October 10, 2023 • 28 mins
While Andrea Rubin lay unconscious and severely burned after a car fire, her father told doctors to do everything they could to keep her alive. She would need many surgeries. Her quality of life wouldn’t be the same. Her friends were outraged. They told doctors that Andrea would not want to live that way. While Andrea was being kept alive on a ventilator, her loved ones fought about what would be best for her. In this episode, we explore how medical decisions are made for patients who are incapable of deciding for themselves.
Show notes:
In addition to Andrea Rubin, this episode features interviews with:
Jeffrey Kahn, Andreas C. Dracopolous Director of the Johns Hopkins Berman Institute of Bioethics
Monica Gerrek, Co-director of the Center for Biomedical Ethics at MetroHealth System (where Andrea was treated)
You can learn more about Andrea’s case here.
A similar case to Andrea’s happened in the 1970s. A man named Dax Cowart repeatedly asked doctors to let him die after suffering severe burns. But the doctors continued to treat him against his wishes. Here’s an interview with Mr. Cowart ten years after his accident, where he talks about his experience with the Washington Post. Dr. Gerrek wrote a paper comparing the two cases, and showing how medical decision making for severe burn patients has evolved over the past 50 years.
For further reading about medical decision making and patient autonomy, 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.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
You know, it was nine years ago when somebody laid
this all out for me and said, this is what's
going to happen. The pain, the trauma, the hell you're
going to put your family through. Oh and by the way,
you know, you're going to look like this and people
will scare at you and people will be like, what
the hell is going on with that person? I would
(00:25):
have said, oh don't no, no, no, don't let me wake
up to this. Oh no, no, no, no, there's no way.
Speaker 2 (00:32):
Almost a decade ago, Andrea Rubin was in a horrible accident.
Her doctors thought they could probably save her life, but
for two months, Andrea wasn't able to tell them if
that's what she wanted. She was in a coma and
then heavily sedated for several weeks. So other people stepped
in to make life changing decisions for her, and it
(00:56):
got messy.
Speaker 1 (00:58):
Everybody's interests wore on my behalf, but they were completely different.
Speaker 2 (01:03):
What happened to Andrea was one of those rare freak accidents.
Her car caught fire while she was trapped inside. A
crew of firefighters rescued her, but by then the majority
of her body was covered with pretty severe burns, the
kind that go deeper than the skin and damage your
muscles and bones. Paramedics airlifted her to a nearby hospital
(01:26):
in Cleveland, Ohio, where she lived. The doctors weren't clear
at first if they'd be able to save her her
burns were that bad. But one thing was immediately clear.
Her face was so swollen that it was blocking her airway.
To give Andrea even a chance of surviving, doctors wanted
to put her on a ventilator, a machine that helps
(01:47):
you breathe. The ventilator would give the forty nine year
old Andrea a shot at staying alive, but when she
woke up, her life would look pretty different.
Speaker 3 (01:59):
She suffered burns over a significant portion of her face,
and so she was going to lose her nose and
her ears.
Speaker 2 (02:07):
This is Monica Garrick. She's a co director of the
Center for Biomedical Ethics and Metro Health System, the hospital
where Andrea was treated.
Speaker 3 (02:16):
She had significant disfiguration of her lips in her eyelids.
Her vision was going to be questionable. She was going
to be living without at least one of her arms
from the elbow down.
Speaker 2 (02:28):
Even though the ventilator will keep her breathing. Andrea would
need many surgeries to have a second chance at life
outside of the hospital room. Because burns are so painful,
and because she was being operated on so frequently, doctors
put Andrea into a medically induced coma so she couldn't consent,
not to the ventilator or the surgeries. So the hospital
(02:53):
called her seventy nine year old father who lived nearby.
He arrived at her bedside and he told doctors to
go ahead with the ventilator and the surgeries to try
to save his daughter's life. So doctors put Andrea on
the ventilator, and that's when things got complicated.
Speaker 3 (03:11):
She had these friends who were adamant she would not
want treatment to be continued.
Speaker 2 (03:16):
These friends showed up at the hospital burn unit too,
and just down the hall from where Andrea lay unconscious.
The friends argued with the medical team.
Speaker 3 (03:25):
They were out of I mean they were, you know,
just that this would not being burned and with the
kind of scarring she was going to face was not
going to be okay with her.
Speaker 2 (03:37):
Andrea would not want to live without an arm, they said.
She wouldn't want to wake up without a nose or ears,
and no longer recognize her face. Her father may want
her to live, but if Andrea could speak, she would say,
let me die. This made doctors pause. Even if they
could save her, the surgeries would affect her quality of life,
(04:00):
and here were her close friends saying she wouldn't want
to live that life. This was no longer just a
tricky medical decision. It was an ethical problem. So the
doctors asked Monica and her team for help.
Speaker 3 (04:14):
That team was like, look at these friends are so adamant.
They're so adamant. What do we do. They were very
convincing that she would not want to live this way.
In fact, one of them grabbed our ethics fellow shook
her and begged her to get the team to stop
treating Andrea and stop torturing her. Legally, we know what
(04:37):
we're supposed to do, but ethically it gets more complicated.
Speaker 2 (04:40):
While Andrew's case is severe, her situation is actually more
common in hospitals than you might expect. At some point,
you or someone you love will face a life changing
medical decision. It might not be clear what is the
right decision, And if you can't consent because you're unconscious
or sedated, how should doctors and loved ones decide for you.
(05:04):
I'm your host, Lauren Aurora Hutchinson. I'm the director of
the Idea's Lab at the Johns Hopkins Berman Institute of Bioethics.
I've spent years working on stories about the ways in
which medicine and science show up in people's everyday lives.
In this series, I'm going behind the scenes to discover
how some of the most significant medical innovations have impacted
(05:27):
people's lives and continued to whether it's saving lives or
creating babies, New technologies are often accompanied by new ethical questions.
Just because we can do something, does it mean we should?
