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Participation and Prejudice :

March 31, 2021

His parents believe that it is preferable to pursue comfort care if he fails another trial rather than perform a tracheostomy.

This month’s Pediatrics Ethics Rounds presents the case of a 17-year-old with cerebral palsy and Pierre Robin sequence who experienced respiratory failure following a mandibular advancement and has failed three trials of extubation (10.1542/peds.2021-050358). His parents believe that it is preferable to pursue comfort care if he fails another trial rather than perform a tracheostomy. They express their anger that, having repeatedly recommended comfort care in the past, the medical team is now recommending such invasive treatment. They assert, and the legal department concurs, that the medical team cannot discuss treatment options with their child without their permission. The commentators are Natalie Lancocha, MD, and Tyler Tate, MD, MA, Erica Salter, PhD, and Nanette Elster, JD, MPH.

The case and commentaries raise two interesting issues. One is the role of adolescents in medical decision making. Information in the case would suggest that the patient likely has decision-making capacity—the patient is taking college level classes and is a high-ranking Scout.  While parents should be trusted to accurately represent their children’s preferences, there can be significant shortcomings in proxy decision-making.  In this case, the decision is highly preference sensitive, and the patient’s sedation may be lifted to allow the patient to participate. Is it worth the threat of a lawsuit, further deterioration of the therapeutic relationship, and contravening legal’s recommendation to involve the patient?

The other issue is the difference between relational and ethical issues. The parents believe that healthcare providers have consistently discriminated against their child over the years by recommending against treatment that they recommended for “normal” children. They see the current recommendation as a dramatic change and one that will place even greater burdens on them. It is possible that they are rejecting the recommendation because they do not perceive the individuals making it as acting in their family’s best interests. Narrowly focusing on the ethical issue might miss the real issue.  If this is the case, how can the team reestablish the therapeutic relationship?

Read this month’s Ethics Rounds, think about what you would do, and see what happened.

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