WEBVTT - I Wouldâve Let You Die, Too 0:00:03.160 --> 0:00:05.280 You know, it was nine years ago when somebody laid 0:00:05.320 --> 0:00:07.920 this all out for me and said, this is what's 0:00:07.960 --> 0:00:12.320 going to happen. The pain, the trauma, the hell you're 0:00:12.320 --> 0:00:15.120 going to put your family through. Oh and by the way, 0:00:15.320 --> 0:00:18.360 you know, you're going to look like this and people 0:00:18.400 --> 0:00:21.360 will scare at you and people will be like, what 0:00:21.400 --> 0:00:25.080 the hell is going on with that person? I would 0:00:25.079 --> 0:00:28.400 have said, oh don't no, no, no, don't let me wake 0:00:28.520 --> 0:00:30.840 up to this. Oh no, no, no, no, there's no way. 0:00:32.640 --> 0:00:37.320 Almost a decade ago, Andrea Rubin was in a horrible accident. 0:00:37.920 --> 0:00:41.239 Her doctors thought they could probably save her life, but 0:00:41.400 --> 0:00:44.400 for two months, Andrea wasn't able to tell them if 0:00:44.479 --> 0:00:48.559 that's what she wanted. She was in a coma and 0:00:48.600 --> 0:00:52.560 then heavily sedated for several weeks. So other people stepped 0:00:52.600 --> 0:00:56.640 in to make life changing decisions for her, and it 0:00:56.760 --> 0:00:57.480 got messy. 0:00:58.240 --> 0:01:02.880 Everybody's interests wore on my behalf, but they were completely different. 0:01:03.840 --> 0:01:07.520 What happened to Andrea was one of those rare freak accidents. 0:01:08.160 --> 0:01:11.160 Her car caught fire while she was trapped inside. A 0:01:11.240 --> 0:01:14.959 crew of firefighters rescued her, but by then the majority 0:01:14.959 --> 0:01:18.520 of her body was covered with pretty severe burns, the 0:01:18.600 --> 0:01:21.160 kind that go deeper than the skin and damage your 0:01:21.240 --> 0:01:26.080 muscles and bones. Paramedics airlifted her to a nearby hospital 0:01:26.200 --> 0:01:30.559 in Cleveland, Ohio, where she lived. The doctors weren't clear 0:01:30.600 --> 0:01:33.160 at first if they'd be able to save her her 0:01:33.160 --> 0:01:37.080 burns were that bad. But one thing was immediately clear. 0:01:37.440 --> 0:01:40.600 Her face was so swollen that it was blocking her airway. 0:01:41.600 --> 0:01:45.120 To give Andrea even a chance of surviving, doctors wanted 0:01:45.160 --> 0:01:47.800 to put her on a ventilator, a machine that helps 0:01:47.800 --> 0:01:51.680 you breathe. The ventilator would give the forty nine year 0:01:51.680 --> 0:01:55.240 old Andrea a shot at staying alive, but when she 0:01:55.360 --> 0:01:58.440 woke up, her life would look pretty different. 0:01:59.400 --> 0:02:02.360 She suffered burns over a significant portion of her face, 0:02:02.880 --> 0:02:05.920 and so she was going to lose her nose and 0:02:05.960 --> 0:02:06.600 her ears. 0:02:07.240 --> 0:02:10.160 This is Monica Garrick. She's a co director of the 0:02:10.200 --> 0:02:14.240 Center for Biomedical Ethics and Metro Health System, the hospital 0:02:14.280 --> 0:02:15.480 where Andrea was treated. 0:02:16.400 --> 0:02:20.280 She had significant disfiguration of her lips in her eyelids. 0:02:20.840 --> 0:02:24.320 Her vision was going to be questionable. She was going 0:02:24.360 --> 0:02:26.760 to be living without at least one of her arms 0:02:26.760 --> 0:02:27.880 from the elbow down. 0:02:28.200 --> 0:02:31.880 Even though the ventilator will keep her breathing. Andrea would 0:02:31.880 --> 0:02:34.519 need many surgeries to have a second chance at life 0:02:34.639 --> 0:02:38.519 outside of the hospital room. Because burns are so painful, 0:02:38.720 --> 0:02:42.520 and because she was being operated on so frequently, doctors 0:02:42.520 --> 0:02:46.920 put Andrea into a medically induced coma so she couldn't consent, 0:02:47.600 --> 0:02:53.200 not to the ventilator or the surgeries. So the hospital 0:02:53.200 --> 0:02:55.880 called her seventy nine year old father who lived nearby. 