And who gets to make those kinds of decisions? When
does it seem like playing God? In each episode, you'll
(05:48):
hear directly from patients, leading bioethicists, scientists, and physicians as
they grapple with these kinds of questions. On today's show,
The Ventilator, it saves lives, but it also forces us
to ask who should make life and death decisions for
someone who can't tell us what they want. From Pushkin
(06:09):
Industries and the Johns Hopkins Berman Institute of Bioethics, this
is playing God, So who should make decisions on behalf
of a patient who is heavily sedated or unconscious, and
how do they make the right call. We'll return to
Andrew's story and how decisions were made in her case
(06:31):
a little later, but first I wanted to understand how
experts even begin to address the ethical questions in cases
like this. To find out, I asked Jeffrey Kahan. He's
the director of the Johns Hopkins Berman Institute of Bioethics.
Jeff is extremely well regarded in his field, and I'm
not just saying that because he's my boss. So, Jeff,
(06:55):
from a bioethics perspective, where do we start answering these
types of questions?
Speaker 4 (07:00):
Well, first, I want to say thanks Lauren for taking
the time to talk with me about these important questions,
and not just because we work together. So first, I
think we have to answer a question, which is what's
the end goal here? And the end goal really should
be preserving the autonomy of the individual patient, that is,
the control that they have over themselves and their bodies.
Speaker 2 (07:24):
So in the case here with Andrea, it's about making
sure that the decision that gets made is actually the
one that Andrea would want exactly right.
Speaker 4 (07:33):
So it seems really obvious to us now in twenty
twenty three talking to each other that we would ask
the person first and foremost. But that wasn't always the
way it was. The system used to be much more paternalistic.
That is, the doctor knew best and patients just went
along with whatever the doctor recommended. And so it was
(07:57):
a sea change, really a big difference in the way
the medical profession practices, and what more importantly, maybe patients
expected that their decisions mattered, actually mattered more than the
doctor's recommendation.
Speaker 2 (08:12):
So when did this change happen and what was it
that made the change happen? When it did, why did
doctors start considering patients' wishes?
Speaker 4 (08:19):
It really began in the nineteen sixties. American society was
going through some pretty dramatic changes in the nineteen sixties
into the early nineteen seventies. We had the Vietnam War raging,
We had Watergate and the scandal that ensued. We had
civil rights finally starting to take hold in a lot
of political turmoil around that, and along with identification and
(08:44):
finally implementation I guess of civil rights came a recognition
that patients also had rights. Rights to decide for themselves
and to make decisions about what should happen to their body.
And along with that came some technologies which called it
to question and how we would actually be able to
allow patients to take control of decisions about their bodies.
Speaker 2 (09:05):
So, can you tell us about what kind of technologies
it was and what ethical questions it came about.
Speaker 4 (09:12):
Well, one example of a technology that came along around
the same time and challenge some of these ideas around
patient autonomy was the ventilator. So a machine that allowed
doctors to save the lives of people who are critically
injured to before that technology was invented would have died
like Andrea. The challenge is, if somebody is connected to
(09:32):
a ventilator, they can't most of the time respond to questions,
certainly not by speaking verbally, and most of the time
they're unconscious, making it all but impossible to understand what
their wishes might be when it comes to whether they
should be kept alive when the quality of their life
after they may or may not recover is so uncertain.
(09:54):
And so a technology that allowed people to be kept
alive in a way that just wasn't possible before undermined
or made very difficult the idea of also respecting their autonomy.
Speaker 2 (10:07):
So I guess doctors were again playing God in the sense.
Speaker 4 (10:11):
And they were in a position to take God exactly.
And the ethics question is, wow, should they be the
ones who get to decide or how best to figure
out what would be in the patient's interest, what the
patient's desires would be? Who gets to decide?
Speaker 2 (10:30):
Okay, so how do we get from that to now?
And how should these decisions get made?
Speaker 4 (10:38):
The idea of trying to make sure that people who
could not answer the question about what they would want
for themselves led to something called an advanced directive, so
a document that articulates what people would or would not
like if they found themselves in a situation like being
maintained on a ventilator, usually by checking back, but also
(11:00):
really importantly to identify somebody who can speak on their behalf.
Speaker 2 (11:05):
And then what happens if someone hasn't left anything behind
like an advanced directive, so like what happened with Andrea.
Speaker 4 (11:12):
Unfortunately that's a very common occurrence. Then the question is
and should be who can speak with knowledge about their wishes?
What would they want?
Speaker 5 (11:24):
Not?
Speaker 4 (11:24):
What do we think is best for them, but rather
what would they want? And if we don't know the
answer to that question, then we have to ask a
different question, which is what do we think would be
best for them? If we don't know what they would want.
The problem occurs when members of the family don't seem
to know what the patient would want, or other people
(11:45):
show up and say, I know this person better than
the members of their family, and I can speak with
knowledge about what they would want in a way that's better,
more informed than the people who are related to them.
Speaker 2 (11:59):
So in Andrea's case, there was a lot of disagreement
as we had. So what happens in those cases?
Speaker 4 (12:06):
Then there is a process. It's required as a matter
of accreditation for hospitals that an ethics committee exists at
the hospital and that there be a process for something
called an ethics consultation and ethics consult So people like
Monica in our story, who was a clinical ethics expert,
social workers, psychologists, sometimes psychiatrists, members of the legal department
(12:31):
in the hospital. All those people are sitting around at
table in a conference room, being presented with a case
and then trying to help advise how to proceed.
Speaker 2 (12:41):
So what would be used as evidence in those kind
of consultations. Say, if Andrew's friends had had something written
down that Andrea had said, would that help?
Speaker 4 (12:50):
I think it would help inform the process. You have
to hope in a case like andreas, if there was
concrete evidence that the friends could bring that it would
be used to inform the conversation, hopefully inform the father's
decision making. So it wouldn't change who gets to decide,
but hopefully it would change the information that the person
(13:12):
who gets to decide would use to make the decision
on behalf of the patient.
Speaker 2 (13:17):
Okay, thanks Jeff. After the break, we'll find out how
well Andrea thinks this system worked for her. How did
the ethics team, her loved ones, and doctors decide what
to do, and did she feel like they made the
right call.
