Ethics and emotions often clash at the bedside of terminally ill patients—especially those with brain injuries. Dr. Joseph Fins, Chief of Medical Ethics at Weill Cornell Medicine, talks with Dr. Stieg about what we can do to best prepare for our final days and who has the legal and moral authority to make life and death decisions.
Dr. Stieg: I’m delighted to have with me Dr. Joe Fins. Joe is the Chief of Medical Ethics and Professor of Medicine at Weill Cornell Medical College/NewYork-Presbyterian Hospital. He serves as co-director of the Consortium for the Advanced Study of Brain Injury at Weill Cornell and Rockefeller University. Dr. Fins is also the Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law at Yale Law School. Joe, thank you so much for being with me today. So let’s start off by explaining why is what you do important. Ethics really is important on a day to day basis. Tell us how.
Dr. Fins: You know, simply put, numbers don’t always equate with values, so you might speak to a family about the probability of a success for a complicated complex neurosurgical procedure and the number of might be adequate, a good number, but it might not be meet the values or the kind of life an individual would want to live or a surrogate would decide for somebody. You know, as a doctor myself, and those of you who are not here don’t know that I’m the only one wearing a white coat in the room. Dr. Stieg is wearing a beautiful sports coat. You know, I understand the moral stress that practitioners have in trying to reach the right decisions. And sometimes my colleagues get so deeply invested in their own patients that they need to kind of have a refraction, sort of an orthogonal look from a third party who knows enough about what’s going on to, to help assist. So I’m not, we don’t — I’d share the ethics committee here and we do, we do almost 400 ethics consults a year. We’re never there to replace people like you or the doctors and we’ve had cases to — Dr. Stieg and I’ve had cases together. We’re not here to replace you. We’re here to help you and help everybody make better decisions, really help families.
Dr. Stieg: It always amazes me when I see somebody on a second opinion and you see that some other surgeon has recommended some stuff that you just completely disagree with and you wonder, is it because the surgeon just wants to be helpful or is it because the surgeon wants to make a buck? Or is because the surgeon has a particular idea that they think is the right way to approach this clinical problem, which is it’s experimental and then how, how I have to emotionally deal with that. Then also morally and ethically try to educate the patient.
Dr. Fins: Well, interestingly, going back to the first code of medical ethics in the United States from the American Medical Association in 1847 it was really about how professionals dealt with each other, you know? So you really couldn’t in those days speak ill of another colleague. So if some other doctor was recommending something that was a, let’s just say, not prudent, you can’t criticize the other physician. Of course we’ve moved beyond that kind of decorum and we’ve begun to think about patient-centered ethics. But you know, in your, in your example, I think what we try to understand are the motivations. Uh, you know, and I think ethics and medicine is not morality in medicine. I think most everybody wants to do the good, wants to achieve the good, but it’s about competing goods. So a surgeon, uh, another physician who might have seen a patient first and you’re now doing the second opinion might see the achievement of goods through a certain surgical approach or recommending an operation. And you might actually recommend medical management. You know, my God, a surgeon recommending medical management. But you might think that’s the better way to achieve the good. So we are not about right and wrong. A lot of people think ethicists are about determining what is right and what is wrong. It’s more morality. We’re here to, to help us balance competing goods.
Dr. Stieg: In medical school, one of the things that I’ve learned over the years is that I spend the first 10 minutes really trying to just understand who my patient is. I don’t start walking up, look at your scan, boom. Here’s your problem, here’s what you need—
Dr. Fins: Well, you know that old saying, the secret of caring for the patient is caring for the patients, right?
Dr. Stieg: That’s why I ask them, what they do, how long they’ve been married, where do they live? You know, just a lot of personal kind of questions. So I kind of understand. I try to understand within 10 minutes what their value system might be. And you think we’re doing a good enough job in that in medical schools?
