TRANSCRIÇÃO 🔗
1
00:00:17,940 --> 00:00:20,130
Lauren Arora Hutchinson: I'm
Lauren Arora Hutchinson, and
2
00:00:20,130 --> 00:00:26,835
this is playing god? presents...
Today, a story about uncertainty
3
00:00:26,835 --> 00:00:31,515
in medicine, that dissonant
feeling it creates, and how
4
00:00:31,515 --> 00:00:37,155
sometimes you have to make a
decision, even when you don't
5
00:00:37,155 --> 00:00:38,475
have all the answers.
6
00:00:38,960 --> 00:00:41,150
Loren Ludwig: My mom often says,
or you know, people say, they're
7
00:00:41,150 --> 00:00:43,670
like, "oh, it's a little out of
tune. Nobody minds. It's only
8
00:00:43,670 --> 00:00:47,480
you." It's like, no, no, really,
it doesn't- the whole point is
9
00:00:47,480 --> 00:00:50,990
the beauty. Like, like, no, I'm
not going to play out of tune.
10
00:00:51,020 --> 00:00:53,600
It's- yes, it's inconvenient
that I have to stop in tune for
11
00:00:53,600 --> 00:00:54,020
sure.
12
00:00:54,020 --> 00:00:56,360
Lauren Arora Hutchinson: Brought
to us by our senior producer
13
00:00:56,390 --> 00:00:57,290
correspondent...
14
00:00:57,290 --> 00:00:58,730
Simon Adler: No inconvenience at
all.
15
00:00:59,150 --> 00:01:00,050
Lauren Arora Hutchinson: Simon
Adler.
16
00:01:00,890 --> 00:01:03,395
Simon Adler: So yeah, so a
couple months back now, I took
17
00:01:03,395 --> 00:01:06,245
the train down to Baltimore to
sit down with this guy.
18
00:01:06,245 --> 00:01:09,275
Loren Ludwig: I'm Loren Ludwig,
and I think the first line of
19
00:01:09,275 --> 00:01:13,415
the bio that I usually circulate
says I am a musician and music
20
00:01:13,415 --> 00:01:15,095
researcher based in Baltimore.
21
00:01:15,095 --> 00:01:18,365
Simon Adler: Loren is in his
40s. He is often sporting either
22
00:01:18,365 --> 00:01:22,835
a beanie or a hoodie, and that
day, like most, he had with him
23
00:01:22,835 --> 00:01:30,800
this kind of rare string
instrument, his viola da gamba.
24
00:01:30,800 --> 00:01:41,120
Kind of looks like a cello,
except with six or seven strings
25
00:01:41,120 --> 00:01:44,570
instead of four, and it is a
considerably older instrument
26
00:01:44,570 --> 00:01:48,350
than the cello. And for Loren,
at least, well, it just grabbed
27
00:01:48,395 --> 00:01:50,285
him from a very young age.
28
00:01:50,330 --> 00:01:53,090
Loren Ludwig: It had, it had,
you know, all of the recipes for
29
00:01:53,090 --> 00:01:56,720
fascination. It's other, and it
exists in some complicated
30
00:01:56,720 --> 00:02:01,010
relationship to the things that
exist now. And it's also, yeah,
31
00:02:01,010 --> 00:02:04,610
it's just such wonderful music.
So I found somebody to study
32
00:02:04,610 --> 00:02:05,060
with...
33
00:02:05,060 --> 00:02:05,780
and eventually
34
00:02:05,780 --> 00:02:11,240
...went to Oberlin Conservatory
out in Ohio to learn as much as
35
00:02:11,240 --> 00:02:17,210
I could learn about playing old
music on old instruments.
36
00:02:17,060 --> 00:02:17,150
Simon Adler: Right.
37
00:02:17,270 --> 00:02:19,460
Simon Adler: And I mean, this
instrument, it kind of became
38
00:02:19,460 --> 00:02:42,605
his life until that is two
39
00:02:42,605 --> 00:02:47,135
Loren Ludwig: colonoscopy
changed from 50 to 45.
40
00:02:47,135 --> 00:02:47,585
Simon Adler: Okay.
41
00:02:47,585 --> 00:02:50,285
Loren Ludwig: So I had this
colonoscopy and...
42
00:02:50,285 --> 00:02:52,595
Simon Adler: ...goes off without
a hitch, no big deal. And you
43
00:02:52,595 --> 00:02:56,045
know, then a couple weeks later,
he's at a music festival out in
44
00:02:56,045 --> 00:02:58,445
Texas when he gets an email...
45
00:02:58,445 --> 00:03:00,125
Loren Ludwig: ...saying that
there was a MyChart message for
46
00:03:00,125 --> 00:03:08,030
me,
47
00:03:08,030 --> 00:03:09,440
Simon Adler: the results?
