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Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.
Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives, but when demand outpaces supply, how do we decide who gets them? Novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should these “Brave New World” technologies be introduced, and who should control them?
playing god? is a production of the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.
The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god
00:00:03
Speaker 1: You know, it was nine years ago when somebody laid this all out for me and said, this is what's going to happen. The pain, the trauma, the hell you're going to put your family through. Oh and by the way, you know, you're going to look like this and people will scare at you and people will be like, what the hell is going on with that person? I would have said, oh don't no, no, no, don't let me wake up to this. Oh no, no, no, no, there's no way.
00:00:32
Speaker 2: Almost a decade ago, Andrea Rubin was in a horrible accident. Her doctors thought they could probably save her life, but for two months, Andrea wasn't able to tell them if that's what she wanted. She was in a coma and then heavily sedated for several weeks. So other people stepped in to make life changing decisions for her, and it got messy.
00:00:58
Speaker 1: Everybody's interests wore on my behalf, but they were completely different.
00:01:03
Speaker 2: What happened to Andrea was one of those rare freak accidents. Her car caught fire while she was trapped inside. A crew of firefighters rescued her, but by then the majority of her body was covered with pretty severe burns, the kind that go deeper than the skin and damage your muscles and bones. Paramedics airlifted her to a nearby hospital in Cleveland, Ohio, where she lived. The doctors weren't clear at first if they'd be able to save her her burns were that bad. But one thing was immediately clear. Her face was so swollen that it was blocking her airway. To give Andrea even a chance of surviving, doctors wanted to put her on a ventilator, a machine that helps you breathe. The ventilator would give the forty nine year old Andrea a shot at staying alive, but when she woke up, her life would look pretty different.
00:01:59
Speaker 3: She suffered burns over a significant portion of her face, and so she was going to lose her nose and her ears.
00:02:07
Speaker 2: This is Monica Garrick. She's a co director of the Center for Biomedical Ethics and Metro Health System, the hospital where Andrea was treated.
00:02:16
Speaker 3: She had significant disfiguration of her lips in her eyelids. Her vision was going to be questionable. She was going to be living without at least one of her arms from the elbow down.
00:02:28
Speaker 2: Even though the ventilator will keep her breathing. Andrea would need many surgeries to have a second chance at life outside of the hospital room. Because burns are so painful, and because she was being operated on so frequently, doctors put Andrea into a medically induced coma so she couldn't consent, not to the ventilator or the surgeries. So the hospital called her seventy nine year old father who lived nearby. He arrived at her bedside and he told doctors to go ahead with the ventilator and the surgeries to try to save his daughter's life. So doctors put Andrea on the ventilator, and that's when things got complicated.
00:03:11
Speaker 3: She had these friends who were adamant she would not want treatment to be continued.
00:03:16
Speaker 2: These friends showed up at the hospital burn unit too, and just down the hall from where Andrea lay unconscious. The friends argued with the medical team.
00:03:25
Speaker 3: They were out of I mean they were, you know, just that this would not being burned and with the kind of scarring she was going to face was not going to be okay with her.
00:03:37
Speaker 2: Andrea would not want to live without an arm, they said. She wouldn't want to wake up without a nose or ears, and no longer recognize her face. Her father may want her to live, but if Andrea could speak, she would say, let me die. This made doctors pause. Even if they could save her, the surgeries would affect her quality of life, and here were her close friends saying she wouldn't want to live that life. This was no longer just a tricky medical decision. It was an ethical problem. So the doctors asked Monica and her team for help.
00:04:14
Speaker 3: That team was like, look at these friends are so adamant. They're so adamant. What do we do. They were very convincing that she would not want to live this way. In fact, one of them grabbed our ethics fellow shook her and begged her to get the team to stop treating Andrea and stop torturing her. Legally, we know what we're supposed to do, but ethically it gets more complicated.
