Ethics Forum: Pediatric Vaccination Refusals Raise Challenges for Physicians

Vaccine development may be the single most impactful advancement in the history of medicine. Despite this, there is a strong anti-vaccination movement.
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The boy who could not walk: S.L. is a previously healthy 10-year-old boy who has not walked for three months. Physical examination reveals swollen wrists, knees, ankles and several toes. There is reduced hip range of motion and flexion contractures of both knees. He can stand with assistance, but is unable to take a single step. Laboratory testing reveals elevated inflammatory markers, anemia and a positive HLA-B27. MRI reveals erosions and bone edema of both SI joints. He is diagnosed with juvenile ankylosing spondylitis and treatment with methotrexate and a TNF inhibitor is recommended. As per well-established guidelines, routine childhood vaccinations are recommended prior to initiation of immunosuppressive therapy.¹ However, he has never received any of the recommended childhood vaccines, and his parents do not want their son to be vaccinated now.

The rationale for the treatment recommendations and the guidelines for vaccination are explained to his parents. They are in agreement with methotrexate and TNF inhibitor treatment but they are not willing to vaccinate their son. Given the risks of taking anti-rheumatic medications without receiving recommended vaccinations, what should be done?

The Vaccine Controversy

Vaccine development may be the single most impactful advancement in the history of medicine. Despite this, there is a strong anti-vaccination movement, which can be traced back to controversies around smallpox vaccination practices and the founding of the Anti-Vaccination Society of America in 1879. Fast-forward to 1998 when The Lancet published Andrew Wakefield’s paper about an association between the MMR vaccine and autism.² This resulted in an explosion of mistrust around childhood vaccines. Wakefield’s paper was subsequently retracted in 2010 when re-analysis revealed serious flaws in methodology; larger studies failed to demonstrate a significant correlation between vaccination and autism.³ Yet the reluctance to vaccinate continues today for many parents.

In fact, vaccine refusal has become such a common problem for general pediatricians that many are tempted to dismiss these families from their practice. Given that the primary responsibility of the pediatrician is to the child, and that as pediatricians it is our duty to forge a partnership with families with the shared goal of optimizing their child’s health, most pediatricians would agree that the provider should not discharge the patient. However, the case of the child who will be immunosuppressed by virtue of the medications that you are prescribing presents a different risk–benefit analysis. This pushes the need for agreement between the provider and the family to an even higher level.

Balancing Individual Autonomy & Herd Immunity

Ethical concerns around vaccination frequently center on the tensions between what is best for the individual, what is best for society and how to respect patient autonomy. Vaccination provides real benefit—and typically, little risk—to individuals. Herd immunity ultimately benefits all of society. The impact of the loss of herd immunity is starkly demonstrated by recent outbreaks of preventable disease in communities with high non-vaccination rates.⁴

In the case of a child with a rheumatic disease who is beginning a biologic agent, the individual patient’s risk of developing a preventable infection and the individual’s potential benefit from vaccination are both even higher than usual. The case becomes even more difficult when there is an urgency to treat: a non-ambulating child with active inflammatory arthritis is at risk for joint damage and permanent loss of function. And although respect for patient autonomy is a guiding ethical tenet, physicians are not obligated to provide treatment they deem inappropriate.

Shared Decision Making

Shared decision making refers to the collaborative process in which a patient and their provider make decisions together after considering the relevant evidence, preferences and values. The goal of shared decision making has been endorsed by the Institute of Medicine and put into law in some countries. However, when a shared decision is accompanied by unacceptable risk or when there appears to be no middle ground, a shared decision may be impossible.

Where Is Our Duty?

When a parent is making medical decisions for their child, pediatricians have an ethical obligation to ensure the parent understands the issues and makes responsible decisions. In the general pediatric setting, physicians are advised to provide parents with information about vaccination risks and benefits and to have a meaningful conversation. If parents continue to refuse vaccination, the provider may request the parent sign a “refusal to vaccinate” form documenting that they have been provided information and the opportunity to have their questions answered. However, in the case presented, the rheumatologist needs to administer the vaccines in order to treat the arthritis.

This case raises a number of difficult questions, including:

• Is it better to withhold treatment due to non-vaccination or to accept the infectious risks of treating a non-vaccinated child?
• What happens if the opinions of the patient and the provider are so different that a truly shared decision cannot be made? Does shared decision making work when the two parties cannot even agree on the options for consideration?
• If compromise brings risk, how much risk is acceptable?
• How would you handle this situation? And would your answer be different if the condition requiring treatment was cancer or another life-threatening disease rather than for a rheumatic disease?

Resources & Strategies

Here are some useful resources to consider in approaching these questions:

• Consult the American Academy of Pediatrics website for vaccine resources, including a downloadable refusal-to-vaccinate liability form.⁵
• If you are considering dismissing your patient from your practice, facilitate transfer of care to another provider as part of your obligation to do no harm and to avoid the appearance of abandonment.
• If available, consult with a risk-management expert to discuss legal ramifications and whether a parent’s refusal to vaccinate their child in the setting of immunosuppressant treatment constitutes medical neglect warranting referral to child protective services.
• Refer to your state’s laws governing vaccination requirements for attending daycare and school.⁶ This is an important justification for vaccination. However, most states allow for individual autonomy by providing exemptions, which fall into three categories: medical, religious and philosophical.

In cases such as this, in which the ethical challenges are complex and extensive, there is often no single right answer. Rather the right thing is to remain both informed and compassionate, while keeping one’s focus on what is best for the patient.

Emily von Scheven is professor of pediatrics and division chief in rheumatology at the University of California, San Francisco Benioff Children’s Hospital. She is a clinical investigator who cares for children with diverse rheumatic diseases, and currently serves as a member of the ACR’s Committee on Ethics and Conflict of Interest.

Editor’s note: If you have comments or questions about this case, or if you have a case that you’d like to see in Ethics Forum, email us at [email protected].

References

1. Kimberlin DW, Brady MT, Jackson MA, Long SS. Red Book 2015: Committee on Infectious Diseases, 30th edition. American Academy of Pediatrics, Elk Grove Village, Ill.; 2015.
2. Wakefield AJ, Murch SH, Anthony A, et al. Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet. 1998 Feb 28; 351(9103):637–641.
3. Taylor LE, Swerdfeger AL, Guy D. Eslick GD. Vaccines are not associated with autism: An evidence-based meta-analysis of case-control and cohort studies. Vaccine. 2014 Jun 17;32(9): 3623–3629.
4. Clemmons NS et al, Measles—United States, January 4-April 2, 2015. MMRW. 2015 Apr 17;64(14):373–376.
5. American Academy of Pediatrics. Refusal to vaccinate and liability. 2015 Oct.
6. Centers for Disease Control & Prevention. State vaccination requirements.