48
00:03:09,420 --> 00:03:12,330
Loren Ludwig: I was not
expecting- I was expecting that
49
00:03:12,330 --> 00:03:16,440
I would get results, but wasn't
worried about the results.
50
00:03:16,440 --> 00:03:19,230
Loren Ludwig: So followed the
links to this. You know, it was
51
00:03:19,230 --> 00:03:27,090
a pathologist report and under
the diagnosis section was just a
52
00:03:27,090 --> 00:03:34,485
couple of sentences that said
adenocarcinoma and tubular
53
00:03:34,485 --> 00:03:38,805
adenoma. These words that I
didn't really know, but I know
54
00:03:38,805 --> 00:03:43,395
carcinoma feels like a word that
I've seen before. So, I
55
00:03:44,355 --> 00:03:48,675
immediately Googled
adenocarcinoma and was reading
56
00:03:48,675 --> 00:03:51,855
about it, and you know was
saying to myself like, "oh well,
57
00:03:51,855 --> 00:03:58,980
shit, this is clearly cancer,
and to the extent that I'm able
58
00:03:58,980 --> 00:04:02,820
to live past this, the next
months are definitely going to
59
00:04:02,820 --> 00:04:08,580
be like figuring this out."
60
00:04:08,580 --> 00:04:13,410
Simon Adler: Now, the process of
figuring this out, well, it was
61
00:04:13,410 --> 00:04:16,230
not at all what Loren imagined.
62
00:04:16,230 --> 00:04:18,270
Loren Ludwig: I totally expected
a different thing than I
63
00:04:18,270 --> 00:04:23,355
encountered. I had in my head
that, well, this is a scary and
64
00:04:23,355 --> 00:04:27,315
uncertain thing, and maybe I'm
going to die, but there will be
65
00:04:27,315 --> 00:04:30,315
this team of experts that are
going to help me understand how
66
00:04:30,315 --> 00:04:33,615
to think about it and how to
feel about it and what I need to
67
00:04:33,615 --> 00:04:39,375
do. And, there are indeed many
experts that helped me survive,
68
00:04:39,375 --> 00:04:47,940
but they also created a
terrifying mystery...
69
00:04:47,940 --> 00:04:51,840
Simon Adler: ...because he found
himself ultimately forced to
70
00:04:51,840 --> 00:04:57,180
make a decision that he did not
know how to make, a decision
71
00:04:57,180 --> 00:05:01,350
clouded by
Load full transcript
uncertainty that even
some of the best doctors in the
72
00:05:01,350 --> 00:05:11,835
world couldn't dispel for him,
but before he could even get to
73
00:05:11,835 --> 00:05:12,585
that decision...
74
00:05:12,765 --> 00:05:16,935
Loren Ludwig: I started to try
to reach somebody that could
75
00:05:16,935 --> 00:05:19,035
explain to me what the situation
was.
76
00:05:19,035 --> 00:05:21,525
Simon Adler: ...well, he had to
navigate the American medical
77
00:05:21,525 --> 00:05:21,975
system.
78
00:05:21,975 --> 00:05:24,585
Loren Ludwig: And I mean, you
know how hard it is to reach a
79
00:05:24,585 --> 00:05:27,105
doctor under under the best of
circumstances.
80
00:05:27,600 --> 00:05:29,040
Simon Adler: When he tried to
get in touch with the guy who
81
00:05:29,040 --> 00:05:31,650
did the colonoscopy, he
discovered that that guy had
82
00:05:31,650 --> 00:05:33,270
like disappeared
83
00:05:33,270 --> 00:05:36,540
Loren Ludwig: Yeah, I was never
able to get in touch with him,
84
00:05:36,540 --> 00:05:41,640
and my primary care doctor, she
was unreachable, and so I went
85
00:05:41,640 --> 00:05:47,280
through these weeks of not-not
being able to answer what seemed
86
00:05:47,280 --> 00:05:49,530
to me to be some straightforward
questions...
87
00:05:49,530 --> 00:05:52,455
Simon Adler: ...like how serious
is this? What are the survival
88
00:05:52,455 --> 00:05:53,025
rates?
89
00:05:53,025 --> 00:05:55,755
Loren Ludwig: What is even this
thing? How do I even say this
90
00:05:55,755 --> 00:05:58,365
word so that I can have a
conversation with somebody about
91
00:05:58,365 --> 00:06:03,195
it? I was-I was so confused
about so many things, like not
92
00:06:03,195 --> 00:06:06,675
just seeing that I was confused
and that I didn't even quite
93
00:06:06,675 --> 00:06:10,545
understand what I was confused
about. I'm calling different
94
00:06:10,545 --> 00:06:13,425
people. I'm just trying to talk
to people. Like somebody must
95
00:06:13,425 --> 00:06:14,910
have the knowledge I need.