0:02:56.760 --> 0:02:59.480 He arrived at her bedside and he told doctors to 0:02:59.520 --> 0:03:02.840 go ahead with the ventilator and the surgeries to try 0:03:02.880 --> 0:03:06.560 to save his daughter's life. So doctors put Andrea on 0:03:06.639 --> 0:03:10.520 the ventilator, and that's when things got complicated. 0:03:11.240 --> 0:03:14.160 She had these friends who were adamant she would not 0:03:14.280 --> 0:03:15.800 want treatment to be continued. 0:03:16.600 --> 0:03:19.480 These friends showed up at the hospital burn unit too, 0:03:20.200 --> 0:03:23.079 and just down the hall from where Andrea lay unconscious. 0:03:23.200 --> 0:03:26.200 The friends argued with the medical team. 0:03:25.880 --> 0:03:27.960 They were out of I mean they were, you know, 0:03:28.160 --> 0:03:31.680 just that this would not being burned and with the 0:03:31.800 --> 0:03:35.400 kind of scarring she was going to face was not 0:03:35.720 --> 0:03:36.960 going to be okay with her. 0:03:37.960 --> 0:03:40.640 Andrea would not want to live without an arm, they said. 0:03:41.760 --> 0:03:44.400 She wouldn't want to wake up without a nose or ears, 0:03:44.560 --> 0:03:48.240 and no longer recognize her face. Her father may want 0:03:48.240 --> 0:03:51.360 her to live, but if Andrea could speak, she would say, 0:03:51.520 --> 0:03:56.520 let me die. This made doctors pause. Even if they 0:03:56.520 --> 0:03:59.760 could save her, the surgeries would affect her quality of life, 0:04:00.000 --> 0:04:02.640 and here were her close friends saying she wouldn't want 0:04:02.680 --> 0:04:05.480 to live that life. This was no longer just a 0:04:05.480 --> 0:04:11.440 tricky medical decision. It was an ethical problem. So the 0:04:11.480 --> 0:04:13.800 doctors asked Monica and her team for help. 0:04:14.360 --> 0:04:16.640 That team was like, look at these friends are so adamant. 0:04:16.920 --> 0:04:21.080 They're so adamant. What do we do. They were very 0:04:21.120 --> 0:04:24.040 convincing that she would not want to live this way. 0:04:24.560 --> 0:04:29.279 In fact, one of them grabbed our ethics fellow shook 0:04:29.320 --> 0:04:33.600 her and begged her to get the team to stop 0:04:33.640 --> 0:04:37.120 treating Andrea and stop torturing her. Legally, we know what 0:04:37.160 --> 0:04:39.680 we're supposed to do, but ethically it gets more complicated. 0:04:40.720 --> 0:04:44.520 While Andrew's case is severe, her situation is actually more 0:04:44.560 --> 0:04:48.440 common in hospitals than you might expect. At some point, 0:04:48.480 --> 0:04:51.599 you or someone you love will face a life changing 0:04:51.640 --> 0:04:54.720 medical decision. It might not be clear what is the 0:04:54.839 --> 0:04:58.800 right decision, And if you can't consent because you're unconscious 0:04:58.880 --> 0:05:02.800 or sedated, how should doctors and loved ones decide for you. 0:05:04.880 --> 0:05:08.680 I'm your host, Lauren Aurora Hutchinson. I'm the director of 0:05:08.720 --> 0:05:12.720 the Idea's Lab at the Johns Hopkins Berman Institute of Bioethics. 0:05:13.320 --> 0:05:16.279 I've spent years working on stories about the ways in 0:05:16.320 --> 0:05:19.760 which medicine and science show up in people's everyday lives. 0:05:20.320 --> 0:05:23.240 In this series, I'm going behind the scenes to discover 0:05:23.480 --> 0:05:27.560 how some of the most significant medical innovations have impacted 0:05:27.600 --> 0:05:31.440 people's lives and continued to whether it's saving lives or 0:05:31.480 --> 0:05:36.480 creating babies, New technologies are often accompanied by new ethical questions. 0:05:37.160 --> 0:05:40.160 Just because we can do something, does it mean we should? 