TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. My guest is a critical care and palliative care physician who is among the health care professionals trying to find a more humane approach to helping people as they reach the ends of their lives. Dr. Jessica Nutik Zitter wants to help patients avoid what she describes as the end-of-life conveyor belt, where they are intubated, catheterized and die attached to machines, frequently without even knowing they're dying.

As a critical care doctor, it's her job to save lives. As a palliative care doctor, it's her job to decrease physical and emotional suffering. Some people see those two jobs as being at odds with each other. She doesn't. She works at a public hospital in Oakland, Calif. She's the author of the book "Extreme Measures: Finding A Better Path To The End Of Life." And she's the subject of the Netflix documentary "Extremis."

Jessica Nutik Zitter, welcome to FRESH AIR. You practice critical care and palliative medicine. Why is that considered unusual?

JESSICA NUTIK ZITTER: Well, hopefully it's becoming less unusual. And I'm meeting more and more people who are doing it. And I'm thrilled for that. I'm seeing definite changes in that. But you know, critical care - I mean I went into critical care because I really wanted to save lives. I wanted to rescue people from the jaws of death. And it wasn't until I got into it that I started to understand - and again, it was - for many years, it was very subconscious. It wasn't even a conscious thing. But I started to have this feeling that this activity was causing a lot of suffering.

And then eventually I was lucky enough to be exposed to the - a very early form of palliative care. It was before palliative care - it wasn't even called a palliative care team. It was called the family support team at a hospital that I worked at in Newark, N.J. And the nurse who headed that team was a palliative care practitioner, Pat Murphy. And she called it out like she saw it. She was very - you know, she didn't mince words. And she basically accused me one day of torture - torturing a patient who was dying.

GROSS: No, no, you got to tell this story because you tell this story in your book.

ZITTER: (Laughter).

GROSS: You were supposed to insert a dialysis catheter into the neck of a patient with metastatic breast cancer. And I take it that's a very painful procedure.

ZITTER: Painful, risky, you know, causes suffering during and after - you know, she has to lie under these drapes. Very - you know, her husband couldn't be with her. He had to go back to the waiting room. And this woman was so close to death. And we had been told, well, let's try cleaning her blood with - you know, because her kidneys were starting to fail. And I thought, OK, you know, I'll put in the catheter. We'll do dialysis through this catheter.

The procedure honestly, you know, has risks - small risks, but it could have killed her. It certainly causes discomfort. It's terrifying. Imagine lying - you're already so sick and feeling so ill, and you're lying underneath these drapes. And there's a whole bunch of doctors talking to each other - well, and you know, insert it through here, and push it this way. No, give it a little extra push, and twist it this way. And all of a sudden, I looked up, and I see this woman standing in the doorway. And it's Pat - you know, Pat Murphy, who's the head of this team.

And they had been in our ICU now for a few months because they had - this group had won this grant from the Robert Wood Johnson Foundation to study communication in the ICU. And I was like, who are these people? You know, I know how to communicate. I went to - I did my pulmonary fellowship. I did residency at a really great place. I mean I know how to take care of these patients. And I was kind of annoyed that they were always kind of looking over my shoulder, and I didn't really know why. And at this point, she's standing there, and she's tapping her foot. And she puts her hand up to her face like she's holding a pretend telephone. And she says, 911, call the police. They are torturing a patient in the ICU.

And all those years that I was telling you about before where I had sort of subconsciously been feeling, you know, just uncomfortable and a little bit of a moral crisis - like, oof (ph), I'm kind of hurting these people. I'm not really helping, you know, people who are dying. And all of a sudden, it just snapped into, like, complete focus for me. And I thought, oh, my goodness, she's right. You know what? What I'm doing is not helping this woman. And I just - it was a major shift for me from then on.

GROSS: But in that instance, you continued the procedure and inserted the catheter.

ZITTER: I did. And I certainly - as I say in the book, you know, that catheter did not change that patient's life, but it changed mine. I will never forget it.

GROSS: Did the patient soon die in spite of the dialysis?

ZITTER: Oh, she died the next day. Yeah, she died the next day. I mean - and you know, wasn't surprising to anybody.

