October 24, 2023 • 29 mins
One day, when she was only 39, bar manager Jamie Imhof collapsed. While she lay in a coma, doctors told her family that they knew how to save her life: she needed an immediate liver transplant. But, transplant centers follow an informal “rule” when it comes to patients whose livers fail due to heavy alcohol use. Jamie would not be eligible for a new liver for six months. For a case as severe as Jamie’s, waiting six months would be a death sentence. We hear about the “six month rule” for liver transplants and why one Johns Hopkins surgeon says it’s a practice based on stigma, not science.
Show notes:
In addition to Jamie Imhof, this episode features interviews with:
Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics
Andrew Cameron, Surgeon-in-chief at Johns Hopkins Hospital, where Jamie had her surgery
If you or your loved one is struggling with alcohol use, visit the SAMHSA website to find help or call 1-800-662-HELP (4357).
The United Organ Transplant Service (UNOS) helps distribute organs for transplant across the country. You can read more about how livers are distributed at their website.
To learn more about Andrew Cameron’s program that challenges the six month rule, read this article from Hopkins Medicine Magazine.
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:02):
I was in a room, a completely white room with
a brown desk, and there was a older gentleman there
in a sense, and there was a contract. There was
like this piece of paper and a pen, and these
words were specifically uttered to me. You can either choose
not to accept this and just pass peacefully and not
worry about anything, or if you take this gift, you'll
(00:24):
be in the worst pain that you've ever experienced in
your entire life. And I remember sitting there and just
being stubborn like I am, And I said, oh, well,
I think I know about pain.
Speaker 2 (00:38):
Jamie Imhoff was almost certainly dreaming. Who was she bargaining with?
Was it God? As her life hung in the balance,
she was heavily sedated in the hospital, drifting in and
out of consciousness. A month earlier, she'd collapse on the
floor of her apartment, her body contorting from intense cramps.
(01:00):
Off to Jamie's collapse, doctors at her Baltimore hospital put
her on life support. Her diagnosis multiple organ failure. Most importantly,
her liver had stopped working. She was only thirty eight
years old.
Speaker 1 (01:14):
They called my family right away, and pretty much to
all my family, I was unsabable and to come out
here and plan to book the funeral.
Speaker 2 (01:23):
Acute liver failure is a rare but life threatening condition.
In Jamie's case, it was very obvious what had cause
all that damage.
Speaker 1 (01:33):
A typical day of drinking at the time I collapsed
started around early morning, maybe seven am eight am. I
always had a bottle of Arka next to my bed
when I woke up. If I did not take that
initial first drink, I couldn't function, and then from there
the rest of the day would be maintained on a
certain level of alcohol in my body until.
Speaker 3 (01:56):
I went to bed.
Speaker 1 (01:57):
But at that point there was no pleasure in doing stuff.
This was literally what we call maintenance drinking.
Speaker 2 (02:02):
Jamie was aware she had a problem with drinking. She'd
been to rehab and managed to get sober for a
few months at a time, but she worked as a
bar manager. When life got stressful, she went right back
to old habits, and that's how she ended up in
the hospital. At this point, her only chance at survival
was a liver transplant, but because alcohol use is what
(02:25):
destroyed her liver, the doctors told Jamie's family she wasn't
eligible for a transplant, not for another six months.
Speaker 1 (02:34):
My family. Upon hearing the news, they were not very happy.
The idea of being denied care didn't make any sense
to them.
Speaker 2 (02:43):
Jamie's family spent the next several days making phone calls,
desperate to find a transplant center that would agree to
save her life, but no luck. Eventually, they gave up
and started speaking with a chaplain. They wanted his help
deciding whether or not to let Jamie die.
Speaker 1 (03:03):
The doctors told my family that I could stay on
life support for a definite period of time, but they
did not recommend doing so.
Speaker 2 (03:12):
Now, clearly we're hearing from Jamie in the present day.
She did manage to survive, but how had she come
so close to dying? Doctors knew the life saving treatment
she needed a live a transplant, so why wouldn't they
give it to her? And how is that ethical? I'm
(03:33):
Laurena Rora Hutchinson. I'm the director of the Ideas Lab
at the Johns Hopkins Berman Institute of Bioethics. This season,
I'm going behind the scenes to discover how some of
the most significant medical innovations have impacted people's lives and
continue to whether it's saving lives or creating babies. A
(03:53):
new technology is usually waiting in the wings, along with
a whole entourage of ethical questions. On today's show, liver transplants.
They're often the only option to keep people with liver
failure alive, but since there aren't enough livers to go around,
transplant centers have to decide what's the most ethical way
(04:17):
to determine who gets them first, and when and what if.
Solving for one ethical dilemma creates a whole host of
new ethical problems for patients and families. From Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics, this is
playing god. To get some perspective on Jamie's story, I
(04:43):
called up my colleague, bioethicist Jeffrey Kahn. If you're a
regular listener, you've heard him on our show before. So, Jeff,
why was it that someone like Jamie, who clearly desperately
needed a new liver, was initially not going to get
a transplant.
Speaker 4 (04:59):
It's a good question, Lauren, and to answer it, we
need to go back to the early days of being
able to transplant solid organs. Those are kidneys, livers, lungs, hearts,
and there just aren't enough and never have been enough.
Donated organs to transplant to everybody who needs one. In
the case of livers, people who need a liver transplant
(05:21):
are really, really sick and can only wait for a
very short time before either being transplanted and surviving or
not being transplanted and dying. And so people in the
transplant community and then people from public policy and ethics
like me got pulled in to help decide how to
allocate who should get, who should not, who can wait,
(05:43):
who in the end won't actually receive a donated organ.
This is a recurring issue in ethics of transplant and
bioethics generally. When there's not enough of a thing to
go around, who gets access to it and therefore who
does not?