0:05:40.880 --> 0:05:44.440 And who gets to make those kinds of decisions? When 0:05:44.440 --> 0:05:48.640 does it seem like playing God? In each episode, you'll 0:05:48.680 --> 0:05:54.440 hear directly from patients, leading bioethicists, scientists, and physicians as 0:05:54.480 --> 0:05:58.239 they grapple with these kinds of questions. On today's show, 0:05:58.520 --> 0:06:02.760 The Ventilator, it saves lives, but it also forces us 0:06:02.760 --> 0:06:06.159 to ask who should make life and death decisions for 0:06:06.279 --> 0:06:09.839 someone who can't tell us what they want. From Pushkin 0:06:09.920 --> 0:06:13.920 Industries and the Johns Hopkins Berman Institute of Bioethics, this 0:06:14.400 --> 0:06:21.280 is playing God, So who should make decisions on behalf 0:06:21.320 --> 0:06:25.200 of a patient who is heavily sedated or unconscious, and 0:06:25.279 --> 0:06:28.560 how do they make the right call. We'll return to 0:06:28.600 --> 0:06:31.479 Andrew's story and how decisions were made in her case 0:06:31.520 --> 0:06:35.440 a little later, but first I wanted to understand how 0:06:35.560 --> 0:06:39.400 experts even begin to address the ethical questions in cases 0:06:39.480 --> 0:06:43.320 like this. To find out, I asked Jeffrey Kahan. He's 0:06:43.360 --> 0:06:46.920 the director of the Johns Hopkins Berman Institute of Bioethics. 0:06:47.680 --> 0:06:50.880 Jeff is extremely well regarded in his field, and I'm 0:06:50.920 --> 0:06:55.119 not just saying that because he's my boss. So, Jeff, 0:06:55.160 --> 0:06:59.039 from a bioethics perspective, where do we start answering these 0:06:59.080 --> 0:07:00.200 types of questions? 0:07:00.600 --> 0:07:03.320 Well, first, I want to say thanks Lauren for taking 0:07:03.320 --> 0:07:05.600 the time to talk with me about these important questions, 0:07:05.600 --> 0:07:08.839 and not just because we work together. So first, I 0:07:08.839 --> 0:07:11.640 think we have to answer a question, which is what's 0:07:11.800 --> 0:07:16.119 the end goal here? And the end goal really should 0:07:16.200 --> 0:07:20.560 be preserving the autonomy of the individual patient, that is, 0:07:20.600 --> 0:07:24.080 the control that they have over themselves and their bodies. 0:07:24.560 --> 0:07:27.360 So in the case here with Andrea, it's about making 0:07:27.400 --> 0:07:29.920 sure that the decision that gets made is actually the 0:07:29.960 --> 0:07:32.960 one that Andrea would want exactly right. 0:07:33.040 --> 0:07:37.000 So it seems really obvious to us now in twenty 0:07:37.000 --> 0:07:39.880 twenty three talking to each other that we would ask 0:07:39.920 --> 0:07:43.920 the person first and foremost. But that wasn't always the 0:07:43.960 --> 0:07:48.200 way it was. The system used to be much more paternalistic. 0:07:48.560 --> 0:07:52.480 That is, the doctor knew best and patients just went 0:07:52.520 --> 0:07:57.200 along with whatever the doctor recommended. And so it was 0:07:57.240 --> 0:08:00.160 a sea change, really a big difference in the way 0:08:00.400 --> 0:08:05.120 the medical profession practices, and what more importantly, maybe patients 0:08:05.160 --> 0:08:10.440 expected that their decisions mattered, actually mattered more than the 0:08:10.480 --> 0:08:11.520 doctor's recommendation. 0:08:12.280 --> 0:08:14.760 So when did this change happen and what was it 0:08:14.760 --> 0:08:17.000 that made the change happen? When it did, why did 0:08:17.080 --> 0:08:19.040 doctors start considering patients' wishes? 0:08:19.360 --> 0:08:23.640 It really began in the nineteen sixties. American society was 0:08:23.680 --> 0:08:28.360 going through some pretty dramatic changes in the nineteen sixties 0:08:28.360 --> 0:08:32.120 into the early nineteen seventies. We had the Vietnam War raging, 0:08:32.200 --> 0:08:35.559 We had Watergate and the scandal that ensued. We had 0:08:36.040 --> 0:08:39.200 civil rights finally starting to take hold in a lot 0:08:39.280 --> 0:08:44.040 of political turmoil around that, and along with identification and 0:08:44.200 --> 0:08:48.559 finally implementation I guess of civil rights came a recognition 0:08:48.960 --> 0:08:52.400 that patients also had rights. Rights to decide for themselves 0:08:52.400 --> 0:08:55.520 and to make decisions about what should happen to their body. 0:08:56.000 --> 0:08:59.559 And along with that came some technologies which called it 0:08:59.600 --> 0:09:01.680 to question and how we would actually be able to 0:09:01.720 --> 0:09:04.920 allow patients to take control of decisions about their bodies. 