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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
00:00:02
Speaker 1: Can you imagine having to make a decision about who gets access to something that could save their lives, and as a result, who doesn't get access. Would you use a lottery system an algorithm? Would you make a call on a first come, first serve basis? Well, in the nineteen sixties in Seattle, a committee, almost like a jury of local citizens were asked to do just that.
00:00:28
Speaker 2: When first invited to serve on the committee, I was very uncomfortable, feeling that I was taking the place of God.
00:00:36
Speaker 1: We're about to hear from Rick Mazel, a medical historian at the University of Houston. A few years back. Rick was doing some research when he came across this story.
00:00:47
Speaker 3: I'm a good and for punishment, I like topics that are difficult to research and find.
00:00:54
Speaker 1: He found this one article about the committee in Seattle that caught his attention.
00:01:00
Speaker 3: I was curious as to why I didn't know that much about it. For whatever reason, historians have stirred queer a bit of this conversation. It was really a fascinating but difficult scenario to engage.
00:01:15
Speaker 1: So Rick kept digging. He found out the story started with the grand opening of a medical clinic. The treatment the clinic provided was highly specialized and time consuming. So time consuming that patients had to go in twice a week and get hooked up to a machine overnight.
00:01:33
Speaker 2: All night while they read or talk, or work or sleep. The entire blood content of each patient as being circulated through an artificial kidney and clean and pumped back into the body again.
00:01:49
Speaker 1: These clips from an NBC documentary called Who Shall Live, filmed a few years after the Seattle Artificial Kidney Center opened. It aired in nineteen sixty five on Nash Television and created quite a stir. The kidney Center was revolutionary. It was the first place in the whole world to offer long term kidney dialysis, a brand new type of life saving treatment. There was just one problem.
00:02:17
Speaker 2: The cold, hard fact of the matter is, there are just so many places available on the kidney machine, and there are more applicants than places. Somebody has got to be left out, and somebody has got to decide who shall live and who shall die?
00:02:34
Speaker 1: Yikes, who shall live and who shall die? When Rick saw who the people were who would determine that, he was shocked. The Kidney Center put seven seemingly random people in charge. They would later come to be known as the God Squad, the ones to determine the fates of thousands of their neighbors. It was up to then to decide which would be saved.
00:03:01
Speaker 3: I thought it was pretty unbelievable that they would have lay people and community people making this decision.
00:03:10
Speaker 1: This whole thing, this attempt to figure out who should have access, became so controversial, such a pivotal point that it would become a wake up call for the need for a more transparent system. This is a story that paved the way to what is now known as bioethics. I'm your host, Lauren Aurora Hutchinson. I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. In this season a Playing God, we went behind the scenes to discover how some of the most significant medical innovations impacted people's lives and continued to whether it's saving lives or creating babies, a new technology was usually waiting in the wings, along with a multitude of ethical questions. We looked at where we draw the line, should we draw the line, what's right and what's wrong when it comes to our bodies, And we turned to bioethicists to answer these questions. But in this bonus prequel episode, we're doing something different. We're going back in time to immerse you in one of the most important foundational stories of modern bioethics from Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. This is playing God. By the nineteen fifties, if someone had kidney disease, they could be surgically connected to a machine called an artificial kidney, also known as the dialysis machine. Dialysis at the time worked well for anyone whose kidneys needed help for just a short while, but people whose kidneys had failed needed ongoing dialysis for life or they would die. Connecting to a dialysis machine did a lot of damage to blood vessels, so there were only so many sessions a patient could do. In nineteen sixty, a young Seattle nephrologist named Belding Scribner decided to do something about it. He designed a little U shaped piece of hollow teflon called a shunt. It could be left in a patient's arm or leg permanently to use again and again to connect to a dialysis machine. This meant chronic kidney disease would no longer be a death sentence. I just want to pause here for a moment, because even with the Scribner shunt, it wasn't possible to treat everyone. So who should be granted access when there isn't enough of something life saving to go around? This question around the allocation of resources is one of the most central questions in bioethics that's still being asked about all sorts of things today. What's the best way, or rather, what's the least bad way to resolve this kind of dilemma?
00:06:02
Speaker 4: Well, here's what.
00:06:03
Speaker 1: Happened in this case. In nineteen sixty two, the Seattle Artificial Kidney Center opened at Swedish Hospital. Initially, the center had just three machines and could only treat up to nine patients. Each person selected would need to continue to be treated for the rest of their life. At the time, chronic kidney disease killed tens of thousands of people in the US each year. Regular dialysis was their only shot at staying alive. So how would the center choose which patients would get a second chance at life? To begin? Belding and the hospitals set up an initial screening process to whittle down the thousands of patients to hundreds, and in order to even be considered for a spot in the first place, each candidate needed a referral from their doctor. Rick says, we.
00:06:54
Speaker 3: Don't know if they accepted referrals from black physicians, and there were not many black physicians in the nineteen sixties, which is part of what I argue is problematic about the committee. You know, Seattle is still a city that is highly racialized, highly segregated. It's not Alabama or Mississippi, but there were still segregation in hospitals, which.