Dr. Fins: I think, I think that we’re — we think we are. And I think we’re trying to, we give a lot of lip service to, you know, patient-centered education and getting to know your patient. But I think sometimes it borders on the platitudinous and it’s sort of the, it’s on the periphery. It’s not central, but I think the more skilled and senior physicians and surgeons like yourself, people understand that, that you really can’t achieve, you can’t put your skills to use unless you know what they’re being used for. And just imagine if you were, you know, God forbid an orthopedic surgeon. Okay. And somebody had a bad shoulder. It would be important for you, for you to know whether it was an internist who, who barely did anything, like myself, or Mariano Rivera, right? Like what, what operation are you going to do? You have to know what the patient, who that patient is. The other thing is is that the patient really enfranchises you to use your skills, gives you a moral warrant of consent, right? Based on the presumption that and they’re, you know, patients are allowing you to wield the knife on them. Just think about that. In no other sector of society are people allowed to cut other people without going to jail. Okay. So, so there’s this moral obligation upon you to understand precisely what this patient needs the operation for. And so I think just as you know, you would do a very careful physical and neurologic exam to know, you know, what the nerve tracks are, and the roots. If you’re doing a laminectomy in somebody’s neck or whatever, you’re, whatever you’re doing, you really need to know who this patient is and how this operation fits into the broader scope of their lives. And I think that if you, if you, if you don’t do that, it would be almost as if you weren’t doing the physical exam.
Dr. Stieg: So let’s flip to the other side of the spectrum and the patient and your areas of expertise is in brain injured patients and we’ll get there eventually. But I wanted to talk here — I wanted you to talk to us a little bit about the concept of advanced directives and why is that so important? Basically the patient can protect themselves a little bit from the overzealous doctor but also prepare themselves for the unforeseen bad accident.
Dr. Fins: And we recommend, and you know, the American College of Physicians and all the preventative health services recommend that everybody has an advanced directive, not just the elderly or people who are facing the end of their lives because they have a terminal or life threatening illness. I mean all the, all the catastrophic cases that led to the advanced directive movement, which is a document that allows you to articulate your preferences in advance so that somebody else can make decisions for you. That would be a healthcare proxy form or in other States, a durable power of attorney for healthcare or a living will where you fill out a form and there’s no other person, you just write down your preferences. All those, all those cases, those important cases involved young people who had catastrophic neurologic, uh, accidents like the, the Nancy Beth Cruzan case, which went all the way up to the Supreme Court and Sandra Day O’Connor, in her opinion said, “Wouldn’t it be a good idea if people could articulate their preferences in advance?”
Dr. Fins: Cause there was a whole debate over what whether or not her, her feeding tube, could be removed in Missouri. And uh, that led Senator Danforth of Missouri and the late Senator Daniel Patrick Moynihan together to write legislation. And Moynihan, you know, it was a trained sociologist and a deep thinker and Danforth was an ordained minister who actually went to Yale Divinity School. So they got two intellectual figures got together, right? They wrote the Patient Self Determination Act and it, it was really in the wake of the Cruzan decision. So the idea is that everybody should have these documents to articulate their preferences in advance. They’re recognized under federal law, and institutions that receive Medicaid and Medicare were obliged to follow them. Every state also has their own iteration of that. And what it does is two things. One, is it allows you the patient to articulate what you want, how you want to die.
Dr. Fins: And so if you don’t want to die in an ICU, if you want to die at home, if you don’t want to extraordinary measures, if you have, if you want certain kinds of care, it can also be affirmative requests. So you can articulate that. The thing that people don’t appreciate is that it’s the final gift that you can give to your loved ones because the very person that your daughter or your son or your spouse is going to want to talk to, when you’re unable to speak for yourself as you and say, “Phil, what did you want? What did you want? Did you want this?” And, and in a way, if you don’t fill out these forms, it’s a kind of a mandating them. You’re abandoning your kids. Everybody wants to take care of their kids, take care of them through this guidance.
