Stewart Brand, 81, doesn't want to be on a ventilator

Brand is a legendary writer and thinker, founder of the Whole Earth Catalog and co-founder of the Long Now Foundation. He's 81, and he tweeted about a topic that cannot be avoided during the Covid-19 pandemic: When is it time to say no to treatment?

This end-of-life question is not caused by Covid-19. For people who are elderly or have serious medical conditions, the possibility of making dire decisions in an emergency is always lurking in the mind. Covid-19 has brought these dark thoughts to the fore. While the virus remains a mystery in many ways, experts agree on at least one point: It hurts older adults and those with underlying medical conditions more severely. One of the most serious complications, acute respiratory distress syndrome (ARDS), can appear suddenly and require admission to an intensive care unit.

Brand now poses a question: should you go there? He opened the question on Twitter. "I'm mainly looking for data," he wrote. "Anecdotes, statistics, videos, information, etc., are the material to make the right decisions."

Brand's quest is supported by his wife, Ryan Phelan, who has a background in healthcare. Responses have poured in, some citing scientific research on a piece of medical equipment often cited as key during the most critical phase of Covid-19 treatment: the ventilator. This complex, invasive device is necessary to treat acute respiratory distress syndrome (ARDS). But at what cost? What is the price of the trade-off?

Brand is healthy and active. Anyone who knows him - including my friend - can see that his mind is as sharp as ever and that he is working on a number of projects with great success, including a workshop for the Long Now Foundation; writing a book on "Maintaining All Things" ” (maintenance of everything) and helping to resurrect extinct animals like the passenger pigeon. He is also the subject of a new documentary (We Are As Gods). While Brand has no reason to believe he has Covid-19, he knows he might, and if he does, he may not have time to make prudent decisions. So he approached the possibility with his usual sobriety.

"I know that being on a ventilator is a scary thing," Brand told me about his thought process. But the response on Twitter made him think more deeply about success rates. The disturbing first paragraph of the Wikipedia article on ARDS, which states: "Among those who survive, a reduced quality of life is more common." He also knows that the process of intubation itself can be very Uncomfortable, most patients require massive sedatives and sometimes a near coma; when they are conscious, their urge is to have the tube removed.

Given this, he wondered what the odds were of intubated Covid-19 patients living to breathe on their own. The research he's referring to is early and based on small samples, with dismal results.

Over the next few days, Brand's Twitter stream was flooded with science and anecdotal information, as well as messages from fans thinking about their options before the infection forced them to make a decision.

Brand and his wife, Ryan Phelan, have made a living will and expressed a desire not to undergo further treatment (do-not-resuscitate orders). Now they're thinking about another question: Should they go out of their way to create a "do-not-ventilate directive" and risk premature death?

Over the years, he has made contributions in ecology, computing, sustainability, and many other fields. In mid-March, when he tweeted about whether ventilators made sense, the discussion about ventilators was dominated by the looming possibility that they were too few to be available to those who desperately needed them. patient. States scrambled to find spare ventilators, and manufacturers were being asked to redeploy assembly lines to make new ones. Refusing intubation was rarely discussed.

But in the days that followed, things quietly changed. Articles from The Associated Press, The New York Times and The Washington Post also expressed Brand's ongoing concerns. The Associated Press reported that while the death rate for people on ventilators is typically high because it is only used for seriously ill patients, in New York, the death rate for Covid-19 patients was higher than expected. Yes, some patients survived. However, as the Washington Post article (The dark side of ventilators: Those hooked up for long periods face difficult recoveries) points out, many may face long-term complications or suffer severe side effects.

I checked with Dr. Robert Wachter for a reality check. He is a professor and chair of the department of medicine at the University of California, San Francisco. He confirmed the results were dire - ARDS patients generally had a higher mortality rate.

Some of these studies had very small sample sizes. When other studies reported results, a large number of patients in the study were still on ventilators — their fate is unknown — making it difficult to get accurate mortality rates. Taken together, these studies show that mortality rates vary widely. Perhaps most importantly, Covid-19 is a new disease. Research is still ongoing, and it's too early to give a firm answer.

Meanwhile, Robert Wachter told me about his experience at UCSF. While this is a small sample, Wachter said he has seen about half or more of the patients on ventilators return to breathing on their own during this crisis. Still, he acknowledged Brand's point that the process can be painful.

"It's not fun to be on a ventilator for a few weeks in an intensive care unit," he said. "Some people will have some degree of lung scarring, but it's too early to tell the long-term consequences for these people." But looking at the results from ARDS patients -- it's unclear if Covid-19 will make a difference The result - it's worth weighing the pros and cons. "Some of them are a little bit worse than they were before, but not serious. Most of them will be close to where they were before."

When I contacted Brand in early April, his first words made clear his views on ventilators. "The odds are low," he wrote. "The torture sucks." In fact, when we talked, Brand and Phelan told me they had decided they didn't want to be intubated. Even for a minute.

Brand and Phelan are not saying that everyone should refuse intubation. They advocate that people think carefully and consider taking steps to ensure their wishes are respected if Covid-19 puts them at extreme risk in an emergency room.

For many, the right choice is indeed intubation. Ventilators save lives, ideally maintaining the breathing process while the body fights the virus. Take New York City attorney David Lat, founding editor of a blog called Above the Law. On March 16, he entered NYU Langone Hospital with Covid-19, and four days later, his condition got worse. Larter hadn't read Brand's tweet, but he later recalled that he did remember the warning his doctor's father gave him. "You'd better not be on a ventilator. That's not good." Still, Larter gave in, and for the next six days he was in a near-coma while intubated. Then, on the seventh day, he got off the machine and started breathing on his own.

He is still recovering. His vocal cords were damaged, and he wasn't sure if his voice would ever fully recover. But these are nothing compared to the joy of being alive. “Whether or not to go on a ventilator is a personal decision, and I can understand why some patients, such as those who have a hard time surviving even on a ventilator, would reject that option,” he told me in an email. "But for me, a 44-year-old with a 2-year-old son, I want to see him grow up and I want to live."

Stewart Brand also wanted to live. But if doing so might require a ventilator, he would choose to die. I hope he never has to go to the ER with his "do-not-ventilate directive" pinned to his chest. But some of us, too many, go to the emergency room. That moment, Brand believes, is not the time to weigh options. If instead of chaotic decision-making in the emergency room, decisions were made calmly at home, there might not be as much panic and fear. Now is the time to think about it.

Compiled from: Wired article Stewart Brand Is 81—and He Doesn't Want to Go on a Ventilator