Back in March, counterculture icon and Whole Earth Catalog founder Stewart Brand made a statement on Twitter that surprised some people: He had decided, and had communicated to his wife and the rest of his family, that if he got sick from the coronavirus, he wanted to refuse invasive procedures, including being put on a ventilator. It sparked a conversation about medical freedom and what it takes to have a sense of agency over death.
This week on Gadget Lab, WIRED editor-at-large Steven Levy has a conversation with Brand and his wife Ryan Phelan about their decisions, and why it's important for people to have conversations about their medical wishes.
Read more from Steven Levy’s conversation with Stewart brand here. Follow all of WIRED’s coronavirus coverage here.
Steven Levy can be found on Twitter @StevenLevy. Stewart Brand is @stewartbrand. Ryan Phelan is @Ryanphelan6. Lauren Goode is @LaurenGoode. Michael Calore is @snackfight. Bling the main hotline at @GadgetLab. The show is produced by Boone Ashworth (@booneashworth). Our executive producer is Alex Kapelman (@alexkapelman). Our theme music is by Solar Keys.
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[Intro theme music]
Lauren Goode: Welcome to Gadget Lab. I'm Lauren Goode, a senior writer at WIRED, and I'm joined remotely by my cohost, WIRED senior editor, Michael Calore.
Michael Calore: Hello, hello.
LG: Hey Mike. How's it going in San Francisco?
MC: It's nice and quiet, just how I like it.
LG: We're also joined this week by WIRED editor-at-large, Steven Levy, who is dialing in from New York City. Steven, thank you for being on the show this week.
Steven Levy: Thanks, great to be back on the podcast.
LG: The last time we had you on the show, we were talking about the book you had just published about Facebook, which wasn't that long ago, but it feels like a really long time ago.
SL: Yeah, yeah. That was on the beginning of my book tour, actually was turning out to be towards the end of my book tour.
LG: All right. Well, for the past several weeks in this podcast, we've been focused almost entirely on the Coronavirus, the way it's impacting our lives and our communication with one another, our country's lack of testing, how or if our society might ever go back to "normal" and so much more. This episode is also about the effects of COVID-19, but it's a uniquely personal episode. Earlier this week, Steven here had a conversation with Stewart Brand and Ryan Phelan, Stewart's wife. Many of you who follow WIRED might be familiar with who Stewart is. He's the founder of the counterculture magazine Whole Earth Catalog, and he's someone who was very prominent early on in the hacking community back in the 80s, which is when Steven first became acquainted with him.
Now, back in March, Stewart Brand made a statement on Twitter that surprised some people. He had decided and had communicated to Ryan and the rest of his family that he wanted to refuse invasive procedures such as being put on a ventilator should it come to that. And this was at a time that was, I mean, not that long ago, but it feels like a long time ago, when there was a lot of information pouring out about how some COVID patients required ventilation and that there weren't enough ventilators to go around. So this week on the podcast, we hear directly from Stewart as to how he arrived at this decision. And Steven conducts the interview. Steven, thanks for doing that. What made you want to talk with Stuart about this topic?
SL: Well, I was really struck and disturbed that Stewart, who I've known for many years and see him as kind of a mentor, certainly an inspiration, was talking about his death essentially and whether he should refuse the ventilator, which at that point was being described almost as a miracle machine that would help people when they got really sick with COVID. Stewart also was very much ahead of the curve on everything. Right around that time he was also saying that soon people are all going to be wearing masks, so that was the time when folks were saying that citizens shouldn't be wearing masks. And even in his discussion about the ventilator at that time, while everything was so positive about ventilators, within a few days after his post, I saw articles in The New York Times, The Washington Post, AP, sort of questioning how valuable these ventilators were. And I think Stewart saw that data in real time that helped him make his decision.
MC: One of the things in his original tweet was that he was questioning what the post-ventilator experience would be like. When you come off the thing, are you going to be happy that you went on it? Is it going to harm your life going forward? I felt that it was really interesting that he was asking those questions.
