Booknotes

Ms. LISA BELKIN (Author, "First Do No Harm"): Well, it's from Hippocrates.
Everyone thinks it's the Hippocratic oath--it's not. But it is from the
writings of Hippocrates. And more important, it's what every medical student
learns as sort of the first rule of medicine, that at first, do no harm. And
what I found striking about it was the idea that nowadays medicine has gotten
so complicated and there's so much we can do that it's impossible to tell
where the harm is. In other words, is it more of a harm to keep a patient
alive or is it more of a harm to let them die? And given that this is what
doctors are taught and yet there are no answers, it struck me that
that's--that's what it's all about.

LAMB: Where did you first get the idea for this book?

Ms. BELKIN: Partly from life and partly from reporting. I'm a reporter for
The New York Times. I was based in Houston at the time. You can't live in
Houston and not be aware of the medical center there. It's 55 acres, 53
buildings, 50,000 people. And I did a lot of reporting from there and asked a
lot of questions. And the reason I was there was because my husband at the
time was doing a medical fellowship and he would come home with stories of
just the tough decisions. And the two things together led the reporter in me
to say, `OK. Fine. Well, who decides? Who makes these decisions?' And I
started looking around the medical center for that answer and I discovered
something called the Ethics Committee, which at the time was fairly
unusual--it was five years ago. And now almost every hospital has one. It's
a committee of people that does exactly what it sounds like, that makes
decisions that one doctor does not feel he or she can handle alone.

LAMB: Now you said your husband was--a medical fellowship. What's he do?

Ms. BELKIN: He is a pediatric cardiologist. He mostly does genetic
research. And I did not write about the hospital that--that he was at. But
these--these are questions that are at every hospital and that every doctor
has to face.

LAMB: Where do you live now?

Ms. BELKIN: Right now I'm living back in New York. I'm covering health care
full time for The Times in New York and am struck again by the fact that the
things that I saw in Houston, I'm now seeing in New York, that--they're
everywhere.

LAMB: And you--you--your--the center of attention here is primarily the
Hermann Hospital. Where's that?

Ms. BELKIN: Hermann Hospital is the first hospital in this huge Texas medical
center. It was the anchor, so to speak. It has a very interesting history,
which is partly what made it fun to write about and sort of revealing to write
about. It was founded in the--at the turn of the century at the time when
hospitals were first becoming places that could actually do something. Until
then, they were places you ended up when--when there was no hope and your
family couldn't take care of you anymore.

And it was founded by a very eccentric, hypochondriacal old man named George
Henry Hermann, who was very wealthy and left all his money in trust to
found a hospital. He wanted it to be a charity hospital. But the trustees
that he named were his fellow oil barons, who decided that George really
didn't mean this. He really wanted it to be a grand hospital like they had
back East. And they spent all the money, rather than just a portion of the
money, to build a hospital that they could only afford to operate if they took
paying patients rather than charity patients.

So the hospital never became what it was supposed to be. And over the years,
there were a series of lawsuits to bring it back to its original purpose. And
when you're going in to write about the role of money in medicine and to write
about medical ethics, it's very interesting to be in a hospital that has
basically been grappling with those issues since--since the moment it was
founded.

LAMB: When did you first go to Houston?

Ms. BELKIN: I got there in 1987 and the book is basically based--it's the
story of the summer of 1988. But I spent four years sitting in on this
committee at--at al--all their meetings, which was remarkable to me that they
allowed me in. It was the sort of place that outsiders--usually they don't
get to go.

LAMB: Who's the most interesting person of all the ones you covered?

Ms. BELKIN: Oh, I--I wouldn't say most interesting. The person that I
became the most intrigued with, I guess, would have been a doctor called
Ha--named Javier Asavez, who was very young when he came to Houston. He came
there because his own son was diagnosed with cancer. And Javier was trained
in Mexico and came to the United States with his son and ended up finishing
his pediatric training in Houston. And he--when he was back in Mexico he was
struck at what--how little medicine could do to save a patient. And when he
came to sort of this shining medical center, what struck him was how much and
sometimes too much. And he was treating patients and beginning to wonder
whether or not we were saving them for a life that was worth living.

One little girl came in severely burned over 90 percent of her body. And he
was thinking--hi--his thoughts became, `Well, what happens when this girl
lives? What are we saving her for? And who will be there to take care of
her?' And he founded a--a sort of a ho--a clinic within the hospital for
these chronically ill children who need extremely intense care and who nobody
else is there for, who most pediatricians just aren't qualified and
knowledgeable enough to care for for their entire lives.

And in the course of this chronic care program, he ended up becoming
responsible for the--the child, who's actually one of the main stories
that--that I tell in the book named Patrick Desmuke. And Patrick had a very
complicated condition of the digestive tract. Basically, he couldn't digest
his food. And he had to be fed, since he couldn't eat, through a tube that
literally carried nutrition into his body. At first, it was put in sort of
the peripheral veins, like an IV tube, and then all of those collapsed, and
they had to open him up and put the tube directly into his heart, and his
nutrition went into his heart.

