An Ethicist on How to Make Impossible Decisions
Arthur Caplan, NYU’s chief medical ethicist, discusses the tough calls doctors have to make on how to ration care.
Tents are now strewn across Manhattan’s Central Park—a field hospitals in the literal sense—that resemble the convalescence wards of the 1918 flu pandemic. They sit a stone’s throw from some of the world’s most expensive real estate. Not to mention some of the world’s most luxurious brick-and-mortar hospitals.
In these tents, on the cots that sit less than six feet apart, it is expected that millionaires will lie beside people without a penny to their names. Care will be allocated based on where it can be the most useful and do the most good.
This is not a type of health care that most Americans are accustomed to. But already, rationing is upon us.
If you are one of the 7.6 million people in New York City, you are advised by city officials to stay home until you become short of breath. Typically, this is a sign of being on the brink of a critical illness. It means a respiratory infection has spread into the lower airways, and it could quickly progress to the point of needing supplemental oxygen or intubation and mechanical ventilation. But, at this point, medical care—prior to the point of becoming short of breath—must be rationed. Clinics and emergency departments cannot currently handle being filled with people who, sick as they may be, do not yet clearly require hospitalization.
New York, like other states, does not yet have enough hospital beds, masks, or diagnostic tests for the coronavirus to accommodate all who might need one. Certain rationing decisions are already being made, including which surgeries can be considered “elective” and canceled, and which cannot.
Perhaps most ominously to the thousands of New Yorkers at home wondering just how short of breath is “short of breath,” we also do not have enough ventilators. By Governor Andrew Cuomo’s estimate, the state will need around 30,000 in coming months. We have about 5,000. Some new ventilators are being made, but this cannot happen quickly enough to meet that sort of demand.
And so, ethics boards at various hospitals are writing guidelines for how to manage allocation of life-saving resources like ventilators. These groups will deliberate and model various hypothetical scenarios, and then issue directives about what sort of decisions should be made. At a certain point, the calculus of American doctors will switch from the default of preferentially caring for the person who appears sickest to caring for the person with the greatest chance of benefiting from care—and with the greatest potential for years of life ahead.
These decision trees are guided by the four basic principles of medical ethics: personal autonomy, beneficence, non-maleficence (“do no harm”), and justice. In a fast-moving pandemic like this, these principles may look different in execution, but are no less important. A patient’s personal autonomy becomes limited based on, say, availability of resources. You may want a ventilator, and a doctor may agree that it’s necessary, and yet it may not be possible. The call to do no harm, likewise, can become a call to do as little harm as possible—or to do maximal good.
The question of who gets a ventilator and who does not, when two people are both in real need, is a question of justice of the sort doctors are not trained to adjudicate. But others are, and this is the moment they’ve been training for.
On this episode of the Social Distance podcast, Katherine Wells, the executive producer of Atlantic podcasts, and I talk with medical ethicist Arthur Caplan, head of the division of Medical Ethics at the NYU Grossman School of Medicine. What follows is a transcript of our conversation, edited and condensed for clarity. You can also listen to the full episode of Social Distance here:
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Katherine Wells: Can you give us a sense of what's going on inside hospitals? We keep hearing that things are getting really bad, but it's hard to imagine what it's like inside with any level of specificity if you're not there.
Arthur Caplan: The equipment shortages and protective gear shortages are definitely uneven between hospitals. Some do have equipment. Some don't. Some are getting a surge in patients. Hospitals on Long Island and some of the ones in Brooklyn are seeing pretty serious surges in patient demand. People are worrying about what to do when critical folks turn up positive—say the head of the ICU, or someone who's responsible for managing equipment.
There are people trying to manage people who don't want to come to work. Somebody who's pregnant and just afraid. A nurse or a social worker. How do you get them to come? And what do you say?
Wells: Have you had experience with this kind of pandemic situation before?
Caplan: I'll tell you what's different about the situation now. We make rationing decisions all the time. For example, I've been working for decades on the system we use to distribute scarce organs for transplants. Every day many people die who don't get a transplant because we don't have enough.
Here's what's different. First, many of the people, doctors and nurses, social workers, techs, they've never faced rationing, even transplants. They have not impacted most health care workers. So they've never faced the possibility that they could be involved in rationing. That ups the ante and makes the tension and the emotion and the fear much greater within the hospitals.
The other difference is that most people never worried about getting rationed—because they didn't need an organ, and they weren't sitting near an Ebola outbreak. Tell a rich person or well-insured person that they could face rationing, they've never faced that so they get nervous about it. The pandemic has raised the scope where rationing has to be considered to include everybody, even worldwide.
Wells: What do you think the hardest ethical questions we have right now are?
Caplan: How long is this podcast?
James Hamblin: There was discussion over the weekend about making sure that there not be discrimination against elderly people, against chronically ill people. There is that tension, which is similar with organ donation, where you have to think about the utility of how many “quality life years” does a person have if they receive an organ.