GROSS: So you tell a story in your book about a patient. And the decision had to be made about whether to send her for palliative care or to do a major intervention. And she was, you know, an older woman. She was an Auschwitz survivor and not only that. Like, she was the only person in her family to survive. She and her twin sister had been the subject of experiments done by the famous sadistic Nazi doctor, Dr. Mengele. Her sister did not survive those experiments, but your patient did. So what were you presented with in the final days of her life?

ZITTER: It was such a constellation of strange events. I was called in by the team to see this patient. And they said, look; you know, she's - she has no family. She's really deteriorating. She has pneumonia, and she's really decided that she does not want to be intubated. And we really would like to provide her with some palliative care and have you bring her to the palliative care suite and make her calm and comfortable. And I thought, oh, OK, wow, you know, this is great. This is such a different approach than what I usually do.

And so I went into the room, and I see this woman. And she's a beautiful woman. She looked to me like Anne Bancroft. And she was really struggling to breathe. And I could see she - her lips were blue, and she was really - her - the oxygen saturation read I think 78 next to her bed. It's supposed to be a hundred. So she was really, really - had a very serious pneumonia. And I thought, oh, wow, let's get her comfortable, and you know, let's get her upstairs. And we'll give her some morphine, which is a medication which really, really calms the center of the brain that feels the sense of suffocation or shortness of breath.

So I started to look through her chart, and I started to get this history of - this woman had had, you know, this abdominal experimentation. And she had multiple bowel obstructions and had been hospitalized at that hospital many times for bowel obstructions. And as I read through and - on this particular admission, she had had a bowel obstruction and had aspirated because she had been vomiting from the bowel obstruction. And so she had developed a pneumonia on the basis of this. And this wonderful hospital team had been trying to treat her very, very aggressively with antibiotics. And she just wasn't getting better fast enough, and she was starting to tire out.

And so the moment when I was learning that she had actually been an Auschwitz survivor and I see her number on her arm, something kicked in in me that was very emotional. I have many family members who were also in the Holocaust. And it was a very personal experience, and I'm sure that there was a personal drive and my ICU training to - oh, my gosh, let's save this woman. And I went to the team. And I said, wait a minute. If we intubate her, maybe we can, you know, really give her a little rest and treat her with antibiotics. And the attending said, wait a minute. I've just spent all this time with her, and she really, you know - I said to her, do you want us to put the tube in, or do you want us to keep you comfortable? And she said, keep me comfortable.

And at that moment, the respiratory therapist piped in. And he said, well, wait a minute. I'm not sure she totally understood because by that point, she was so low on oxygen. So there was this just going back and forth, and it was really a struggle for all of us. And I could imagine that this woman wouldn't want to be intubated after all she had gone through. But I didn't know, and I felt very emotionally driven to save her. And so the story goes that I basically proceeded to make a bigger mess out of this case. And I tried to do other types of things without putting the tube down her to kind of help her with her breathing. And it ended up making things worse.

And you know, I don't know what the moral of that story is. I think it's really that you can sometimes - you know, you have to be careful not to get personally involved. And you have to also not let your own history of training drive you to do things that may not be what the patient would want. And there are things that we do from our training that are sort of muscle memory. And we have to really be careful to try and keep the patient, you know, in our vision all the time.

GROSS: Once a patient is on a ventilator, is it hard to take them off of it? Like, say you know that they would die if they're taken off of it. How hard is it for the family or for the patient themselves to give the directive, like, stop. It will end life, but make it stop.

ZITTER: It's so varied and depends on the situation. There's so many variables involved here. First of all, you know, is this patient conscious? Is this patient not conscious? Let me tell you. You know, taking a person who only has a lung issue as the only sort of life-limiting illness and the rest of the body is healthy - the mind is healthy - I mean I had a patient like this, for example. It was a man with terrible, terrible COPD but otherwise really just a vibrant guy who's probably 60. And, you know, the question was whether or not - we were never going to get him off the breathing machine. And he wasn't, for a variety of reasons, a candidate for a lung transplant.

