August 30, 2009

Jake and the Specialists

Jake noticed a bump at the top of his thigh. It didn’t hurt, but it did feel warm. He could move it around like a golf ball which had somehow gotten under his skin. But he was 12 and it was right in the fold of his right groin, so he didn’t bring it to his mom’s attention for a couple of days. Then it started to be a little sore, and he let her know.

This was the first time I met Jake. He had scraped his knee about a week before the visit. He had a lot of scraped knees, and this one looked to be healing just fine. He didn’t associate it with the lump. His mother associated unknown lumps with cancer, and was very worried. I told him that I needed to look at his thigh and leg. His mother and I looked at his leg carefully, and there was what I had hoped not to find: a red streak going up the inside of his thigh and disappearing a couple of inches from the lump. I started him on antibiotics immediately.

What he had was lymphangitis, an infection which uses the highways of the body’s lymphatic system, which usually helps us to fight infections, to spread into places distant from the original injury. I sent him home, but gave his mother very specific instructions and cautions.

As I had instructed, she called the next day and said that he didn’t feel well and had a fever. This suggested to me that the infection—which probably started in that simple knee scrape—had started to leak into his bloodstream. I arranged to admit him to the hospital, where he was put on 2 different intravenous antibiotics. With the medicine, he got better quickly. As I chatted with Jake and his mother, they said that he often got skin infections that lasted a long time. He had been on many antibiotics.

They liked me, and I saw him about 6 months later when he needed another hospitalization for intravenous antibiotics to deal with 2 separate yet very large abscesses on his leg. Why did he get 2 at the same time? Culturing the bacteria from these infections showed Salmonella. Salmonella? The same bacterium that often causes food poisoning? I hadn’t heard of it causing skin infections.

The next one was about a year later, and this time he was quite ill, with fever, multiple streaks on the insides of his leg and thigh, and a big red injury on his ankle. Jake had gotten the injury 3 days before he came to see me. The infection progressed quickly, and he felt sick within a day or two. The culture was even more mysterious and grew a couple of different bacterial species. I hadn’t heard of that before, either. I asked for an infectious disease consult. Jake and his mother described the encounter. A medical student or resident came and looked at his streaks and his original wound. She didn’t ask much about the very brief history of this infection. Later that day, the team (the supervising physician, student physicians, and medical students) came into his hospital room. They all stood. No one introduced themselves. The head doctor said that she thought he had sporotrichosis. She recommended stopping the antibiotics immediately, and starting a potent and difficult-to-manage antifungal medication called amphotericin-B, known for its often serious side effects (with a nickname among physicians of ‘amphoterrible’). I was at work when this occurred. I received a phone call from the intern assigned to my patient a couple of hours later. He asked me if I would like to pretreat Jake with diphenhydramine (an antihistamine) before giving him the amphotericin. This sometime reduces the massive release of histamine when the drug is first infused. I was very patient, and suggested to the overworked intern that I wasn’t the right doctor, since he must be talking about another patient. I called the infectious disease department, but the doctor in charge never called me back. I got the story from the mother and the patient. After rushing over to the hospital, I spent several hours documenting in the chart why I didn’t think this was sporotrichosis and why I was not going to stop the antibiotics and start amphotericin.

Sporotrichosis is a relatively uncommon fungal infection most often picked up from the thorns of roses. Generally speaking, it doesn’t make you sick. It is well known for causing lymphangitis, but like many fungal infections, it grows very slowly. It is sometimes diagnosed after a patient has a visible infection for several weeks—sometimes months. It is most common among gardeners, farmers, and those who work with plants. Not 13-year old boys whose schoolyard is completely paved, without a garden at home. When I searched available reports of sporotrichosis, I couldn’t find one in which the patient went from scratched to sick in 3 days. Within a couple of days of intravenous antibiotics, he was better and I sent him home.

Every few months, he’d be back in my office with another serious skin infection. Nearly every time, the bacteria were different. If it wasn’t a single, aggressive species of bacteria, I reasoned, it must be his immune system—though he didn’t get other types of infection. I did some basic blood tests and they were all normal. Slowly, the investigation narrowed the possibilities. Eventually a single diagnosis kept popping to the top of my differential diagnosis list: chronic granulomatous disease. I had never seen a case. As I read more and more on Jake’s behalf, about all kinds of rare immune-deficiency syndromes that result in repeated serious skin infections, it was always the most likely. CGD also causes lung problems, but Jake had never had these.

There’s a test for chronic granulomatous disease. It’s called the Nitro blue tetrazolium test, or NBT test for short. Blood is drawn, immediately put on ice, and then rushed--usually as fast as possible--to the laboratory in order for the test to work. The local hospitals didn’t do it. The big laboratory companies didn’t do it. I needed to send Jake for this test. Finding out if he has this particular type of immune deficiency would change his life. I found the one place within 50 miles that did the test. It was done at the University of California San Francisco Hospital Laboratory. UCSF is one of the premier medical research institutions in the world. If there were a place to send somebody to get an exotic test, I figured, it was an excellent choice. I wasn’t on the staff there, however, and couldn’t simply order the test and get a result. I was told that I had to send Jake for an Immunology consult, and their doctors would order the crucial NBT test.

I've been posting essays about an important new book, Every Patient Tells a Story, about how doctors make a diagnosis. It has prompted me to reconsider some of my most difficult diagnostic challenges. Jake's story is one of these.

I had to fill out several forms and argue with Jake’s insurance company about how essential this test was, and that there wasn’t anywhere else to get it. Even after weeks waiting for approval, the first appointment was about 4 months later. I faxed the specialist at UCSF his history and laboratory findings, and wrote that the key purpose of the visit was the NBT test. His family and I waited for the day to arrive.

His mother called me after leaving the visit at UCSF. They didn’t do the NBT test. They told her that because he had not had lung problems, it could not be CGD, so he didn’t need the test. They offered no other alternative diagnosis. They neither did nor suggested any other tests. They never wrote to me or contacted me in any way.

About 18 months ago, Jake was 21. He still sees me when he’s sick, which isn’t often. He was at a time when he had no health insurance, but he called and said he was sick. He had fallen backwards when playing basketball a couple of days before, and that pain was getting worse. When he came to the office, he said he didn’t feel well, but the only thing that bothered him was some pain at the top of his backside. It looked like this:

I drained nearly a cup of gross material from the huge abscess, but I knew he’d be stuck with an insurmountable debt if I put him in the hospital. So I prescribed a high dose of generic medication and made him come in to see me every day, to keep examining him and draining the abscess, and call every evening. I made him move back in with his mom until he got better. He’s 23 now, doing OK. He’s got something, but I don’t know what. I worry about him.

August 27, 2009

Problems with Medical Ethics: The Elephant

elephant2 Fifteen years ago, I did part of my first pediatric training in the pediatric clinic of St. Raphael’s Hospital in New Haven. It was a nice hospital, well-known at the time for their excellent cardiac care. It was run by the Sisters of Charity of Saint Elizabeth, an amazingly generous order that really practices charity every day by helping those who need it most. Some of the nurses were in the order. The exceptional physician who ran the pediatric clinic was kind and really smart. I still use his home-made guide to pediatric neurological exams. We got along well.

When Reyna came into the clinic, she didn’t look particularly sick, just in pain. She was clutching her abdomen. She saw one of the medical residents, higher in the feeding chain than a lowly medical student like myself. Abdominal pain is one of the most studied of medical symptoms, especially because it’s so common. One by one, the resident and I ruled out some of the things it could be. The girl was 16. We needed a pregnancy test. Oddly, there was some sort of a problem requisitioning one. In fact, the clinic didn’t have one on hand. Her pain got worse, and she was admitted to the hospital. That night, her pain worsened considerably. Blood tests showed no signs of infection. The head of the clinic told us that a pregnancy test wasn’t needed. Within a couple of days, she needed an enormous amount of intravenous morphine. Eventually, if I recall correctly, she was taken by ambulance to Yale-New Haven Hospital for emergency surgery that fixed—and ended—her ectopic pregnancy. Maybe the doctor in charge knew a lot more than me about pediatrics. But I am still affected by my memory of this girls pain. Where was his ethics committee?

