Wachter, meanwhile, told me about his own experiences at UCSF. Though admittedly a very small, nonscientific sample, Wachter says that during this crisis, he’s seen about half or more of the ventilated patients breathe on their own again. Still, he acknowledges Brand’s point that the process can be harrowing.
“Being in the intensive care unit on a ventilator for a couple of weeks is not fun,” he says. “Some people will have some degree of lung scarring afterward, but it’s too early to tell what the long-term outcomes of these folks are.” But judging from the result of ARDS patients—and it’s not clear that Covid-19 cases will have different results—the trade-offs can be worth it. “Some of them are a little worse for wear than they were beforehand, but not massively. They don’t have the exercise tolerance that they had before they got sick, but it’s not like you come out and you’re a vegetable. Most people are going to get fairly close to their prior status.”
Still, he respected Brand and Phelan’s clear-eyed approach, especially since it was backed by an effort to examine scientific data. But he cautioned that the decision should be made in the context of overall end-of-life planning rather than a Covid emergency. “If you’re somebody who’s thought hard about this, and you just wouldn’t want to be in a breathing machine for whatever reason—you’re sick or you’re old—it’s perfectly reasonable to use this as an opportunity to articulate that you wouldn’t want us to do.”
Bioethicist Scott Halpern, a professor at the University of Pennsylvania and an ER physician, agrees with Wachter that if the current crisis leads people to grapple with end-of-life issues, that’s a good thing. “This is a time for people to think clearly about what’s important to them,” he says. That could include contemplating a do-not-ventilate order.
But Halpern suggests that the question is not necessarily a binary one between acceding to a ventilator or not. It might make sense to specify what happens next: Some people might want to give specific directives for a scenario where organs fail and the prognosis is grim. “Most people would want mechanical ventilation for a short period of time, and most people would not want it indefinitely,” he says. “Rather than think about ‘I want a ventilator; I wouldn’t want a ventilator,’ think about what health states you would find tolerable or unacceptable.”
By the time I contacted Brand in early April, his first responses indicated where his thoughts had settled regarding ventilators. “The odds suck,” he wrote me. “The torment sucks.” Indeed when we talked, Brand and Phelan told me they had decided that they did not want to be intubated. Even for a minute.
Brand used the term “self-triage,” saying that he was making an educated guess at the odds of success against the trade-offs. Since Phelan, at 67, is 14 years younger than Brand—she might be reasonably looking at 25 or more good years—I asked her why she was so certain. “Twenty-five years of compromised life would be unacceptable to me,” she said, specifically citing her fear of an impairment that would require constant care. When I talked to them, they were figuring out how, if they needed hospitalization, to assure that their wishes would be respected.
Phelan took the lead on researching the necessary documents. She consulted an old friend, Frank Ostaseski, the director of the Metta Institute, which is devoted to education about end-of-life alternatives. For years he ran the San Francisco Zen Hospice, and Phelan trained with him there during the AIDS crisis. Ostaseski’s first thought was that any reasonably healthy person should willingly accept a ventilator to fight the sudden respiratory assault of a Covid-19 infection. But as he looked into it more closely, and studied the odds of survival, he changed his mind. “I don’t want to die on a ventilator and in a coma and not be around the people I love,” he says. “If possible, I want my condition managed at home. I want access to morphine.”
Ostaseski has extensive experience with living wills and medical directives but recognizes that Covid-19 has unique challenges, because the onset of ARDS in those patients can happen so quickly. “As a culture, we don’t necessarily want to look at the possibility of our death before it is on our doorstep,” he says. For people at most risk, it makes sense to break down the multiple decision points they might face if symptoms become overwhelming. “The first point is: Do I go to the hospital? Second: When I go to the hospital, do I let myself go through the ER into the ICU? Third is: Do I go on ventilation? Those are all options that get presented to patients and decisions are quick. So if I go to the hospital, I want to go in with my advanced care directive literally taped to my body.”