0:09:05.679 --> 0:09:08.400 So, can you tell us about what kind of technologies 0:09:08.520 --> 0:09:11.240 it was and what ethical questions it came about. 0:09:12.200 --> 0:09:15.080 Well, one example of a technology that came along around 0:09:15.120 --> 0:09:17.880 the same time and challenge some of these ideas around 0:09:17.880 --> 0:09:22.520 patient autonomy was the ventilator. So a machine that allowed 0:09:22.840 --> 0:09:26.000 doctors to save the lives of people who are critically 0:09:26.040 --> 0:09:29.480 injured to before that technology was invented would have died 0:09:29.679 --> 0:09:32.560 like Andrea. The challenge is, if somebody is connected to 0:09:32.600 --> 0:09:36.560 a ventilator, they can't most of the time respond to questions, 0:09:36.559 --> 0:09:39.839 certainly not by speaking verbally, and most of the time 0:09:39.880 --> 0:09:44.000 they're unconscious, making it all but impossible to understand what 0:09:44.040 --> 0:09:46.920 their wishes might be when it comes to whether they 0:09:46.920 --> 0:09:50.400 should be kept alive when the quality of their life 0:09:50.440 --> 0:09:53.680 after they may or may not recover is so uncertain. 0:09:54.080 --> 0:09:57.640 And so a technology that allowed people to be kept 0:09:57.720 --> 0:10:02.119 alive in a way that just wasn't possible before undermined 0:10:02.200 --> 0:10:06.920 or made very difficult the idea of also respecting their autonomy. 0:10:07.320 --> 0:10:11.880 So I guess doctors were again playing God in the sense. 0:10:11.679 --> 0:10:15.400 And they were in a position to take God exactly. 0:10:15.520 --> 0:10:19.880 And the ethics question is, wow, should they be the 0:10:19.920 --> 0:10:23.320 ones who get to decide or how best to figure 0:10:23.320 --> 0:10:26.480 out what would be in the patient's interest, what the 0:10:26.520 --> 0:10:29.959 patient's desires would be? Who gets to decide? 0:10:30.360 --> 0:10:34.080 Okay, so how do we get from that to now? 0:10:34.400 --> 0:10:38.000 And how should these decisions get made? 0:10:38.200 --> 0:10:40.560 The idea of trying to make sure that people who 0:10:40.600 --> 0:10:43.280 could not answer the question about what they would want 0:10:43.320 --> 0:10:48.240 for themselves led to something called an advanced directive, so 0:10:48.880 --> 0:10:52.400 a document that articulates what people would or would not 0:10:53.120 --> 0:10:56.560 like if they found themselves in a situation like being 0:10:56.960 --> 0:11:00.800 maintained on a ventilator, usually by checking back, but also 0:11:00.840 --> 0:11:04.720 really importantly to identify somebody who can speak on their behalf. 0:11:05.280 --> 0:11:07.920 And then what happens if someone hasn't left anything behind 0:11:08.559 --> 0:11:11.240 like an advanced directive, so like what happened with Andrea. 0:11:12.920 --> 0:11:17.880 Unfortunately that's a very common occurrence. Then the question is 0:11:18.040 --> 0:11:22.080 and should be who can speak with knowledge about their wishes? 0:11:22.280 --> 0:11:23.640 What would they want? 0:11:24.520 --> 0:11:24.640 Not? 0:11:24.840 --> 0:11:27.280 What do we think is best for them, but rather 0:11:27.400 --> 0:11:30.160 what would they want? And if we don't know the 0:11:30.160 --> 0:11:33.480 answer to that question, then we have to ask a 0:11:33.480 --> 0:11:35.760 different question, which is what do we think would be 0:11:35.760 --> 0:11:38.120 best for them? If we don't know what they would want. 0:11:39.000 --> 0:11:42.640 The problem occurs when members of the family don't seem 0:11:42.679 --> 0:11:45.720 to know what the patient would want, or other people 0:11:45.760 --> 0:11:48.600 show up and say, I know this person better than 0:11:48.640 --> 0:11:51.920 the members of their family, and I can speak with 0:11:52.080 --> 0:11:55.400 knowledge about what they would want in a way that's better, 0:11:55.520 --> 0:11:59.600 more informed than the people who are related to them. 0:11:59.800 --> 0:12:02.360 So in Andrea's case, there was a lot of disagreement 0:12:02.400 --> 0:12:05.080 as we had. So what happens in those cases? 