SL: Well, both he and Ryan, as you'll hear in the interview, had previously done living wills, do not resuscitate, but COVID presents unique challenges because you're not going to have time normally to make these kind of careful decisions. When you go to the emergency room, you can't breathe, they're going to intubate you if they think it's going to save your life No matter what you have in your living will unless you've got everything all ready and everything all lined up to refuse it if that's the decision you make. And one big reason to make that decision is, especially if you're an older person... Stewart is 81... that the odds of living the rest of your life and maybe needing care is an alternative that he doesn't want to risk.
LG: We should also note, and this is something that's discussed in the interview, that these are decisions that Stewart and Ryan have arrived at themselves. They're not advocating for other people to make the same decision or to refuse ventilation should it come to that or any other kinds of end-of-life support. They're simply saying they had this conversation with their family. It's probably a good reminder for people to have these kinds of conversations with family or those closest to you right now, as difficult as it is because a global pandemic really forces you to think about these end-of-life scenarios. And this is how they arrived at their decision. So without any further windup, let's hear directly from Stewart and Ryan.
SL: I want to thank Stewart Brand and Ryan Phelan for coming on our podcast today. And we're going to talk about a story I wrote in WIRED this week that sprang from my viewing a tweet that Stewart posted on March 20th. Stewart, tell me what you tweeted then and why you tweeted it.
Stewart Brand: I was getting a sense that a whole lot of people were getting the disease already then, that part of March, and going off to a hospital and then finding themselves quickly moved from the emergency room into ICU and then often intubated on ventilators without any kind of just a damn minute along the way. And I was hearing some of this from Ryan, who's very familiar with emergency room procedures, and I just thought wait a minute. When did we get a chance to sort of say, "I might have some options I'd like to know about before I get zoomed into something I might regret and then be totally helpless to change?" And once you're intubated, you belong to the hospital, no longer to yourself.
SL: And Ryan, were you looking over his shoulder? Did you know this was happening? Or did this spring from discussions the two of you were having?
Ryan Phelan: Absolutely from discussions we were both having, Steven, because our noses were buried in the news every morning, noon and lunch, it felt like, trying to make sense of what was going on with this rapid escalation of this healthcare crisis.
SL: What happened after you tweeted, Stewart?
SB: I suspected there would be some response, some pushback, but mainly I was just looking for information. I'm astonished, depending on who you follow on Twitter, what an extraordinary resource it can be for very rapid, sometimes very sophisticated, information. And that's what I was looking for.
RP: I think the very first time you tweeted about it, Stewart, it was a bit of a surprise that you were talking about end-of-life online like that. And I remember one of the first comments was, "Hold on, old man, don't start culling the herd." And I thought it was such a great response. It was actually sort of respectful in this funny way. But what we realized is that he was almost a bit verboten to talk about not utilizing state-of-the-art technology. And coming from us as technophiles to say wait just a minute, I think it was particularly surprising.
SL: Well, it was startling to me because I should say that we're friends, and I've known both of you for quite a while, and the thought of losing you is scary. And I'm sure to both of you, the thought of losing yourselves is scary. And you mentioned, Ryan, that moment. This was March 20th, which seems like an eternity away talking about it over a month later now. At that moment, there was this feeling about ventilators that the association we had with them was oh my God, we're not having enough. And it was all about where do we get them? What's going to happen? Is there going to be some sort of triage when you show up at the hospital where they're going to decide this person is not ventilator-worthy, right?
RP: Right. Do we step aside and say, "Oh, let that 18-year-old have it instead, right?"
SL: Yeah, exactly. So the idea of saying, "Well, do I want to ventilator?" was counter to the conventional wisdom of that time.
RP: Well, it was interesting because it felt like everyone was forgetting the fact that a lot of people were not going to be happy on a ventilator. It was going to be extraordinarily painful, and for some people psychologically damaging. I mean, people have had very adverse reactions to going through intubation, not to mention a longterm impact of other clinical issues. And it felt like we were all rooting for more and more ventilators when no one was really questioning whether or not they were right for everyone or whether everyone really wanted them.