And Javier was responsible for this young boy's care. He became extremely
emotionally attached to the child. Everyone in the hospital was emotionally
attached to the child. He--he was an adorable, impish, wisecracking little
boy who was in the hospital for almost all of his 15 years, who went home with
the nurses on--on--for dinner and on vacations and went to all their weddings.
And Javier was put in the position of having to decide: How much more surgery
can we do on this child? How many more times can we crack open his chest and
put a tube in, knowing that eventually it will become infected and we'll have
to go in again and he'll he--keep getting sicker?

And what I find intriguing about him is watching this young doctor come to
terms with the fact that there are some patients that--that it's OK to fail,
that there are some things that, even with modern medicine, you simply cannot
do, and eventually--and--and that's a lot of the story of the book is how he
finally made peace with the fact that he could not save every child.

LAMB: Did you meet Patrick?

Ms. BELKIN: I did meet Patrick. And he--he knew I was writing the book. I
don't think it's giving away too much to say that Patrick dies at the end of
the story. And I think he really liked the idea that someone was writing a
book about him. And he--he was that kind of child. I think he would have
gotten a kick out of it.

LAMB: Where was he from?

Ms. BELKIN: He was from the poor side of town in Houston. His mother worked
many jobs. When I met her, she was working in the cafeteria at Hermann, a job
that the social workers had gotten for her so she could be closer to her son.
And she grilled hamburgers, and then, when her shift was over, she came up and
she kind of sat by his bed. And she was utterly exhausted, emotionally and
physically, by having a sick child for 15 years. And they had a very
complicated relationship that a lot of the nurses didn't understand. They
accused her of not caring. She, in some fairly candid moments, said, `You
know, I--I know when they want to talk to me. I know when they want to tell
me that he's dying, but I hide from them. I don't want to hear it.' And all
they saw was a mother who was never around when they needed to talk to her.

But she--she was trying to do the best for her child when she felt she had no
control in the areas that most parents--I mean, she--she had no say over what
he ate, over when he slept. He was constantly in the hospital. And she often
wondered, I think, whether or not the doctors and the nurses could actually be
better parents to him than she could because she'd almost ceded responsibility
over to them.

LAMB: How many kids did she have?

Ms. BELKIN: She had three. She had two others at home who--who--and this is
one of the--the complications of illness that doesn't get a lot of attention,
because it's not medical, but the whole family felt the stress and the other
two children felt like their younger brother was getting all the attention.
And Arrio, Patrick's mother, often wondered whether, you know, her other--she
was allowing her other two children to sort of waste away and--and paid no
attention to them because her son simply sapped so much, financially and
emotionally, from her.

LAMB: Who paid for those 15 years?

Ms. BELKIN: Mostly we did. Medicaid paid for most of it. The family had no
money. And the way Medicaid works is that it only pays for a certain number
of days in the hospital and then the money runs out. And then you have to be
out of the hospital for a certain amount of time before they will start paying
again. Well, Patrick was in and out like a revolving door, so he used up his
money, and then he rarely was out long enough for it to kick back in. So I
guess the answer is not just Medicaid. The answer is Medicaid and Hermann
Hospital, who ran up an astronomical, incalculable bill. I mean, I tried very
hard to find what the--the total figure was, and I got bits and pieces. But
15 years of care, they--they stop keeping track. I mean, it was--it was long
lost into the system. And he's only one child in one hospital. And the cost
of care for--for these sorts of children or--or people with chronic illness
is--is indescribable.

LAMB: Does Hermann Hospital have to take everybody that shows up on their
doorstep?

Ms. BELKIN: Yes. That was actually one of the results of the lawsuits--one
of the lawsuits over the trust--is that they are a trauma center and they are
required, by law, to take everyone who comes in. The--the medical center
in--in Houston works unlike a lot of other places where there are hospitals
that do not have to take everybody who comes in the door, or--or maybe
technically they do but they get around that by not having an emergency room.
And so that gives an even larger burden to those hospitals who are required
to--to take everyone.

LAMB: I think I remember reading in your book that there are two million
people a year that go through the Texas Medical Center.

Ms. BELKIN: Yes. Yes.

LAMB: Two million?

Ms. BELKIN: Yes, it is.

LAMB: Is it the largest in the country?

Ms. BELKIN: It is among the largest in the country. It depends how you
measure it. It depends whether you measure it by patients or by number of
hospitals and--and I'm not sure where--I--I had it memorized once where it
ranked on each of those lists. But it is certainly among the largest in the
country.

LAMB: How many hospitals are there at the Texas Medical Center?

Ms. BELKIN: I believe there are about 15, depending on how you describe them.

LAMB: Are they all in the same area?

Ms. BELKIN: They're all within walking distance of each other.

LAMB: Are they--is there any kind of a coordination there?