Speaker 2 (05:58):
So how is the decision made about who gets the
priority for these livers?
Speaker 4 (06:03):
Every organ has a somewhat different system. For kidneys, there's
a waiting list, and that's because we can ask people
to wait and be on a technology called dialysis until
their number gets called. For livers, it's a different story.
It's a weightless but it's really a scored weightless. So
(06:23):
the higher your score, the sicker you are, and therefore
the higher on the priority list you get.
Speaker 2 (06:29):
And so how does the system treat people like Jamie
who need a new liver because of a history of
harmful alcohol use.
Speaker 4 (06:36):
The issue of needing a liver transplant after abuse of
alcohol or overuse of alcohol created an additional layer of
ethical dilemma. So on top of the question about what
do we do when we don't have enough livers for
all the people who need a liver transplant, layered over
that is the idea that the reason that the person
(06:59):
needs a liver transplant owes to their behavior. And so
the question then is, well, what's to prevent them if
they get a transplant from doing the same thing that
they did to cause the need for the first transplant?
And so that's a kind of societal utilitarian question, is
this the best way to allocate this very scarce resource?
(07:22):
And the question about behavior and responsibility is not a
trivial question in the context of liver transplant because alcohol
related liver disease is now the number one reason that
adults in the US need a liver transplant, and these
patients tend to be really, really sick by the time
they end up coming to the doctor and seeking treatment,
(07:43):
and so they become top of the list's highest priority
when they show up, and that creates or could create
some really understandable resentment. Wait, why is it that this
person who undertook this behavior did this to themselves? Why
should they get a liver transplant before somebody with cancer
(08:03):
or some child that may have been born with a
disease that's certainly not within their control, But isn't harmful?
Speaker 2 (08:10):
Alcohol use also considered a disease.
Speaker 4 (08:13):
It is, And as we do more research about addiction
and behavior, I think it's becoming more clear that there's
a disease aspect, there's also some behavioral and controllable aspects,
but that it's very complicated. There are genetic components, there
are environmental components, there are socioeconomic components, and so these
(08:37):
are complicated areas where it doesn't make sense to just
sort of point to someone and say they're responsible for
the bad health effects of their behavior.
Speaker 2 (08:46):
So what approach have transplant centers come up with allocating
livers to people with and without a history of alcohol use?
How is it fair to people with them?
Speaker 4 (08:56):
Without going back now a number of decades to the
nineteen eighties, transplant centers that do liver transplants in the
US and really has become a global practice. Have required
patients with the history of alcohol abuse who need a
liver transplant to show that they can be sober no
use of alcohol for at least six months before they're
(09:18):
eligible for a transplant. That's been named the so called
six month rule. So, in effect, the rule requires patients
to go off and cure themselves of one disease alcohol
abuse before we'll treat them for another disease. That doesn't
seem fair, but that's the approach that has been implemented.
There were actually at least three reasons that transplant centers
(09:42):
and the policy makers around liver transplantation decided that this
was the right approach. First, there was a thought that
if patients stopped using alcohol for a period of time,
their livers might actually come back and heal themselves. The
second and maybe more important reason for some period of
sobriety was the view that they're blameworthy, like they brought
(10:06):
it on themselves, and we shouldn't reward somebody who brought
something on themselves by giving them access to a life
saving liver transplant when there are other people who didn't
behave badly also waiting. You know, we better make sure
that the people who were going to offer this very
scarce life saving treatment to are not going to do
(10:27):
the same thing that required the transplant in the first place.
And then the third reason is a sort of you know,
what will the members of society think about donating their
organs when they see that the people who are getting
livers are the people who abused alcohol? Will that make
people less likely to be willing to be organ donors.
(10:48):
So all of that played into the decision about, you know,
what to do with somebody like Jamie, how can we
still think about transplants for them in a way that
ethically acceptable?
Speaker 2 (11:02):
So what have we learned from having this six month
rule in place?
Speaker 4 (11:05):
Well, the first thing that we learned is that making
people wait six months is a death sentence for half
of them. It turns out that the liver does not
regenerate when given a chance to be alcohol free. It's
just that people who have abused alcohol have effectively killed
their liver, and so making them wait for six months
is they can't survive it. Also, it turns out research
(11:28):
has shown that the six month rule is a bad
predictor of whether someone will stay sober after a transplant
and it turns out it has no effect on people's
willingness to donate based on survey research.
Speaker 2 (11:40):
Wow, so people have been dying because of the six
month rule even though it doesn't really do what it's
supposed to do effectively.
Speaker 4 (11:48):
Yes, and it's not even a rule, it's a practice.
It's all the transplant centers adhere to it, but it's
actually not required. And you know, at the time that
it was implement it made sense for all the reasons
that we have discussed to use the few livers that
became available in the best possible way, and it took
(12:12):
a while for research to be performed and information to
come in that would help inform whether that was the
right policy. But it's really unclear that there wouldn't be
unintended negative consequences if the six month rule were to
be completely abandoned. So we really just don't know all
(12:32):
the implications of stepping away from or completely abandoning the
six month rule, and that's something that needs more, maybe
more nuance and more information before we decide what the
right policy should be.
Speaker 2 (12:47):
After the break, we'll hear from someone who is challenging
the six month rule. The doctor who gave Jamie Imhoff
a second chance at life.
Speaker 3 (12:57):
I am in the second chance business, and I believe
even the ability of people to with multiple chances and
multiple tries to get it.
Speaker 2 (13:05):
Right playing God will be right back.
Speaker 3 (13:14):
So when I started liver transplants, everybody knew the rules
and the rules were agreed upon.
Speaker 2 (13:20):
This is Andrew Cameron. He's a liver transplant surgeon at
Johns Hopkins University. He knows all about the eligibility rules
for liver transplants. These aren't cut and dry legal rules,
more like common practices.