So it seems like there is discrimination against elderly and chronically ill people built into so many rationing decisions. How do you navigate that in a way that if, say, if it comes to ventilators, is as nondiscriminatory as possible—while making decisions that are, by definition, discriminating who gets what?
Caplan: When I look at policies, including my own institution’s, the first thing you have to commit to is that you won't discriminate. I'm looking for a statement that says everyone will be considered. That includes elderly people, the chronically ill, the disabled, and also would include no discrimination by gender or race or culture. We're trying to lead with the principle, and this is what I would call fairness, that everybody has a shot. Everybody has an opportunity.
That's somewhat true in transplant rationing, and it's somewhat true with emergency medicine rationing. You begin by saying in order to get support for rationing, you have to make people know that the squeaky wheels won't have an advantage, the rich won't shove aside the poor, the disabled just won't be killed. We're not going to have hard and fast age boundaries.
You then move on to justice. And your question, James, is what about biological and physiological differences? The answer to that is, that's the first consideration. Try to maximize the chance of saving a life. I do think that the moral principle that has emerged is that first you try to save the most lives.
That does put people who have underlying chronic illnesses involving their respiratory system—chronic obstructive lung disease damage from vaping, smoking—that could put you down lower than somebody else. I wouldn't start with an age cutoff because we've seen healthy 70 year olds and very, very sick, compromised 20 year olds. But it would be fair to say if you can't sort them out by biology and physiology, then you go to age because age is somewhat of a predictor of who's going to do well.
Young people just do better than older people. It's not like 40 versus 30, it's more like 20 versus 70. I think Americans also want kids first. We haven't seen many kids get infected here, but most of the policies that I've had input to, we try to see children first, too.
Hamblin: We don't want the wealthy and powerful people to have unfair access. At the same time, there are questions of a person's utility in a specific scenario, like if you are the head of emergency medicine or ICU care at a hospital and your health ends up subsequently meaning many more people could be kept healthy. Do people in positions like that get priorities over people who ... who are of less ... I don't even know how to use these words appropriately without being offensive.
Caplan: Significance to trying to save more lives. I know where you're going. So the answer is yes. But I think you apply the physiology test first. So a very, very sick, dying head of an ICU [who] is not probably going to do well on a ventilator and they're gonna get excluded. Where I believe we should take into account health-care worker status is a tiebreaker. So after you get by physiology, after you get by age as a predictor, then you probably are going to say we got to get people back to work if we can, and they will save more lives that way, and we'll be prepared for the next wave of this virus if it bounces back. Which it could.
Wells: So what are the factors, if we can summarize them, that are going into these decisions? It's the person's likelihood of surviving for a meaningful amount of time, and what is the next factor?
Caplan: Age. So you're probably putting kids first and then you're probably putting younger people over much older people just because age is a predictor of resilience. It's true for any treatment we can think of, just about, that they'll do better than the elderly. Then you move to tiebreakers like, are you a health-care worker, broadly defined. You might look at a tie-breaker like, is there a place to send you back to. Some people are going to be worried about, if you're psychotic or mentally ill, how could we manage you, even if we tried to put you on a ventilator, would you disrupt the unit, imperil other people, do you need more resources, that kind of thing. So you'd be watching that, too.
Wells: It's hard for me to think through this. This is very uncomfortable.
Hamblin: It runs up against some of the advocacy with people concerned that age needs not to be a point of discrimination.
Wells: And that mental illness shouldn't be a point of discrimination nor disability in any way.
Caplan: Here's the way to think about that. I said when I started, everybody gets considered and that's the nondiscrimination at the front end. Who's coming into the funnel toward resources? That's what we do with transplant; that's the right thing to do. But it does not mean that age should be ruled out as a distribution factor. If you're 94 and you have four underlying chronic illnesses and you just had two heart attacks, you are not the best candidate. Right. If you're 70 and you're in pretty good shape, then there's a 30-year-old who's blown his lungs out from vaping and smoking. Well, maybe the 70-year-old will go ahead. That's physiology.
We have to be careful here. We don't want to rule out people just because they're disabled. There's no blanket discrimination against age or disability. That's wrong. But when they are relevant to outcome, then I think they count.
Hamblin: Northwestern Memorial Hospital said last weekend that they're considering a policy where they would make every COVID-19 patient DNR.
Caplan: Let me explain that a little. One way to get resources is to triage at the front end and the other way is to stop treating some of the back end to free up a bed, personnel, ventilators. We will have decisions to make about stopping because not everybody is going to recover. Does that mean automatic do not resuscitate? Probably not, because you can make the judgment, but it does mean there's going to be a quicker jump to “do not resuscitate” than you might have when resources were generous—meaning I might take a chance and keep somebody going longer than seven days if I had empty beds and personnel around and I wasn't afraid of exhaustion or infection of my staff. In a crunch, I'm probably going to make that call sooner.