Speaker 1 (13:34):
So I think it's a very difficult question to answer.
Speaker 2 (13:40):
Wow, let's go back to the hospital burn unit. Andrea
Rubin is covered in life threatening burns and is unconscious.
Doctors say the ventilator and surgery are her only shot
at staying. Andrea's dad is ready to move forward, but
(14:04):
Andrea's friends are insistent that Andrea wouldn't want to be
kept alive under these circumstances.
Speaker 3 (14:12):
They were so adamant. In fact, I had a nurse
tell me years later in tears, years later thinking back
about the stress that they were feeling, because the friends
were so adamant that they were sending Andrea into a
(14:32):
life she would not want to live again.
Speaker 2 (14:34):
Monica Garrick, the hospital bioethicist. According to Monica, Andrea's friends
couldn't override the dad's authority to make the call. But
if the friends had any evidence of Andrea's wishes, if
there was a text from Andrea, if they could remember
the details of a conversation, Monica could take that information
to Andrea's dad.
Speaker 3 (14:55):
You know, we might have talked to her father and said, look,
this is what we're being told, and this is an
consistent with the fact you're willing to consent. Can you
talk to us about why you're consenting on her behalf?
Speaker 2 (15:06):
But her friends didn't have any concrete evidence of Andrew's wishes,
so Andrew was kept alive. She had nineteen surgeries while
she was sedated, and around thirty nine more over the
next five years, Andrew spent seven weeks in an induced
coma and another month and a half in and out
of consciousness, and slowly she began piecing together the story
(15:30):
of what happened. She learned about what her friends did.
Speaker 1 (15:34):
They were fighting with my dad saying, you know, obviously
you don't know your daughter. They really felt my father
didn't understand that for a girl who forty nine years old,
yeah she can walk, but she does does she want
to walk through this life looking like this?
Speaker 2 (15:55):
She also learned what surgeons had done to save her.
Speaker 1 (15:58):
They made a makeshift eyelid, which just looks basically looks
like I've been punched in the face right, so I
have no vision in that eye. I lost three quarters
of my nose. I had burns on my face, so
I don't look anything like I used to do. A
lot of scar tissues, so I can't really smile.
Speaker 2 (16:20):
The most she can manage now is a slight upcurl
of her lips. Also, the burns on her scalp were
so bad she can no longer grow her hair. Like
a lot of people, hair was pretty important to Andrea
even before the accident. She felt pretty insecure about it.
Speaker 1 (16:39):
I could never get my hair like long enough the
way I wanted it, and I'm like once I discovered
hair extensions, it was game over. I'm like, oh my god,
I have long, full hair. Finally, I wasn't really like
thrown on all the makeup and you know, having to
look perfect. I took very good care of myself. I
always worked out. I cared about what I looked like.
(16:59):
But I wasn't all about it, you know, except when
it came to the hair extensions.
Speaker 4 (17:03):
I was all about it.
Speaker 2 (17:05):
These days, Andrea wears a medical wig. It's long, straight
and honeyblonde, just like her hair was before the accident.
Of course, it's not exactly the same, and that's part
of what her friends were worried about all those years ago,
why they thought Andrea might not want to stay alive.
Speaker 1 (17:23):
What my friends were suggesting was extreme, but then again,
what happened to me was very extreme.
Speaker 2 (17:29):
The three friends who spoke up for her at the hospital,
all women, are still her closest friends today, and she
says there are no hard feelings. They've talked about why
they were so adamant that she shouldn't be kept alive.
Speaker 1 (17:42):
They're like, we just didn't. We didn't want to put
you through this. We didn't think you'd be happy. We
were speaking for you, as we thought you would have
spoken for yourself.
Speaker 2 (17:53):
They aren't afraid to talk about what happened. They can
even laugh about it.
Speaker 5 (17:57):
You know.
Speaker 1 (17:58):
It's like I always grant, Oh, I just would have
you know, I would have killed you too.
Speaker 2 (18:06):
She also understands why her dad made the call to
keep her alive.
Speaker 1 (18:10):
I am pretty sure it was a difficult call for him.
But I think at the end of the day, when
doctors said, hey, we probably can save her, I guess
what's a parent going to do?
Speaker 2 (18:26):
But were her friends right when they assume the surgeries
would compromise her quality of life so much that she
wouldn't have wanted to survive.
Speaker 1 (18:34):
You know. I go back and forth with this. At
the time, I think they were right. Of course, Now
in hindsight, I'm so happy I'm alive. A lot has
changed on the outside, but my life really is still
pretty remarkable.
Speaker 2 (18:51):
Andrea is happy she's alive, which is pretty much the
best case scenario for someone who didn't have their wishes
spelled out in advance. And again we're not picking on Andrea.
Most people don't have any of this stuff worked out.
Speaker 1 (19:05):
I tell everybody, get your stuff together, because I didn't
have anything together. Nothing and everybody had a long, hard
journey because of it.
Speaker 2 (19:15):
And if you're thinking, great, I'll just write an advanced directive.
Problem solved. It's still hard to predict how you feel
in every situation. You might not understand all the options
available to you, especially if you're dealing with a life
saving medical technology like the ventilator. The ventilator was an issue.
(19:37):
In another case, Monica got involved in.
Speaker 3 (19:40):
Our service, got consulted by a surgeon and said, I
don't have an issue now, but I want you involved
now because this is a little complicated.
Speaker 2 (19:52):
The surgeon told her he had a patient who might
need to be on a ventilator for just a day
or two before he was well enough to breathe on
his own. The problem. The patient had been very explicit
about his desire to never be put on a ventilator.
Speaker 3 (20:06):
He had written it on the backs of manila envelopes,
in notebooks and like sort of scrap pieces of paper.
So I don't know what had happened in his life,
but he was very sure he did not ever want
to be on a breathing machine.
Speaker 2 (20:23):
It was up to his daughter to decide what to do,
and she knew his dance, but it wasn't clear to
her if he'd understood that being on a ventilator can
be temporary. Did he really mean never or just not forever.
