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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 have 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 rampant disease.

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 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 mention both 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.


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