Every hospital I’ve ever entered had an office for chaplains. I think this is a good thing. Not meaning to joke about it, my post about lollipops discussed my rationale for using a partly physiological and partly placebo intervention to make a child feel better. I have described my use of hypnosis to help with an anxiety disorder. I think that if a child, if any patient, will feel better after an intervention of some sort, I’d like to use it if it’s safe. For the devout, the counseling of a religious guide can make an important difference in their quality of life. I respect it and recommend it when appropriate.

There is no bigger elephant in the room in which medical ethicists sit around and sip their lattes than religion. The topic is deeply taboo, and I can’t help but wonder if my email address will be unceremoniously ripped from the bioethics listserv database.

At a major national meeting a few years ago, I went to all the sessions given in ethics. In one, a discussion was promised concerning the ethical issues of contraception counseling and prescribing for teenagers. One side brought up the sobering statistics we all know about teen pregnancy and STDs. The other side argued that since condoms only work 95% of the time, that’s a 5% failure rate. Since that’s not acceptable, the only reasonable counseling for physicians to be doing is to tell teens is that abstinence is the only effective form of contraception.

More than a decade ago, I attended Georgetown University’s Intensive Bioethics Course. It was well-organized and I learned a lot. After the first couple of days of lectures, I asked why every lecture on any topic, with no exceptions, included mentioning what The Pope had said on the subject. It was Georgetown, and I was not naive about who ran the place. But I didn’t think it was an insulting question. I really wanted to know why my patients—atheists, Jews, Hindus, and Wiccans—might be affected by this*. Are religious leaders, whether laypeople or divinely chosen, gifted in unraveling of ethical complexities by their career success?

In what way, exactly, does holding a title of religious training qualify a person to sit at the medical ethics table? Are they guided by their training or constrained by it? Do their opinions apply only to their flock? What about the rest of us?

A rigorous principle of contemporary medical ethics involves disclosure. It might be in a grey area that all the objects in your doctor’s office—the post-it notes, the clipboards, the pens, even the magazines—have the name of a drug or drug company on them, but as long as the doctor discloses all the side income, then it’s OK. (They usually don’t disclose unless required to do so. Next time you’re in the doctors office, look around. How many of these ‘gifts’ can you spot?) Do we ever disclose religious affiliation? Should we? Should doctors disclose this? Should the hospital tell you that their ethics committee which has set the policy for pregnancy testing of unmarried teenagers is made up entirely of clergy handpicked by somebody who has a whole different set of values from you? What would happen if they did? Would parents of 16-year-old girls with abdominal pain bring their daughter there for evaluation? Here’s a scary thought: maybe they would prefer to bring them there.

If there is some basic foundation of ethics based on truths we hold to be self-evident, what exactly is added by expertise in dogma?

The case I described above is a real one. It was a horrible experience for me, the resident, and of course the patient. She did fine. It was one of the most unethical events I have ever witnessed.

*I really asked the question. What was I thinking? Like Peter Riegert walking into the Dexter Lake Club in 1978's Animal House, suddenly, the huge auditorium fell completely silent. The lecturer awkwardly dismissed my question without answering it, and I was too humiliated to insist.

August 24, 2009

Paradoxical Pathology

Every Thursday afternoon, I have been going to a diet program. It has helped me lose some weight, and that’s healthy for me. I feel good about it in general, despite my occasional lapses. The program involves weighing and testing every week, and I meet with the doctor. There’s also a nutrition class to help re-educate me, which is also a support group for the dieters. It’s been really, really, hard. I have often felt ravenously hungry and uncomfortable. I do the best I can. Apparently, however, I was the only one who was struggling. Everybody else in the support group would brag how this was the easiest diet they’ve ever tried, that they are never hungry, they love the protein shakes, they don’t miss eating, and they were losing weight like never before. I felt great about my weight loss, but felt like a complete failure after each support group. By the end of the second month of the program, I had lost about 20 pounds. After every Thursday support group meeting, I would drive directly to a local restaurant and have a huge plate of nachos, with guacamole and sour cream.

In my post Squirmy, some detective work and a lot of experience led me to the realization that the cream the parents were using to get rid of the baby’s rash was actually causing the rash it was supposed to treat. As the baby’s rash became more extensive, they put on more cream. As the baby’s skin became more inflamed, even more cream.

(By the way, that true story is a potent example of how valuable a house call can be. If I had not been there in person, to see the baby’s surroundings, to ask the parents to show me the actual container of every single thing that touched the baby’s skin, a different cascade of events would have happened. They would have taken the baby in to see me. I would have had to prescribe a very strong steroid medicine. It probably would not have worked, or not have worked well. Without progress, I would have done a bacterial skin culture and probably started the baby on antibiotics. I might have sent the baby to a dermatologist, who would have intervened even more. When would the parents have mentioned the ‘safe’ ‘natural’ ‘herbal’ skin cream?)

As I thought about the unsupportive support group, I realized that this was a phenomenon that occurs from time to time, and is often extremely difficult to diagnose if the problem is a medical one. I have coined the term Paradoxical Pathology because the resulting problem is contrary to what might be expected.

A couple of years ago, an adorable little girl came to the office with hives. She was itchy almost all over. Her mother said that this started last night, but it was very slight and didn’t bother her too much. Her mother gave her a Benadryl. She didn’t have any trouble sleeping. When she awoke early in the morning, she was covered in hives and was very uncomfortable, so the mother called me right away. I met them in the office about 7:30. By that time, the Benadryl had long worn off and I gave her another dose. Her mother and I reviewed absolutely everything that had gone in or on her body in the previous 48 hours. She hadn’t had new foods, been to new places, worn new clothes, or had any medications. I told both mother and child that I wasn’t sure what caused this, but told them to continue the antihistamine medication and stay as cool as possible.

By itself, this story wasn’t particularly concerning to me. The child was breathing comfortably, without wheezing or coughing, and could speak a whole sentence. She was itchy, but not in any danger. I sent them home.

Hives is the term we use for a medical condition called urticaria. Basically, when the body senses the right trigger—such as a protein from a certain food—it sends out messengers that cause certain cells to release a chemical called histamine. Histamine makes tiny capillary blood vessels leak, which causes swelling and redness. It also is extremely itchy. Naturally, the medicines we use to help with this are anti-histamines. Most of the available ones work pretty well, though some make you sleepy. Because urticaria causes swelling and redness, we can usually counter this directly, with a cool shower. When kids (or grown-ups) are itchy, warmth will worsen the itch and keeping cool will often help it. Nearly half the time, we never figure out what causes hives.

The girl’s mother was frantic when she called that afternoon. So a few hours later, they returned to my office and the child was much worse. She really looked miserable, but now her whole face was puffy, her eyes were red, and the serpentine red marks of the hives had joined into a giant red ocean on her skin. I gave her a shot of steroids in her behind, and made them wait in my office. In 5 minutes she started to feel better, and in 30 minutes most of the redness was gone. She felt great.

I sent them to the lab for allergy testing. In general, there are two types of allergy testing: skin tests and blood tests. In skin testing, each substance being tested is scratched into your skin. Then we see if you get red, itchy, and swollen. The problem with this in children is that in order to test a large number of things, the kid has to be scratched a large number of times. Each scratch can cover just one thing. With a blood test, the child’s blood is sent to a lab where it is exposed to as many possible culprits as I request. It’s still just the one poke. The downside here is that they usually need to draw quite a lot of blood. Sometimes one kind of test will show a reaction but the other kind won’t, which confuses things. The bottom line is that these are just tests. There’s only one lab that gets absolutely accurate results every time—the child herself. I have often had an allergy test say that a patient isn’t allergic to something. But when they eat it, their tongue tingles, their lips swell up and get itchy, and they say they don’t feel right in their throat. Whatever the lab said just doesn’t matter. The only thing that matters is what’s going on in my patient.

