JOSH: Hello and welcome to Clearer Thinking with Spencer Greenberg, a podcast about ideas that matter. I'm Josh Castle, the producer of the podcast, and I'm so glad you've joined us today. In this episode, Spencer speaks with Jacob Appel about the growing mental health crisis, the shortage of psychiatrists, and the revolutionary potential of genetic testing.

SPENCER: Jacob, welcome.

JACOB: Thank you for having me.

SPENCER: You are perhaps the most polymathic person I've ever had on the show. You write fiction and nonfiction. You're a bioethicist, you're a doctor, you're a lawyer. I think you're also a tour guide. Is that right?

JACOB: Yes, but to my mother, I'm still her son. She's not the rabbi.

SPENCER: I guess you just can't live up. Before we get into a variety of different interesting topics, I'm just curious. This question must always come up for you: how do you do so much stuff?

JACOB: The short answer is, I only do things I really enjoy doing, and I'm really lucky that there are a lot of things I enjoy doing.

SPENCER: Do you just work all the time, or do you take time to relax and destress?

JACOB: I think I really don't see the distinction between working and relaxing, because I think things other people might think are work I actually think are fun, like writing bioethics papers. I think if I viewed these things as work, I'd probably be miserable and not get very much done.

SPENCER: That makes a lot of sense. One of the topics I want to discuss with you is the mental health crisis. To what extent is there really a mental health crisis now? This is being debated, with Jonathan Haidt's book, The Anxious Generation, talking about how maybe Gen Z is having all of these mental health problems that other generations didn't have. But then others push back and say, "Well, no, not really, not necessarily." So what do you think the current state of mental health is right now?

JACOB: There's definitely a mental health crisis. I work on the front lines in the psychiatric emergency room at night, three days a week, and I can tell people that when I started the job, I would see one young adult every week. Now I see probably about two at night. So that's a transformative number.

SPENCER: Wow. And what do you attribute that to?

JACOB: I think there are two major factors. One, people are getting sicker for various reasons I can talk about. The other factor is less access to care and fewer providers, and it's that combination that is creating the crisis. There are two causes of the crisis. One, people are getting sicker at baseline for various reasons we can discuss. Secondly, it's harder to access care, which creates a second crisis pushing back against the first one.

SPENCER: So what do you mean when you say people are getting sicker? Do you mean in a mental health regard in particular?

JACOB: Yes, absolutely. I think there are a number of factors. It's impossible to isolate one, but a combination of the influence of not just social media, but our disconnection from other people, exacerbated by the pandemic, what Putnam refers to in his concept of Bowling Alone and the breakdown of social structures is playing a very large role, along with a number of specific factors. One example I always give is that many college students are traveling much further from home now than they used to. So when they do face a crisis, they don't have people to turn to.

SPENCER: Do you see this as something more affecting the younger generation, or do you think this actually applies to the older generations as well?

JACOB: I think I am seeing it more acutely in the younger generation, but I think our whole society is feeling the consequences of this disconnection, and you can also see it at the opposite end of the age spectrum. All the evidence now about the health consequences and psychiatric consequences of loneliness, which really become pandemic among older people.

SPENCER: Is it primarily manifesting as increased anxiety and depression, or do you see this across different mental health conditions?

JACOB: So I think it's most extreme among anxiety and depression, but I think it manifests in a range of other ways. It exacerbates underlying traumatic experiences. It can exacerbate or make more rigid unhealthy personality phenomena. So in a large number of ways.

SPENCER: You also mentioned that access to care has changed. What have the changes been there that you've seen?

JACOB: I think the most significant change has been simply fewer psychiatrists. One effect of COVID is that many people in psychiatry who planned on working until they were 85 suddenly found themselves working from home on Zoom part-time at 65 and said, "You know, I really like this, so I'm going to keep doing this, but not take any new patients." Since there's already a shortage of psychiatrists, and psychiatrists are the oldest profession in medicine in terms of the average age, we face a bottleneck where about a third of psychiatrists are set to retire or retire imminently in the next five years.

SPENCER: And why isn't there a strong pipeline of new ones being created?

JACOB: Part of that is artificial, because the government limits the funding for residency programs and the profession supports those limitations. The fewer psychiatrists there are, the more psychiatrists get paid.

SPENCER: This is something that I've often thought about, how we have a guild society, but we never really think of it that way. If you think a lot of the major components of society are essentially guilds, . You have a lawyer's guild, you've got a doctor's guild, you have a dentist guild, and so on, and these guilds are often very integrated into society. For example, as you alluded to, I don't think people realize it, but residencies are funded by the government in most cases.

JACOB: Absolutely, though, I will suggest to you there's a significant difference between lawyers and doctors in the following sense: if I want to build a law school and I raise the money to do it, I'm going to have an easy time getting the state to approve my doing it without backing from the federal government and residencies to support me. It's almost impossible to start a new medical school, and the seats are regulated much more tightly. So medical schools are issuing students or opportunities for students much more like issuing taxi medallions or liquor licenses where there's really a fixed number at present.

SPENCER: Do we have a broad-scale shortage of doctors, or is it more about certain specialties that we don't have enough doctors in?

JACOB: Both. So we have an overall shortage of doctors. We also have a location problem, in the sense that doctors, for the most part, are in the wrong places. It would be better to have more psychiatrists in New York and Los Angeles, particularly psychiatrists serving lower-income people, which are even harder to find, or middle-class people, and taking insurance, which is even harder than that. There are far fewer psychiatrists in large swaths of the country, rural areas, and small towns. I always like to say there are more child psychiatrists in my office suite than there are in all of Wyoming.

SPENCER: Oh my gosh, that's wild. I have insurance from one of the big insurance providers, and when I go on and search for different doctors in my area, I often can find five hyper-specialists in some very narrow thing that I could walk to in 25 minutes. It's really wild. But that's really not the same across America, right?

JACOB: Right. The real challenge is, even you in New York City with good insurance will have a very hard time finding a psychiatrist who will take your insurance, because virtually no private practitioners accept any of the major insurance carriers.

SPENCER: Wow, that's really interesting because that's really different than most doctors. Where do you expect them? And why is that? Why are psychiatrists not taking insurance?

JACOB: Part of it is the rates the insurance companies pay simply do not compensate for the amount of work done. Because in psychiatry, you're paying for time, not for procedures, and the insurance companies' metrics are set up largely to pay for procedures and interventions. As one of my colleagues points out, if you took insurance and you couldn't take any private patients, they probably pay his overhead, but then he'd be a working-class individual after all those years of medical school.

SPENCER: Interesting how it's so different than a lot of doctors. Because if you go to a dermatologist, they do a procedure, they remove a mole, they're going to charge the insurance company, the insurance company reimburses them, and that's more how their business works.

JACOB: Exactly, and they will probably get a thousand dollars for removing that mole. That same insurance company might pay a psychiatrist who spends twice as much time with a patient $40 for a visit.

SPENCER: Oh, wow. Interesting. So what are our current approaches to trying to solve the mental health crisis going on?

JACOB: Unfortunately, they're somewhat haphazard. We have not seen a significant effort to expand the number of psychiatrists in training for a number of structural reasons, and more importantly than that, psychiatry in general is heavily underfunded. If you look at the amount of money spent on different diseases per lives saved, or quality-adjusted life years, psychiatry always gets short shrift. And why is that? Because if you're a politician, a mayor or a governor, the benefits from paying for psychiatric care in an economic sense are all long term, but the savings you get are all short term if you cut the funding.

SPENCER: Interesting. Why is that long term? You think that mental health would have immediate benefits within months of treating a patient.

JACOB: You may have immediate benefits for the individual patient, but you don't see the overall economic benefits of that patient getting back into the workforce, which takes time. That patient gets housing and therefore doesn't come back to the hospital multiple times. There's also a difficulty that the people who benefit and the people who are harmed by the funding are different. The hospital loves having psychiatrically ill patients because they pay bills. It's harder to quantify how the taxpayers benefit in the long run from people being healthy, and even if you could quantify that, there are simply different incentives from different parties.

