Events

Join us for a monthly discussion at Johns Hopkins Hospital about an important clinical ethics issue

• Open to all those who have an interest in the intersection between ethics and medicine
• CME credits available
• Lunch provided!

Lunch will be provided, RSVP to Allison Christopher if you plan to attend

Click here for CME information associated with this event

Case

In 1970 Dr. Alex Haller, Director of Pediatric Surgery at the Johns Hopkins Children’s Center upheld parents’ wishes to withhold surgery for their infant who was born with Down Syndrome and duodenal atresia. The infant died on CMCS 5 fifteen days later and became one of the infamous pediatric ethics cases of that era. In response to this ethical dilemma, “Who Should Survive “a documentary film depicting the ethical issues embedded in this case and other so called “Baby Doe” cases was produced.  It was sponsored by Eunice Kennedy Shriver of the Kennedy Foundation.

The legacy of a series of “Baby Doe” cases has had far-reaching implications on the care of neonatal and pediatric patients that persist in contemporary clinical practice. In this session we will examine the ethical and legal landscape of parental decision making for critically or chronically ill infants and children, including the moral adversity that arises when parental decisions and professional perspectives collide.  A moral framework of pediatric decision-making, including respect for persons, the zone of parental discretion, and the best interest standard will be explored. We will discuss the implications of the legacy of Baby Doe on current clinical practice and the contemporary ethical issues that have emerged since. Suggestions for how to engage with parents in integrity-preserving ways will be discussed.

Objectives

1. Identify the key ethical and legal issues that arose from the Hopkins “Baby Doe” case.
2. Discuss a moral framework for parental decision-making.
3. Examine the implications of the Baby Doe cases on parental decision making.
4. Identify strategies for ethically-grounded parental decision making.

References

Ruth A, Boss RD, Donohue P, Shapiro M, Raisanen J, Henderson CM. Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness. J Clin Ethics2020;31(4):340-352.

Kon AA, Morrison W. Shared Decision-making in Pediatric Practice: A Broad View. Pediatrics. 2018 Nov;142(Suppl 3):S129-S132. doi: 10.1542/peds.2018-0516B. PMID: 30385618.

Salter EK, Hester DM, Vinarcsik L, Matheny Antommaria AH, Bester J, Blustein J, Wright Clayton E, Diekema DS, Iltis AS, Kopelman LM, Malone JR, Mercurio MR, Navin MC, Paquette ET, Pope TM, Rhodes R, Ross LF. Pediatric Decision Making: Consensus Recommendations. Pediatrics. 2023 Sep 1;152(3):e2023061832. doi: 10.1542/peds.2023-061832. PMID: 37555276.

Salter EK,  Ross LF, Hester DM. How We Found Consensus on Pediatric Decision-Making and Why It Matters. Perspectives in Biology and Medicine 67(2):186-196.

Fost N. “The Hopkins Mongol Case”: The Dawn of the Bioethics Movement. Pediatrics. 2020 Aug;146(Suppl 1):S3-S8. doi: 10.1542/peds.2020-0818C.

Additional Resources

Robert Cooke described his involvement with the “Who Should Survive?” film when he was asked about the history of the Belmont Report:
https://videocast.nih.gov/summary.asp?Live=11528

Link to the movie “Who Should Survive?“