Dialogue with the Ethicist: Chris Feudtner MD, PhD

OPENING

The Dialogue includes: Chris Feudtner, the Senior Chaplain, the Ethics Program Director, nurse ethicist, and other members of the audience in attendance, including ethics consultants, ethicists from adult care institutions, physicians, nurses, and social workers. The Senior Chaplain begins the case presentation. 

Senior Chaplain: My thought was we’d present pieces so we could have dialogue around different aspects of the case before we return to the end of the story.

A number of years ago now, we had a family here with an only child who had been the result of a significant number of IVF treatments. The parents were in their mid-30s, middle class, and had a lot of resources behind them, and a lot of support. The child was diagnosed in utero with Hypoplastic Left Heart Syndrome (HLHS) and the family was essentially told:

“Standard of care is this surgery, and then this surgery, and then this surgery, and everything is going to be fine—“

That was the way they entered into their relationship with their first-born son. He had the first procedure, he had the second procedure, and after the second procedure, he was simply unable to come off of the ventilator. He would run low–grade fevers, and was just not able to tolerate extubation; he would need to be back on for support in 12–24 hours. The team felt it was really important at this point to give him a tracheostomy and get him out of the hospital, so he would be able to begin to be home, and experience time at home. 

The parents were adamantly opposed to a tracheostomy. They did not want him trached; they felt that was not what their faith supported, and it was not what they supported in terms of their core values. They talked frequently about how living on a ventilator with a trach was not what they wanted for him, and the team was unable to say with any certainty that he would ever be able to live without the trach. So, the family asked for a do-not-reintubate order, and that was the point at which the ethics consult was called.

So, that’s the start. What are the questions, the thoughts, what are the problems you see?

Chris Feudtner: What are people curious about? And you did a great job at relaying that case.

Audience question:  I’m curious about what in their faith—if he was allowed to have surgeries and hospitalizations—did the tracheostomy present a problem for, and was that a major point for them? Was that a key piece, or not a key piece?

Ethics Program Director: I met with this family and can explain what their thinking was. Actually, the family included the parents and the grandparents. Their thought was that this child was going through so much; we are ready to let him go. What they were really lobbying for was to allow the child to die, which if a tracheostomy were to be done, there really wouldn’t be any reason for. And so, in their belief system, it was ok to end the intervention and let nature take its course.

Senior Chaplain: Essentially—that’s true, but it was a little bit more complex. Their belief system was really about the fact that death was not the worst thing that could happen to someone; that God created us to be independent—in God’s image, and likeness—to walk, breathe on our own, and do the things we are motivated to do, and make those kinds of choices. 

They were very, very clear that they did not want him to die. But, if it was a choice between what they viewed as a natural death—because he couldn’t sustain his own breathing—and being reintubated, they did not want him reintubated. They wanted him to be at home, where he could die naturally—what they believed was a ‘natural’ death.

Audience question: Was the trach going to be transitional? Would they eventually be able to remove it and close it so he could breathe on his own?

Senior Chaplain: The team said they could not guarantee that. They felt he might need to be trached for the rest of his life.

Audience question: Can you give more details on the clinical picture? What were the trajectories with, and without, the trach? And what age was the child?

Senior Chaplain: He was 8 months old.

Nurse Ethicist: That was part of the issue. Dr. Cohen, who is not here today, and I were the consult team that did the first ethics consult. And it was interesting, because I stopped in Kathleen’s office to center myself, and she gave me one of her rocks, inscribed with the word, “courage.” I put it in my pocket because it was a really difficult case. There were a lot of really high emotions going in. For our consults, we invite whoever would like to come from the medical team. There must have been fifteen to twenty people in the room. I’ve never seen anything quite like it. 

There was a lot of triangulation going on; forming camps or factions within the group. Not helpful behaviors. But when the consult was first called, the prognosis given was pretty grim; he would be on a ventilator for up to a year, and then transition, but there was no clear feeling whether he would ever transition off. I think one of the challenges of the case was that fact changed over time. The medical team seemed to get much more confident in his prognosis, as far as being able to get him off of the vent sooner. That uncertainty was one of the things that made it very difficult. I think we so often go into these things, and when they come to ethics, I don’t know if the person calling the consult feels they need to “beef up” their side of the case; maybe the prognosis wasn’t quite so grim. But that was one of the challenges we had.

Question from audience: Was a time trial discussed to see, especially if there was all this uncertainty, to see how he did on the trach for a certain number of months and then reassess?

Senior Chaplain: The team did offer that as an option, but the parents refused. They simply refused a tracheostomy. They did not want it for fear that it would be ongoing, recognizing the fact that this is the second surgery for Hypoplastic Left Heart, which is supposed to be the ‘simple’ one, the ‘easy’ one. They were projecting ahead as well, to the third, very difficult surgery. If he’s having this much trouble now, what might it look like in a year, year-and-a-half when he has to have his third surgery, and do they really want to put him through all of that? He’d be spending his whole life in a hospital. That was one of the things they were struggling with as a family.

Ethics Program Director: This was a case that actually had two ethics consults. In the first ethics consult, there was support for the position of the parents, to allow for this to happen. But then, the child started to improve, and at some point in time, the improvement was quite remarkable. So, when the second ethics consult took place, it reversed the recommendation of the first one. Plus, there was quite a bit of disagreement. It’s one of the most debated cases in our ethics committee history. Usually we get to a consensus, but in this one, not really—there were different opinions in the end. And because of that, and this very unusual situation, we thought this would be a good case for some commentary, questioning, and so on.

Nurse Ethicist: There was a lot of distress—I don’t know if it was moral—but we were very distressed. 

Chris Feudtner: So one of the things that I find interesting is how tracheostomy—whether to trach or not to trach—has become such a big moment in the care trajectory. Everybody is nodding—why? It’s a fairly minor procedure, easily reversed. And yet, we’ve enshrined it as being one of the most nodal points in terms of whether we’re going to go left or right. I don’t know why that is; I think that part of it is that clinicians offer a time-limited trial, but the parents don’t trust that it will be, that this is going to go on forever, that we’ll have entered into a new level of support that will preclude withdrawal of ventilatory support, and they can’t stomach that. We see this in a variety of different ways; we see this come down as it has in this case, where it’s often right after the second stage. The second stage is where they get stuck, and they either get ill or they wind up having exactly this kind of scenario; less so than after stage three. 