SL: Right. And I should say going into this, both of you, because Ryan, you have a background in healthcare, you actually worked at the Zen Hospice in San Francisco, correct?
RP: Yes, I did during the early AIDS crisis.
SL: And so you had given thought to end-of-life, and you have orders of do not resuscitate under certain circumstances. But this ventilator thing, from what I understand, was a new twist, particularly with this disease rampant.
RP: Very much so. The current medical director, that hopefully more and more people are ensuring that they have in their medical record, really draws the line at do not resuscitate. That's sort of the take control kind of moment. But that doesn't apply when you're in that ICU and they're talking about intubation and ventilation.
SB: Ryan, wait a minute. Is a ventilator not a resuscitator? Is resuscitation just your heart has stopped or something? What's the deal?
RP: That's the whole idea, is that prior to COVID, that was our big concern, is that people would have a massive heart attack and maybe even result in brain damage, but that they would continue to put them on life support and keep them going through resuscitation. But now with COVID, that's not the big issue. It's respiratory failure.
SB: Right. So going on with COVID, as I understand it, is your heart's still going OK, so they're not doing resuscitation, but your lungs are either filling up with crap and you're having this acute respiratory distress syndrome and they immediately intubate you or your oxygen level in your blood is way the hell down, which I guess is a COVID specialty, and they originally figured the only way to get oxygen to you was to intubate you at that point. But I understand now with some practice and realization of the kind of poor results coming with ventilators is first they will try proning you, turning you over on your belly and giving you oxygen through a mask or a through a cannula and see if they can fix your oxygen level that way. That's my understanding.
RP: Yeah. And Steven, we should both mention we are not medically, clinically savvy. We're aware of what's going on and paying close attention. But mostly what we're concerned about is this question of will we as potential patients, and will others like us, have the agency to make a decision about end-of-life issues in the time of COVID.
SL: Yeah. I'm glad you said that because I want to set the context of this. You're looking at this for your own purposes, what's right for you.
RP: Exactly.
SL: You're not telling other people not to do this. The overall reason you're sharing it is to make people aware that they should think for themselves about this issue. Correct?
SB: Look, Steven, this is a reunion of the hackers conference we're having right here because we got to know you back in '84 when you did the hackers book, and then Ryan organized the hacker's conference, and you and I and she were all at it. And the whole hacker approach is that you mess with the technology, you take it seriously, you learn it, you embrace it, and then you fuck with it. And in a way, this is sort of a hacker response to ventilators of deciding how you want to relate to this particular technology. It's not a given. And you want, like Ryan said, agency over how it's fucking used. Excuse my language.
SL: That's OK. I'll forgive you for that.
LG: We're going to pause for a moment and take a quick break here. We'll be right back.
[Break]
SL: So the data you were getting, and you specifically said, "Give me data. Give me information here," did you find it discouraging what you learned?
SB: It was tremendously encouraging how people took the question seriously and then had their antennae out to see what was going by, and then they would pass it on. And sometimes it was what somebody would say, but mostly it's the links. I think Twitter, really its strength is in the ability to link to things. And I would go and look at some of the stuff that people offered as links, and it was all pretty supportive of doing a just a damn minute about ventilators in particular.
RP: So to say it another way, Stewart, it was alarming when we read the statistics that it was more than half the people do not survive. And then there were numbers upward from 60 percent up to 88 percent of people who did not do well after ventilation. And that was really alarming. It was supportive of us taking a stance on this, but it was a terrible thing to be reading about.
SB: So given those statistics, and the deal is now you're talking about dying one way or another, if it's eight out of 10 die on the ventilator, would you rather die on a ventilator alone surrounded by people that look like they're on Mars, if there are any people at all and paralyzed or in a coma and having been there using up, among other things, five or six extra personnel to keep all of your system semi-functional, or is there another option? And this is where Ryan's knowledge really comes in. Is there a comfort center? Is there a hospice center? Can I have some opioids now, please? And just park me in a corner rather than go through being put in a coma and intubated.
