Your patient is suffering from a universally fatal disease, and there is a treatment that could potentially cure him. But his parents are refusing the treatment. Would you override the parents and seek a court order for the treatment? As pediatricians, our initial knee-jerk is likely, “Of course!” But, what if we cannot guarantee a successful treatment? What if the treatment can have serious complications? What if the parents have good reasons for wanting to focus on comfort care? The authors of this month’s Ethics Rounds from Lantos et al. (peds.2016-0892) encourage us to consider this question on a deeper level.
In the article, an infant presents with a severe, opportunistic infection and is subsequently diagnosed with severe combined immunodeficiency (SCID). For patients with SCID, hematopoietic stem cell transplant (HSCT) is the only curative option. HSCT, however, comes with significant risks and long-term effects, and unlike other treatments, HSCT is permanent. As Dr. Myers comments in the article, “Once a transplant is done, there is no going back.” Transplant changes patients forever – often for the better, but sometimes not. In this case, the parents are refusing transplant, instead opting for comfort care at home. Given that HSCT has a 50-80% survival rate in this disease, the physician team is experiencing great moral distress and is considering legal interventions. The authors lay out the complex list of decisional factors in this situation, and end with a resounding “it’s complicated”. As summarized by Dr. Lantos, “All the choices are bad, all the options are legal, somebody must make a decision that will have irreversible consequences for a child and a family, and nobody seems certain about which choice is ethically best.”
Although few of us will encounter this specific conflict, exploring the ethical extremes teaches us about the best practices for everyday situations. So, what can we extract from this clinical scenario? First, the authors discussed the importance of seeking understanding before making a judgment. “Presumably the parents believe they are making the best decision for their child and family. I need to know how they got there,” writes Dr. Johnson. In other words, physicians should start with listening. We should resist the urge to force our wall of information and logic upon the parents. Rather, we should seek the parents’ reasoning, concerns, understanding, etc. We can only do this with open ears and closed mouths.
Secondly, the authors remind us that survival is not the only number that matters. For parents and patients, it is also important to know what survival means. What are the inherent risks of the treatment? What are the side effects? After treatment, what will their lives look like?
Lastly, if we reach an impasse with parents and feel ethically bound to intervene on the child’s behalf, we have the legal system as a final recourse. This is not an enticing option, but can be necessary at times. However, two important points were raised by the authors: 1) Court involvement does not guarantee that the judge will agree with the clinicians, and 2) legally coerced treatments carry “potential serious emotional and psychological risks for the patient and family.” In these situations, there is no “good” outcome, but only the “least bad.” Though we never hope to be in these situations, the authors of this article have prepared us a bit more if they should come.