0:12:06.080 --> 0:12:09.440 Then there is a process. It's required as a matter 0:12:09.480 --> 0:12:13.559 of accreditation for hospitals that an ethics committee exists at 0:12:13.559 --> 0:12:16.160 the hospital and that there be a process for something 0:12:16.200 --> 0:12:20.000 called an ethics consultation and ethics consult So people like 0:12:20.480 --> 0:12:24.280 Monica in our story, who was a clinical ethics expert, 0:12:25.160 --> 0:12:31.079 social workers, psychologists, sometimes psychiatrists, members of the legal department 0:12:31.120 --> 0:12:33.880 in the hospital. All those people are sitting around at 0:12:33.960 --> 0:12:37.400 table in a conference room, being presented with a case 0:12:37.679 --> 0:12:40.559 and then trying to help advise how to proceed. 0:12:41.160 --> 0:12:43.439 So what would be used as evidence in those kind 0:12:43.440 --> 0:12:47.120 of consultations. Say, if Andrew's friends had had something written 0:12:47.160 --> 0:12:50.080 down that Andrea had said, would that help? 0:12:50.960 --> 0:12:54.400 I think it would help inform the process. You have 0:12:54.440 --> 0:12:57.160 to hope in a case like andreas, if there was 0:12:57.280 --> 0:13:00.760 concrete evidence that the friends could bring that it would 0:13:00.760 --> 0:13:05.040 be used to inform the conversation, hopefully inform the father's 0:13:05.160 --> 0:13:08.760 decision making. So it wouldn't change who gets to decide, 0:13:08.760 --> 0:13:12.720 but hopefully it would change the information that the person 0:13:12.720 --> 0:13:15.720 who gets to decide would use to make the decision 0:13:15.720 --> 0:13:17.040 on behalf of the patient. 0:13:17.960 --> 0:13:23.160 Okay, thanks Jeff. After the break, we'll find out how 0:13:23.240 --> 0:13:27.000 well Andrea thinks this system worked for her. How did 0:13:27.000 --> 0:13:30.400 the ethics team, her loved ones, and doctors decide what 0:13:30.520 --> 0:13:33.720 to do, and did she feel like they made the 0:13:33.760 --> 0:13:34.200 right call. 0:13:34.840 --> 0:13:39.320 So I think it's a very difficult question to answer. 0:13:40.559 --> 0:13:49.880 Wow, let's go back to the hospital burn unit. Andrea 0:13:50.000 --> 0:13:54.520 Rubin is covered in life threatening burns and is unconscious. 0:13:55.280 --> 0:13:59.280 Doctors say the ventilator and surgery are her only shot 0:13:59.360 --> 0:14:04.360 at staying. Andrea's dad is ready to move forward, but 0:14:04.480 --> 0:14:08.280 Andrea's friends are insistent that Andrea wouldn't want to be 0:14:08.400 --> 0:14:10.720 kept alive under these circumstances. 0:14:12.160 --> 0:14:14.839 They were so adamant. In fact, I had a nurse 0:14:14.880 --> 0:14:21.040 tell me years later in tears, years later thinking back 0:14:21.240 --> 0:14:26.080 about the stress that they were feeling, because the friends 0:14:26.080 --> 0:14:32.200 were so adamant that they were sending Andrea into a 0:14:32.240 --> 0:14:34.520 life she would not want to live again. 0:14:34.760 --> 0:14:40.280 Monica Garrick, the hospital bioethicist. According to Monica, Andrea's friends 0:14:40.320 --> 0:14:44.040 couldn't override the dad's authority to make the call. But 0:14:44.160 --> 0:14:47.360 if the friends had any evidence of Andrea's wishes, if 0:14:47.400 --> 0:14:50.120 there was a text from Andrea, if they could remember 0:14:50.120 --> 0:14:53.680 the details of a conversation, Monica could take that information 0:14:53.760 --> 0:14:54.680 to Andrea's dad. 0:14:55.080 --> 0:14:57.880 You know, we might have talked to her father and said, look, 0:14:58.040 --> 0:15:00.000 this is what we're being told, and this is an 0:15:00.080 --> 0:15:02.880 consistent with the fact you're willing to consent. Can you 0:15:03.120 --> 0:15:05.520 talk to us about why you're consenting on her behalf? 