00:04:40
Speaker 2: While Andrew's case is severe, her situation is actually more common in hospitals than you might expect. At some point, you or someone you love will face a life changing medical decision. It might not be clear what is the right decision, And if you can't consent because you're unconscious or sedated, how should doctors and loved ones decide for you. I'm your host, Lauren Aurora Hutchinson. I'm the director of the Idea's Lab at the Johns Hopkins Berman Institute of Bioethics. I've spent years working on stories about the ways in which medicine and science show up in people's everyday lives. In this series, I'm going behind the scenes to discover how some of the most significant medical innovations have impacted people's lives and continued to whether it's saving lives or creating babies, New technologies are often accompanied by new ethical questions. Just because we can do something, does it mean we should? And who gets to make those kinds of decisions? When does it seem like playing God? In each episode, you'll hear directly from patients, leading bioethicists, scientists, and physicians as they grapple with these kinds of questions. On today's show, The Ventilator, it saves lives, but it also forces us to ask who should make life and death decisions for someone who can't tell us what they want. From Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics, this is playing God, So who should make decisions on behalf of a patient who is heavily sedated or unconscious, and how do they make the right call. We'll return to Andrew's story and how decisions were made in her case a little later, but first I wanted to understand how experts even begin to address the ethical questions in cases like this. To find out, I asked Jeffrey Kahan. He's the director of the Johns Hopkins Berman Institute of Bioethics. Jeff is extremely well regarded in his field, and I'm not just saying that because he's my boss. So, Jeff, from a bioethics perspective, where do we start answering these types of questions?
00:07:00
Speaker 4: Well, first, I want to say thanks Lauren for taking the time to talk with me about these important questions, and not just because we work together. So first, I think we have to answer a question, which is what's the end goal here? And the end goal really should be preserving the autonomy of the individual patient, that is, the control that they have over themselves and their bodies.
00:07:24
Speaker 2: So in the case here with Andrea, it's about making sure that the decision that gets made is actually the one that Andrea would want exactly right.
00:07:33
Speaker 4: So it seems really obvious to us now in twenty twenty three talking to each other that we would ask the person first and foremost. But that wasn't always the way it was. The system used to be much more paternalistic. That is, the doctor knew best and patients just went along with whatever the doctor recommended. And so it was a sea change, really a big difference in the way the medical profession practices, and what more importantly, maybe patients expected that their decisions mattered, actually mattered more than the doctor's recommendation.
00:08:12
Speaker 2: So when did this change happen and what was it that made the change happen? When it did, why did doctors start considering patients' wishes?
00:08:19
Speaker 4: It really began in the nineteen sixties. American society was going through some pretty dramatic changes in the nineteen sixties into the early nineteen seventies. We had the Vietnam War raging, We had Watergate and the scandal that ensued. We had civil rights finally starting to take hold in a lot of political turmoil around that, and along with identification and finally implementation I guess of civil rights came a recognition that patients also had rights. Rights to decide for themselves and to make decisions about what should happen to their body. And along with that came some technologies which called it to question and how we would actually be able to allow patients to take control of decisions about their bodies.
00:09:05
Speaker 2: So, can you tell us about what kind of technologies it was and what ethical questions it came about.
00:09:12
Speaker 4: Well, one example of a technology that came along around the same time and challenge some of these ideas around patient autonomy was the ventilator. So a machine that allowed doctors to save the lives of people who are critically injured to before that technology was invented would have died like Andrea. The challenge is, if somebody is connected to a ventilator, they can't most of the time respond to questions, certainly not by speaking verbally, and most of the time they're unconscious, making it all but impossible to understand what their wishes might be when it comes to whether they should be kept alive when the quality of their life after they may or may not recover is so uncertain. And so a technology that allowed people to be kept alive in a way that just wasn't possible before undermined or made very difficult the idea of also respecting their autonomy.
00:10:07
Speaker 2: So I guess doctors were again playing God in the sense.
00:10:11
Speaker 4: And they were in a position to take God exactly. And the ethics question is, wow, should they be the ones who get to decide or how best to figure out what would be in the patient's interest, what the patient's desires would be? Who gets to decide?
00:10:30
Speaker 2: Okay, so how do we get from that to now? And how should these decisions get made?
00:10:38
Speaker 4: The idea of trying to make sure that people who could not answer the question about what they would want for themselves led to something called an advanced directive, so a document that articulates what people would or would not like if they found themselves in a situation like being maintained on a ventilator, usually by checking back, but also really importantly to identify somebody who can speak on their behalf.
00:11:05
Speaker 2: And then what happens if someone hasn't left anything behind like an advanced directive, so like what happened with Andrea.
00:11:12
Speaker 4: Unfortunately that's a very common occurrence. Then the question is and should be who can speak with knowledge about their wishes? What would they want?
00:11:24
Speaker 5: Not?
