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?

The Human Pacifier, Part 3

It would be great to have a definitive diagnosis, and know for sure why 5-month-old Andy was waking up every hour. Whatever the reason, it was torturing his mother. And that's not going be a sustainable, optimal environment for Andy.

In this case, it would be a luxury to examine every tree, but I had to see the whole forest, and it was on fire. Sure, the care that most families would get probably wouldn't include trying to fix these problems, and probably wouldn't include even looking for these problems. It just takes too much time. But that's not who I am and not how I practice. And it's not the best thing for the patient.

So I decided not to try the many possible interventions in series, one after another, in a way that would eventually yield a diagnosis and medical approach to the problem. This family needed my help right away, and they couldn't wait around, trying one thing or another just so I could claim a diagnosis. I explained this to them, and they seemed relieved. I suggested doing everything at once. Hopefully, something will work. Once the problem is fixed, we could, if desired, peel back the interventions layer by layer as if an onion. Perhaps in this way, we could arise at some diagnostic insight but not wake up the sleeping baby.

First, let's establish a transition object. The transition is a fairly nonspecific one—perhaps between wake and sleep, or from being held by mommy to not being held by mommy, or maybe between a sense of security and insecurity. Sometimes it's called a security blanket. The most well known, perhaps, is that of Linus, created by Charles Schultz. I suggested that the parents get a baby blanket like those used in the hospital nursery: soft flannel, but nothing fancy, hand-knit, family-heirloom, or large. A hand-towel or even a washcloth will do. Every time the mother nurses the baby, she needs to hold this between the baby's body and her own. It will pick up her scent, breast milk, sweat, and the baby's drool, spit-up, and scent. This too, has been studied. Even babies just a few weeks old can recognize the scent of their own mothers. Whenever the baby is being put to sleep, even if in a parent's arms, the cloth has to be there. Maybe, at those shallow levels of sleep, the sensory feedback gently provided by this transition object will be just the reassurance necessary to send him back to a deeper level of sleep.

I told them to bite the bullet and put the baby in the other room. Yes, get rid of the co-sleeper. Every time the baby is getting to a shallow sleep level, he smells fresh muffins and needs his mother to provide them. I want her to be available to comfort him if needed (this is NOT about crying-it-out), but I want him to work a little harder for it. If you are just barely awake and smell the fresh muffins baking, vs. just barely awake but have to get dressed and drive to the muffin shop. Either way, you get your muffins. But I bet you sleep a little longer if you have to go to the store. I expect that changing his pattern of sleep/wake will not be easy at first. I didn't suggest letting him go cold turkey on this. That's what the transition object is for. How much worse can it get?

The removal of the infant into the other room, I hope, will enable mother to miss some of those subtle vocal cues that she has been conditioned to hear and cause her awakening. Maybe if she's not hearing the baby talk in his sleep, she won't have to wake up unless he really wakes up. And both she and the baby know that he's not really eating all through the night. The nursing for 1-2 minutes is not long enough for a nutritive meal. It's for brief comfort.

The baby's eczema must be treated. I prescribed some lotion with a very weak steroid in it to use on the dry patches and on the dry patch on his scalp. Hopefully, this will relieve the baby's itch and let him sleep better and longer.

If the baby has heartburn, which seems consistent with some observations of the parents, he's not going to like being put down flat, and he'll be harder to comfort and may not sleep as well. We know he seems to sleep better in the swing than in his crib. Why not let him sleep in the swing? I also suggested they let him sleep in the car seat. This will keep him in a much more upright posture (adults with heartburn often sleep with a lot of pillows or with the head of their bed propped up) and keeps him securely snug. I cautioned them not to put the car seat on a table, bed, or any other surface. If they put him to sleep in one, it needs to be on the floor. Even gentle movement of the baby can cause most car seats to move across a surface and fall to the floor.

And if this is reflux, why not treat it? I prescribed some first-line antacid medication. I don't like putting babies or anyone else on medication, but sometimes you have to keep your eyes on the prize, which is helping the baby feel comfortable enough to sleep through the night. My job is not to minimize medication. My job is to make the baby's life better.

I had an assignment for dad, too. I told him that life is tough all over, and he was going to have to pitch in. I wanted him to take the middle-of-the-night feeding if there was one. If not, he would have to take the first feeding of the morning. The baby might indeed get hungry in the wee hours with the new regimen of comforting the baby without nursing every hour. Mom has plenty of pumped milk and the baby will take a bottle. So dad is going to get the big feeding while mom is going to get what I hoped would be at least 4 hours of uninterrupted sleep.