Speaker 3 (13:36):
To get a liver transplant after excessive alcohol use, you
needed to be sober or abstinent for six months. That
was the rule, and we all accepted it.
Speaker 2 (13:49):
But these days Andrew is doing something almost unheard of
in the transplant community. At his transplant center in Baltimore,
he routinely, intentionally systematic breaks the six month rule. The
first time he broke this rule, or bent it, as
he says, was fifteen years ago. A patient showed up
(14:11):
at Johns Hopkins' deathly ill with liver failure and a
history of heavy alcohol use.
Speaker 3 (14:17):
And I remember our team going to take a look
at him and saying oh, well, unfortunately this is an
easy one. He's been drinking recently and so isn't eligible
for a liver transplant. And we didn't think much more
of it. But as we were leaving his room, his
family grabbed us and said, you know you're not going anywhere.
You know, we are demand that year reconsider. And it
(14:40):
was pretty tough to argue with him. In fact, it
was impossible to argue with them, and they made such
a compelling case that as a team, we got together
and considered whether we ought to bend the rules in
this case, and we struggled with that decision, but as
a team, we decided to bend the rules and we
went ahead with a transplant.
Speaker 2 (15:02):
Andrew now runs a program at Johns Hopkins that treats
people with cases similar to that patient. It was this
program that helped Jamie get her new liver. Can you
tell me a bit more about the research that you're
doing with people with a history of heavy alcohol use
and their ability to get transplants?
Speaker 3 (15:21):
Sure? So that there was an exciting New England Journal
paper in which a group of liver transplant centers in
France transplanted patients like the one I just described and
in fact, a relatively low percentage of those patients when
followed carefully, ever, went back to drinking. Now, at Johns Hopkins,
we decided to start a very similar pilot program, and
(15:43):
we've now transplanted about one hundred and thirty patients without
a six month waiting period. And when we compare them
to a group of patients that got transplanted that Hopkins
at the same time that did have that six month
waiting period, there was no hard data that suggested that
that rule made a lot of sense.
Speaker 2 (16:05):
And so does that mean that any patient with alcohol
related liver disease is given a transplant?
Speaker 3 (16:12):
Well, thanks for asking that question, because people hear some
of these stories and say, oh, there's no rules, and
there are rules. There need to be rules. They just
not this past fail test, single question have you drank
in the last six months. Rather, it is a look
at factors that would meaningfully predict your performance post transplant,
(16:33):
like do you have insight into your need to change
your drinking? Do you have a social support network that
will help you after your transplant? Are you willing to
participate in programs that would help you stay abstinent after
your transplant?
Speaker 2 (16:48):
So you talked about insight, and I just want to
pick up on that, because how do you measure insight?
Speaker 3 (16:56):
It's tough, isn't it. So we all maybe have a
feel for it. We all maybe can think of times
in our own lives when something happened that was dramatic
enough to cause behavior change. So for some folks that
drink alcohol, that may be getting arrested or a dui.
It may be a loved one leaving them a divorce
(17:18):
for example, if they have expressed insight, if they have
expressed a willingness to participate in programs that will allow
them to have success after transplant, those are all favorable factors.
You could imagine almost a group decision by multiple caregivers
looking at multiple factors that predict performance after transplant and
(17:39):
making as best we can, and it's not perfect, a logical, fair,
humane decision about whether this person can get through a
liver transplant and do well on the back end, if
the answer is yes or maybe yes, we want to
go ahead and give them the benefit of the doubt.
Speaker 2 (17:58):
That's great. So I want to talk about Jamie. You know,
we heard Jamie's story and when she was taken into hospital,
she was in a coma, and so in that situation,
how would you determine her insight?
Speaker 3 (18:15):
It's tough, You're right. We didn't have the luxury of
speaking with her, but we could talk to her family,
so we couldn't hear it directly from her. But we
knew that she had tried in the past to achieve
sobriety and it had success in doing so. And we
knew that she had some profound life stressors that had
(18:35):
caused relapse. And that is a common story, and that
is not a story that we cannot work with after transplant.
So a lot of things spoke to Jamie's favor enough
to give her the benefit of the doubt and say,
this is a young person that we're not ready to
give up on.
Speaker 2 (18:55):
And could you say a bit more about social support. So,
for example, if someone doesn't have a partner, does that
mean that they're kind of like go lower in the list?
Speaker 3 (19:03):
Or a social support is anyone who will help you
after transplant with the things you need to do to
take good care of your organ transplant. It could be
a partner, It could be a family member, it could
be a friend, it could be somebody from your AA group.
It is somebody who was willing to help. The kind
(19:27):
of help you're going to need after transplant is I
don't feel well. You may have to take me into
the hospital. I have an appointment tomorrow, I need to
get my labs checked out. It can also be more
than that. It can be I'm not feeling great, I'm worried.
I'm going to have a relapse. Can you help me?
It would take a person that couldn't identify a single
(19:50):
soul to help them to get excluded from transplant. And
even in those scenarios, we have advocates and social workers
and transplant psychologists that work with our patients to try
and mobilize somebody. So it's not really about saying yes
or no. It's about saying, if we do this, how
(20:14):
can we predict success afterwards? What can we do to
help you be successful afterwards? And therefore get.
Speaker 2 (20:22):
To yes and yeah, that's great. So how in this
program do you measure success?
Speaker 3 (20:30):
The gold standard for success after Oregon transplant, as measured
and reported by the government is one year patient survival,
and in the large group of patients that we quote
took a chance on and bent the rules for one
year later ninety four percent of them were alive and well,
and that is as high or higher than any other
(20:53):
indication for liver transplant that you could name. And then
we measure how many of those folks relapse in terms
of using alcohol, and probably twenty percent total have any
relapse at all, as measured even by a single drink.
And what we saw was that when we worked together,
(21:14):
when we utilized extra resources to help them stay sober,
even the small group of folks that return to drinking
were able to ultimately return to abstinence and sobriety with
extra help.