00:11:24
Speaker 4: What do we think is best for them, but rather what would they want? And if we don't know the answer to that question, then we have to ask a different question, which is what do we think would be best for them? If we don't know what they would want. The problem occurs when members of the family don't seem to know what the patient would want, or other people show up and say, I know this person better than the members of their family, and I can speak with knowledge about what they would want in a way that's better, more informed than the people who are related to them.
00:11:59
Speaker 2: So in Andrea's case, there was a lot of disagreement as we had. So what happens in those cases?
00:12:06
Speaker 4: Then there is a process. It's required as a matter of accreditation for hospitals that an ethics committee exists at the hospital and that there be a process for something called an ethics consultation and ethics consult So people like Monica in our story, who was a clinical ethics expert, social workers, psychologists, sometimes psychiatrists, members of the legal department in the hospital. All those people are sitting around at table in a conference room, being presented with a case and then trying to help advise how to proceed.
00:12:41
Speaker 2: So what would be used as evidence in those kind of consultations. Say, if Andrew's friends had had something written down that Andrea had said, would that help?
00:12:50
Speaker 4: I think it would help inform the process. You have to hope in a case like andreas, if there was concrete evidence that the friends could bring that it would be used to inform the conversation, hopefully inform the father's decision making. So it wouldn't change who gets to decide, but hopefully it would change the information that the person who gets to decide would use to make the decision on behalf of the patient.
00:13:17
Speaker 2: Okay, thanks Jeff. After the break, we'll find out how well Andrea thinks this system worked for her. How did the ethics team, her loved ones, and doctors decide what to do, and did she feel like they made the right call.
00:13:34
Speaker 1: So I think it's a very difficult question to answer.
00:13:40
Speaker 2: Wow, let's go back to the hospital burn unit. Andrea Rubin is covered in life threatening burns and is unconscious. Doctors say the ventilator and surgery are her only shot at staying. Andrea's dad is ready to move forward, but Andrea's friends are insistent that Andrea wouldn't want to be kept alive under these circumstances.
00:14:12
Speaker 3: They were so adamant. In fact, I had a nurse tell me years later in tears, years later thinking back about the stress that they were feeling, because the friends were so adamant that they were sending Andrea into a life she would not want to live again.
00:14:34
Speaker 2: Monica Garrick, the hospital bioethicist. According to Monica, Andrea's friends couldn't override the dad's authority to make the call. But if the friends had any evidence of Andrea's wishes, if there was a text from Andrea, if they could remember the details of a conversation, Monica could take that information to Andrea's dad.
00:14:55
Speaker 3: You know, we might have talked to her father and said, look, this is what we're being told, and this is an consistent with the fact you're willing to consent. Can you talk to us about why you're consenting on her behalf?
00:15:06
Speaker 2: But her friends didn't have any concrete evidence of Andrew's wishes, so Andrew was kept alive. She had nineteen surgeries while she was sedated, and around thirty nine more over the next five years, Andrew spent seven weeks in an induced coma and another month and a half in and out of consciousness, and slowly she began piecing together the story of what happened. She learned about what her friends did.
00:15:34
Speaker 1: They were fighting with my dad saying, you know, obviously you don't know your daughter. They really felt my father didn't understand that for a girl who forty nine years old, yeah she can walk, but she does does she want to walk through this life looking like this?
00:15:55
Speaker 2: She also learned what surgeons had done to save her.
00:15:58
Speaker 1: They made a makeshift eyelid, which just looks basically looks like I've been punched in the face right, so I have no vision in that eye. I lost three quarters of my nose. I had burns on my face, so I don't look anything like I used to do. A lot of scar tissues, so I can't really smile.
00:16:20
Speaker 2: The most she can manage now is a slight upcurl of her lips. Also, the burns on her scalp were so bad she can no longer grow her hair. Like a lot of people, hair was pretty important to Andrea even before the accident. She felt pretty insecure about it.
00:16:39
Speaker 1: I could never get my hair like long enough the way I wanted it, and I'm like once I discovered hair extensions, it was game over. I'm like, oh my god, I have long, full hair. Finally, I wasn't really like thrown on all the makeup and you know, having to look perfect. I took very good care of myself. I always worked out. I cared about what I looked like. But I wasn't all about it, you know, except when it came to the hair extensions.
00:17:03
Speaker 4: I was all about it.
00:17:05
Speaker 2: These days, Andrea wears a medical wig. It's long, straight and honeyblonde, just like her hair was before the accident. Of course, it's not exactly the same, and that's part of what her friends were worried about all those years ago, why they thought Andrea might not want to stay alive.