Even so, the lab test said (and her mom confirmed by experience) that she probably wasn’t allergic to wheat, corn, milk, eggs, nuts, peanuts, seafood, shellfish, chocolate, melon, strawberries, blueberries, kiwi, tomatoes, cocoanut, banana, soybeans, cheddar cheese, 3 different varieties of mold, 2 different species of dust mite, cats, dogs, 12 different local varieties of pollen, 4 different grasses, and chicken feathers. I sent her to an allergist. There, he repeated many of the blood tests with skin tests and got the same result, with a much less happy little girl.

They returned to my office, and her mother and I started over. This time, I read every ingredient on every label. I sent the poor girl back to the lab with a long list of exotic tests. I even tested for some of the ingredients in the diphenhydramine (Benadryl) that she had been taking. She wasn’t allergic to any of the ingredients of anything she had eaten.

She was, however, highly allergic to Red Dye #40, a food coloring used to make the coating of her pink pills pink. Every time she took one to help with her itching (sometimes at my instruction), she would get worse.

As I think about it more, I think there are many cases of paradoxical pathology. The support group story applies to a lot of social situations. For people with anxiety, for example, forcing them into anxiety-provoking situations often just makes them more anxious.

Do you have a story of being given a treatment for some problem that ended up causing that very problem? Please share it as a comment.

Epilogue: I stopped going to the support group. I felt better and ate better.

August 21, 2009

Every Patient Tells a Story, Part 3

What, exactly, is a physician’s ethical obligation to a patient? Though not discussed in the book, Every Patient Tells a Story, the question lingers in my mind after a careful reading.

A man with chest pain is seen in the Emergency Room. They do all the appropriate tests to rule out a heart attack. They send him home. He told them about the tingling in his fingers, but they didn’t really consider it. Is the definition of the ER physician’s job to diagnose the patient? Or is it to rule out diagnoses? Many ER docs, I think, would like to diagnose a patient if possible. But if not, their basic responsibility is to rule out diagnoses that must be treated immediately or conditions for which the patient must be admitted. If you’re not acute, and don’t need to be admitted, you can go home. The ultimate decision node in the the ER decision tree is whether or not to send home. It’s not about what the patient has, it’s about what the patient doesn’t have.

Every Patient Tells a Story is the most important book I’ve read in years. Dr. Lisa Sanders discusses, through riveting case stories and her own accumulated insight, how diagnoses are made. Her own considerable experience in documenting case reports of unusual and difficult diagnoses, from years of writing the Diagnosis column in the New York Times Magazine, has left her in a unique position to see the diagnostic process in both minute detail and in overarching trends.

Again and again in the book, difficult and sometimes obscure diagnoses are presented as exciting detective stories. The stories wouldn’t have made it into the book, I suspect, if they were obvious or straightforward. Often, the right diagnosis is missed again and again, by generalists and by specialists. I’ll ask again, what is the obligation of the physician? Are there limits?

I like to think that I’m like the doctors described in some of these stories. When faced with a seriously ill patient without a working diagnosis, they are tenacious, nearly obsessed. They call their doctor friends, they contact experts they don’t know personally, and they go to the library.

A little girl I take care of was brought in by her mother. She had a fever for a couple of days, but wasn’t complaining of any pain or other symptoms. Her mother was particularly concerned about a tick she removed from the girl’s abdomen about a week before. They were at a lake house, and the 3-year-old was swimming naked. The tick was tiny, not engorged, and could not have been attached for more than a couple of hours. Mom removed the tiny thing with her fingernail. A day or two later, there was about 1 cm (less than 1/2 inch) of redness around a tiny black spot where the tick was. The redness went away in another couple of days, and until the fever, mother wasn’t concerned. Having gone to medical school in Connecticut, I feel pretty secure in my basic knowledge about Lyme disease (named for the town of Lyme, Connecticut).

Here’s why I reassured the mother that this was unlikely to be Lyme disease. Generally, transmission of the disease requires the tick to be attached for at least 24 hours. The classic rash of Lyme disease, erythema migrans, is one I’ve seen several times. It has the distinctive look of an archery target, and 70-80% of people who have Lyme get the rash. Here in California, the incidence of Lyme disease is about 2 cases per million people (some other examples: Wisconsin 324 per million, Connecticut 873 per million). So it’s also just pretty unlikely. So I reassured her that unless the child had other symptoms, I wouldn’t recommend that we take her to the lab for a test for Lyme disease. But I said I’d look up some of the other possibilities to see if she needs to be worried about other diseases. It wasn’t a lot of research, not nearly as much as I have had to do for some diagnoses, nor as much as was done by some of the doctors working on the mystery diagnoses in Every Patient Tells a Story.

But I know this much for sure: nobody pays me for that time. Nobody pays me to pay another professional I might call for advice, just as nobody pays me for the time I spend on the phone coaching other doctors who call me for advice about their own mystery cases. I was impressed with the tales of caring and motivated doctors who clearly spent time in medical libraries and online and on the phone in order to make the difficult diagnoses in this great book. I know that they weren’t paid for that time. Is it their ethical obligation to the patient to do this work? Is the obligation of the physician ‘best efforts’ or, as in most malpractice cases, ‘at the standard of care?’ Or is the obligation to ‘do what it takes to get it right?’

I often point out that the current model under which we provide medical care, in which doctors are paid per visit is not always compatible with optimal care. But now I have a new concern. If doctors are paid for a visit—and indeed, patient-related work that isn’t done face-to-face with the patient is usually not paid—and if working for free is not ethical, are doctors obligated to work for free, on their own time, until they get a diagnosis for the patient? Presumably, the patient benefits. But economically speaking, the physician is effectively donating her services not to the patient but to the payer, the insurance company. It’s the insurer which gets the economic benefit of hours of additional physician work with no incremental cost to them. It is the insurer who has the most incentive to keep paying the doctors the way they do, to keep them churning through patient visits as fast as possible.

What is the ‘standard of care’ in the stories that are described in this book? (Or in the case reports described in her fascinating column, Diagnosis? It’s not getting the diagnosis right. If it were, then there would be a long trail of physicians who didn’t meet the standard in these cases.

Does the doctor have an ethical imperative to listen to the patient? It’s certainly appropriate professional behavior to be polite, but to listen?

If you’re the patient with the mystery diagnosis, however, what do you do? Who do you see? Some primary care doctors shunt difficult diagnoses automatically to specialists, just to save time. Sometimes, they send these patients to me.

As a primary care physician, I see an additional problem. When I have a real mystery, I do sometimes send my patients to specialists with the assumption that their specialized training and experience will give them insight I don’t have. And it frustrates me and my patients when, as so often happens, I am told that while they don’t know what’s wrong with my patient, they are sure the problem isn’t in their department. [I guess that’s why they make so much more money than I do.] What is their ethical (not contractual) obligation?

Is the job of the specialist to rule things out? Who gets to rule things in? And let's be blunt about it--it's easier and quicker to cross things off a list of possible diagnoses than it is to think of new things to add to a list. Whose job is that?

August 19, 2009

Every Patient Tells a Story, Part 2

In this brilliant new book by Dr. Lisa Sanders, Every Patient Tells a Story, the key success factors that make diagnoses appear for some and stay hidden from others are pointed out in compelling clarity.

She's just the right person to do this, too. Writing her column in the New York Times Magazine, Diagnosis, she must see hundreds more cases that she can possibly write about. Each of the cases are intricate, and even for relatively common conditions the diagnosis often hinges on one key piece of information—sometimes a few pieces. And very often, the clues are there in the patient's own words. Sure, a specific test might confirm it, or rule out some alternatives, but in many of these mystery cases, the patient's story is indeed the single most important factor.

This has led her to important insights into the method of diagnosis, and the impediments to teaching it. She cites evidence that key physical exam skills continue to weaken among recent trainees. I recall hearing that when I was in medical school 15 years ago, and an older colleague confided that he had heard it 35 years ago also. (I speculate that the optimal exam skills are probably found in places where there is not enough technology to do the work for the physician, but there is just enough to validate the doctors findings. Maybe this should be called the second world, somewhere between First and Third.)

