Booknotes

LISA BELKIN, AUTHOR, "FIRST, DO NO HARM": Well, it’s from Hippocrates. Everyone thinks it’s a 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, 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 what it’s all about.

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?

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. 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.

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

BELKIN: Right now I’m living back in New York. I’m covering health care full time for the Times in New York. And I’m struck again by the fact that the things that I saw in Houston I’m now seeing in New York. They’re everywhere.

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 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 stories of lawsuits to bring it back to it’s 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 the moment it was founded.

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

BELKIN: Oh, I wouldn’t say most interesting. The person that I became the most intrigued with I guess would have been a doctor called – named Javier Aceves 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 how little medicine could do to save a patient. And when he came to sort of this shining medicine 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 – 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 – sort of a clinic within the hospital for these chronically ill children who need extremely intense care and nobody else is there for, who most pediatricians just aren’t qualified and knowledgeable to care for, for their entire lives. And in the course of this chronic care program he ended up becoming responsible for the child who’s actually one of the main stories that I tell in the book named Patrick Dismuke.

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 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, wise-cracking little boy who was in the hospital for almost all of his 15 years, who went home with the nurses 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 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 it’s OK to fail; that there are some things that even with modern medicine you simply cannot do. And eventually – 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.

BELKIN: I did meet Patrick. And 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 somebody was writing a book about him. He was that kind of child. I think he would have gotten a kick out of it.

BELKIN: He was from the poor side of town in Houston. His mother worked many jobs. When I met her she was working at the cafeteria in 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 moment said 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 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.

BELKIN: She had three. She had two others at home 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.

Oria, Patrick’s mother, often wondered whether you know her other –she was allowing her other two children to sort of waste away and pay no attention to them because her son simply sapped so much financially and emotionally from her.

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 total figure was and I got bits and pieces. But 15 years of care, they – they stopped 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 these sorts of children or people with chronic illness is indescribable.

BELKIN: Yes. That was actually one of the results of the lawsuit. 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 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 maybe technically they do, but they get around it by not having an emergency room. And so that gives an even larger burden to those hospitals who are required to take everyone.

BELKIN: Yes.

BELKIN: Yes. It is…

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 I’m not sure where – I had it memorized once. Where it ranks on each of those lists, but it is certainly among the largest in the country.

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

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

BELKIN: Oh, there’s – it’s a small city. There are over ground 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 it’s own city.

BELKIN: Yes, May to October. Speaking of summer, I told the publisher that this was 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 the 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 fairly powerful meetings.

BELKIN: My agreement with them was that I would not use any information about a patient unless I had a 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 patient through the family’s permission didn’t apply here because you were dealing with people at the absolute priceless 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 are making and say, excuse me, we have this reporter over here, do you mind if she sits in? Most people might’ve 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 that 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.

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 son’s memory, and just did not want to talk to me.

And part of the deal was that I wasn’t going to brow beat and I wasn’t going to ask a lot more questions. But she was as emotionally distraught, I think, as anyone could be.

And the second case was in a severely handicapped and retarded young girl whose family was certain that the doctors weren’t talking about – the doctors assembled the family together and said you know you have to think about the long-term care for this child and what kind of decisions you want to make down the line because she – she’s not going to live as long as you or I. She has things that are wrong with her that will kill her early, and you should think about whether or not you want to her 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 the 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 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 what they did and how they felt. And several of them have told me since that it helped; that it was a catharsis of sorts.

BELKIN: Not for any of these cases. I have, as a reporter, been – been in operating rooms, and a little surprised at my own reaction. I thought that I would have to sort of hold it together and pretend that I was a macho journalist and this wasn’t bothering me.

And in fact I found it riveting. The idea that when you see someone being operated on, when you see into someone’s body and that all of that is going on in there and that surgeons can manipulate it and change it, I just found utterly fascinating.

BELKIN: I did.

BELKIN: Bruce is my husband who was – who I write in the Acknowledgements is as perfect of an example I think you can find of a doctor who combines compassion 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 of my life and who died while I was writing this book. And there were lessons about medical care from all three.

BELKIN: She was just one of these great women who was determined to get every ounce of energy 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 a lot of tubes and in a place that was alien to her.

And she asked her family, me 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.

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.

BELKIN: Eighty-seven.

BELKIN: Evan.

BELKIN: Yes.

BELKIN: Jake and Taylor were twins. They were born four weeks too – four months too soon. Their mother, Fran Poarch, 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 labor. And – but 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 gravity 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 who Fran and Carey 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 they could handle in one blow. So, they gradually kind of coaxed them 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 really does attract people who no holds barred; they’re going to fight to the finish.

