Mystery Diagnosis—the Doctor’s Role

More than a year ago, I wrote about a little-known entity that I have sometimes diagnosed in a mother who is complaining about wrist pain.  Called Nursemaid’s Wrist, it is hard to find online or even in many medical textbooks.  It has nothing whatever to do with Nursemaid’s Elbow, which is something that kids can get.  Nursemaid’s Wrist is a pain in the wrist that adults, usually mothers or those who care for infants, get from repetitively stooping to pick up a baby.

It’s easy, of course, to underestimate the weight of a baby.  The average birth weight these days is over 7 pounds, and by the time the baby is 4 months old, it might be double that.  If the baby were a bowling ball—professional bowler weight—it would seem quite heavy.  A 4-month-old weighs about the same as a 2-gallon container of water.  It’s easy to see how someone lifting and moving that kind of weight can get sore.  But they are moving that object with considerably more care than they might a plastic jug of water or a bowling ball.  The muscle tension required for fine movement control while holding on to a heavy weight puts an enormous strain on the whole mechanical system.  Some muscles of the body seem well designed to handle massive enlargement and strengthening if circumstances required it.  Biceps and shoulders, and the muscles of running and leg movement are good examples.  Except for a protective covering of skin, they have a good blood supply and can pretty much expand from exercise to whatever size is needed.  Though we’ve all seen photos of shockingly-massive bodybuilders, much of the muscle size they have is in these muscle groups.  The fact that babies are considerably more adorable than, for example, steel weights, gives us the motivation to keep picking them up.  Weightlifters, however, are not looking to build up or enlarge those fine-motor muscles, which are usually invisible even in the most defined physique.

The wrist problem occurs because those fine-control muscles, of the hand and fingers and forearm, are threaded though a remarkable system of lubricated sheaths to keep everything operating smoothly.  They are threaded through notches to keep them from tangling or getting caught on angles of our bones and joints, and they slip through guide-channels so that they don’t restrict the range of motion of our joints.  With enough repeated exercise, just like lifting a barbell, those little muscles get stronger—and bigger.  If they get even a little too big, they start rubbing the inside of the sheath they pass through, they rub against each other, and they don’t slide as easily through their notches.  This leads to irritation, inflammation, and pain.  Carpal Tunnel Syndrome is the best known of these, but there are others.  Treatment is simple, if inconvenient with a baby around.  Immobilize the problem area, ice if possible, and anti-inflammatory medicine like ibuprofen.

This leads to the important question of this post.  The same question has come up before and probably will again.  What, exactly , is my job?

I’ve worked in other practices where the pediatrician’s job is reasonably clear.  Since I was paid a fixed salary and the practice was paid a fixed price per visit, there was constant pressure from management or the owner/partners to do as many visits as possible.  There was never any kind of incentive, even appreciation, for doing a good job, being thorough, ending a visit without the child screaming and traumatized.

When I started my own practice, I wanted to do things differently.  I knew, of course, that the business model of the factory-production design of medical-care delivery was the way a doctor could earn a living.  There are some really good reasons that nobody else practices the way I do.  Still, I wanted to have the feeling of taking care of kids and dealing with the whole person.

That sounds great, but it is so different from my training and experience that some really confusing issues have come up.  In the 8-minute pediatric visit, the doctor has decided that your kid’s upset stomach is from a virus and not appendicitis, tells you to keep up with fluids, and has left.  That, to be blunt, is the standard of care.  Teasing out the history of stomach aches, the recent weight loss, and a recent history of food refusal could take an hour, especially if the doctor actually tries to ask the child.  And what about symptoms in the parents?  These could hold an important clue to what could be going on in a child.

Where does my care of the child end and care for the parent begin?  All of my insight about postpartum depression stems from my belief that it’s not all about the mother.  It’s the mother-baby system that somehow isn’t working optimally.  Helping the mother is de facto helping the baby, who is indeed my patient.  In the same way, I would strongly urge any parent to wear a bicycle helmet.  My patient needs you.  Without a head injury.

Which leads to the case at hand.  A mother, mid-30’s, was in today with her baby.  The baby was fine, but mother was wearing black neoprene wrist supports.  I asked what was going on.  She said that she had been having wrist pain and went to her doctor, who told her she had carpal tunnel syndrome.  Here’s where my role gets confusing.  What could she be doing that could give her carpal tunnel syndrome in both wrists at the same time?  I didn’t think she was working in a parts-assembly factory or on a computer since the baby was born 3 weeks ago.  She wasn’t, she confirmed, and after asking her a few more questions, it was clear that this wasn’t carpal tunnel.  Do I tell her her doctor was wrong? 

She pointed to where it hurt, which was the same on both left and right.  Uh, that’s not where carpal tunnel hurts.  It wasn’t where nursemaid’s wrist hurts, either, and that was what I had been thinking.  I touched where she said it hurt, and she confirmed a little bit of pain.  I asked her to hold her hand bent in a certain way, then I pressed her thumb across her palm.  This hurt a little, too.  In this position, I pressed on the spot pointed out by the arrow in the picture above.  She jumped.  This was the Finkelstein Test—I’m not making that up.  I know, it sounds like an algebra mid-term from high school.  (He published this in the late 19th-century, I think.)  Her reaction led me to her diagnosis.

DeQuervain’s Tenosynovitis isn’t something that people assume they have.  It occurs mostly in women, mostly in their 30’s and 40’s.  It is thought that long before Dr. DeQuervain stuck his name to it more than 100 years ago, it was known as mother’s wrist.

If a little knowledge is a dangerous thing, what about knowing about the Finkelstein Test?  I suppose it would be right to say I couldn’t be positive about her diagnosis, but I was pretty sure this is what she had. 

Here are some of the issues for me as a physician:

1. I’m not a doctor for grown-ups.  Do I mind my own business even if I think I’ve got a clue—and maybe they don’t? 
2. Do I say something cautious like, ‘Maybe you should get another opinion.’  Isn’t my opinion another opinion?
3. If I say, ‘Have you looked into DeQuervain’s Tenosynovitis?  It’s going around,’ what is the message I’m really sending?
4. If I say, ‘I believe you have DeQuervain’s Tenosynovitis,’ what is my next obligation?  Do I have to treat it or suggest treatment?
5. What if I’m wrong?
6. How much work do I have to do, especially since I can’t get paid for any of it?  Officially, the mother is not my patient.
7. Since I was bold enough to bring up the fact that I can’t get paid anything for diagnosing or treating the mother, it’s obvious that this fact doesn’t reduce my potential liability.

So here, too, is a problem with medical specialization.  I presume that if the crippling pain were bad enough, this woman’s repeated visits to her primary care physician would eventually have led her to an orthopedic surgeon.  Hopefully they have already paid for their college-age child’s BMW (not that I’m cynical about it), and will not simply advise the woman to have hand surgery when a splint and some Advil is all she might need.  In the meantime, my patient—a sweet baby who needs to be held and nursed and changed and loved by his mother—will suffer. 

Let me go one step further.  If I know the diagnosis, if I can help this woman’s suffering, don’t I have some sort of obligation to help?  Am I required to look the other way because of my contract with her health-insurer?  In this case, of course, there isn’t anything life-threatening that would meet the criteria of what any reasonable person would do.   This comes up, for example, when somebody is obviously gravely hurt and anybody—not just a doctor—would call for help. 

Do you think I’ll leave it at that?  I didn’t think so.  This case is a proxy for treating even my own patients for mental health problems.  Though child mental health care (and to a lesser extent adult mental health, as well), is usually either completely unavailable or nearly unavailable; though it is unaffordable if available; and though access to it is severely limited by health insurance, physicians are generally precluded from providing this care.  So even though I’m willing to do it, I do a good job—especially with certain problems, I’m available and I’m willing to take about 20-30% of what they would usually have to pay, insurance companies will not pay me to diagnose and treat most mental-health problems.  Some won’t even let me prescribe the appropriate medications.  (I can prescribe them, but they won’t pay for them.)

And it’s a proxy for the inadequate recognition and treatment of postpartum depression.  This is seen by me, diagnosed by me, treated by me.  I get paid nothing for this, yet there’s no one to whom I can refer these women.  I’m lucky that one of the authorities in the field is nearby and will take referrals—without taking insurance.  After her, however, it’s me.

Just because I make no secret of believing I should be paid for my work doesn’t mean I won’t do what’s required of me.  By me.  So I had to create my own practice where the family of the baby got what it needed for the benefit of the baby.  That, in the big picture, is Holistic Medicine.

I found some information on DeQuervain’s Tenosynovitis on the internet and printed it out for her.  Treatment required a completely different kind of splint, which I also described.  I don’t know the name of her doctor and didn’t ask who it was.  But I deeply suspect that there were only a couple of reasons that she was still suffering in pain.  Either the doctor didn’t know about this unusual diagnosis, or didn’t listen carefully enough to the patient.  It was in her description of the the problem, the timing of its onset, and the exact location of the pain that eliminated diagnostic possibilities like carpal tunnel syndrome.  I think these are both potential problems:  a doctor who doesn’t know or a doctor who doesn’t listen.  Nobody can know everything, and this is an unrealistic goal.  But it would be great if doctors would spend the time to listen carefully, and then be open about not knowing.  When that happens, good doctors hit the books.