SPENCER: You mentioned that you work in a hospital where you see patients sort of at the front line? Do you see a lot of patients who just come in again and again, month after month?

JACOB: Oh, absolutely, I would say about half the patients I see in the psychiatric emergency room, I already know.

SPENCER: That's wild. And so what is happening to those patients in between?

JACOB: Those who are fortunate have homes to go back to and family to support them, but many of them, unfortunately, are undomiciled. They live on the streets, don't get good care, because psychiatric illness, unfortunately, is often a cause for your family abandoning you, and social structures not supporting you. I will emphasize one mistake that many politicians of all stripes make: they spend a lot of money bringing sick patients to psychiatric ERs, we evaluate them, we say they need a higher level of social support, but there's no funding out there to get them the kind of housing or the kind of social support they need. The reality is, if you live on the street and I give you a psychiatric appointment two days from now in a different borough, and you don't own a watch, you're never going to get to that appointment.

SPENCER: I imagine if you're experiencing severe psychiatric challenges, that's going to make everything way harder as well.

JACOB: Absolutely. So it's one challenge compounding another.

SPENCER: When you have these repeat patients coming again and again, are they mainly there voluntarily, or is someone forcing them to be there?

JACOB: It's a mix. But I would say even the ones who are there involuntarily are not there involuntarily because they don't want psychiatric care. They'll often say to you, "Look, Doc, if you could actually get me the kind of care I need, help me get a job and a place to stay, get me somewhere I can be on meds long term, I wouldn't mind getting psychiatric care. What I don't like is being brought to the hospital every month because somebody sees me on the street talking to myself. You have me spend a day here, tune me up a bit, and then send me right back out where I came from." And I don't blame them.

SPENCER: Does it give you a feeling of futility? I mean, you're seeing the same patients over and over again and giving them band-aids, because that's all you can give them.

JACOB: If you thought about it in individual terms that way, I think it would be very frustrating. But I also think we do give the patient something. We give them kindness. I can give them a sandwich. I do the best I can for them in a system that remains deeply broken. Obviously, I would like the system to be less broken.

SPENCER: So what would your ideal system be? Imagine a patient comes in, they have a severe mental health challenge, you treat their acute needs, then what?

JACOB: I think the two things that have been proven time and again to make an enormous difference are scattered-site housing, where you take patients with severe mental illness and you put them not in homes for other people with severe mental illness, because it's sort of like putting a bunch of people who are now called a problem in the same building. The building will fall apart, and then people will drink. But putting them in middle-class apartment buildings and houses around the community, and then having them go to a day treatment program, not one of these programs where you go twice a week for two hours, but standardized day treatment. You get there at eight o'clock every morning. You have a community. You leave at five o'clock, and get a combination of psychiatric care, therapy, recreation, education, and training. The number of hospitalizations decreases. They are expensive, but they're highly effective, and over time, a state can cut back on costs.

SPENCER: You can imagine what people would be resistant to. Giving people housing and putting them in these day treatment programs, because you're basically funding their whole life, sounds really expensive, but on the other hand, having people who are mentally unwell, having people living on the streets, having people who are constantly needing acute psychiatric care and medical care, surely that's expensive too. What do you think is actually more expensive in the long run between the two?

JACOB: Oh, definitely. Giving people acute psychiatric care over and over again is both more expensive and more socially disruptive, because you have people bathing in public fountains and urinating on fire hydrants in the interim. But in some sense, you're right. The people's rational knowledge of what actually serves society best runs up against their visceral instinct. That seems unfair. In the same way, we know that paying people to go to the doctor, particularly paying people with less income to go to the doctor, will not just make them healthier, but save taxpayers a lot of money in the long run on more significant care costs. Again, people are still resistant to doing it because they feel it's unfair. I would point out to these people that being born with schizophrenia is also unfair, and there but for the grace of God go you or I.

SPENCER: That's a privilege. We don't often think about being born without schizophrenia. That's a pretty big one.

JACOB: We are very lucky that we are able to have this conversation and not be subject to this conversation.

SPENCER: I know you work in the New York area. Do you have a sense of how things operate in San Francisco and how it compares?

JACOB: I don't have a sense of San Francisco, specifically. I can say that New York, where things are far from ideal, is actually far better than most of the country, where there are far fewer psychiatrists, there are virtually no social support resources, and patients simply end up on the street without any care at all.

SPENCER: A surprising thing about San Francisco is that they do put a lot of money into homelessness services, and yet they seem to not have very good outcomes, as far as anyone can tell. It's kind of fascinating, whereas maybe New York, where they might be underfunded, I don't think they're underfunded in San Francisco.

JACOB: It's not just a matter of spending money, but it's spending money wisely and spending money in ways that the community may find popular. One of the challenges is, everybody wants to have homeless people with mental illness off the street, but nobody wants somebody who was previously homeless, who has a severe psychiatric illness, living in the apartment next door to them, no matter how stable that person might be at the moment.

SPENCER: Yeah, so I guess it's a form of nimbyism.

JACOB: Absolutely, and the worst kind. There are a few people in the United States right now that you can really treat badly or badmouth informally to the degree you can be psychiatrically ill.

SPENCER: When you see severe mental health cases coming into the hospital, do they tend to be schizophrenia or bipolar? What do you tend to see?

JACOB: The two most severe psychiatric illnesses, ruling out progressive dementias, which is sort of their own category, are going to be schizophrenia and brittle bipolar disorder. We also see a lot of people with personality problems in the pathological sense, called Cluster B personality traits like borderline personality disorder, who can really suffer substantially, but they can usually be stabilized with the right therapy. Schizophrenia is a great challenge for anyone who suffers from it. I will also add that we see a lot of patients with substance use disorders, which either are comorbid with or overlap with other psychiatric phenomena like depression and anxiety.

SPENCER: You mentioned this idea of giving people housing that's kind of spread out, not all clustered together, and giving them day treatment. Would that be the same recommendation you'd have if they also have a substance use disorder?

JACOB: You'd have to modify it to some degree, but you want to get people to detox and rehab first. The principles are the same: having someplace you can go all day, every day, until you're more stable, ideally someplace that is separated from the people, places, and things that exposed you to substances or made you want to use substances in the first place. Then, obviously, having a stable home to return to makes it far easier to avoid falling off the wagon. Unfortunately, if you're living on the street or panhandling in front of a liquor store.

SPENCER: How effective are detox programs? Do they actually work to get people off of drugs and alcohol?

JACOB: The best answer is they are not that effective, but they're more effective than most other options. Some combination of detox, rehab, and AA, or some kind of similar communal program, along with certain medications like Vivitrol, are the best options we have. Obviously, they are not perfect, but it's sort of like Winston Churchill's view on democracy: it's the worst form of government except for all others. It's the same with substance use treatment.

SPENCER: How do you feel about AA? It's fascinating how popular it is and how much it has taken over in terms of addiction treatment. Many people swear by it; many people's lives have improved. But on the other hand, it's been harshly criticized for not being very scientific, for having a bit of a one-size-fits-all solution, and for involving spiritual elements that may not appeal to everyone.

JACOB: The best answer to that is, like most other interventions in psychiatry, it helps some of the people, some of the time, and the proof, as I say, is in the eating of the pudding. For those people who do connect with AA, whether it gives the spiritual aspects or the communal aspects, it can be extremely beneficial. Obviously, AA is not for everyone, and some people choose secular programs with similar principles, and some people need alternative treatments entirely. So it's not a one-size-fits-all solution, but AA offers one size for those people who want that particular fit.

SPENCER: You raised an intriguing idea that suicide prevention could be backfiring. What do you mean by that?