BELKIN: Sharon Crandell. And Sharon felt that the parents were being premature, that this baby was not vegetated. She 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 Carey 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 is impossible. But it was surprisingly difficult for Sharon given that we think of doctors 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, parents in particular thought extremely cold. But she had a very hard time turning off this ventilator, and spent a lot of time crying both before and after.

BELKIN: Yes. She’s a very small, sweet looking woman. And it sort of belies her toughness.

BELKIN: Oh, yes. Yes. She – I didn’t write about anyone who I didn’t talk to in great detail. And I also…

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 several occasions. I talked to her a lot in her office. I followed her around. I spent a day in the neonatal ICU with her. And there I took notes.

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.

BELKIN: She was three months old.

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 Carey, the description from Sharon and the description from members of their family.

BELKIN: Yes. In other words…

BELKIN: I said, what did you say to her? Tell me – you know, pretend you’re back there and tell me what you said to her and you know what did you two do and where were you sitting? And I obviously can’t swear that every single word was the same, but it’s interesting the sort of trance-like 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 you’ve asked them to go, particularly something this emotional and memorable.

BELKIN: Actually, Carey called me. Fran and Carey did not come to the ethics committee meeting. They felt that they knew what they wanted, that this was best for Taylor, that they’d cried about it and they’d 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 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 stop gap it. And I also felt that I owed it, that if I’d taken this much from people that I owed it to them that they could see what it was that I was writing about them before their neighbor or they bought it in the bookstore.

And interestingly almost no one asked for major changes. I mean, no one 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 said it to Fran and Carey, and Carey called me at 2:30 one morning.

BELKIN: A.M. And said I just read it and I read the part where Sharon says I’ve never taken a ventilator off a baby whose eyes were open before. You know she’s looking at me. And Carey said I didn’t know her eyes were open; Lisa, did we do the right thing? And I – 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 had four years to think about it and I would’ve 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.

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 that left them emotionally freer in a way because I have spoken to families who don’t think that life support should be continued, but they’re afraid that people are going to think that they just don’t want to spend the money. Fran and Carey were not worried about spending the money.

BELKIN: Originally I’m from New York, Long Island.

BELKIN: Merrick, Long Island.

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

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.

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

BELKIN: Politics, nothing having to do with hospitals.

BELKIN: ’82.

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

BELKIN: ’82, summer of ’82.

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

BELKIN: Hedrick Smith, who has books much better known than this one.

BELKIN: The Times has the history of taking in sort of people who are overeducated for the task and bringing them into the newsroom and letting them do the work that needs to be done to keep a newsroom running, and also be 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 Darwinian process. But the people who are still standing at the end get to be reporters.

BELKIN: It was partly the Times and partly journalism. What attracted me to journalism was kind of a gravitational pull. I mean, I was graduating from college and I looked to him and I said OK, fine, where are my qualifications here? And they were summers 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, 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.

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 the way to start a marriage. So, I ended up transferring to the Houston bureau and working from there?

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

BELKIN: This was – we met in ’86, winter if 1986, a very cold day.

BELKIN: Oh, of course I remember the day.

BELKIN: Yes.

BELKIN: I have always had an interest in medicine. I joke that if you didn’t have to take chemistry and physics then I would’ve been a doctor, but you do so I’m not. It’s – I thinks it’s as compelling a subject as there is. I mean, it’s literal life and death and all the emotions and decisions and levels that that brings out.

So, I’ve always had an attraction to the field. And in Houston that sort of became – came to the forefront because the medical center was there. And like I said, it was such 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 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.

BELKIN: Right.

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 had seen a lot of very sad things and I saw them. I realized this is a good story. I went back to the office and I wrote about them and I didn’t take it home with me.

This I took home with me. And it was obviously because my life was paralleling some of the lives of the people that I was writing about. I was sitting and writing the parts in the book about Fran and Carey 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 this is just stupid. This is insanity. You can’t torture yourself this way. And I moved onto another part of the book that was also upsetting, but didn’t have to do with babies being born at 24 weeks.

But what it did was until that happened, until I got that upset, until I realized I had to stop, I thought I understood what parents like Fran and Carey 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 Carey 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 well, what would I do? And that’s why I could give Carey 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.

BELKIN: No. Evan Wood (ph) is a very healthy, happy child and an absolute delight.

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

BELKIN: He’s practicing. Well, he’s doing research. He’s on staff at Mount Sinai Hospital in New York City.

BELKIN: You can ask the publisher. I have no idea.

BELKIN: I think it’s interesting. I think what it’s – actually it invokes sort of the marble stone view of medicine and the idea that it’s crumbling and being ripped apart. Well, that’s my interpretation of it.

