Rationing Care, Weighing Lives: How COVID-19 Equipment Shortages Can Harm Patients

According to the Daily Beast, the increasing spread of COVID-19 is causing real problems around the globe – and not just in the way that you might think. This viral pandemic has infected over 2 million people, with around 130,000 deaths. But in the United States, COVID-19 injects a new issue into the medical care system: equipment shortages. Because the novel coronavirus often causes severe respiratory symptoms for hospitalized patients, hospitals are now having to determine which patients receive care – and which don’t.

This is scary in and of itself. Ethical questions abound. Is it okay to weigh patient lives against each other? What makes one patient life more valuable than another? How do we view patients with prior medical conditions or rare diseases?

COVID-19 and the USA

The United States currently leads the world in COVID-19 related deaths, sitting at just around 26,000 as of this morning. If social distancing measures are implemented, and patients are adequately treated, the Institute for Health Metrics estimates that there will be just under 69,000 deaths by August 4. However, there is a severe shortage of both ventilators and hospital beds, with numerous states already running out of ventilators.

This has prompted the development of rationing guidelines, which shape who will be treated if necessary. However, this must ensure fair and equal patient treatment. Says Dr. Jeremy Lazarus:

“Having the institution make the call, in a systematic way, about who gets a ventilator and who doesn’t is far preferable.”

However, rather than creating clear, non-biased guidelines, states like Kansas, Tennessee, Alabama, and Washington have implemented “crisis standards of care” that are discriminatory towards certain patients.

For example, Matthew Foster developed a cough in March. Even though he tested negative for COVID-19, the situation terrified Matthew and his family. That’s because Matthew has Down syndrome. In Alabama’s ventilator triage policy, they noted that people with “severe mental retardation… may be poor candidates” to receive ventilators if needed. Although the state has since created a more vague policy, this sets a frightening precedent. Just because individuals have a prior condition does not make them less worthy to live.

Additionally, it begs the question: who decides what disease or disorder is “severe” enough? Who should decide why someone doesn’t have a right to live just based on a prior, unrelated diagnosis?

Rationing Care & Weighing Lives

Medical Policies

Through examining policies and guidelines from 30 states, the Center for Public Integrity found a worrying trend: 25 advocated for considering prior patient information that may discriminate against patients with rare diseases, or conditions that some may consider “disabilities.” The other 20 states would not share their policies, or had none set. For the 25, information that hospitals may look at when determining who gets a ventilator include:

Some of these are outwardly discriminatory to those with prior conditions. However, patient advocates share concerns with other factors, like expected lifespan, as well. For example, African American men may have shorter lifespans than Caucasian men. But that does not mean our medical policies need to further infringe upon the rights of a marginalized community.

This could also cause problems for patients with rare diseases or other conditions, even if doctors don’t recognize their own inherent biases. Disability-rights activist Ari Ne’eman notes that:

“There is a long history of people with disabilities being devalued by the medical system…we don’t have an exception in our country’s civil rights laws for clinical judgment.”

Current Policy Issues

  • Florida and Oklahoma – their crisis treatment policies are considered drafts. However, both say that patients with cystic fibrosis should not receive a ventilator over other patients. Florida also includes a provision which states that hospitals could take ventilators away from people who require them for daily use if other patients require the ventilators more.
  • Colorado – the state is still working to update its guidelines, so they are not concrete.
  • Indiana and South Carolina – the states are not following triage guidelines but have no other rationing policies. An Indiana provision also states that hospitals could take ventilators away from people who require them daily if other patients need them more.
  • Alaska and Vermont – patients with cystic fibrosis are considered lower priority for ventilator use.
  • Wisconsin – though this state has guidelines, no health officials will comment on their use or implementation. However, it does note that patients with cystic fibrosis should be lower priority for ventilator use.
  • Texas – there is no triage policy and the state is attempting to use hospital guidelines from 6 years ago. These guidelines encourage doctors to consider dementia or other neurological disorders in rationing care.
  • Alabama, Pennsylvania, Utah, and Louisiana – advocate for doctors to consider dementia and other neurological conditions when rationing care.
    • Alabama’s new guidelines simply ask doctors to give medical supplies to the patients most likely to live, so that they can maximize life-saving endeavors.
  • Washington – state guidelines advocate for doctors to consider “baseline functional status” including energy, mental function and cognition, and physical function.
    • However, Washington is in the process of improving their guidelines with the help of medical experts, ethicists, and disability advocates.
  • Connecticut, New YorkKansas, and Minnesota – tell hospitals that they can take ventilators away from those needing them daily to give to other patients.

Advocating for Patient Equality During COVID-19

The current guidelines around rationing care and weighing lives feels almost akin to eugenics. We should not be looking at patients with rare diseases or other disorders as broken, because they aren’t. This is a strong, powerful, and supportive community.

Rather than looking at prior diagnoses or treatments, patient advocates believe that doctors should look at the full picture. Attorney Shira Wakschlag notes:

“The point is, are you looking at this person as a full individual and not using a bunch of external factors or value judgments about what their life is like? You have to look at the individual and not just work off stereotypes.”

Jessica Rowlands of the Cystic Fibrosis Foundation noted in a statement to the Center for Public Integrity:

“Care rationing decisions should not be based on outdated perceptions of cystic fibrosis and its prognosis.”

Some doctors feel that this would not necessarily work. After all, without considering underlying illnesses or past conditions, how can they ensure that the most lives are saved? At the same time, this presents an ethical dilemma because considering those may violate legal protections for individuals with rare diseases or other conditions.

Though Dr. Douglas White’s “model hospital policy” does take into account age in what patients should be given ventilators over others, he also notes that:

“Excluding certain groups of patients from any consideration for ventilators or ICU care really runs the risk of sending the message that are just some lives that are not worth saving.” 

Ultimately, the fears about rationing have uncovered some of society’s biases but also highlighted the need for change. Moving forward, more care needs to be put into setting policies that advocate for the safety and health of all patients.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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