96
00:06:14,930 --> 00:06:17,060
Simon Adler: And when he
eventually did find that person,
97
00:06:17,240 --> 00:06:25,010
well, unfortunately, it only
made the uncertainty worse. The
98
00:06:25,010 --> 00:06:28,550
doctor explained to him that
yes, they'd found a small amount
99
00:06:28,550 --> 00:06:32,420
of cancer in his colon, and it
was possible that that cancer
100
00:06:32,420 --> 00:06:37,985
had made it to his lymph nodes.
In which case, he was in serious
101
00:06:37,985 --> 00:06:43,115
trouble. However, it was also
possible that the cancer had not
102
00:06:43,115 --> 00:06:46,415
reached his lymph nodes, that
they had cut all of it out
103
00:06:46,415 --> 00:06:49,895
during the colonoscopy, and that
he was currently cancer-free and
104
00:06:49,895 --> 00:06:54,245
totally fine. But which of those
two is true...
105
00:06:54,245 --> 00:06:57,755
Loren Ludwig: ...was simply not
knowable without taking out a
106
00:06:57,755 --> 00:07:02,630
foot and a half of my colon to
see whether there's cancer in
107
00:07:02,630 --> 00:07:03,290
the lymph nodes.
108
00:07:03,470 --> 00:07:05,570
Simon Adler: And so, is that the
big decision point here? It's
109
00:07:05,570 --> 00:07:09,560
like, do I get this thing cut
out? Do I have them take out how
110
00:07:09,560 --> 00:07:10,400
how much of it was it?
111
00:07:10,400 --> 00:07:13,340
Loren Ludwig: Yeah, like a kind
of a foot and a half. So it came
112
00:07:13,340 --> 00:07:19,220
down to this question of, like,
okay, there's some number that
113
00:07:19,220 --> 00:07:23,735
we can assign to the likelihood
that the cancer has made it into
114
00:07:23,735 --> 00:07:26,075
the lymph nodes, and there's
some...
115
00:07:26,075 --> 00:07:26,705
Simon Adler: Probability.
116
00:07:26,660 --> 00:07:29,630
Loren Ludwig: ...some
probability, exactly, but
117
00:07:29,630 --> 00:07:33,140
everybody's got different ideas
of the numbers. So I'm getting
118
00:07:33,140 --> 00:07:36,350
ten percent, fifteen percent,
five percent, forty percent.
119
00:07:36,350 --> 00:07:38,270
Simon Adler: On top of that,
they're hitting him with how
120
00:07:38,270 --> 00:07:41,330
long he'll likely live if it's
reached the lymph nodes.
121
00:07:41,330 --> 00:07:43,580
Loren Ludwig: Numbers like less
than two years, less than a
122
00:07:43,580 --> 00:07:44,750
year, five years.
123
00:07:44,750 --> 00:07:45,770
Simon Adler: And on top of
that...
124
00:07:45,780 --> 00:07:48,000
Loren Ludwig: When I would talk
to clinicians about this
125
00:07:48,000 --> 00:07:51,360
surgery, the thing they wanted
to talk about first was the
126
00:07:51,360 --> 00:07:55,110
risks, and they were like,
"doing the surgery has some
127
00:07:55,110 --> 00:08:00,090
risks associated with it." And
so how do I, how do I make a
128
00:08:00,090 --> 00:08:02,910
decision? Like, I don't have an
equation for that.
129
00:08:02,930 --> 00:08:05,960
Simon Adler: Right, it sounds
like in an attempt to penetrate
130
00:08:05,960 --> 00:08:12,350
the uncertainty, they went to
math, and not straightforward
131
00:08:12,350 --> 00:08:16,010
math, but relational
probabilities.
132
00:08:16,210 --> 00:08:20,140
Simon Adler: ...that now you
need to have a math PhD. Are you
133
00:08:16,229 --> 00:08:16,739
Loren Ludwig: Right, yeah.
134
00:08:20,140 --> 00:08:21,130
a math guy? Like?
135
00:08:21,130 --> 00:08:23,260
Loren Ludwig: No, no, no,
assuredly not.
136
00:08:23,000 --> 00:08:26,270
Loren Ludwig: And and um, I'm
not. I'll never be an expert in
137
00:08:23,260 --> 00:08:23,350
Simon Adler: Okay.
138
00:08:26,270 --> 00:08:33,650
that stuff. And so, this was one
of those things of like, just
139
00:08:33,650 --> 00:08:37,790
how do I make a decision so that
I'll continue to be alive?