Dr. Stieg: Is this easy to do? I mean, you know, do people have to go to lawyers and get documents filled out where they’re going to incur debt? Can you just go to your family doctor and say, I need, you know, I need to do advanced—just what’s the process cost and how easy?
Dr. Fins: It’s free. These documents are readily available in the hospital in, in most hospitals from the Department of Health and, nondisclosure here, we actually wrote a booklet which you can get on Amazon for $8, and the proceeds for this go to the Division of Medical Ethics. I’m not going to make a nickel on this. I’ve, last time I checked it was $8 maybe $9 I don’t know. And it’s called Fidelity, Wisdom, and Love: Patients and Proxies and Partnership. And what it is is a workbook that you and your significant other can work through. We have three different scenarios that you can talk about what your values are and at the back there is a form to fill out and it’s interactive because one of the things that is ironic about the patient self-determination act, it’s really not patient self-determination. That’s like sort of an atomistic view. You know like we’re all, atoms in isolation. Life is really molecular, you know, if I’m your healthcare agent, Phil, you and I are in a molecule and so it’s about relationality. It’s about interaction.
Dr. Stieg: One of the cases that you and I shared together was a young woman that was pregnant, had a terminal brain bleed and then what to do with the pregnancy and actually how to handle her. She required surgery. We knew it wouldn’t have a happy ending and the husband was stuck betwixt and between about making the decisions. Basically he was the surrogate. What is the responsibility of the surrogate? Say in the situation where a person has done the advanced directives or in the situation where there are no advanced directives, what advice do you give?
Dr. Fins: Right, right. There are, there are decision-making hierarchies. So you’re supposed to follow express wishes, substituted judgment and best interests. So what, what are they? Expressed wishes: you told somebody, I’m a Jehovah’s Witness. I don’t want blood. Expressed wishes, it’s pretty clear. Substitute judgment: He never said that, but we’re all Jehovah’s Witnesses and he taught about the sin of receiving blood from Leviticus. So even though I really don’t know precisely what the person would have wanted, I’m substituting, I’m putting myself in their shoes. If we could wake them up magically, what would they say? Substituted judgment. But it’s less, you know, less clear than expressed wishes. Then the best interest standard, the person is anemic, their heart rate is really fast. They’re in shock. And you know, they need blood. What’s the best interest standard? They get blood. So there’s a decision making hierarchy. One of the things, we actually did empirical research about 10 years ago on patients and proxies and how they make decisions.
Dr. Fins: And one of the things that’s really interesting and most people won’t talk about this, and I’m surprised that this hasn’t gotten out more, is the valence effect of wishes. So, no means no. If I don’t want something like in most contexts, no means no, right? No means no. I don’t want to, you know, I don’t want extraordinary measures and we looked at how patients and proxies interpreted circumstances, but I want everything done no matter what sort of a positive request is conditional. And people actually in designating somebody to represent them, expect them to use their judgment and are okay generally with them using their judgment to say, yeah, they wanted everything done, but that’s no longer possible so we don’t have to achieve it. So there’s really two kinds of moral authority that go into advanced care planning. One is substantive moral authority, right? Where I fill out the form and I write down what I want. Then there’s this other thing called the procedural moral authority or what, it’s kind of a covenant, right? Where you give somebody the authority to make decisions for them. And out of the 7 billion people in the world, I chose you to make decisions for me and that that gives you a kind of standing to use your discretion. You know, people say like, for example, said, “Phil, I never want to be on a ventilator.” Okay, you can interpret that. But suppose I come in cause I, when I’m walking out of the office here and I go back to my office, which is across the street, I get hit by a truck and my spleen ruptures and I need an emergency laparotomy. You know, my literal, my expressed wish is, “I’d never want to be on a ventilator. Is that what I meant?” No, right? So you, you are, you would allow my agent to say, “Yeah he wants his spleen taken out cause he wants to come back and do another podcast.”