We’ll talk about the trach, the promises of time-limited trials; a few other things might pop up here as well, including where we might want to start, which is bias in how cases are presented. So: 

”Ring, ring. Hi, Dr. Feudtner—”

I know if I’m hearing one side of the story. Even if you called me [looking at an audience member], I’m thinking, “What’s the other side of the story?”

I won’t say that, but I’ve been burned so many times by believing what people tell me. Its not that they’re creating falsehoods, its just that they give me all the evidence for their side of the case, or they have spun it to be much more dramatic and bad. 

So, at dinner last night we were talking about this. If I get a call, and it’s the NICU, and they say, 

“We have a case down here, its futile care—“ 

Ok–50/50 the baby is actually going to go home alive, and pretty well. “Futility,” is really one of my watchwords. But we’ve really only heard one side. 

Now depending on how we do the consult, we may not go in and talk to the family. It will depend. In this case, it was definitely required, but if I’m hearing something else going on, maybe I’m going to have to work with the team instead. So what I will do at the beginning is say, 

“Is it ok if I pressure test this a little bit? I’m going to be annoying, but I’m going to push you. Why does the baby need to be on the ventilator again? Is it the pressures that are required for ventilation, or is it an oxygenation problem that’s the heart?”

 Is it the heart or lungs—you don’t need to answer that about this case. But I become very pushy, because I need to understand this. And often what I get is that the medical team isn’t really sure. Now we talked a little bit about whether you have to know a ton of medicine to do this, and I don’t know if I know a ton, but I think I know enough to ask some questions, but asking why—three levels of why:

“Well, why is this?” 

“Why is that?” 

“Ok, so why?” 

Most often in the futility cases in the NICU, the answer is: 

“Well we don’t know why, but its bad…I can tell you its really bad. I’ve been doing this for 30 years, and it’s bad.” 

“Well, why is it bad?” 

“I don’t know, but it’s BAD.”

Ok, what that suggests to me is that there is a gap of uncertainty that is being filled with the adamancy of the position: 

“So why does the child need the trach?”

“Does the trach need to happen now?”

“If so, why?”

 And I’ll come back to this because I think we actually delay putting trachs in—probably—although I’m not a big fan of trachs. But why now, why is this coming up now, and what would it look like if we go the other way? Could the parents possibly be right? 

“Again, I’m sorry to be annoying, but if they’re saying that the trach is going to be forever, like when would it become too much?”

So, immediately I start with the team to play devil’s advocate. And I do it in order to not be thrown out of the room, like:

“I’m sorry, I’m going to push on this…”

I make it part of the meta-discussion about how I’m going to talk about the issue, how I’m going to conduct myself as the ethicist, to really expand our sense of knowledge about what’s going on. 

This talk right behind me, “Ethics as Conduct,” how should we behave, how should we govern ourselves, the rules of the road, and what do we know. For most ethics consults, I do a lot of work up front cleaning up what we think we know, but we don’t. We know one side, but not the other, or we think we know its really bad, but in fact we’re just anxious because we don’t know what it is, and its not behaving, its not getting any better, and therefore it’s really bad.

Well, it’s been really bad for eight months, so its probably not lethal—it may be lethal—but the kid’s lived with it that length of time. I would have pushed on this at the beginning. I would have particularly pushed on why, in a child that wasn’t being ventilated up to this point—did something really go wrong in the OR to break the kid’s lungs?—Which is usually not the case. Is the heart egregiously failing? No. Then this is probably a bump in the road. Now again, I say that I would never present it to the parents as, “this is something that is surmountable.” It may be a big bump—you don’t want to go across it at 50 miles per hour, or you’ll wreck the bottom of your car—but it is a surmountable problem. 

The second thing is that I don’t know a religious creed that says you’re not allowed to have a piece of plastic in your chest. I’m also picking up on the—again in the safety of this room; I would never do this in front of parents—the inconsistency of the position. So:

“I‘m made in the Lord’s image, but I can have my heart completely redone, but now I’m getting to the point where it has to stop.” 

There is something inconsistent, but it makes me think there may be something else that they were responding to, which may be they were willing to go down this road up to a point, but now, particularly the grandparents, are like: 

“This is getting crazier, and crazier, and crazier. You did all the IVF, you spent all that money, then the kid has that problem, and you’re doing the second operation, and now he has all these problems—where are you going to draw the line in the sand?”

They have decided: 

“This is the line in the sand.”

Which I get. But that’s different than immediately buying into it being a religious creed issue. How do we operate with integrity and tolerance, or respect, for different faiths? I think we are allowed to remain curious as to how faith dovetails with these other, very normal, psychological responses. We’re allowed to be curious, why now is creed, or doctrine, being brought in, when it was not being brought in earlier? The argument, or the response, may not be doctrinal; it may be that the psychology is what’s really driving things. So, we really need to understand where they might be coming from.

As soon as I heard IVF, I’m like ok—and again I’m going to say something—this is like a ‘number-two special,’ we see this all the time. And it’s in part the journey, and the sunk costs, and the mixed-up feelings that people have sort of muddled together of a deep desire to have a baby, but guilt, probably, about doing it:

“We can’t stop now, but we have to stop now. This is a disaster but we have to keep going…”

I’m getting tired even thinking about it. I’m going to walk into a room with probably a lot of that going on in there. What might be driving that? I’d be very curious if I were to talk to them:

“I hear that you hate the thought of a trach…”

And I’ll often do that. I’ll just jump to the clear, crystal extreme, like that: 

“You hate that idea. Can you help me understand why? I’m not going to try to talk you in or out of it—”

Unless I really do think I’m going to try to talk them into it, then I may not make that promise. I have to be clear as to what my intention is. If the baby was sicker, I might say, 

“I just need to hear your point of view so I can understand it and I can communicate it to other people. I can’t tell you at the end of the day whether I’m going to agree with it or not, but I definitely want to understand it.”

I would sit there and draw it out, more and more. I would also want to know:

“Who else in your family is giving you input? Are all of you on the same page, or are there differences?“

This could be really painful, particularly if the spouses are not aligned:

“We can’t betray each other, we can’t throw one another under the bus.” 