JACOB: So I think it's worth noting that prior to the 1970s and 80s, there was virtually no such thing as suicide liability in the United States. If your patient committed suicide and you were a psychiatrist, you weren't liable. Starting in the 1980s, for reasons we can talk about, psychiatrists started being held liable for patients who committed suicide, as a result of which we're over-cautiously hospitalizing people. Now, you might think that's a great thing. People are at risk, we hospitalize them, but if you hospitalize people who are not at high risk or over-hospitalize them and take their rights away, which is a particularly invasive process, then next time when they actually are suicidal, they'd be less likely to come to the hospital to get care and place them at greater risk.

SPENCER: And maybe not even tell their psychiatrist or therapist.

JACOB: Oh, absolutely. So unfortunately, it's again a visible, invisible victim problem. If your patient walks out of the hospital or jumps out a window, that will be front page headlines and your insurer will certainly not be pleased. Obviously, you will be deeply upset as well. On the other hand, the patient you admitted against their will, a year later, doesn't go to their psychiatrist and tell them their needs and jumps out a window. That would be just as tragic, but you'll never even know.

SPENCER: Because once they're under someone's care, that person's gonna get blamed. But if they're just sort of rejected out of the system, or they're not willing to engage with the system, nobody tracks that. It's tragic, but nobody sees that as someone's responsibility.

JACOB: Exactly. And there are two things to think about. One, we treat suicide in psychiatry differently from negative outcomes in medicine, even though the data is fairly similar. We know a certain percentage of patients with cancer are going to die, no matter how hard their oncologist works, and we know a certain percentage of patients with schizophrenia around the world commit suicide no matter what interventions we impose. Yet, in one case, we say the oncologist did a good job. We admire it. In the other case, we blame the psychiatrist.

SPENCER: Zero can't be the right rate, meaning that if you hold a psychiatrist to a rate of zero suicides, you're going to be imposing impossible standards on them, just like you would be if you said to an oncologist, you can never have a patient die.

JACOB: Exactly. The difference is there is science all over our hospital emergency room. The offices would say suicide rate zero, and that's sort of what's inculcated into people, that somehow they're morally or clinically responsible for this tragic outcome. Again, if you ask people in the community, would you rather your relative had a small risk of being discharged from the hospital and killing themselves now, or a much higher risk of being admitted but then killing themselves six months from now? Rationally, they would all choose the second option. And yet, our legal system and our medical legal system encourage the former choice.

SPENCER: We want to reduce the rate overall across all time, not just the rate when they're immediately under someone's care.

JACOB: Exactly, it's sort of like if you put up signs on bridges and put up tarps to keep people from jumping and they jump out of windows, you have not solved the problem. That's essentially what we're doing with over-admitting people.

SPENCER: So, what should you do if you have someone who's, let's say, maybe a little bit suicidal, but it actually is a pretty low risk of suicide?

JACOB: Well, I think the first step is, and I've written about this, suicide liability for psychiatrists should simply be eliminated. If you have not made a medical error, you should not be held accountable for a negative outcome in any way, morally, ethically, or legally. This way, psychiatrists would be free to make authentic judgments about whether or not they thought the patient was high enough risk to merit admission, rather than simply using any risk standard, or a standard where, if they had any critical fear for the patient, they admit them.

SPENCER: I assume that if they were grossly negligent, they'd still be penalized for that. You're just talking about if they were using a normal standard of care, they wouldn't be blamed.

JACOB: Exactly. So it's obvious if they give the patient the wrong medication, or they don't do a suicide assessment, or things like that, of course, you would hold them responsible. But if they simply make the judgment call that a patient is safe enough to leave, and it turns out they're not, which often results in liability today, that is not something that psychiatry should be held liable for.

SPENCER: Got it. And what else would you modify about the system to help suicidal people more on average?

JACOB: So the other thing is, I think you really want to empower patients more and be able to trust them more when they say, "I feel safe now leaving the hospital." Unfortunately now, we really put less credibility on the patient's own subjective feeling than we should. Sometimes the patient will be deceiving us and want to end their own life, but far more often, they'll be telling the truth, and they'll be a better judge of when they need their freedom restricted. Taking the chance on the few people who are deceiving us may help us save far more people in the long run.

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SPENCER: It seems like agency is a really tricky business here where, all else equal, we want to give people agency and respect their wishes. On the other hand, sometimes people are not in a state where they can make a good judgment for themselves. Many people who would commit suicide, if they just stuck it out, maybe they would have a happy life a year later and they'd recover, but in the deep throes of depression or in a manic episode they're coming off of, they can't see that.

JACOB: Yeah. I mean, it's also worth noting that psychiatric hospitals, no matter how well designed they are, are unpleasant places. They involve enormous restrictions on people's freedom. For example, in one hospital where I work, they wouldn't give the patients earplugs. Why? Because in another hospital, several years earlier, someone had swallowed an earplug in an attempt to commit suicide, the only documented case you could ever find in literature. Now to me, that kind of over-restriction to keep people from harming themselves may seem like safety protocol, but what it really does is keep people who might really want to be admitted to a hospital to feel better about themselves away because they don't want that level of restriction. What I like to say is, part of my thinking is psychiatry has shifted in the last 30 years away from its roots as a profession trying to help people with psychiatric illness that also happens to prevent harm to self and others, to a profession that primarily focuses on preventing harm to oneself and others that also, on the side, happens to try to help people with psychiatric illness, and I think that's a problem.

SPENCER: I don't know if you want to repeat this story, but I think you once told me about a blinking light that was bothering a patient that you couldn't get rid of. Do you remember?

JACOB: Oh, I can. I can tell you that story now because I no longer work at that hospital. I was at a hospital, I will not mention it, where a patient wasn't blinking. The patient had been diagnosed with a terminal condition and was obviously depressed as a result. I visited them as their consult psychiatrist and asked if there was anything I could do to make them feel better. They said, "Yes, the light over my bed has been on for, I believe it was four straight days, and I keep requesting that someone turn it off, but apparently it's broken, and they say they had to put in a work order to get it fixed." So I said, "We can stop that." I sent the medical student out at the time to get me a bed sheet. I think the medical student thought I was going to drape the bed sheet over the plastic-encased light. I wrapped the bed sheet around my fist and punched the light out as hard as I could. And it worked. I had lots of meetings and disciplinary consequences as a result, but it was still the right thing to do. So I think we need more outside-the-box thinking. The patient, by the way, thanked me.

SPENCER: Man, Jacob versus medical hierarchy and bureaucracy.

JACOB: I will add that punch is probably the only fight I ever won and the only punch I ever landed. So I'm proud of that too.

SPENCER: Wow. Now, which mental disorders are actually at the greatest risk of committing suicide?

JACOB: A number of disorders have very high rates of suicide risk. Obsessive-compulsive disorder has a high risk, body dysmorphic disorder, and psychotic disorders too. Psychotic disorders compounded with substance use raise your risk even higher. I don't have the exact data offhand, but all of them are substantial.

SPENCER: My understanding is that borderline personality disorder as well has a very high risk.

JACOB: Borderline and bipolar patients can be treated very effectively, but when they stop their medication, if they feel good, they find themselves at very high risk.

SPENCER: Usually during the manic phase or the depressive phase that they're at higher risk?

JACOB: Usually during the manic phase, but some people are at risk in both. I will add, by the way, it's also worth remembering that suicidality is an independent phenomenon from mental illness, but the two overlap greatly. There are some people, for example, who will suffer from depression who will never think about killing themselves, and others who have one episode of depression and will kill themselves, because there's clearly a heavy genetic component. There are families with suicide clearly running through them, such as the family of Ernest Hemingway, the family of Kurt Cobain, the family of Mary Todd Lincoln, and many other families out there who are not famous. So they are related, but not necessarily overlapping, not necessarily causative phenomena, which is why many of our medications that work against depression do not cure suicidality or treat suicidality. They just make you less depressed.

SPENCER: The standard view I've heard on suicide is that it tends to be impulsive. In other words, if someone's about to kill themselves, and you somehow caught them at that moment and stopped them, most of them would not then go do it later. Do you believe that's true?

