria to be refused treatment - based on the fact they need support with personal care in their day-to-day life.
In a health crisis, it is not only the virus that risks infecting society, but our prejudices. It’s a slippery slope of ethical compromises in a culture and medical system that already struggles to support people with disabilities. Research shows that an estimated 1,200 people with a learning disability die avoidably every year due to poor care, while the terms “learning disabilities” or “Down’s syndrome” have been given as the reason for “Do not resuscitate” orders.
In the coronavirus pandemic, doctors are having to make difficult clinical judgments: would a medical intervention help a patient or does their underlying health condition prevent them from benefiting? Is it better to facilitate a peaceful death rather than administer a futile and distressing treatment?
However, judgments based on the efficacy of treatment are not the same as judgments based on the quality of a disabled person’s life. That might be falsely equating support needs with “frailty”, or adopting a blanket policy that withdraws treatment from a whole group of people rather than basing decisions on each individual’s needs and choices. That isn’t healthcare, it’s discrimination.
These are complex issues and we are in deeply difficult times; medics are risking their own lives for the NHS and will face impossible choices as even oxygen and face pumps run low. But that should not mean abandoning debates around key decisions. Indeed, in an emergency it is more important than ever to question our attitudes and responses.
It is worth considering why the default position is to deny life-saving treatment to some disabled people rather than to ask why a wealthy nation that had months to prepare doesn’t have enough resources in the first place. It is worth considering whether talk of “limited resources” is excusing and normalising the long-held idea that disabled lives are disposable.
In recent days, I have seen disabled people take to social media to list their achievements, as if trying to make the case that they are worth saving. A disabled person who has their ventilator removed during this crisis may have gone on to cure cancer. But then, they may have just been loved. A mum with heart disease who always burns her daughter’s birthday cakes. An accountant born with muscular dystrophy who watches Dr Who every Sunday. Disabled people, like all minorities, are only fully human when we are permitted to be as wonderfully average as anyone else.
Utilitarian calculations over the value of certain people’s lives may appear pragmatic right now, but they cost us a part of ourselves. In the coming days, it is inevitable Britain will lose more lives. We need not lose our humanity too.
In a pandemic, triage starts long before some of us get sick. A new document issued by the British Medical Association (BMA) has set out guidance to ration treatment if the NHS becomes overwhelmed with coronavirus cases.
The BMA suggests that in cases where ventilators are scarce, those facing poor prognosis could have the life-saving equipment taken away from them – even if their condition is improving – with younger and healthier patients given priority instead.
We are already seeing this play out. Last week, one man tweeted that his brother, who lives in a care home with limited mobility and a cognitive disability, went to hospital with a chest infection but didn’t make “the pandemic-led prioritisation cut”. He died a week later.
Meanwhile, it has been reported that a GP practice in Wales issued “do not resuscitate” (DNR) forms to a small number of patients, ensuring that emergency services would not be called should they contract coronavirus and their symptoms worsen. One adult social care provider has said that three of their services have been contacted by GPs to say that they have deemed the people they support should all be DNR. One woman who has received the form so far is in her 20s.
These stories of disabled and older people being denied care have been emerging for weeks as the virus has struck hospitals around the world, but have generally failed to find attention outside the disability community until now.
The National Institute for Health and Care Excellence (Nice) was forced to make a U-turn last week on their advice for the NHS to deny disabled people treatment, but only after disability groups threatened legal action. Nice had told doctors they should assess patients with conditions such as learning disabilities and autism as scoring high for “frailty” - thereby meeting criteria to be refused treatment - based on the fact they need support with personal care in their day-to-day life.
In a health crisis, it is not only the virus that risks infecting society, but our prejudices. It’s a slippery slope of ethical compromises in a culture and medical system that already struggles to support people with disabilities. Research shows that an estimated 1,200 people with a learning disability die avoidably every year due to poor care, while the terms “learning disabilities” or “Down’s syndrome” have been given as the reason for “Do not resuscitate” orders.
In the coronavirus pandemic, doctors are having to make difficult clinical judgments: would a medical intervention help a patient or does their underlying health condition prevent them from benefiting? Is it better to facilitate a peaceful death rather than administer a futile and distressing treatment?
However, judgments based on the efficacy of treatment are not the same as judgments based on the quality of a disabled person’s life. That might be falsely equating support needs with “frailty”, or adopting a blanket policy that withdraws treatment from a whole group of people rather than basing decisions on each individual’s needs and choices. That isn’t healthcare, it’s discrimination.
These are complex issues and we are in deeply difficult times; medics are risking their own lives for the NHS and will face impossible choices as even oxygen and face pumps run low. But that should not mean abandoning debates around key decisions. Indeed, in an emergency it is more important than ever to question our attitudes and responses.
It is worth considering why the default position is to deny life-saving treatment to some disabled people rather than to ask why a wealthy nation that had months to prepare doesn’t have enough resources in the first place. It is worth considering whether talk of “limited resources” is excusing and normalising the long-held idea that disabled lives are disposable.
In recent days, I have seen disabled people take to social media to list their achievements, as if trying to make the case that they are worth saving. A disabled person who has their ventilator removed during this crisis may have gone on to cure cancer. But then, they may have just been loved. A mum with heart disease who always burns her daughter’s birthday cakes. An accountant born with muscular dystrophy who watches Dr Who every Sunday. Disabled people, like all minorities, are only fully human when we are permitted to be as wonderfully average as anyone else.
Utilitarian calculations over the value of certain people’s lives may appear pragmatic right now, but they cost us a part of ourselves. In the coming days, it is inevitable Britain will lose more lives. We need not lose our humanity too.