One of those ethicists, with whom I recently spoke by phone, is Christine Mitchell, the executive director at the Center for Bioethics at Harvard Medical School. Mitchell, who has master’s degrees in nursing and philosophical and religious ethics, has been a clinical ethicist for thirty years. She founded the ethics program at Boston Children’s Hospital, and has served on national and international medical-ethics commissions. During our conversation, which has been edited for length and clarity, we discussed what ethicists tend to focus on during a health crisis, how existing health-care access affects crisis response, and the importance of institutions talking through the ethical implications of their decisions.
What coronavirus-related issue has most occupied your mental space over the past weeks?
One of the things I think about but that we don’t often have an opportunity to talk about, when we are mostly focussing on what clinicians are doing and trying to prepare for, is the more general ways this affects our society. People get sick out there in the real world, and then they come to our hospitals, but, when they are sick, a whole bunch of them don’t have health insurance, or are afraid to come to a hospital, or they don’t have coverage for sick time or taking a day off when their child is sick, so they send their child to school. So these all have very significant influences on our ability to manage population health and community transmission that aren’t things that nurses and physicians and people who work in acute-care hospitals and clinics can really affect. They are elements of the way our society is structured and has failed to meet the needs of our general population, and they influence our ability to manage a crisis like this.
Is there anything specifically about a pandemic or something like coronavirus that makes these issues especially acute?
If a person doesn’t have health insurance and doesn’t come to be tested or treated, and if they don’t have sick-time coverage and can’t leave work, so they teach at a school, or they work at a restaurant, or do events that have large numbers of people, these are all ways in which the spread of a virus like this has to be managed—and yet can’t be managed effectively because of our social-welfare policies, not just our health-care resources.
Just to take a step back, and I want to get back to coronavirus stuff, but what got you interested in medical ethics?
What got me interested were the actual kinds of problems that came up when I was taking care of patients, starting as early as when I was in nursing school and was taking care of a patient who, as a teen-ager, had a terminal kind of cancer that his parents didn’t want him to know about, and which the health-care team had decided to defer to the parents. And yet I was spending every day taking care of him, and he was really puzzled about why he was so sick and whether he was going to get better, and so forth. And so of course I was faced with this question of, What do I do if he asks me? Which, of course, he did.
And this question about what you should tell an adolescent and whether the deference should be to his parents’ judgment about what’s best for him, which we would ordinarily respect, and the moral demands of the relationship that you have with a patient, was one of the cases that reminded me that there’s a lot more to being a nurse or a health-care provider than just knowing how to give cancer chemotherapy and change a bed, or change a dressing, or whatever. That a lot of it is in the relationship you have with a patient and the kinds of ethical choices they and their families are facing. They need your information, but also your help as they think things through. That’s the kind of thing that got me interested in it. There are a whole host of those kinds of cases, but they’re more individual cases.
As I began to work in a hospital as an ethicist, I began to worry about the broader organizational issues, like emergency preparedness. Some years ago, here in Boston, I had a joint appointment running the ethics program at Children’s Hospital and doing clinical ethics at Harvard Medical School. We pulled together a group, with the Department of Public Health and the emergency-preparedness clinicians in the Harvard-affiliated hospitals, to look at what the response within the state of Massachusetts should be to big, major disasters or rolling pandemics, and worked on some guidelines together.
When you looked at the response of our government, in a place like Washington State or in New York City, what things, from a medical-ethics perspective, are you noticing that are either good or maybe not so good?
To be candid and, probably, to use language that’s too sharp for publication, I’m appalled. We didn’t get ourselves ready. We’ve had outbreaks—sars in 2003, H1N1 in 2009, Ebola in 2013, Zika in 2016. We’ve known, and the general population in some ways has known. They even have movies like “Contagion” that did a great job of sharing publicly what this is like, although it is fictional, and that we were going to have these kinds of infectious diseases in a global community that we have to be prepared to handle. And we didn’t get ourselves as ready, in most cases, as we should have. There have been all these cuts to the C.D.C. budget, and the person who was the Ebola czar no longer exists in the new Administration.
And it’s not just this Administration. But the thing about this Administration that perhaps worries me the most is a fundamental lack of respect for science and the facts. Managing the crisis from a public-relations perspective and an economic, Dow Jones perspective are important, but they shouldn’t be fudging the facts. And that’s the piece that makes me feel most concerned—and not just as an ethicist. And then, of course, I want to see public education and information that’s forthright and helps people get the treatment that they need. But the disrespect for the public, and not providing honest information, is . . . yeah, that’s pretty disconcerting.
What would an ethicist advising Washington State or New York City say to policymakers?
I don’t know which ethicists are advising the current Administration. The Trump Administration decided not to have a National Bioethics Commission, so there isn’t one in place. So I don’t know who’s doing that.
If there were a National Bioethics Commission, what sort of things would they be talking about and thinking about?
So they really have to—and we do as ethicists working with people in public health—think about how we actually allocate limited resources. We clearly don’t have enough diagnostic tests, and we’ve been very slow in making them available. And clinicians have developed some workarounds, by taking pulmonary CT scans, and things like that. And figuring out, by history, who are the presumptive cases that we should use the limited numbers of tests that we have on now.
It’s just, over all, issues about allocation of limited resources, or that word that lots of people don’t like to utter, “rationing.” We are going to have to figure out how we choose who has what kinds of resources, whether it’s the testing piece, or it’s inpatient treatment, or it’s the testing of the new vaccines when we, a year or more away, get to the point where we’ve got something suitable for human testing. And then, if we’ve got vaccines to use, as we ramp those up, on whom are they used? One of the most live issues in this kind of debate is using those limited numbers of vaccines in the early days for first responders and health-care providers in order to maximize the capacity of the health-care system to treat the people for whom we don’t have enough vaccines yet. So it’s those kinds of allocation and rationing decisions that I worry about and anticipate are going to get more intense.
