 The panel that we're starting with today is the Crisis in Pediatric Immunization. I'm Laini Ross, one of the associate directors here at the McLean Center. Our first speaker is going to be Rick Kodish who is the F.J. O'Neill Professor and Chairman of the Department of Bioethics at the Cleveland Clinic Foundation and a professor of pediatrics at the Lerner College of Medicine of Case, Western Reserve University. Rick was here in Chicago doing both his He-Mong Fellowship as well as his Medical Ethics Fellowship and then he joined the staff of Rainbow Babies and Children's Hospital where he was the founding director of the Rainbow Center for Pediatric Ethics. His areas of expertise include childhood cancer and blood disorders, pediatric ethics, end-of-life issues, and research ethics. Today he's going to be talking about the problem with parental autonomy, implications for pediatric immunization. Really nice to be with you. I'm not sure there's a crisis in pediatric immunization. We were just talking about that a little bit. It's certainly a good name for a panel. There are some disturbing trends in pediatric immunization and I'm going to launch into a talk that will, I think in the first part, talk about some fundamental ways I think about pediatric ethics and then get to the issue of immunization around that and a lot of what I'm going to talk about focuses on language. I don't think I need to convince this audience that language matters in both an efferent and an afferent way. That is, language is a reflection of what we're thinking but even more importantly I think language affects how we think and just to start out with I would say that autonomous parents are not the same as parental autonomy. The latter term implies a lot of untoward consequences which I'll go through while the former is compatible with autonomy as exercised in one of many moral roles, the role of a parent. My barber Danny has autonomy to some degree in how he cuts my hair. He's got barber autonomy I guess but more importantly he's an autonomous barber. So we play these many roles in life, barber, parent, ethicist, you name it I think the language is important here in parental autonomy as language gets us confused from the perspective of moral psychology and I'll say more what I mean about that in a minute. The Academy of Pediatrics core value statement this year is really consistent for many years and the most important thing is that we believe in the inherent worth of all children they are our most enduring and vulnerable legacy and that's a core vision for me also I think as I think about pediatric ethics remembering that children are vulnerable and thinking about the legacy aspect of it. The principles of pediatric ethics are no different than the principles as articulated in the Belmont report and I tend to think that beneficence which is highlighted here is the dominant principle but certainly respect for persons is incredibly important in pediatric ethics and as you'll see as I go on I'm going to distinguish that from respect for autonomy or autonomy I think those are derivative from respect for persons. Another way of thinking about respect for persons if you sort of move from the philosophical to the theological is to take this phrase everybody is made in God's image right you guys have heard that phrase before everybody is made in God's image at a secular institution like the Cleveland Clinic where I work or like the University of Chicago that can be probably not a wise way to frame it but I think personally for me that captures something about respect for persons that I have trouble in philosophical language conveying to you why respect for persons is so important and certainly I buy into this idea that everybody is made in God's image but certainly all children I think we would agree if we have a theological perspective never met a child that I think is not made in God's image so this is a long way of saying respect for persons is important in pediatric ethics beneficence is arguably more important though and justice certainly will talk about some justice issues with regard to immunization problem of the free rider and that sort of thing so as I said I think what's happened historically is that autonomy or respect for persons has become the dominant principle for adult medical ethics beneficence has become the dominant principle for pediatric ethics the phrase the best interest of the child carries a lot of currency and resonance to refine it a little bit in these next two bullet points the concept of basic interests is I think preferable to best interest I think best interest is a bar too high and the harm principle which our colleague Doug DeGama has written about very eloquently I think in some ways is the converse of basic interest I'm not going to go into the harm principle in detail today for this analysis but wanted to be sure that I mentioned it so we move from respect for persons and beneficence to the operationalizing of that in informed consent and there's this very important difference which is going to relate to immunization between informed consent and parental permission the autonomous authorization of an adult on her own behalf for something is more ethically robust than parental permission for a child and the AAP again says the pediatricians responsibility to his or her patient exist independently of proxy desires or consents that second statement is very interesting when it comes to immunization a pediatricians obligation with regard to immunization is the parental desires are not primary it's about what's best for the kid so the problem of parental autonomy happens this way I think there's downstream consequences get back to this language the interests of children are put at risk because of the shift in thinking from questions of what's the right thing to do to a focus on who gets to decide and in our ethics practice at the clinic we do about 325 consults a year very busy busy practice and we've learned I think to help people focus on those two questions and toggling back and forth between who gets to decide what's the right thing to do and looking at each case to try to see the extent to which those two framework questions pertain so the downstream consequence of parental autonomy is it really focuses on who gets to decide substituted decision making which is a cornerstone of adult clinical ethics is of really limited help in pediatric ethics especially in this age group children younger than 5 before school that we're talking