As a closing aside, this is an ongoing pattern in Every Patient Tells a Story, a book about unusual diagnoses that I like a lot and reviewed in this blog a while ago.  Though the author was kind about it, the first doctor to see these unusual problems often didn’t make a correct diagnosis.  But at some point, all the patients described finally saw a professional who wouldn’t give up, even if they didn’t know.  They reasoned it out, did what homework was needed, and got to the diagnosis.  Of course, they weren’t paid more for this extra work than the doctor who said, because it would take the least time, ‘carpal tunnel syndrome.’

Vaccine Refusal and Ethical Issues

All the families who bring their kids to see me know that, in general I’m a supporter of childhood vaccination. On balance, the risk to your child of a devastating or lethal disease with known and terrible effects seems to dominate the risk of vague eventual possibilities of problems that are either unproven or completely debunked. This post is not about why you should vaccinate your baby. Though you should.

I’m in a pretty privileged position. None of my patients comes to me just because my name was on the list from the insurance company. A parent picked me, researched me, got my name from a friend or coworker. Sometime, I’m gratified to say, they get my name from a nurse in Labor and Delivery or from one of the lactation consultants or midwives. Some of my most difficult cases come to me on the recommendation of my pediatric colleagues who have practices of their own.

So it’s what is generally called a self-selecting group. They are here because they want to be here. When parents expecting their first baby come to interview me, many don’t know my views on vaccination. Perhaps it’s a result of being located here in Berkeley, but I don't get parents who have heard that vaccines are harmful, and want to learn my professional opinion. I get those who say they want me to be their child's doctor because they have read or heard about me, but have made up their minds about vaccines. I wonder what they really want from me. If they don't want my medical expertise, they why are they coming to me? How can I help them? I hope that I will always provide the best care I can, but I was not trained in and do not know how to provide some reduced level of care.

What prompted this observation is a comment I read on one of the informational websites for physicians. A very smart academic doctor pointed out that when we treat families who refuse vaccinations, we are really being asked to provide substandard care. He argued that if we send these families elsewhere, we have lost the opportunity—perhaps many opportunities—to educate them and help them appreciate the value of this intervention.

It makes sense to engage with these parents. Most of them are extremely well-educated and literate. I would love to give them literature on the subject, cite references, tell them my own horror stories to counter the ones they heard from the internet, the parent group, or in the check-out line at the local organic market. I'd love to tell them that one of the local Montessori schools was closed twice in the last year by the Public Health Department for being a center of major pertussis epidemics. But I get the sense that they are not interested in receiving this information, or perhaps just not from me.

The parents of every child make essential health decisions every day. They manage the diet, activity, and safety of their children. Hopefully, they balance protection with freedom, and find a way to let the child ride a bicycle but still make them wear a helmet. I don’t think I’m the only one who is shocked when driving in a parking lot and a toddler is walking along without holding a grown-up’s hand, while they walk far behind, texting. That’s not OK! I keep my mouth shut when this happens, but I mutter unflattering things as long as my car’s windows and doors are closed.

But I am required, as much by my own standards as those of my state licensing board, to practice at very least at the standard of care. If the kid needs an antibiotic, I prescribe an antibiotic. For this reason, doctors shouldn’t be complacent with the nonvaccinating parents. It seems like a strategy of engagement is a reasonable way to go.

But I'm scared. In the past couple of weeks, I saw in my office a pair of former preemie twins. They are now about 6 and 8 pounds or so, and just got out of the intensive care unit. They are over 2 months old. Having unvaccinated kids in my office would seem to put them at substantial incremental risk. What is my responsibility to them?

That's not the only reason I have problems seeing unvaccinated kids in my practice. I feel so strongly about the importance of a meaningful doctor-patient relationship that I'm unclear about my role in their care. If I prescribe a medication to help your child breathe but you don't give it to your child, and instead use what your homeopath recommends, why did you consult me in the first place? If HIB vaccine could save your baby's life (or brain) but you refuse it, how much trust do you really have in me, my judgment, my training? It's better to bring your child to an advisor you really trust, whose expertise you respect, who can provide the care you really want and value.

I have absolutely accomplished one of the goals I set out for myself when I started this practice. I have patients and families that I know and who respect my guidance. This is probably a logical point at which to note that this doesn’t mean slavish obedience! I expect my own doctors to give me their very best professional advice, and in return I promise them—though this is unspoken—that I will take it seriously and do the best I can. I haven’t always followed what they suggested. Occasionally, I thought they were wrong, or didn’t understand all the aspects to my situation or complaint. Most often I just couldn’t do what they wanted. I couldn’t afford it, couldn’t spare the time, couldn’t make it work for me in some important way. But it has never been because I thought they were stupid, uninformed, or malicious. It wouldn’t say good things about me if I continued to go to a doctor like that.

So if I recommend that you let me painfully inject into your baby something you believe to be poisonous, toxic, or unproven, or if by recommending this your belief is confirmed that I am little more than a meretricious shill for the Big Pharma cabal, why would you want me to see your child?
 
Sometimes, when the prospective parents are interviewing me but before they storm out of the office, the reason comes out. I’m not really going to be their baby’s doctor. I’m the safety net for the naturopath, homeopath, or chiropractor who will really be managing the baby’s care. Then, if something goes wrong, they can bring the baby to me.


So the first ethical problem I have with treating families that don’t vaccinate is the fundamental nature of their request. They have asked me, with their full consent, to provide substandard care. When asked about this, a physician said that it was like the family refused to use a car seat for the baby. They ask the pediatrician, however earnestly, ‘What’s the best way to hold the baby while driving?’ Not only isn’t there a good way to hold the baby, but it would be unethical to do the research which could tell us if holding one way is 100 times more potential lethal than using a car seat but holding a different way is only 92 times more potentially lethal than using a car seat.

This is a line from a common translation of the Hippocratic Oath: I will prescribe regimens  for the good of my patients according to my ability and my judgment and never do harm to anyone. There isn’t much about doing less than my ability because the helpless baby has parents with...issues.

But the second ethical problem is obvious. Though it doesn’t come up in Hippocrates, it’s a central tenet in medical ethics. Autonomy. The patient has the right to make decisions about themselves and their treatments. With children, it’s generally understood that this means that the parents get this autonomy. When exactly this ends, by the way, is unclear. Legally, kids who are 18 acquire most of the medical rights of adults. This is confused, of course, if mom and dad are still paying for the health insurance. And, varying state by state, teenagers of a certain age can ask for and receive contraception or contraception counseling. Sometimes psychological services. Babies...not so much. Our society makes an implicit assumption that a baby’s parents have the best interest of the child at heart. Luckily and almost always, that’s true. The parents who choose not to vaccinate aren’t trying to hurt their baby, they are trying to protect it in the best way they know. Given this complete and unquestionable lack of malice, don’t they deserve the autonomy we all expect?

And one more thing. If a parent came to my office obviously intoxicated, I wouldn't let them drive home. Maybe I’d call a taxi, maybe I’d drive them home or call someone to pick them up. I would intervene in some way to protect them, their child, the community of unsuspecting and unwarned drivers on the road who all agree to follow some shared set of rules that protect them all. I don't know how to resolve this ethical dilemma between their autonomy and my responsibility. When they decide not to vaccinate, it's not like holding the baby without a car seat—it’s loosening the straps a little bit in every baby's car seat. What's my obligation to them?

So I think there’s a third ethical problem: my responsibility as a physician in the community, perhaps as a citizen. It would be wrong to cry out, ‘Fire!’ if there was none. But do I have an obligation to cry out if I see one?

Anxiety--College Boy and Autonomy Issues

bart-map

Peter was at college here in Berkeley, and needed a physical exam form filled out for a summer job he had applied for. He came in with his parents. I asked them if they were worried about anything in particular and they said that he had been very healthy. But they wished he'd get out more. Maybe be a little more...outgoing. He looked very relieved when his parents left the room.


"Gosh," I said, "I thought they'd never leave!" He smiled briefly. I asked how college was going, if he had a major.


He said, politely enough, looking at the floor, "It's going OK. Don't have a major." Didn't I recall that he was interested in Economics? "Yes, but I didn't get a good feeling from those people." Meaning, I took it, from those in that department. How about people in other departments? I told him I thought there was a lot to be said about finding a group where you feel like you fit in. "Maybe, but I don't fit in." Still no eye contact.


"You haven't made a lot of new friends?"


"None, really."


"Are you in touch with your friends from high school?"


"I had two friends in high school but they are going to college in Hayward [Cal State]." It is a sad fact of suburban life that the logistics of socialization are often very cumbersome for children. (This is very different from my experience growing up where public transport was great and cheap.) But he was 21, not 14. What about borrowing a car from his parents? "I don't drive."


"Why not? Didn't they have driver education in your high school?"


"Yes but I stopped taking it after the first day. It was just too dangerous." But his mom and dad drove, I pointed out. "But I won't drive with them at night. Anything could happen. No," he added for emphasis, "I definitely don't want to drive."