I’d be exploring all of that. Why have they gotten to this point? I’m writing an essay right now for the newsletter section of Hospice Palliative Medicine called, “The Pain Point.” I go into rooms and situations like this, and I’m trying to identify: What is the point of maximum pain that they’re feeling? Meaning this response is probably being driven by something that they’re very afraid of. It’s the mirror image of the adamancy, most of the time, borne out of a deep fear, anxiety, dread.

And it can all be justified; I’m not saying that that’s a bad thing. Lord forbid, if I had a terrible illness, I do not want to die in an ICU. I’m both afraid of it, and frankly, I’ll flip off anyone who wants to take me in there to die. I’d be angry about it. So, its not that the pain point is necessarily a psychological excuse, but it helps clarify where people are coming from, what they are most intensely involved in, and it often goes undetected, or known vaguely, but not precisely. There may be more than one pain point. But this family had pain points.

Ethics Program Director: Oh yes. The way I understood it is the experience of a diminished life for their child was something very, very painful.

Chris Feudtner: And I would go there with them on that. Now, before I go any further, I’m also a little pissed with the people who said, “no big deal.” When the hell did a Hypoplastic Left Heart become no big deal?

Senior Chaplain: The parents were angry about that.

Chris Feudtner: They have every right to be angry about it; it’s a bill of goods they were sold. But I think it would have been appropriate to say,

“You may be very surprised by what you may read to the contrary, about how well kids can do. But it is a slog to get there, and I can’t promise that outcome.”

A very close friend/colleague of mine and I talk about the titration of worry. In a typical ICU what you hear is:

“Everything’s good.”

“Everything’s great.”

“No problem.”

“We have to withdraw.”

Audience: [laughs]

Chris Feudtner: It gets a laugh, but its like depressingly, “no problem, no problem, time to withdraw.” So: one, people experience whiplash. They feel like all of the prior stuff was a falsehood, even if it wasn’t officially stated, there was posturing to that effect. And the pain point for the team, now, is I think:

“We know that we did this.”

And then we get sort of dysthymically confused and frustrated, that:

“We did this, but we don’t want to own it—“

And now, instead of absorbing the fact that we could do better, titrating worry—what we’re worried about, what we’re hoping for, what are realistic expectations—we don’t do that. Our dysthymia gets put on the parents, which is unfair. So, as much as I’m talking about the parents a lot, I want to make it clear that they’re doing something that I completely understand. They’re the novices in this, they’re not supposed to be the pros. We’re suppose to be the professionals who understand how you take people through a difficult, multistage process, foresee potential problems, tell them about them, and get them to realize that.

I’m still optimistic, although I don’t know this child. It will depend in part whether there’s been neurologic injury, but there could still be a fairly good life, maybe not as long as we would like. Although there are other conditions, heart conditions that are far worse, those are not the poster children for bad heart conditions; Hypoplastic Left Heart is the poster child. Let me expand on that.

How long do you think it is, in terms of fifteen–year survival? What percentage of kids with Hypoplastic Left Heart who were born from 2000, now it’s 2017, are still alive? Is it 50%, 70%, 90%? They have rates of survivorship that are better, on par, with ALL. This is what a cardiologist at CHOP pointed out to me; why do we force it, if a kid comes in with ALL, a seven-year-old, who doesn’t want treatment:

“No, no, no—we’re going to court.”

Comment from audience: That’s exactly what the cardiologist said to me, and I don’t know if it was this case, or a different case of Hypoplastic Left Heart when the parents were saying they didn’t want to do anything. And he said that if you had a kid with ALL, you would force them into treatment.

Chris Feudtner: I think there is a point where you start to notice that you’re treating similar issues in certain ways, very differently. And ALL is a lot of therapy, and a lot of long-term consequences, so it sort of bears scrutiny. Something about cutting people open versus pouring toxins in their veins—it’s not that dissimilar. But we respond differently and I think it is interesting.

The key point, and we’ll segue into VADs in a moment, is there are certain technologies and certain interventions that we have to watch. When I wrote an accompanying editorial about the “Ethics at the Edge of Therapeutic Evolution,” I had to remain ultra–current; I couldn’t use my knowledge of HLHS in the Norwood Era when I first started at CHOP. It was better than 20%, but it was still abysmal. It’s not like that anymore. How many of you would like an implanted VAD?

Audience: [No response]

Chris Feudtner: Not one. The technology on VADs, talk about being ultra-current—you know this better than we do—

[Gesturing to an ethicist from an adult hospital]

In the adult world, I could have a VAD. We had a member of our staff who’s had a VAD for 5 years, walking around going to work. Ok, I see some of you nodding. We just did a whole ethics committee meeting with our Peds group, because we still think of the big, Berlin heart—the one you’ve got to have a pushcart to move around because your heart is externalized. Now, these are all internalized with a driver to the power source. 

There is a general problem of making sure our ethics intuitions are actually current. And sometimes the providers’ intuitions of:

“We have to do this—” 

Fail to articulate that things have gotten much better. Sometimes that is a strategy to have; maybe there is a technological advance, or new data, and I’m five or ten years out-of-date in my mind. So, as I’m pressure testing, I might say,

“Well, tell me what the survival statistics are, because maybe I’m outmoded.”

But there are people who don’t survive, and to ever make the claim, 

“Everything is going to be fine!” 

Is to try to avoid having to walk that walk, avoiding having to be chronically worried: 

“ ‘Cause I don’t want to handle it, and I don’t want to make the parents handle it—“ 

Well, it’s the reality if they have the problem. Plus, the parents will end up being worried no matter what people say. They’ll just feel more isolated.

I don’t know what I would have done, because there’s always more to the story. But I have become more inclined to push for tracheostomies, for the following reasons. One, we’ve had kids languish in our ICU for months, intubated, going nowhere. So, if the parents said we want to do a compassionate extubation tomorrow, I would have been ok—I might have thought of doing that. But if their request is that they want him to continue to be intubated, and want a do not reintubate order, what they’re also telling me is that they don’t want to have to make the decision; they want an accident to occur. I would have immediately started to think:

 “I’m not sure we want it to play out that way…” 

Now, I would work very, very hard to not have to go to court and get a court order to put a trach in. But I would have started to try to position a deal with the parents to have the trach put in. 