Speaker 2 (21:30):
So the people close to death store, they're high on
the priority list, and then there are going to be
other people on that list, for example, a young person
with a congenital liver disease who might not be as
close to death's door, but they're still waiting on that
list for a liver transplant. Someone might ask you, why
would someone like Jamie with a history of heavy alcohol
(21:53):
use get that liver before their loved one who's also
on the waiting list.
Speaker 3 (21:59):
These are very difficult questions. So far, society has decided
that the people that can't wait need to go first,
and that the people that can wait ought to wait
until it's their turn. A better system would be if
we had enough organs to go around for everybody. That's
not the way it is now. So as you suggest
(22:21):
somebody who's born with a congenital anomaly, we would of
course say, oh, well, this isn't your fault. You need
to go to the front of the line. In this case,
we were looking at folks that had a claim to
the front of the line, and we were saying, but
you did it to yourself, you can't go to the
head of line. That was the only case in which
we excluded folks from the recognition that they needed an
(22:44):
emergent surgery to save their life. And that's probably not
a modern way of looking at something like alcohol used disorder.
That's treating it more as a character flaw than a disease.
You know, I think I have the advantage in this
discussion of having met these people. They're real people, they are,
(23:04):
they have families, they have they're they're indistinguishable from folks
that are listening to this conversation. And it just occurred
to all of us that a second chance is something
we all probably are going to need at some point
in our lives. And if the rules of the game
are stacked against you or were never made clear or unfair.
(23:25):
That's just that's just not fair play. And we have
been able to see how well people can do when
given a second chance. So I guess I would ask
people to withhold judgment maybe, and and imagine if it
was your brother, if it was your your partner, if
(23:45):
it was your kid that needed a life saving transplant,
if there was a way for doctors to save your
kid's life, and somebody tried to say we could, but
we're just not going to. You wouldn't stay and for it.
You wouldn't stand for it, and we're not standing for
it either.
Speaker 2 (24:04):
Okay, So yeah, you've convinced me. And I'm just wondering
how your approach has been received by other transplant centers.
Have you experienced any resistance there?
Speaker 3 (24:17):
When we look at how widely this new approach to
transplant has been adopted in the United States, the answer
is disappointing. There are probably one hundred and fifty liver
transplant centers in the United States, and I would say
somewhere between a third and a half have done one
(24:37):
of these transplants without a six month waiting period. And
I think some of the reasons are is that, ah,
these patients are heavy lifting. It takes extra resources to
evaluate them before transplant and to take care of them
after transplant. And I think there is also safety in
(24:58):
traditional rules. It is just easier to say, I'm not
going to get into all those controversies. I play by
the rules. Six months is a rule. I understand. I'm
on safe ground.
Speaker 2 (25:12):
And do you think that there is anything that might
make clinics wary of doing these kinds of transfers.
Speaker 3 (25:21):
I think the barriers are stigma. I think alcohol occupies
a very special place in our society which is difficult
to unpack. This patient drank too much. They did it
to themselves. That that's sort of an old fashioned, historic
way at looking at alcohol use, which I think our
country has not moved on from. It's interesting Europe rapidly
(25:44):
adopted this new system or criteria for who should get
a liver transplant for alcohol use, perhaps a more open
minded or liberal approach to the problem. The United States
did not. It's still coming.
Speaker 2 (26:00):
Andrew hopes that transplant centers across the US will see
the results of his pilot program and rethink the six
month ban. His patient Jamie Imhoff is working towards the
same goal.
Speaker 1 (26:13):
I hope to break the stigma that such individuals are
worth saving when a lot of programs deem them unsavable.
Speaker 2 (26:24):
Jamie spends a lot of her time these days raising
awareness about the six month ban through social media campaigns
and public events.
Speaker 1 (26:33):
It's been more than.
Speaker 2 (26:33):
A year since the day she collapsed. She's grateful to
be alive, and she doesn't take it for granted.
Speaker 1 (26:40):
I feel my duty is to make sure that overall,
not just physically but mentally, I'm as healthy as I
can be for the person who gave me this new life.
Speaker 2 (26:51):
She says. One of the things that helps us stay
healthy has been letting go of the sense of shame
she used to feel about her drinking.
Speaker 1 (26:59):
If you have guilt, shame, resentment, these are the things
that we'll make you. We'll drive you back to drinking.
You're going to fail the transplant in itself, and you're
going to fail the donor.
Speaker 2 (27:09):
Jamie is still sober, and she plans to stay that way.
She thinks of her sobriety as a gift that's just
as life changing is her liver.
Speaker 1 (27:19):
So when I wake up in the morning now I
don't feel sick. I'm able to get up right away.
For example, this morning went up and I already walked
two miles today and got my coffee, and so I
can get up and look at the trees blooming, or
actually I can even smell the fresh air. Those are
a lot of the side effects that you lose in
full on alcoholism. So sobriety overall is just one hundred
(27:44):
times better.
Speaker 2 (27:46):
Next week, I'm playing God. What if there was an
eBay for kidneys? We'll hear from a transplant recipient who
thinks we should legalize the sale of organs in the
US and even provide compensation to incentivize living organ donation.
But is it ever ethical to pay someone for a
(28:07):
body part? Thanks so much to our guests Jamie Imhoff
and Andrew Cameron. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Vaughan is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan. Our editors are
(28:31):
Karen Schakerjee and Kate Parkinson Morgan. Theme music and mixing
by Echo Mountain Engineering. Support from Sarah Brugere and Amanda Kaiwang.
Show art by Sean Karney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(28:53):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rora Hutchinson.