Most 16-year-olds have, at least in their minds, cut from magazines the photos of the cars they want to have. A car, or access to one, or even without access but having a driving license, meant adulthood, liberation from the control of their parents, freedom. Most American teenagers have much clearer dreams of owning their own car than they have of owning their own home someday. I think that this is less prevalent among those growing up in urban settings. (A wealthy high-school classmate of mine had his own car, but I don't know where he drove it (let alone parked it) and neither I nor most of my other classmates were envious.) But this is California, where having a car or wanting one is or should be considered an essential developmental milestone, like walking or potty training. When he said that he didn't want to learn to drive, whatever alarms were not already ringing for me started to go off. "What about going to Hayward on BART?" [Bay Area Rapid Transit--a not very extensive system, but fast and reasonably comfortable and clean.  And ] I knew he lived in a town with a station.


"That goes under the Bay!" he explained as if I has somehow been misinformed about this fact.  But it didn't between Berkeley and Hayward.


At some point, I stood up to wash my hands and examine him. I went to put my stethoscope on his chest, but stopped. "Gosh, Peter. Have you been gardening? Working with paint solvents?" His hands were red, very dry-looking and irritated. He denied this but said that he washed his hands a lot. Mine were not so raw, and I typically washed them 20 times a day, sometimes more.


"I know. I'm a bit of a germophobe."


He was attending college locally. So I asked him if BART was uncomfortable for him, why wasn’t it a problem taking the public transit bus to school?  He told me that he walked to his college campus, about 3 miles or so from his home. He admitted that not using public transportation was a real barrier to making and sustaining new friendships at college.


Continuing in this line, I was worried about what would come next. As I would ask any patient his age, I asked if he was dating anyone. I assumed that this would be logistically difficult for him, given his transportation constraints. He said he wasn’t in a way that concerned me. Sometimes I get a disappointed response, when the college kid wished they were dating somebody. Sometimes it’s a blissful yes they are. He looked at me at me with an odd expression of confusion. Now I was confused about why he was confused. I asked him to clarify what he was thinking.


He told me that he wasn’t dating and convincingly claimed not to know why people did. Let me be really clear here:  I asked about just dating, nothing more intimate. Yes, he knew classmates in high school went on dates or wanted to and talked about it.  He knew they did in college. I asked if he knew how his parents met. Like most of us, their relationship started with dating. But he didn’t really see why people did this. There were so many obstacles that he pointed out. Getting together in a certain place and time, which is a key part of the definition of a ‘date,’ is very difficult if one of the people has to be within walking distance of their home. Holding hands seemed unappealing to him, and kissing appeared positively unhygienic. I asked if he would like someday to have a family of his own and a mate. He said that he would but he didn’t know and couldn’t picture what kind of a person that would be or how he would get to there from where he was.


I spent about an hour with him, much of it trying to figure out the level of isolation to which he was willing to subject himself.


I told him he had anxiety. I recommended many things, including trying some medication. I was willing to work with him in any way that I could. He was willing to commit only to think about these choices, or if he wanted to do anything at all. So deeply did he see his perspective as an accurate view of the world that he didn’t see it as a problem in his life. I asked about continuing to live with his parents, and he didn’t see a problem with that, or limiting for school or work to a walking-radius around his parents’ house in Berkeley. Gently, I tried to point out that it might be difficult to meet somebody under these circumstances, but he was blind to this. He didn’t try to reconcile his dream of having a family with his disinterest in looking for somebody with whom to start that family.

handicapped sign

Before I met with Peter, the 21-year old college boy with anxiety, I asked his parents if there was anything they were concerned about. He said, “Well, it would be great if he were a little more outgoing.” I hadn’t seen the boy in a couple of years and didn’t really know him well since he didn’t go to the doctor much. Was he shy?


An hour or so later, with them waiting patiently outside the exam room, I knew he had a full-blown anxiety disorder. Many people have some anxiety in certain situations, like public speaking. Some people have more focused anxiety about specific things, like spiders or heights. Some have anxiety about things that they themselves know intellectually to be fairly harmless to most other people, such as a fear of balloons. Some fears are so unusual that the person is able to talk about them freely, and knows that they are not an issue for everyone else they have ever met, but the fear is quite real to them. Perhaps a great thing about the internet is that it can give this last group of people the ability to connect with the 1 or 2 or 5 other people who share their unusual problem. By example, there is a community, of sorts, for those with a fear of buttons.


He lived at home with his parents. There’s nothing wrong with that, of course. His parents were nice people and nice to him. And they never threatened to kick him out. They probably never would. That’s a nice thing, too.


But he never indicated that there might be advantages to living away from his parents. More than that, he couldn’t fathom why anybody his age would want to move away from home. It wasn’t like he was so emotionally tied to his parents. I had spoken with them, though not about him. They went on vacation, sometimes camping. They went out to the movies sometimes. Most of the time, I learned from Peter, he never wanted to go. I could picture a dysfunctional relationship in which he didn’t want them to leave, but he never objected. He was most comfortable just staying at home. Alone.


He wasn’t psychotic about his anxiety. He didn’t believe (or say he believed) that if he rode the bus then the world would end by a volcano emerging under his suburban town just as a meteor hit the earth causing an rip in the space-time continuum which would provide an attack opportunity for the Monsters from the Id.


Still, I had a bad feeling about where this was heading. Unlike the College Girl I had seen just a day before, he was not tortured by his anxiety. He knew that others weren’t as concerned as he was about many things, but the way he thought was obvious. Every unusual fear was completely reasonable, and he was almost bemused about the mad foolishness he witnessed around him. To him, our riding in vehicles of all kinds appeared like those who walk tightropes over great gorges. He saw that people did it, that they could do it regularly, but you’d have to be positively nuts actually to try it.


This is also how he saw the pursuit of human relationships. This was another big difference with the College Girl. She didn’t have a boyfriend and wanted one. She absolutely did understand why her peers were in or wanted to be in a relationship. She also understood what was keeping her from achieving this goal. She perceived her anxiety as a handicap that she hated, a roadblock she was desperate to overcome and was so far unsuccessful at doing so.


Was he really forthcoming with me? Like every patient, he was entitled to his privacy and owed me no explanation. Some doctors, I know, think that if a patient isn’t open about something, or if a patient fabricates something, then they can’t or shouldn’t help them. It’s certainly an impediment to treatment when a person doesn’t seem to respond to medication that they say they are taking but aren’t. But mostly if patients want me to give them my best advice and they want advice based on some hypothetical situation, that’s what I and they will be stuck with.


Is this denial? Once I saw a child who had been in and out of emergency rooms at least 4 or 5 times over several months. Every time the family went in with him, he had trouble breathing. He was given breathing treatments and medication and sent home to follow up with his primary care physician. They didn’t give him the medication, didn’t make the follow up appointments. They needed a form filled out for school, and the doctor told them that the child had asthma and would benefit from better control of his symptoms. They changed doctors, and came to the practice where I used to work. I told them their child had asthma and would benefit from better control of his symptoms. He went to the ER again, then they asked for their records to be transferred to another practice.


Is it my job to puncture his denial, if it is? Is it my role to judge his life decisions as somehow inadequate, as incompatible with happiness? Is my definition of happiness and success as an adult a reasonable goal? There are societal norms, of course, and he was aware of these. Marriage, family, work, kids, and so on. Certainly here in one of the epicenters of alternative lifestyles, there aren’t a lot of choices that wouldn’t be tolerated. Besides, I lived in Utah for 3 years. In ways that I appreciate more from a distance—topographical, chronological, and metaphorical—some of those people were very much willing to do a lot to live outside of the mainstream. Whether in shallow swamps of consanguine genes or in isolated heavily-armed bunkers waiting for the race-war end-of-times, they were going to do it their way.


Let me be explicit about some of the ethical issues associated with this case.


1. If the patient doesn’t think it’s a problem, is it a problem? Before there were Wall Street executives who didn’t take any responsibility in their congressional testimony, there was a panel of Tobacco CEOs who swore under oath that they didn’t believe that smoking caused health problems. That seemed sleazy and dishonest. But if a patient says that they are just fine with what they are doing, does it matter if they are in denial or are out of touch with reality?  Does the doctor have an obligation to do more than educate, inform, and offer help?


2. Is Peter hurting anyone else by his inattention to his anxiety disorder? Sure, his parents had dreams for him that might be difficult to achieve. But who among us has parents who have always thought that we would be exactly who we are now? I am, to be blunt, worried that what appears typical enough at the moment—a college kid living at home while attending a decent and popular local institution—could become more cumbersome as the years go by. Do his parents deserve a life of their own, without their kids? Do their kids owe them the freedom gained by moving the heck out of the house at some point? And the parents aren’t my patient, so should I care what they need?