0:15:06.200 --> 0:15:09.680 But her friends didn't have any concrete evidence of Andrew's wishes, 0:15:10.280 --> 0:15:13.880 so Andrew was kept alive. She had nineteen surgeries while 0:15:13.920 --> 0:15:17.320 she was sedated, and around thirty nine more over the 0:15:17.360 --> 0:15:22.280 next five years, Andrew spent seven weeks in an induced 0:15:22.320 --> 0:15:25.320 coma and another month and a half in and out 0:15:25.360 --> 0:15:30.000 of consciousness, and slowly she began piecing together the story 0:15:30.120 --> 0:15:33.400 of what happened. She learned about what her friends did. 0:15:34.000 --> 0:15:38.840 They were fighting with my dad saying, you know, obviously 0:15:38.880 --> 0:15:42.960 you don't know your daughter. They really felt my father 0:15:44.520 --> 0:15:49.480 didn't understand that for a girl who forty nine years old, 0:15:50.320 --> 0:15:52.800 yeah she can walk, but she does does she want 0:15:52.800 --> 0:15:54.800 to walk through this life looking like this? 0:15:55.480 --> 0:15:58.240 She also learned what surgeons had done to save her. 0:15:58.920 --> 0:16:04.040 They made a makeshift eyelid, which just looks basically looks 0:16:04.080 --> 0:16:06.440 like I've been punched in the face right, so I 0:16:06.440 --> 0:16:09.840 have no vision in that eye. I lost three quarters 0:16:10.000 --> 0:16:14.760 of my nose. I had burns on my face, so 0:16:14.760 --> 0:16:17.440 I don't look anything like I used to do. A 0:16:17.440 --> 0:16:19.560 lot of scar tissues, so I can't really smile. 0:16:20.560 --> 0:16:23.280 The most she can manage now is a slight upcurl 0:16:23.320 --> 0:16:26.920 of her lips. Also, the burns on her scalp were 0:16:27.000 --> 0:16:30.760 so bad she can no longer grow her hair. Like 0:16:30.800 --> 0:16:35.200 a lot of people, hair was pretty important to Andrea 0:16:35.480 --> 0:16:39.000 even before the accident. She felt pretty insecure about it. 0:16:39.360 --> 0:16:42.080 I could never get my hair like long enough the 0:16:42.120 --> 0:16:44.080 way I wanted it, and I'm like once I discovered 0:16:44.120 --> 0:16:47.080 hair extensions, it was game over. I'm like, oh my god, 0:16:47.520 --> 0:16:51.400 I have long, full hair. Finally, I wasn't really like 0:16:52.200 --> 0:16:54.840 thrown on all the makeup and you know, having to 0:16:54.880 --> 0:16:57.080 look perfect. I took very good care of myself. I 0:16:57.080 --> 0:16:59.480 always worked out. I cared about what I looked like. 0:16:59.560 --> 0:17:02.400 But I wasn't all about it, you know, except when 0:17:02.440 --> 0:17:03.600 it came to the hair extensions. 0:17:03.600 --> 0:17:04.719 I was all about it. 0:17:05.560 --> 0:17:09.760 These days, Andrea wears a medical wig. It's long, straight 0:17:09.840 --> 0:17:13.280 and honeyblonde, just like her hair was before the accident. 0:17:14.359 --> 0:17:17.600 Of course, it's not exactly the same, and that's part 0:17:17.600 --> 0:17:19.880 of what her friends were worried about all those years ago, 0:17:20.720 --> 0:17:23.119 why they thought Andrea might not want to stay alive. 0:17:23.840 --> 0:17:27.240 What my friends were suggesting was extreme, but then again, 0:17:27.280 --> 0:17:28.840 what happened to me was very extreme. 0:17:29.359 --> 0:17:31.760 The three friends who spoke up for her at the hospital, 0:17:31.920 --> 0:17:35.960 all women, are still her closest friends today, and she 0:17:36.040 --> 0:17:39.000 says there are no hard feelings. They've talked about why 0:17:39.040 --> 0:17:41.439 they were so adamant that she shouldn't be kept alive. 0:17:42.240 --> 0:17:45.160 They're like, we just didn't. We didn't want to put 0:17:45.160 --> 0:17:47.359 you through this. We didn't think you'd be happy. We 0:17:47.359 --> 0:17:51.680 were speaking for you, as we thought you would have 0:17:51.720 --> 0:17:52.640 spoken for yourself. 