00:17:23
Speaker 1: What my friends were suggesting was extreme, but then again, what happened to me was very extreme.
00:17:29
Speaker 2: The three friends who spoke up for her at the hospital, all women, are still her closest friends today, and she says there are no hard feelings. They've talked about why they were so adamant that she shouldn't be kept alive.
00:17:42
Speaker 1: They're like, we just didn't. We didn't want to put you through this. We didn't think you'd be happy. We were speaking for you, as we thought you would have spoken for yourself.
00:17:53
Speaker 2: They aren't afraid to talk about what happened. They can even laugh about it.
00:17:57
Speaker 5: You know.
00:17:58
Speaker 1: It's like I always grant, Oh, I just would have you know, I would have killed you too.
00:18:06
Speaker 2: She also understands why her dad made the call to keep her alive.
00:18:10
Speaker 1: I am pretty sure it was a difficult call for him. But I think at the end of the day, when doctors said, hey, we probably can save her, I guess what's a parent going to do?
00:18:26
Speaker 2: But were her friends right when they assume the surgeries would compromise her quality of life so much that she wouldn't have wanted to survive.
00:18:34
Speaker 1: You know. I go back and forth with this. At the time, I think they were right. Of course, Now in hindsight, I'm so happy I'm alive. A lot has changed on the outside, but my life really is still pretty remarkable.
00:18:51
Speaker 2: Andrea is happy she's alive, which is pretty much the best case scenario for someone who didn't have their wishes spelled out in advance. And again we're not picking on Andrea. Most people don't have any of this stuff worked out.
00:19:05
Speaker 1: I tell everybody, get your stuff together, because I didn't have anything together. Nothing and everybody had a long, hard journey because of it.
00:19:15
Speaker 2: And if you're thinking, great, I'll just write an advanced directive. Problem solved. It's still hard to predict how you feel in every situation. You might not understand all the options available to you, especially if you're dealing with a life saving medical technology like the ventilator. The ventilator was an issue. In another case, Monica got involved in.
00:19:40
Speaker 3: Our service, got consulted by a surgeon and said, I don't have an issue now, but I want you involved now because this is a little complicated.
00:19:52
Speaker 2: The surgeon told her he had a patient who might need to be on a ventilator for just a day or two before he was well enough to breathe on his own. The problem. The patient had been very explicit about his desire to never be put on a ventilator.
00:20:06
Speaker 3: He had written it on the backs of manila envelopes, in notebooks and like sort of scrap pieces of paper. So I don't know what had happened in his life, but he was very sure he did not ever want to be on a breathing machine.
00:20:23
Speaker 2: It was up to his daughter to decide what to do, and she knew his dance, but it wasn't clear to her if he'd understood that being on a ventilator can be temporary. Did he really mean never or just not forever. The daughter reached out to the hospital's bioethics consult team. She wanted help from experts like Monica.
00:20:45
Speaker 3: And so, what do I do if you're telling me it's temporary and that it'll save his life and that without it he could die? But he said never? What do I do?
00:20:57
Speaker 2: Remember Jeffrey Kahn, our bioethicist from earlier, as he pointed out, we can't always predict what a patient would decide for themselves. In those cases, we have to decide what would be best for them, what would be in the patient's best interest. Monica and the patient's daughter got the input of the medical team and decided that it would be best for him to be put temporarily on a ventilator. Luckily, the daughter didn't have to act on that decision. Her dad didn't need to be put on a ventilator.
00:21:27
Speaker 3: He got better and he came to a few days later, and when he woke up, the first thing out of her mouth to him was, Dad, you know, this is what happened, and they almost had to do this to you. But you've said repeatedly and you wrote it down that you never wanted to be on a ventilator. What should I do in the future if this ever happens again? And he said, well, why all means say yes.
00:21:50
Speaker 2: The idea of acting in the patient's best interests accounts for some of the gray areas in advanced directives, because even if you have an advanced directive, it's hard to know if you feel the same way when you're in a life or death situation.
00:22:05
Speaker 3: People when they get close to death, if they've said I don't want any interventions, sometimes say well, now give them to me. I've changed my mind. And some people who get close to death who have said, you know, give me every intervention get close and say no, no, no, I don't want them. Now I'm ready to go. So all this decision stuff at the bedside gets really it's extremely complicated. You have the patient who sometimes is unreliable, not because they're not good people or not because they haven't thought about things, but because we change our minds all the time about everything.