00:07:17
Speaker 1: Of course had implications as to who would get referrals to even be on the list. The center then had specific criteria. Patients had to be between fifteen and forty five years old. The hospital advised that children might not be able to handle ongoing long term dialysis both mentally and physically. Those of the right age then had to show they could pay for three years of the treatment upfront thirty thousand dollars the equivalent of three hundred thousand dollars today, and they had to be able to access the center twice a week.
00:07:55
Speaker 3: Perhaps most problematic is they could not have underlying conditions, so diabetes, hypertension, all of those things would disqualify you from the possibility of chronic dialysis.
00:08:07
Speaker 1: The medical advisory committee also interviewed the candidates to get a sense of their psychological health.
00:08:13
Speaker 3: So people who were emotionally unstable, who were poor, who did not have certain kinds of jobs, who were unmarried, who did not go to church were largely considered inherently biologically flawed by the medical committee. Those were the individuals who were not emotionally stable enough to deal with long term dealysis.
00:08:36
Speaker 1: The treatment center evaluated about fifty candidates for each available slot. They would then whittle that number down and hand the final decision over to the God Squad. The God squad would then have to choose one person out of about four candidates per slot. The people on the God squad were not experts in kidney disease or dialysis. Only two of them were medical professionals.
00:09:00
Speaker 2: I am a banker, I am a surgeon, I am a lawyer, I am a physician, I am a labor leader, I am a housewife, I am a clergy many.
00:09:15
Speaker 1: Belding, Scribner and his colleagues decided it was unfair to burden physicians with making the final call. Their reason since all of the candidates on their list would benefit from the treatment and were deemed good candidates, the choice of who to save was now really more of a social one than a medical one. I can't help noticing where they drew the line between this being a social decision rather than a medical one, because to me, it seems like so many of these factors were actually social anyway. It was at this point they decided to turn it over to the ordinary people of Seattle. It was their job to evaluate these patients and determine who should live and who should die.
00:09:58
Speaker 3: There was a woman who was up for evaluation and husband and sons said that she was no longer cleaning the house. That was part of what they brought up to evaluate her as to her worthiness of dialysis.
00:10:12
Speaker 1: We'll be right back after the break. The God Squad's official name was the Admissions and Policies Committee of the Seattle Artificial Kidney Center at Swedish Hospital.
00:10:29
Speaker 3: They, of course say that it represents a cross section of the Seattle population. It was mostly men, mostly middle.
00:10:38
Speaker 1: Clayer's administrators from the kidney center hand selected the God Squad members. That's right, hand selected. The hospital gave the committee an information packet on each candidate, with their medical records, psychological evaluations, financial information, even letters of reference. One of the doctors who briefed the committee later said, we told them frankly, that there were no guidelines. They were on their own. We really dumped it on them. The committee decided to review every piece of biographical information they could get their hands on. They also decided to enlist other people to help them, a social worker and a psychologist. What they were looking to determine was what they called a person's social worth.
00:11:24
Speaker 3: One of the criteria that the Patient Advisory Committee often considered was the common good.
00:11:30
Speaker 1: Rick says, if you read through the committee's records, you can piece together what the members thought made someone worthy.
00:11:37
Speaker 3: Being a white collar worker was better than being a blue collar worker. A woman who was a known prostitute was rejected for a woman who was a mother of four. Another one that sticks out is a young man who was considered to be, and this is the term that they use, a never do or will a playboy, and so he does not have the right temperament or morality, then he's not worthy of theallises.
00:12:04
Speaker 1: The committee members were kept anonymous, and their work happened behind closed doors, But in nineteen sixty two, a prominent reporter named Shana Alexander revealed their inner workings to the world in a Life magazine article. Amazingly, all of the committee members agreed to be interviewed as long as they were not identified. The committee even re enacted one of their first liberations so Shana could hear how they sounded in action. Their conversations made it clear that to committee members, what made someone worthy of saving was a matter of personal opinion. We had voice actors read from the article.
00:12:44
Speaker 5: If we are still looking for the men with the highest potential of service to society, I think we must consider that the chemist and the accountant have the finest educational backgrounds of all five candidates.
00:12:55
Speaker 6: How do the rest? Do you feel about number three, the small businessman with three children. I'm impressed that this doctor took special pains to mention this man as active in church work. This is an indication to me of character and moral strength.
00:13:09
Speaker 7: For the children's sake, we've got to reckon with the surviving parents' opportunity to remarry, and a woman with three children has a better chance to find a new husband than a very young widow with six children.
00:13:21
Speaker 6: How can we possibly be sure of that?
00:13:25
Speaker 1: Shanea's article not surprisingly caused outrage.
00:13:29
Speaker 3: Lawyers at the time, you know, argue that it was really just a way for physicians to avoid the responsibility of making a difficult decision that they did not want to make and that nobody wants to make.