Lastly, they needed to establish a rock-solid bedtime routine. Doctors who treat insomnia note that the overwhelming majority of their adult patients have poor sleep hygiene. That means that they have the TV on, that sometimes they go to bet at 10, sometimes at 2. Maybe they sometimes eat before bed, sometimes not. People of every age respond to the ritualization of sleep, and the establishment of sleep cues. I suggested that every night at their chosen baby bedtime, they have the exact same routine. It might start with turning off most of the lights, then giving the baby a bath. Then they put on a fresh diaper, mother sings him a song while nursing, then more lights go off, then he is put in the crib in the other room (or the swing/car seat as above). With his transition object.

They're coming back in a few weeks. I don't know what has been working or not. When I do, I will post Part 4.

Buckle Up for Safety

Have you ever thought about bike helmets? No, seriously. What do they do? Do they work? Are they effective? Yes, I’m going somewhere with this.

First, the facts. Bike helmets reduce serious head injuries in people who have bike accidents. Obviously, they don’t eliminate the possibility of a serious head injury, they just reduce the likelihood of having one. Yet people wearing helmets can die in bike accidents. If you think about it, imagining reasons this could happen isn’t very difficult. The energy of a car or truck hitting a person on a bicycle is likely to overwhelm the protective power of a helmet. When I lived in Utah, I remember a case of somebody unintentionally mountain-biking off a cliff. But most bike accidents occur because the front wheel catches a rock or a curb, or gets caught in a street drain. It’s in these most common accidents that the helmet makes the most difference, potentially changing the outcome of these common accidents from uncomfortable scrapes to seriously life-altering.

So good parents will insist on their children wearing bike helmets. Better parents will make sure they fit right. Insane parents will make the kid wear the helmet to bed.

So it confuses me when I see a parent and child bicycling together (I love seeing that! Good exercise and fun with the kid!) and the child is wearing a helmet but the parent is not.

Nobody wants or anticipates an accident. That’s why they’re called accidents. Being a good, experienced, adult bicyclist does not protect you from a head injury. Wearing a helmet does. So picture the following scenarios. The child goes over the handlebars--parent stops, assesses the situation, uses the cellphone or flags down some help as needed. The parent goes over the handlebars--who is looking after the child? Can the child summon help if needed? Will the child’s judgment about what to do have suboptimal implications for the injured parent? And then how well off will the child be?

A perspective empathic to the child leads to a conclusion that the child needs a helmet, but so does the parent. So when you go bicycling with your child, please wear a helmet--for the kid’s sake.

There are, of course, other examples of this kind of decision about the safety of the child. We put our children in car seats, though they are obviously restrictive and children often don’t like them. I’ll ask the same questions as I did for bike helmets. Did you research this yourself? Do they actually work? What, specifically , do they prevent? If your child complains about sitting in one, do you give in and let them climb from back seat to front or play in the back of the station wagon like I did over 40 years ago? Why don’t you? What made you believe? After all, you know that seat belts won’t always protect you, and that plenty of people are injured and killed in auto accidents who are wearing seatbelts. Even people who never met somebody who was in a horrible car crash wear seatbelts. At some point, they believed that they are safer. I remember seeing ads on TV about buckling up for safety. My sister and I had to pester our parents about wearing seatbelts--which didn’t retract and weren’t convenient back in the stone age. It took a lot of annoying before they regularly did it just to shut us up. I wonder why they were so resistant to doing this, and I’m sad to say I have missed my chance to ask them.

I don’t think reasonable people need absolute perfection to take advantage of these potentially life-saving technologies. Most of us know that putting on that bike helmet doesn’t eliminate our risk, it just cuts it down a lot. We should act on that to help protect our children. I don’t think that most readers who got this far will think my logic particularly controversial. When it comes to sitting in the car seat or wearing a bicycle helmet, the empathic parent does not negotiate with their child. It’s helmet on or no bicycling allowed.

When I read the tragic story about the unvaccinated baby in Minnesota who died of HIB disease--pretty much preventable with vaccine since 1988--I wondered what the parents had thought beforehand. Did they do their own research or did they take somebody’s word for it? Whose word? Who did they trust to guide them about the potential protection of their child from this deadly disease? What were their information sources to make this important decision? How authoritative is a web page? Did they research the vaccine? Did they research the disease it prevents (it’s a bad one)? Did they always put the baby in a car seat?

How to fit a bike helmet video.