The daughter reached out to the hospital's bioethics consult team.
She wanted help from experts like Monica.
Speaker 3 (20:45):
And so, what do I do if you're telling me
it's temporary and that it'll save his life and that
without it he could die? But he said never? What
do I do?
Speaker 2 (20:57):
Remember Jeffrey Kahn, our bioethicist from earlier, as he pointed out,
we can't always predict what a patient would decide for themselves.
In those cases, we have to decide what would be
best for them, what would be in the patient's best interest.
Monica and the patient's daughter got the input of the
medical team and decided that it would be best for
(21:18):
him to be put temporarily on a ventilator. Luckily, the
daughter didn't have to act on that decision. Her dad
didn't need to be put on a ventilator.
Speaker 3 (21:27):
He got better and he came to a few days later,
and when he woke up, the first thing out of
her mouth to him was, Dad, you know, this is
what happened, and they almost had to do this to you.
But you've said repeatedly and you wrote it down that
you never wanted to be on a ventilator. What should
I do in the future if this ever happens again?
And he said, well, why all means say yes.
Speaker 2 (21:50):
The idea of acting in the patient's best interests accounts
for some of the gray areas in advanced directives, because
even if you have an advanced directive, it's hard to
know if you feel the same way when you're in
a life or death situation.
Speaker 3 (22:05):
People when they get close to death, if they've said
I don't want any interventions, sometimes say well, now give
them to me. I've changed my mind. And some people
who get close to death who have said, you know,
give me every intervention get close and say no, no, no,
I don't want them. Now I'm ready to go. So
all this decision stuff at the bedside gets really it's
(22:29):
extremely complicated. You have the patient who sometimes is unreliable,
not because they're not good people or not because they
haven't thought about things, but because we change our minds
all the time about everything.
Speaker 2 (22:40):
Andrea understands this as well as anyone I know.
Speaker 1 (22:44):
If it were nine years ago and somebody said, Okay,
here's what's going to happen. You know you're going to
be completely disfigured, blah blah blah. Would could you do it?
My answer to be, heck no, don't even think about it.
Save your time and enerchanges. Let me go.
Speaker 2 (23:00):
Back then, physical appearance was pretty important to Andrea. It
played a big role in her quality of life. Today,
Andrea looks completely different, but her quality of life is
better than she could have imagined. She's glad to be alive.
Monica is trying to help Andrea make a plan in
(23:21):
case she ever ends up in another life or death situation.
She's encouraging Andrea to prepare an advance directive.
Speaker 3 (23:31):
Had a conversation with her about what happens if she suffers,
you know, really devastating seespine injury and ends up with quadriplegia.
Then what And then she's told me that she wouldn't
want to continue to live like that, and I'm like,
but you said you wouldn't want to continue to live
like this and she said, right, but that's really my limit.
And I said, well, how do you know that that's
(23:52):
really your limit? When you thought this was your limit,
and then this, and she said, well, you're right, Monica,
I don't know. And I I said, so, then what
are we supposed to do? And you know, she basically
admits she doesn't really know what we're supposed to do.
Right if something happens to her again.
Speaker 1 (24:08):
I've gone through so much. I just have this fighting spirit.
But oh heck no, no, no no, I don't have any
more fight left in me. But you know, when it
all is said and done, I want to live.
Speaker 3 (24:19):
These aren't the thoughts of a flaky person, right. Andrewa
is extremely articulate. She's very smart, she's very thoughtful. I
think she's just typical of normal human beings.
Speaker 2 (24:35):
Normal human beings constantly change their minds, our values, and
ideas about things like appearance and quality of life. They
shift over time. How we feel about things depends so
much on the context. But the more you think through
your wishes and share them with others when things are okay,
the easier is for everyone to respect your wishes. When
(24:57):
things are dire, I.
Speaker 1 (24:59):
Get to live, to do, I get to try to
make a difference. I have some happiness, less pain, no
more hospital. It's like, yeah, the last thing I want
to do is sit here and start talking about the
worst thing in the world. But it is something I
need to start really focusing on again.
Speaker 2 (25:17):
Of course, we can't plan ahead for every scenario. In
some cases, a loved one may have to step in
and make a call, and when they do, there's a
ton of pressure and stress to get things right. For
some people that's the most important thing, But for Monica,
what's more important than being right is how you get
(25:38):
to your decision.
Speaker 3 (25:39):
Personally, I've told my loved ones, look, you know, do
what you think is best in that moment, and that
is okay with me. Like, just know that I support
whatever decision you made. And I had a nurse tell me.
She was a retired nurse, and she said, Monica, I
always told loved ones, family members, if you make the
decision from love, you cannot make a bad decision. You know,
(26:01):
actual love, not selfishness or but real love for the person.
You can't make a bad decision. And I think that
that's right.
Speaker 6 (26:11):
Coming out this season on Playing God, I just remember
laying there and watching the lights above me as we're
walking down the hallway, and the first thing I said was,
do I have a uterus, and the nurse who was
pushing me look down and they smiled and they're like,
you have a uterus.
Speaker 1 (26:29):
So there were questions about who was actually the narrator
of the life at that point. Was it the technology
or was it the person? Was it some kind of combination.
Speaker 5 (26:38):
I am completely dependent upon electricity as medicine, and there
will never be a point in my life where I
can quote go off the grid because I can never
be without electricity for my own survival.
Speaker 4 (26:56):
You sort of have to ask yourself, what would I
do as a parent? Wouldn't I do anything I possibly could?
How can you not try everything when you're trying to
save the life of your child?
Speaker 2 (27:05):
Many thanks to our guests Andrea Rubin and Monica Gerrick.
Playing God is a co production of Pushkin Industries and
the Johns Hopkins Berman Institute of Bioethics. Emily Bourne is
our lead producer. This episode was also produced by Sophie
Crane and Lucy Sullivan. Our editors are Karen Schakerjee and
(27:27):
Kate Parkinson Morgan. The music and mixing by Echo Mountain Engineering,
support from Sarah Bruguer and Amanda Kaiwan. Show art by
Sean Krney fact checking by David jar and Arthur Gompertz.