RP: Really the question is how do you die with dignity, pain-free when you're in great respiratory distress? I mean, we don't really know the answer to that, Steven.
SL: Well, I think the thing that makes me uncomfortable... And I should mention that all of three of us are people of a certain age. Stewart is a little more certain. He's 81.
RP: Hey, by the way, you didn't do the math right, Steven. I'm 14 years younger than him.
SL: Oh really? I gave you a break.
RP: No, you made me-
SL: Oh my God. You're fact checking me on the air. I'm ruined. You're right. That's true. You are 67. Stewart is 81.
SB: Right.
SL: I'm, uh, 69, I think. I can't do my own math.
SB: What do you mean you think? That's a weird thing to say.
SL: At a certain point, you really don't want to face it.
SB: Oh, I see. OK.
SL: But anyway, so I'm looking at this and thinking wait a minute, from my point of view is I don't want to flip over the cards and say, "That's it. Give me the morphine," at a certain point. And I have to say, when I talked to some other people, some real doctors, they were saying that, yeah, that is true about the outcomes of people on ventilators. Half, and in some places in New York City, it's even even more, that this 80 percent don't get off the ventilator. But they were also saying there's sort of a middle ground, that you can go for a couple days, and maybe that'll fix you and it won't be so bad, but the longer you're on a ventilator, then the worse the outcomes are. Then your organs might start to fail, and then you're really looking at these permanent disabilities, and you might need care for the rest of your life. So I left those people thinking, hmm, maybe in for a couple of days, then we'll see where it goes. And there's only more complicated. But both of you chose, isn't this right, to say no, not a minute on the ventilator?
RP: And I'll tell you why, Steven. Because the nice continuum that you just drew there. You start in and you do a day or two, and maybe things will escalate. Maybe they won't. The problem is when they escalate, you're not in control. And Dr. Halpern, who you interviewed for your article, said the same thing, that yes, some people do fine. But the point is you lose that agency when things go really bad, and that's the part that's really scary. You don't get to decide well, now I'm going to be on for two weeks, and I'm never going to really come off.
SB: So Ryan, can you imagine as my medical advocate, so they've taken me away from you in hospital, and even though I have this directive stapled to my chest or something, they ignore it because things are moving quickly and they just throw me on the ventilator and into the ICU down at the end of the corridor. And then they finally get your phone and they get in touch with you, and you say, "How's he doing?" And they say, "Well, we think he's going to be OK. He's on the incubator." What do you do at that point? And how do you make it have any effect?
RP: I know this is a horrible scenario, Stewart, because you're there against your will. Anyway, it's a very tough scenario.
SB: Well, can you talk me off the ventilator once I'm on it? Can you as my advocate do that?
RP: Without being able to storm in there and raise bloody hell, I don't know how I will be able to do that, Stewart.
SL: So let me push back on this, Ryan. I spoke to Dr. Robert Wachter, who is the head of medicine at UCSF, the University of California, San Francisco, big hospital in San Francisco. And he told me that he confirmed Stewart's suspicion that he just went in there without a directive and verbally said, "I don't want a ventilator," and you're gasping for air, they're going to overrule it, thinking well, this person might not be thinking straight. They'll intubate you. But after a couple of days, if it turns out you do have a medical directive, that it's for real and your advocate is pushing back, they will respect those wishes. So the two-day scenario seems plausible, which is why I went back and asked you again, Ryan, about that. Are you sure? I'll give you another shot at that for that because, I mean, you could have many years ahead of you. There are cases where people spend a brief time on a ventilator, some even a longer time, and wind up OK or maybe have something that they can live with. You thought hard about that and still not worth it for you, huh?
RP: Steven, one should never say never, but my feeling is that it puts everyone in a very awkward situation to pull somebody off a ventilator that might want to or need to die at home. And that's a terrible responsibility for others to take. And so I'm willing to take it for myself and to say, "Just don't go there with me." If I got really sick, I would absolutely want to go to the hospital. I'd want to get morphine and whatever drugs gave me relief. I'd love to get treatments, like the new drug that just is being discussed. But if things are really, really critical, I'd like to get packed up and taken home.