0:17:53.480 --> 0:17:56.000 They aren't afraid to talk about what happened. They can 0:17:56.040 --> 0:17:57.120 even laugh about it. 0:17:57.960 --> 0:17:58.159 You know. 0:17:58.320 --> 0:18:01.159 It's like I always grant, Oh, I just would have 0:18:01.200 --> 0:18:02.480 you know, I would have killed you too. 0:18:06.080 --> 0:18:08.760 She also understands why her dad made the call to 0:18:08.840 --> 0:18:09.520 keep her alive. 0:18:10.440 --> 0:18:15.800 I am pretty sure it was a difficult call for him. 0:18:16.480 --> 0:18:19.159 But I think at the end of the day, when 0:18:19.240 --> 0:18:23.880 doctors said, hey, we probably can save her, I guess 0:18:23.680 --> 0:18:24.960 what's a parent going to do? 0:18:26.080 --> 0:18:28.800 But were her friends right when they assume the surgeries 0:18:28.840 --> 0:18:31.800 would compromise her quality of life so much that she 0:18:31.840 --> 0:18:33.720 wouldn't have wanted to survive. 0:18:34.359 --> 0:18:36.239 You know. I go back and forth with this. At 0:18:36.240 --> 0:18:38.800 the time, I think they were right. Of course, Now 0:18:38.800 --> 0:18:43.760 in hindsight, I'm so happy I'm alive. A lot has 0:18:43.840 --> 0:18:47.560 changed on the outside, but my life really is still 0:18:47.880 --> 0:18:48.920 pretty remarkable. 0:18:51.920 --> 0:18:54.720 Andrea is happy she's alive, which is pretty much the 0:18:54.760 --> 0:18:57.800 best case scenario for someone who didn't have their wishes 0:18:57.840 --> 0:19:02.200 spelled out in advance. And again we're not picking on Andrea. 0:19:02.760 --> 0:19:05.200 Most people don't have any of this stuff worked out. 0:19:05.760 --> 0:19:08.440 I tell everybody, get your stuff together, because I didn't 0:19:08.440 --> 0:19:13.720 have anything together. Nothing and everybody had a long, hard 0:19:13.760 --> 0:19:14.880 journey because of it. 0:19:15.680 --> 0:19:18.960 And if you're thinking, great, I'll just write an advanced directive. 0:19:19.119 --> 0:19:22.960 Problem solved. It's still hard to predict how you feel 0:19:22.960 --> 0:19:26.760 in every situation. You might not understand all the options 0:19:26.800 --> 0:19:30.320 available to you, especially if you're dealing with a life 0:19:30.320 --> 0:19:37.400 saving medical technology like the ventilator. The ventilator was an issue. 0:19:37.400 --> 0:19:39.360 In another case, Monica got involved in. 0:19:40.760 --> 0:19:45.399 Our service, got consulted by a surgeon and said, I 0:19:45.440 --> 0:19:49.080 don't have an issue now, but I want you involved 0:19:49.480 --> 0:19:51.800 now because this is a little complicated. 0:19:52.480 --> 0:19:54.840 The surgeon told her he had a patient who might 0:19:54.880 --> 0:19:56.760 need to be on a ventilator for just a day 0:19:56.840 --> 0:19:58.960 or two before he was well enough to breathe on 0:19:59.000 --> 0:20:03.000 his own. The problem. The patient had been very explicit 0:20:03.119 --> 0:20:05.840 about his desire to never be put on a ventilator. 0:20:06.359 --> 0:20:11.280 He had written it on the backs of manila envelopes, 0:20:11.800 --> 0:20:14.800 in notebooks and like sort of scrap pieces of paper. 0:20:15.600 --> 0:20:18.159 So I don't know what had happened in his life, 0:20:18.200 --> 0:20:21.720 but he was very sure he did not ever want 0:20:21.760 --> 0:20:22.920 to be on a breathing machine. 0:20:23.560 --> 0:20:26.000 It was up to his daughter to decide what to do, 0:20:26.640 --> 0:20:30.159 and she knew his dance, but it wasn't clear to 0:20:30.240 --> 0:20:32.840 her if he'd understood that being on a ventilator can 0:20:32.880 --> 0:20:36.920 be temporary. Did he really mean never or just not forever. 0:20:38.520 --> 0:20:41.720 The daughter reached out to the hospital's bioethics consult team. 0:20:42.200 --> 0:20:44.760 She wanted help from experts like Monica. 0:20:45.280 --> 0:20:47.119 And so, what do I do if you're telling me 0:20:47.160 --> 0:20:50.960 it's temporary and that it'll save his life and that 0:20:51.119 --> 0:20:55.320 without it he could die? But he said never? What 0:20:55.480 --> 0:20:56.080 do I do? 0:20:57.119 --> 0:21:01.560 Remember Jeffrey Kahn, our bioethicist from earlier, as he pointed out, 0:21:01.600 --> 0:21:04.919 we can't always predict what a patient would decide for themselves. 