JACOB: I don't believe that's true. I think a lot of them would not do it later, meaning they don't wake up the next day and do it. But having serious thoughts of a serious suicide attempt is actually highly indicative of another serious suicide attempt later on in life, or in a couple of years down the line. So you may be able to prevent people from killing themselves tomorrow, but that doesn't solve your overall problem.

SPENCER: Because you might not easily think, if they were going to do it today, why wouldn't they just do it tomorrow? That would be a rational actor model; if they're ready to kill themselves, they're going to do it. That's not really the case, but it's more like whatever predisposes them to want to kill themselves today is going to be an ongoing factor, most likely, unless it's dealt with. Therefore, in a year or two years or three years, it might still be at a very elevated risk.

JACOB: That's a perfect description. You should be a psychiatrist.

SPENCER: [laughs] Sounds like a tough job. I don't think I want that job.

JACOB: The great part about my job is it's easy in the sense I never have to run my business. Unfortunately, there are always people with psychiatric illness out there.

SPENCER: Oh, that's fair, and they're not a psychiatrist, so you've got to...

JACOB: Yeah. Anytime people join the club.

SPENCER: I'd be curious to hear your thoughts for a moment on psychiatry versus seeing a psychologist or therapist. I think a lot of people are confused about this. It's almost like, based on the luck of the draw, whichever you happen to see, you might get treated extremely differently for your mental health challenge.

JACOB: Yeah, I think the important thing to remember is psychiatrists and psychologists both have a lot to offer, but to a large degree, they offer very different services. It's like, if you go into a bank and you order a meal, they will not serve you. You need to go to a restaurant.

SPENCER: But the irony is that people don't necessarily understand that. It's sort of random which one they end up with.

JACOB: That is a very good point, and it's a problem. For many people with routine or run-of-the-mill mild to moderate psychiatric challenges, such as feeling depressed or anxious, which are obviously very serious conditions, they can often be managed with therapy, cognitive behavioral therapy, for example, or interpersonal therapy. For some individuals, particularly those with severe psychiatric impairment, medication is what they need, and some people need both. The current view is that for many conditions, particularly depression and anxiety, the ideal treatment is a combination of medication and psychotherapy. However, some scientific data suggest that the optimal goal is not necessarily having both, but rather that some people benefit from one and some people benefit from the other, but we don't know how to tell you which is which.

SPENCER: That's a little bit of an unfortunate situation.

JACOB: With brain scans, we can actually predict which is which; they're just extraordinarily expensive and haven't been operationalized.

SPENCER: Okay, so maybe in the future, we'll see that coming. So let's say someone has mild to moderate depression or anxiety, which is really common. Where should they start? Should they go to a therapist, or should they go to a psychiatrist?

JACOB: I think part of it depends on what their goal is. If they know they only want medication or they prefer to start medication, they should go to a psychiatrist. If they think they primarily want to start with psychotherapy or are resistant to medication, they should go to a psychologist. Most importantly, I think psychiatrists and psychologists both need to be willing to recognize, "This is something I do. Maybe this person also needs a therapist, also needs a psychiatrist," and good providers are willing to do that, and they often share patients. Unfortunately, some providers don't share patients. I will add some psychiatrists, though fewer will offer both psychotherapy and medication. Unfortunately, most of those psychiatrists charge a lot of money.

SPENCER: Yeah, and therapists too charge a lot of money. At least in the New York area, I think most of the best ones don't take insurance, unfortunately, and they're quite expensive, which is an interesting situation to be in.

JACOB: Absolutely. Again, it's a classic battle with market demand. That's the absolute supply.

SPENCER: What about with conditions like bipolar and schizophrenia? My understanding is that medication pretty much needs to be a part of the treatment program. Is that right?

JACOB: Absolutely. That does not mean there's not a role for psychology, for social services, for a range of other interventions, but you really do need medication as well.

SPENCER: Shifting topics, genetic medicine, now that we have inexpensive DNA testing and so on, seems poised to have a big impact on medicine as a whole. Would you agree with that?

JACOB: Absolutely, we are on the cusp of a major revolution, for better or for worse.

SPENCER: What do you see as some of the exciting things there, and then also, what are some of the concerns you have?

JACOB: I think the exciting things and the concerns are really two sides of the same coin. The exciting aspect is that we are actually going to be able to pinpoint the specific genetic causes, not just of disorders we already know are caused by one genetic mutation, like cystic fibrosis or sickle cell disease, but also to be able to break down what are currently syndromes like schizophrenia or bipolar disorder into a thousand different specific diseases, which is pretty amazing. We can focus treatments in a personalized way. That's the good part. The bad part is we know from drugs currently on the market, like this old genzema for spinal muscular atrophy, which retails at, I think, $2.25 million per dose, or hemgenics, which now retails for over $3 million per dose, that treating these pinpoint disorders is going to be extremely expensive. Right now, we can do it for a handful of diseases, but the genetic revolution will let us do it for thousands of diseases if we are willing and able to spend the trillions of dollars as a society to do it. The really bad news is if we spend trillions of dollars on treating these diseases and conditions, we will have no money to spend on anything else as a society, which leads us to the ethical challenge we will have to choose between treating and not treating diseases that we know we can treat.

SPENCER: Do you think that market forces will solve this to some degree, or is this something that's sort of existing outside of market forces? Because normally, if you said, "Oh, well, there's this abundance of different things that people want, all these different products," people have finite money, and so they'll just decide which ones they want to buy the most. The market will somehow do its magic, and some will get bought, and some won't, and prices will fall.

JACOB: There may be a few cases where market forces will drive this. If a billionaire's child develops these disorders, there may be additional funding to generate a particular product. For example, there's been at least one drug that was developed for one specific individual with a very rare form of patent. On the other hand, because of the overarching nature of how much these will cost and how much the startup costs to do it, most people will not be able to buy these out of pocket, and the market simply won't drive it. Rather, social forces, political forces, government agencies, or some outside entity will have to make the decision about which diseases we are curing and which diseases we are not curing.

SPENCER: I see because essentially what's going to be happening is insurance companies will be paying for the medicine, and then it's a question of what are they covering? That effectively exists outside the market. Force is the determination of what they cover.

JACOB: Exactly. Realistically, the number of people out there who can afford a medication that costs $3 million per dose is just too small to drive the market for 9,000 different disorders.

SPENCER: Will these kinds of technologies be able to target disorders that are caused by multiple genes at a time, or is it really going to be limited to sort of single gene mutations?

JACOB: The theory with the combination of the genetic revolution and artificial intelligence is we will be able to target multifactorial genetics. We know, for example, that a condition like schizophrenia is not a disease. It is a syndrome with multiple different genetic and epigenetic phenomena that overlap to create different types of a disease that look similar, which I will add, by the way, is what many medical conditions looked like a generation ago. So a hundred years ago, the different types of kidney disease we know today as nephrotic syndrome were all known as Bright's Disease, which they couldn't tell apart. That's where we are with schizophrenia today. Once we can tell them apart, we may be able to target the different polygenetic origins of a particular type and cure it. We're going to cure all thousands of types that will cost a lot.

SPENCER: What does carrying it actually mean? Does it mean injecting a virus that modifies a person's genome in their living body?

JACOB: That's really a virus, but it may be one of many different types of gene therapy. It may actually change the genetic makeup of the individual, whether that will be changing the germline or changing the body cells. There are going to be lots of different ways to do it, and there already are lots of different ways we know how to do it. Sometimes it will involve inserting a virus through another mutated pathogen to do it, but that's not the only way. All of these methods are going to be costly.

SPENCER: So how do you think society should make determinations like this? Of, "Okay, which of these are we actually going to treat? Which of them are insurance companies going to cover?"