And most importantly, she documents the failures of listening skills among doctors. Frequent interruptions, closed-ended questions, and premature closure of the differential diagnosis are cited by example and in research studies. Her thorough approach assesses the impact of artificial intelligence decision models and innovations in hands-on medical education. As I pointed out in my previous essay[link to epts1] on this great book, however, the current economic model of physician-patient interaction is likely to put irresistible pressure on the examining physician to keep visits short, questions closed, and interruptions as frequent as ever.

Every Patient Tells a Story is about doctors. How they think, how they approach patients, problems, and data. It's particularly brave of her not to sugar-coat the stories of several doctors missing an important diagnosis because they didn't do the full job of examination and history-taking. She never says, but it's clear by example, that some doctors are just more motivated and tenacious than others about getting to the bottom of a patient's problem. Dr. Sanders does a superb job of pointing out what some did right.

But there's another book here, too. It's the unwritten shadow book, this same book, these same stories, through the looking glass. Sanders gives the reader insight into what is usually invisible to them—the intensely caring physician who's calling all her colleagues and spending time in the library for the benefit of a patient. The mirror book would give the physicians insight into what Sanders shows to be completely invisible to them: what the impact of a rushed or absent physical exam means to the patient, how the frequent interruptions feel, the frustration of not being able to tell the story that every patient tells.

Illness often affects us in unanticipated ways. For a child, the new feeling of feeling bad is usually unfamiliar and frightening. Fortunately, the relationship I have with most of my patients is helpful under these circumstances. Kids are usually not afraid of me. Many awaken and tell their parents that they need to see Dr. Wolffe, just because they think I'll make them feel better. I'm not interjecting this to brag—I think it gets to an important part of the patient-side of Every Patient Tells a Story. Usually, when I see a sick child, I don't start even by talking to the parent in the exam room. I am totally focused on the child. I always start by asking them if anything hurts. They generally will tell me, often to the surprise of the parent. I ask them to tell me how it happened, what it feels like, and when it started (this last is often the least dependable of the questions, and sometimes results in a 3-year-old telling me that her ear has been hurting for 5 years, while holding up 2 fingers). Only rarely does a parent not interrupt. This is done, I know, with the best of intentions, to help give me the most accurate information on which to base my professional assessment. They stop when I hold up my hand and indicate that I want to listen to the child, but they will get their turn soon.

Here's why I do it. It makes the child feel better. To them, their symptoms are not just uncomfortable. The symptoms are out of their control, and appear to trigger actions by their parents that are obviously concerning and also out of their control. This all can be very anxiety-provoking. I purposefully give them this opportunity to voice these anxieties in a safe place, where they can say it their way and I will listen to them and respect them.

One of my patients just started preschool for the first time. Every morning before he was to leave, he complained of a stomach ache.

Just like adults and headaches, there are stomach aches of all different kinds and intensities. It didn't take a particularly intense interrogation to figure out that the child wasn't having any other gastrointestinal symptoms. The pain started on the first day of preschool, when mommy was leaving for work. A couple of times she called in sick to stay with him. On those days, his abdominal pain vanished as soon as she said she'd stay. I gave the mother some ideas of behavioral things to try to make the transition easier, and told her to call and let me know how it was going. Realistically, no exam was going to help me make a diagnosis in this happy active boy who was running and jumping around in my office. But I knew that the exam could have a powerful effect on the patient. I had listened to him tell his story. But he had to know that I would understand his pain when I examined him. Carefully, without joking, I listened to his chest and stomach. I looked in his ears and mouth, felt his neck. And last, I slowly examined his abdomen. I had a serious expression on my face, as if searching for something. Finally, I spoke to his mother directly, with him in the room. She's a school principal—but I used mostly 1-syllable words in my most grown-up voice and cadence. 'I can see what the problem was,' I said thoughtfully. 'I'm sorry he was so sick and his tummy hurt so much. I think it's all better now and it won't hurt any more.'

OK, maybe the analogy to this use of the placebo effect isn't perfect. But I hear it from adults all the time. 'The doctor saw me but he didn't even examine me.' I hear it from my mother.

I believe there is something important in gentle physical touch. During a physical examination, the touch isn't as a friend, and sometimes elicits pain. But the touch of the doctor's hands is more than a one-way data cable from patient to doctor, providing resources to the diagnostic algorithm. The patient is getting information, too. The patient's information is not examined in Every Patient Tells a Story. I suspect some of the information is about the caring of the physician. But the deliberation of the touch, how unhurried it is, how focused it is on finding out just where it hurts are all things that I suspect every patient perceives. And patients value this as well.

This is more than a placebo effect. Obviously, when we don't feel well, it's good to have somebody available who's a sympathetic and patient listener, a good observer, with a gentle and caring touch. That would make anybody feel better. But I think there's an important feedback loop here that has a real impact on the Story that Every Patient Tells. It's the rapport, the unrushed atmosphere in the exam room, the openness of the examining physician that elicits that story. And hearing that story--listening to that story--can sometimes determine if the patient lives or dies.

August 17, 2009

Every Patient Tells a Story

You just don’t feel right. Maybe you’re a little more tired than usual. Your muscles themselves seem weak. That’s odd, since you lift weights nearly every day. Maybe you’re just pushing yourself too hard. Over a few months, you notice that your handwriting is hard to read, and it takes both hands to lift a cup of coffee. In the Emergency Room, they said that you weren’t having a heart attack and sent you home. Then, gradually, your fingers seem less sensitive….

In this remarkable book, Dr. Lisa Sanders opens a new and original window into the diagnostic process. As patients, we’ve all had a sore throat or sprained ankle, and the doctor’s work seemed obvious: do a test, get an x-ray, write a prescription. But sometimes we don’t have a straightforward collection of complaints that we could have figured out by ourselves. Is the headache I had a few days ago somehow connected to my cough today? How do doctors make sense of the information we give them?

She’s got great material. As the long-time author of the Diagnosis column in the New York Times Magazine, she has been collecting the stories of diagnostic hits and misses for years. She uses her network of medical contacts to find the valuable pearls of seeing patterns in what looks like chaos. Her column’s focus on diagnoses that aren’t obvious always makes for compelling reading that can’t be put down.

But there’s a lot more in this book than a compilation of some of her columns. In her Diagnosis writing, she seems like an invisible narrator, allowing us to observe a medical detective story unfold before our eyes.

Every Patient Tells a Story has plenty of those medical mysteries. But Dr. Sanders has shared not just the events, but her own insight into the process. She’s completely candid about missed diagnoses, tests that should have been done, questions that should have been asked—including instances when she was the physician who might have done better. She does not hesitate to point out the dangers of skimping on the physical examination of every patient, and has convincingly written about changes that need to be done to change medical education in a way that brings physicians back to basic exam skills and diagnostic thinking.

The book’s focus is not the detective stories, though they are fabulously written and fascinating to read. It is the process of discovery that clearly interests her. Why do some doctors miss something again and again, even though it’s right in front of them? Why do others see what’s hidden? How can we teach doctors to see the forest for the trees? Computer technology would seem to lend itself well to the understanding and improvement of this kind of analytical task, in which diverse bits of information are processed into a coherent result. She examines the development of artificial intelligence models for making a medical diagnosis, with data to illustrate their weaknesses and strengths. (They’re not quite here yet.)

Dr. Sanders makes her strongest arguments when pointing out a major weakness in physician behavior. The title, Every Patient Tells a Story, says exactly what she means. Doctors need to listen to what the patient has to say. Again and again, the trail of clues—even to the most obscure and unlikely diagnosis—starts there.

This is the most interesting book I have read in years. I couldn’t put it down. The narrative stories are fascinating, and her insight is right on target. Everyone who’s ever been a patient, and certainly every doctor, should read it.