SL: And so both of you made this decision, and then you found, as we mentioned earlier, there's no form that you just pull down that describes how to do this.
RP: No.
SL: You had to basically roll your own medical directive for this unique circumstance for the decision that a lot of people face, right?
SB: Well, that's the hacker response. Write your own code.
RP: That's right. It was sort of a hacker job here. And thanks to Katy Butler's good book, which, Stewart, you know the name of.
SB: It's The Art of Dying Well.
RP: Yeah. She had good guidelines in there on how to do a medical directive. Luckily, it was easy to pull down and edit away. And I had the good fortune of conversing both with Katy and our own personal physician. We shared versions of things like that, and Frank Ostaseski, formerly from Zen Hospice, he was awesome. So we all kind of converged on what kind of language, and I ran off and got it notarized just in case somebody was going to give us any pushback.
SL: I should say when Stewart published his medical directive on Twitter, he got an immediate reply from someone else, a follower, asking if that person could use it as well. And of course, Stewart, in true hacker spirit, said, "Go right ahead."
RP: Right, exactly. Do with it what you want. So our hope is that people just make thoughtful decisions. Number one, everybody should have a medical directive. It's crazy not to. And it's a gift to the people who love you.
SL: Yeah. And I finished the story with an uplifting tale of someone who was on the ventilator for 17 days. Oddly, the day he went on a ventilator was the day that Stewart posted his first tweet, March 20th. His father, who was a doctor, told him, "Don't let them put you on a ventilator," but he was a 44-year-old man with a two-year-old son. And he's off the ventilator now. It affected his vocal chords. He's not quite sure whether he's going to sing in the opera again, but he's really happy that he was on the ventilator. Do you imagine, either of you, that new data will come in that might make you change that directive? Or are you confident that that's just going to be it?
RP: Well, I hope we will continue to be open-minded, as we have always tried to be in life. Stewart, I can't speak for you. What do you think?
SB: The technology may get enough better that it's not as a ferocious, a kind of one-way trip, as it largely is now. And just like they discovered proning is a good thing to do, maybe they'll find out a way to do intubation for COVID that is not as drastic and largely irreversible thing. And of course, we would adjust the nuance to that. But I think it's the case that you sort of want your medical directive to be adaptive to what's going on in medicine at the time anyway. And in a way, that's what this whole thing is. It's a directive for now. Next year it might be something different.
SL: And how tough was it to go through this process? I think a reason why a lot of people don't do this is because it's so difficult to just imagine yourself not there anymore, and even picturing the circumstances is super scary for a lot of people.
RP: I think it was scary. Talking with someone you love about losing them and losing yourself, it's a tough conversation. But I think for both of us, it's empowering. When you think about taking some agency over your life, it's very empowering.
SB: Otherwise, there's enough feeling of helplessness about death anyway. To be able to dial it down even a little bit in terms of being able to take some anticipatory control over some aspects of it, like reduce the suffering and up the control, all of that seems like an improvement.
RP: And actually the best part of it all was getting it done and to quit talking about should we do this? How do we do this? And just it was ticked off the to-do list.
SL: Well, I hope those directives will never have to be used and you'll both be around for a very long time.
RP: Yes.
SL: And I really want to thank you both so for sharing your process so candidly with us.
SB: Our pleasure. May it proliferate out there.
RP: Thank you, Steven.
LG: All right, that's our show for this week. Thank you, Steven, for joining us and for that great conversation.
SL: Well, thanks, Lauren and Michael. It's always great to be on this podcast.
LG: And you can also read about Steven's conversation with Stewart Brand and Ryan Phelan on WIRED.com. Thanks also to Stewart and Ryan, of course, for coming on the show. And thanks to all of you for listening. If you have feedback, you can find all of us on Twitter. Just check the show notes. This show is produced by Boone Ashworth. Our executive producer is Alex Kapelman. Goodbye for now. We'll be back next week.
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