The other problem is this. Let's say you have a heart attack in the COVID ward. The crash team would have to get their gear on, protect themselves and get there in time to try and resuscitate you, and the reality is, that won't happen. It will take them 20 to 30 minutes to gear up. So in reality, it's not just DNR. It's, can anybody get in there as a resuscitation team? Unless you're really busy and keep people sort of in their gear ready to go, but that's devoting a lot of resources to a remote possibility. That's the other limit on what's happening in terms of resuscitating people. It's not just like you run in there like we see on TV with the pads and your team and they're not wearing anything.
Hamblin: At a place like NYU, you have a multi-disciplinary ethics team that helps to make guidelines. Doctors have the ethical obligation and the legal obligation to do certain things. This would be a really abnormal thing to have someone someone code in a COVID ward and simply to not respond despite their advance directive requesting that and despite, in normal situations, they would be resuscitated and in this one they're not. How does that line get drawn to us? Is there someone from an ethics board that says, no, don't go? Does the attending have to say that? How is that decision made?
Caplan: At NYU and other places, that's what the policies say. We're trying to go into not just who's coming in the door and triaging, but what will we do if we can't resuscitate. Do I care what your living will says in a pandemic? I probably don't. I probably won't even read it. I probably don't even know where it is. Remember, many people are isolated in these units. Their loved ones may or may not be around to communicate something. It's not business as usual. Rarely do we find living wills that get read to guide treatment in normal times. It’s usually your friends or family, your partner who speaks up and says, you know, they wanted everything or they didn't. But if they're in the hall far away and we don't want them in the intensive care unit, or surrounded by coronavirus patients, that isn't even going to happen.
So, James, the answer is: That’s what the policies are for. You're trying to give health-care workers the assurance that these are not normal times, and if they follow these rules, the trustees, the leadership will be behind them.
Then, you’re probably trying to resuscitate your hospital attorney who's having a coronary over the fact that we're throwing all the standard care stuff out the window during a pandemic.
Wells: I know that medical professionals are more used to thinking about life-and-death scenarios, but I can imagine for a lot of people listening, this is disturbing to think about. I'm wondering if you have any advice on how to think through this situation since you've been thinking through these kinds of ethical issues for your whole career.
Caplan: I've sat on committees and said, you're gonna get medicine and you're gonna die. I know it's tough. I know it's emotionally wrenching. I know it's miserable. I know you don't want to do it. It wears on you, and it should.
Part of my answer is, we should be feeling terrible and miserable when we have to do this.
I've said for 35 years that I wish people would give more organs so that I didn't have to be in a committee to try and decide who is going to get a transplant. I'd really rather not do that, and I'd rather avoid rationing by trying to stretch our resources.
I like it when the hospital ship pulls into New York Harbor and I like turning the Javits Center into a field hospital. I like when hospitals figure out how to share between, say, the V.A. system and the city system. Those are ways to avoid rationing. And I'm all for that first.
But you do need counseling, and you do need emotional support. I'd say we have to pay attention to that, too, for our own health care workers. There are plenty of nurses and social workers and doctors who don't do this normally. They don't normally say no, I'm pulling the ventilator off you and your loved one had to die. They don't know how to even approach the family. We've got to figure out: Is there enough palliative care? We're not going to let people suffer, I hope, if we don't have enough resources to try to save everyone. Are the chaplains and the social workers and the psychologists going to be around to provide support to people, too? That's got to be worked into these policies.
Wells: It seems like outside of the hospital context, everyone is being asked to make ethical tradeoffs on a daily basis between their comfort or needs and others and every small decision you make, even the daily decisions about like how do I get food or can I take a walk? All of these things become ethical decisions. I'm curious if you had a suggestion on what framework are we supposed to apply?
Caplan: I think our job is to protect one another, protect our families, not bring infection into our homes, not bring it to people we live with, not bring it to our neighbors. The principle is, yes, protect the community. But it's also protect yourself and protect those that you're isolating with.
We should not be having, you know, sleepovers. It's not the time, as one of my faculty said, her parents were going to go antiquing in Maryland. I was like, you're going to go antiquing?
Wells: This is not the time for antiquing.
Caplan: I don't even think there's anything open to go antiquing.
But, you know, you hear people say, I have to break the isolation. I'm going nuts here. Many people live in small spaces. I get all that. Go for a run. Stay away from other people. Take a walk. Somebody told me, look, in World War Two, there was a big fight, Battle of the Bulge at Bastogne, and the American troops are surrounded. There is little food. It was freezing winter. They had to wait 60 days for somebody to show up to relieve them. This ain't Bastogne; it's just that you have to watch a lot of reruns on TV and decide whether or not you're really going to take the dog for a 59th walk of a day.
Wells: This is very doable.
Caplan: I mean, look, what are we, two weeks and a half into quarantining or isolating around the east and Seattle? It's still a ways to go. I would guess we're not going to be out till the middle of May. And even then, not all of us are coming out. Maybe people who are a little healthier or a little less at risk, or maybe people who tested positive but have been through it. They may start to wander around a bit. I don't mean to make light of it. It's tough. It's hard. I've never been so grateful for the Internet.