00:22:40
Speaker 2: Andrea understands this as well as anyone I know.
00:22:44
Speaker 1: If it were nine years ago and somebody said, Okay, here's what's going to happen. You know you're going to be completely disfigured, blah blah blah. Would could you do it? My answer to be, heck no, don't even think about it. Save your time and enerchanges. Let me go.
00:23:00
Speaker 2: Back then, physical appearance was pretty important to Andrea. It played a big role in her quality of life. Today, Andrea looks completely different, but her quality of life is better than she could have imagined. She's glad to be alive. Monica is trying to help Andrea make a plan in case she ever ends up in another life or death situation. She's encouraging Andrea to prepare an advance directive.
00:23:31
Speaker 3: Had a conversation with her about what happens if she suffers, you know, really devastating seespine injury and ends up with quadriplegia. Then what And then she's told me that she wouldn't want to continue to live like that, and I'm like, but you said you wouldn't want to continue to live like this and she said, right, but that's really my limit. And I said, well, how do you know that that's really your limit? When you thought this was your limit, and then this, and she said, well, you're right, Monica, I don't know. And I I said, so, then what are we supposed to do? And you know, she basically admits she doesn't really know what we're supposed to do. Right if something happens to her again.
00:24:08
Speaker 1: I've gone through so much. I just have this fighting spirit. But oh heck no, no, no no, I don't have any more fight left in me. But you know, when it all is said and done, I want to live.
00:24:19
Speaker 3: These aren't the thoughts of a flaky person, right. Andrewa is extremely articulate. She's very smart, she's very thoughtful. I think she's just typical of normal human beings.
00:24:35
Speaker 2: Normal human beings constantly change their minds, our values, and ideas about things like appearance and quality of life. They shift over time. How we feel about things depends so much on the context. But the more you think through your wishes and share them with others when things are okay, the easier is for everyone to respect your wishes. When things are dire, I.
00:24:59
Speaker 1: Get to live, to do, I get to try to make a difference. I have some happiness, less pain, no more hospital. It's like, yeah, the last thing I want to do is sit here and start talking about the worst thing in the world. But it is something I need to start really focusing on again.
00:25:17
Speaker 2: Of course, we can't plan ahead for every scenario. In some cases, a loved one may have to step in and make a call, and when they do, there's a ton of pressure and stress to get things right. For some people that's the most important thing, But for Monica, what's more important than being right is how you get to your decision.
00:25:39
Speaker 3: Personally, I've told my loved ones, look, you know, do what you think is best in that moment, and that is okay with me. Like, just know that I support whatever decision you made. And I had a nurse tell me. She was a retired nurse, and she said, Monica, I always told loved ones, family members, if you make the decision from love, you cannot make a bad decision. You know, actual love, not selfishness or but real love for the person. You can't make a bad decision. And I think that that's right.
00:26:11
Speaker 6: Coming out this season on Playing God, I just remember laying there and watching the lights above me as we're walking down the hallway, and the first thing I said was, do I have a uterus, and the nurse who was pushing me look down and they smiled and they're like, you have a uterus.
00:26:29
Speaker 1: So there were questions about who was actually the narrator of the life at that point. Was it the technology or was it the person? Was it some kind of combination.
00:26:38
Speaker 5: I am completely dependent upon electricity as medicine, and there will never be a point in my life where I can quote go off the grid because I can never be without electricity for my own survival.
00:26:56
Speaker 4: You sort of have to ask yourself, what would I do as a parent? Wouldn't I do anything I possibly could? How can you not try everything when you're trying to save the life of your child?
00:27:05
Speaker 2: Many thanks to our guests Andrea Rubin and Monica Gerrick. Playing God is a co production of Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Emily Bourne is our lead producer. This episode was also produced by Sophie Crane and Lucy Sullivan. Our editors are Karen Schakerjee and Kate Parkinson Morgan. The music and mixing by Echo Mountain Engineering, support from Sarah Bruguer and Amanda Kaiwan. Show art by Sean Krney fact checking by David jar and Arthur Gompertz. Our executive producer is Justine Lang at the Johns Hopkins Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan and Anna Mastriani, working with a Media hood funding provided by the Greenwall Foundation Special thanks to Tammy Coffee. I'm Lauren and Rora Hutchinson. Come back next week for more Playing God. If you're interested in learning more about these stories and discussions, visit the Berman Institute's guide to the podcast at Bioethics dot JHU dot edu, slash Playing God, or find us on social media at Burman Institute