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 specialty 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.

BELKIN: Six. And they almost always had more.

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

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

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 hours if not a day or two notice…

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

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 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 committee came from.

BELKIN: No. It was not that – not 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 called them together was never the doctor on the case. So, even if the doctor wanted to get certain people there so that the decision supported him or her, I don’t know that that would have been possible.

BELKIN: Members of the executive…

BELKIN: Members of the ethics…

BELKIN: A lot of them were self-selecting. There were people who had a real interest in the subject and who came to Lin Weeks (ph), who was the chairman at the time…

BELKIN: Lin (ph) was the – 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 that I was, was 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 her committee, that you know would represent people who needed to be represented.

BELKIN: Right.

BELKIN: Patrick.

BELKIN: There’s Landon and Armando are the other two that are the major cases.

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 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 – 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 a 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 doctor 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 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.

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.

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.

BELKIN: You talk, I’ll drink.

BELKIN: A sports writer and a wonderful sports writer. He also had a child who has cystic fibrosis and who lived through sort of the nightmare of a chronically ill child and the decisions that you have to make. And he wrote about it in a – a wonderful book, which was made into a movie, and which I learned a lot from.

So, I – I mean, I don’t know the man. I just called him one day and said hi, I wrote this book and would you read it? And he did and said some nice things about it. But that – to me he’s not only a wonderful sports writer but he really sort of is the soul of what – what I was trying to write about.

BELKIN: Right.

BELKIN: Again, I sent it to him and was very surprised. I got a letter back, and you know from college days that thin envelopes are bad and fat envelopes are good. And there was this thin envelope in my box at work and it was return address Denton Cooley. And quite honestly I almost didn’t open it because OK great, he’s saying no. And he said you know you can use this if you like. And I liked. So, they put it on the back of the book.

BELKIN: Yes. Armando was in a lot of ways one of the most difficult cases in the book because it was about a subject that doctors and ethics committees try very hard to say they don’t deal with, and that’s money. But the secret is they do deal with it because there’s no way to be involved in health care today without dealing with the issue of money.

And Armando was a 27-year-old young man with no money, a sort of migrant worker who had come into the United States illegally from Mexico and was now here legally. He had qualified for amnesty.

And he was at a birthday party; a fairly wild birthday party at which a dispute over some watered down whiskey got him shot in the back of the head. And he was – the bullet landed as far up in the neck as it can, sort of right at the base of his skull without being in his brain.

And he was shot in a small town in the middle of Texas. And he was brought to the county hospital there. And they realized that they were not equipped to deal with what was wrong with this man. They stabilized him and they called Hermann Hospital.

And Hermann was on what was called fly by at the time, which meant that their trauma unit was full. Their emergency room could not handle any more trauma cases. And they were not taking incoming air ambulances. But the word on this young man was that he was going to be a donor; that he wouldn’t survive and that he was otherwise healthy. And they agreed to accept him.

And to their credit, they did not wheel him into the corner and wait for him to die. They saved his life. But in saving his life they were then, as the Chinese proverb goes, responsible for it.

BELKIN: Organ donor. That he would die and they could use his heart and his liver as organs.

BELKIN: That was what the folks at the outlying hospital told the Lifelight ambulance people. And they agreed to come get him.

BELKIN: Yes, the helicopter. And, so he was there and his care was costing up to $1,000 a day. And this was a hospital that was going bankrupt and did not have the spare $1,000 day.

BELKIN: Hermann. But had no place to send him. I mean, he was on a ventilator. He was paralyzed from the jaw down. He could do nothing for himself. His family was extremely poor. Communication was a problem because they spoke no English. And what were they going to do with this man who would live a long time and cost a lot of money?

And the question became who would pay. And the debate in the hospital took on an almost – I mean, it made everyone uncomfortable that they had to be talking about pennies and dollars and what to spend for this man. I mean, the question of do you have the psychiatry service come and see him the way you would any patient who was in this condition? But that cost money.

And he was a very small man. And when they finally got him into a wheelchair he slumped, he slid. He couldn’t sit up right. And that was a problem because it meant he couldn’t learn to do simple things like use a mouth stick to operate a computer keyboard which meant that as some point maybe he could work. Or even do something as simple as operate the remote control in a television set and have some choice over some part of his life.

But he couldn’t do those things if he couldn’t sit up in his wheelchair. And he couldn’t sit up in his wheelchair unless he had a specially custom designed wheelchair, which would cost about $3,000. And there was a raging debate among you know social workers and doctors and staff as to whether or not to spend $3,000 to get this man a custom made wheelchair.

