So when the pandemic struck cities like Seattle, hospitals mounted triage teams to start thinking about how they might provide care in the event of a crisis, looking to such organizations as the Institute of Medicine for guidance. While hospitals never declared an official crisis or activated their triage teams this spring to introduce explicit rationing and crisis care guidance, new research from University of Washington School of Medicine clinicians shows that some could have.
Through interviews with 61 clinicians across the U.S. between April 9 and May 26, researchers asked about how hospitals planned for a crisis, how that planning bore out in practice and what further complications were there to providing the best possible care in the pandemic. The team discovered that in the murky period of pandemic resource scarcity that didn’t officially qualify as a “crisis,” doctors they were already basically rationing and doing so without clear bioethical guidance — all of which created considerable emotional and ethical stress in clinicians that also impacted patient care.
We sat down with Dr. Kate Butler, corresponding author of the study and an acting instructor at the University of Washington School of Medicine’s division of nephrology, to talk about how the way we conceive of crises complicates attending to them, and what doctors need to better support each other and their patients in pandemic scenarios.
This interview has been edited for length and clarity.
What prompted you to start looking into medical decision-making during the pandemic?
I have a background in bioethics, so I've always been interested in conflicting values in medicine and, in particular, issues around resource limitation. I think that this happens in real life settings all the time and it's not acknowledged, so it's difficult to address. My work before this had been in looking at the transplant evaluation [process] as an example of a situation where we really do have to allocate resources. I never expected my work to become so eerily relevant. So that's kind of what prompted this. We have a lot of theory that’s never been tested. And so, this [pandemic] is the test.
Going into the pandemic, the medical community had some theoretical crisis care frameworks to refer to, like the Institute of Medicine’s recommendations. Were they appropriate this time?
I think that the Institute of Medicine approach is very appropriate for very acute crises, like a natural disaster that causes a huge influx of casualties. It would be very apparent when we shifted from what they call “contingency capacity” to “crisis capacity”: There would be 60 people needing treatment and five ventilators.
That is one kind of emergency. I think the problem is that the pandemic hasn't acted like that. The first thing that many people found was it is very difficult to operationalize those guidelines: Taking theory to practice, in other words, was difficult.
The [longstanding] principle that's supposed to underlie crisis standards of care is that we are going to maximize benefit to the population, right? [But] health is not distributed in an equal way in our society. So that definition was going to potentially disadvantage people who are already disadvantaged. I think seeing it play out in reality, and especially in this day when there's more and more community discussion about racial disparities and racism, it takes on a different tone in reality.
How do doctors work on a gradient in those moments where you're dealing with a not-quite-crisis?
As an ethicist, I really like precise definitions and buckets. But as a clinician, I know that the real world is rarely like that; that's the crux of the problem. There's not really a way of accommodating this kind of gradient in care, and this middle gray zone is where we've seen clinicians' distress in taking care of patients, when they are left to make up their own way of approaching this situation.
And despite all this planning that we just talked about, there was no kind of common recognition of what crisis capacity would look like and when we should institute these plans.
You've noted that the word “rationing” has a stigma. How do differing interpretations of what rationing means, or a desire to avoid using that word, impact our ability to manage resources during the pandemic?
Rationing has a negative connotation. And it can relate to both implicit rationing — so, rationing without a formal structure — or explicit rationing, in a more formalized, overt way like a triage structure.
A lot of the clinicians were very emphatic that they didn't see rationing as taking place. And I think that's because we have a very kind of narrow idea of what rationing is. In many people's minds, rationing is the triage team. That's how rationing happens. But I think there's also a broader idea of what rationing is — it’s not just allocating two ventilators to three people and deciding who gets one.
There’s a question of whether these more ambiguous situations, where people were delaying treatment or giving people half treatment, are considered rationing. Where does that fall in the spectrum of the Institute of Medicine [crisis] algorithm? I think that's unclear. So it was interesting that people were making a clear distinction between what they were practicing and rationing. And I think that's because of the stigma.
I remember a person coming up against a situation in which there would no longer be any clinical way of distinguishing between patients, which feels outside of our scope of expertise, to choose people based on that. That seemed wildly inappropriate to this person. They drew a line between choosing people based on clinical indications and moving beyond that to choose based on kind of arbitrary factors.
