A GP Surgery in Somerset was forced into an embarrassing U-turn after it reportedly asked for autistic adults to sign “Do Not Resuscitate” (DNR) agreements in case they became critically ill.
The recommendation was received via letter to a care group, Voyage Care, as it navigates its role in supporting persons with autism amidst the coronavirus crisis. If followed, it would directly violate the fundamental right to equality of persons with autism, and contradict recent progress toward ending discrimination on grounds of disability.
In ordinary circumstances, DNRs are issued on an individual basis after clear communication with the patient, under the careful assessment of a physician as to whether resuscitation would be futile, against the individual’s wishes, or would not bear results within the individual’s best interests.
In May 2019, National Medical Director Professor Stephen Powis clarified that learning disabilities should never be a justification for issuing a DNR, emphasizing that they are “not fatal conditions”. Guidance from NHS England in response to the pandemic underlined that, “assessment and treatment for people with learning disabilities and/or autism are made on an individual basis and in consultation with their family and/or paid careers…Treatment decisions should not be made on the basis of the presence of learning disability and/or autism alone.”
The Somerset recommendation reverses the ethical structures inherent to the medical profession, and would prevent individuals from receiving necessary life-saving medical attention without cause. The apparent justification is the freeing up of coveted bed space for those deemed to have a better chance of survival, but without medical justification, this determination is both arbitrary and discriminatory.
As the pandemic continues, some have suggested that certain finite resources – like ventilators – should be provided to those with the greatest chance of survival. There is no evidence that autism results in a lower chance of survival from coronavirus. It therefore appears that this DNR recommendation is based more on prejudice than medicine.
The decision of the GP surgery to propose a blanket DNR based on autism is in stark contrast to the international legal standards that I interact with daily in my work as a human rights advocate at the United Nations. Only last month, I thanked the UN Special Rapporteur on Persons with Disabilities for championing human dignity in the field of bioethics. She noted that “the right to life includes the right to survive and develop on an equal basis with others. Disability cannot be a justification for termination of life.”
Choosing autism as a ground for non-resuscitation carries with it severe ethical implications. The exercise of recommending to any person, regardless of disability, that they sign a DNR without proper medical guidance will lack proper consent. In such circumstances, it cannot be said that the patient has made an informed choice. Coupled with the intense pressure on the healthcare system, it is possible that persons with disabilities will be encouraged to sign DNR orders in the name of altruism, without any medical justification.
Public figures with autism (including Greta Thunberg, Tim Burton, and Sir Anthony Hopkins) lend human faces to the remarkable contributions that persons “on the spectrum” have made to society; and point to the tragic implications of the proposed recommendation. Individuals should never be chosen to live on the basis of their fame or contributions. Neither should they be discarded for their unique challenges. If our conception of human rights is not sufficient to protect all of us equally in our diverse appearances, abilities and experiences, then it’s time to re-evaluate the principles of our approach.
Lois McLatchie, Legal Analyst (UN) for ADF International