Over the past several months, the disability community on Twitter has been exceptionally vocal and angry about how governments and hospitals are managing the coronavirus (COVID-19) pandemic. They have raised concerns about the stress on our healthcare system and about lack of care and prudence from able-bodied people who feel they do not need to worry about a pandemic. Concerns about being devalued by the healthcare system have reached an intense roar.
The fears of resource rationing go beyond masks.
Medication is now being actively withheld from those who have been taking it regularly to stay functional and in some cases to stay alive. Politicians are suggesting that the economy is more important than the lives of the citizens who run that economy.
On Monday, the New England Journal of Medicine published a paper titled “Fair Allocation of Scarce Medical Resources in the Time of Covid-19.” Rationing is already here. In the United States, perhaps the earliest example was the near-immediate recognition that there were not enough high-filtration N-95 masks for health care workers, prompting contingency guidance on how to reuse masks designed for single use.
Physicians in Italy have proposed directing crucial resources such as intensive care beds and ventilators to patients who can benefit most from treatment. Daegu, South Korea — home to most of that country’s COVID-19 cases — faced a hospital bed shortage, with some patients dying at home while awaiting admission. In the United Kingdom, protective gear requirements for health workers have been downgraded, causing condemnation among providers. The rapidly growing imbalance between supply and demand for medical resources in many countries presents an inherently normative question: How can medical resources be allocated fairly during the COVID-19 pandemic?
I want to emphasize that despite my criticism of the NEJM article, I don’t blame providers for making hard decisions. I understand that people will die because we do not have the resources to manage all needs. I have a problem with calling it “fair” though. I have a problem with redefining words to make situations more palatable.
I have a problem with the comfort with which the words “fair” and “equal” are used in attempts to make these actions sound reasonable, normal, inevitable and/or right. Nothing about this situation is “reasonable” or “normal.” There is no easy way to determine who gets support and who doesn’t — which NEJM acknowledges. Sanitizing and systemizing the situation does not necessarily aid in making universally “correct” decisions, but it may ease decision-making itself. Likely at a cost.
We can not forget that people will die, often because of decisions made which do not incorporate a specific individual’s situation, but because it has been predetermined that it’s “not worth” saving someone like that person. We also need to acknowledge that medical staff are facing a situation that reduces their ability and freedom to make individual decisions. Overall, the United States has lacked appropriate collective response from citizens, various industry and manufacturing entities, and most of all from the country’s leadership.
I know medical professionals will likely experience trauma, will lose people they care for and will have lasting effects from these experiences. My plea is that we do not forget the people making these decisions are people — the medical staff, the patients they support or don’t, the administration that determines these policies and the loved ones left behind. They are all individuals with lives, loved ones, future plans, past struggles and worth. We need to hold on to our humanity. We also need to support the providers on the front lines now and well after the crisis has passed.
That said, talking about “fair” medical resource allocation means deciding some people deserve to die and some deserve to live. The authors used the word “fair” or “fairness” in the paper 10 times. Variations of “equal” are used seven times. The emphasis on these words suggests there is a universally ethical way to prioritize the survival of some patients over others and that ethic is guiding the restriction of medical support according to a person’s deservedness. There is not.
A system designed to determine who lives and dies is not “fair.” It cannot be — and suggesting there is a way to “fairly” decide survival assumes we can easily assign value to each person based on age or disability status. The article addresses this in the excerpt below:
Because maximizing benefits is paramount in a pandemic, we believe that removing a patient from a ventilator or an ICU bed to provide it to others in need is also justifiable and that patients should be made aware of this possibility at admission. Undoubtedly, withdrawing ventilators or ICU support from patients who arrived earlier to save those with better prognosis will be extremely psychologically traumatic for clinicians — and some clinicians might refuse to do so. However, many guidelines agree that the decision to withdraw a scarce resource to save others is not an act of killing and does not require the patient’s consent.
Based on this excerpt, the suggested truths from the article are:
- A systemized way of assigning the right to survival is ideal and such a system could possibly be fair.
- Knowingly taking specific action resulting in another’s death — given the right context — is not killing them.
- It is justifiable to take away life-saving resources and procedures from someone and give them to another if it is in accordance with specific procedures and policies.
- It is appropriate to relieve people of the burden of these decisions and their effects.
Prioritizing some lives means not prioritizing others. Deciding who lives is also deciding who dies. As the conversation around this becomes more prevalent, don’t use euphemisms like “fair.” Don’t try to gloss over the reality.
“Rationing health resources” is a kind of violence, as the forceful removal of consent always has been. It is complex and ugly and brutal. Every medical staff on the front line has to deal with these decisions. We need to actively and collectively acknowledge that the situation and resulting decisions are horrific.
Do not forget:
Any process that systemizes life and death will involve actual people — the people who live, the people who die, the people who will or will not abide by the system. Proposals for rationing are ultimately based on age, disability and perceived “usefulness.” We need to see and hear the people who are being reduced to “resource users.”
Being old or being disabled is not more deserving of death. It does not reduce or remove personhood. Being younger or more abled is not more deserving of life. It does not amplify or induce personhood. Do not ignore the consequences of devaluing lives.
How do we “fairly” allocate scarce medical resources in a pandemic? We can’t. We have to acknowledge that — and the consequences of it — in our collective grief.
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