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