0:21:05.600 --> 0:21:08.120 In those cases, we have to decide what would be 0:21:08.119 --> 0:21:11.760 best for them, what would be in the patient's best interest. 0:21:12.760 --> 0:21:15.199 Monica and the patient's daughter got the input of the 0:21:15.240 --> 0:21:18.280 medical team and decided that it would be best for 0:21:18.359 --> 0:21:22.720 him to be put temporarily on a ventilator. Luckily, the 0:21:22.840 --> 0:21:25.760 daughter didn't have to act on that decision. Her dad 0:21:25.800 --> 0:21:27.480 didn't need to be put on a ventilator. 0:21:27.640 --> 0:21:30.960 He got better and he came to a few days later, 0:21:31.760 --> 0:21:34.239 and when he woke up, the first thing out of 0:21:34.240 --> 0:21:37.520 her mouth to him was, Dad, you know, this is 0:21:37.560 --> 0:21:40.520 what happened, and they almost had to do this to you. 0:21:41.040 --> 0:21:43.119 But you've said repeatedly and you wrote it down that 0:21:43.160 --> 0:21:45.359 you never wanted to be on a ventilator. What should 0:21:45.400 --> 0:21:47.240 I do in the future if this ever happens again? 0:21:47.400 --> 0:21:49.120 And he said, well, why all means say yes. 0:21:50.160 --> 0:21:53.800 The idea of acting in the patient's best interests accounts 0:21:53.800 --> 0:21:57.800 for some of the gray areas in advanced directives, because 0:21:57.840 --> 0:22:00.679 even if you have an advanced directive, it's hard to 0:22:00.760 --> 0:22:03.200 know if you feel the same way when you're in 0:22:03.240 --> 0:22:04.760 a life or death situation. 0:22:05.520 --> 0:22:08.639 People when they get close to death, if they've said 0:22:08.760 --> 0:22:11.520 I don't want any interventions, sometimes say well, now give 0:22:11.560 --> 0:22:14.040 them to me. I've changed my mind. And some people 0:22:14.040 --> 0:22:16.399 who get close to death who have said, you know, 0:22:16.480 --> 0:22:20.080 give me every intervention get close and say no, no, no, 0:22:20.240 --> 0:22:22.959 I don't want them. Now I'm ready to go. So 0:22:23.600 --> 0:22:29.359 all this decision stuff at the bedside gets really it's 0:22:29.720 --> 0:22:34.119 extremely complicated. You have the patient who sometimes is unreliable, 0:22:34.160 --> 0:22:36.320 not because they're not good people or not because they 0:22:36.320 --> 0:22:38.639 haven't thought about things, but because we change our minds 0:22:38.680 --> 0:22:39.960 all the time about everything. 0:22:40.640 --> 0:22:44.679 Andrea understands this as well as anyone I know. 0:22:44.720 --> 0:22:47.720 If it were nine years ago and somebody said, Okay, 0:22:47.720 --> 0:22:50.000 here's what's going to happen. You know you're going to 0:22:50.040 --> 0:22:54.560 be completely disfigured, blah blah blah. Would could you do it? 0:22:54.720 --> 0:22:57.440 My answer to be, heck no, don't even think about it. 0:22:57.520 --> 0:22:59.720 Save your time and enerchanges. Let me go. 0:23:00.600 --> 0:23:05.240 Back then, physical appearance was pretty important to Andrea. It 0:23:05.280 --> 0:23:08.600 played a big role in her quality of life. Today, 0:23:09.080 --> 0:23:13.159 Andrea looks completely different, but her quality of life is 0:23:13.240 --> 0:23:17.080 better than she could have imagined. She's glad to be alive. 0:23:18.640 --> 0:23:21.879 Monica is trying to help Andrea make a plan in 0:23:21.920 --> 0:23:25.119 case she ever ends up in another life or death situation. 0:23:26.400 --> 0:23:29.639 She's encouraging Andrea to prepare an advance directive. 0:23:31.240 --> 0:23:34.200 Had a conversation with her about what happens if she suffers, 0:23:34.359 --> 0:23:39.000 you know, really devastating seespine injury and ends up with quadriplegia. 0:23:39.440 --> 0:23:41.800 Then what And then she's told me that she wouldn't 0:23:41.840 --> 0:23:44.480