3. I want to repeat that last part. The parents aren’t my patient. This is an easy issue for some of the patients I see. I have a patient who’s nearly 30 now, severely developmentally delayed. I have autistic kids who are technically autistic adults. It’s an easy issue for them because they have legal guardians and decision-makers. Not Peter—he’s warm and smart and going to college. But in some ways, obviously from these essays, I think of him as having a handicap. It’s not politically-correct, I know, to use that term at all. But there’s something about him, that is with him in every setting, that often interferes with his achievement of some of his own goals. It interferes, in my professional opinion, with his ability to meet some criteria of independent—if not happy, perhaps—adulthood. The Americans with Disabilities Act of 1990 says a covered disability is a physical or mental impairment that substantially limits a major life activity. What, if anything, should I tell his parents? That their kid is sick and needs to have medication spiked into his orange juice? I want to tell them everything. They are his best advocates, they know something isn’t right. He gets along well with them. Shouldn’t they be there to encourage him to seek the help I think he needs? A lot of parents read this, and would probably agree. But what about when you were 20—would you have wanted your doctor calling your parents?

Cultural Sensitivity

A delightful couple, pregnant with their first child, came to the office to interview me, to help them decide if I was the right pediatrician for their baby. We had a lovely chat and I felt that I was doing well. At the very end, they asked a question. “Do you have many Asian patients? Do you find you have to ask questions a different way with them or that you have to take a different approach?“ I took these questions as an inquiry about my level of cultural sensitivity. I had a long answer. For the record, though, these people looked by their facial features to be of Asian ancestry; the last name appeared to be of Japanese origin.

“It’s the Bay Area, “ I replied. “What are the odds?“ They agreed it was pretty likely that I had some Asian patients. This was the beginning of my reply.

I told them I took care of a group of about 8 or 10 families from Mongolia. They all live near each other because only a couple of them speak any English at all, and the language barrier is substantial. taking care of them has sometimes been a challenge. there are no patient-education materials available in Mongolian. AT&T has available translators via telephone in dozens and dozens of languages, but Mongolian is not among them. I called UNICEF at the United Nations in New York. They did send people to Mongolia, but they had no patient information. Same story when I contacted the World Health Organization in Geneva, Switzerland. At one point I had a polite exchange of emails with the Minister of Health in Ulan Bator, Mongolia. He or the person composing the emails under his direction and signing his name, had good English-Language skills. His office had no written materials on child health in Mongolian. These families are Asian. Am I culturally sensitive with them? Probably not. Since communication is so difficult, we need every extemporaneous sign language technique we can come up with just to convey information.

So cultural sensitivity is not helped by a language barrier. I take care of these Asian patients, but do I take care of them differently? Yes, I suppose so, but it’s not because of a cultural divide.

I’m reminded of a classmate in medical school. When he was 14, his parents and he joined many others on a small boat headed blindly from Vietnam out into the South China Sea. Obviously they made it, and he’s now a fine surgeon. What should I know to deal with his family in a Vietnamese-friendly way? Are Koreans different?

When I was in business, there were no courses that were required, but everyone knew that Japanese investors and businessmen expected certain salesmanship behaviors when they were entertained in New York. In Japan, a completely different set of rules applied. I wasn’t called cultural awareness, it was called good business. In Hong Kong, it was often thought best not to mention that you’d just had a successful series of meetings in Tokyo.

So what was this nice couple asking me? If I had other patients who, by their visible bodily characteristics, appeared to be of Asian descent? Nearly half the human race is of Asian descent. Were they asking if I treated my patients of Japanese descent as if they were Japanese? I don’t know. How many generations have been born in the United States?

I take care of a nice family, for example, with a hyphenated last name. They are all American citizens. They say that they are Brazilian. When their kids were born, I encouraged the parents to speak only Portuguese to them at home. The mother’s ancestors were from Portugal. She looks like a European might. The father’s ancestors were Chinese. He looks Asian. The kids are…adorable. Is this an Asian family? I don’t think even the father’s parents speak much Chinese, back in Brazil. How Asian to you have to be? How Asian to you have to look?

No institution with which I have been associated over the last 20 years or so has failed to offer--actually require, I think--a course of some sort in cultural sensitivity. As demanded, I have wasted valuable hours in these courses. In one, the head of a fabulous Spanish-language health clinic gave a presentation on cultural awareness to the Latino community. Assuming that language wasn’t a barrier, what could I do with that? Ask a proud Ecuadorian if they identify more with Mexicans than with Americans. Ask someone from Spain. Will I learn about the distinctions of all those who speak Spanish in a short course or lecture on cultural sensitivity?
I have a family from Yemen. Devout Muslims, they appreciate that I never extend my hand to the mother. I try to be respectful and to the point. I don’t even close the exam-room door when I see their kids and the father isn’t with them.

I think that doctors--people in general--look fake when they try to be someone they’re not. I also think that doctors can be particularly culturally insensitive. But I think it’s cynical political correctness to require learning cultural sensitivity. What they really need to learn is just sensitivity.

There’s no way that patients will perceive a doctor to be sensitive in a 5-minute visit. The doctor you’ve never met, comes in while reading the chart for the first time, doesn’t know your name, does humiliating things to you, then leaves without hearing your complaints or insights. In which culture is this considered acceptable? What part of the world do you have to be from to feel better after this encounter?

If physicians are going to be culturally sensitive, they must first spend enough time with the patient to listen. Maybe they can take a course on reading body language and eye contact, tone of voice or listening skills. Maybe they can learn to interrupt just a little bit less. This would go a really long way towards sensitivity to what a patient really needs. I don't think it's helpful to put on an air of paternalistic cosmopolitanism—like an anachronistic white man's burden—that says to patients that overeducated well-to-do Americans can feel inappropriately self-confident about learning in an hour what they have taken a lifetime to master.

It's nice if you and your auto mechanic grew up in the same neighborhood. But it's a lot nicer if you find a mechanic who treats you well, listens to your complaint, and actually fixes your car. Which one would you choose?

Medical management (and this applies equally to corporate management) shows astounding hubris to impose an unsupported belief that patients will perceive as a better experience a visit with a doctor who has memorized a few facts about your grandparents' country of origin. Whether the patient is from Mongolia or Malaysia, Brazil or Burundi, I don't pretend to be something I'm not. If doctors could spend more time, could simply have more empathy, listen to their patients and think about what it's like to live a day in their shoes, cultural sensitivity would just be sensitivity.

Piecework Economics and Slow Medicine: Churn Rate

“Piece rate is more suited to repetitive crew work (e.g., boysenberry picking, vineyard pruning) than to precision planting, fertilizing, or irrigating. As the tie between individual work and results is diminished, so is the motivating effect of the incentive on the individual.”     --Gregorio Billikopf

It’s the money, stupid.  I don’t write about money much, though I haven’t forgotten everything I used to know about it.  I try to keep both this blog and The Empathic Pediatrician about medicine.  Sometimes, however, te topics of money and medicine overlap.

Primary-care doctors like me are paid by the visit.  More visits, more money.  There’s a huge incentive to see patients as quickly as possible.  This can be called efficiency if you’re the insurance company paying for it.  If you’re the patient, what is it?

It’s certainly not to your advantage.  I strongly believe—more strongly as I become more experienced—that taking the time to get to know a patient, which in my case is typically a child, has enormous benefits and increases efficiency, though defined within a different parametric model.

I found this fantastic essay on piecework economics by Gregorio Billikopf when he was at UC Davis working on farm worker pay systems.  It’s balanced and well thought-out.  Farmers have to be fair and consistent in the way they pay people in order to keep them motivated.  Deception and mistrust are always possible in the context of thin profit margins and hard work, however, so they have to be careful to honor their commitments.
Doctors who do a lot of procedures have accomplished such dominance over the medical system that they are paid per procedure.  More procedures, more money.

Everybody, as far as I know, is stuck with the same 24 hours in a given day.  How many visits can you do in that day?  I know of physicians doing 40 visits in 8 hours, and taking an hour for lunch.  That’s about 5 or so minutes a visit.  With the time needed for physically moving from room to room, what do you think?  4 minutes?  You might have a chance to say that your chest hurts but not explain that you can’t afford your heart medicine.

The specialist doing procedures has even more incentive to perform quickly.  If a patient is seen who might or might not benefit from an intervention, which choice would the doctor make?  What if the procedure cost $2000?  What if they could do 10 or more in a day?
 
Obviously, I wouldn’t be writing about this if I didn’t think it was a problem.  As always, I hope, my view is not a dogmatic one.

As in so many things, the people who run medicine are so comfortable in their Procrustean Bed that it would be irrational of me to expect from them a measure of horizontal thinking.  That’s not quite fair, I guess.  They haven’t walked 30 years in my shoes.

This post is really about Portfolio Analysis.

About 7 or 8 years ago, I made a house call to a modest home.  I examined the toddler in the living room, while mom was in an adjoining room.  I had made a lot of house calls, and thought it was interesting that I was seeing the kid alone when the mom was obviously concerned enough to call me to come over.  The child was OK—I think she felt better just because I came to the house and looked her over.  It was a brief awkward moment, since I didn’t know if I should just call out to the mother that I was done.  The girl sensed this, and took me by the hand into the other room.  “She’s trading,” the child explained.

There, in front of 2 big screens filled with numbers, charts, and several moving tickers, was the child’s mother.  “I’m done,” I said.  After a brief discussion of the illness I added, “nice setup.”