JACOB: I think the most important thing we need to do is decide in advance how we're going to do it, because if we decide in advance how we're going to do it, we do it rationally and we stick to our rules. "This is our policy. This is what we're going to spend." At least it's an equitable system. What I really fear is that we do it in a haphazard way, which results in poor choices economically, so we don't save or cure as many people as we can, and certain groups of people come out ahead while others come out behind. You can already see this phenomenon in practice today, in the amount of money we spend, the amount of research we do on cystic fibrosis, a disease that is perceived, though not entirely, to affect white Northern Europeans, and sickle cell disease, which is perceived, though not entirely, to only affect African Americans. Even though sickle cell disease is far more socially costly in terms of lives lost and in terms of quality-adjusted life years, we spend tons more money, both publicly and privately, on cystic fibrosis.

SPENCER: And how are those decisions actually made in practice, who's deciding that?

JACOB: To some degree, the National Institutes of Health decides which grants to fund. To some degree, pharmaceutical companies decide which products they're going to develop, which is factored in part by which ones they think pharmaceutical companies are willing to pay for and who has the social capital in society to pressure pharmaceutical companies and insurers to cover certain medications. So it's a complex political process.

SPENCER: So when you ask questions like, "Okay, how should we make these decisions? What is the right way to do it?" What are the actual levers we have? It seems like now it's made by these different government agencies. Most people might feel like, "Well, it doesn't really matter what we say about it. At the end of the day, some kind of obscure process is going to happen."

JACOB: Sure. So part of this involves some degree of centralization. You'll see, for example, in Great Britain, some decisions are made in terms of what medications to cover by the National Health Service. Some decisions about which procedures are available are made by various boards. For example, there are certain reproductive and genetic procedures you simply cannot obtain in Great Britain because the governing bodies consider them unethical or having negative social implications. We really don't have that in the United States, but we may have to shift in that direction. As these challenges arise, we may see a response to the genetic and AI revolutions of more centralized decision-making in terms of the allocation of resources.

SPENCER: How do you feel about cost-effectiveness as a framework for making these decisions? Saying, "Okay, this drug would affect this many people. Here's how much suffering this disease causes. We can do an expected value calculation on that, disability-adjusted life years, and those are the ones we're willing to fund, the ones that have the best cost effectiveness."

JACOB: In principle, you want to have a rational method. The concept of cost-effectiveness is a very valuable one. However, you have to decide what you mean by cost-effective, because one thing to think about is to what degree you consider underlying equity in cost-effectiveness. Some people in society are already shortchanged. For example, when you allocate ventilators for COVID, you could just look at people as they are right now, who is most likely to survive COVID or who is most likely to live a long life after we provide it. But you could think, some people are more likely to get a ventilator because social structures kept them from seeing a primary care doctor for 30 years, so their blood pressure is higher. How do we factor that? While cost-effectiveness is good in theory, parsing what it means becomes much more challenging.

SPENCER: It sounds like you're suggesting there may be a fairness element too that you could incorporate, in addition to just saying straight up cost effectiveness; you want to make things more fair at the same time.

JACOB: Yes, but exactly what both of those mean is very challenging. Also, when you say cost-effective, do you mean cost-effective in terms of saving the most lives tomorrow or saving the most lives overall? How do you compare the value of a life tomorrow versus a life in 17 years? It's not easy to answer that.

SPENCER: How do you think we should even try to approach questions like that?

JACOB: The two important things to do, I mentioned one of them, which is making these decisions in advance. But the other one is, we really need to involve a wide range of stakeholders and get a wide range of points of view. I think most of the major medical ethics tragedies in the United States, at least in modern times, have resulted from people who did not mean harm. They meant to do well. They only had one point of view or one skewed set of views. The obvious example that jumps out at many people is the so-called "God committee" at Swedish Hospital in Seattle that was allocating early dialysis machines based on their perception of "social worth". They had no idea how skewed their perception of social worth was until Life magazine recorded their hearings and published the transcripts, and the public was horrified.

SPENCER: How were they actually making those decisions?

JACOB: I urge everybody to read the transcripts, but their conversations include things like, "Well, would an attractive widow with three children have a better or lower chance of remarrying and leading a productive life for kids than a less attractive widow with six children? Would somebody who is more active in their church be more deserving if they're leading a socially valuable life, or less needed because they're clearly more adjusted to preparing for the afterlife, and therefore they won't cause as much tragedy and loss when they die?" Obviously, some of those discussions seem absurd to us today or even horrific, but they had no outside perspective from people with different views to shape their thinking.

SPENCER: Is the reason, fundamentally, that you recommend having multiple stakeholders, so that a larger array of values gets incorporated in the final decision-making.

JACOB: You want to think about a larger range of values. You also want to prevent groupthink and make sure people see blind spots. Often, people will think they're doing the right thing until you point out to them the consequences, side effects, or downstream implications, and they'll suddenly realize that's not what I intend to happen at all. So part of it is underlying values, but part of it is simply about people recognizing when they're not achieving their own values and their own goals.

SPENCER: Changing topics, again, you mentioned very briefly before this phrase invisible victims. What's an invisible victim? And why should we care about that?

JACOB: So visible victims are people who, if you deny them health care, know they're being denied health care. So let us say the state of New York, where I live, decided they were not going to pay for lung transplants for people who had lung cancer, which they're not cost-effective. People denied lung transplants would know that. They know that if they die, they've been denied something. They're a visible victim. If we don't pay for smoking cessation programs and people die of lung cancer 25 years from now, they don't think of themselves as victims in the same way; they are invisible.

SPENCER: What is the impact of that?

JACOB: So our system — I would argue, unfortunately — is skewed from providing care for visible victims at all costs, at the expense of invisible victims, even when some minor shifting allocation can lead to a few losses of life or increased morbidity among visible victims. But a trade-off saving many lives for invisible victims over the long run. So you're actually allocating healthcare irrationally based on who is in front of you, rather than the overall need.

SPENCER: This reminds me of a problem that seems broader in society, where there'll be something that a small number of people want a lot, let's say, some pork belly regulation that benefits people who make airplanes or something like this, they get a lot of benefits, so they'll fight really hard for that, and it costs everyone else just a few pennies. So nobody really resists it very hard. And so you end up with a lot of strange regulation that is just sort of designed to benefit the people that really care about that thing.

JACOB: Oh, absolutely. Anybody who wants to do a deep dive into this, read about the Onion Futures Regulation Act of the early 1950s. It is, by the way, illegal to sell onion futures, in case any of you were ever thinking of doing it. But I mention that only because some of the implications of this are truly absurd. And sometimes we spend millions of dollars on one patient who has a very poor prognosis, and everybody knows that, including the patient, when that same money could be spent on a thousand mammograms or ten thousand flu shots, and we know how many lives that will save over the course of five or 10 years. It is, unfortunately, a zero-sum game in healthcare, and a priority most people looking at the situation would choose to save thousands of lives from mammograms and flu shots. On the other hand, the person who wants that particular million-dollar treatment at the moment is right in front of us, and their demand is louder at the moment.

SPENCER: So is there any solution to the invisible victim problem, or is it just one of these fundamental things that can't really be resolved?

JACOB: People have made some headway in addressing this. One great example is the Oregon healthcare plan in Oregon, where John Kitzhaber, who was the governor in the 1990s and a former emergency room physician, basically said, "We're going to reallocate some funding from the poorest of the poor to working-class people who can't afford health insurance, and cover more people under Medicaid for lots of things that we know will save lives at the expense of not providing very expensive care for a small number of patients." It was fairly unpopular and met with a lot of pushback, but it did succeed, and looking at it in hindsight, it seems to have worked. I will add, however, that Arizona and Massachusetts tried even smaller programs. More recently, both of them were met with angry pushback from the visible victims, and the governors or the State House backtracked.

SPENCER: So it might be politically unpalatable, but if someone plans it in advance and actually explains the rationale, there are examples where they were able to get it through.

JACOB: It's certainly not politically popular, but somebody with a lot of will and real commitment can make it work, sometimes. I unfortunately think — I hate to say this — but there are politicians out there who take advantage of invisible victims and make them cause célèbres to undermine the system for their own benefit, which I find deeply disturbing.

SPENCER: Do you have an example of that?