140
00:08:37,790 --> 00:08:41,240
Sounds dramatic to say it, but
the the stakes were pretty clear
141
00:08:41,240 --> 00:08:44,780
in terms of figuring that out as
a kind of life or death
142
00:08:44,780 --> 00:08:47,915
question. And again, I don't
want to be overly dramatic, but
143
00:08:47,915 --> 00:08:51,335
that's what it felt like. It
felt like there's-I need to I
144
00:08:51,335 --> 00:08:55,085
need to know the answer to this,
and the experience of not
145
00:08:53,855 --> 00:09:57,980
Gail Geller: thing before before
I retire, the one thing I wanted
146
00:08:55,085 --> 00:08:57,725
knowing the answer and not
knowing how to think about what
147
00:08:57,725 --> 00:09:01,625
the answer might be, plus not
trusting or having confidence
148
00:09:01,625 --> 00:09:07,205
that that the the medical
establishment was like taking
149
00:09:07,205 --> 00:09:10,025
care of it and asking the right
questions and coordinating with
150
00:09:10,025 --> 00:09:15,500
each other was a-was a uniquely
terrible experience.
151
00:09:57,980 --> 00:10:02,240
to do is just have a course for
medical students, called like I
152
00:10:02,240 --> 00:10:06,080
don't know 101." You know, just
like practice saying those
153
00:10:06,200 --> 00:10:07,070
words. I don't know.
154
00:10:08,180 --> 00:10:09,650
Simon Adler: So this is Gail.
155
00:10:09,780 --> 00:10:13,290
Gail Geller: Gail Geller. I have
been on the faculty at Johns
156
00:10:13,320 --> 00:10:17,700
Hopkins for 35 years in the
School of Medicine and the
157
00:10:17,700 --> 00:10:18,960
Berman Institute of Bioethics.
158
00:10:19,000 --> 00:10:21,700
Simon Adler: She has spent her
career studying uncertainty, and
159
00:10:21,700 --> 00:10:25,090
she says that the various forms
of it that Loren faced with his
160
00:10:25,090 --> 00:10:28,660
diagnosis, about what his
doctors were thinking, about how
161
00:10:28,660 --> 00:10:33,310
he was even feeling, well, those
have just become hallmarks of
162
00:10:33,310 --> 00:10:34,270
medicine today.
163
00:10:34,270 --> 00:10:37,660
Gail Geller: In medical
practice, in medical education,
164
00:10:37,660 --> 00:10:38,170
yes.
165
00:10:38,230 --> 00:10:41,710
Simon Adler: Well, and so to ask
perhaps a stupid question, like,
166
00:10:42,280 --> 00:10:44,845
what actually is uncertainty?
167
00:10:44,845 --> 00:10:47,155
Gail Geller: Well, at the risk
of, I mean, I don't want to
168
00:10:47,155 --> 00:10:50,305
sound too academic about this,
but...
169
00:10:50,305 --> 00:10:52,135
Simon Adler: I'll reel you back
in if it gets too academic.
170
00:10:52,165 --> 00:10:57,265
Gail Geller: Well, no, I mean,
so, so there's this idea that
171
00:10:57,265 --> 00:11:04,915
uncertainty is an umbrella term
for risk and ambiguity.
172
00:11:05,070 --> 00:11:05,190
Simon Adler: Okay.
173
00:11:05,610 --> 00:11:07,680
Gail Geller: So when you're
talking about risk, you're
174
00:11:07,710 --> 00:11:10,710
talking about situations where
the probabilities are known,
175
00:11:11,400 --> 00:11:16,050
whereas you know ambiguity
arises in situations where the
176
00:11:16,200 --> 00:11:17,820
probabilities are unknown.
177
00:11:18,300 --> 00:11:21,930
Simon Adler: So this is the
known unknowns, unknown
178
00:11:21,960 --> 00:11:24,870
unknowns. Is that Rumsfeld? Was
that Donald Rumsfeld's thing?
179
00:11:24,930 --> 00:11:25,050
Gail Geller: Yeah, yeah.
180
00:11:25,050 --> 00:11:25,290
Simon Adler: Okay.
181
00:11:25,380 --> 00:11:29,190
Gail Geller: So those are two
very, very distinct forms of
182
00:11:29,190 --> 00:11:29,820
uncertainty.
183
00:11:29,880 --> 00:11:32,370
Simon Adler: Neither of which,
she says, really used to be all
184
00:11:32,370 --> 00:11:33,570
that present in medicine.
185
00:11:33,570 --> 00:11:36,600
Gail Geller: In the early days
when you know basically all we
186
00:11:36,600 --> 00:11:40,920
had was antibiotics for
infection, the doctor was the
187
00:11:40,920 --> 00:11:46,485
expert, and that doctor, mostly
men, but he or once in a blue
188
00:11:46,485 --> 00:11:50,205
moon, she would know what was
needed to be known.