Ms. BELKIN: Oh, there's--there's coord--it's a small city. There are
overground and underground passageways that are air-conditioned against the
Houston heat. And if you've ever been in Houston in the summer you'll
understand why. They have coordinated laundry services. They have their own
internal police force. They have an internal transportation system. I mean,
it really is its own city.

LAMB: Now h--what kind of access did you have and what kind of life did you
lead during this period? Again, it was in 1988...

Ms. BELKIN: Mm-hmm.

LAMB: ...for--from May to October?

Ms. BELKIN: Yeah, May to October. Speaking of summer, I ha--I told the
publisher that this is about a summer at a Houston hospital. And they said,
`Well, it's not a summer because it's from, you know, May to October. And
that's not the summer.' And I said, `You've never been to Houston.' So it
was one hot summer, and the access they gave me was fairly remarkable. I--I
simply asked and they said, `Yes,' which is a credit to them and, I think, a
sign of the--partly a sign of the faith that they had that what they were
doing, though difficult and imperfect, was basically well-intentioned.

I think it was also because of the very complicated history of the hospital
and they had just had yet another in the series of what are known as the
Hermann scandals, and they were very determined to show that they were open
to all comers and I was the first one, I think, who came. But I said, `I'm
interested in what this Ethics Committee does. I'd like to watch it operate.'
And they said, `Fine.' And they gave me a parking pass. They gave me an ID
card, and they put me on the call list for the Ethics Committee, so that
every time this committee was called to have a consultation on a case, when
they called the doctors to assemble, they also called me. And so it was
several months of racing to the hospital very quickly and sitting in on
some--some fairly powerful meetings.

LAMB: Was there anything you couldn't write?

Ms. BELKIN: My agreement with them was that I would not use any information
about a patient unless I had the permission of that patient. They realized
that the usual rules, which were, `We will not let you in so you can even see
what is going on until we have the patients' or the families' permission,'
didn't apply here because you were dealing with people at the absolute crisis
moment of their lives. And to walk over to a family who's about to go into an
Ethics Committee on some of the--and make some of the decisions that these
people were making and say, `Excuse me. We have this reporter over here. Do
you mind if she sits in?' Most people who might have said yes later would
have said no then. And even those who said yes then, I didn't feel, could
really comprehend what it was that they were agreeing to.

So what Hermann said they would do is they would allow me in and then I would
have to get the retrospective permission of the families who I observed to use
what I saw, and if they said no, then I would pretend I never heard it. And
that's the way it worked. And what amazed me was that of--I would say I saw
about 26 to 27 cases in the course of the time that I sat in. There are seven
in the book. I approached about a dozen families to ask if I could go into
their stories further and only two of them said no.

LAMB: What was the reason for saying no?

Ms. BELKIN: One was a very difficult AIDS case where the mother of the
patient, a 27-, 28-year-old man--his mother did not know, A, that he had AIDS
or, B, that he was gay until the moment that the hospital called and informed
her that her son was in a coma. And she lived in a very small town and was
certain that having this in a book would tarnish her--her son's memory and
just did not want to talk to me and--and part of the deal was that I wasn't
going to browbeat and I wasn't going to a--ask a lot more questions. But she
was as emotionally distraught, I think, as--as anyone could be.

And the second case was an--a severely handicapped and retarded young girl
whose family was certain that the doctors were talking about--the--the doctors
assembled the family together and said, `You know, you have to think about the
long-tem--term care for this child and what kind of decisions you want to make
down the line, because she's--she's not going to live as long as you or I.
She has things that are wrong with that will have--will kill her early. And
you should think about whether or or not you want her to--to be made DNR,
which is do not resuscitate--how much effort you want if she were to get truly
sick.' And the family was certain that they doctors were trying to kill their
daughter and that's why they were asking these questions. And they were
equally suspicious, I think, of me. And--and so they said no.

But those were the only two cases. For everyone else--when you're going
through something like this, it is the single most important thing in your
life. And what we tend to think of as intrusion, to them was simply
conversation and explanation. They wanted to talk about it. They wanted to
explain h--what they did and how they felt. And--and several of them have
told me since that--that it helped, that it was a catharsis of sorts.

LAMB: Were you ever in the operating room?

Ms. BELKIN: Not for any of these cases. I have as a reporter been--been in
operating rooms and was surprised at my own reaction. I thought that I would
have to sort of hold it together and pretend that I was kind of a macho
journalist and this wasn't bothering me. And, in fact, I found it
riveting. The idea that when--when you see someone being operated on, when
you see into someone's body and that--that--that all of that is going on in
there, and that--that surgeons can manipulate it and change it, I just found
utterly fascinating.

LAMB: You dedicated this book to Bruce, to Evan, and to Grandma Pearl.

Ms. BELKIN: I did.

LAMB: Who are those three people?