00:13:43
Speaker 1: Mostly, Rick says, people pointed out the obvious flaws with a metric worthiness.
00:13:48
Speaker 3: Someone who is, you know, an activist in the civil rights movement. That's a social good, but it might not fit within the ideals of what it is that they think as a social good. So you could have a respected business person who was still unethical in a number of different ways.
00:14:05
Speaker 1: In the end, the committee selected the first group of patients, among them a physicist, an engineer, a car salesman, an aircraft worker, and an oil company executive. By most accounts, the God Squad kept meeting until nineteen seventy two. That year, Congress passed legislation making dialysis available to everyone whose kidneys have failed, but the committee lived on in public imagination. Many people didn't get the life saving treatment they needed because they were deemed less worthy. The God Squad were people who just had to make up the rules as they went along. There was no template yet for best practices or ethical guidance in making these kinds of decisions.
00:14:59
Speaker 4: They were starting from s, you know, and I think that we have a much more robust literature. You know, we have a history of bioethecal analysis to lean on now, and of course we're still improving over time and how we think about these things.
00:15:12
Speaker 1: This is Kate Butler. She's a clinical neprologist based in Seattle, and she says, what is key is to design a system that's fair. But of course fairness can be understood in lots of different ways.
00:15:26
Speaker 4: Do we want to make the very best use of resources in terms of saving the most lives in terms of having the most life years lived? Do we want to consider quality of life years lived? And if so, who decides on quality? And or do we want to make sure that we're allocating resources in a way that feels equitable to us? And again, who is that us? Who's making the decision about whether the system is equitable.
00:15:54
Speaker 1: Kate told us that nowadays systems are based on ethical foundations. For example, one way of doing things would be to prioritize recipients who we expect to live the longest after a transplant, which would be a utilitarian approach. Or you could use a lottery so that everyone on the list gets an equal chance of a transplant, which would be based on the principle of equality. I mean, which one do you think would be most fair? Kate gave an example the National Weight List for kidneys, which is a modified version of waiting until your number is.
00:16:27
Speaker 4: Called, and that process has been worked out over decades as a collaboration between clinicians, bioethicists, the community by way of community forums.
00:16:39
Speaker 1: There's an organization that monitors the systems to see if it's working the way it's supposed to. It's called the United Network for organ Sharing. In twenty fourteen, they discovered a flaw. The waiting list wasn't accounting for some groups of people, mainly people of color, having a harder time getting on the list in the first place. In bioethics, equity is a key principle. It's important to account for disadvantage or underrepresentation. So they made a change.
00:17:10
Speaker 4: There was an intentional effort to change the WEIGHTLISS criteria to give you retroactive time for time since you started on dialysis, so people would get points for the time spent on the witlist or how long they had been on dialysis, whichever is longer.
00:17:26
Speaker 1: The change was apparent within months. The system still isn't perfect, but Kate says, as an example of how the field of bioethics has evolved since the time of the God Squad.
00:17:37
Speaker 4: There's more to medicine than just clinical analysis of individual cases that considering the bioethical implications of these decisions was necessary and important. I think that's why people refer to this example as the birth of bioethics today.
00:17:56
Speaker 1: It's part of the process to consider ethics in medical advance.
00:18:01
Speaker 4: Any situation in which you have resource scarcity for something so consequential as healthcare, there's going to be tragedy, right There's going to be someone who doesn't get the care you want for them. We're not going to be able to design a perfect system.
00:18:18
Speaker 1: As we have heard from this series, the landscape is ever shifting. Every time there's a new medical innovation, there's a whole new set of ethical questions. If you've enjoyed playing God, then we're going to have plenty more stories like this coming out of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. Playing God is a co production the Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Special thanks to our guests in this episode, Rick Mozelle and Kate Butler. Emily Vaughan is our lead producer. Production support from Sophie Crane and Lucy Sullivan. Our editors are Karen Chakerjee and Kate Parkinson Morgan. Theme music and mixing by Echo Mountain, Engineering support from Sarah Brugare and Amanda Kaiwang. Show art by Sean Carney, 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 Amelia Hood and with support from Susan Snead, Aaron Henkin, Abigail Brickler, Kim bikermer Anna Oakes, and Jamie Smith. Funding provided by the green Wall Foundation. Special thanks to voice coach Vicky Merrick. This is our last episode, so we'd like to thank some of the many people at Pushkin who've supported this show throughout the season, including Jacob Weisber, Heather Fame, John Snarz, Letal Malad, Greta Cohne, Carl Migliori, Jasmine Perez, Eric Sandler, Jordan mcmill Isabella Navarez, Nicole op Den Bosch, Maya Kanig, Jake Flanagan, Owen Miller, David Glover, Nina Lawrence, Mia LaBelle, and Ian Petsa. To learn more about Bioethics and the issues presented in this series, please visit Bioethics dot jhu dot edu forward, slash Playing God. I'm Laurena Rora Hutchinson. Thanks for listening to 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 j u dot ed u, slash Playing God, or find us on social media at Burman Institute