How does an ethicist come to conclusions about that, or to give advice about that? Are you looking at past pandemics? Are you consulting philosophy books? What does a medical ethicist do, exactly?
Often, the job involves deliberating together. It might involve taking a historical look at past ways of responding to pandemics. In the United States, there are some states that are further ahead than others in their departments of emergency medicine and departments of public health, in getting consensus within the state about how they will handle pandemics and how they will allocate resources. Part of it is looking to see what’s already been done. Part of it is comparing the values of a variety of stakeholders, about both what people think ought to be done and why, and what people think is practically implementable, and why or why not? That kind of deliberation together is very typical of how ethicists work with clinicians and others to figure out, all things considered, what’s the best approach to, say, allocating scarce resources.
One of the things that we talk about with philosophers are the differences between something like a straight egalitarian approach, where everybody’s life is equal and you don’t make distinctions among people in how you allocate resources, or a much more, in some ways, defensible approach in a situation like this, which is to think about maximizing the number of lives saved—which I’m sure, from your years in undergraduate philosophy courses, you’ll recognize as a utilitarian approach.
So a lot of us have settled, and I would put myself in this camp, on a kind of prioritarian approach, where we want to both acknowledge that the primary goal is to maximize the public’s health and the number of lives saved. But we also want to insure that there is attention to those who are the worst off, and particularly making sure that the most vulnerable have special attention as we think through whether they can benefit from the allocation of these resources and how they are included among those to whom the resources would be allocated. So it’s kind of a modification of a utilitarian approach.
How much are you thinking about ethical problems involving restricting people’s freedoms, however necessary that might be?
I have to say, when I saw what China was doing, I thought, Oh, my God, that’s amazing that they can do that. I was impressed at the way in which China could impose a quarantine and lock things down. And I think that’s hard to do, but Italy’s doing it. In the United States, we have a level of voluntary compliance, for the most part. People who are trapped on cruise ships—that’s not voluntary. But, for the most part, we have people who are responding to advisories from various people and changing the way we behave.
I do think that tension between the community good and the restriction of individual liberty is absolutely of concern to ethicists. It’s just that it seems like people are tolerating the restriction of individual liberty pretty well so far.
Do you think about media coverage and the ethical responsibilities of how something like this should be covered?
I do, indeed. I’m not usually such a Pollyanna, especially about the media, but, in a time when our politicians are sometimes very unreliable about what’s going on, I have been grateful to the media—at least, the media that I watch—about how diligent the efforts have been to get as much information as they can publicly accessible, and as quickly as they can.
Have your opinions about medical ethics changed over the course of your career in some broad way? And, if so, how?
Well, it hasn’t changed dramatically. What I have realized, and this is probably more a function of age than anything else, is that I am more deeply aware of the necessity of carving out institutional space for deliberation on hard ethical tensions. So, in the debate about allocating resources in a pandemic, we have to work with our colleagues around what kind of space is going to be made available—which means that other people and other services have to be dislocated—what kind of supplies we’re going to have, whether we’re going to reuse them, how we will reallocate staff, whether we can have staff who are not specialists take care of patients because we have way more patients than the number of specialized staff. So one of the things that we’ve crafted in the past is this understanding that it’s the responsibility of those at the political level and at the departments of public health to establish when it’s appropriate to signify, not only to health-care providers, but also to the population in general, when we are actually going to be operating under crisis standards of care, because the need is so major and the spread is so massive. Now, we’re not there yet, but it’s possible that we will be there. And what that also means is not only that the standard of medical care is going to shift a little bit in order to treat these huge numbers, but also our choices about treating some and not treating others. So it has an ethical component to it. Do you remember the big earthquake in Haiti, when we sent our ship down there?
Yeah.
A colleague of mine was on that ship. He was an ethicist in the Navy. And they developed a system in the allocation of resources for people who would be transported to the ship for surgeries and other kinds of care, around the really hard, one-to-one ethical choices that have to be made about not having enough spots on the surgical schedule or not having enough ventilators, and taking someone off. And our understanding of individual care providers’ compassionate response and responsibility to individual patients is such that expecting every clinician to withdraw resources from a patient, or not allocating them to a patient that they wish they could, is not going to be something we can always expect everyone to do.
And so they set up on the ship a clinical-ethics committee as an appeal process for clinicians and others who felt that their families weren’t being given something that they should have, so that there was an ethics committee for dealing with the hardest of the hard allocation decisions. And I think that may be a good way of dealing with some of the individual differences of opinion about when something should or should not be allocated to an individual. That’s an organizational matter.
Is this why the lack of a bioethics commission bothers you so much? It seems like you keep coming back to this idea of talking and deliberating as the foundation of some sort of ethical response, and that, without these things, mistakes are likely to be made. Or am I reading too much into what you’re saying?
No, I think that’s fair, because we’re a diverse society and there are multiple stakeholders who are responsible in these situations. And so, in order to craft a response that is fair, you need those perspectives all together in order to deliberate and think through all things considered and, given these perspectives, what we ought to do, so that we can have advice that people will know was given due diligence regarding the variety of perspectives that need to be taken into account.
What did you tell end up telling that teen-ager, by the way?
I dodged. I said, “What makes you ask that?” I suggested that he speak to his physician with his parents.
Would you do anything differently today?
I think I would have been better at anticipating it. There were no clinical-ethics committees in hospitals then. And now there are, and they can help prepare workers for these things. But that was, like, 1971. And this is 2020.
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