Ms. BELKIN: Bruce is my husband, who was--who I--I s--write in the
acknowledgements is--is a--as perfect an example, I think, if you can find of
a doctor who combines compassion with--with skill. Evan is my son, who's two
years old and who was born while I was writing this book. And Grandma Pearl
is my grandmother, who was probably one of the most important influences on my
life and who died while I was writing this book. And there were lessons about
medical care from all three.

LAMB: Why was she so influential?

Ms. BELKIN: She was just one of these great women who was determined to get
every ounce of--of energy and--and enjoyment and intellectual stimulation out
of life. And she also decided, when she was diagnosed with cancer, that she
had lived a full life and a wonderful life and that they could put her back in
the hospital and they could probably keep her alive for a little longer, but
it would be on a lot of tubes and in a place that was alien to her. And she
asked her family--me and--and my parents and my siblings and cousins--to
promise her that she would not have to go back to the hospital. And we
promised. And she didn't. And it was both wrenching and wonderful to--to
help her go through that--wrenching because we were losing her and wonderful
because she got to die at home in her own bed, surrounded by her family, with
a remnant of dignity and control over her life that she would have lost in the
hospital, and that was extremely important to her.

LAMB: Where you there when she died?

Ms. BELKIN: No, and that was part of the wrenching part. I was--she died
two weeks before my son was born. And I was in Houston and she was in New
York and I couldn't fly. So I--I got to say my goodbyes, but three months
earlier.

LAMB: How old was she?

Ms. BELKIN: Eighty-seven.

LAMB: Evan...

Ms. BELKIN: Evan.

LAMB: ...is two years old.

Ms. BELKIN: Yes, he is.

LAMB: Now in this book you write a lot about Jake and Taylor.

Ms. BELKIN: Mm-hmm.

LAMB: Who were they?

Ms. BELKIN: Jack and Taylor were twins. They were born four weeks too--four
months too soon. Their mother, Fran Porche, felt just fine, went for a
checkup and was told by her doctor that she was already fairly dilated and
they gave her medication and that didn't stop the--the labor and--which she
couldn't feel. I mean, she felt absolutely fine. And then they helicoptered
her to Hermann Hospital and tried everything they could there to stop the
labor. They even put telephone books under the foot of the bed, so she was
literally on a slant, hoping that, you know, gravity would--would keep the
babies from being born.

But Jake and Taylor were both born at 24 weeks, which, like I say, is four
months before they were supposed to be born. And they were extremely small,
both about a pound. Jake died within hours. Taylor lived. Taylor was a
fighter, but she was an extremely sick little girl. And the story in the book
is the story of the parents' realization of exactly how sick Taylor was. For
the first two months of her life, there was a doctor to whom Fran and Cary
became extremely attached, who saw it as his job to sort of ease them into the
realization that Taylor probably wasn't going to live, and if Taylor lived,
she would be physically devastated.

And this was something that the doctor didn't feel that they could handle in
one blow, so he gradually kind of coaxed them to--to that conclusion. And
when they reached it, almost the day that they reached it, the doctor
changed--the attending doctor in the ICU switched. And the new doctor was a
woman who equally firmly believed that you--that her job was not to kill
babies, that she did not go into this profession to give up. And neonatology
is an extremely aggressive line of medicine. It d--it really does attract
people who--you know, no holds barred. They're going to fight to the finish.

LAMB: Is this Sharon Crandell, by the way?

Ms. BELKIN: This is Sharon Crandell. And Sharon felt that the parents were
being premature, that this baby was not vegetative. She ha--had her eyes open
and was looking around. She--there was some hope. Sharon agreed that it was
extremely slim hope, but that there was some hope. And when there is hope,
you do everything. And Fran and Cary looked at the same baby and saw a little
child who was being tortured, and they asked for a meeting of the Ethics
Committee. And the decision of the committee was that it would be both legal
and ethical if the machine was turned off. And it was--I won't say as
difficult for Sharon as it was for the parents, because that isn't possible.
But it was surprisingly difficult for Sharon, given that you think--you know,
we think of doctors as--as, `Well, they can handle this, and they're tough and
they've seen it all before.' And particularly this doctor, who came off
extremely tough and, many say, the parents in particular thought, extremely
cold, but she had a v--a very hard time turning off this ventilator and spent
a lot of time crying both before and after.

LAMB: You paint her as being a--a--you referred to her a couple of times as
being a pixie?

Ms. BELKIN: Yeah, she's--she's a very small, sweet-looking woman and it sort
of belies her--her toughness.

LAMB: Did she talk to you?

Ms. BELKIN: Oh, yeah. Yeah. She--I didn't write about anyone who I didn't
talk to in--in great detail. And I also...

LAMB: But let me ask you before you--did you follow her--when you followed
her around and you talked to her, did you take notes or did you record it?

Ms. BELKIN: A little of both. A little of both. I started out in the
committee meetings only taking notes, because I felt that the tape recorder
would be intrusive, that it was a very private, intimate setting and I could
kind of write under the table--and everyone was taking notes. But to plop a
tape recorder down in the middle just seemed like an intrusion of technology,
which is kind of ironic, since most of what we were talking about was the
intrusion of technology. After a while, when everyone got used to me, I
started taping.