189
00:11:50,420 --> 00:11:52,880
Simon Adler: We knew less.
Things were simpler, and so, in
190
00:11:52,880 --> 00:11:57,980
a sense, there was just less
uncertainty. But then, that
191
00:11:57,980 --> 00:11:59,930
really changed with one moment.
192
00:11:59,930 --> 00:12:01,430
Gail Geller: I think yes.
193
00:12:01,430 --> 00:12:01,790
Simon Adler: Okay.
194
00:12:01,790 --> 00:12:04,190
Gail Geller: I'm not sure
whether I'm identifying that
195
00:12:04,190 --> 00:12:07,700
because it happens to coincide
so beautifully with my career.
196
00:12:07,700 --> 00:12:09,050
Which I mean, you know...
197
00:12:09,050 --> 00:12:11,270
Simon Adler: Every philosopher
believes that they're the last
198
00:12:11,270 --> 00:12:14,270
philosopher. They are at the end
of the Hegelian arc, so it's
199
00:12:14,315 --> 00:12:17,315
fine. You're-you're amongst a
great tradition of people here.
200
00:12:17,315 --> 00:12:19,925
Gail Geller: So I would say the
Human Genome Project.
201
00:12:19,925 --> 00:12:21,875
Archive: We are here to
celebrate the completion of the
202
00:12:21,875 --> 00:12:25,925
first survey of the entire human
genome.
203
00:12:25,925 --> 00:12:26,405
Simon Adler: Okay.
204
00:12:26,405 --> 00:12:29,975
Gail Geller: 1990 is when the
Human Genome Project was
205
00:12:29,975 --> 00:12:30,815
started...
206
00:12:30,815 --> 00:12:35,465
Simon Adler: This massive effort
to map every A, C, T, or G of
207
00:12:35,465 --> 00:12:37,055
our genetic code.
208
00:12:37,040 --> 00:12:39,905
Gail Geller: ...and the people
who were working in genetics
209
00:12:37,810 --> 00:12:44,500
Archive: It will revolutionize
the diagnosis, prevention, and
210
00:12:39,905 --> 00:12:41,465
were so confident.
211
00:12:44,500 --> 00:12:46,990
treatment of most, if not all,
human diseases.
212
00:12:46,990 --> 00:12:50,440
Gail Geller: ...that genetics
was going to be the answer to
213
00:12:50,440 --> 00:12:51,250
everything...
214
00:12:51,310 --> 00:12:53,770
Archive: Alzheimer's,
Parkinson's, diabetes, and
215
00:12:53,770 --> 00:12:54,520
cancer.
216
00:12:54,520 --> 00:12:59,350
Gail Geller: ...all the unknown
questions we've had, and it's
217
00:12:59,350 --> 00:13:06,325
answered some questions, but has
raised so many more.
218
00:13:06,325 --> 00:13:08,455
Simon Adler: Like, take for
example, she says before the
219
00:13:08,455 --> 00:13:09,685
Human Genome Project...
220
00:13:09,745 --> 00:13:12,745
Gail Geller: ...you were either
well or you were sick.
221
00:13:12,745 --> 00:13:16,105
Simon Adler: You were presenting
with the problem or you weren't.
222
00:13:16,105 --> 00:13:16,615
Gail Geller: Yeah.
223
00:13:16,615 --> 00:13:19,345
Simon Adler: Whereas after,
there was this third totally new
224
00:13:19,345 --> 00:13:20,305
category:
225
00:13:20,305 --> 00:13:24,505
Gail Geller: the at-risk patient
that's neither sick nor well,
226
00:13:24,580 --> 00:13:30,130
but may be sick or living with a
risk factor and may not ever
227
00:13:30,130 --> 00:13:32,050
develop that condition...
228
00:13:32,050 --> 00:13:34,720
Simon Adler: ...putting both
patients and doctors in a really
229
00:13:34,720 --> 00:13:35,470
difficult spot...
230
00:13:35,500 --> 00:13:38,770
Gail Geller: ...because doctors
have this massive amount of
231
00:13:38,770 --> 00:13:42,250
information they have to
understand themselves,
232
00:13:42,250 --> 00:13:45,820
communicate to their patients at
the same time that the patients
233
00:13:45,820 --> 00:13:51,595
are coming in with, you know,
demanding more information about
234
00:13:51,595 --> 00:13:56,425
their risk, and so you know,
medical school has to evolve.
