Ethics Forum: Pediatric Vaccination Refusals Raise Challenges for Physicians

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.