She went on to tell me that she had quit her job and was trading stocks full-time.  She described a little bit about the amount of information she had at her disposal.  She also described her confidence in being able to make money consistently, day after day, by taking advantage of small movements in stock prices.  I wished her the best of luck, and left the house as quickly as I could.  I knew some things that she just didn’t know.
She had only limited experience of a couple of years with financial markets.  Nearly every model of market activity makes some fatal and incorrect assumptions.  I knew this because I had looked for and failed to find this kind of El Dorado she thought she knew.  For example, she and her model assumed that markets were continuous.  Which is to say that if things turned against her she could get out.  That’s true until it stops being true.  There are many times that the markets drift up or down for years at a time, until the one day that a world leader dies or a bomb goes off and all the markets are suddenly closed.  She could wake up broke.  And the illusion she had of information quality was astonishing to me.  She was getting information many minutes behind those who knew it first.  She wasn’t seeing trades—she was seeing the history of trades with a 15-minute delay.  The pros, just like used-car dealers, often kept the best for themselves.)

Sadly, this delusion applies to professionals, too.  Maybe that’s obvious from the amount of our money they lost in the last couple of years while getting paid so well for it.  There’s now a substantial body of important research that shows that professional investors—the managers of big and well-known mutual funds and pension funds of all kinds—simply don’t do better than you would do if you just bought one of those stock indexes and left your money sitting there.  In fact, the more they tried to beat the market by thinking they could pick the stocks that would outperform and get rid of the stocks that would underperform, the worse they did.  In professional jargon, this is called the Churn Rate.  It’s a measure of how often the manager was buying and selling, buying and selling, with every iteration costing transaction fees and causing taxable events.  For doing this, and doing worse than doing nothing, the manager’s substantial pay was deducted from your investment return.  You paid for it.

And this is a part of how I look at this aspect of the backwards financial incentives facing physicians.  There’s no financial incentive to get the patient well, but there’s a big incentive to increase turnover.  What patients need is simply not considered in any part of the system.

I would like to get to know each child, each family.  If insurers had the long-term perspective of somebody investing for their distant retirement, they’d see it my way.  Much slower, more thorough visits to cover every issue.  Continuity with a single doctor who can manage some of the burden of a chronic medical problem.  This would result in reduced need for future and costly interventions, fewer emergency visits for unaddressed problems, less need for expensive medications, and happier, healthier patients.  It would save money.  Most physicians, I think, want to provide really good care.  Let them, and they will.

Ethical Dilemma: Do the right thing or keep the patient?

Robert is one of my troubled teenagers.  To him, his parents seem outrageously restrictive and inflexible.  No particularly innovative insight is needed to recall the times in ones life when parents seem less like a tugboat, pushing and pulling us ahead, and more like an anchor, holding us behind.  He came to me for an ADHD evaluation, in the course of which I noticed his itchiness, and thought he should get some allergy testing.
For most of his 15 years, his family moved every few years as dictated by his father’s diplomatic career.  Now stationed here, his European parents have lived all over the world.  They had just begun a stay in Thailand when Robert was born.  He was scrawny then (as he is now) and became jaundiced.  I have written previously about jaundice in a newborn.  Though his parents didn’t remember the levels in his blood, they were told that his jaundice was quite serious and that the baby needed a blood transfusion.

The idea behind transfusion for this problem is simple enough.  If we take out the blood that’s packed with bilirubin--the natural breakdown product of hemoglobin that can build up in the blood--and replace it with blood without bilirubin, then it’s much less likely that bilirubin will get deposited in the baby’s brain.  It’s the treatment of last resort, and his mother was told that it was necessary at the time.  This is 15 years ago, remember, and technology has improved since then.  Even so, I’m not experienced enough in international medical practices to know the level of vigilance used to screen donated blood in most of the world.

When I proposed doing some blood tests for allergies, given his history of itchiness and runny nose, his mother asked if I could do a test for Hepatitis.  She told me about the tranfusion in Thailand, and I added the blood test to the laboratory order form.  His test result indicated that he had been immunized against Hepatitis A and B.  The test was ambiguous for Hepatitis C.  I looked up his specific test result, and the references I looked at said that he should get a follow-up test or two to be sure he didn’t have it.   This didn’t seem ominous to me, just something that needed to be done to be thorough.

I called his parents to discuss the tests, and mailed them copies of the test results and a printout of the reference interpretation that indicated the necessity of another test.  I tried not to make a big deal out of it--but I was clear about what needed to be done.  I asked his mom if she wanted me to mail her another lab form or if she’d pick one up in the office.  She said it would have to wait.  She explained that it would have to wait until we do another round of allergy or other blood tests.

She asked me not to tell him about the test.

Huh?  It’s not like the lab sucked a half-dozen tubes of blood out of his arm without him knowing about it.  She told me that he doesn’t know anything about the transfusions, the jaundice.  Somehow, she said, it never came up.  I was confused--wasn’t he there when I filled out the lab form?  Where was he when his mother told me the story about the jaundice?  I couldn’t remember.  During the long visit, he got up to go to the bathroom.  Was that when she told me the story about him as a baby in Thailand?  She never told me not to tell him anything, and I just assumed….

I was silent for a long time on the phone, and she asked if I was still there.  I do not withhold anything from my teenage patients.  Already struggling with trust issues (parents usually try to convince their teenagers that sex is lousy and nobody should think about it), I have found that the only dependable way to establish trust with a teenager is to be 100% open with them all the time.  If they want to keep something from their parents, I try to use my best judgment to support them or to explain why I disagree and push them to do the right thing.  I am always very clear about the secrets I cannot keep, such as those making me fear for the child’s safety.  It doesn’t work the other way around:  when I am occasionally asked by a parent to keep something from the teenager, I just say no.

Many times, for example, I have been asked by a parent to test a child for drug use.  I tell them that if they want to find out if their kid is using drugs, ask the child directly.  Perhaps surprisingly, many teens will be quite honest about it.  If they aren’t, the parent might want to try another tactic.  But I am the child’s physician, not parole officer.  [There are circumstances, most of which occur in emergency rooms, in which a drug test is sometimes done without consent.  That’s true for adults, too, by the way.]  I have never tested a competent teenager for anything without telling them about it.  I felt manipulated by the mother.

I told her that I thought this was a bad idea.  If he had hepatitis and she (and I) knew about it, surely she would tell him.  She agreed with this but noted that if he didn’t, why should he have to worry about it?  There’s usually only a few days between lab test and result, I pointed out.  That didn’t seem like a lot of worry.

I looked at it a different way.  If he didn’t have the disease, yet found out that we had tested him for it, the trust I had built with him would be gone, and could never be re-established.  And the trust of his parents would be a mess.  I told his mother that this was a dangerous plan from the point of view of her relationship with her son.  She said that he was already unhappy, and didn’t think he could handle the anxiety.
That upset me.  Many studies on adults clearly show that the paternalistic witholding of bad news is universally counterproductive.  Paradoxically, it increases patient anxiety (we tend to fear worse scenarios than the actual bad scenario), and damages the relationship between patient and whoever it is who was supposed to be telling them the truth.  Often that’s a doctor, but it might be a family member.  So her assumptions about how this bright, sensitive teenager would take the news either way was simply misinformed.  Inevitability is the elephant in this room.  Even if I don’t tell him, he’s going to find out.  Maybe not today, not tomorrow, but someday he will.  And when he does, she may lose him over this.  Who is she really protecting?  His delicate sensibilities or her denial of a lifelong lie that she would now have to confess to her teenager?

Getting to the point, I am  ed.  If I take it upon myself to tell him, she’ll fire me and the damage to the relationship that his mother fears will come about.  If I don’t tell him, I am facilitating this lie and being bullied into doing the wrong thing.  And when he does find out, I’ve lost him just the same.

I did my best to convince her to have a heart-to-heart with this nice boy and apologize profusely for her mistake.  With the troubled kids I see, they get themselves into this same situation all the time.  They don’t do the big project for their least-favorite class, but say they did it, thinking that they will catch up in a few days.  Then it’s a week overdue, then a month, then suddenly mom and dad get a call about summer school.  Maybe we’ve all been there, maybe there’s a MasterCard with our name on it about which this all seems hauntingly resonant.  It’s the human condition, and I was sympathetic to her situation.  But I was angry about being pulled into it unawares.  I was tricked.  How can I trust her in the future?  How can her son?

Now what do I do?

Please comment and let me know what you think I should do.

Honesty vs. Hope: An Ethical Dilemma

Lupus pilum mutat, non mentem

At our last visit, Franklin spoke to me in private.  “Will it get better?” he asked.

“Will what get better?”

“My parents.”  His parents had recently been suggesting to him that his antidepressant medication cost should come out of his allowance and if he were more like his two younger brothers, star athletes and students, he would be costing them a lot less.  He needed to get away from them any way he could.  He played X-Box video games.  Given his ADHD, this was the perfect escape, and would hold his attention for hours.  But this bothered his parents quite a bit.  They didn’t feel like they were being responsible parents if they let him play video games for hour after hour.  So they decided that he was to play no more than 1 hour.

Most parenting authorities would agree with this restriction, I think.  I, too, think that it’s reasonable for parents to restrict the amount of time a kid is playing video games.  It’s reasonable to limit the time to 1 hour. 