235
00:13:56,425 --> 00:13:59,365
You know, medical school has to
become more and more about
236
00:13:59,365 --> 00:14:05,545
teaching you a way of thinking
and how to find the information
237
00:14:05,545 --> 00:14:10,705
that you need, not this sort of
we have all the information and
238
00:14:10,900 --> 00:14:12,220
you just need to memorize it.
239
00:14:13,200 --> 00:14:15,390
Simon Adler: But if uncertainty
in medicine can be seen as a
240
00:14:15,390 --> 00:14:23,700
problem, she says, it can also
be seen weirdly as progress.
241
00:14:23,700 --> 00:14:27,270
Look at Loren's situation, she
says, yes, it was full of
242
00:14:27,270 --> 00:14:31,560
uncertainty, and yes, it was
miserable. But the very presence
243
00:14:31,560 --> 00:14:34,980
of that uncertainty was a
consequence of our
244
00:14:35,025 --> 00:14:39,315
ever-expanding knowledge. Like
he could only be uncertain about
245
00:14:39,315 --> 00:14:42,525
what he should do because we
knew that he should get screened
246
00:14:42,525 --> 00:14:47,295
at 45, and because we know how
to biopsy polyps, and because we
247
00:14:47,295 --> 00:14:50,355
know how to remove 18 inches of
your colon without automatically
248
00:14:50,355 --> 00:14:54,615
killing you, and in that way,
she says, the uncertainty he
249
00:14:54,615 --> 00:15:00,510
faced, as painful as it was, it
is a feature of the system we've
250
00:15:00,510 --> 00:15:03,330
built, not a bug.
251
00:15:06,030 --> 00:15:08,370
Gail Geller: Absolutely,
absolutely.
252
00:15:09,000 --> 00:15:10,830
Simon Adler: I love this
argument you've laid out that
253
00:15:10,830 --> 00:15:16,200
there was this explosive growth
in knowledge that led to truly
254
00:15:16,200 --> 00:15:19,860
more uncertainty when it came to
medical diagnoses: if only
255
00:15:19,860 --> 00:15:23,490
because we knew more, there were
now more questions to ask. And,
256
00:15:23,490 --> 00:15:26,430
you are advocating for a
different approach inside the
257
00:15:26,430 --> 00:15:29,340
medical system that could
alleviate some of the tension
258
00:15:29,340 --> 00:15:33,015
that that uncertainty has
caused, but what we haven't
259
00:15:33,015 --> 00:15:37,155
discussed yet is the sort of
larger medical infrastructure,
260
00:15:37,155 --> 00:15:41,475
the demands on doctors to see
patients in 15 minutes, and how
261
00:15:41,475 --> 00:15:47,025
do you fit these ideas of yours
into that without demanding the
262
00:15:47,025 --> 00:15:49,725
whole thing be rebuilt from the
bottom up?
263
00:15:49,725 --> 00:15:52,245
Gail Geller: Yeah, I've thought
a lot about this...
264
00:15:52,245 --> 00:15:53,415
Simon Adler: I'm sure you have.
265
00:15:53,415 --> 00:15:55,785
Gail Geller: ...because it you
know that question's been asked
266
00:15:55,815 --> 00:15:57,330
a lot, and...
267
00:15:57,330 --> 00:15:58,530
Simon Adler: You're telling me
I'm not original?
268
00:15:58,480 --> 00:16:02,485
Gail Geller: No, no, no. You
have been amazingly original.
269
00:16:02,574 --> 00:16:08,270
You know, I sort of cringe when
I hear the excuse, and you know,
270
00:16:08,359 --> 00:16:13,788
because because I've heard it my
entire career, you know that
271
00:16:13,877 --> 00:16:19,306
that we don't have time, and I
don't mean to be unempathic. I
272
00:16:19,395 --> 00:16:25,002
think doctors are overwhelmed,
overworked, all of that, but but
273
00:16:25,091 --> 00:16:30,164
I don't- I think we have to
support them in understanding
274
00:16:30,253 --> 00:16:35,950
that it doesn't it doesn't have
to take a lot of time. It has to
275
00:16:36,039 --> 00:16:41,557
take a lot of letting go. There
was a dean, I believe it was a
276
00:16:41,646 --> 00:16:46,541
dean of- at Harvard, who gave a
lecture at some medical
277
00:16:46,630 --> 00:16:51,970
education conference, and he
said, "you know, I do, I do the
278
00:16:52,059 --> 00:16:57,666
orientation for students every
year." And he said, "I start the
279
00:16:57,755 --> 00:17:02,917
orientation with, you know,
welcome to medical school. I'm
280
00:17:03,006 --> 00:17:08,435
here to tell you that 50% of
what you're about to learn isn't
281
00:17:08,524 --> 00:17:14,043
true, and furthermore, I can't
tell you what 50%
that is." You
282
00:17:14,132 --> 00:17:19,383
know the the simple- it's not
simple actually, it's kind of
283
00:17:19,472 --> 00:17:25,168
profound in a way, to start the
whole process with the idea that
284
00:17:25,257 --> 00:17:30,775
we are in this great exploration
together. And-and frankly, to
285
00:17:30,864 --> 00:17:35,848
me, that's the kind of ideal
doctor. It's the doctor who
286
00:17:35,937 --> 00:17:40,921
says, "yes, we will learn as
much as we can about what's
287
00:17:41,010 --> 00:17:46,261
knowable. We'll get to the
answer if the answer is knowable
288
00:17:46,350 --> 00:17:50,000
today, and we'll play with all
the rest."