about with immunization the historical considerations arguably would say that we need an affirmative action kind of approach here and the parental autonomy is the wrong language to do that there's even a compensation model for past wrongs if we think of children as a class that says that children are not the property of their parents and we need to begin treating children in a way that is respectful of them and interested in protecting their interests so this does not imply a state sponsored takeover of proper parental authority I want to make clear that that's not what I'm saying here there's a latitude issue that I think is important there are some important a-words here and just quickly to go over them Dan and John Lantos published a paper recently on autonomy that I would recommend highly to you that talks about agency and authenticity has two sort of sub-components or ways of thinking about what autonomy really means but as someone interested in pediatric ethics I'm going to say autonomy is not that important really so I'm not going to spend time on that a I think authority is what's at issue here and parental authority with regard to the immunization decision and that latitude about how much latitude we give parents to accept or reject vaccination so I have no data in this slide except for this and I am an empiricist the source of all truth is Google I did a Google search based on the thing I learned at University of Chicago it's axiomatic that one cannot claim a right without attributing to someone else a corresponding responsibility I'm interested in responsibility and not just rights so parental rights on Google there were 199 million hits parental responsibility 5.3 million hits what does this say about the ethics of parenting in the age of Google I'm not sure I'll leave that for you to think about informed consent in pediatrics is kind of the wrong language too it's parental permission and assent to the child the recommended schedule for most childhood vaccines precludes a major role for assent so I'm not going to get into that component of it now permission is not the moral equivalent of informed consent because kids are not the property of their parents and I'm going to talk just for a minute about the clinical context the research context and the public health context because I think immunization belongs mostly in the public health context what's the proper obligation of parents in this public health context in the clinical context parental latitude is more constrained I would say in the research context because it's a super erogatory phenomena we give parents veto power in almost all cases but what about public health should public health concerns count in a parent's assessment of a risk-benefit ratio that they're doing regarding immunization and I would say that a responsible parent with appropriate education should decide in favor of vaccination without a need to invoke that public health benefit so it's kind of a moot point if the safety profile of the vaccine is good it's low risk and high benefit to the child the public health concerns don't need to come in it's almost like a piling on that a pediatrician could do if she wanted to in framing the risk-benefit balance so what are some of the factors to consider with immunization the safety profile as I mentioned each vaccine is different and I want to stipulate here that this is not a talk about the specifics of different vaccines each one is different but in general the safety profiles are excellent the risk of acquiring infection at any particular time depends on the prevalence of immunization in the community and the prevalence of the infection in the community the severity of the infection involved I saw kids die of age flu meningitis when I was training here in Chicago bad disease, immunization has wiped it out we don't see it anymore but I think we're going to start to see new outbreaks of diseases and the younger pediatricians who have never seen diseases are going to start to see them and that's going to change how they talk to parents about these issues the reason for parental refusal may or may not be important I don't want to weigh in on that but maybe on the panel we can talk about that I think it's an interesting question and changes in these and other factors could alter the risk-benefit analysis parental refusal of therapy I think I ripped this off from John Lantos at one point if it looks familiar John age matters the rule of sevens kind of thing here acuity matters you have time to negotiate about something or not morbidity and mortality both matter parental reasons in refusal to therapy may not matter but immunization I would argue we probably don't want to think of it as therapy it's a public health intervention it's a prevention and not a treatment so what is a good pediatrician to do I'm going to wrap it up here I think there are three approaches there's a hard line approach which says you cannot be in my practice if you do not immunize your child there's a parental autonomy approach which says it's their decision it's not mine to make they're fine and then there's the middle road which I advocate and it says good pediatricians should coax cajole patiently persuade do not coerce and importantly educate parents about these issues to counter much of the nonsense that's out there on the internet educate parents about the benefit to their own child educate parents about benefits to other children educate them about benefits to society and give them honest data about the risk I would highly recommend to you the academy's clinical report on responding to parental refusals of immunization I was privileged to be on the committee when the work was started and Doug Deacon again took the lead I think on this it provides very practical guidance it emphasizes responsibilities and relationships not rights and it reiterates the AAP supportive immunization requirement for school entry very important one one minute alright gonna be done on time so conclusions pediatricians should advocate for the health of both individual children and for children as a class and I think we'll be talking more about that as the panel goes on I think parental autonomy is not a good basis for accepting immunization refusal but prudence suggests that the wise pediatrician pick her battles carefully and in most situations it makes sense to be patient to invest in strengthening the clinical relationship with the child and patients trying to keep your eye on the ball thank you