But I know something else:  it’s completely arbitrary.  Yes, there are studies that show that increased screen time is correlated with obesity, social dysfunction, and other problems.  But at what duration do those problems suddenly occur?  Nobody knows or has looked at that.  Is 15 minutes safe?  What about 120 minutes?  Because I believe television is a drug, how much of a dose will cause some effect, and what dose will cause trouble?  Franklin may not have been familiar with the research in this field, but he knew in his gut that the 1-hour limit was arbitrary, and that his parent picked it out of thin air.  He also knew that he was unnaturally thin, didn’t snack, got plenty of exercise, and that whatever social problems he had weren’t caused by his screen time.  His parents made another mistake.  When they insisted that he reduce his video game time by hours, they didn’t offer him any alternative ways to spend those hours.  He was doing well in his classes, and keeping up with his assignments.

When he spoke to me in private, he told of many little remarks made by his parents.  They weren’t directed at him, they weren’t meant to hurt his feelings.  They weren’t insults or denigrating.  They were, however, part of the family lexicon.  He recalled this statements in precise detail, and I don’t doubt him at all.  Sometimes they came when a parent was talking on the phone to a friend or relative, sometimes it was a statement between the parents, and sometimes it was something said sotto voce to one of his younger siblings.  Franklin heard them all, and he knew what they meant.  ‘We can’t go because Franklin….’  ‘Why can’t Franklin be more like you?  You never cause us any trouble.’

Families have a jargon all their own.  Big companies have this, the military has this.  Sometime restaurants do, too:  Adam and Eve on a raft famously meant poached eggs on toast.  And wreck ‘em was added if you wanted scrambled.  When his brothers fought, sometimes one would teasingly call the other Franklin; a parent would smirk.

So he asked me one of the hardest questions I have been asked.  He asked if it would get better.  The easy way out would have been to say one truth, ‘I don’t know.’  I can’t predict the future, so I could have fallen back on that dependable standard.  But he wasn’t really asking me for a prediction, with dates and times for the coming apocalypse, for example.  Just as so many parents do, he was asking my professional opinion.  Based on my training and experience, my intelligence and intuition, what did I really think?  Would it get better?

This is an ethical problem, too.  Do I make him feel better or do I tell him the whole truth as I know it, not just a statement that happens to be a true ‘I don’t know?’  When I ask my own doctors if something will get better and they say they don’t know, is this the whole truth?

I knew a more substantial truth than ‘I don’t know.’  I knew from my own family and from the families I knew since childhood, from the families of my parents’ friends in their retirement community.  And I knew from the children I have seen grow from babies to high school students.  Most parents have told me that their teenagers ‘were the same way’ when they were infants, maybe easily frustrated or easy to comfort, restless or relaxed.
In Franklin’s life, I had become about the only person he opened up to.  It was a great privilege and he deserved more than facile answers.  I told him once that I would always be honest with him.  I said, “No, I don’t think it will get much better.”  I don’t know if this was what he wanted to hear.  If I had sounded upbeat and tried to assure him that it was going to get better, would he have believed me?  How long would he give that prediction to unfold if it didn’t get better?  I suspect he expected the easy answer, ‘I don’t know.’ 
Though this was my best professional assessment, rolled into a single No, it wasn’t the whole truth, either.  Dealing with some of the most difficulty kids, I can say confidently that even when we can’t change the difficult child, we can change how we understand them and deal with them in ways that make those interactions much less frustrating.  This increasingly educated and empathic approach often helps a lot in reducing the number and intensity of explosions.  In Franklin’s case, I found myself with a type of role reversal.  I told him what I often tell parents of particularly problematic kids.  Pick your battles carefully.  If you know that something will provoke an explosion, then whose fault is it when the inevitable happens?

Change your expectations of them, and that will cause you to change your expectations for yourself.  Be the grown-up.

I reviewed with him the situations most likely to cause battles.  I asked him the same questions I ask parents of difficult children.  What was your last fight about?  Did you win?  If you did, was it worth it?  Did the child learn a lesson and now won’t do that ever again?  (The answer is always no, by the way.)  Do you feel good about it?  Does the child feel good about you because of it?  I ask the same follow-up questions if they say they didn’t win the fight.  If it wasn’t worth it, if nothing was learned or gained by it, would you like to do it again?  If not, then don’t fight about it.  It takes two to make an argument.  Be the grown-up, be the first to walk away and say you’re sorry.  You may lose a fight but gain a child.  Maybe these parents have already lost Franklin.  But I have to help him make the most of the goodness inside him.  What do I call this advice?  It's not parenting.  Is it childing?

The Latin proverb at the top of the page means The wolf changes his coat, not his disposition.  Readers need only look as far as their own aging parents.  Are they very different from when you were a kid?  Do they treat you or talk to you so much differently?




On another note, have you taken my survey yet?  I know all the questions seem similar, but they're not.  I'm trying to find out how to compose a committee at the hospital, or maybe designate a person, who you would have make decisions for your loved one--your parent, your child, maybe you--who cannot make decisions for themselves.  Sure, you may have made all kinds of thoughtful arrangements, but what if they can't get in touch with you?  What if they can't even get information about this loved one?  Scary stuff, I know.  But several times a year, the hospital's doctors find themselves in this predicament.  Take the survey, and help.

Worst Possible Scenario Survey

This post isn’t just about pediatrics, it’s about a practical problem.  I don’t know the answer, so I need the help of my readers.  That means you.

Phyllis, 88, is brought to the hospital, via the Emergency Room, acutely ill.  No one at the hospital knows her personally, and the person can’t, for various reasons, help to identify who she designates as a decision-maker for her care.  She is not able to help with this crucial information.  Somebody in this circumstance is unlikely to be able to consent to certain aspects of their own care.  If she is not competent to designate a surrogate, it’s hard to imagine her being competent to consent to a complex procedure.

Let me clarify some assumptions.  The good people at the hospital don’t wait around for Phyllis's neer-do-well adult daughter (too close to home?) to call back from the spa before they perform CPR.  They have established protocols for life-saving interventions.  If you can’t tell them what you want, they will try to err on the side of keeping you going.  It’s reasonable to assume, in my experience, that the strangers who work at the hospital--even the ones with poor bedside manners and weak social skills--don’t mean you any harm and want to help you the best way they know how.  Yes, the courts can always appoint someone.  But that could take days or weeks, and would you be happier with who gets assigned to you get that way?

Maybe you don’t think this applies to you, and maybe you’re right.  Maybe you carry your living will or advanced healthcare directives, signed and notarized, next to your body everywhere you go.  Maybe it’s a long (usually several typed pages) tattoo.  But avoid it though we mostly do, any of us could be in this scenario.  Certainly, our aging parents could be.  And though I don’t like to bring it up, a child could be.

But I’m not asking about the immediate needs.  If you need an IV, they give you an IV.  But this is about the worst case scenario, not just a bad case.  Does your mother want to undergo an agonizing series of procedures to provide a possible but not guaranteed few extra weeks?  What about another round of chemotherapy when 4 awful previous trials didn’t help?  What about life support--would she want mechanical breathing, external heart or kidneys?  Under what circumstances yes or no?

I have written before about problems in medical ethics, and complained about ethicists who seem obsessed with these rare cases.  But this is a purely practical question.  I visit my mother every week—what would I want for her?

In the ethics discussion, I learned that this is pretty rare.  Though many people don’t have advanced directives, most have some connections to family or others who can help.  But several times a year, somebody like Phyllis is in the ER--very sick, not able to make her own decisions, not able to designate somebody to help with this serious decisions.  There isn’t one right answer of who, under these circumstances, should get this responsibility for, in essence, a stranger.  Who would you want?  Who would you want for your parent (the one you like)?  Who would you want for your child?

Here are some choices:

• The doctor on duty should do it.  She or he is a pro and knows what’s best.
• A small committee of experienced care providers should make these decisions.  The group would consist of a doctor, nurse, social worker.
• A diverse committee should make these decisions.  This group has care providers like a doctor, nurse, and social worker, but would also include a layperson from the community, maybe a religious leader from the community.
• A group of people with ethics experience who are extra careful not to impose their own biases onto this stranger.
• It’s important that the people on the case NOT be directly involved in my care.  That way, they won’t push their own departments or pet procedures.  Maybe they will have a little better overall perspective on the risks and benefits of interventions.
• Regular community doctors should be involved, since they have the most personal connections to patients facing these serious decisions.
• Specialist physicians should be involved, such as intensive-care specialists or surgeons, since they have the most expert knowledge of the interventions that might be decided upon.
• Doctors shouldn’t be involved.  Consulted for their expertise, but I’d prefer regular people like me to make decisions for me.
  The hospital should assign somebody, or a small group of people, to look out for me during my whole stay.  That way, this person or group would get to know my case and have a consistent approach.

Here’s how most hospitals handle this, by the way.  They make up a rule.  Sometimes their Ethics Committee makes up a rule, sometimes some other group or executive.  Then everybody follows the rule.  As far as I know (granted, not that far) nobody actually asks potential patients.  That’s you.  DO THE SURVEY!  It’s short. 