Duchenne; how many of you have had the problem of a young boy who does not want to get trached, who is sixteen to seventeen years old, and is brought to the emergency department with respiratory failure, and says, 

“Save me!” 

Does that make your head explode? Or are you calmer about that now?

[Looks to an audience member]

Answer from audience: I’m calmer about it now, but it used to bother me a lot.

Chris Feudtner: This is again, one of these interesting things about the trach. I think it’s a natural notion, the non-intervention notion—the irreversibility of it as a life course. Trachs have their hazards, so I do think that people have to be told that they plug, they can come out—placing a tracheotomy tube is something we do that can be helpful, but it really presents a new vulnerability.

Comment from audience: Can I add a point there? I think it also has something to do with identity, that there’s something about loosing the voice, which is so much a part of a person’s identity, and that people don’t react that way to g-tubes usually.

Chris Feudtner: I’ve had parents who thought a g-tube was a devastating thing. I think it is the same. But I do think the visibility of it plays a part. Head and neck cancer is treated differently, in terms of stigma, than things that are more disfiguring lower down; it’s on display. With passing air valves, sometimes the kids can continue to talk. It will depend a little bit on the reason they need the respiratory support. I’m not a trach expert, but we have kids who can cap, or they can talk with a passing air valve. And I would be hopeful that this kid eventually could get put back together again. So, I’m not sure. I’m not king of the world; I can go in and try the best I can to make some kind of mediated deal. 

But it may be those parents were walking a path, not fully aware of exactly how it would play out. I don’t know what triggered their reactivity. There may be very conscientious objection to this. But I can tell you that if we hadn’t gone on to the second stage, I’ve learned to hit the pause button here. Because this can be a very meta-stable, and not really best for the kid, place to land: chronically intubated, no trach; you can’t move forward, you can’t move back, waiting for an accident to happen. We have this with kids that are marooned on ECMO occasionally, where:

 “We’re just going to wait for the circuit to fail.”

Really? That’s probably not the best solution to this problem. It’s going to happen at the wrong time. If they’re headed towards compassionate extubation, we can do a lot to support the child, to make the child as comfortable as possible and support the family in being there. If we’re waiting for an accidental extubation with no reintubation, the kid may be alone; there’ll be panic in the room—that’s just not the way to handle that.

Ethics Program Director: Kathleen, perhaps you can give us the denouement, what happened?

Senior Chaplain: The parents were really arguing for a compassionate extubation. They did not want reintubation, and the team is saying:

“He’s never been on ECMO, he’s cognitively fine as far as they know, we would have to reintubate.”

And the parents are saying,

“No, we don’t want to do that.”

And so, it got very ugly before it got better. I was not the ethics consultant, but I was the chaplain for the family, and so I spent a lot of time with them. And I had members of the care team coming by my office to say:

“What can you do to change their mind? What can you do to change their mind? Can we get them to give up custody? Maybe they’ll adopt him out?”

When the fact was that they love him desperately; it’s because they love him desperately that they were insisting.

Chris Feudtner: I have an idea: 

“You can go and get a job somewhere else—that’s equally likely to happen. That way you won’t have to deal with it.”

Senior Chaplain: Yes.

Chris Feudtner: And they’d be like:

“No, I can’t do that!”

“Well you’re proposing something that’s about as likely to happen.”

Senior Chaplain: So it was—it got very, very ugly for quite a while. One of the reasons I thought about bringing it here was what I perceived as a tremendous level of courage on the part of the parents to say:

“You have to hear us. You have to listen to us about what our core values are, about who we are as a family, about what we want for our child. Listen to us.”

It wasn’t necessarily about agreeing with them, it was:

 “Please listen to us, and acknowledge that we are not bad people, or bad parents. We are doing the best we can.”

Chris Feudtner: Ok. So, can I take that? Two things here are key. One, this was never about the piece of plastic, which is why I was skeptical at the beginning; it’s usually not about the trach. The trach has become a Schelling point, a thing that is a social norm that we all gravitate toward in collective thought. Like we all think it’s about the trach, but it’s not actually about the trach. There’s a backstory here that they either feel that they failed to advocate or that they’ve been bullied into things, and they have finally decided that they’re going to stand up against this. And they’ve said, 

“This is the Maginot Line, we are not letting anybody cross it.” 

That’s different; then I’m not going to talk about the trach. I’m going to talk about: 

“How did we get here?” And what are realistic expectations? You’ve had a lot of people who have probably fed you a lot of very biased information. I apologize for that. I promise you that I’m going to try to be as straightforward as I can, I’ll tell you exactly what I’m thinking, I’ll tell you what I’m worried about, what I’m not worried about. But I need to hear from you.”

And, like in certain palliative care, you drain the swamp—you let them give you all of the stuff that has bothered them. I have sat for an hour like that, listening to people complain. And then you get to the bottom and you have firm ground to start to work with. 

Now there will be an issue that I want to go back to, because probably what they’re also worrying about is not just:

“You guys blew it, and I can’t work with you anymore and we’re drawing the line.” 

But also, this feels like:

“And we’re worried, where does this go? And will we have control?”

It’s why people want the Hemlock Society to exist. I want to know—and I’d be this way, I’d want to have that vial there—not that I’m going to take it—but I want to know that if it gets bad I’ve got an exit strategy. And nobody has given them an exit strategy.

Comment from audience: How are they going to prevent getting to a place that’s worse than death…

Chris Feudtner: Right. He’s trached, and now he has a stroke:

“We have to keep going.”

I would talk about how we can do compassionate extubations from a trach. What would that look like? What are you hoping for in terms of his capacity? Ok, he’s eight months—I’m trying to visualize him at five years. Or, maybe even a year from now: 

“What do you see?”

“What do you hope for at the most, and—I’m going to do this if that’s ok—lets back up, and imagine it’s worse than that; at what point do you think it’s been a terrible mistake? So, I can sort of understand what you’re hoping for, and when this gets so bad that we would need to stop.” 

And they may say, 

“We’re already there.” 

But my suspicion, having been down this path many times, is that they’re not there yet, but they’re just afraid that:

“If I take one more step—give an inch, take a yard–they’re going to push me and I’m going to be completely stuck with a kid whose terribly suffering and I’ve been shackled.”