What kinds of conversations were triage teams having with frontline workers to help them prepare?
They never really — at least in our experience — interacted with clinicians on the front lines. That was part of the problem. These people in the triage teams were preparing themselves and were thinking through the issues and the ethical implications, and they were all ready to be a support structure for clinicians in approaching these very difficult situations. But because what happened didn't align with our understanding of what crisis capacity was, they never got deployed.
How did clinicians react when resources started becoming limited?
Some of the things were clearly outside of the usual scope of practice. For instance, I'm a nephrologist, so I deal in dialysis a lot. Some of the decisions that clinicians were having to make in New York about dialysis were, if you have three people with emergent needs for dialysis, who goes first? Do you give them each a little bit of care to try to get them all along to the next day? That's the kind of thing that feels wrong — it's nothing that we would ever do in usual practice.
And I think that not having the language to say that this was related to resource limitation, and kind of the boundary of when [making these decisions] was OK and not, was also distressing. And having messaging from institutions and regions that we're not in crisis capacity, but then being on the ground and being forced to make these kinds of decisions about who goes next, creates a cognitive disconnect that was distressing, too.
Even in outpatient, low-acuity settings, clinicians were distressed by whether it was OK to defer routine care. It was, understandably, emotionally exhausting ... just thinking about having to make these rationing decisions was nauseating [for clinicians].
People felt disconnected from the reason that they went into medicine. I mean, clinicians go into medicine because they want to help people. There's one particularly dramatic quote that we included [in the study] about someone really questioning whether they were a clinician or some kind of judge or, I think, an Angel of Death. That was hard to hear. They were feeling like they were placed in a role that just didn't align at all with their professional identity.
When doctors had to make decisions on their own, what trends did you see in their choices?
Clinicians put in positions [where they had to prioritize patients] often talked about choosing based on age or comorbidities. And I think that we saw some [people] relatively comfortable with that decision, because age and comorbidities we know are aligned with someone's prognosis, right? But there was clearly also a certain amount of ambivalence about whether that was OK.
It was surprising to us how creative and ingenuitive clinicians can be when they're really up against the wall. But that also meant that sometimes the best they could do was far below [what's] functionally equivalent to usual care. Clinicians went to any lengths they could to [avoid] categorically deny[ing] treatment. So one of the best quotes was that everybody gets a little bit of bad care, right? Anything to have to [avoid making] that ultimate decision about who lives and who dies was what they were trying to do.
What did restrictions on contact with patients and visitors mean for care?
There's a lot of uncertainty about whether it's OK to not see patients. There are people that thought that it really impacted quality of care. And that's what our last theme is getting at: That even if we were in a situation where we had strict Institute of Medicine categories, it's not just resource limitation that is affecting the quality of the care and affecting whether it meets that bar of being functionally equivalent to usual care. It makes it all the more difficult to recognize what is an acceptable standard of care.
How does the rapid pace of science and changing health guidance in the pandemic impact doctors' medical decisions, or even our understanding of when we're in a crisis?
If the bar for a crisis is shifting all the time, it's difficult to appreciate when we've hit it, and when we're practicing outside the scope of usual practice.
Did clinicians in the Pacific Northwest have unique experiences relative to those elsewhere?
Well, we didn't do a formal comparison, but as you'd expect, people in Seattle were not as impacted by this kind of dramatic resource limitation. They did experience resource limitation, it's just that they were to one end of a gradient, and people in New York were just at the other side of the gradient. People in New York, New Orleans, were describing being right on the edge of having to ration care, but not quite getting there. And, again, I think that what this analysis shows is that they really were in crisis. It just didn't look like what we expected it to look like.
Did the pandemic redefine what sufficient care looks like? Or did it just disrupt our ability to provide it?
I hope that it provides a lens on a definition that is difficult, even in the best of times. I think the idea of there being an “optimal care” is probably not very meaningful. First of all, what the best care is depends on an individual patient's preferences and values. And second, even in the best of times, we're impacted by resource limitation. It's just not as discrete as a ventilator being gone. It's limited clinic time, provider availability, financial resources. So I think that my hope is that this experience — and this idea of a gradient of resource limitation impacting clinical decisions — will help us reflect a little bit more on what's happening, even in usual times.