They eventually transferred him to a facility in the area that took care of dependent quadriplegics for about $300 a day instead of $1,000. And he was there for a while and actually flourished.

This was a man who had nothing in his life and in a sort of – and had led a very wild life. And he said to me at one point, if I hadn’t been shot I would have died. And in a way this whole experience gave him a different kind of life.

Yes, he would have liked to have walked if given the choice. But, he was in a clean, safe place where he had his own room, which he had never had; and his own television set, which he had never had. And they went on outings. They went to ballgames. They went to the mall. I mean, he had a life of sorts.

But even this expense became too much for the hospital and they informed his family one day that they were just going to send him home, which they did. And he is now living in a three-room trailer in Huntsville, Texas. And he has basically no – no life other than the four walls around him.

He can’t afford a backup generator for his ventilator. So, if the ventilator goes out he has to be physically bagged, is what they call it, to keep the ventilator going until they can get the power back on. He – even if he could go outside, which he can’t because he doesn’t have a portable ventilator; but even if he could there’d be no place for him to go because the family doesn’t have a van to take him anywhere in.

So, he sits and he watches Spanish language television in this trailer. And we’ve saved his life. But the question – or Hermann saved his life. But the question is what kind of life does society owe him?

BELKIN: Yes, head in a bed.

BELKIN: A head in a bed. It was sort of the neurosurgeon slang for what kind of life he was going to have. I mean, he can eat. He can talk. I’ve spoken to him on the phone quite a lot. But he can’t move and he can do absolutely nothing for himself.

BELKIN: Actually his English got extremely good in the hospital and is now fluent. I mean, that’s another one of the things that he’s sort of picked up. But you know I call him. They put the phone next to him and we talk. And – and he has his family around taking care of him. He has home nursing and Medicaid is talking about cutting that because of the expense, and is wondering whether he qualifies for it.

BELKIN: It comes up over and over again.

BELKIN: Yes.

BELKIN: They have a committee, speaking of committees. They have a separate committee that deals with patients who don’t have money and what do we do with them. And these are extremely well intentioned people who believe that they should provide the best health care as they can to as many people as they can, given the reality of the fact that they don’t have the money to do it.

And in describing them, they come off like cold, heartless human beings. Because what they do is they sit in a room and they say, well, can we transfer this one to this hospital? Or maybe we can you know send this one home. Or how do we get rid of that one?

And it’s their job and it’s what they have to do. But the fact that there has to be a committee in a hospital that meets every Thursday morning at 9:30 and decides how they can possibly get someone else to take responsibility for these nonpaying patients, I think is a real comment on the state of health care.

BELKIN: A couple of things. First of all, it costs money to turn on the lights and run the air conditioner and you know pay the people downstairs in the cafeteria and I mean overhead. So, a lot of that is built in. And the second thing is, when you have uninsured patients whose bills are not getting paid, then those who have insurance are paying more because somehow the money has to be made up. So, the $59,000 is what the bill was. But the 20 some odd thousand was the actual cost was to Hermann Hospital. And even that is astounding.

BELKIN: Oh, they get health care because by law those hospitals are required to give health care. But where the costs of that are is first of all, if you do not have the money to pay your private doctor, you’re going to wait until you’re good and sick before you go to see the doctor.

You will probably then go to an emergency room because they have to take you. And you will be so sick that you will require a level of care that you never would have required if you had gotten there when you were just a little bit sick and somebody could’ve taken care of you quickly.

So, it’s not that people are not getting emergency level care. They are. If you are in crisis you will get health care. But they are not getting the care that could prevent the crisis. And they may well get so sick that once the crisis hits, there’s nothing that can be done.

BELKIN: Yes. In listening to the health care debate, which I’ve done a lot both as a citizen and a reporter, I think what we’re addressing now is the first level of questions. The idea of – I mean the task force is concentrating very heavily on what mechanism can we use to pay for all the people who need insurance?

I think what we haven’t quite focused on yet as a country, and what I look at in the book, is the idea of if we are going to provide basic health care for everyone then what are we not going to be able to provide for anyone? Because we have simply invented things that we can’t afford to pay for, and if we’re going to give everyone a moderate amount of health care, then there are going to be a lot of people who we can’t give extraordinary care.

BELKIN: Bankrupt may – in the legal sense may be a bit of an exaggeration because I don’t know that they have quite filed yet. But they were in dire financial straits. And they cut back severely. They hacked off a lot of their staff. They closed wings of the hospital for a while. They almost closed their trauma service and their emergency room. And they’ve managed to come back to a stable keel. But they’re still I think like almost every hospital in the country; they certainly don’t consider themselves you know in flush times.

BELKIN: Thank you for having me.