Maybe the kid’s even in custody: 

“Shit, can they really do that to me? So, I’ve got to protect him now. Now is the time to take proactive action.”

Senior Chaplain: Any other questions, or do you want the end? So, grace be to our cardiologist and intensivists, who really did sit down finally with these parents and heard the whole story, and really listened to it. They moved him—I don’t know what the reason was—moved him into an isolation room, extubated him, heard mom and dad say,

 “We love him desperately, we would love for him to be able to live. This is what we want for him.”

They could articulate all those things you were just talking about. The team extubated him, and managed to keep him extubated without a trach, until he could go home. He went home without a ventilator, without a trach, only on what cardiology medicines he needed. He was significantly delayed because of his time in the hospital, but not cognitively impaired. At that particular point, mom and dad transferred his care to CHOP. About three years later, they were back here for a follow-up appointment. At that point, they had chosen not to go forward with the third surgery, but it was still on the table for discussion; they said,

“We’ll see what happens. We’re just going to have to take every day as it comes, and kind of explore his quality of life; he’s beginning to become verbal, and he has to have some say in all of this. Maybe not at three, but we want him to be a participant in his own life.”

I lost track of them after that; they’ve left the state. But it was the best of all possible endings to that story. A very, long, arduous, and difficult process with a lot of dissention, even in our committee, about whether or not it was ok to allow compassionate extubation for a child that would probably do alright, maybe, with a trach. But was it also all right to allow a natural death process? I felt very strongly, given what I knew of the parents and the family, that they were not hastily making this decision. 

Chris Feudtner: Had they attempted extubation prior to the compassionate extubation?

Senior Chaplain: They had tried some extubations, with having to reintubate him within a space of 24-hours. It was an oxygenation problem, with a low-grade fever he was never able to get rid of. I don’t have all the medical details about how they finally were able to keep him extubated, but it took about another six weeks to finally get him stable enough to go home. But I think we learned a lot from that. The first reaction in some of the conversations with the team was saying, 

“We just need to get him trached and out of here. It’s better for him to be out of here.” 

Well, “trached and out of here,” reflected not communicating to the family very well:

“That might be easy for you, but that’s not necessarily easy for us. And ‘out of here’? Well, we’re not sure that ‘out of here,’ is what we want for him.”

And I think finally, with the Attending and family getting together, they had that conversation; what’s the best, what’s the worst, how do we get from here to here, and what does this middle ground look like. They did it.

Chris Feudtner: So what’s interesting, again, as the facts become clearer, is that the compassionate extubation sounds like it was a compassionate trial of extubation. And what I mean by that—it’s not the right term—but it wasn’t with sedation, the expectation was that he would survive—

Senior Chaplain: Right.

Chris Feudtner: And that he would have a slow dwindle, potentially needing to go back on, which immediately, again, I would have pressure tested:

“What if we just accept O₂ sats in the 80s. Now it’s subpar, but do we accept that?”

Again, the way it was framed, how did he fail the prior extubation attempts—is it that they nicked the diaphragm? He’s diaphragmatic, the diaphragm is not working well, and he’s got all this medical stuff—

Senior Chaplain: They did nick the diaphragm.

Chris Feudtner: And that’s why, with the low-grade fevers he’s got, problems with a little bit of consolidation at the bases, and V/Q mismatch etcetera—but  not necessarily going to get worse quickly—it is what it is, and he’ll likely ride with a certain V/Q mismatch for a spell: we could provide him with some supplemental oxygen to help him get over that, or we could just tolerate it. The part that makes me the most concerned is whether his non-progression to the Glenn, to the Fontan, rather, whether that’s actually helping him or not, and whether that’s an anxiety-based decision.

Senior Chaplain: Right.

Chris Feudtner: I would have loved to talk to that family about whether their anxiety is holding them back or their residual anger. Yea, being stuck with just the Glenn…He’s going to have a tough road ahead.

Senior Chaplain: And that was my last conversation with the family. They said they were moving somewhere else. I said,

 “Don’t base your decision on the experiences you’ve had up to now. Talk about it with somebody who knows what they’re doing, don’t just let it go.”

Chris Feudtner: It could also be that there were technical reasons that his was a difficult chest to operate in, and they realized in the second stage that the third stage was going to be much more difficult. It might have been prudent to stop—otherwise that’s a recipe for disaster. But if that’s not the case—again we talk about the development of technology as being path dependent; why do we have a QWERTY keyboard? It’s just how things evolved, and you then can’t get out of that path, the cost is too high. 

We all have path dependency in how we respond to our medical experiences, based on where we’ve been. In many ways, this story really boils down to that; to understanding where people have been is fundamental to understanding where they are, and where they want to go next, and what they’re afraid of.

Senior Chaplain: The sideways, and the backwards story.

Nurse Ethicist: You know, what I often worry about and struggle with, and did in this case as well, is a lot of times when we’re looking at what the ethically permissible options in medicine are, we put a great deal of emphasis on that prognosis, those numbers—and I struggle balancing that with personal values, and these quality-of-life issues. It rose in this case as well. We can say they’re going to live so long, but what is that going to look like? You know? How do you weigh—when you have so much uncertainty—how do you weight such value differences? Perhaps what we have to offer, what we feel is acceptable in treatment and not ‘extraordinary’ care, how do we weigh that with a situation like this; the family’s values appear to be much different than what we think is acceptable in medicine?

Chris Feudtner: I think again, I may say some things that disappoint some of you. We have to understand that parents are entering into a high-pressure situation; we know there are a couple of things about human cognition, in general, that have to be taken into account. We’ll have a hard time actually hearing probabilistic statements. It will tend to go zero or a hundred, all or none. It will be very hard to handle the 50/50 odds, or worse, even the 80/20 odds. When people are under stress, they very quickly will not be able to handle that. 

As a consequence, people tend to have sort of reactive ways of handling the situation; they can catastrophize. When I hear people give me the quality-of-life spiel, what I’m keeping my eye out for is whether they are giving me what evidence suggests is realistically balanced outcome, or are they focusing on one end of the spectrum or the other. “Everything is going to be fine,” makes me as worried as, “This is a total disaster.” And I have to temper both of those. 