289
00:17:50,050 --> 00:17:52,150
Simon Adler: Were there pieces
of music you were working on as
290
00:17:52,300 --> 00:17:53,680
this uncertainty was swirling?
291
00:17:54,690 --> 00:17:56,220
Loren Ludwig: You know, I
haven't- I haven't...
292
00:17:56,280 --> 00:17:57,690
Simon Adler: Again, Lauren
Ludvig.
293
00:17:57,720 --> 00:17:59,760
Loren Ludwig: ...there's-there's
one song actually that I was
294
00:17:59,760 --> 00:18:03,600
playing a lot at that point that
takes me to that place.
295
00:18:03,600 --> 00:18:04,380
Simon Adler: Can I hear you
playing?
296
00:18:04,410 --> 00:18:06,420
Loren Ludwig: Yeah, yeah.
That's-that's this great this
297
00:18:06,420 --> 00:18:10,050
great tune called Bonaparte
Crossing the Rhine of all
298
00:18:10,170 --> 00:18:42,345
things. Yeah, that that that was
a that was a thing... was kind
299
00:18:42,345 --> 00:18:45,270
of sitting there and playing
that tune and letting my mind
300
00:18:45,270 --> 00:18:48,690
wander and you know-
301
00:18:48,760 --> 00:18:50,140
Simon Adler: Where would your
mind wander as you were
302
00:18:50,200 --> 00:18:50,890
practicing that?
303
00:18:52,000 --> 00:18:56,050
Loren Ludwig: Well, you know, I
was trying to make this decision
304
00:18:56,050 --> 00:19:02,680
about this surgical
intervention, and because I
305
00:19:02,680 --> 00:19:05,260
didn't have the information, and
I didn't know how to think about
306
00:19:05,260 --> 00:19:07,450
it, and I didn't know what I
didn't know, and all of that,
307
00:19:07,450 --> 00:19:13,360
there was just a lot of
ruminating on it. Kind of what
308
00:19:13,360 --> 00:19:18,685
you know, sort of sometimes
maybe not in a great way of just
309
00:19:18,685 --> 00:19:21,715
kind of cycling. And when you
have a tune like that, kind of
310
00:19:21,715 --> 00:19:24,415
going underneath, and you're
yeah, you discover oh, I've just
311
00:19:24,415 --> 00:19:27,085
been playing this thing again
and again for ten minutes, and
312
00:19:27,085 --> 00:19:32,125
and I've been thinking about all
these things, you know.
313
00:19:32,125 --> 00:19:35,005
Simon Adler: What was the what
was the decision point? Was
314
00:19:35,005 --> 00:19:38,005
there a moment?
315
00:19:39,140 --> 00:19:43,670
Loren Ludwig: What I eventually
came away with was that the idea
316
00:19:43,670 --> 00:19:49,430
of discovering that the cancer
had made it into my lymph nodes,
317
00:19:49,430 --> 00:19:54,380
and I had chosen to not do the
procedure, that would be a very
318
00:19:54,380 --> 00:19:58,880
difficult conversation to have
with myself. So, I eventually
319
00:19:58,880 --> 00:20:03,905
got there. And the surgery was
fine. The several days in
320
00:20:03,905 --> 00:20:07,535
recovery didn't go well for a
number of frustrating reasons
321
00:20:07,535 --> 00:20:10,115
that are kind of along the lines
of I'm going to say like the
322
00:20:10,115 --> 00:20:13,115
institution not quite having
their act together in the places
323
00:20:13,115 --> 00:20:16,025
that they needed to at that
moment, and that was hard and
324
00:20:16,025 --> 00:20:21,965
frustrating and sucked actually.
But also I'm still alive. They
325
00:20:21,965 --> 00:20:24,365
didn't find any cancer in the
lymph nodes. I feel like I
326
00:20:24,365 --> 00:20:27,410
can't. I-I really have nothing
to complain about here.
