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?

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.