I followed Sharon around on several occasions. I--I talked to her a lot in
her office, I followed her around and I spent a day in the neonatal ICU with
her, and there I--I took notes.

LAMB: What does neonatal mean?

Ms. BELKIN: Neonatal means immediately after birth, and these were babies
who were mostly born too soon or who upon birth had something extremely wrong
with them and so they ended up there.

LAMB: Cary Porche, the father of the twins.

Ms. BELKIN: Mm-hmm.

LAMB: You--you're right up and close and personal at the last moments of
their lives where he's stroking the baby's head. I mean, these are in--in the
case of the--of Taylor, she was--What?--three months old?

Ms. BELKIN: She was three months old.

LAMB: How did you get that?

Ms. BELKIN: Even I am not an aggressive enough journalist to try and be there
when parents are holding a baby who's dying. I was not there. That was the
description of Fran, the description of Cary, the description from Sharon and
the description from members of--of their family.

LAMB: Did Cary Porche tell you the words that he was using?

Ms. BELKIN: Yes. And there were...

LAMB: I mean, because he was talking to that...

Ms. BELKIN: Mm-hmm.

LAMB: ...to that three-month-old child.

Ms. BELKIN: Mm-hmm. I said, `What did you say to her? Tell me exact'--you
know, `Pretend you're back there and tell me what you said to her, and, you
know, and--and what did you two do? And where were you sitting?' And I
obviously can't swear that every single word is the same, but it's
interesting, the sort of trancelike state that people get into when you're
telling them, `Go back and tell me what you said.' And it's remarkable how
they start speaking not as if they're sitting there with you, but as if
they're back where--where you've asked them to go, particularly something this
emotional and--and memorable.

LAMB: Then in your epilogue you say that you called Cary Porche after--you
know, as you were writing this thing, and read it back to him or gave him the
transcript. Explain--and he--he said...

Ms. BELKIN: Yeah.

LAMB: What did he say to you?

Ms. BELKIN: Actually Cary called me. Fran and Cary did not come to the
Ethic Committee meeting. They felt that they knew what they wanted, that this
was best for Taylor, that they had cried about it and they had prayed about it
and that this was the decision that they could live with. And so they didn't
see this as a meeting for them. They saw it as a meeting for Sharon, who was
having a hard time with their decision. And at the meeting there was a lot of
discussion about why the parents weren't there, and it troubled a lot of the
doctors that the parents weren't there. And one member, in particular, who
was the chairman of the committee, said she wished that the parents had come
because she thought that at some point in the future they would begin to doubt
their decision and it would be important to them to have a memory of 12
doctors saying, `It's OK. You did the right thing.'

And when I finished the book, I sent the pages that were about the people to
the people so that they could--I mean, there were a lot of facts, and I don't
claim to be infallible and I needed someone to--to stopgap it. And I also
felt that I owed it--if I had taken this much from people I owed it to them
that they could see what it was that I was writing about them before their
neighbor went and bought it in the bookstore.

And, interestingly, almost no one asked for major changes. I mean, nobody
said, `I don't like the way I look,' even people who I thought would be
extremely uncomfortable with the way they looked. But I sent it to Fran and
Cary. And Cary had called me at 2:30 one morning...

LAMB: AM?

Ms. BELKIN: ...AM--and said, `I just read it, and I read the part where
Sharon says, "I've n--never taken a ventilator off a baby whose eyes are open
before. You know, she's looking at me."' And Cary said, `I didn't know her
eyes were open. You know, Lisa, did we do the right thing?' And I th--what
I did was remind him of what had happened in the committee meeting, the fact
that the chairman wanted them to know that 12 doctors thought they did the
right thing. And he said, `But do you think I did the right thing?' And I
said, `Yes, I think you did,' because I mean, I had had four years to think
about it, and I would have made exactly the same decision that they did. I
just think that there's so much technology and sometimes we forget that using
it doesn't solve a problem, it just creates more.

LAMB: Who paid the bills and how much did it cost them?

Ms. BELKIN: I don't remember the exact figure of what it cost them. They
were very well-insured, and money was not an issue. And I think it--that left
them emotionally freer, in a way, because I have spoken to families who don't
think that life s--support should be continued but they're afraid that people
are going to think that they just don't want the--to spend the money. Fran
and Cary were not worried about spending the money.

LAMB: I want to ask you about the Ethics Committee. Before we do that, where
are you from originally?

Ms. BELKIN: Originally, I'm from New York--Long Island.

LAMB: Where did you grow up?

Ms. BELKIN: Merrick, Long Island.

LAMB: What do your parents do?

Ms. BELKIN: My dad is an orthodontist. My mother is an attorney.

LAMB: How many siblings?