Our executive producer is Justine Lang at the Johns Hopkins
(27:48):
Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan
and Anna Mastriani, working with a Media hood funding provided
by the Greenwall Foundation Special thanks to Tammy Coffee. I'm
Lauren and Rora Hutchinson. Come back next week for more
Playing God. If you're interested in learning more about these
(28:16):
stories and discussions, visit the Berman Institute's guide to the
podcast at Bioethics dot JHU dot edu, slash Playing God,
or find us on social media at Burman Institute
You know, it was nine years ago when somebody laid
this all out for me and said, this is what's
going to happen. The pain, the trauma, the hell you're
going to put your family through. Oh and by the way,
you know, you're going to look like this and people
will scare at you and people will be like, what
the hell is going on with that person? I would
(00:25):
have said, oh don't no, no, no, don't let me wake
up to this. Oh no, no, no, no, there's no way.
Speaker 2 (00:32):
Almost a decade ago, Andrea Rubin was in a horrible accident.
Her doctors thought they could probably save her life, but
for two months, Andrea wasn't able to tell them if
that's what she wanted. She was in a coma and
then heavily sedated for several weeks. So other people stepped
in to make life changing decisions for her, and it
(00:56):
got messy.
Speaker 1 (00:58):
Everybody's interests wore on my behalf, but they were completely different.
Speaker 2 (01:03):
What happened to Andrea was one of those rare freak accidents.
Her car caught fire while she was trapped inside. A
crew of firefighters rescued her, but by then the majority
of her body was covered with pretty severe burns, the
kind that go deeper than the skin and damage your
muscles and bones. Paramedics airlifted her to a nearby hospital
(01:26):
in Cleveland, Ohio, where she lived. The doctors weren't clear
at first if they'd be able to save her her
burns were that bad. But one thing was immediately clear.
Her face was so swollen that it was blocking her airway.
To give Andrea even a chance of surviving, doctors wanted
to put her on a ventilator, a machine that helps
(01:47):
you breathe. The ventilator would give the forty nine year
old Andrea a shot at staying alive, but when she
woke up, her life would look pretty different.
Speaker 3 (01:59):
She suffered burns over a significant portion of her face,
and so she was going to lose her nose and
her ears.
Speaker 2 (02:07):
This is Monica Garrick. She's a co director of the
Center for Biomedical Ethics and Metro Health System, the hospital
where Andrea was treated.
Speaker 3 (02:16):
She had significant disfiguration of her lips in her eyelids.
Her vision was going to be questionable. She was going
to be living without at least one of her arms
from the elbow down.
Speaker 2 (02:28):
Even though the ventilator will keep her breathing. Andrea would
need many surgeries to have a second chance at life
outside of the hospital room. Because burns are so painful,
and because she was being operated on so frequently, doctors
put Andrea into a medically induced coma so she couldn't consent,
not to the ventilator or the surgeries. So the hospital
(02:53):
called her seventy nine year old father who lived nearby.
He arrived at her bedside and he told doctors to
go ahead with the ventilator and the surgeries to try
to save his daughter's life. So doctors put Andrea on
the ventilator, and that's when things got complicated.
Speaker 3 (03:11):
She had these friends who were adamant she would not
want treatment to be continued.
Speaker 2 (03:16):
These friends showed up at the hospital burn unit too,
and just down the hall from where Andrea lay unconscious.
The friends argued with the medical team.
Speaker 3 (03:25):
They were out of I mean they were, you know,
just that this would not being burned and with the
kind of scarring she was going to face was not
going to be okay with her.
Speaker 2 (03:37):
Andrea would not want to live without an arm, they said.
She wouldn't want to wake up without a nose or ears,
and no longer recognize her face. Her father may want
her to live, but if Andrea could speak, she would say,
let me die. This made doctors pause. Even if they
could save her, the surgeries would affect her quality of life,
(04:00):
and here were her close friends saying she wouldn't want
to live that life. This was no longer just a
tricky medical decision. It was an ethical problem. So the
doctors asked Monica and her team for help.
Speaker 3 (04:14):
That team was like, look at these friends are so adamant.
They're so adamant. What do we do. They were very
convincing that she would not want to live this way.
In fact, one of them grabbed our ethics fellow shook
her and begged her to get the team to stop
treating Andrea and stop torturing her. Legally, we know what
(04:37):
we're supposed to do, but ethically it gets more complicated.
Speaker 2 (04:40):
While Andrew's case is severe, her situation is actually more
common in hospitals than you might expect. At some point,
you or someone you love will face a life changing
medical decision. It might not be clear what is the
right decision, And if you can't consent because you're unconscious
or sedated, how should doctors and loved ones decide for you.
(05:04):
I'm your host, Lauren Aurora Hutchinson. I'm the director of
the Idea's Lab at the Johns Hopkins Berman Institute of Bioethics.
I've spent years working on stories about the ways in
which medicine and science show up in people's everyday lives.
In this series, I'm going behind the scenes to discover
how some of the most significant medical innovations have impacted
(05:27):
people's lives and continued to whether it's saving lives or
creating babies, New technologies are often accompanied by new ethical questions.
Just because we can do something, does it mean we should?
And who gets to make those kinds of decisions? When
does it seem like playing God? In each episode, you'll
(05:48):
hear directly from patients, leading bioethicists, scientists, and physicians as
they grapple with these kinds of questions. On today's show,
The Ventilator, it saves lives, but it also forces us
to ask who should make life and death decisions for
someone who can't tell us what they want. From Pushkin
(06:09):
Industries and the Johns Hopkins Berman Institute of Bioethics, this
is playing God, So who should make decisions on behalf
of a patient who is heavily sedated or unconscious, and
how do they make the right call. We'll return to
Andrew's story and how decisions were made in her case
(06:31):
a little later, but first I wanted to understand how
experts even begin to address the ethical questions in cases
like this. To find out, I asked Jeffrey Kahan. He's
the director of the Johns Hopkins Berman Institute of Bioethics.