Dr. Stieg: So, the difficulty in that scenario is, at the granular level. When we’re meeting with the family, you can give them this ethical and logical hierarchy through which they can work. How does that play out emotionally? That’s, that’s the dilemma.
Dr. Fins: So what I just told you is what’s going on in my head. It’s not necessarily what’s coming out of my mouth, okay? And I think here we have to be much more compassionate and and sensitive to where the patient and family, where the family member is. So one of the things I like to do is use time and say, “You don’t, we don’t really need to decide this today. It’s Friday. Why don’t you talk to your family members? Let’s sleep on it. Let’s come back on Monday.” So, you know, one of the things is to realize there’s a tremendous power differential. Let people have the opportunity to kind of sort it out, give them the opportunity, tell them what their rights are. You know, as the healthcare agent, you, you’ll have the right to make decisions and it’s really not our decision to make.
Dr. Fins: It’s your decision to make and we’re going to help you achieve the best decision for you and your loved one. And so, and then I’ll say, some families after they searched their soul and they searched their memories about what the patient had said would decide to press on. And on talking about the case, the case you described them to more generically, would want to press on. And other families equally loving and caring, but coming from a different place would decide that maybe, maybe they don’t want their mother or their loved one to suffer that way. And these are legitimate choices.
Dr. Stieg: In today’s society, I’ve found that it isn’t often a family member because they’re alone. Yeah. And the surrogate is a close friend, right. Does the surrogate have legal rights protections in case somebody shows up five years down the road and says, “I’m their long lost child and you killed my parent?”
Dr. Fins: Right? So, so there’s a good faith presumption and the burden is sort of on us, the institution to go through, there’s a list, there’s a hierarchy. So the hierarchy is, you know, the patient, of course, if they have capacity, somebody who’s been designated by the patient, a court appointed guardian, right? And then there’s, you know, a spouse, adult children, you know, other other family members, close friends. And we would, we have to go through that list. It’s stipulated in New York State Law and every state has some kind of version of that, that list, if we were unable to locate somebody who was reasonably locatable right, we didn’t make a call, the phone number was in the chart and we didn’t call a phone number and that person appeared because we hadn’t made that call. That would be potentially problematic. But typically what we do is we’ll ask the social worker to look around for close relatives, and we exhaust the list.
Dr. Fins: But there’s really, there’s a good faith presumption and that’s also a standard in the joint commission, which, which accredits hospitals. So you, you act on a good faith presumption. The other, the other side of it is if a family member comes in and says, we have an advanced directive, okay? And they attest to that. We make a good faith presumption to accept that because sometimes you know, people erroneously, and this is just a clinical pearl for family members, don’t put this in the vault because once somebody you know is, is that sick, you can’t, the only person who can get into the vault is the person who’s in the ICU and they know they’re the one who has the key. So you want to make this, this document accessible and available, give it to your doctor and put it in your medical record, give it to your healthcare agents so they have access to it.
Dr. Stieg: Another example that I think that you and I shared was an individual that met the criteria for brain death, but due to religious reasons, their heart was still beating.
Dr. Fins: Right, which is typical.
Dr. Stieg: Yep, and on the basis of their religion, that meant that the patient was still alive and the dilemma that that puts the physician in the family in and we know how we played it out. Perhaps you can describe how you like to approach those issues.
Dr. Fins: Yeah, you know, brain death is a complicated area in medical ethics and unfortunately it’s, it’s, it’s an issue that comes up rather frequently in my experience over the last 25 years because we live in a state that has what’s called the reasonable accommodation clause. And in New York, a brain death has recognized as death, but we have to reasonably accommodate people who have a religious or moral objection to that designation. So in New Jersey, if a family objects, one has to define death based on cessation of cardiac and pulmonary function — the heart stops. Now what is brain death? Brain death is whole brain death, it involves the brainstem and higher cortical function. And brainstem is, you know better than anyone in the room is the autonomic nerve center for the body that generates respiration and, and heartbeat, although there is an intrinsic pacemaker in the heart, which is why the heart continues to beat and the person is maintained by that intrinsic pacemaker in the heart as well as the ventilator that breathes for them.