For the record, I don’t know the answer to this problem.  This is one of the scenarios, by the way, that seem complex and subtle to my adult-medicine colleagues.  Yet every child is this patient—not able to give consent, not able to designate somebody.  We think of children as part of a package, which includes a family or caretaking adult.  What happens when only the child part of the package shows up?  Please help me figure this out and DO THE SURVEY.



The photo above, from my collection, is by Helen Levitt from 1942.  I think it’s really funny, and is thus appropriate as therapeutic relief for this blog post.

The Ethics of Vaccination, Part 1

In the unstudied ethics of primary-care pediatrics, is the particularly dark and unexplored corner of vaccination.

As my readers know, I suspect that ethicists suffer from Perimortal Obsession and the natural desire to be quoted in the media commenting on the latest rara avis of medical dilemmas.  But this alone doesn’t explain why this topic is so carefully avoided.  As I’ve pointed out again and again, the common ethical problems encountered in primary-care medicine every day are apparently unattractive subjects for professional academic ethicists.

There are several important ethical issues that apply to childhood vaccination as we do it here in the United States.  Each of these is worthy of a symposium of its own, but I’ll just list these as they come to mind, and put them here on the internet for all to see.  Maybe an ethicist (who already has tenure) will dare to pick up the gauntlet.  In fact, this is just a prologue to an ethical issue associated with vaccination that only presented itself to me a few weeks ago.  The rest of this list has been smoldering for a long time.  I should note for the record that I believe childhood vaccination to be the greatest breakthrough in pediatric health ever made.  I discourage parents who choose not to vaccinate their children from joining my practice (that’s a big topic on its own!).  So these ethical issues assume a priori that the usual vaccinations we give are safe and effective.

The keystone ethical problem in pediatrics is doing something to somebody who is not giving their consent.  A lot of the general parenting problems I get asked about fall into this category as well.  Often parents will be unaware of their conflict between doing what they know is best for the child and doing what the child likes.  Broccoli vs.. ice cream.  Bedtime vs.. staying up.  This is one of the hardest parts of any good parent’s job.  But can we justify vaccination ethically on this basis?

What is the ethical obligation of the parents to other parents, to the community as a whole.  Even if we concede that parents sometimes have a sucky job and have to make decisions that hurt their baby because the baby will be better for it, should they hurt their baby in order to help some other baby?  This is just what herd immunity is all about.  At what point, ethically and epidemiologically, is there a breakeven between the suffering of one child and an abstract public health benefit?

Notwithstanding the vaccinations that are ‘required’ for school entry, what should the ethical guidelines be that determine how a parent chooses to waive these requirements.  Here in California, you don’t need to prove anything or claim anything.  Just that you sign the following statement: 

I hereby request exemption of the child, named in the front, from the immunization requirements for school/child care center entry because these immunizations are contrary to my beliefs. I understand that in case of an outbreak of any of these diseases, the child may be temporarily excluded from school for his/her protection.

It’s pretty shocking to me, honestly, that the serious consequence warned of in the statement is that your kid may be asked to stay home for a few days.  Considering the overwhelming statistical likelihood that any outbreak of one of these vaccine-preventable diseases probably started with an unvaccinated child, it’s curious and disappointing to know that the parent is being warned neither of the potential for harm their child represents to everybody else, nor of the potential for death or serious illness with life-long injuries that they have chosen for their own child.


I believe that physicians must give honest answers to patients.  That’s not an ethical problem.  But I am often asked if a baby really needs polio vaccine.  I give an honest answer:  it’s still around in certain parts of the world, but not here in the United States; it’s a really, really bad thing to get, and cause permanent disability; it seems to be preventable with the vaccine; a polio vaccine has been used for about 50 years, and the problems with it have been few.  But do they need to get the shot?   There’s plenty of cases of Japanese Encephalitis in the world, and there’s a vaccine for it.  But people get in in South Central to East Asia.  If you’re traveling to Borneo, it’s probably a good idea to get the vaccine.  But kids here probably don’t need it, so they aren't required to get it.  Polio is much less widespread in the world (thanks to vaccination) than Japanese Encephalitis, and there are no cases in North or South America.  If the parents take the child to certain parts of Africa or Central Asia, it’s probably important to be vaccinated.  Yet kids here are required to get 4 or 5 shots of it.

I get a lot of similar questions about Hepatitis B vaccine, which is often given within 1/2 hour of birth.  It’s spread, generally, by tainted blood products, sharing needles and syringes, and intimate contact.  So even a cautious parent would be right to suppose their child won’t be at risk until adolescence.  I don’t think this argument holds up, by the way, though it’s right as far as it goes.  What isn’t considered are the accidents, the hypodermic needle your happy 2-year-old brings over to you in the park to show you what she’s found, the thing your kid picked up that turned out to have some unidentified blood on it.

Is it ethical to give some vaccines in infancy just to take advantage of a time when the patient can put up the least resistance and won’t remember the assault?  Should we wait until they can willingly participate—though we know that almost none of them would?  Is it ethical to give an adult patient a medication that causes anterograde amnesia, then do something unpleasant to them?  They suffer just the same, but they don’t remember it afterward.  Is that the same as not suffering?  This is common practice, by the way for procedures like endoscopy (from either end).  Somehow not remembering the pain and choking during the procedure is considered equivalent to not having any pain.

There's a deep ethical inconsistency with this belief.  If the patient is not able to give consent (they have a serious developmental delay, they have brain damage or severe mental illness, for example)  would we allow a painful procedure without pain control measures?  I think and hope this would be considered barbaric and potentially license-losing for the physician.  In what functional way, exactly, is this hypothetical severely-impaired person different from a 12-month-old?  Maybe none of these hypothetical patients will remember the procedure.  Why is this not OK, yet doing pretty much the same thing on an adult who is drugged not to remember the procedure (same pain, same outcome) is a cottage industry?  I'm not questioning the benificence of the parent or medical guardian involved.  The difference, of course, is the adult's ability to be informed about the pain and the drug and the amnesia, and to consent to it.  (The fact that laypeople consent to such a procedure is no testimony for it.  Remember that virtually no insurance companies will pay for second opinions.  Besides, what incentive is there for the proceduralist to innovate new and less painful ways to practice?)

There’s a little bit of new research which suggests that babies may indeed remember the pain of vaccination.  Even if they don't, it's not a strong enough ethical argument to claim that the baby won't remember the pain of the shots. It's painful, they don't consent.


Perhaps it's a universal truth that so many issues eventually touch upon money.  It is a mystery to me why palliation is so often difficult for insurers.  Surely pain is something that binds us together as humans.  Is it ethical not to use devices or techniques which can make vaccination less painful?  These do exist, but they cost real money.  Given the thin margins on vaccines for most physicians, use of these products could make the doctor lose money on every shot.  Do they have an ethical obligation to pay for the privilege of giving vaccinations?  Do insurers have an ethical obligation (oxymoronic, I admit) to pay for things that reduce the pain of vaccination?  Or is that a lifestyle choice?  I think it's worth a post of its own.

The Ethics of Intervention

I received a note from a parent:
I am wondering if you had any thoughts on developmental optometry. My daughter has a severe learning disability and several people have suggested looking into visual training combined with behavioral therapy. She is an effusive and happy kid who seems to have potential but there are multiple issues such as ADD, auditory processing and visual perception which have left major gaps in her development. Sorry for the out of the blue query, but I'm only interested in talking to people who I know think outside the conventional. Have plenty of those voices.

This is what I wrote back, about a week later:

In a blog post from about 6 months ago, I describe a process of making a diagnosis of a rare disease from a set of common symptoms.  I repeat the maxim that if it walks like a duck, quacks like a duck, it's almost certainly a duck.  For many diagnoses, this circumstantial evidence is all we ever get.  For many important diagnoses, there is no definitive test, no reagent that turns blue, no antibody that clumps.  Just a set of circumstances that only when taken together constellate into an ominous cloud.

Of course, in my current profession I describe this phenomenon in the cloak of medical diagnosis.  I’m sure that jurisprudence and John Grisham novels are filled with innocent people cornered by circumstantial evidence.  But circumstantial evidence is how we naturally categorize the world.  It’s why we back away from barking dogs (“Oh she’s just a puppy,” the oblivious owner seems always to say as they restrain the bloodthirsty beast with a chain previously used on the anchor of a battleship), and think twice before lending Uncle Dave the money he wants for his can’t-miss real-estate development in Arizona.

I have an unusually large number of patients with autism of many varieties.  The genesis of this is simple enough.  Even the kids who are the most reluctant to see the doctor seem to be OK with me.  That I get along with these sometimes difficult kids isn’t lost on the parents.  The autism community is relatively communicative, and word-of-mouth has brought many of these families to me.  All of these parents have had to change their entire view of their own lives and plans.  And I never fault them for seeking explanations everywhere and seeking hope anywhere it is offered.

Regular readers of my blog you should know that I am getting somewhere with all this, though it may seem like I’m taking the scenic route.  Hey, you get what you pay for.