The book moved me in many ways, so this won’t be the only blog post about it. If there’s a unifying theme to the book, it’s the importance of doctors listening to what patients say. Yes, she points out at length how many doctors don’t do or don’t respect the physical exam. She describes interesting cases in which basic observation would have provided a crucial diagnostic clue, yet the doctor didn’t observe—or maybe didn’t see—what was right in front of her. I don’t know if this was the work of her editor, but she does a very good job of staying ‘on topic.’ That’s a reasonable thing, and makes the book focused and coherent reading.

Dr. Sanders gives convincing proof that doctors are skimping on the physical exam of their patients, and doing a particularly poor job listening to patients. Many of the stories she recounts hinge on a key physical observation, or an event the patient described but didn’t seem important at first. She describes some new educational methods to improve these weaknesses. For example, doctors in training are now required to pass a practical exam on interacting with and examining a patient.

That’s a great idea, but I’m very pessimistic about its long-term impact. Here’s a statistic I’d love to see that she did not mention in the book: for a perfect score in this practical patient exam test, how much time would be necessary? Even if it wasn’t done by a medical student—I want to see the head of a patient-care department do it. Even if that department chairman had the notes in her hand (the teacher’s edition of what tasks had to be done in that exam to have a perfect score), how long would it take? I know nothing about this effort, and I applaud it. But when I read about it in the book, I started to think: introduce yourself, wash your hands thoroughly, find a seat and sit; describe what you’re going to do, ask some basic demographic questions. Most important in the interview: ask open-ended questions, listen to the patient’s complete answer. I figured that before even the most organized and experienced interviewer got to the physical exam, quite a while would have gone by. 15 minutes? 30? More?

Many medical practices schedule patient visits every 20 minutes. Some places I know are every 10 minutes.

I discussed this in my series of posts called Slow Medicine. I’ll add, after reading this book, that if the factory model of medical care is, as Dr. Sanders shows, likely to result in missed diagnoses and frustrated patients, it’s much, much more of a problem with children.

In pediatrics, the patients often don’t get to tell their story. I believe that every child does tell a story about themselves. The only way to hear it is to take the time to establish some level of rapport with the child. With many children, and with children the doctor is meeting for the first time, that’s just not possible in 5 or 10 minutes.

Until doctors stop getting paid per visit, the irresistible pressure to see more patients and spend less time with each one will force those laudable lessons of medical school into the dusty trash bin filled with good ideas.

More to come on this amazing book.

August 14, 2009

Problems with Medical Ethics: Holistic Ethics

It’s been established that doctors who own their own x-ray machines do a lot more x-rays on their patients than doctors who don’t own their own machines. Some of this, no doubt, is because it’s so convenient, and the doctor could get results right away. But part of it is also the fact that the doctor will earn money not just from the visit but also from the x-ray. Knowing this, I recently changed dentists. dental x-ray machine

I had a good dentist. But it really bugged me that every time I was there, he was selling me on…whitening products, tooth grinding products, and x-rays. That was the final straw. He told me that I needed a full set of x-rays every year. I had no dental insurance, and would be paying in cash. I asked if it were really necessary, and he told me it was essential. I asked him if this had teeth2 ever been studied, and if he could send over to my office any papers about the difference in outcomes between those people who went to the dentist and had x-rays and those who went to the dentist and didn’t have annual x-rays. He said he didn’t have a paper like that. So I got a new dentist, who is very nice. She examined me and told me that a crown was worn on one side. She said, “We should replace that.” It would cost $1200. I chose to wait until something went wrong with it.

Why does the dental profession think it’s OK for every dentist to have their own x-ray machines? Is their conflict-of-interest somehow less powerful than a medical doctor’s? Are dentists immune from the influences of conflict-of-interest?

Every now and then, I am sent a flyer from a company looking to produce for me bottles of vitamins and ‘supplements’ with my name on them. The idea would be that I’d sell the products in my office, telling patients that they need these products, and that the products are not available elsewhere. Obviously, they would be a lot more expensive than similar (maybe identical or superior) products you could get at the supermarket. I would give everyone the same advice: be cautious about the so-called professional—wait, anybody—who says you need to buy something you can only get from them.

Of course this applies to physicians as well. Do you really need that follow up visit if you are fully recovered? Do you really need that follow up x-ray? Do you really need to return for all 16 visits? (I don’t want to seem too cavalier about this. It’s tempting to think we don’t need follow up care when we’re feeling OK. But that’s a serious mistake for many problems, especially the ones we might not feel, like diabetes or high blood pressure. Sometimes, even when the baby looks great, I really need to weigh and examine the baby every day.)

The never-mentioned elephant in the room—one of several—will get me in troubleelephant1 here. [Maybe by burying it in the middle of this 4th post on ethics will I prevent the storm of backlash I expect.] Alternative Medicine.

I want to keep this to a reasonable length, and not focus on safety or efficacy of alternative treatments. I reserve the right to rant at another time. The topic is ethics.

A PubMed search of ethics has 139,072 references. A search of ethics AND chiropractic has 63. How come when my patients go to the acupuncturist, for example, they are told they need another visit, and another visit and another? How many visits does it take? Has this been studied? How come they are so often sold on various supplements and herbal remedies only available there in the practitioner’s office? Is it ethical to do business that way? Is it ethical to prescribe products which are untested? Do they need to disclose that the products have not been tested? Do they have to disclose that what’s on the label may not include stuff that’s in the product? Do the practitioners need to obtain some sort of informed consent for their procedures or for these untested products? Is it ethical for these other practitioners to raise doubts about the treatment plan I proposed? Is it ethical for me to raise doubts about the alternative treatments and medications my patient is taking? In Squirmy, I think it was the pharmacist at the ‘natural’ pharmacy who advised the parents to put calendula cream on their baby. Exactly which health care provider is ethically restricted in what they can say and which provider isn’t?

In many places, there are laws and liability precedents that restrict what licensed physicians do. But surely the ethics of what is done with patients doesn’t vary with the initials after your name. I don’t think that my patients should get cheated or carelessly harmed by a doctor. Or a chiropractor, ayurvedic practitioner, naturopath or guru with a fleet of Rolls-Royces.

In this series of posts, I complain that there’s too much attention placed on really unusual medical situations and not enough on common situations. But the field has developed a cadre of smart, perceptive thinkers who are very quick to understand some of the problem issues in patient care. It would be great if they looked at patient care from a holistic point of view, not just the patient-physician interface. Real-world medical decisions, faced by patients every day, touch on all aspects of their care. Their personal relationships, their supplemental caregivers, their medications and supplements, financial situation and alternative practitioners all influence the patient’s wellness. It would be great if our field of medical ethics could take its eye away from the telescope and see the whole Milky Way.

milky way candy

There is still an ongoing debate about whether physicians can refuse to provide certain services depending on their own consciences. One side believes that doctors shouldn’t reasonably be forced to give a patient advice they don’t believe in—like using birth control, for example. The other side thinks that the patient won’t know what the doctor believes, and as their medical expert who is supposed to have their best interest at heart, so the doctor should present all available options, including choices they wouldn’t make personally, such as abortion. In 2005, there was an editorial in the New England Journal of Medicine discussing the case of pharmacists who refused to fill prescriptions for pills that could terminate a pregnancy. My letter in response was published, but here’s what I said, and I believe it more today, 4 years later:

To the Editor: It is curious that pharmacists might refuse to fill a prescription. Must all the prescriptions they fill result from morally acceptable diagnoses? The Health Insurance Portability and Accountability Act of 1996 (HIPAA) does not allow breaches in confidentiality about diagnoses and therapies so that strangers can make individual judgments about whether to cooperate in treating a patient. A prescription may be written for a diagnosis of which the pharmacist is unaware (e.g., oral contraceptives to treat ovarian dysfunction). There are many other people involved in every patient's care. What if receptionists refused to make an appointment or refused to give the physician a telephone message because they did not approve of something? The pharmacist might refuse to fill a prescription, the cashier might refuse to sell the prescribed item, or the driver of the distributor's delivery truck might refuse to transport it. Why is the pharmacist's moral judgment dominant? Ethically, there should be open disclosure that some prescribed drugs, products, or services will not be provided. Disclosure is also ethically required for diagnoses, symptoms, or clinical issues about which the pharmacist, health care worker, or others in the chain of health care delivery have such feelings that their cooperation in the care of patients is compromised. Will this trend inevitably lead to a balkanization of medicine, whereby patients will go only to doctors of their own sect, who prescribe only for pharmacists of that sect, and refer only to specialists of that sect? Shouldn't patients be warned?