Ms. BELKIN: One of each. My brother, Gary, is actually a medical person
himself. He's an MD. He's going to be a psychiatrist. And my sister is--has
just gotten her PhD in neurobiology and I don't understand a word she says.

LAMB: And where did you go to school?

Ms. BELKIN: John F. Kennedy High School in Bellmore, Long Island and, more
recently than that, Princeton.

LAMB: And what did you study at Princeton?

Ms. BELKIN: Politics--nothing having to do with hospitals.

LAMB: What after Prin--what year did you get out of Princeton?

Ms. BELKIN: '82.

LAMB: And then where did you go?

Ms. BELKIN: Then I went straight to The Times. I--it's the only place I've
ever worked. I started out clerking, answering their phones and--and
delivering copy and ended up--and writing in my spare time. And s--that led
eventually to a reporting job, and I've been doing that now for 11 years.

LAMB: Go back to that--that--when did you go to work for The Times? '82?
'81?

Ms. BELKIN: '82, summer of '82?

LAMB: How did you get the job?

Ms. BELKIN: I wrote a letter and applied and there--one of the reporters
there had a clerk program where he took someone on every year, and I basically
worked for him and--and did research for him. And then, in my spare time,
which is--was the deal, I wrote stories that ran without a byline, but they
ran. And that was what was of interest.

LAMB: Who was the reporter you worked with?

Ms. BELKIN: Hedrick Smith, who is--has books much better now than this one.

LAMB: And why do you think--I mean, what was it that you brought to them
that they wanted?

Ms. BELKIN: The Times has a history of taking in sort of people who are
overeducated for the task and bringing them into the newsroom and letting them
do the--the work that needs to be done to keep a newsroom running and also be
its sort of eyes and ears for the paper and do stringing and do clerk work and
do reporting. And then they weed out--it's sort of a--a Darwinian process,
but the people who--who are still standing at the end get to be reporters.

LAMB: What in the first place attracted you to The New York Times?

Ms. BELKIN: It was partly The Times and partly journalism. What--what
attracted me to journalism was kind of gravitational pull. I mean, I was
graduating from college and I looked and I said, `OK, fine, where--where are
my qualifications here?' And they were summers and--and extracurricular
activities and they were all journalistic. It was--whenever I had a choice of
what to do with my spare time, that's what I ended up doing. And The
Times--well, it was The Times. It was--I mean, there--I couldn't believe that
I was there at 22. I figured it would take me many more years than that. But
it's--it's a fascinating institution.

LAMB: Why were you sent to Houston?

Ms. BELKIN: Largely--actually because Bruce, my husband, was doing his
fellowship there, and the idea of me in New York and him in Houston for four
years did not sound like a way to start a marriage. So I ended up transferring
to the Houston bureau and--and working from there.

LAMB: Where--where did you meet Bruce Gelb?

Ms. BELKIN: I met him at the movies, actually. Two friends set us up
and--and they were right.

LAMB: What year?

Ms. BELKIN: This was '80--we met in '86--winter of 1986.

LAMB: And in the...

Ms. BELKIN: A very cold day.

LAMB: You remember the day?

Ms. BELKIN: Oh, of course, I remember the day.

LAMB: Wh--when you were sent to Houston, did you know--did you have an
interest in the medical beat before you got there...

Ms. BELKIN: Yeah.

LAMB: ...because of all the medicine around you?

Ms. BELKIN: I've always had an interest in medicine. I h--I joke that if
you didn't have to take chemistry and physics, then I would have been a
doctor, but you do, so I'm not. It's, I think, as compelling a subject as
there is. I mean, it's literal life and death and--and all the emotions and
decisions and--and levels that that brings out. So I've always had an
attraction to the field. And I--in Houston, that sort of became--came to the
forefront, because the medical center was there. And like I said, it was such
a--a huge part of the city that as a reporter I just ended up doing stories
there often. And that, plus the book--eventually, I realized I actually
have--had come to know something about this. And when I came back to New
York, my editor said, `What would you like to cover?' And we agreed that this
would make sense. So...

LAMB: Your son was born two years ago--Evan.

Ms. BELKIN: Mm-hmm.

LAMB: Did--was it ever--was it ever difficult during that process--and
there's another baby in here, Landon, I believe.

Ms. BELKIN: Right.

LAMB: Was it very difficult--ever difficult for you to write about it in the
middle of your pregnancy?

Ms. BELKIN: Yes, extremely. I, until this point, had simultaneously prided
myself and worried about myself because stories didn't get to me. I mean,
I--I had seen a lot of very sad things and I saw them--I realized this was a
good story, I went back to the office and I wrote about them and it--I didn't
take it home with me. This, I took home with me. And it was obviously
because my life was paralleling the lives of some of the people that I was
writing about. I was sitting and writing the parts in the book about Fran and
Cary and the babies being born when Fran was 24 weeks pregnant, and I was 24
weeks pregnant. And I was very emotional and I was crying a lot, and I
finally realized that `Well, this--this is just stupid. This is insanity.
You can't torture yourself this way.' And I moved on to s--another part of
the book that was also upsetting, but didn't have to do with babies being born
at--at 24 weeks.

