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