Wolffe Nadoolman, M.D., M.B.A.

August 13, 2009

The State of the Blog

This blog has taken on a life of its own.

The internet is filled with repeated themes. It’s nice to have a limitless storehouse of information. But there’s often no way to tell what’s good quality information from everything else. So to save myself time when looking stuff up regarding kids and health, I took a Google search engine and limited the web sources to just the specific sites I liked most and trusted most. It worked so well that I decided to share it.

Let’s say there’s a website that claims to have proved that UFOs are alien spaceships. Another website refers to this as evidence. another website links with that website as evidence. The original website says that this last website has the evidence that validates their claim. The problem with limitless and uncontrolled information is that you can probably find people who agree with your ideas and can cite a website to back them up. So you cite them as a reference, and it’s sometimes awfully hard to figure out where the start of the idea really was.

When I started the blog, I was advised to keep it easy by digesting other available information sources, such as medical news or new discoveries, or local information. Then it would be a service to readers to have this predigested material for a quick overview.

I was also advised to keep it short.

The length of the posts clearly requires a commitment both on my part and especially on the part of the reader. I tried being more succinct, but it didn’t work for me and felt forced. It’s not the way I talk or the way I think. In the posts which have case stories, it’s important to convey how the case unfolded, and this can’t easily be done in brief. (The very best example of compelling case description is a column in the New York Times Magazine, called Diagnosis. It takes you from a simple symptom to an exotic diagnosis through great detective work. The author of this column just published a book about this process, which I will review soon.)

I didn’t want to be yet another source of predigested medical information. I just wasn’t interested in doing this generic task. instead, for better or worse, the material on the blog is original and can’t be found elsewhere. For that, there are links.

It certainly takes up a lot more time that I had anticipated. I’m hoping I can continue this pace!

Some internet sources say that the average time a websurfer spends on a blog is around 30-60 seconds. Others say it’s up to a minute or two. Here’s my visitors:

blog visit time 8-11-09

I know the 25% of visitors who spend an hour or more aren’t just leaving their computers on. They visit several different pages on the site.

This is a map of where my readers are from:

blog map 8-11-09.jpg

Other places pop up from time to time, such as Peru, Argentina, New Zealand, Kazakhstan.

I receive a lot of comments along the following lines:

My child had this exact same problem and her doctor didn’t know what to do. Finally we started using Nature’s Special brand of nutritional supplement and now he’s completely cured. Thank goodness we discovered the website and the life-sustaining products they sell.

I wasn’t sure that I wanted to put any advertising on the site, but obviously a lot of others wanted to use the blog for their own advertising. I filter these out.

I would like to get more comments from people who themselves have had some similar experiences, or maybe their children have.

August 10, 2009

The Slobbering Grandmother

I don’t like taking off my shoes when I go to someone’s house. Hey, haven’t they heard of vacuum cleaners? But I’m the visitor, and it’s their house, after all. So even though I don’t like to do it, and they don’t have to do it at my house, I take my shoes off. It’s polite, as a guest, to respect my hosts.

Even with 9 months to think about it, even if you read all the available books about how to prepare, you’re never prepared when the baby arrives. Suddenly, you’re a parent.
As I said in An Aunt Who Shares, our modern style of family unit often leaves new parents, and new mothers in particular, very isolated. There is a natural tendency with bright independent young adults not to ask for help. I think this is a mistake, and tell them so. I encourage getting those grandmothers and other close relatives to watch the baby for short periods that allow the new mother to get some precious sleep. An absolutely essential part of being a good parent is being available to your child. With a newborn, you need to look out for your own healthy nutrition and exercise, and more than anything, you need sleep. The baby needs the most alert, healthiest mother possible.

So part of the journey into the ‘parent’ part of your life is taking care of yourself so that you’re there to take care of the baby. It’s one of the key stepping stones of adulthood.
In this spirit, I had been seeing one of my new babies nearly every day. The mother, Melissa, was struggling. She was indeed isolated, by the circumstance of having moved here from far away. Her husband was as supportive as he could be, but I suspected that he had an extensive list of pre-birth expectations that needed immediate reappraisal. When they were in the office, for example, he seemed to be impatient with any cry from the baby. I got the feeling that he thought that if the baby was crying, the mother was doing something wrong. Still, he let her do 99% of the baby care. Newborn care looks easier from the outside. Melissa was, of course, sleep deprived and emotionally fragile. I knew she was getting depressed.

But the reason for her call late at night, when the baby was about a week old, was a surprise. “I need you to answer a medical question. Is it safe for the baby if someone who’s had herpes like a hundred times is kissing him on the mouth and slobbering on him?" But I heard something else in her voice. I asked why she’s worried about this.

Her husband’s mother had come to visit. She insisted on holding the baby and kissing the baby on the mouth, kissing his eyelids. She did, in fact, have a long history of eruptions on her lips. Melissa told me that she had politely asked her mother-in-law not to do that, since it made her uncomfortable. The activity didn’t stop. The next day she asked again, and this triggered a cascade of discussion which included Melissa asking the baby’s father to ask his mother to stop doing this. The mother-in-law, in a spirit of helpfulness no doubt, explained that she raised 3 children of her own and knows much more about babies than Melissa. Her son said that he didn’t want to get in the middle of anything. Melissa called me and asked ‘a medical question.’

In general, I don’t like getting in the middle of anything either. But I told Melissa that my answer had 2 parts. First, the recurring cold sores that her mother-in-law gets on her lip are certainly herpes. It’s from a virus she caught years ago, that doesn’t go away but remains dormant in the nerve cells of her spinal cord and reappears from time to time with illness or sometimes stress. It’s definitely contagious when there’s an eruption, but it is probably somewhat contagious just before or just after an eruption. So since her mother-in-law isn’t having an outbreak right now, chances are very good that the baby will be fine. I pointed out for future reference that during an outbreak, I’d be reluctant even to let the person hold the baby, since if they touch the annoying sore, the virus can be spread on the hands. I apologized for not being able to tell her categorically that this woman shouldn’t be handling the baby. Melissa sounded disappointed.

I reminded her that there was a second part to my answer. This was her baby, I reminded her. This lady had her 3 kids, just as she said, but she was not this baby’s mother, and has no say in how to raise it, feed it, hold it, or choose who gets to do what with it. It was hers. I told her that I, too, cringed when she described this woman kissing the baby’s mouth and eyes. I was glad the grandmother felt affection for the baby, but when asked to stop, there could only be one acceptable response, and that was to respect Melissa’s wishes.

It’s OK with me if, in the car on the way home, the mother-in-law complains bitterly to whomever she’s with about the lousy job her son’s wife is doing with her baby. It’s OK if she calls her friends and tells them how her son married someone so unworthy of him. Where it crosses the line is telling her son or daughter-in-law these opinions, and it’s way over the line when she goes ahead and does what she thinks is best despite the wishes of the parent.

I have posted in An Aunt Who Shares about how much we might have lost when our society moved away from the multigenerational household. These have been the standard for generations. The expression It takes a village to raise a child is an African aphorism (Nigerian Igbo culture) that confirms the naturalness of having more than a single caregiver.

But again and again I am the unlucky witness to conflict between mother and grandmother when a new baby arrives. As hard as the transition from adult to mother might be, there is a transition from mother to grandmother that is clearly a difficult one for many. The bookstore doesn’t have a big section of parenting books for grandmothers. If I wrote one, it would be short, so I’ll outline it here.
  • Share your love, your time, your money
  • Babysit
  • Offer advice when asked
  • Indulge the child much more than the parents ever should or would; much more than you did with your children
  • Keep visits short
  • Mind your own business

You are not the parent. You had your chance, and for better or worse, it’s over. Move on.
Your daughters and sons still need you a lot. But it’s their life now, and their family. If you want to keep your family together, respect theirs. The reward will be the calls and invitations to visit that you really want.