Jeff is extremely well regarded in his field, and I'm
not just saying that because he's my boss. So, Jeff,
(06:55):
from a bioethics perspective, where do we start answering these
types of questions?
Speaker 4 (07:00):
Well, first, I want to say thanks Lauren for taking
the time to talk with me about these important questions,
and not just because we work together. So first, I
think we have to answer a question, which is what's
the end goal here? And the end goal really should
be preserving the autonomy of the individual patient, that is,
the control that they have over themselves and their bodies.
Speaker 2 (07:24):
So in the case here with Andrea, it's about making
sure that the decision that gets made is actually the
one that Andrea would want exactly right.
Speaker 4 (07:33):
So it seems really obvious to us now in twenty
twenty three talking to each other that we would ask
the person first and foremost. But that wasn't always the
way it was. The system used to be much more paternalistic.
That is, the doctor knew best and patients just went
along with whatever the doctor recommended. And so it was
(07:57):
a sea change, really a big difference in the way
the medical profession practices, and what more importantly, maybe patients
expected that their decisions mattered, actually mattered more than the
doctor's recommendation.
Speaker 2 (08:12):
So when did this change happen and what was it
that made the change happen? When it did, why did
doctors start considering patients' wishes?
Speaker 4 (08:19):
It really began in the nineteen sixties. American society was
going through some pretty dramatic changes in the nineteen sixties
into the early nineteen seventies. We had the Vietnam War raging,
We had Watergate and the scandal that ensued. We had
civil rights finally starting to take hold in a lot
of political turmoil around that, and along with identification and
(08:44):
finally implementation I guess of civil rights came a recognition
that patients also had rights. Rights to decide for themselves
and to make decisions about what should happen to their body.
And along with that came some technologies which called it
to question and how we would actually be able to
allow patients to take control of decisions about their bodies.
Speaker 2 (09:05):
So, can you tell us about what kind of technologies
it was and what ethical questions it came about.
Speaker 4 (09:12):
Well, one example of a technology that came along around
the same time and challenge some of these ideas around
patient autonomy was the ventilator. So a machine that allowed
doctors to save the lives of people who are critically
injured to before that technology was invented would have died
like Andrea. The challenge is, if somebody is connected to
(09:32):
a ventilator, they can't most of the time respond to questions,
certainly not by speaking verbally, and most of the time
they're unconscious, making it all but impossible to understand what
their wishes might be when it comes to whether they
should be kept alive when the quality of their life
after they may or may not recover is so uncertain.
(09:54):
And so a technology that allowed people to be kept
alive in a way that just wasn't possible before undermined
or made very difficult the idea of also respecting their autonomy.
Speaker 2 (10:07):
So I guess doctors were again playing God in the sense.
Speaker 4 (10:11):
And they were in a position to take God exactly.
And the ethics question is, wow, should they be the
ones who get to decide or how best to figure
out what would be in the patient's interest, what the
patient's desires would be? Who gets to decide?
Speaker 2 (10:30):
Okay, so how do we get from that to now?
And how should these decisions get made?
Speaker 4 (10:38):
The idea of trying to make sure that people who
could not answer the question about what they would want
for themselves led to something called an advanced directive, so
a document that articulates what people would or would not
like if they found themselves in a situation like being
maintained on a ventilator, usually by checking back, but also
(11:00):
really importantly to identify somebody who can speak on their behalf.
Speaker 2 (11:05):
And then what happens if someone hasn't left anything behind
like an advanced directive, so like what happened with Andrea.
Speaker 4 (11:12):
Unfortunately that's a very common occurrence. Then the question is
and should be who can speak with knowledge about their wishes?
What would they want?
Speaker 5 (11:24):
Not?
Speaker 4 (11:24):
What do we think is best for them, but rather
what would they want? And if we don't know the
answer to that question, then we have to ask a
different question, which is what do we think would be
best for them? If we don't know what they would want.
The problem occurs when members of the family don't seem
to know what the patient would want, or other people
(11:45):
show up and say, I know this person better than
the members of their family, and I can speak with
knowledge about what they would want in a way that's better,
more informed than the people who are related to them.
Speaker 2 (11:59):
So in Andrea's case, there was a lot of disagreement
as we had. So what happens in those cases?
Speaker 4 (12:06):
Then there is a process. It's required as a matter
of accreditation for hospitals that an ethics committee exists at
the hospital and that there be a process for something
called an ethics consultation and ethics consult So people like
Monica in our story, who was a clinical ethics expert,
social workers, psychologists, sometimes psychiatrists, members of the legal department
(12:31):
in the hospital. All those people are sitting around at
table in a conference room, being presented with a case
and then trying to help advise how to proceed.
Speaker 2 (12:41):
So what would be used as evidence in those kind
of consultations. Say, if Andrew's friends had had something written
down that Andrea had said, would that help?
Speaker 4 (12:50):
I think it would help inform the process. You have
to hope in a case like andreas, if there was
concrete evidence that the friends could bring that it would
be used to inform the conversation, hopefully inform the father's
decision making. So it wouldn't change who gets to decide,
but hopefully it would change the information that the person
(13:12):
who gets to decide would use to make the decision
on behalf of the patient.
Speaker 2 (13:17):
Okay, thanks Jeff. After the break, we'll find out how
well Andrea thinks this system worked for her. How did
the ethics team, her loved ones, and doctors decide what
to do, and did she feel like they made the
right call.
Speaker 1 (13:34):
So I think it's a very difficult question to answer.
Speaker 2 (13:40):
Wow, let's go back to the hospital burn unit. Andrea
Rubin is covered in life threatening burns and is unconscious.
Doctors say the ventilator and surgery are her only shot
at staying. Andrea's dad is ready to move forward, but
(14:04):
Andrea's friends are insistent that Andrea wouldn't want to be
kept alive under these circumstances.
Speaker 3 (14:12):
They were so adamant. In fact, I had a nurse
tell me years later in tears, years later thinking back
about the stress that they were feeling, because the friends
were so adamant that they were sending Andrea into a
(14:32):
life she would not want to live again.
