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PAS Ethics SIG ethics essay contest winners1st PlaceBy Ashley Treece, Pediatric Resident, PGY2Oregon Health and Sciences UniversityFor LifeDeath: it is the final act in which we all play. It is dreadful, because in the last tally everyoneloses, without a second chance. I hate death; I abhor the very finality and uncertainty of it. Nearly everyday I rotated through the Pediatric Intensive Care Unit I woke paralyzed with fear of who might die thatday: “Who next,” I thought, “What tragic story will I hear today?” Beyond doubt, death is the archenemyof medicine, the nemesis of every good doctor, the ultimate failure. The more I see of death, the more Iunderstand why we fight so gallantly to keep it at bay. It is hardest to give up on something you knowyou can never get back. Death is to be prevented at all costs.Though not stated explicitly, we as doctors follow this doctrine, more so in pediatrics than otherspecialties because no one wants to give up on a child. And while championing against death is a greatcause, I wonder if sometimes in the midst of that consuming battle we forget to examine and considerwhat we fight for: that being, of course, life.I think of an unfortunately familiar admission to the hospital: MRCP (correct nomenclature ornot, this is the acronym used meaning mental retardation cerebral palsy), G-tube, vent-dependent. Afterthese three descriptors, my heart sinks. I picture a lump of a person – dry, peeling lips with rotting teethand stale breath, staring with wide-open unseeing eyes, groaning about something that will never becommunicated, without any voluntary control of the body. But the heart still beats and the lungs stillexchange oxygen (with the help of a ventilator), so the child lives. This admission is for a commonenough chief complaint – feeding intolerance. I step into the room and hear the story from thecaretaker, trying to listen attentively for any clue that might help with the diagnosis. My mindimmediately catalogues the most severe diseases on the differential and how to rule them out, finding itmore challenging than caring for a baby because this patient gives no response, rather than the baby’ssame response to everything. I ask the caretakers how they know the patient is in pain (because I cannottell) and try to sort out this case with what little information I can gather, reckoning myself like SherlockHolmes enjoying the challenge of a good case. Indeed, an attending recently expounded to me the great

were told to, and because it was legal. As residents, we do the same. What if what we do now is akin towhat the Nazis did then – though on a much smaller scale? What if instead of wrongful death we arepracticing wrongful life?In our relativistic culture, ethics finds itself in a hard place. It is easy to become lost amongstdifferent truths, and easy to redefine right and wrong. As Arthur Leff argues in his paper “UnspeakableEthics 1 ,” without an “unjudged judge” to serve as evaluator, “everything is up for grabs.” Yet he alsorecognizes that some actions are wrong and there is no argument that can transcend this. Murderingchildren is evil. Torturing children is evil. I argue that not only is premature death wrong, but alsoostensibly extending physical life when the recipients of such well-meant practices have nothing to gainbut perfusion and ongoing oxygen exchange. The line between these two schools of thought is difficultto define and I do not claim to have the answer. In older patients with an acute problem, this distinctionis often easier to make; in infants with so much that can change (yet generally does not), it is moredifficult. Still, “support of organic life” alone is not generally believed to be “an overriding andindependent goal of medicine 2 .” Most certainly, families could use a more candid explanation ofprocedures and their lifelong implications earlier in the disease course, because in my experience theseconversations often occur when the family is already too committed to contemplate doing less. Asdoctors, we ought to be more familiar with what our goals are: not to heedlessly duel death with ourpatient trapped between us, but to thoughtfully propose and discuss what is in our patient’s bestinterest.Performing so many life-prolonging therapies on such children feels inhumane. The onlyendpoint I can offer at this time is based on how I would rather feel in these situations. Instead of anarchenemy, I would rather think of death in its appropriate time, in Tolkien’s words 3 , as man’s gift, thathe need no longer strive against the weariness of the world; and though never less sad, to be able toaccept death as a normal part of life. Looking at these children, I want to humanize them, to give themthe grace of making death okay. Instead of hopelessly fighting death, I want to give them back life.1. Leff, Arthur. "Unspeakable Ethics." Yale Law School Legal Scholarship Repository.HeinOnline, 1979. Web. Feb. 2013.2. Jonsen, Albert R., Mark Siegler, and William J. Winslade. "Quality of Life." Clinical Ethics: APractical Approach to Ethical Decisions in Clinical Medicine. New York: McGraw-Hill, HealthProfessions Division, 1998. 134. Print.3. Tolkien, J. R. R. The Silmarillion. Boston: Houghton Mifflin, 1977. Print.