We're taught to actively not involve that as part of our decisions, for good reason. I think that what this is teaching us is that reality is messy — and the only way to avoid resource allocation happening in a kind of haphazard and unfair way is to recognize the messiness of reality and try to come up with a process for making the best decisions we can, given that we don't live in a perfect world.
What are some of the ways we can address that messiness?
First is having a new idea of what it looks like to be in crisis. A crisis might not look like what the Institute of Medicine described, what we thought it would look like before — so that we can enact more institution-level support for clinicians making these difficult decisions. We need, as a society, to come up with what is it to trigger crisis capacity.
Second is defining a role for people prepared to be triage team members. These are the people thinking about ethical implications, but their expertise is not being utilized because we haven't found a way to engage them during this intermediate zone. One way to do that would be to have them consult with frontline clinician teams to help them sort through the ambiguous cases of resource limitation — and then, those people would also be in a good position to recognize when we were about to hit a crisis and be able to report that up in real time.
I think the last recommendation might be a bit self-serving, as someone with an ethics background — for clinicians to have more training on how to sort through these ambiguous cases, and how to recognize conflicting values.
Interestingly, I talked to one of the clinicians on our institutional planning groups about this, and they said their response to that last suggestion was that ethicists should also have more clinical training, which I think is actually a really good point. A lot of why we ended up in this situation where the principles that are guiding our response to the pandemic weren't operationalizable is that ethicists might not appreciate the kind of clinical, practical aspects that go into this kind of planning in the same way that clinicians do.
Now that we are solidly in the middle of a surge, what are your biggest concerns when it comes to resource allocation and helping doctors make choices? What kinds of conversations should we be having?
I think number one is acknowledging that the problem is happening. And having clear guidelines on the criteria to make decisions and who is to make these decisions.
The problem is it's hard to anticipate what's really going to happen on the ground. So to a certain extent, there is going to be distress about this, and we're not going to be able to predict how we help clinicians, because we don't know what's coming.
So maybe a last point is just to have that humility going forward. And be vigilant about when this is happening, so that to the extent that we can, we can come up with new ways of supporting clinicians in real time.
What was it like interviewing colleagues in the middle of making these decisions?
I thought that there might be more of a barrier there, but people said that it was pretty therapeutic to discuss these issues. And it was heartbreaking, honestly — it was heartbreaking hearing some of the people that I work with being so distressed about how the pandemics impacted their work and their home life.
What is the big takeaway of the research?
I think that even in regular practice, we are trained as clinicians to completely believe that we're making decisions only based on what the patient needs. Anything to do with resource limitation, or external considerations, we're supposed to not let impact our practice.
And that's for very good reasons. Because, one, if you're considering resource limitations and patients' interests, there's these kinds of conflicting responsibilities and duties that are very hard to align. Two, we know a lot about clinicians’ implicit biases, and even if we're trying to act fairly, there's plenty of research and more and more understanding to say that we need to do better to get over these implicit biases. But if you can avoid making decisions that include that, then all the better. And then third — and it's been important in this pandemic setting — as an individual clinician at the bedside, you may not have the big picture situational awareness to know how much of the resource there is and how aggressive you need to be about limiting resources. So for all these very good reasons, we're trained that there's kind of a black and white line between patient considerations and societal resource limitation considerations. So when we're planning for the pandemic, we planned with that kind of conceptual structure in mind.
And what we found — what we reported in our paper and what has shown up in a lot of perspective pieces in the popular press and the literature — is this distress at finding that this bright line doesn't work for the pandemic. And we tried to flush out some of the reasons why. And obviously, there needs to be more work in it. And I hope a new plan to help clinicians in this case.
Did you learn anything about what happens at home, when the shift ends?
One of the interesting points was that sometimes they would see different policies and procedures at work than at home. And that felt arbitrary, because they're experiencing the same kinds of things at work and at home. And some of them were uncertain if that meant that these policies were arbitrary or that they weren't working. People were kind of nihilistic about that when they saw this kind of disconnect between home and work.
Do you have plans to do another round of information gathering?
I'm thinking about it. I mean, to be very honest, it was mentally and emotionally a lot to take on.
Dr. Kate Butler conducted her work alongside Drs. Susan Wong, Aaron Wightman and Ann O’Hare.