And, you know, we went - it was a few days that we talked - his son and I and the patient because he was alert - about whether or not he would want to be trached (ph), you know, have a permanent attachment through his neck to the breathing machine and really - discussing it really in depth and what kind of a person was he and how did he like to live and would it be acceptable for him to live the way he would probably have to live for the rest of his life on this machine? And he decided no. You know, I can't live that way. And we ended up extubating (ph) him.

But those kinds of cases are very, very difficult - you know, very sad, very, very difficult. We can, obviously, keep people very, very calm and comfortable as they die once we take the tube out, but it's a grueling choice. It's a grueling decision. You know, if you kept the person on the machine, they'd still be with us and alive but living a life that for this particular patient was not acceptable.

GROSS: My guest is Jessica Nutik Zitter, a critical care and palliative care doctor who works at a public hospital in Oakland. She's the author of the book "Extreme Measures." We'll talk more after a break. This is FRESH AIR.

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GROSS: This is FRESH AIR. Let's get back to my interview with Jessica Nutik Zitter, a critical care and palliative care physician. She's the author of the book "Extreme Measures." What kinds of advance directives are most helpful to you as a critical care and palliative physician?

ZITTER: An advance directive is a really static form. It's a piece of paper. It's something that has a check, literally. If you look at it, in most states, they have a checkbox that's really, really high level very, very simplistic that says, if I'm not going to be restored to a quality of life that will be acceptable to me, I either - check box A - do want you to keep me alive on machines. Do everything you can to keep my body alive or, B, allow me to have a natural death. And it's a very important first order question. But the problem with it is it's not enough for a variety of reasons.

Number one, as people get ill, as people get old, their feelings tend to change. I mean, there's a lot of data on that. People start to change their own personal feelings and preferences and values about these things. So it's a dynamic evolving question for a particular person - how they're going to feel about that sort of high level, you know, approach. And second of all, you know, as the ICU doctor standing there when someone comes in to the hospital, if the check box says, if I'm not in a quality that would be acceptable to me, you know, let me die a natural death, that isn't helpful enough to me because I need so much more detail than that. What might be acceptable to one person, might be completely unacceptable to another. And so I need much more definition about what that means.

I once had a woman say to me, you know, my dad, he's a crusty old Italian. He told me, if I can't wipe my own behind, you better let me go. Well, I'll tell you. For me, I would be OK with someone else taking care of my personal hygiene if I couldn't do it. If I were cognitively and emotionally able to be part of this world, I think I could live with those physical limitations. But not everybody can. And so this is very personal. And it requires long years of recurrent conversation and communication with, not only your loved ones who will be the ones at that bedside making those calls, but also with your doctors.

GROSS: Do you have an advance directive?

ZITTER: I finally do. But it took me a long time to get it - to get it written. And I carried this yellow advanced directive - you know, state of California advanced directive form with me back and forth on so many trips, on so many airplane flights. Like, oh, my God, I'm going to do my advanced directive today. And it took me years because that section - you know, there are several things that are really quick and easy to fill out. Who's your surrogate? OK, I'll have my husband be my surrogate, you know? Do you want to be an organ donor? Yeah, I do.

But when it came down to that question about my instruction directive - the health care part of it - the - like, what exactly - what are my wishes? - I realized, like, I got to explain to you what these two check boxes mean. If I can't live in a quality with which - you know, to which I - and I started elaborating. And I was writing pages and pages and pages about what this meant. And then I finally realized, you know, just turn this thing in. And really, what this is going to be is conversation after conversation with my family, which we are now having more and more frequently. In fact, my kid just said to me - I don't know - few months ago, mom, can we ever have dinner without talking about death?

(LAUGHTER)

GROSS: So you just check the questions without writing essays attached to them?

ZITTER: Well, no. I actually did turn in my essay. But the truth - you mean, with the advanced directive? I turned - I turned in the many pages of extra stuff. But I'll be honest with you. What really is important is the conversations I'm leaving with my family members and the, you know, the - for example, OK, well, how do I feel about the Terri Schiavo case? And how would I feel in - you know, Aunt Mary, you know, and how she died. I mean, it's just really bringing this - these experiences into life and, you know, just continuing this ongoing conversation about who I am and what's important to me.