Come back next week for more Playing God. As you've
(29:17):
heard through the series, I'm the director of the Ideas
Lab at the Johns Hopkins Berman Institute of Bioethics. At
the Ideas Lab, we are exploring new innovative ways of
telling stories about the intersection of ethics, science, medicine, and
public health. As well as podcasts, we do screenwriting, films,
and immersive experiences. To get involved, visit Bioethics dot Jhu
(29:41):
dot edu, Forward Slash Ideas Lab
I was in a room, a completely white room with
a brown desk, and there was a older gentleman there
in a sense, and there was a contract. There was
like this piece of paper and a pen, and these
words were specifically uttered to me. You can either choose
not to accept this and just pass peacefully and not
worry about anything, or if you take this gift, you'll
(00:24):
be in the worst pain that you've ever experienced in
your entire life. And I remember sitting there and just
being stubborn like I am, And I said, oh, well,
I think I know about pain.
Speaker 2 (00:38):
Jamie Imhoff was almost certainly dreaming. Who was she bargaining with?
Was it God? As her life hung in the balance,
she was heavily sedated in the hospital, drifting in and
out of consciousness. A month earlier, she'd collapse on the
floor of her apartment, her body contorting from intense cramps.
(01:00):
Off to Jamie's collapse, doctors at her Baltimore hospital put
her on life support. Her diagnosis multiple organ failure. Most importantly,
her liver had stopped working. She was only thirty eight
years old.
Speaker 1 (01:14):
They called my family right away, and pretty much to
all my family, I was unsabable and to come out
here and plan to book the funeral.
Speaker 2 (01:23):
Acute liver failure is a rare but life threatening condition.
In Jamie's case, it was very obvious what had cause
all that damage.
Speaker 1 (01:33):
A typical day of drinking at the time I collapsed
started around early morning, maybe seven am eight am. I
always had a bottle of Arka next to my bed
when I woke up. If I did not take that
initial first drink, I couldn't function, and then from there
the rest of the day would be maintained on a
certain level of alcohol in my body until.
Speaker 3 (01:56):
I went to bed.
Speaker 1 (01:57):
But at that point there was no pleasure in doing stuff.
This was literally what we call maintenance drinking.
Speaker 2 (02:02):
Jamie was aware she had a problem with drinking. She'd
been to rehab and managed to get sober for a
few months at a time, but she worked as a
bar manager. When life got stressful, she went right back
to old habits, and that's how she ended up in
the hospital. At this point, her only chance at survival
was a liver transplant, but because alcohol use is what
(02:25):
destroyed her liver, the doctors told Jamie's family she wasn't
eligible for a transplant, not for another six months.
Speaker 1 (02:34):
My family. Upon hearing the news, they were not very happy.
The idea of being denied care didn't make any sense
to them.
Speaker 2 (02:43):
Jamie's family spent the next several days making phone calls,
desperate to find a transplant center that would agree to
save her life, but no luck. Eventually, they gave up
and started speaking with a chaplain. They wanted his help
deciding whether or not to let Jamie die.
Speaker 1 (03:03):
The doctors told my family that I could stay on
life support for a definite period of time, but they
did not recommend doing so.
Speaker 2 (03:12):
Now, clearly we're hearing from Jamie in the present day.
She did manage to survive, but how had she come
so close to dying? Doctors knew the life saving treatment
she needed a live a transplant, so why wouldn't they
give it to her? And how is that ethical? I'm
(03:33):
Laurena Rora Hutchinson. I'm the director of the Ideas Lab
at the Johns Hopkins Berman Institute of Bioethics. This season,
I'm going behind the scenes to discover how some of
the most significant medical innovations have impacted people's lives and
continue to whether it's saving lives or creating babies. A
(03:53):
new technology is usually waiting in the wings, along with
a whole entourage of ethical questions. On today's show, liver transplants.
They're often the only option to keep people with liver
failure alive, but since there aren't enough livers to go around,
transplant centers have to decide what's the most ethical way
(04:17):
to determine who gets them first, and when and what if.
Solving for one ethical dilemma creates a whole host of
new ethical problems for patients and families. From Pushkin Industries
and the Johns Hopkins Berman Institute of Bioethics, this is
playing god. To get some perspective on Jamie's story, I
(04:43):
called up my colleague, bioethicist Jeffrey Kahn. If you're a
regular listener, you've heard him on our show before. So, Jeff,
why was it that someone like Jamie, who clearly desperately
needed a new liver, was initially not going to get
a transplant.
Speaker 4 (04:59):
It's a good question, Lauren, and to answer it, we
need to go back to the early days of being
able to transplant solid organs. Those are kidneys, livers, lungs, hearts,
and there just aren't enough and never have been enough.
Donated organs to transplant to everybody who needs one. In
the case of livers, people who need a liver transplant
(05:21):
are really, really sick and can only wait for a
very short time before either being transplanted and surviving or
not being transplanted and dying. And so people in the
transplant community and then people from public policy and ethics
like me got pulled in to help decide how to
allocate who should get, who should not, who can wait,
(05:43):
who in the end won't actually receive a donated organ.
This is a recurring issue in ethics of transplant and
bioethics generally. When there's not enough of a thing to
go around, who gets access to it and therefore who
does not?
Speaker 2 (05:58):
So how is the decision made about who gets the
priority for these livers?
Speaker 4 (06:03):
Every organ has a somewhat different system. For kidneys, there's
a waiting list, and that's because we can ask people
to wait and be on a technology called dialysis until
their number gets called. For livers, it's a different story.
It's a weightless but it's really a scored weightless. So
(06:23):
the higher your score, the sicker you are, and therefore
the higher on the priority list you get.
Speaker 2 (06:29):
And so how does the system treat people like Jamie
who need a new liver because of a history of
harmful alcohol use.