Speaker 2 (14:34):
Monica Garrick, the hospital bioethicist. According to Monica, Andrea's friends
couldn't override the dad's authority to make the call. But
if the friends had any evidence of Andrea's wishes, if
there was a text from Andrea, if they could remember
the details of a conversation, Monica could take that information
to Andrea's dad.
Speaker 3 (14:55):
You know, we might have talked to her father and said, look,
this is what we're being told, and this is an
consistent with the fact you're willing to consent. Can you
talk to us about why you're consenting on her behalf?
Speaker 2 (15:06):
But her friends didn't have any concrete evidence of Andrew's wishes,
so Andrew was kept alive. She had nineteen surgeries while
she was sedated, and around thirty nine more over the
next five years, Andrew spent seven weeks in an induced
coma and another month and a half in and out
of consciousness, and slowly she began piecing together the story
(15:30):
of what happened. She learned about what her friends did.
Speaker 1 (15:34):
They were fighting with my dad saying, you know, obviously
you don't know your daughter. They really felt my father
didn't understand that for a girl who forty nine years old,
yeah she can walk, but she does does she want
to walk through this life looking like this?
Speaker 2 (15:55):
She also learned what surgeons had done to save her.
Speaker 1 (15:58):
They made a makeshift eyelid, which just looks basically looks
like I've been punched in the face right, so I
have no vision in that eye. I lost three quarters
of my nose. I had burns on my face, so
I don't look anything like I used to do. A
lot of scar tissues, so I can't really smile.
Speaker 2 (16:20):
The most she can manage now is a slight upcurl
of her lips. Also, the burns on her scalp were
so bad she can no longer grow her hair. Like
a lot of people, hair was pretty important to Andrea
even before the accident. She felt pretty insecure about it.
Speaker 1 (16:39):
I could never get my hair like long enough the
way I wanted it, and I'm like once I discovered
hair extensions, it was game over. I'm like, oh my god,
I have long, full hair. Finally, I wasn't really like
thrown on all the makeup and you know, having to
look perfect. I took very good care of myself. I
always worked out. I cared about what I looked like.
(16:59):
But I wasn't all about it, you know, except when
it came to the hair extensions.
Speaker 4 (17:03):
I was all about it.
Speaker 2 (17:05):
These days, Andrea wears a medical wig. It's long, straight
and honeyblonde, just like her hair was before the accident.
Of course, it's not exactly the same, and that's part
of what her friends were worried about all those years ago,
why they thought Andrea might not want to stay alive.
Speaker 1 (17:23):
What my friends were suggesting was extreme, but then again,
what happened to me was very extreme.
Speaker 2 (17:29):
The three friends who spoke up for her at the hospital,
all women, are still her closest friends today, and she
says there are no hard feelings. They've talked about why
they were so adamant that she shouldn't be kept alive.
Speaker 1 (17:42):
They're like, we just didn't. We didn't want to put
you through this. We didn't think you'd be happy. We
were speaking for you, as we thought you would have
spoken for yourself.
Speaker 2 (17:53):
They aren't afraid to talk about what happened. They can
even laugh about it.
Speaker 5 (17:57):
You know.
Speaker 1 (17:58):
It's like I always grant, Oh, I just would have
you know, I would have killed you too.
Speaker 2 (18:06):
She also understands why her dad made the call to
keep her alive.
Speaker 1 (18:10):
I am pretty sure it was a difficult call for him.
But I think at the end of the day, when
doctors said, hey, we probably can save her, I guess
what's a parent going to do?
Speaker 2 (18:26):
But were her friends right when they assume the surgeries
would compromise her quality of life so much that she
wouldn't have wanted to survive.
Speaker 1 (18:34):
You know. I go back and forth with this. At
the time, I think they were right. Of course, Now
in hindsight, I'm so happy I'm alive. A lot has
changed on the outside, but my life really is still
pretty remarkable.
Speaker 2 (18:51):
Andrea is happy she's alive, which is pretty much the
best case scenario for someone who didn't have their wishes
spelled out in advance. And again we're not picking on Andrea.
Most people don't have any of this stuff worked out.
Speaker 1 (19:05):
I tell everybody, get your stuff together, because I didn't
have anything together. Nothing and everybody had a long, hard
journey because of it.
Speaker 2 (19:15):
And if you're thinking, great, I'll just write an advanced directive.
Problem solved. It's still hard to predict how you feel
in every situation. You might not understand all the options
available to you, especially if you're dealing with a life
saving medical technology like the ventilator. The ventilator was an issue.
(19:37):
In another case, Monica got involved in.
Speaker 3 (19:40):
Our service, got consulted by a surgeon and said, I
don't have an issue now, but I want you involved
now because this is a little complicated.
Speaker 2 (19:52):
The surgeon told her he had a patient who might
need to be on a ventilator for just a day
or two before he was well enough to breathe on
his own. The problem. The patient had been very explicit
about his desire to never be put on a ventilator.
Speaker 3 (20:06):
He had written it on the backs of manila envelopes,
in notebooks and like sort of scrap pieces of paper.
So I don't know what had happened in his life,
but he was very sure he did not ever want
to be on a breathing machine.
Speaker 2 (20:23):
It was up to his daughter to decide what to do,
and she knew his dance, but it wasn't clear to
her if he'd understood that being on a ventilator can
be temporary. Did he really mean never or just not forever.
The daughter reached out to the hospital's bioethics consult team.
She wanted help from experts like Monica.
Speaker 3 (20:45):
And so, what do I do if you're telling me
it's temporary and that it'll save his life and that
without it he could die? But he said never? What
do I do?
Speaker 2 (20:57):
Remember Jeffrey Kahn, our bioethicist from earlier, as he pointed out,
we can't always predict what a patient would decide for themselves.
In those cases, we have to decide what would be
best for them, what would be in the patient's best interest.
Monica and the patient's daughter got the input of the
medical team and decided that it would be best for
(21:18):
him to be put temporarily on a ventilator. Luckily, the
daughter didn't have to act on that decision. Her dad
didn't need to be put on a ventilator.