And, you know, I play this game with my son. We did this thing last weekend where we did this intergenerational dialogue about death and dying for one of the local hospices just to show us strategies for how you can actually sit and talk to your teenage kid. And I learned a bunch of stuff about my son I just did not know. I mean, he was so clear. He said, mom, if I cannot tell you if I want to be taken off of a breathing machine and I'm unlikely ever to be able to tell you, then I want to be taken off of a breathing machine. And that was really helpful for me.

GROSS: That strikes me as a really difficult conversation to have with a teenage son.

ZITTER: (Laughter) You know, once you start it, it's not as difficult as you think. What it was that was keeping me...

GROSS: How do you feel about asking your son to imagine his own death?

ZITTER: I feel good about asking him to imagine it because I used to feel - and I think on some subconscious level, I feel like so many of us do that, oh, jeez, you know, if we talk about it, maybe it'll be more likely to happen. Or, you know, if I talk about this with him, maybe it's going to make him feel like I don't love him. And the truth is it doesn't. It's about having somebody stand up and say, hey, this is what's important to me. This is what I care about. And it's about you saying back to them, hey, I love you. And I care about knowing that. That's really important information to me. Thank you.

You know, it feels like this taboo thing, like ew (ph). You know, I don't want to talk about that to my mother. That's going to make her think I'm looking for her money or what - who knows? - whatever a person's particular concern is. And in the end, I - you know, I've talked about this with more people than - you know, it's part of what I write about. So it's something that I really feel obligated to do. It's not like I like these conversations either. But every single time I've had them, they've turned out to be very helpful.

GROSS: So it's becoming more common now for critical care doctors to also be palliative care doctors. But when you started combining the two disciplines, that was considered pretty unusual. Would you explain what each position is and why some people see them as being in conflict?

ZITTER: Coming in as a palliative care doctor, there was this perception that what we were focusing on was stuff that was just, you know, fluffier and less important and, you know, emotions and communication and how people were feeling and even symptoms, none of which were really thought to be the essential meat of medicine. And that's why, especially in the early days when I would do palliative care consuls, I felt that we sort of had to be treading a little bit on eggshells at times. You know, I got fired from a couple of cases.

You know, one of the cases I write about is this case of a surgeon taking care of a guy who'd had multiple gunshot wounds to his stomach. And this patient was in the ICU. And he had been there for now going on - what? - six, seven months. And he was not only not getting better, but he was never going to get better because he had no gut left. He was, at this point, getting all of his calories through I.V. nutrition, which is really not a sustainable situation. And he was wasting away. He was a young man, and he was - really, there was just no future for him.

And I had been called in as a palliative care doctor to help with his - some of his pain. But I said, well, you know, does this guy who's got three young children understand that this is sort of a very limited prognosis, that we really don't have long-term ways to keep him fed and that he's - the real reason he's wasting away is because, you know, he's starving to death. And the surgeon said, look; I don't need you here taking hope away from my patient. And she essentially fired me from the case.

And so, you know, when you're a palliative care consultant and you've got people who are really focused on - I would almost call it hero medicine. I say it because that's how I sort of see it in the ICU. Yeah, I want to be doing this heroic stuff which I really care about. And I've seen it do such great things so many times in so many cases. And so you want to focus on that piece of it. And then, you have somebody coming around and saying, hey, wait a minute; maybe we should talk to your patient about the fact that we're not going to be able to do, you know, an 11th-hour save here. And people can bristle at that.

So it - there was, in the earlier days especially, conflict. I am lucky enough now to work in a hospital that really values palliative care. And as I said, most hospitals are starting to value palliative care as time goes on because the data really are irrefutable, you know, in showing its benefits to patients and to everyone else around the patient.

GROSS: Jessica Nutik Zitter, thank you so much for talking with us.

ZITTER: Oh, it was such a pleasure.

GROSS: Jessica Nutik Zitter is a critical care and palliative care doctor and author of the book "Extreme Measures." Transcript provided by NPR, Copyright NPR.

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