Speaker 4 (06:36):
The issue of needing a liver transplant after abuse of
alcohol or overuse of alcohol created an additional layer of
ethical dilemma. So on top of the question about what
do we do when we don't have enough livers for
all the people who need a liver transplant, layered over
that is the idea that the reason that the person
(06:59):
needs a liver transplant owes to their behavior. And so
the question then is, well, what's to prevent them if
they get a transplant from doing the same thing that
they did to cause the need for the first transplant?
And so that's a kind of societal utilitarian question, is
this the best way to allocate this very scarce resource?
(07:22):
And the question about behavior and responsibility is not a
trivial question in the context of liver transplant because alcohol
related liver disease is now the number one reason that
adults in the US need a liver transplant, and these
patients tend to be really, really sick by the time
they end up coming to the doctor and seeking treatment,
(07:43):
and so they become top of the list's highest priority
when they show up, and that creates or could create
some really understandable resentment. Wait, why is it that this
person who undertook this behavior did this to themselves? Why
should they get a liver transplant before somebody with cancer
(08:03):
or some child that may have been born with a
disease that's certainly not within their control, But isn't harmful?
Speaker 2 (08:10):
Alcohol use also considered a disease.
Speaker 4 (08:13):
It is, And as we do more research about addiction
and behavior, I think it's becoming more clear that there's
a disease aspect, there's also some behavioral and controllable aspects,
but that it's very complicated. There are genetic components, there
are environmental components, there are socioeconomic components, and so these
(08:37):
are complicated areas where it doesn't make sense to just
sort of point to someone and say they're responsible for
the bad health effects of their behavior.
Speaker 2 (08:46):
So what approach have transplant centers come up with allocating
livers to people with and without a history of alcohol use?
How is it fair to people with them?
Speaker 4 (08:56):
Without going back now a number of decades to the
nineteen eighties, transplant centers that do liver transplants in the
US and really has become a global practice. Have required
patients with the history of alcohol abuse who need a
liver transplant to show that they can be sober no
use of alcohol for at least six months before they're
(09:18):
eligible for a transplant. That's been named the so called
six month rule. So, in effect, the rule requires patients
to go off and cure themselves of one disease alcohol
abuse before we'll treat them for another disease. That doesn't
seem fair, but that's the approach that has been implemented.
There were actually at least three reasons that transplant centers
(09:42):
and the policy makers around liver transplantation decided that this
was the right approach. First, there was a thought that
if patients stopped using alcohol for a period of time,
their livers might actually come back and heal themselves. The
second and maybe more important reason for some period of
sobriety was the view that they're blameworthy, like they brought
(10:06):
it on themselves, and we shouldn't reward somebody who brought
something on themselves by giving them access to a life
saving liver transplant when there are other people who didn't
behave badly also waiting. You know, we better make sure
that the people who were going to offer this very
scarce life saving treatment to are not going to do
(10:27):
the same thing that required the transplant in the first place.
And then the third reason is a sort of you know,
what will the members of society think about donating their
organs when they see that the people who are getting
livers are the people who abused alcohol? Will that make
people less likely to be willing to be organ donors.
(10:48):
So all of that played into the decision about, you know,
what to do with somebody like Jamie, how can we
still think about transplants for them in a way that
ethically acceptable?
Speaker 2 (11:02):
So what have we learned from having this six month
rule in place?
Speaker 4 (11:05):
Well, the first thing that we learned is that making
people wait six months is a death sentence for half
of them. It turns out that the liver does not
regenerate when given a chance to be alcohol free. It's
just that people who have abused alcohol have effectively killed
their liver, and so making them wait for six months
is they can't survive it. Also, it turns out research
(11:28):
has shown that the six month rule is a bad
predictor of whether someone will stay sober after a transplant
and it turns out it has no effect on people's
willingness to donate based on survey research.
Speaker 2 (11:40):
Wow, so people have been dying because of the six
month rule even though it doesn't really do what it's
supposed to do effectively.
Speaker 4 (11:48):
Yes, and it's not even a rule, it's a practice.
It's all the transplant centers adhere to it, but it's
actually not required. And you know, at the time that
it was implement it made sense for all the reasons
that we have discussed to use the few livers that
became available in the best possible way, and it took
(12:12):
a while for research to be performed and information to
come in that would help inform whether that was the
right policy. But it's really unclear that there wouldn't be
unintended negative consequences if the six month rule were to
be completely abandoned. So we really just don't know all
(12:32):
the implications of stepping away from or completely abandoning the
six month rule, and that's something that needs more, maybe
more nuance and more information before we decide what the
right policy should be.
Speaker 2 (12:47):
After the break, we'll hear from someone who is challenging
the six month rule. The doctor who gave Jamie Imhoff
a second chance at life.
Speaker 3 (12:57):
I am in the second chance business, and I believe
even the ability of people to with multiple chances and
multiple tries to get it.
Speaker 2 (13:05):
Right playing God will be right back.
Speaker 3 (13:14):
So when I started liver transplants, everybody knew the rules
and the rules were agreed upon.
Speaker 2 (13:20):
This is Andrew Cameron. He's a liver transplant surgeon at
Johns Hopkins University. He knows all about the eligibility rules
for liver transplants. These aren't cut and dry legal rules,
more like common practices.
Speaker 3 (13:36):
To get a liver transplant after excessive alcohol use, you
needed to be sober or abstinent for six months. That
was the rule, and we all accepted it.
Speaker 2 (13:49):
But these days Andrew is doing something almost unheard of
in the transplant community. At his transplant center in Baltimore,
he routinely, intentionally systematic breaks the six month rule. The
first time he broke this rule, or bent it, as
he says, was fifteen years ago. A patient showed up
(14:11):
at Johns Hopkins' deathly ill with liver failure and a
history of heavy alcohol use.
Speaker 3 (14:17):
And I remember our team going to take a look
at him and saying oh, well, unfortunately this is an
easy one. He's been drinking recently and so isn't eligible
for a liver transplant. And we didn't think much more
of it. But as we were leaving his room, his
family grabbed us and said, you know you're not going anywhere.