The last prologue comes from what I used to do for a living, 25 years ago.  Ironically, that has repercussions in current events though not in my own life.  I was in that very first crop of analytically-skilled people on Wall Street.  Though my very first task was computer programming, I had a very intuitive and creative view of theoretical finance and an ability to model things quantitatively that were hard to understand in words.  I did some of the first work on options on futures, then options on currencies, then options on mortgages and then things got really exotic.  It was fun and interesting work.  Though we didn’t have the term at the time, it was the very beginning of what are today called derivatives.  (Don’t worry—it’s the scenic route, not a dead end.)  Here’s how derivatives really work[ed].  By inventing unique financial instruments, the inventor is the only source of typically complex analysis by which a proposed buyer can evaluate that investment.  Think of it this way.  Your jeweler shows you a certificate which attests to their being a licensed appraiser.  She gives you an official form with a seal that says that she appraises a certain diamond at $5,000.  She then offers to sell you that very diamond for $4000.  So is she losing money on the deal?  If you buy it for $4k, will you be able to sell it for the same amount?  This diamond example doesn’t pass the test of daily experience, and we know (circumstantially) that there’s a sometimes yawning chasm between wholesale and retail prices.  We used to call it the bid-ask spread.  But with a diamond, you could presumably take it to another appraiser and yet another, who aren’t trying to sell you anything.  With complex and new derivatives, only the seller had the definitive valuation model.  In short, it was never clear what, if anything, those institutional investors could get for the things if they ever wanted to sell them.  Worse, it has become clear that they nearly always didn’t fully understand what they were getting.  I now know better than to refer a child to certain Ear-Nose-and-Throat doctors unless I have already decided they need to have their tonsils out.  Because everybody I send over there gets told they need to have their tonsils out.  I’m in no position to recommend otherwise, since they are the experts.  But somewhere there’s a very happy BMW salesman.  The corruptive power of conflicts-of-interest in medicine has been well studied and documented.  But, in my humble opinion, it’s like the old joke:  why does a dog...?Because he can.  As long as physicians were allowed to own their own pharmacies, they prescribed more.  When they owned in-house x-rays (as many orthopedists do), everybody was needing x-rays.  There was always an intellectually-justifiable therapeutic or diagnostic rationale for the intervention.  And funding for skeptical research (‘outcomes’ research) was hard to come by since peer-review was communally infected.  Eventually, some has been done and the two examples I cite, pharmacies and x-rays, are now rare.  Except for dentists and orthopedists.  And podiatrists.  And don’t get me started about chiropractic.

So this leads me to the 30 or so hours of research I did on developmental optometry.

1. I couldn’t find any evidence—none—that it worked for any of the problems for which it appears usually to be prescribed, with the possible exception of unambiguous vision problems, and these are treated conventionally (and effectively).
   
2. Kids with eye and/or vision problems often have problems in school, for obvious reasons.  These difficulties, just like school difficulties from any other cause, certainly can lead to a cascade of problems which can be difficult to tease out from the germinating cause.  It saddens me when I find kids in remedial reading that simply needed glasses, or when I’m asked to do an ADHD or behavioral evaluation on a child who’s bored in class because they can’t see what the teacher is writing.  Since I do so much work with kids who have ADHD or problems that look like it, I have documented many cases (some are in the blog) of children with attention problems caused by everything from anxiety to itching.
3. All the favorable evidence that appears most bona-fide, passing itself off as peer-reviewed unbiased medical research, is by practitioners who either are or claim to be believers in the usefulness of the intervention.  They sell the intervention.  Yes, I am keenly aware that the same is true for most of the difficult-to-duplicate medical interventions such as surgeries.  Indeed, that’s why it is still unclear whether coronary bypass surgery (done by heart surgeons) is superior to angioplasty (done by interventional radiologists or cardiologists).  Everybody who can do the research which just might show the inferiority of their approach makes an outrageous living from it.  So I’m not putting down the poor optometrists, who since the advent of internet contact lenses and no-prescription reading glasses have found themselves disintermediated from the high-margin businesses they used to be in.  They are just looking for their own piece of the pie.  In many ways, much of the published research I looked at reminded me of things I have read in the New England Journal of Medicine from 100 years ago.  Logical, convincing, completely supported by entrenched conventional wisdom and proven by anecdote.  (The ‘alternative’ autism treatments are often like this.)
4. Maybe it’s my obvious skepticism, but I’ll come back to that joke about dog behavior.  Even the professional sites seemed designed less to remediate an underdiagnosed public-health menace than to drum up business.  Particularly shocking to me are sites like this.  I used to give a lecture every year at UC Berkeley about ADHD, and one of the slides I showed was a self-diagnosis test for adult ADHD taken from a website.  When the students took the test, just about everybody qualified as having ADHD.  According to this test, “If your child’s total score is more than 20, [there’s] an 80% chance of having a vision problem that is interfering with learning.”  It was easy to get to 20 if your child has the following:  doesn’t like reading or writing; has itchy eyes; has a hard time finishing assignments on time; gives up easily; is clumsy; homework takes too long; daydreams; or gets in trouble for being off-task at school.  The site has a search engine which offers to find an optometrist who is a member of this group. 
5. Though I worry about families getting sold false promises, and paying for certain unproven services, I found no evidence of direct harm caused by these interventions.  I haven’t left my MBA at the door, however, and besides the conflict-of-interest issues it increases my suspicion enormously to have learned that developmental optometrists often request visits weekly or even more often than that.  For months.  So just as for chiropractic, I can’t help but be left wondering what exactly are the criteria for claiming success?  When do you decide this isn’t working?  Whenever you stop, will the practitioner always say that improvement was just around the corner but you are to blame for the failure because you didn’t stick with it?  Is there a test on which you child will score higher after the intervention?  Does the test correlate with anything important in your child’s life or simply validate the intervention?  
6. As a doctor who diagnoses and treats kids with complex tangles of dysfunction, I worry a lot about the ‘collateral damage.’  This is the inadvertent damage you do to the child and to your own relationship with the child while trying to help them.  Surgery may save you, but it doesn’t come without pain and lifelong scars.  Bringing the child to a doctor every week gives them an unambiguous message that there’s something wrong with them.  They better improve, because if they don’t they will lose hope in their own recovery.  They internalize your belief and the doctor’s belief (or sales pitch) that they have a serious problem that needs to be fixed.  If they don’t see results they can become hopeless and guilty.  They can believe that they are imperfect in your eyes for having the problem and that they have failed you by not improving with the treatment you make them participate in.  Once the child has taken on the role of the sick child, how will you convince her that she’s better?  With my patients, I take a lot of time—often more than an hour—to talk to the child about this.  Do they think there’s something wrong?  Does she think that Daddy is disappointed in her?  Does he want her to be something she’s not or achieve something she thinks she can’t?
7. And of course, there’s a serious opportunity cost.  I saw, this year, a 15-year old with untreated ADHD.  ( part 1 and part 2.)  The longer his parents went without getting him conventional—and heavily proven—treatment for his conventional problem, the longer he stayed failing at school and the more depressed he became.  This wasn’t going to end well.  There are many vague but serious problems along both the autistic and learning-disability spectra.  Your child might not fit into a recognizable unifying diagnosis.  This ambiguity tends to increase anxiety.  But there are many available methods for helping a specific problem, such as reading problems.  (I usually insist that kids having learning problems get their vision and hearing checked thoroughly.)  So choosing one intervention might additionally cost precious time catching up with a professional reading tutor.

Here’s my various bottom lines, based mostly on my training in physics:  break problems you can’t solve into smaller problems you can solve.  And I started this with, ‘if it walks like a duck....’

• Developmental Optometry doesn’t pass my whiff test.  The only people who support it are those who sell it.  Testimony from desperate parents, sadly, is not enough for me.
• I don’t know what your child’s learning/reading issues might be, but these are heavily studied and though no one intervention works for everybody, there’s usually something available that can help. (Best reference ever:  Sally Shaywitz’s book on dyslexia (see also)).
• I’m fiercely protective of my patients.  Even what appear to be benign interventions can have long-lasting and chaotic implications in the most butterfly-effect kind of way.  Doing nothing, on the other hand, isn’t necessarily better.  Gosh, that doesn’t seem to be helpful.
• There is no such thing as alternative medicine.  There are only tested things and untested things.  I met you a couple of times.  You probably won’t meet a Developmental Optometrist who’s smarter than you are.  So decide for yourself.  Do your own research.  Ask what their training is, how many ‘sessions’ it’s going to take, and how you’ll be able to tell if it’s working.  Ask what happens if it doesn’t help by 6 weeks or 6 months.  (Well managed ADHD medication, prescribed appropriately, makes an obvious improvement within days, sometimes hours.)
• For heaven’s sake, get a second, independent, diagnostic eye exam.  Don’t mention this intervention.  Go to an ophthalmologist and get her a thorough eye/vision test.  If this evaluation is materially discrepant from that of the developmental optometrist (no matter what they recommend for therapy), get yet another independent evaluation.  Remember that a diagnosis is not the same as a treatment.

How did I do?  I hope you didn’t expect a thumbs up or down.  My critical take on this is not because I’m dogmatic—I have the same hesitations about a lot of traditional interventions by a lot of high-powered interventional specialists.  It seems I often end up after one of these obsessive patient-centered-research jags chanting some combination of ‘Show me the money!’ and ‘Show me the chakra!’

I will help in any way that I can.

Wolffe