JACOB: Sure. I think the whole debate over death panels that we saw about 15 to 20 years ago in the context of the Affordable Care Act was not simply misguided because it created the sense of people wanting patients to die, but it really cherry-picked high-profile cases that were not representative of how healthcare would play out. I also will say, from what we know, the case of the current vice president's cousin, JD Vance's cousin, needs a heart transplant but doesn't want a vaccination, is a classic example of visible and invisible victims, because the media has focused on this one young girl, who I feel very badly for, who may not get a transplant, but it's not focused on whoever the child is with a higher likelihood of survival, who would get a transplant if she doesn't.

SPENCER: Right, because if you saw that child too, you'd feel as bad, or even worse for that child. So it would balance out the sort of salience effect.

JACOB: Yeah. Another example from the pandemic, there was an individual who turned down an opportunity to get vaccinated for COVID and then needed a double lung transplant and got two lungs, which is a wonderful human interest story, and I'm happy he survived. But nobody talked about the two other lung patients with diseases of cystic fibrosis or idiopathic pulmonary fibrosis, who didn't get lung transplants as a result, and who died; they were the invisible victims.

SPENCER: You mentioned the Affordable Care Act. What do you think the real effect was on patients? Do you think it actually ended up improving patient outcomes, or not so much?

JACOB: I think it made an enormous difference. I think it definitely improved patient outcomes. I'm not saying it's the ideal solution, and I'm not a healthcare economist; I'm sure there are ways of doing it better, but we're certainly better off now than we were before it happened, not just in terms of the care it affords, but also keeping in mind the care it prevents. People who get care as outpatients won't then need inpatient care, and we often don't really appreciate those savings when we look at this in that economic analysis.

SPENCER: So what were the mechanisms by which it improved outcomes that you see?

JACOB: It's simply that more people have a way of obtaining insurance. There was a wide swath of individuals who were too well off for Medicaid but simply could not afford insurance on the traditional private market, and this gave them a low-cost method of obtaining insurance.

SPENCER: Were you seeing patients like that without insurance prior to Obamacare, and they were just coming in for emergency care?

JACOB: New York is a bit of an outlier because there were other options for many of these patients. Psychiatric illness is a bit of an outlier because there are some other options. But even in that context, there were many patients who simply were foregoing care that they couldn't afford.

SPENCER: Often when people talk about medical funds not being spent very well, they talk about end-of-life care. How tons of money goes into end-of-life care, and the outcomes are not very good. Now, I think some of that might be due to statistical artifacts. In order to be defined as end-of-life care, the person has to die, and so, of course, it didn't work very well because retroactively, the person died. Otherwise, we wouldn't even call it end-of-life care, but I'm curious, to what extent do you think we're sinking a lot of money into end-of-life care that's really not effective, and we'd be much better off using the funds on, let's say, preventive care or other sources of trying to help people.

JACOB: I think you underestimate the artifactual impact. Because if I asked your audience, everybody who has less than six months of life, raise your hand. Now I imagine far fewer people would raise their hand than, unfortunately, people who actually do have less than six months of life, because I don't know if it's still true, but there was a time not that long ago when if you typed Lou Gehrig's Disease prognosis into the internet, which is probably the first thing I would do if I were diagnosed with ALS or motor neuron disease, the first picture that came up was not that of Lou Gehrig, the famous baseball player for whom the disease is named, who died of it, but Stephen Hawking, the physicist, astronomer, thinker, who lived for many, many years, far longer than the average life expectancy with the same condition. So you don't really want to tell a patient, "We know that statistically, your odds of surviving are extraordinarily low, but some people have lived much longer." You do want to tell them that, but that gives them hope. Might their hope be false? Sure. But who am I to deny people's hope once I give them facts.

SPENCER: To what extent do you think that research is being misused in end-of-life care, when, in fact, there's very little that can be done in these situations?

JACOB: I mean, the best answer is it's highly unpredictable because we don't know you're dead until you're dead. Many people have a pretty good sense that your survival rate is going to be very low or zero, but I can tell you, in my own practice, I've been surprised. I've had at least one patient who I was, I would say, in all fairness, 100% sure would be dead in six months. And now it's 20 years later, and my understanding is I haven't seen them in a while. They're absolutely fine. They had a degenerative cardiac condition, and I know people socially who had cancers that were considered untreatable until new immunotherapies entered the market. They received the treatments within months of the new treatments becoming available, and they're alive many years later. So it's somewhat unpredictable. I think the larger question you're driving at is, do we spend too much money on clinical care as a whole versus preventive care? And there's a much stronger argument for that.

SPENCER: So obviously you don't know for sure that something is end-of-life care until eventually the person dies. But there are situations where you can throw lots of resources into a patient that seems to have a very, very low probability of success, but you don't see that as a major flaw right now in the healthcare system, not necessarily.

JACOB: I will also emphasize, I think the mistake is we often talk about it in terms of end-of-life care. Many of those patients, we know, are going to live many, many years, but they still cost a fortune.

SPENCER: I see, so there's a broader problem of lack of cost-effective care, rather than end-of-life care, per se.

JACOB: Exactly. There are people with conditions that are going to cost a million dollars a month to treat, but they could live decades with those conditions. How do we balance their needs against flu shots, mammograms? To me, that's a much harder question, but a much better way to frame.

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SPENCER: Regarding preventative care, obviously society would be healthier if people ate healthier and exercised more, but everyone kind of knows that, and people struggle to do it, and it's not necessarily easy for a doctor to make any impact on that. The doctor can say, "Yeah, it would be great if you started eating healthier and exercising more," but most patients won't take their doctor's advice. So how do you see preventative care fitting into the medical system? I think it's important.

JACOB: It's important to remember that it's not that most people won't follow their doctor's advice. Some people will follow their doctor's advice. A lot of people can't follow their doctor's advice.

SPENCER: Fair. Yeah.

JACOB: So if you go to certain neighborhoods in New York City, you go to East New York, you go to Morrisania, and you try to find fresh produce in your grocery market, you will get your week's exercise in walking from grocery to grocery until you can find it. That is a structural problem that you can't expect someone with very limited social capital trying to take care of their kids to resolve. That is something that society has to be able to address in a larger way. It's easy to say you should exercise. It's harder to say you should exercise when you're working 18 hours a day, including on the night shift, doing piece work in a factory. A lot of these forces are far beyond the control of individual patients, and often I have patients say that point blank to my face. Certainly, when I was working in the clinic, patients would say, "I really appreciate what you're saying. I'm going to try to do it. But this factor is going to be a barrier," and the factors that were barriers seem pretty convincing to me.

SPENCER: That makes sense. So then, how can medicine adopt more effective preventative practices?

JACOB: Sure. So I think we need to integrate into communities more and help solve, to some degree, these issues. Rather than saying to the patient, for example, "You should eat more produce," I should say, "We have a food pantry in our building. We will give you fresh fruit for your family for a month." That makes a huge difference. We have a program at our hospital where, for certain patients, we are able to give them food in certain circumstances. I do think it makes a difference.

SPENCER: You also mentioned mammograms earlier, and this is an interesting debate in society where we now have the ability to test for all kinds of diseases. You can do prostate cancer screening, you can do mammograms, et cetera. There's been this disagreement over how cost-effective these approaches really are. Do they just produce a lot of false positives, a lot of things that really would have been fine, or are they really catching disease early and saving people's lives? What's the trade-off?

JACOB: Yeah, so again, the way to think about it is what you mean by cost-effectiveness. We could take something even more concrete and more expensive than a mammogram; we could take, let's say, doing a brain MRI for an aneurysm. If you come into the hospital with the worst headache of your life — a thunderclap headache — they will give you an MRI of your brain. If you do have an aneurysm, they will probably repair it, coil, or some kind of surgery. On the other hand, if you come to the hospital just for your regular routine checkup, and an MRI costs a certain number of thousands of dollars, they will not give you an MRI of your brain every year, even though the risks of doing so are very low because the costs are extraordinarily high. On the other hand, we could probably prevent a number of aneurysm deaths each year if we screened everybody at a cost of many billions of dollars. We don't do that; you might say that's not cost-effective. I can assure you that if you're the person who dies of an aneurysm, or one of your relatives did, you would think that was cost-effective. In some sense, it's cost-effective after the fact and not before the fact. How we decide which of these procedures to do and which not to do is really no normative metric, it's really, at some point, a value judgment.