Epilogue: Melissa appreciated my support. I asked her permission to do a blog post about it, and she said it was OK. Things are tense with all of the husband’s side of the family.

August 7, 2009

Problems with Medical Ethics: Man in the Mirror

In Perimortal Obsession, I noted that a great deal of the work in medical ethics is focused on unusual near-death situations that, though interesting, have limited relevance to the daily practice of medicine. In my last post about the problems in medical ethics, Recruiting, I tried to point out that experts in ethics who were based at big and important institutions and medical schools really have no contact with the practice of medicine as I and tens of thousands of my primary-care colleagues know it. So it’s understandable that they are either unaware of the issues that face me and my patients or maybe they don’t see the importance.

The work that is currently being done in the field of medical ethics is important and interesting. At some point in each of our lives, it may become sadly crucial as we are forced to make a wrenching decision about a baby, a parent, a loved one…or ourselves.

In this series of posts, a theme that’s been repeated is the field's apparent lack of interest in the ethics of primary care. It’s curious to me that this disparity of focus has somehow developed.

But not nearly as curious as the glaring lack of self-reflection amongst those who have made this their work. Who gets to be on an ethics committee? How are members chosen? Do the people who teach ethics to doctors actually see patients every day?

The tasks of ethics committees in academic environments, besides working on perimortal crises, also often involve the important work of protecting patients who are subjects of medical research. (Disclosure: I sit on an IRB, an Institutional Review Board, whose task is to review and approve protocols for medical research.)

Experts in medical ethics end up knowing quite a lot about new technologies and treatments, end-of-life care, and principles of patient rights. My experience in the work world suggests that people don’t get very far criticizing the company they work for, the industry they’re in, their boss or the top executives. I think this holds true for professional ethicists at big nonprofits also, such as hospitals or medical schools.

For the record, people who go into the field of medical ethics don’t do it for the money. There’s no pharmaceutical industry backing their work, and they don’t earn more by doing more of some kind of procedure. Indeed, some already find themselves walking on eggshells because they gently point out some of the questionable priorities of work being done at their own institutions.

That’s not good enough.

It's the money, stupid.

In one of my Southern California interviews for medical school, I was told to meet a faculty member at his medical office. A prominent kidney specialist (nephrologist), he had a big, busy office. I was greeted warmly by the receptionist, and didn’t have to wait long to see him. He was just a few years older than me, but was in much better shape. He asked what I thought of the stock market. As politely as I could—I was trying to get in, after all—I told him that I wasn’t really involved in the stock market and was really focused on medical school. He seemed a little frustrated kidney beans when I left about 40 minutes later. He interrogated me nonstop for my opinion of sector rotation, Elliott Wave theory, and insider stock tips. He asked if I knew anything about options. As it happened, I knew a lot about options, and like a fool, I told him that I did know something about them. Politely, I felt him out about his understanding of Arrow-Debreu Theory and the Cox-Ross-Rubinstein model. Every time I tried to bring the conversation back to why I wanted to go to medical school, he steered the other way. In the packed parking lot of his office was a meticulously polished candy-apple-red Ferrari with the license plate ‘beans.’ Maybe I can’t complain too much: I was admitted.

A PubMed search of the word ethics turned up 139,072 published references in medical journals. A search of ethics AND money turned up just 536.

It’s no secret among the general public what the main conflict-of-interest is for many doctors, especially those who use the latest technology, do the most procedures, and, yes, make the most money. So why does it seem like a mystery to those in the ethics field? Nearly 30 years ago, business ethics were an integral part of my business school curriculum. These days it’s part of nearly every course in most top business schools. The business ethics of medical practice were never mentioned, even in passing, in any of my years of medical training. The money of medicine has such a palpable taint that doctors never bring it up with their patients--the billing office does that for them. It is so taboo that it is never discussed in medical school, and those who want to talk about it are openly shunned. Yet the faculty with clout in major institutions are often the ones who bring in the most revenue for their struggling hospitals and clinics.

But though I may have been a reformed, life-changing convert, I went through training with my eyes open and—when I had enough sleep for rational thought—my mouth shut. My years and years of training and experience in finance made some things shocking to me.

It is generally true that doctors who do things to you make a lot more—way, way more—money than doctors who do things for you. In fact, much of the payment system for doctors is largely controlled by procedure-type doctors. Why is this? Do they work harder? Are they smarter? Do they help you more?

In medical school, somehow we got the impression that psychiatrists were among the lower paid. After all, they got paid by the hour, not per procedure. But we were never told that what your psychiatrist probably does with you is heavily influenced by lectures and reviews given by a very small group of department heads of psychiatry departments at major medical schools. Members of this elite club might earn a pretty good, even enviable, living from their faculty positions. But they could earn a million dollars a year from ‘consulting’ and guest lecturing and speaking at educational seminars. Even for Wall Street, that’s real money. Is it ethical for them to take this money from pharmaceutical companies? How about neglecting to disclose this to their institutions (officially, their employers)? Should they have to disclose to patients that the drug they are recommending is one that they are paid a staggering amount of money to promote? Would I, as a patient, really believe that this doctor has my best interest as his only priority? Is there a level of compensation at which a reasonable person would not be expected to remain unbiased?

Studies showed that when doctors owned their own x-ray centers, their patients ended up getting, on average, more x-rays. In some states this is now illegal. But most big hospitals need to support themselves, and so work in partnership with doctors who do procedures in order to stay in business.

The comments and questions I would often receive while in training and occasionally since then, are telling. They went like this. ‘Wasn’t it awful working with all those greedy people on Wall Street?’ No, I replied. Most of the people I worked with were unbelievably smart, creative, and ambitious. Everybody was there to make money—it’s how you were measured. There was no deceit about it. But medicine, I saw, had many people who hid their material ambitions behind their job description. Maybe they were embarrassed by them. Maybe they knew that for them, patient care didn’t always come first. Every patient in America knows. Every doctor in America knows. It's the money.

I would be happy to volunteer to lead this effort, to define and examine the business ethics of medical practice.

The print at top is from my collection and is by Mary Cassatt.

August 4, 2009

An Aunt Who Shares

Nestles mother book 1 When a baby is born at the local hospital, the clerk in Labor and Delivery calls the pediatrician identified by the parents. The call I received one night about 3:00 AM was a little hard to understand. Granted, I had been awakened. But I asked the clerk for the patient’s name. ‘Oran…,‘ she said, then ‘Oranolantu…,‘ then ‘…bat…. “Do you mean Oranolantubaataar?“ I asked. Relieved, she told me I had a healthy big baby girl to come in and take a look at. I knew the family, and took care of the 4-year old son. I told her I’d be in later that morning. She politely told me that everyone in Labor and Delivery would really like me to come in now. I got dressed and went to the hospital, fearing the worst.

The Charge Nurse for L&D, who is the supervisor of all the nurses and operations of the department except for the obstetricians, and always one of the most experienced veteran professionals there, met me at the elevator, before I entered the ward. She said she’d never seen anything like it and didn’t know if it was OK and wanted me to evaluate this and write a note about it in the chart. She was afraid the hospital might get sued, and maybe a little afraid of losing her job. When I walked into the room, I was not prepared for what I saw.

The mother I knew was smiling happily in bed. Her labor had been relatively short with this second child, born about 2 hours earlier. She greeted me warmly in her broken English. I looked around. “Where’s the baby?” I asked her. She pointed to the chair next to her bed on which was a young woman. ‘Sister’ was her one word introduction. This woman was bare-breasted and nursing the newborn child.

I had never seen anything like it. I met with a group of the nurses, the charge nurse, and others.