A physician’s choice to dismiss a family from a practice over vaccination refusalprecariously balances beneficence, social justice, autonomy, and a sense of duty to the professionof medicine. Some pediatricians believe that refusal to follow medical advice represents a lackof trust in, and shared beliefs with, the physician (2). A pediatrician in Northwestern’sChildren’s Practice in Chicago recently told CBS This Morning, “If you don't believe in thefundamental thing we believe in, then you need to go somewhere else (4)." We should notminimize the importance of therapeutic and trusting relationships; however, some argue that theprincipal of beneficence requires us to help the patient and family by maintaining the relation. Inparticular, avoiding abandoning a child to either no or substandard medical care (5) and flirtingdangerously with maleficence.Social justice implies minimizing population risks and distributing benefits equitablyacross society; ethically unimmunized children ‘freeload’ by avoiding the risks of vaccines andtaking advantage of herd immunity provided by vaccinated peers (6). Yet unimmunized childrensurely benefit from the close and careful care of a pediatrician who appreciates their increasedrisk for serious, vaccine preventable illness. Dismissing a family may compromise the health ofthe children in that family in order to protect other infants in our waiting rooms. Maximizingbenefits and minimizing risks for young infants of compliant parents may reduce exposure tovaccine-preventable illnesses, but we know that even in a fully immunized population infants indoctors’ waiting rooms continue to be exposed to a myriad of non-vaccine preventablecommunicable diseases. In our waiting room – in Chicago at the intersection of Wisconsinpertussis and Indiana measles – our infant patients have a much higher risk of complicationsfrom RSV coughed across the play tables than from vaccine-preventable infections. We do and

should not refuse to see sick and potentially contagious children in the name of beneficencetowards even the youngest, most vulnerable infants.The practice of dismissing a family for refusing vaccination challenges the principal ofpatient/family autonomy. While young children have no autonomy by definition, we generallyassume their families act in their best interests and have a right to make informed decisions onbehalf of their children without undue influence. Frustrated physicians may use terms like“neglect” and “child endangerment” in talking about vaccine refusal; however, these familiestypically act out of attentive and fierce adherence to what they believe to be their child’s bestinterest. The more important ethical question is whether these families fulfill all of therequirements of informed consent and truly understand the risks and benefits of withholdingvaccination; if parents are mistaken or ill-informed then they may not be making authenticallyautonomous decisions. From a utilitarian view, one could argue that the threat of dismissal mayeffectively get some parents to vaccinate their children. One study showed that 10% of parentswho previously refused vaccines changed their minds when healthcare providers stated theywould dismiss the child if the family did not comply (7). However, such threats leave physicianslooking down a slippery slope toward unethical exercises in coercion.Vaccines are great advances of the last century and pediatricians can proudly claim anessential role in developing and disseminating these preventive tools. No doubt parents’vaccination refusal can feel like an affront to the core of pediatrics. When what we know to beright is challenged outright, we feel our blood rise and arguments fly toward the tips of ourtongues. However, we must remember refusing parents typically have human passions as well.We recently attended an informal lecture on how to handle vaccine refusal titled “Top 10Myths About Vaccination and How to Combat Them.” Combat them—do we really want to use

military language? We send residents into exam rooms “armed” with a litany of vaccine data.Feeling a little invincible, they march to do battle with “the myths” but come up against humannature and parental psychology. People, anecdotally parents in particular, hate to be told theirbeliefs are wrong. Many of us have seen a mother go stiff, arms crossed in defiance, and fiercelyglassy-eyed when pushed on the topic of vaccination. It is said that our opinions are solidified aswe defend them and therefore, the best way to win someone to your way of thinking is never tobegin an argument in the first place (8). We want families to move toward vaccinating andprotecting their children. Successful conversations require sympathy, patience, respect, andmore listening, at least at first, than lecturing. We must learn subtle and powerful persuasiveskills. When pediatricians dismiss families from practices for not following vaccinationrecommendations, it signals a failure to communicate adequately. Skillful conversations work; a2008 study reported that more than 35% of parents who decided to have their child immunizedafter previously refusing vaccines cited support as well as information received from theirhealthcare provider as reasons for changing their decision (7).Excellent communication skills are essential. We have laboratory assays andradiographic studies, but most agree a good history points to clinical conclusions more than 50tests. The fundamental groundwork for a good adolescent HEADDS screen, or a good asthmaaction plan, or a good ‘back-to-sleep’ discussion is good communication. Indeed, the AmericanBoard of Pediatrics lists “communication and collaboration” as one of the six principles ofprofessionalism that should be part of the core curriculum for pediatric residency training (9).We are a profession rooted in conversation, not dictates and mandates and threats, butconversation.