But what it did was--until that--that happened--until I got that upset, until
I realized I had to stop, I thought I understood what--what parents like Fran
and Cary would be going through when they had to make a decision like this. I
realized that I didn't have the slightest idea what Fran and Cary must be
going through and that the closest I could come to comprehending it was the
realization that I probably didn't really understand. So it taught me a lot.
I think it helped the writing, but it was--it was a difficult experience. And
it made me think a lot of `Well, what would I do?' And that's why I could
give Cary such an honest answer when he said, `Did I do the right thing?'
because I had thought about it not only in an intellectual author way, but I
had thought about it in a mother way. And--and it was very real to me when I
was 24 weeks pregnant how I felt about that pregnancy and how I would feel if
suddenly something went wrong.

LAMB: Anything wrong with your little boy?

Ms. BELKIN: No. Evan--knock on wood--is--is a very healthy, happy child
and--and an absolute delight.

LAMB: Where was the baby born?

Ms. BELKIN: He was born in the medical center at--in Methodist Hospital in
Houston. He's a native Houstonian, a native Texan.

LAMB: And right now where's your husband?

Ms. BELKIN: He's practicing--well, he's doing research. He's on the staff at
Mount Sinai Hospital in New York City.

LAMB: Ethics Committee?

Ms. BELKIN: Mm-hmm.

LAMB: Every so often in this book--and by the way, what's this--is this
supposed to mean anything, this cover?

Ms. BELKIN: You can ask the publisher.

LAMB: You do not know?

Ms. BELKIN: I have no idea.

LAMB: Did you like it?

Ms. BELKIN: I think it--it's interesting. I think what it's--actually,
it's--it invokes sort of the--the kind of marble stone view of--of medicine
and the idea that it's--it's crumbling and being ripped apart is--well, that's
my interpretation of it.

LAMB: Ethics Committee. What's the committee?

Ms. BELKIN: The committee is different at every hospital. At Hermann, it was
a group of 23 people from every specialty. Neonatology, which we talked
about, was heavily represented because there were a lot of choices of these
sorts made there. But every speciality of doctor--social workers, nurses,
chaplains--the hospital lawyer was a member of the committee. And not all of
them came to every meeting because it depended on who was available at the
time the meeting had to be held.

LAMB: What's a quorum?

Ms. BELKIN: Six. And they almost always had more.

LAMB: And where did they meet?

Ms. BELKIN: They met in room 3485, which is a very nondescript conference
room where things got very emotional and very heated.

LAMB: How often would they meet?

Ms. BELKIN: It depended on how often they were called, but sometimes as
often as once a week, sometimes less than once a month an...

LAMB: How much notice did they have to be given?

Ms. BELKIN: That also depended on how urgent the decision was. They were
all fairly urgent but split-second decisions are not things for this committee
to make. That's what doctors make at bedside, so they often had at least a
couple of hours, if not a day or two. It was...

LAMB: What kind of power did they have?

Ms. BELKIN: They were very careful to say that they do not make decisions,
they simply make recommendations. And yet, in the three years that I sat in
on meetings, there wasn't one time where their recommendations were not
ultimately listened to. And they realized that power. And it made a lot of
them somewhat nervous.

LAMB: What's their legal status?

Ms. BELKIN: Actually, they came about because a lot of these cases were
being brought to court and the courts made it clear that the hospital could
decide them on their own if they showed that it was a well-thought-out,
carefully considered decision, and that would free--I mean, hospitals were
afraid, back in the--the late '70s that, if they allowed doctors to start
removing ventilators, then they would be held legally responsible. And the
court said, `No, you have the right to make that decision, but you have to
show us that it was a carefully considered decision.' And that's where the
ethics committees came from.

LAMB: You say that they needed a quorum of six. Was there ever a time that
you saw somebody maneuvering to get certain people there?

Ms. BELKIN: No. It was not that--that Machiavellian. They really--the
people who asked for the consult was usually the doctor on the case. And the
people who collected the members and--and called them together was never the
doctor on the case. So even if a doctor wanted to get certain people there so
that the decision supported him, I--or her, I--I don't know that that would
have been possible.

LAMB: Who chose the members of the executive committee?

Ms. BELKIN: The members of the executive...

LAMB: I'm sorry.

Ms. BELKIN: The members of the Ethics...

LAMB: The members of the Ethics--Ethics Committee?

Ms. BELKIN: Different but--they--a lot of them were self-selecting. I mean,
there were people who had a real interest in this subject and who came to Lynn
Weeks, who was the chairman at the time, and said...

LAMB: Who is she, by the way?

Ms. BELKIN: Lynn was the di--is a director of nursing at Hermann, and she
actually is no longer a member of the committee. It just got too
overwhelming. But at the time that I was there, she was, and she was a lot of
the reason why I was allowed the access I was--was that she--she really
believed that what she was doing was important. But a lot of people asked to
be on it. And then she approached people who she felt would round out the mix
of--of her committee, that, you know, would represent people who needed to be
represented.