I view myself as a counterweight to the condition of making decisions under stress. I’m not necessarily right, but I’m looking where people are going and I’m trying to provide a counterweight. If they’re way too optimistic: 

“Everything is going to be fine, everything is going to be fine—“ 

“Well, the oncologist told you the cancer can’t be cured, so…”

I’ve got to be a counterweight and bring them back towards a more grim reality, but I also have to do that in the other direction. We had a child that was diagnosed with septo-optic dysplasia, you know, a little set of midline defects that can go from fairly mild to fairly profound. The baby was already suckling, an MRI showed signs of septo-optic dysplasia, but the sella was intact, so it doesn’t look like the pituitary has been eradicated. I can’t remember all the details, but it looked like it was going to be on the milder phenotype. The parents typed in “septo-optic dysplasia,” into the computer and said,

“We don’t want anything done. No feeding, nothing.”

Now the baby was already feeding, so it was a moot point by then; you’re not allowed to not feed a baby, rule one. We also have issues in the state of Pennsylvania about tube feeding, but I don’t want to get caught up in that. They were catastrophizing. They had three other kids, and, in fact, the father at one point said,

“I have to protect the three of them…” 

Talking about the children, and the family. If there’s any value in the Best Interests Standard, it’s that I have to hear that—but they’re not my patients; I cannot get caught up in this drama. I actually don’t believe in family-centered care, I believe in patient-centered care with family engagement. That baby is my patient, and I want to work with the family; I’m not arrogant about what’s best for this baby, but the baby is my patient. I’m worried about the siblings, but again, I think it’s catastrophizing to believe having a sibling who is handicapped will be a disaster for the others. I say this as a brother who had a sister with Downs Syndrome—one of the great blessings of my life is to have Beth in it. So, I’m immediately picking up that this guy is catastrophizing. 

This is a known problem, and I’ve seen this with both males and females. I need to be a counterweight, because what will happen is when people start to lean entirely on the prognosis, and ignore quality of life:

“No, the survival statistics say everything will be fine—“

Well, surviving, but with a lot of impairment. But it’s the same at the other end, where it’s all about quality of life and there’s nothing about what the range of options are. So all I would say is be on guard for both of those scenarios, and think of our job as helping people center between those. So, I change like a chameleon in my role, depending on what I’m picking up regarding the cognitive tendencies at work. What I don’t do, and is all too common, is lean in and doubling down on the quality-of-life issue. I have seen that not be helpful. 

Our job as professionals is to hear, and definitely acknowledge what’s going on, but not necessarily become caught up in an advocacy position that isn’t balanced. We owe it to people to be able to say, as best we can,

“Here is a balanced understanding of what is going on. Here is the range of options.”

That’s what I think I owe people. I can definitely emote and relate to their concerns about suffering, but I can also see the smile. I walk into many rooms where people are saying,

“The baby is suffering!”

No:

“The baby is not doing anything.”

Audience: [laughs]

Chris Feudtner: I’ve heard people say, after determinations of brain death that the baby is suffering. If there is any good news there, it’s that the baby is not suffering; the person can’t suffer anymore. There is this magnetic pull about the ‘quality-of-life,’ and all of that, but I pick up,

“Ok, I’m being sucked into that angst; I fear it, I feel it, I’m willing to empathize with it, but I can’t be sucked into it.”

I don’t know if that helps, but we have to try to keep a balanced perspective.

Ethics Program Director: And in support of your positions, there are studies of adolescents with very serious chronic illnesses, prematurely born babies, etcetera, where they asked about quality of life to the impaired adolescent and to the parents, and asked nurses and doctors about their perceptions of the patient’s quality of life. The nurses and doctors have very similar scores that are quite low. The kids themselves and their parents, but especially the kids, have a pretty deep appreciation that their quality of life is alright.

Chris Feudtner: In fact, the European studies, of which they have done many, the kid’s reported quality of life is higher than the parent’s.

Ethics Program Director: Yes.

Senior Chaplain: Yes.

Chris Feudtner: Again, you do have some of the spina bifida patients who really hate aspects of their disability, but as a general rule, one of my mantras is, “I don’t do drama,” and my team will be like:

“Oh please! It’s just so terrible!”

Audience: [laughs]

Chris Feudtner: I can’t get sucked into it. I can hear it; I can hear the pain, the prognostic issues probabilistically, but I can’t get sucked into it. I can’t over-identify with it, because I’m going to have to come back to the patient. I can’t get caught up in:

“The mom is in prison, can only visit on every other Tuesday, she’s a terrible drug addict, and the baby is drug-exposed…”

Chris Feudtner: Cause next thing you know, that drama has affected the way people are looking at the baby, who is actually better than billed.

One of the things this also raised is what do you do when the committee is split. Drive towards consensus like we prize it. And we often, like your committee, achieve it, although I always wonder if there are one or two people in the room who are like:

“Am I the only one who doesn’t think that?”

And is not quite willing to say,

“I’m not comfortable with this.”

What I think we probably have is aggregations of agreement that go from being strongly agreeing, to willing to go along with it. What you’ve described in this case is really bimodal, people who agreed, and people who disagreed because the choice was so stark:

“We’re either going to remove that breathing tube, or we’re not.”

I don’t know what the right answer is.

Audience Member: One thing we’re working on is putting together a regional committee composed of other ethics programs, between basically Baltimore and Northern Virginia, which would meet quarterly to discuss cases like this.

Chris Feudtner: Right—down in Florida they have a similar thing, a multi-hospital committee. I think that can be helpful to make sure you calibrated, to bring your tougher cases. But lets say even there it’s 50/50; does that tell us something about the ethics, or does it tell us—we were talking last night, about how so many of our consults are communication that just needs to be cleaned up—that there are occasionally cases like:

“Wow—that is a very big trade-off.”

No way to get around it. I was trying in my deal making; I’m always trying to get around the trade-off. The easiest way to solve a difficult problem is to avoid it. 

Audience: [laughs]

Chris Feudtner: Make it into some other problem, and let that be the issue you can solve. But this remained a raw trade-off.

“If it’s 50/50, should we not proceed?”

It’s an interesting issue. Is there moral insight to realize:

“Ok, this is a judgment call.”