327
00:20:27,930 --> 00:20:30,240
Simon Adler: What we're two
years out from this? May? We're
328
00:20:30,240 --> 00:20:31,470
coming up on two years.
329
00:20:31,530 --> 00:20:31,800
Loren Ludwig: Yeah, yeah.
330
00:20:32,010 --> 00:20:34,560
Simon Adler: You're still here,
and you're cancer free.
331
00:20:34,560 --> 00:20:36,480
Loren Ludwig: Cancer free, so
far as I know. Knock on wood.
332
00:20:36,510 --> 00:20:36,810
Simon Adler: Okay.
333
00:20:36,900 --> 00:20:36,990
Loren Ludwig: Yeah.
334
00:20:38,220 --> 00:20:40,890
Simon Adler: I'm very happy to
hear that.
335
00:20:40,890 --> 00:20:41,490
Loren Ludwig: Thank you.
336
00:20:41,490 --> 00:20:44,310
Simon Adler: But two years out,
I guess, what it- what meaning
337
00:20:44,310 --> 00:20:46,950
do you pull from all of this?
338
00:20:46,930 --> 00:20:50,620
Loren Ludwig: I think if I
hadn't been so distracted trying
339
00:20:50,620 --> 00:20:56,500
to dispel the uncertainty, like
if I'd known in advance that
340
00:20:56,500 --> 00:20:59,110
it's the uncert- it turtles all
the way down, it's uncertainty
341
00:20:59,110 --> 00:21:01,810
all the way down. There's not
really you don't really hit a
342
00:21:01,810 --> 00:21:06,310
bottom there, both like
institutionally and in relation
343
00:21:06,310 --> 00:21:09,895
to a particular patient, and in
relation to cancer and prognoses
344
00:21:09,895 --> 00:21:14,785
more more generally, that I
might have maybe next time when
345
00:21:14,785 --> 00:21:17,605
I'm dealing with something like
this, I won't be so distracted
346
00:21:17,605 --> 00:21:19,825
by the uncertainty part of it,
and somehow feeling like if I
347
00:21:19,825 --> 00:21:23,035
just cure the uncertainty, then
I can somehow make myself
348
00:21:23,035 --> 00:21:25,585
healthy again. It's like no, no.
There's going to be a ton of
349
00:21:25,585 --> 00:21:28,645
uncertainty. You're not going to
know it. You're not- you're just
350
00:21:28,645 --> 00:21:31,405
that- that is the cloud.
That's-that-that is what's hard
351
00:21:31,405 --> 00:21:45,850
about the whole thing, you know?
I basically look at this whole
352
00:21:45,850 --> 00:21:48,700
thing not as like, oh, I could
have known, but I just somehow
353
00:21:48,700 --> 00:21:54,250
couldn't access the information.
I look at it as like the
354
00:21:54,250 --> 00:21:59,725
uncertainty isn't that
dispellable in a lot of cases,
355
00:21:59,725 --> 00:22:05,245
and in fact, you still have to
make decisions and feel things,
356
00:22:05,245 --> 00:22:08,875
and don't get distracted by
trying to get yourself certainty
357
00:22:08,875 --> 00:22:18,055
because it's not actually going
to be available.
358
00:22:45,045 --> 00:22:46,995
Lauren Arora Hutchinson: Gut
Strings is an original
359
00:22:46,995 --> 00:22:50,415
production by the
Dracopoulos-Bloomberg iDeas Lab
360
00:22:50,415 --> 00:22:55,035
at the Johns Hopkins Berman
Institute of Bioethics. This
361
00:22:55,035 --> 00:22:59,385
production is inspired by
Professor Gail Geller's 35 years
362
00:22:59,385 --> 00:23:06,000
of social and ethical research
on medical uncertainty. Special
363
00:23:06,000 --> 00:23:08,850
thanks to Loren Ludwig for
sharing his personal
364
00:23:08,850 --> 00:23:14,010
experiences. This was written
and produced by Simon Adler.
365
00:23:14,010 --> 00:23:19,500
Viola de Gamba musical
performance by Loren Ludwig. Our
366
00:23:19,500 --> 00:23:23,430
executive producers are Lauren
Aurora Hutchinson and Tony
367
00:23:23,430 --> 00:23:29,760
Phillips. Sound engineering by
Alexander Overington. Production
368
00:23:29,760 --> 00:23:35,025
assistance from Brian Ricker.
Our administrative coordinator
369
00:23:35,025 --> 00:23:40,425
is Leah Lord. This production
was funded by Johns Hopkins
370
00:23:40,425 --> 00:23:44,505
Program in Arts, Humanities, and
Health, which is led by Gail
371
00:23:44,505 --> 00:23:50,055
Geller, Kamna Balhara, and Loren
Ludwig.