You know, we are demand that year reconsider. And it
(14:40):
was pretty tough to argue with him. In fact, it
was impossible to argue with them, and they made such
a compelling case that as a team, we got together
and considered whether we ought to bend the rules in
this case, and we struggled with that decision, but as
a team, we decided to bend the rules and we
went ahead with a transplant.
Speaker 2 (15:02):
Andrew now runs a program at Johns Hopkins that treats
people with cases similar to that patient. It was this
program that helped Jamie get her new liver. Can you
tell me a bit more about the research that you're
doing with people with a history of heavy alcohol use
and their ability to get transplants?
Speaker 3 (15:21):
Sure? So that there was an exciting New England Journal
paper in which a group of liver transplant centers in
France transplanted patients like the one I just described and
in fact, a relatively low percentage of those patients when
followed carefully, ever, went back to drinking. Now, at Johns Hopkins,
we decided to start a very similar pilot program, and
(15:43):
we've now transplanted about one hundred and thirty patients without
a six month waiting period. And when we compare them
to a group of patients that got transplanted that Hopkins
at the same time that did have that six month
waiting period, there was no hard data that suggested that
that rule made a lot of sense.
Speaker 2 (16:05):
And so does that mean that any patient with alcohol
related liver disease is given a transplant?
Speaker 3 (16:12):
Well, thanks for asking that question, because people hear some
of these stories and say, oh, there's no rules, and
there are rules. There need to be rules. They just
not this past fail test, single question have you drank
in the last six months. Rather, it is a look
at factors that would meaningfully predict your performance post transplant,
(16:33):
like do you have insight into your need to change
your drinking? Do you have a social support network that
will help you after your transplant? Are you willing to
participate in programs that would help you stay abstinent after
your transplant?
Speaker 2 (16:48):
So you talked about insight, and I just want to
pick up on that, because how do you measure insight?
Speaker 3 (16:56):
It's tough, isn't it. So we all maybe have a
feel for it. We all maybe can think of times
in our own lives when something happened that was dramatic
enough to cause behavior change. So for some folks that
drink alcohol, that may be getting arrested or a dui.
It may be a loved one leaving them a divorce
(17:18):
for example, if they have expressed insight, if they have
expressed a willingness to participate in programs that will allow
them to have success after transplant, those are all favorable factors.
You could imagine almost a group decision by multiple caregivers
looking at multiple factors that predict performance after transplant and
(17:39):
making as best we can, and it's not perfect, a logical, fair,
humane decision about whether this person can get through a
liver transplant and do well on the back end, if
the answer is yes or maybe yes, we want to
go ahead and give them the benefit of the doubt.
Speaker 2 (17:58):
That's great. So I want to talk about Jamie. You know,
we heard Jamie's story and when she was taken into hospital,
she was in a coma, and so in that situation,
how would you determine her insight?
Speaker 3 (18:15):
It's tough, You're right. We didn't have the luxury of
speaking with her, but we could talk to her family,
so we couldn't hear it directly from her. But we
knew that she had tried in the past to achieve
sobriety and it had success in doing so. And we
knew that she had some profound life stressors that had
(18:35):
caused relapse. And that is a common story, and that
is not a story that we cannot work with after transplant.
So a lot of things spoke to Jamie's favor enough
to give her the benefit of the doubt and say,
this is a young person that we're not ready to
give up on.
Speaker 2 (18:55):
And could you say a bit more about social support. So,
for example, if someone doesn't have a partner, does that
mean that they're kind of like go lower in the list?
Speaker 3 (19:03):
Or a social support is anyone who will help you
after transplant with the things you need to do to
take good care of your organ transplant. It could be
a partner, It could be a family member, it could
be a friend, it could be somebody from your AA group.
It is somebody who was willing to help. The kind
(19:27):
of help you're going to need after transplant is I
don't feel well. You may have to take me into
the hospital. I have an appointment tomorrow, I need to
get my labs checked out. It can also be more
than that. It can be I'm not feeling great, I'm worried.
I'm going to have a relapse. Can you help me?
It would take a person that couldn't identify a single
(19:50):
soul to help them to get excluded from transplant. And
even in those scenarios, we have advocates and social workers
and transplant psychologists that work with our patients to try
and mobilize somebody. So it's not really about saying yes
or no. It's about saying, if we do this, how
(20:14):
can we predict success afterwards? What can we do to
help you be successful afterwards? And therefore get.
Speaker 2 (20:22):
To yes and yeah, that's great. So how in this
program do you measure success?
Speaker 3 (20:30):
The gold standard for success after Oregon transplant, as measured
and reported by the government is one year patient survival,
and in the large group of patients that we quote
took a chance on and bent the rules for one
year later ninety four percent of them were alive and well,
and that is as high or higher than any other
(20:53):
indication for liver transplant that you could name. And then
we measure how many of those folks relapse in terms
of using alcohol, and probably twenty percent total have any
relapse at all, as measured even by a single drink.
And what we saw was that when we worked together,
(21:14):
when we utilized extra resources to help them stay sober,
even the small group of folks that return to drinking
were able to ultimately return to abstinence and sobriety with
extra help.
Speaker 2 (21:30):
So the people close to death store, they're high on
the priority list, and then there are going to be
other people on that list, for example, a young person
with a congenital liver disease who might not be as
close to death's door, but they're still waiting on that
list for a liver transplant. Someone might ask you, why
would someone like Jamie with a history of heavy alcohol
(21:53):
use get that liver before their loved one who's also
on the waiting list.
