The Argument for Making End-of-Life Decisions Early

By WIRED Staff

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?