I’ve been very grateful about our committee being willing to have dissent, and just let it rest, because it captures something real about the situation, and so we don’t always press for consensus. At some places, they vote, but I don’t think that is a good idea.

So, we’ll come back to what my view of this is, but kudos for the mindfulness, for not trying to make something that’s not really there.

Audience Member: Could you talk a little bit more about this ICU attending who heard the parents, maybe was willing to settle for a lower oxygenation level, but really did something that was different than the ICU standard of care, which is to really demand a perfect extubation, and reintubate if the baby started to fail, but took a middle medical road, and maybe an ethical middle road—

Chris Feudtner: Right. So, what he did is interesting. He did a deal. He probably did it with his colleagues:

“We’re going to tolerate lower oxygen sats. We’re going to alter the definition of what would trigger reintubation.”

We talk about thinking about your objectives and the options. And what I often talk about is that there are two options people have in mind, ‘do,’ or ‘don’t do,’ and I’m always trying to sneak another option in between. Always. The best solution to a tricky problem is to avoid it. So what he did, probably, is he realized it’s not even what we’re talking about; his isn’t a compassionate extubation where I’m going to take the breathing tube out, the patient is going to be sedated, and die. 

“This is a trial of extubation that we’re not going to let fail; and I bet you we can get this kid to go a long time, limping along. We’re going to have to just suffer the fact that this is not ‘optimal’ care, and we all live with that.”

And probably his colleagues are:

[Makes a grumbling sound]

“I can live with it.”

They were grumpy, but they could live with it.

Audience Member: The conversation about guidelines is a little bit like this. So when do you accept as a clinician something that is not the highest standard of care?

Chris Feudtner: This is where, if we were involved, I’d be writing an ethics note that stated:

“We have met with the team and the family, and we vary from post extubation guidelines. I give a ‘blessing’ on this variation.”

And increasingly, were seeing this as a bigger and bigger issue of cover your ass, and also with nursing staff:

“Did you sign off that the sat was 82 and not immediately hit the code button?”

In a system that is becoming tighter, which is all for the good, I think guidelines are great—until they’re not. Your greatest strengths become your Achilles heel. As we get tighter about managing quality, we need to be able to mindfully introduce variance. So what they were doing here is they were saying,

“We think he can fly at this height—not hitting the trees—but he’s not going to be that far above them. But he can probably go a long time.”

 What I suspect this person did is that basically he negotiated a deal.

Ethics Program Director: And he didn’t do it on his own, because that was the second consult, where the proposal was:

“Well, let’s do that, but reintubate if things go badly.”

Chris Feudtner: He may have needed, and I’ve done this where I’m like:

“I have to hope I’m really good at this.”

And I would have said to the parents,

“I’m going to work my tail off to ensure that reintubation is not required.”

Ethics Program Director: Yes.

Audience Member: They weren’t saying they were taking the palliative approach, but the palliative literature is full of people who take them off of optimal therapies, and they do ok, for a while. It’s kind of listening to both sides, I’m not sure what you’d call it.

Chris Feudtner: Yes. I think a lot about complex care, and this is more of what I think of in my complex care hat. In fragile systems, one of the things you don’t want to do is be a bull in a china shop. You want to make small maneuvers and let, almost trust, the stability of the system to recalibrate. I think this is not necessarily palliative, but it’s not afraid of being palliative. 

Audience Member: Right.

Chris Feudtner: It may have given him the longest life we could have hoped for:

“We’re not putting him through the stage three; we’re not putting him through another operation. He’s not going to get a plug; he doesn’t have a trach in.” 

So, I have coached families, and then have guided them through:

“Let’s just see if we can stay at 1000 feet above the ground—we’re not trying to fly high—but let’s see if we can go across the whole goddamn country like that. And lets keep our fingers crossed.”

We can go a long time; there’s not a rule that you have to be up high to go a long time. But let’s get back to this issue of consensus. What this tells me is there is, amongst very informed, educated people, ethical uncertainty. So with apologies to everybody, we’re handing this back to the parents. Because they are the ones, who, in this grey zone, we’re going to empower to make that judgment call. I’m being a little bit cavalier here, but that’s the direction we should go. This tells us this is a ‘grey-zone’ decision.

Audience Member: And I appreciate what you just said because I keep thinking about your talk about courage. And it seems to me that in the ultimate decision about this, the parents have the right to make this decision, morally and ethically.

And there is an imbalance in the courage required. There is a tremendous courage for the doctors to, in this case, take the risk to alter the procedures, hoping he will do all right with this extubation. But, there is, to my mind so much more courage required of parents who will be living this 24-hours a day for the next ten years, whatever decision they make. Whereas those of us who are in the medical field—I’m a social worker—it’s a decision for the day, it’s a decision while we’re meeting with the committee about what to do in the next hour. But for the parents, there’s a real imbalance in the courage required to live with whatever decision is reached.

Chris Feudtner: But I will throw in a bit of caution here, cause occasionally when I have pushed, particularly with the non-feeding of newborns, and then they have done well, or died of another reason, where parents say,

“Thank you, at least I won’t have to wonder whether I have starved my baby.”

When we go into the realm of what parents decide, I don’t know. All I can try to do with the best integrity try to offer balanced, perspective, and advice; people can beat themselves up over anything—what mostly what I’m looking at is do they feel that they’ve done a good job as a parent? And if they feel they’ve been the best parent, on their own terms, if they can feel that in the face of this terrible challenge:

“I did what I needed to do.”

Then I’m more in the zone you’re going in. They will be able to live with what they did, because they felt that it was the right thing to do. Often in these catastrophes, they’re spinning, and they don’t know what the right thing to do is. That’s when I’m slowing things down, and maybe I need to be a counterweight.

Audience Member: With the issue of ethical uncertainty, part of what I want to know is, what is the nature of the uncertainty. What is the nature of the moral disagreement? Do we have folks who are in disagreement as to the range of ethically permissible options, or is it what’s within the range of ethically preferable options? Because I think those are different kinds of disagreements. If you’re talking about,

“Well, this is ethically preferable—“

“No, this is ethically preferable…”

But we are all in consensus that both options could be ethically permissible, in that they’re not impermissible, then that’s a different kind of debate than if some people are thinking,

“This is ethically impermissible, to withhold LSTs because of X, Y, Z.” 

