Respirators, rationing and the disabled
Six years ago, oncologist and bioethicist Ezekiel Emanuel wrote a provocative article entitled “Why I hope to die at 75.” He also supports use of quality-adjusted life years, which discount the value of a life lived with disability, to allocate health resources. His point? Some lives (seniors and people with disabilities) are worth less than others (young people in good health).
Why, particularly in a time of crisis, would CNN or the New York Times profile Emanuel as an “expert” telling America how to ration care, dictating who should “live or die”? Please stop. We are better than this.
In Emanuel’s view, old age “renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world…We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.” He quotes a textbook from more than 100 years ago calling pneumonia a friend of the aged.
Today, the public health crisis of COVID-19 puts this point in stark reality. Indeed, health care providers in Italy are facing this exact, and terrible, choice: Should they give the ventilator to the person with cystic fibrosis or without? Do they take it away from one patient to give to another deemed more worthy?
By Emanuel’s cold logic, we would give it to the patient with fewer pre-existing conditions and move on. Yet every public policy response we have seen to date is the exact opposite. We want to avoid this choice, and do everything we can for every patient, because every person has equal value.
This is the right response. Yet it is one that, in day-to-day health policy debates, we have come terribly close to abandoning.
Many so-called experts and policy-makers promote making health-care coverage and payment decisions based on blunt cost-effectiveness standards that ignore the needs of the individual and discriminate against those at the margins, like those with disabilities and seniors.
Let’s put this in perspective.
Dr. Anthony Fauci from the National Institutes of Health, perhaps the best known and respected leader in this COVID-19 crisis, is 79. Our sitting president is almost 74 and Joe Biden is 77. The three top Democratic leaders in the House of Representatives and the Senate Majority Leader are over 75.
Regardless of political leanings, I say each has value and I would certainly not argue their age or disability are characteristics that diminish their ability to lead. For some, I would argue with age comes experience and wisdom that is appreciated in this crisis.
Right now, we need leadership directing resources to the most vulnerable populations, not away from them. Health officials in the administration are taking aggressive steps to ensure anyone with COVID-19 can access the care they need. Similarly, leaders in Congress like my friend Sen. Bob Casey and many of his Senate colleagues are getting this right by calling for steps to protect people in nursing homes, older adults and people with disabilities.
People susceptible to infection know better than anyone what is coming and have preached good hygiene and social distancing when sick long before this crisis. Despite required accommodations under the Americans with Disabilities Act — which I coauthored when in Congress — how many job applications from people with disabilities got trashed because they needed telecommuting options?
People with disabilities understand very clearly what is at stake in this crisis. Will we as a nation rise above fear and reaffirm our value for every person, regardless of their age or abilities? Or give way to fear and retreat to self-preservation?
We will remember not just this crisis, but how we responded and learned from it. It is my hope that we look back knowing we did everything in our power to protect those most vulnerable and emerged a more inclusive nation.
Coelho is a former member of Congress and disability advocate.