Life in the time of COVID-19: The Portrait of a High-Risk Patient
“It would be easier if they just shot me.”
Recently we have asked people to make great sacrifices to flatten the curve, and as we languish at home as domestic prisoners, the temptation to stop social distancing exponentially grows. The vicious vagaries of this strange new life- they make requests to reopen the world and return to business as usual sound not only reasonable, but also make alternative approaches seem draconian. Yet the reality is not so simple. What if I told you that your decision to flout these rules about physical distancing and healthy at home orders could ensure a dear friend of mine died in one of the worst ways imaginable? What if I told you that she is already so assured that she will die this year because people won’t comply with social distancing that she is getting her affairs in order? Chava Charna (not her actual name; pseudonym her own) is a 30-something-year-old immunologist, married mother of 3, currently getting an MPH (degree #4 and has a second doctorate planned immediately following the completion of her MPH)- you know, one of those perennial students. If Chava gets COVID-19, the chances that it will kill her are extremely high. Chava has a condition called myasthenia gravis (MG). This is an autoimmune disease which makes muscle contraction considerably more challenging. To manage this condition, she takes two immunosuppressants (Soliris and Imuran). Patients who have MG can sometimes experience a myasthenic crisis, the most severe exacerbation of MG. The most common trigger is infection, which can be disastrous for someone taking immunosuppressants. A myasthenic crisis is essentially when profound weakness of the muscles that control breathing in a patient with MG results in respiratory failure.
“Crisis hits FAST. All of a sudden, no air is coming in.”
This usually requires intubation to manage. The problem is that weakness in the muscles controlling the airway make it harder to ensure that patients can protect their airway (i.e. ensure it is clear and patent so that gas exchange can occur) without the tube. Therefore, patients must often spend a certain amount of time intubated without sedation to ensure they can be safely extubated. Chava has had two myasthenic crises. In the first one, she spent seven days with an endotracheal tube, completely conscious. The first crisis caused her to literally die in her living room–the inability to force oxygen into her body caused her to become so hypoxic it stopped her heart. That happened at her daughter’s birthday party. A bit less than four weeks later she had a second crisis, and spent eight days intubated, fully conscious.
“Legally you can extubate without my consent. But if I fight, sedation without consent is still a legal grey area. That means I’ll be awake and fighting while they, what? Tear my trachea in half?”
COVID-19 is known for its propensity to put people on ventilators- sometimes for as long as eight weeks. If Chava gets it, she would spend some period on a ventilator, conscious, after which it will be judged that her probability of survival is too low for brutal utilitarianism to bear. In all likelihood, we don’t have the luxury of wondering “if” it will happen–rather it is “when”; something that an individual with Chava’s prodigious knowledge of infectious disease is acutely aware of.
“Taking me off vent and leaving my three kids without a mother would be a monstrous decision for both my family and the physician making that call… I’m really sick of the spicy takes explaining how my death is somehow both necessary and meaningless.”
Given her comorbidities, the unconscionable scarcity of ventilators, PPE, beds, and other basic resources, the medical system has basically dropped all pretense that it would make more than a nominal attempt to save Chava if she got COVID-19. She might endure anguish on a ventilator before someone deemed her probability of survival too low to justify the resources being expended on her.
“If I get this, I’m demanding Dilaudid and to be allowed to die. I don’t stand a chance. Especially since it’s perfectly legal to pull me off vent without my consent. Remember, I don’t get sedation. It’s torture.”
Chava can do everything right- she can stay home, quarantining, isolating herself from society, and it still won’t be enough. And Chava isn’t the only high-risk patient. Here is my earnest, improper plea: as difficult and unimaginable as it is to continue this, stay home, stay six feet apart–even with warming weather beckoning us outside to play- and stay safe. Because the dreadful reality is that not only can we not save everyone, but for a decent portion of people we won’t — and can’t — even try.