Dr. Fins: The challenge is, these people look like they’re alive. They have a heartbeat, they’re perfused, they look like they’re alive. I have seen cases where patients have had a Lazarus reflex, which, I don’t know if you’ve ever seen this and you’re, it’s exceedingly rare. But this is a situation where, I’ve seen this one time where a patient was declared to be brain dead by a pulmonologist. They take away the ventilator, they just give them oxygen and the carbon dioxide goes up 20 millimeters of mercury and the 20 millimeter of mercury rise should, if your brainstem is still functional, trigger a breath. In fact, that’s how we, we drown when we’re underwater. It’s not that we’re trying to get oxygen, but it’s the carbon dioxide that prompts a deep breath. And then we swallow water and we, and we would, we would drown, okay. So the patient was declared to be brain dead by the pulmonologist.
Dr. Fins: Smart guy, but the blood gases, all the math, everything, you know, and then the patient goes like this. The patient reaches their hands together as if to pray. It’s why it’s called the Lazarus reflex. Okay. Like Jesus and Lazarus rising from the dead. The same pulmonologist reaches into his pocket, grabs his stethoscope to listen to this person’s lungs to see if this person is breathing, when in fact, they had just done the calculation to show that, that the carbon dioxide had gone up by 20 millimeters of mercury indicating that there had been no respiration. So even for a trained intensivist, it is counterintuitive and that’s brain death.
Dr. Fins:So how do we handle brain death? It’s complicated because it, in some religious traditions, Orthodox Jewish, some Afro-Caribbean cultures do not accept brain death. But let’s talk about the Jewish tradition because that’s where it’s in the Orthodox Jewish tradition where it’s the most common we encountered. There’s a story in the Talmud, which is one of the great documents in Jewish law, commentaries where there is a Rabbi, Reb, who is on the second floor of his house. And, he’s dying. His soul is egressing to heaven. And there is a guy in the back sawing wood, which is disturbing the egress of the soul to heaven. God is calling in this, in this story. And the rabbinical students, it was tough times. They throw stones at the guy who is sawing the wood, so as not to disturb the egress of the soul.
Dr. Fins: So in Judaism, there’s this notion of a “gosses,” which is kind of a fancy word for futility. You know, you’re dying. God is calling, don’t get in the way. So when I speak to Orthodox Jewish families, I don’t try to say brain death is death. I try to put it into the theocentric vernacular and say, this is a gosses. So let’s decide in the context of your religious paradigm between, between respecting the sanctity of life — God gives you life, so it’s not for us to take a life, okay. Or God is calling you and let’s get out of the way. And, and oftentimes, not all the time, that can lead to a middle ground. And we try to use cultural intermediaries in rabbis who are helpful. You know, we’ve gotten very in, in the country, we have a lot of culture wars and it’s gotten sometimes more political and theological and it becomes complicated.
Dr. Fins: Every religious tradition has, has a way to grieve and mourn for people who are dying. So the Shiva in Judaism or the wake in other traditions. And what happens when, when somebody is brain dead is, everybody knows the person is either dead or depending on your definition en route to dying, okay? And what happens is the family then, is isolated from the tradition because they can’t begin to mourn. People can’t come over with food and, and they can’t, they can’t put drapes over the mirrors and the men can’t begin to grow their beards and go into the grieving process. So they’re, they’re kind of in limbo just as this, this body is in limbo and it actually is, makes the bereavement more complicated and it’s really a hard place to be. So I think it’s actually cruel to, to follow the theology to the letter of the law because it’s not very pastoral. And the pastoral care folks that I talked to, these are people who work in the hospital who are chaplains, who are not theologians, tend to have a much more psychological and pastoral view of what’s good for real people than kind of a strict adherence to dogma and doctrine.
Dr. Stieg: To hear more about this important topic, please join us on our next episode.