Communicating with Patients: Vaccine Preventable Diseases and Anti-Vaxx Communities
During my pediatrics training, I took care of a teenage boy with sickle cell disease in the pediatric intensive care unit. He was suffering from Acute Chest Syndrome, a condition where misshapen "sickle" blood cells clog up the capillaries in the lungs. These blockages cause infarcts (damage) to lung tissue preventing the lungs from doing its job of air exchange. Acute Chest Syndrome is a serious condition with high risk of death if left untreated. The boy required an exchange blood transfusion - a process where his misshaped blood cells are exchanged for a donor's normal blood cells. The problem was, he was a Jehovah's Witness. The religion did not allow blood transfusions and therefore his mother would not consent. I could see the pain in her face as she was refusing to sign the consent form. The attending physician then explained to her that the hospital would have to seek emergency consent from a judge and she appeared relieved. Her child would be saved and so could her place within her religious community.
I thought of this boy with Sickle Cell Disease when I read the recent The New York Times* opinion essay by palliative physician Rachael Bedard discussing a conference she attended put on by the fringe group, Child Defense Fund, an anti-vaxx organization. She states "Suffering without meaning is very hard for most people to bear. Children’s Health Defense, like religion, helps people put their suffering in context. It offers people explanations that fuse spirituality and science." Later she says "I now understand more viscerally that MAHA and the anti-vaccine movement are growing because they offer people ways to translate their stories into new purpose." This makes a lot of sense to explain why people hold on to fringe beliefs - it supports a world view that shields them from the pain of their own decisions. Decisions, that in the extreme, can lead to the death of their children as is the case with children in Texas who died of measles, a vaccine preventable disease.
Parents want to do the best for their children. Even parents who make the decision to not vaccinate their children. Parents are preyed upon by people from organizations like the Children's Health Defense. We can only guess the motivation of those people - some are physicians and nurses who should know better. Most are monetizing their opposition to science and facts. They use anecdotes, bad science and outright lies to convince parents that vaccination is harmful or even evil. Parents who may be distrustful to begin with or like the people attending the Children's Health Defense conference and the mother of the boy with Sickle Cell Disease, they need to be part of a belief system and community that leads them to make decisions that most parents would not make.
Fortunately most parents vaccinate their children and trust their pediatricians. But unfortunately, there are just enough parents who don't vaccinate that we are seeing outbreaks of diseases we haven't seen in many years - not just measles but also Pertussis ("Whooping Cough"), a disease that causes babies to struggle to breathe, stop breathing, and in some cases, die.
So what do we as public health and medical experts do? More listening, compassion, and patience for patients who have adopted fringe beliefs. Pediatricians should continue one-on-one conversations with parents and gain and maintain their trust compassionately. Scolding parents for not vaccinating, especially if their children are harmed by the decision to not vaccinate will only push them into the arms of the likes of the Children's Health Defense and other bad actors. We need to understand the fringe's motivations - attention and money. At the same time, we must hold bad practitioners and anti-science organizations accountable for their lies. We must continue to put out evidence-based recommendations and uncover ways to reach all on platforms people access. Moreover, our professional organizations and public officials must hold charlatans and quacks to account by investigating their activities, pulling medical licenses and certifications when necessary, pushing these people out of leadership roles, and continue to protect the public.
* Rachael Bedard. I Went to an Anti-Vaccine Conference: Medicine is in Trouble. Read Article at NYTimes.com