The replies tumbled in, some citing scientific studies, and within a day Brand was pressing his followers about the piece of medical equipment often cited as the linchpin of Covid-19 treatment at its most critical stages: the ventilator. This complicated and invasive apparatus can be necessary to address ARDS. But at what cost? What were the trade-offs?
Brand is healthy and active. Anyone who knows him—including me, a friend—can see that his mind is as piercing as ever, and he is fruitfully pursuing a bounty of projects, including hosting seminars for the Long Now Foundation; writing a book on “maintenance of everything,” and helping to revive extinct animals like the passenger pigeon. He’s also the subject of a new documentary. It would be devastating to lose him. Though Brand had no reason to believe he had contracted Covid-19, he knew that it was possible he eventually might, and that if he did, there might not be time to make careful decisions. So he approached the possibility of pulling his own plug before it was even close to being plugged in with his usual clear-mindedness.
“I knew going in that the ventilator is a pretty violent event,” Brand told me of his thought process. But the Twitter responses led him deeper into the question of success rates. He wanted to go beyond the disturbing first paragraph in the Wikipedia article about ARDS, which said: “Among those who survive, a decreased quality of life is relatively common.” He also knew that the process of intubation itself could be uncomfortable, requiring most patients to be heavily sedated, sometimes into near-comas; when they are conscious, their impulse is to tear out the tubes.
Given this, he wanted to know what the odds were that intubated Covid-19 patients would live to breathe on their own again. The research he was pointed to was early and based on small samples, but discouraging. A recent Lancet article with results from a Wuhan hospital in January reported that 86 percent of the patients who were intubated died. Research from the UK pointed to less dire but still troubling results.
For the next few days Brand’s Twitter stream was full of both scientific and anecdotal information, as well as contributions from followers who seemed to be pondering their own choices, well before an infection forced them to make decisions under pressure.
Brand and Phelan already had drawn up living wills with do-not-resuscitate orders. Now they were pondering another question: Should they specifically create a do-not-ventilate directive, at the risk of sealing their death prematurely?
As he has been on so many subjects over the years—ecology, computers, sustainability—Brand was onto something ahead of the rest of us. In mid-March, when he was tweeting about whether it made sense to go on a ventilator, the discussion about ventilators was dominated by the looming possibility that there would be too few of them to provide to patients who desperately required them. States were scrambling to locate unused ventilators, and people were demanding that manufacturers redeploy assembly lines to make new ones. There was very little discussion of the concept that someone might choose to say no to intubation.
But in subsequent days, an undercurrent of uncertainty crept into that narrative. Articles by the Associated Press, The New York Times and The Washington Post raised the same concerns that Brand had been stewing over. The AP reported that while the death rate for any one on a ventilator is generally high because it’s only used on very sick patients, the death rate for those with Covid-19 in New York was higher than expected—more than 80 percent of those whose cases had resolved, something that Gov. Andrew Cuomo would later repeat in his press briefings. The Post’s headline was “The Dark Side of Ventilators.” Yes, some patients survived. But, as the Post article noted, many could face long-term complications or suffered serious side effects.
I reached out for a reality check to Dr. Robert Wachter. A professor and the chair of medicine at UC San Francisco, he is also known as the father of “hospitalism,” a medical specialty involving coordinated care of admitted patients. His illuminating real-time tweets about his hospital’s handling of the pandemic have made him something of a medical celebrity. (I should say that he is also a friend.) Wachter provided a fascinating counterpoint to Brand and Phelan. He confirmed that the outcomes are dire—ARDS cases in general have a high mortality rate. But he felt that the early results, including the China study, might not hold up over time.
Some of those studies had very small sample sizes. Others reported results while a large number of people in the study cohort were still on ventilators—their fates yet unknown—which makes getting accurate death rates difficult. The studies taken together suggest a wide range of death rates. Most important, perhaps, Covid-19 is a new disease. The research is still catching up, and it’s too soon to have definitive answers.
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.”
It’s not enough to draw up a plan; doctors need to know your directive and recognize its validity. “They’re in the mode of ‘The patient is crashing,’” says Brand. “They have 10 minutes to save a life, and they’re not looking at do-not-resuscitate orders or things like that. And they’re just in the mode of ‘Here’s an emergency—solve it the way we know how.’