I think it makes a difference with the moral distress and also when it comes to how you’re going to make the recommendation. When you have divided ethicists, or a divided ethics committee, then part of the challenge is do we refrain from making a recommendation or do we lay out the ethically permissible options and let the medical team have at it, which would mean we’re not functioning like normal clinical consultants. Is that the sort of thing we want to do or what moral language do we use in all of this.

Part of my concern is that if the default—and I understand the reasons you just said for giving the decision back to the parents—but my concern is that if you put that in a chart note, that sets up a default such that when there’s moral disagreement, we’re ultimately just going to put it back on the surrogates, when data shows that surrogates in ICU’s experience post-traumatic stress, regardless of what decisions they end up making. They experience guilt for years—a lot of them. I’m not saying they shouldn’t be making decisions, but it’s part of the whole picture I think. If you say that ultimately the parents should make this decision, what kind of precedent does that make for subsequent clinical decisions for the child, and does that lend itself to premature closure for the team as well? The idea that this ethical messiness has been tied up with a bow and we’re just going to empower the surrogates, and so we have a clean resolution that doesn’t require further ethical cleanup, if that makes sense?

Chris Feudtner: There were a couple of different points you touched on. One, there is great ethical certainty if we’re 50/50, fabulous certainty about this being a hard issue. This has not been under-thought. If there had been consensus there would also be certainty about both we know what to do, and we have agreement. But when we have really hashed it all the way out and we’re still in disagreement, there is certainty that this is indeed a judgment call or a tough issue. Now I think the response to that could be either:

“That’s interesting; this is a true ethical dilemma. Oye, such is life—“

Audience: [Laughs]

Chris Feudtner: Or:

“We’re still uncertain, because I don’t know which way to go.”

Chris Feudtner: What I’m pointing out is that the word ‘uncertainty’ could be used to describe different states. We could be, we don’t know what to do—I’m going to present a case:

“It’s about a boy. What should we do?”

Well, I don’t know what you’re talking about; you haven’t given me enough details. I don’t know the information. I don’t even know what the intervention is. That would be ‘uncertainty’ because we don’t have any intuition—we don’t even know what you’re talking about—let alone what we should do. That’s what we typically use the word ‘uncertainty’ for. After a very mature, thoughtful discussion, we’ve come to the point where we’re at a 50/50, I know that this is a really tough trade-off, and I’m certain about that. 

Now if you’re action-oriented and you need to know whether to go left or right, that doesn’t count as ‘certainty’ because you haven’t told me what to do yet. But to me, and this is the insight; this is a form of analytic certainty. If I give you a coin, what’s the probability that if I flip it, that it will land heads? 

“Well, it’s uncertain.”

 Well, actually it’s very certain; it’s a 0.5% chance—I just can’t tell you whether it will be heads or tails. It’s truly a balanced coin. So, think a little bit about what we really mean when we say there’s ‘uncertainty.’ What you did say, though, is that we’re still in a state of disagreement. 

You talked about ‘permissible’ about ‘preferable.’ There are definitely things that are impermissible; if its flagrantly illegal, we can’t euthanize people, but I’m very reluctant to start letting things become permissible ethically or impermissible, because it’s often used as a power play. So the people in this:

“It’s impermissible to do a compassionate extubation.” 

And lets make this case like the boy has seizures, etcetera. A lot of palliative care has been pushing back on:

“We’re not allowed to do this; we can’t do that, it’s impermissible—“

I tend to take it more like what we’re talking about when we talk about permissible with a little ‘p.’ It’s just not something that we would let go on, and its likely to be a case that would it would be a variant of that. I have to admit that I try not to talk about what’s permissible and impermissible, unless it’s egregious, and we would not do that. I use it very sparingly. Instead, I use:

“What are the arguments for and against?”

The last point I hear you talking about was that if we give it back to the parents—the parents have already said that they want to extubate. They’re not sitting on the horns of a dilemma. I would not inflict that kind of decision on them, like:

“Dude, I’m just a used car salesman. You either take the Ford or the Toyota. Your choice.”

I don’t believe in shared decision-making, or decision-making support, if you’re truly struggling. But if you say,

“I want the Ford.”

“Nah, I want you to buy the Toyota.”

“I want the Ford.”

And then I have everyone:

“Which one should he buy?”

“I don’t know, 50/50”

Then I’ll say,

“You’re allowed to have the Ford.”

That’s different than abandonment in the face of decision-making. They had already pushed their stack. I don’t think this is the problem, that I do agree with you entirely about, where it’s like:

“Here’s what we can do for you…”

The Chinese menu:

“Do you want intubation, intubation plus or minus a trach, an inflatable cuff—we also have on offer, to do it with or without vecuronium—“

Like crazy, hyper stuff—what kind of resuscitation do you want—that’s too far afield. Most people in the literature say they want support. They want to be heard, and they want to feel like they participated in the decision. Clearly, these parents in this situation felt like:

“Ok, I’ve been heard, I participated in this, and this clinician is going in this with us.”

So I think this was, frankly, very, very good shared decision-making—again, not knowing the details. Those are some of the thoughts I would have in response to what you’re describing. 

Also, I don’t worry too much about precedent. I do think about it, but again, if I’m using the Best Interests Standard, I’m taking care of this patient right now; I’m not taking care of the next one who’s likely to come down the pike. And the slippery slope argument, which is sort of what you’re making, is an interesting argument because it only actually functions where:

“The right thing to would be to give you this medicine, but I’m worried about the next patient. If I were to give it to you when it would be wrong for him, that would be inconsistent. So I’m not going to give it to you because I’m worried about the next one­–which means that I’m not taking the best care of you that I can.”

The slippery slope argument is not a Best Interests Standard. The Best Interests Standard is that I look at you and do the right thing for you. Now, we’re not opening Pandora’s box here; this was a very particular case, which very likely will not apply to the next case that just randomly shows up. 

END

The authors have disclosed no conflicts of interest.

This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License.

Correspondence

Ethicscope Editorial Group
Executive Editor, Pediatric Ethicscope
Clinical Ethics Coordinator
Children’s National Health System
Washington, DC 20010
[email protected]