SPENCER: I agree that it's a value judgment, but surely you could say, "Well, screening every random patient for brain aneurysm, there are probably much better things we could do than that that are strictly better." If you're going to screen them for something, that's probably not your first choice, given the cost and the likelihood of them having an aneurysm.

JACOB: So just off the top of my head, I imagine that we could take a certain percentage of money that people spend on some leisure activity — and it doesn't really matter what it is, whether it's sporting events, football games, opera, or video games. I want to be completely nonjudgmental about what the activity is — and spend it on aneurysms, and people would live longer as a result. So is that cost-effective or not cost-effective?

SPENCER: Well, I think that's really a value judgment, right, that example?

JACOB: Yeah. I personally would much rather live longer and have access to fewer video games up to a point. That point probably differs for different people. So I think any effort to try to put a value judgment on these diagnostic tests and what budget you cull from is much harder than people think it adds up.

SPENCER: Would it be fair to say, though, that for a fixed set of values, if you decide what values you're optimizing for, then some tests are going to be more cost-effective on that set of values than other tests?

JACOB: Oh, absolutely, that's a given.

SPENCER: So if you're saying, "Okay, all we care about is preventing death. Some screenings are just not going to be very good compared to other screenings on deaths prevented per dollar. And maybe MRIs are not that good for your brain, but maybe mammograms are better, etc."

JACOB: Yeah. So if you want to use simply mortality or quality-adjusted life years, whatever metrics you can, you can simply triage and stratify these different interventions and draw a cutoff, which is basically what the Oregon healthcare plan did. It decided there were 692 different things that medicine could do, and that 492 of them in their first year were cost-effective and two of them were not cost-effective.

SPENCER: Do you think there are things that we should be screening for because of really low cost and high value that we don't screen for right now?

JACOB: To be candid, I'm not the expert on healthcare economics to tell you if there are things out there in general medicine that we're not screening for. I can say that in psychiatry, it's less about cost and more simply about reminding people to do it. So something as simple as screening for suicidality or screening for depression at every well patient visit is an enormous payoff at virtually no cost. Yet, a lot of providers don't do it.

SPENCER: Recently, there's been a little bit of a debate around suicide screening. About whether asking, let's say, teenagers about their suicidality every time they go to the doctor does that somehow put the idea in their head, or is that somehow harmful to them to get that questioning? What do you think about that?

JACOB: I honestly think that is deeply misguided. There's really no convincing data that mentioning suicide in the screening puts the idea in the heads of people who are not already suicidal, at least people above a certain age. I can't speak to four-year-olds or five-year-olds who may have a different conception of death that's outside my field of expertise. Everything we know about suicide suggests that some people are at risk of suicide and some people are not at risk of suicide. If you put the idea in the head of someone, no matter how depressed they are, who is not at risk of suicide, they're not going to do it. And if you put the idea in the head of someone who's already thinking about it, they're already thinking about it.

SPENCER: Before we wrap up, I was thinking it might be fun if I ask you about a bunch of bioethics challenges and get your quick take in a lightning round. How does that sound?

JACOB: I'll give it my best shot.

SPENCER: Awesome, because you are an active bioethicist as well, right?

JACOB: At least a passive one, but yes.

SPENCER: Okay, got it.

JACOB: I was going to say, if you asked me about trolleys, the answer is, I have no idea. There are an infinite number of permutations, none of which resolve the dilemma.

SPENCER: I wasn't gonna go to the trolley problem, so you're safe there. So, body integrity disorder, what is that and how should doctors deal with that?

JACOB: Sure. So body integrity disorder, which I think there's increasing consensus is different from body dysmorphic disorder, is when people believe that certain parts of their body aren't integral to their body. In the same way that people who are transgender may say they were born into the wrong body, people who have what might be called apotemnophilia believe that their lower left leg, for example, is not part of their body. And some data suggests that this harm reduction, allowing people to remove those non-organic limbs, actually reduces their likelihood of trying to remove them on their own, resulting in higher rates of death. So I think it's something that we as physicians don't know that much about, but we really need to learn more from patients about it. I'm not someone who automatically thinks this is something we shouldn't do or something we shouldn't help people with. I certainly don't think it's psychiatric. I think it's neurologic for many people.

SPENCER: Because many people would recoil and say, of course, a doctor should not help this person remove their healthy limb.

JACOB: If you had a rotten tooth, your dentist would help you remove it because it causes you pain and distress. If someone's lower left leg causes them extraordinary pain and distress to breathe, that they can't function, and some evidence shows that if you remove it, they can be a healthy functioning individual, I'm not sure why we wouldn't do that. Obviously, if you take this to the extreme, picture someone who wants all of their extremities cut off. There is a level of extremism, but the reality shows that it's not what people are asking.

SPENCER: And maybe one day there'll be a technology where you could help do something in the brain, where they no longer had this feeling their limb was not part of them. But if we don't have that technology, we don't have that many options to help.

JACOB: Yeah, exactly. It's how do you balance the potential for a future cure against current existential suffering. And the answer is, for no other condition, or no other mainstream condition, do we impose that trade-off on people. We don't say we might have a cure someday, so you have to keep trying to take chemotherapy, even if you're suffering.

SPENCER: We talked earlier, very briefly, about prejudice against people with mental health challenges. If you think about prejudice in society, most prejudice is really not acceptable, according to most people; they will judge you really harshly for it. But there are some prejudices people seem much more okay with having, and one of them, I think, is against ugliness. People are kind of okay with being against people that are unattractive. What do you think about that?

JACOB: Very true, and I think there's lots of data to show that if you deviate from the official or accepted standards of beauty, according to scientific data and cultural data, you are treated differently, not just in the dating market, but in the job market and social opportunity market, and that's deeply problematic. How to solve that problem is challenging, but that does not mean it's not a problem.

SPENCER: I find it so funny to think that we have these fleshy bits on our face that determine so much of how good-looking people consider us to be that are non-functional. It's one thing to be strong; at least if you're strong, you can do stuff. But the look of our face is actually essentially completely arbitrary, and yet it determines so much of how people view us.

JACOB: Yeah. I imagine it has some evolutionarily biological benefit. Historically, it's how cave people decide who to mate with based on their health predictions. Some of it may also be artifactual, but it certainly has no practical bearing on how we live today. Yet people are irrational. It's also worth noting that, although I know there's some data on universal standards of beauty that is convincing up to some point, people's beauty standards vary greatly. In 17th Century Great Britain, having a long neck after Princess Charlotte was desirable, whereas people who look like giraffes today are not considered particularly attractive.

SPENCER: Have you ever seen those illusions where, no matter how much you know how the illusion works, it doesn't matter; the illusion is still right there in front of you? I think facial attractiveness is like that. You could be like, "Oh, I know it's just arbitrary. This person's not good looking and this person's good looking because of arbitrary bumps in their face or facial structure," and yet you still feel differently about them on a very gut level that's hard to overcome.

JACOB: It's probably hardwired into us in early childhood, or at least softwired into us. What you said just reminds me of my critique of psychodynamics, which is that psychodynamic therapies often believe that insight will lead to change, but just because you understand why you're depressed doesn't make you less depressed. Sometimes insight can lead to change, but often insight does not lead to change, and I think this is a classic example of that.

SPENCER: Now, you don't hear a lot of people defending polygamy, but I'm curious what your thoughts are. Do you think that polygamy is defensible?

JACOB: In a moral sense? Absolutely. I will put out there upfront that I understand there are certain logistical challenges to polygamy. If I want to marry all the people in Salt Lake City, that would create a problem for the Social Security Administration. However, up to at least a certain point, where you're doing it out of genuine affection and not for economic fraud, I see absolutely no problem with polygamy. Grown adults should be able to make whatever social choices they wish to make about who they work with and who they sleep with. Just because somebody in a Bible or other religious text several thousand years ago looked down upon something doesn't mean there's something wrong with it.