If we believe in the value of vaccination, we should consider that a family’s decision notto vaccinate reflects a failure of our professional responsibility to communicate effectively withthem. This perspective leads to an answer to the resident’s question “What do we do now?” If afamily refuses vaccination, we should listen, show respect, reassure, and through providingguidance, find a way to persuade. If we do not succeed, we should reflect on how ourcommunication efforts failed. If a child presents with a bacterial infection, we assess and thenlikely treat with an antibiotic. If the infection does not resolve, we reassess, seek more history,and attempt a different antibiotic. If the infection persists still, we dig further and broaden ourclinical considerations. We may follow the child more closely and dedicate more time andattention to the patient. No reasonable pediatrician would consider firing this child from his orher practice for having an annoyingly resistant infection that does not respond to treatment, evenif it puts other children in the waiting room at risk.Just as with antibiotics, conversations about vaccines do not work every time. Conjuringsincere empathy and respect and responding non-judgmentally are skills worth relying on when asmall part of us wants to backhand parents like Batman backhands Robin. With time,conversation will persuade a few – and a few is a few more than before. We suggest theprofessionally and ethically appropriate response to vaccine refusal involves letting go ofperceived affronts to our profession and our personal commitments to its values because, in theend, we share the same goal with parents who refuse vaccines: to protect their children.1. Healy C, Pickering L. How to communicate with vaccine-hesitant parents. Pediatrics.2011;127(S1): S127YS133. doi: 10.1542/peds.2010-1722S.2. Flanagan-Klygis E, Sharp L, Frader J. Dismissing the family who refuses vaccines: astudy of pediatrician attitudes. Arch Pediatr Adol Med. 2005;159(10):929Y933.http://archpedi.ama-assn.org.ezproxy.hsc.usf.edu/cgi/content/full/159/10/929. AccessedFebrurary 1, 2013.

3. American Academy of Pediatrics, Division of Health Policy Research. Periodic Survey ofFellows No. 48: Immunization Administration Practices. Elk Grove Village, IL:American Academy of Pediatrics; 20014. Jaslow, Ryan. Doctors “fire” patients who refuse vaccines for their children: Ethical?CBS News. March 20, 2012. Accessed Feb 6, 2013 at http://www.cbsnews.com/8301-504763_162-57379618-10391704/doctors-fire-patients-who-refuse-vaccines-for-theirchildren-ethical-/.5. Halperin B, Melnychuk R, Downie J, MacDonald N. When is it permissible to dismiss afamily who refuses vaccines? Legal, ethical, and public health perspectives. PediatrChild Health. 2007;12(10):843Y845. Accessed January 13, 2013 athttp://www.ncbi.nhlm.nih.gov.ezproxy.hsc.usf.edu/pmc/articles/PMC2532570/pdf/pch12843.pdf.6. Diekema D, American Academy of Pediatrics Committee on Bioethics. Responding toparental refusals of immunization of children. Pediatrics. 2005;115(5): 1428Y1431. doi:10.1542/peds.2005-0316.7. Gust D, Darling N, Kennedy A, Schwartz B. Parents with doubts about vaccines: whichvaccines and reasons why. Pediatrics. 2008;122:718Y725. doi: 10.1542/ peds.2007-0538.8. Carnegie, Dale. How to Win Friends and Influence People. New York, NY: Simon &Schuster, 2009.9. American Board of Pediatrics. Appendix F: professionalism. In: Program Director'sGuide to the ABP: Resident Evaluation, Tracking & Certification. Chapel Hill, NC:American Board of Pediatrics; 2003.