Vaccine Refusal and Ethical Issues

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Anxiety--College Boy and Autonomy Issues

bart-map

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


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


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


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


"None, really."


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


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


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


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


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


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


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


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


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


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


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


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


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

handicapped sign

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


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


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


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


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


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


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


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


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


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


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


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


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


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