Speaker 3 (21:27):
He got better and he came to a few days later,
and when he woke up, the first thing out of
her mouth to him was, Dad, you know, this is
what happened, and they almost had to do this to you.
But you've said repeatedly and you wrote it down that
you never wanted to be on a ventilator. What should
I do in the future if this ever happens again?
And he said, well, why all means say yes.
Speaker 2 (21:50):
The idea of acting in the patient's best interests accounts
for some of the gray areas in advanced directives, because
even if you have an advanced directive, it's hard to
know if you feel the same way when you're in
a life or death situation.
Speaker 3 (22:05):
People when they get close to death, if they've said
I don't want any interventions, sometimes say well, now give
them to me. I've changed my mind. And some people
who get close to death who have said, you know,
give me every intervention get close and say no, no, no,
I don't want them. Now I'm ready to go. So
all this decision stuff at the bedside gets really it's
(22:29):
extremely complicated. You have the patient who sometimes is unreliable,
not because they're not good people or not because they
haven't thought about things, but because we change our minds
all the time about everything.
Speaker 2 (22:40):
Andrea understands this as well as anyone I know.
Speaker 1 (22:44):
If it were nine years ago and somebody said, Okay,
here's what's going to happen. You know you're going to
be completely disfigured, blah blah blah. Would could you do it?
My answer to be, heck no, don't even think about it.
Save your time and enerchanges. Let me go.
Speaker 2 (23:00):
Back then, physical appearance was pretty important to Andrea. It
played a big role in her quality of life. Today,
Andrea looks completely different, but her quality of life is
better than she could have imagined. She's glad to be alive.
Monica is trying to help Andrea make a plan in
(23:21):
case she ever ends up in another life or death situation.
She's encouraging Andrea to prepare an advance directive.
Speaker 3 (23:31):
Had a conversation with her about what happens if she suffers,
you know, really devastating seespine injury and ends up with quadriplegia.
Then what And then she's told me that she wouldn't
want to continue to live like that, and I'm like,
but you said you wouldn't want to continue to live
like this and she said, right, but that's really my limit.
And I said, well, how do you know that that's
(23:52):
really your limit? When you thought this was your limit,
and then this, and she said, well, you're right, Monica,
I don't know. And I I said, so, then what
are we supposed to do? And you know, she basically
admits she doesn't really know what we're supposed to do.
Right if something happens to her again.
Speaker 1 (24:08):
I've gone through so much. I just have this fighting spirit.
But oh heck no, no, no no, I don't have any
more fight left in me. But you know, when it
all is said and done, I want to live.
Speaker 3 (24:19):
These aren't the thoughts of a flaky person, right. Andrewa
is extremely articulate. She's very smart, she's very thoughtful. I
think she's just typical of normal human beings.
Speaker 2 (24:35):
Normal human beings constantly change their minds, our values, and
ideas about things like appearance and quality of life. They
shift over time. How we feel about things depends so
much on the context. But the more you think through
your wishes and share them with others when things are okay,
the easier is for everyone to respect your wishes. When
(24:57):
things are dire, I.
Speaker 1 (24:59):
Get to live, to do, I get to try to
make a difference. I have some happiness, less pain, no
more hospital. It's like, yeah, the last thing I want
to do is sit here and start talking about the
worst thing in the world. But it is something I
need to start really focusing on again.
Speaker 2 (25:17):
Of course, we can't plan ahead for every scenario. In
some cases, a loved one may have to step in
and make a call, and when they do, there's a
ton of pressure and stress to get things right. For
some people that's the most important thing, But for Monica,
what's more important than being right is how you get
(25:38):
to your decision.
Speaker 3 (25:39):
Personally, I've told my loved ones, look, you know, do
what you think is best in that moment, and that
is okay with me. Like, just know that I support
whatever decision you made. And I had a nurse tell me.
She was a retired nurse, and she said, Monica, I
always told loved ones, family members, if you make the
decision from love, you cannot make a bad decision. You know,
(26:01):
actual love, not selfishness or but real love for the person.
You can't make a bad decision. And I think that
that's right.
Speaker 6 (26:11):
Coming out this season on Playing God, I just remember
laying there and watching the lights above me as we're
walking down the hallway, and the first thing I said was,
do I have a uterus, and the nurse who was
pushing me look down and they smiled and they're like,
you have a uterus.
Speaker 1 (26:29):
So there were questions about who was actually the narrator
of the life at that point. Was it the technology
or was it the person? Was it some kind of combination.
Speaker 5 (26:38):
I am completely dependent upon electricity as medicine, and there
will never be a point in my life where I
can quote go off the grid because I can never
be without electricity for my own survival.
Speaker 4 (26:56):
You sort of have to ask yourself, what would I
do as a parent? Wouldn't I do anything I possibly could?
How can you not try everything when you're trying to
save the life of your child?
Speaker 2 (27:05):
Many thanks to our guests Andrea Rubin and Monica Gerrick.
Playing God is a co production of Pushkin Industries and
the Johns Hopkins Berman Institute of Bioethics. Emily Bourne is
our lead producer. This episode was also produced by Sophie
Crane and Lucy Sullivan. Our editors are Karen Schakerjee and
(27:27):
Kate Parkinson Morgan. The music and mixing by Echo Mountain Engineering,
support from Sarah Bruguer and Amanda Kaiwan. Show art by
Sean Krney fact checking by David jar and Arthur Gompertz.
Our executive producer is Justine Lang at the Johns Hopkins
(27:48):
Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan
and Anna Mastriani, working with a Media hood funding provided
by the Greenwall Foundation Special thanks to Tammy Coffee. I'm
Lauren and Rora Hutchinson. Come back next week for more
Playing God. If you're interested in learning more about these
(28:16):
stories and discussions, visit the Berman Institute's guide to the
podcast at Bioethics dot JHU dot edu, slash Playing God,
or find us on social media at Burman Institute
Popular Podcasts
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations.
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
The Nikki Glaser Podcast
Every week comedian and infamous roaster Nikki Glaser provides a fun, fast-paced, and brutally honest look into current pop-culture and her own personal life.