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. Sometimes, 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?

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?  What about Malaysians of Chinese descent?

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. It 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 of their family 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 to qualify for a checkbox of ethnic identity? 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 doctors should have 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 if they relate better to a Dominican than a Californian? 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.

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 patients 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?  The one that shares your background/language/heritage or the one who listens to you, does a great job, and doesn't rip you off?

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.




The photograph from my collection is by Keith Carter and is titled, "George Washington."

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 know 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.  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 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 would have fallen back on that dependable standard.  But he wasn’t really asking me for a prediction, such as the 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 an accurate ‘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 life and from the families I have known 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 this way, personalities can be surprisingly stable.

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 difficult 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 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.

In Franklin's case, I counseled him to play the grown-up.  I suggested that he try to predict what the battles will be about, and decide carefully if they will be worth it.  I'm hoping that just having a plan will empower him and help to stabilize his relationship with his parents.

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?

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.

Problems with Medical Ethics: The Elephant

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

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

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

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

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

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

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

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

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

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

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

Problems with Medical Ethics: Holistic Ethics

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

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

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

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

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

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

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

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

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

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

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

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

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

Problems with Medical Ethics: Man in the Mirror

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

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

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

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

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

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

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

That’s not good enough.

It's the money, stupid.

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

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

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

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

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

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

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

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

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

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

Problems with Medical Ethics: Recruiting

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

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

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

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

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

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

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

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

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

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

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

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

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