Speaker 3 (21:59):
These are very difficult questions. So far, society has decided
that the people that can't wait need to go first,
and that the people that can wait ought to wait
until it's their turn. A better system would be if
we had enough organs to go around for everybody. That's
not the way it is now. So as you suggest
(22:21):
somebody who's born with a congenital anomaly, we would of
course say, oh, well, this isn't your fault. You need
to go to the front of the line. In this case,
we were looking at folks that had a claim to
the front of the line, and we were saying, but
you did it to yourself, you can't go to the
head of line. That was the only case in which
we excluded folks from the recognition that they needed an
(22:44):
emergent surgery to save their life. And that's probably not
a modern way of looking at something like alcohol used disorder.
That's treating it more as a character flaw than a disease.
You know, I think I have the advantage in this
discussion of having met these people. They're real people, they are,
(23:04):
they have families, they have they're they're indistinguishable from folks
that are listening to this conversation. And it just occurred
to all of us that a second chance is something
we all probably are going to need at some point
in our lives. And if the rules of the game
are stacked against you or were never made clear or unfair.
(23:25):
That's just that's just not fair play. And we have
been able to see how well people can do when
given a second chance. So I guess I would ask
people to withhold judgment maybe, and and imagine if it
was your brother, if it was your your partner, if
(23:45):
it was your kid that needed a life saving transplant,
if there was a way for doctors to save your
kid's life, and somebody tried to say we could, but
we're just not going to. You wouldn't stay and for it.
You wouldn't stand for it, and we're not standing for
it either.
Speaker 2 (24:04):
Okay, So yeah, you've convinced me. And I'm just wondering
how your approach has been received by other transplant centers.
Have you experienced any resistance there?
Speaker 3 (24:17):
When we look at how widely this new approach to
transplant has been adopted in the United States, the answer
is disappointing. There are probably one hundred and fifty liver
transplant centers in the United States, and I would say
somewhere between a third and a half have done one
(24:37):
of these transplants without a six month waiting period. And
I think some of the reasons are is that, ah,
these patients are heavy lifting. It takes extra resources to
evaluate them before transplant and to take care of them
after transplant. And I think there is also safety in
(24:58):
traditional rules. It is just easier to say, I'm not
going to get into all those controversies. I play by
the rules. Six months is a rule. I understand. I'm
on safe ground.
Speaker 2 (25:12):
And do you think that there is anything that might
make clinics wary of doing these kinds of transfers.
Speaker 3 (25:21):
I think the barriers are stigma. I think alcohol occupies
a very special place in our society which is difficult
to unpack. This patient drank too much. They did it
to themselves. That that's sort of an old fashioned, historic
way at looking at alcohol use, which I think our
country has not moved on from. It's interesting Europe rapidly
(25:44):
adopted this new system or criteria for who should get
a liver transplant for alcohol use, perhaps a more open
minded or liberal approach to the problem. The United States
did not. It's still coming.
Speaker 2 (26:00):
Andrew hopes that transplant centers across the US will see
the results of his pilot program and rethink the six
month ban. His patient Jamie Imhoff is working towards the
same goal.
Speaker 1 (26:13):
I hope to break the stigma that such individuals are
worth saving when a lot of programs deem them unsavable.
Speaker 2 (26:24):
Jamie spends a lot of her time these days raising
awareness about the six month ban through social media campaigns
and public events.
Speaker 1 (26:33):
It's been more than.
Speaker 2 (26:33):
A year since the day she collapsed. She's grateful to
be alive, and she doesn't take it for granted.
Speaker 1 (26:40):
I feel my duty is to make sure that overall,
not just physically but mentally, I'm as healthy as I
can be for the person who gave me this new life.
Speaker 2 (26:51):
She says. One of the things that helps us stay
healthy has been letting go of the sense of shame
she used to feel about her drinking.
Speaker 1 (26:59):
If you have guilt, shame, resentment, these are the things
that we'll make you. We'll drive you back to drinking.
You're going to fail the transplant in itself, and you're
going to fail the donor.
Speaker 2 (27:09):
Jamie is still sober, and she plans to stay that way.
She thinks of her sobriety as a gift that's just
as life changing is her liver.
Speaker 1 (27:19):
So when I wake up in the morning now I
don't feel sick. I'm able to get up right away.
For example, this morning went up and I already walked
two miles today and got my coffee, and so I
can get up and look at the trees blooming, or
actually I can even smell the fresh air. Those are
a lot of the side effects that you lose in
full on alcoholism. So sobriety overall is just one hundred
(27:44):
times better.
Speaker 2 (27:46):
Next week, I'm playing God. What if there was an
eBay for kidneys? We'll hear from a transplant recipient who
thinks we should legalize the sale of organs in the
US and even provide compensation to incentivize living organ donation.
But is it ever ethical to pay someone for a
(28:07):
body part? Thanks so much to our guests Jamie Imhoff
and Andrew Cameron. Playing God is a co production of
Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics.
Emily Vaughan is our lead producer. This episode was also
produced by Sophie Crane and Lucy Sullivan. Our editors are
(28:31):
Karen Schakerjee and Kate Parkinson Morgan. Theme music and mixing
by Echo Mountain Engineering. Support from Sarah Brugere and Amanda Kaiwang.
Show art by Sean Karney, fact checking by David jar
and Arthur Gompertz. Our executive producer is Justine Lang at
(28:53):
the Johns Hopkins Berman Institute of Bioethics. Our executive producers
are Jeffrey Kahan and Anna Mastriani, working with Amelia Hood.
Funding provided by the Greenwall Foundation. I'm Laurena Rora Hutchinson.
Come back next week for more Playing God. As you've
(29:17):
heard through the series, I'm the director of the Ideas
Lab at the Johns Hopkins Berman Institute of Bioethics. At
the Ideas Lab, we are exploring new innovative ways of
telling stories about the intersection of ethics, science, medicine, and
public health. As well as podcasts, we do screenwriting, films,
and immersive experiences. To get involved, visit Bioethics dot Jhu
(29:41):
dot edu, Forward Slash Ideas Lab
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