The transition from unencumbered adult to parent is always unforeseeably and indescribably enormous. It seems that in recent years, the pressure on new parents has continued to build. The parenting shelf in the bookstore has become a whole section with many aisles. Perhaps it’s a good thing that you now can choose to learn what one author thinks you should have been expecting while you were expecting and another author claims to help you raise a child who is an over-achieving, healthy, gifted, socially adept, high IQ athlete who knows both how to control her temper and who goes to sleep without problems. (My approach to advising parents is almost always to ask the child to provide the right guidance. They usually know.)

Why has this proliferation of parenting advice taken place? The simple answer is that there’s a market for it. Publishers are aware of the demand and are in the business of meeting it. What’s behind this demand?

The desire to produce a text on childrearing isn’t new. Especially with the industrial revolution, the idea gradually took hold that maybe there was a ‘right’ way to raise kids.

Especially for the new parent, and the new mother in particular, these books can seem like an essential reference. There is a tendency for new parents and new mothers in particular to feel that the ‘success’ of nursing the baby, soothing the baby, even bathing the baby is a great burden that falls on them and them alone. If things aren’t going exactly right in the first days and weeks, it’s hard for new mothers not to see that as a personal failure. This is a major contributor to postpartum depression. But what has caused this crushing pressure? Is this part of Eve’s curse (Genesis 3:16)?


I don’t think so. According to archeological evidence, and teenage caveman 1958according to countless cave-people movies, humans most likely never went through a phase of living in completely isolated family units. The idea, maybe born out of the settling of the American West, that there would be settlers who lived a hardscrabble life by themselves on a ranch the size of some European countries, is not one that has typically existed elsewhere in the world. Sure there are subsistence farms and always have been, but they are small and the families live close to other families.

And, finally I’m getting to the point, all the households are multigenerational. With marriage as teenagers, there would usually be grandmothers and even great-grandmothers living with the new mother. There would be sisters and aunts with their babies, too. And despite the considerable work all the women were required to do, some of the work of childcare and an enormous amount of cumulative experience and wisdom would be easily available and given.

Though it’s a good guess that midwives, people with special expertise in childbirth, have been around for a long time, Lactation Consultants are likely a newer breed. Within a multigenerational household, there would be lots of sources of advice about sore nipples and babies who don’t latch well. I suspect that postpartum depression has always been with us, but some of its pervasive contributors--isolation, the feeling that every need of the baby must be met by the mother, the sense of failure if the mother’s milk hasn’t come in by day 3 or 4--would be so very much relieved by having a crew of experienced and trusted peers who know what the heck they are doing.

The baby’s mother was from one of the Mongolian families I take care of. Some speak no English at all. But they all live very near each other in one neighborhood of Oakland. Many bring their kids to me. Her sister had given birth a few months earlier, and was still nursing her own infant. In their culture, this wasn’t unusual--it was simply what was done.

About a hundred years ago, and for millennia before that, wet nurses were common. Women who couldn’t nurse or those who could but had the resources to avoid this task of the masses, would employ a woman whose lactation was maintained by her continued employment. There were few alternatives. (The picture above is from a booklet produced about 1900 by Nestle, for a product called NestlĂ©'s Food, which was among the very first commercial baby formulas. It’s from my collection.) But before there were professional wet nurses, there were women who would share their supply with the less fortunate, or the babies who had survived childbirth when their mothers did not.

One of the nurses asked if it was hygienic. Honestly, I didn’t know. I suppose, in these days of Universal Precautions and doctors afraid to touch you without gloves on, I could see what the concerns might be. There are some diseases which can be transmitted through breast milk, along with many medications. As politely as I could, I tried to get a little medical history from this other woman. She spoke almost no English, and the postpartum mother was translating my questions—I think. She’s the one who told me ‘she OK’ and left it at that.

I told the L&D crew it was OK with me and I would write an order in the chart explicitly allowing it.

The woodcut from 1550 is by Hans Brosamer and is from my collection. It shows the creation of Eve, her temptation, and the expulsion from the Garden of Eden. The poster from the 1958 movie Teenage Caveman was part of the collection I sold in 1992. Produced by—who else?—Roger Corman, I think it was Robert Vaughn’s first starring role.

August 1, 2009

Problems with Medical Ethics: Recruiting

phineas gage On September 13, 1848, a work crew was blasting rock for a railroad in Cavendish, Vermont. An accident with the explosives caused a long iron bar, more than an inch in diameter, to fly upwards, through the cheek and then through the top of the skull of one of the workers. There it lodged. Every medical student is told the worker’s story because it is one of the key events in how we have come to understand the brain. (Phineas P. Gage did not die from this huge bar through his brain. But those who knew him said that he wasn’t his usual self either. It was our first revelation that certain areas of the brain had specific functions.) This accident was important precisely because it was such a rare event, and made clear some aspect of the way our brain works.

So it’s logical that people in the medical ethics field should be interested in those unusual circumstances that can be used to point out key points about important questions. The focus of the field of medical ethics has generally been on bizarre combinations of circumstances that invoke debate on interesting and important issues.

Yet one of the problems with recruiting from a shallow pool is that all of the applicants tend to look the same. We tend to recruit people that look just like the people already there. Just like us. It’s human nature.

Who are the people who set the medical ethics agenda? Who picks the topics discussed at national conferences? Who writes the policies at you local hospital, where you and your loved ones might have your care guided—maybe even constrained—by the invisible hand of hospital policy?

The good news is that the people I’ve met who work in the field are nearly all smart, thoughtful, caring people who are genuinely interested in exploring areas of medicine and medical decisions that are new and complex. I’m really glad that there are plug1these people to bring out into the open air some of the issues related to nanotechnology, fertility treatment, gene therapy, and organ transplantation. I’m glad that if the decision ever presented itself, there would be intelligent experts who could help me decide whether or not a plug should be pulled.

As the field has become more essential for the increasing complexities of modern medicine, the job of ethicist has become, naturally enough, more professional. Most of the prolific writers of published papers in the field do it as their full-time job. For most of the others in the field, it’s an important part of their role in the institutions that employ them. Usually those institutions are universities, medical schools, and big academic hospitals. So it’s easy to understand that the problems they deal with are the problems they see.

Big teaching hospitals associated with medical schools are usually what we call tertiary care centers. Not primary care or secondary care, but what comes after that. When you see your pediatrician, for example, that’s primary care. That doctor might send you to a local specialist. But the specialist might send you to a sub-specialist at a tertiary care facility who’s an expert in just your exotic problem.


Thought leaders in the medical ethics field are sequestered like Rapunzel from the issues that working doctors face every day, again and again. Chances are overwhelming that your local hospital ethics committee doesn’t have a single physician in primary care. Ethics issues in primary care are almost never studied or written about.

The problem of ethics in primary care is related to the shallow pool. Though I have the greatest intellectual respect for those in the field, they don’t do what I do. Heck, they don’t even really know what I do. Only about once a year do I have a patient in the intensive care unit at the local tertiary-care hospital. True, I’m happy there’s an ethics committee on-site to provide some structure to difficult family decisions. But this insight does little for me in my day to day work. I work outside of an institution, not in a hospital or university.

In pediatrics in particular, ethics problems pervade everything we do. None of this was ever brought up in my training, curiously enough. A fundamental principle of ethics is autonomy. A patient, ultimately, should get to decide what’s best. In pediatrics, that almost never happens.

As a pediatrician, almost all my care is directed by somebody who isn’t the patient. The principle of autonomy is routinely ignored. Should it be? I’ve never seen this problem discussed by leading ethicists. Who is it that gives consent for kids to get medication? Indeed, who is it that has to bribe/trick/convince/cajole or force the kids to take the medication against their will? In the visit described in my post, A Mistake, we held a kid down, screaming, in order to take out a splinter. Was it ethical? What about vaccinations that I try very hard to convince parents to make the children get. Nobody wants shots!

If there ever is some kind of health care reform in this country, we will need primary care physicians to provide guidance for the allocation of resources. This will affect everybody, not just the Phineas Gages of the moment.

Here’s how I sometimes think of the field of medical ethics. Imagine if almost the entire field of geology the rockneil diamondonly studied diamonds. Fascinating, rare, important, diamonds. Everyone would be interested in the topic. Yet we would know little about the rock under our feet.