Wachter confirms that doctors will sometimes override even a strong verbal refusal of a ventilator. “If somebody comes into the hospital in respiratory distress, breathing twice as fast as normal, they are scared out of their wits,” he says. “It’s hard to think clearly in that state. And if you have no prior documentation, I would say, in most cases, we will overrule that and go ahead and put them off. We feel like there is a high enough chance that they’re not thinking straight.”
Ideally, this decisionmaking is backed by an advocate on the spot. “You may have a forceful care partner like Ryan saying ‘Just a goddamn minute—this is my husband and he has said he doesn’t want a goddamn ventilator and I will pull a gun on you if you take him out of here to be intubated,’” says Brand. “’I want more morphine for him.’” But Covid-19 patients are almost always separated from companions at the double doors of the emergency room.
After consulting with Ostaseski, Phelan set about writing a directive that she or Brand would presumably tape to their chest. While there are many guidelines for do-not-resuscitate orders, Phelan was unable to find a do-not-ventilate equivalent. Ultimately, she reworded a medical directive she found in a book by Katie Butler called The Art of Dying Well. The author herself helped out. Using his wife’s version as a template, Brand crafted his own directive and, of course, posted it on Twitter. He addressed it to Phelan and Alexander Rose, the head of the Long Now foundation and Brand’s alternate medical advocate. In it he lists the treatments he would welcome—including oxygen support through nasal cannula and drugs for pain—and what he rejects. Here it is, in part:
Dear Ryan and Alexander: You’re reading this because I am concerned, given the Covid-19 pandemic, that a time may come when I may not be able to make my own medical decisions.
As a human being in his 80s who currently has the moral and intellectual capacity to make my own decisions, I want you to know that I care about the emotional, financial and practical burdens that recovering from Covid-19 would likely place on me and those who love me.
As my medical advocates, please understand I do not wish to prolong my living or dying if it means going on a ventilator. So please let my wishes as stated below guide you …
WHAT I DO NOT WANT is for a visit to the ER or hospitalization to escalate into a stay in an ICU without my requests below being carried out.
If my condition deteriorates to the point where doctors are recommending I be moved to an ICU for ventilation, do not allow any attempt at ventilation or resuscitation … I wish to remove all barriers to a natural, peaceful, and timely death. Thank you for taking good care of me, —Stewart.
Right after Brand posted the directive, a follower asked if he could adapt it for his own use. “Enthusiastic permission!” Brand replied. “For anyone.”
Brand and Phelan by no means argue that everyone should refuse intubation. They are advocating that people give careful thought and consideration to what happens if Covid-19 puts them at extreme peril in the emergency room. And to take steps to make sure their wishes are respected.
For many, the right choice will indeed be intubation. Ventilators can save lives, ideally maintaining the vital breathing process while the body fights off the virus. Consider the case of David Lat, a New York City attorney who was founding editor of a blog called Above the Law. On March 16, he entered NYU Langone Hospital with Covid-19 symptoms, and four days later—the day that Stewart Brand posted his first should-I-ventilate tweet—took a turn for the worse. Lat had not read Brand’s tweet but, as he later recounted, he did recall a warning his physician father had given him: “You better not get put on a ventilator. People don’t come back from that.” Nonetheless, Lat submitted and spent the next six days in a near-coma while intubated. Then, on the seventh day, he was off the machine and breathing on his own.
He’s still recovering. Weeks later he can hardly walk. His vocal chords were damaged, and he isn’t sure his voice will ever fully return. But those are trivial in comparison to the happiness of being alive. “Whether to be put on a ventilator is a personal decision, and I can understand why some patients, such as patients in a lot of pain with long odds of surviving even if ventilated, might decline the option,” he told me in an email. “But for me, a 44-year-old with a 2-year-old son I’d like to see grow up—I wanted to live.”
Stewart Brand wants to live, as well. But if doing so may require a ventilator, he’ll opt for death. I hope he never has to make that journey to the ER, with his do-not-ventilate directive pinned to his chest. But some of us, too many of us, are destined to pass through those double doors—scared and gasping for breath. That moment, Brand would argue, is not the time to weigh one’s alternatives. Maybe there will be less panic and fear if decisions have already been made, not in the chaos of an emergency room but in the calm of one’s home. The time to think about it is now.
Updated 4/29/2020 7:00 pm ET: This story has been updated to correct the age gap between Phelan and Brand.
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