COVID-19 focus should be building intensive-care capacity, not 'who comes first' lists, ethicist says
Image from The New York Times
By Louise Kinross
Yesterday, disability activist Ari Ne’eman wrote about how pandemic guidelines have historically excluded disabled people from receiving critical care, and noted that this kind of rationing was playing out in Italian hospitals treating COVID-19 patients.
"Patients with disabilities may require more resources than the nondisabled," he wrote in this New York Times piece. "In a crisis, the nondisabled can be saved more efficiently. As a result, when doctors must choose between a disabled and a nondisabled patient with similarly urgent levels of need, the nondisabled patients should get priority, since they will recover more quickly, freeing up scarce resources."
Some of the guidelines Ne'eman referenced were written 10 years ago. For example, these 2010 Alabama guidelines say intellectual disability could bar someone from a ventilator. Doctors are advised to assess "premorbid function in all domains of life including social, intellectual, professional," before making a decision.
But does prior intellectual function predict whether someone will recover faster? This directive seems to move away from a person's likelihood to recover, to their likelihood to contribute to society in a certain way, post-recovery. Do we ask non-disabled patients what their social, intellectual and professional contributions are, in order to receive care?
"The philosophical framework that is frequently cited is utilitarianism, premised on a conception of the good that is based on that which brings the greatest benefit to the greatest number of people," says Dr. Franco Carnevale, a clinical ethicist, nurse and psychologist at McGill University and its affiliated hospitals. "In my opinion, it's a grave ethical error to use only this kind of thinking in the current COVID-19 situation, because some are arguing that we can withhold medically required care from one person in order to care for another person deemed of greater value to help survive. This is based on non-clinical criteria that have nothing to do with the efficacy of the treatment."
In 2009, a pandemic protocol published in the Canadian Medical Association Journal, and adopted by many Canadian hospitals, recommended patients who would benefit from life support be denied it if they had severe cognitive impairment, advanced neuromuscular disease like muscular dystrophy, or quadriplegia. This protocol is no longer online.
These 2010 Utah guidelines exclude people with spinal muscular atrophy type 1 and those with progressive neuromuscular conditions like muscular dystrophy who can't sit unaided or walk.
Ne'eman in The New York Times links to 2015 New York State guidelines that permit doctors, during scarcity, to take away a ventilator from a person who presents at hospital with their own machine used in the community or in long-term care.
These 2020 pandemic plans from the Washington State Department of Health direct doctors to consider transferring patients with decreased baseline functioning, including physical and cognitive ability, to outpatient or palliative care.
Meanwhile, the U.K.'s National Institute for Health and Care Excellence (NICE) just directed NHS doctors to use a clinical frailty scale (CFS) to help identify patients during COVID19 who are at "increased risk of poor outcomes and who may not benefit from critical care interventions." Two of the key scoring factors are "level of dependency on other people for activities of daily living" and "cognitive status."
However, after a number of people and parents tweeted yesterday that this would exclude them or their children from care, NICE added this caveat: "Do remember that the CFS has only been validated in older people; it has not been widely validated in younger populations (below 65 year of age), or in those with learning disability [i.e. intellectual disability]. It may not perform as well in people with stable long term disability such as cerebral palsy, whose outcomes might be very different compared to older people with progressive disability. We would advise that the CFS is not used in these groups."
Carnevale suggests the world's priority focus needs to be finding creative ways to build our supply of ventilators and life-support resources to deal with growing COVID-19 needs, "not on coming up with a hierarchy of who should come first. It's a profound breach of fundamental respect for persons to withhold needed life-sustaining care."
Carnevale was head nurse of the pediatric ICU at Montreal Children's Hospital for over 20 years.
"I've dealt with many crises including ice storms and the H1N1 virus," he says. "Our approach was always that it would take a heck of a lot to deliberately withhold needed care from someone. We would never ever remotely contemplate that until after we 'moved mountains.' For example, operating rooms have ventilators and the OR could function as an ICU. Some emergency rooms have ventilators and can provide ICU care. Post-op recovery rooms could do some ICU care. In some emergency situations, like the ice storm, we prepared to manually ventilate patients with ambu-bags, which is sometimes done when transporting critically ill people."
This 2006 article in the Journal of Applied Physiology looks at the "heroic" solution to a poliomyelitis epidemic in Copenhagan in 1952: 200 medical students provided round-the-clock manual ventilation to patients over several weeks.
Theresa Brown, a clinical faculty member at the University of Pittsburgh School of Nursing, wrote in this New York Times piece that about 23,000 medical students and 100,000 nursing students are close to graduating in the United States, and could be employed in COVID-19 efforts.
Carnevale recalls that in the 1970s, his pediatric ICU manually ventilated some newborns around the clock because their respiratory rates were too high for the ventilator machines of the time.
"I worry that some of these 'who gets the last respirator?' dilemmas, within the resource-rich Canadian context, are sometimes concealing underlying views about some people being less worthy," he says.
Earlier this month, Frank M. Snowden, author of Epidemics and Society: From The Black Death to the Present, shared a similar sentiment in an interview with The New Yorker. The way we respond to a pandemic, he said, "very much depends on our values, our commitments, and our sense of being part of the human race and not smaller units."
Snowden paraphrased a recent comment by Canadian Bruce Aylward, who led an independent World Health Organization mission to study the spread of the virus in China: "We have to think that we have to work together as a human species to be organized to care for one another, to realize that the health of the most vulnerable people among us is a determining factor for the health of all of us, and, if we aren’t prepared to do that, we’ll never, ever be prepared to confront these devastating challenges to our humanity."