SPENCER: I assume you feel the same way about a woman who wants to have multiple husbands.

JACOB: Oh, yeah, unless I'm one of them, in which case it sounds like too much work. But in general, I feel people should be able to make whatever social arrangements they want.

SPENCER: I guess there's the legal question of, let's say someone married multiple people. How is that going to be handled on a legal basis? Who has visitation rights? How is money divided and all kinds of things like that? But then there's just the question of, should they even be allowed to have the marriage certificate in the first place?

JACOB: Yeah. I have no problem with the second. I think the first is a solvable problem. I'm sure that for all the other challenges, there are specific aspects of polygamy and its gender-based nature. 19th century Mormons were able to work out all the details of legal obligation and contracts and facts of that sort. So I'm sure that can be worked out. In general, I'm just not troubled by consenting adults engaging in consensual behavior. There was a time when cohabiting with someone who was not your spouse was considered a crime in the United States, crimes like criminal conversation, which now seems absurd.

SPENCER: How do you think about interfacing with the history of things like polygamy? It seems like in many cultures where it was practiced, it was situations where women had very little power. There were weird structural dynamics, and maybe it wasn't good for women. Maybe there were cases where it was good for women too, but I think it's complicated. Do you think about it as, "Oh well, in the abstract, it's fine even though there were cases where it was bad, we should still talk about it being okay and acceptable?"

JACOB: People often raise the objection. I will point out to them that any of the power dynamics and historical trends they can mention that relate to polygamy can also be applied to heterosexual marriage, which historically was a male-dominated property arrangement in which women had no rights.

SPENCER: So you're saying, basically, if we're going to apply that standard, we should be applying it to marriage as well.

JACOB: Yeah. It applies to all. All marriage, historically, at least in Western culture, the same problems apply historically.

SPENCER: How do you feel about assisted suicide? If someone wants to end their own life, should they be able to do so with the help of a doctor?

JACOB: Sure. So I think the preferred term now is medical aid in dying. But absolutely, I really feel that people who have capacity, which is an area I write about, meaning they understand what they're getting into, should be able to terminate their life when they want to do so.

SPENCER: Do you think there should be limits on that? Should someone be able to just make that decision the day of?

JACOB: No. I think you want to have certain safeguards that we all, including people who may deeply believe in medical aid in dying, would agree to. For example, I think many of us, if we were intoxicated and wanted to jump out a window, would want people to wait until we became sober. I think if your prom date breaks up with you and you're 18, and you take a bunch of Tylenol, you come to the ER and don't want your stomach pumped, and you say you want to live a long, full life, we should overrule that. On the other hand, if you're saying the exact same thing a month later, we should give it more credence.

SPENCER: I know that some people have religious grounds to be opposed to this kind of action by a doctor, but for someone who doesn't have a religious objection, I do have a bit of trouble getting into their mindset. If they've ever had a loved one who was just tremendously suffering, who essentially had no chance of ever recovering, didn't want to be alive and could be stuck in that state for years, it is quite difficult for me to see why someone would oppose them deciding to end their own life in that situation.

JACOB: I can offer some of the arguments I hear, and I can also offer why I don't think they're persuasive. The most common one you hear is an equity concern, that people who have less social capital or less economic power, or come from historically marginalized racial or ethnic groups, will be driven to end their own lives not out of autonomous choice, but under implicit duress because of resource limitations. On the other hand, so far, the data we have is that people who choose medical aid in dying tend to be much more well-off than the general population and have much more social capital. So that is certainly one concern you hear a lot. Another concern you often hear is that people are acting out of fear, that they're afraid of pain they're going to suffer in the future, and they simply are misinformed about the options palliative care has to offer. But the solution to that is to educate people more accurately about palliative care. It's also worth noting that many of the people who benefit from legalized medical aid in dying never actually choose it; simply the fact that this conversation with patients before, simply the fact that knowing it's an option for them, knowing there is always a last resort means they don't need to choose it, and they feel comfort and relief.

SPENCER: Do you think doctors are too willing to resuscitate that they basically end up extending people's lives in a way that's not valuable to the patient?

JACOB: Well, I think we should always defer to the wishes of the patient. I'm a big believer in patient autonomy, and that's why I actually think that we should have a system that strongly encourages everybody to fill out an Advanced Directive, either a living will or appointing a healthcare proxy. I think people should stress these values with their family, and we should honor their wishes as expressed or effectuated through their family or their loved ones as well. I think the harder question is what we should do in situations where we don't have family who can tell us anything about the patient's wishes, we don't know what the patient's wishes are, and the patient has a very poor prognosis. I do think there should be some limit on when we choose to revive people in that situation; probably when based on what the situation the majority of people would want to be revived and kept alive in.

SPENCER: How is that decision made now?

JACOB: Unfortunately, the default now is to keep you at all cost unless you tell them the contrary.

SPENCER: And sometimes that means basically putting you in a very miserable situation where you have essentially no quality of life, right?

JACOB: Exactly, even if there's no reason to believe that's what you would have wanted, unless we have reason to overtly believe that's not what you would have wanted, which is what I'm not so sure about. I'm not sure the default should always be assuming you would want more care.

SPENCER: The final thing I want to ask you about is there was a documentary made about you called Jacob. What was that experience like of having a documentary made about you?

JACOB: It was a strange experience because I am not a particularly important person, and someone who I knew very, very casually, a very nice guy, called me out of the blue and said, "Do you want to have a documentary made about your work?" I figured it would take four hours of filming, and I think something like 130 hours later, it was a much longer process. It was done, and I've actually not seen the documentary. I've heard pieces about it.

SPENCER: Wait, you've never seen it?

JACOB: Oh no. The last thing I need to do is know what people I know are saying about me in the documentary. The last thing I want to know is what people I know socially and care about think about me. I want to know what they tell me, not what they told the world.

SPENCER: Are you worried they're going to say something bad about you, or say something good? What's the concern?

JACOB: Either or neither, just something personal that I don't need to know because I value my current relationship with them, not some sort of artificial relationship presented to the world. People often say things on tape they don't mean in certain ways, but more importantly than that, I feel like there are topics worthy of documentaries. There's lots of suffering and human rights violations across the world, and I'm just not so convinced that was really one of them. That being said, if you want to squander 46 minutes, it's out there somewhere.

SPENCER: That's really funny. It reminds me of the tagline of the documentary, which is, "In this upbeat documentary, meet the most prolific, most accomplished, least boastful person in America." I think your response fits that pretty well. But Jacob, thank you so much for coming out. It's really great to chat with you.

JACOB: It's my absolute pleasure. Be well, stay safe, happy to be back anytime.

[outro]

JOSH: A listener asks: "How do you think X has changed since Musk took it over?"

SPENCER: My anecdotal experience as someone who posts a lot on it is that, on the one hand, a bunch of progressives left Twitter, which I think is a shame, and I think it would be a better place if they had stayed. On the other hand, more conservatives have come, and so it's definitely shifted rightward, on average. I don't think it's necessarily bad to have more conservatives there. I would rather it be a vibrant place that has all kinds of people there. However, I also think that there are certain kinds of hate speech that are more accepted now. After Musk took it over, it was the first time I ever had people say truly atrocious things to me that were really beyond the pale. I had never had that happen on Twitter. Yes, people are jerks, but this was on the level of real hate speech being said to me. That was a new experience. I think they definitely allow more kinds of speech, and there are benefits and harms to that. The harm is that people can say horrible hate speech and get away with it. The benefits are that when platforms try to censor, sometimes they censor stuff that probably shouldn't be censored. I also know people who have said reasonable things and been censured for those, so I really think it's a mixed bag. But overall, it feels more chaotic to me. I don't prefer it, but I also think there's still a lot of interesting things going on there.