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Wachter, meanwhile, told me about his own experiences at UCSF. Although it is true that it is a very small and unscientific sample, Wachter says that during this crisis, he has seen that about half or more of ventilated patients breathe alone again. Still, he acknowledges Brand’s point that the process can be heartbreaking.
“Being in the intensive care unit with a ventilator for a couple of weeks is not fun,” he says. “Some people will have some degree of lung scarring later, but it is too early to know what the long-term results are for these people.” But judging by the outcome of ARDS patients, and it’s not clear that Covid-19 cases will have different results, the offsets may be worth it. “Some of them are a little bit worse than they were before, but not massively. They don’t have the exercise tolerance they had before they got sick, but it’s not like you go out and be a vegetable. Most people will get pretty close to their previous state. “
Still, he respected Brand and Phelan’s clear approach, especially since it was backed by an effort to examine the scientific data. But he cautioned that the decision must be made in the context of general end-of-life planning rather than a Covid emergency. “If you’re someone who has thought about this a lot, and you just wouldn’t want to be on a breathing machine for whatever reason, are sick, or are old, it’s perfectly reasonable to use this as an opportunity to articulate that you don’t want us to do.”
Bioethicist Scott Halpern, a professor at the University of Pennsylvania and an emergency physician, agrees with Wachter that if the current crisis leads people to deal with end-of-life-related problems, that’s a good thing. “This is a time for people to think clearly about what is important to them,” he says. That could include contemplating an order not to air.
But Halpern suggests that the question is not necessarily a binary between whether or not to access a fan. It may make sense to specify what happens next: some people may want to give specific directions for a scenario where organs fail and the prognosis is bleak. “Most people would want mechanical ventilation for a short period of time, and most people would not want it indefinitely,” he says. “Instead of thinking‘ I want a fan; I would not want a fan, “think about the states of health that you would find tolerable or unacceptable.”
For the moment I contacted Brand in early April, his first responses indicated where his thoughts regarding the fans had settled. “The odds suck,” he wrote me. “The torment stinks.” In fact, when we spoke, Brand and Phelan told me that they had decided that they did not want to be intubated. Even for a minute.
Brand used the term “self-triage”, saying he was making a polite assumption about the odds of success versus compensation. Since Phelan, 67, is 14 years younger than Brand, he could be looking reasonably 25 or more good years, I asked him why she was so sure. “Twenty-five years of committed life would be unacceptable to me,” he said, specifically citing his fear of an impairment that would require constant attention. When I spoke to them, they were discovering how, if they needed hospitalization, to ensure that their wishes were respected.
Phelan took the lead in investigating the necessary documents. She consulted an old friend, Frank Ostaseski, the director of the Metta Institute, who is dedicated 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 anyone reasonably healthy should voluntarily accept a ventilator to combat the sudden respiratory assault of a Covid-19 infection. But when he examined it more closely and studied the chances of survival, he changed his mind. “I don’t want to die in a fan and in a coma and not be around the people I love,” he says. “If possible, I want my condition to be managed at home. I want access to morphine. “
Ostaseski has extensive experience with living wills and medical directives, but he acknowledges that Covid-19 has unique challenges, because the development of ARDS in these patients can happen very quickly. “As a culture, we don’t necessarily want to see the possibility of our death before it’s on our doorstep,” he says. For people at higher risk, it makes sense to break down the multiple decision points they might face if the symptoms become overwhelming. “The first point is: am I going to the hospital? Second: When I go to the hospital, do I let myself go through the emergency room to the ICU? The third is: Do I get ventilation? Those are all the options presented to patients and the decisions are quick. So if I go to the hospital, I want to come in with my advanced care directive, literally attached to my body. “