LAMB: Landon...

Ms. BELKIN: Mm-hmm.

LAMB: And by the way, before we run out of time, we've talked about Taylor
and Jake, the twins.

Ms. BELKIN: Right.

LAMB: We've talked about...

Ms. BELKIN: Patrick.

LAMB: ...Patrick. There's Landon, who was...

Ms. BELKIN: There's Landon and Hermondo, are the other two that are the
major cases.

LAMB: Who was Landon?

Ms. BELKIN: Landon was a baby who was born to a wonderful couple
named--excuse me--Kenny and Claire Sparks, who had been trying to have a baby
for seven years, and she had gotten pregnant and they were thrilled. And
about a month or so before the baby was due, the baby arrived and had a very
severe case of spina bifida, which is a problem with the spinal cord.
Essentially, it doesn't close properly. And depending how high up the lesion
is on the baby will determine how severe the injury and--and the--what this
child will or will not be able to do. And doctors told the parents that this
was about as severe a case as they'd ever seen.

And one doctor--excuse me one second before I lose my voice here--one doctor
suggested that they not do anything, that they not do a fairly standard
operation to close the lesion on the back and simply let the baby die because
the life that he would have was--he wouldn't be able to walk or talk or sit or
see or hear. I mean, the predictions were--were ominous--excuse me. And
other doctors said that--or the other major doctors said that this would be
manslaughter, that this was a standard operation and there was no reason not
to do it and advised the parents strongly to--to--to do the surgery. And here
were parents who had no medical training and who were ping-ponging back and
forth between two doctors who were giving them heartfelt and well-reasoned
advice, but completely different advice. So eventually the committee was
called to make a decision.

LAMB: And...

Ms. BELKIN: The decision was interesting. Although every doctor in the room
except for the one who had called the meeting because he felt that the
operation should be done--excuse me--it's relevant to health care here. I'm
losing my health.

LAMB: And you've--What?--you're in the middle of a cold, which doesn't help,
either.

Ms. BELKIN: Exactly. But every doctor in the meeting said that if it were
his or her baby that they would not do the surgery, and yet they worried that
because these parents were undecided there would be sort of legal
ramifications if they gave them that advice. So they advised the parents to
do the surgery, even though they wouldn't have done it for their own child.

LAMB: There is...

Ms. BELKIN: You talk, I'll drink.

(Audio loss)

LAMB: ...start. We'll just start again at that juncture.

Ms. BELKIN: Oh, my...

LAMB: There's no--there's this...

Ms. BELKIN: ...my worry is not getting my voice back. It's, like, gone.
Jesus.

LAMB: It's tough to keep talking. Take your time.

Ms. BELKIN: OK.

LAMB: I have--I have been out here live where I--the same thing happens and
you're live. You can't--you haven't got anyplace you can go.

Ms. BELKIN: I know, but I--I have no more voice. It--it's gone. It's just
gone.

Unidentified Stagehand: She needs some more. We are prepared as we...

Ms. BELKIN: OK.

LAMB: Would you rather have hot--something hot to drink?

Ms. BELKIN: Oh, yeah, that would be great, some tea.

Stagehand: You want some coffee or tea?

Ms. BELKIN: Tea. Tea--tea, perfect.

LAMB: You're doing real well. I'm--we--we ha--we may have to--we have 13
minutes to go so...

Ms. BELKIN: You don't mind if sh--it's a little short, do you?

LAMB: Yeah, we do. It's got to fit--you know, everything's got to fit in
television. It's like I was at lunch today, went down the wrong pipe and I
thought I was never going to recover.

Ms. BELKIN: Now I know how Bill Clinton feels.

LAMB: And you don't even have a--a--a pizza esophagus problem.

Ms. BELKIN: Nope.

LAMB: Are you any relation to--or is--I'm--I'm sorry. Is your husband any
relation to the other Bruce Gelb?

Ms. BELKIN: No.

LAMB: The--the Bush Bruce Gelb?

Ms. BELKIN: He gets his mail. Sometimes he gets invited to a lot of, like...

LAMB: Brist--Bristol-Myers, is that it or...

Ms. BELKIN: We get invited to a lot of $1,000-a-plate benefits. I don't
know what I'm going to do if this doesn't come back, guys. OK. I'm just not
going to talk.

LAMB: Yeah, just take your time. We're not...

Stagehand: Your tea is on the way.

Ms. BELKIN: Thank you.

LAMB: I knew you were going to say that about this cover. You jus--it's
jus--it's the ugliest thing I've ever seen. You didn't do that. I bet--I bet
people do that.

Ms. BELKIN: Well, what I didn't say is that it is much better than the
previous version, which I screamed and yelled and would not let them put on,
but...

(Remaining portion of the program was cut off)

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