The first ethics case discussion Trevor M. Bibler, PhD, was a part of was about a little boy who was a candidate for a liver transplant. His parents did not want him to receive it because they were hoping for miracle.

“When I asked the ethicist presenting the case what the family meant by miracle, he said he wasn’t sure,” says Bibler, an assistant professor of medicine at the Center for Medical Ethics and Health Policy at Baylor College of Medicine in Houston.

Bibler decided to research this topic, and found some literature on medicine and miracles. What was missing was discussion of how healthcare professionals might respond to the hope for a miracle.

It became apparent, says Bibler, “that additional theoretical discussion, but also practical recommendations, could be helpful for pediatricians who encounter parents or guardians who are hoping for a miracle of some kind.”

Parents and the clinical team sometimes conflict on what they believe is best for the child. “The hope for a miracle seems to be a persistent challenge in pediatric medicine — and adult medicine as well,” Bibler observes.

Clinicians give parents as much leeway as possible on what is best for their child. “But there can be a tension that arises when the healthcare professional disagrees with this plan,” Bibler notes.

When parents hope for a miracle, they usually also request to start or continue specific interventions. “Ethically and professionally, the healthcare professional is put in a tough spot,” Bibler says.

Clinicians have to respect the parents’ beliefs while meeting their own ethical obligations to promote good consequences and minimize bad ones. “The real ethical crux of the issue is that the hope for a miracle can be a clash of worldviews,” Bibler explains.

As a clinical ethics fellow, Sophia Fantus, PhD, was consulted on cases where families hoped for a miracle. The medical team appeared to be frustrated.

“They interpreted the family as being unable to comprehend the advice and guidance of the healthcare team, and that religion or spirituality was being used as a way to avoid or deter any sort of decision-making,” says Fantus, an assistant professor at the University of Texas at Arlington School of Social Work.

Discussions stalled as both families and providers struggled to assess their own values, morals, and beliefs. “Religion has been shown to play a positive role for loved ones, contributing to an understanding of why this painful experience has happened,” says Fantus, adding that effective responses to hopes for miracles “can ultimately help bridge rapport in the patient-provider relationship.”

Parents sometimes want life-sustaining technology continued because a miracle is possible, but the pediatrician believes it is harmful. The key to an ethical response in this kind of case, says Bibler, is to gain insight into what the parent means by “miracle.” A recent paper offers a process-based approach to this.1

“We describe guardians who hope for a miracle as integrated, seeking, and adaptive,” says Bibler, the paper’s lead author. Where the parent falls in these categories affects the pediatric care team’s response:

Integrated. Families in this group often refer to Bible passages or stories in conversations with the healthcare team.

“Some families may have an altar in place by the bedside, and may hold onto rosaries or place crucifixes in the room at bedside,” Fantus reports. These families make statements such as “Only God determines who can live or die.”

“They are applying their religious worldview into their grief and loss,” Fantus says. For these families, a miracle is a quick and complete recovery of the child. One ethics consult involved with a family of a patient on extracorporeal membrane oxygenation with a dire prognosis. The family asked the team how many hours they would allow for them to pray and ask God to perform a miracle.

“The family asked for 12 hours, seeing as that was sufficient time for God to perform a complete recovery,” Fantus says.

Seeking. An example is a parent with a child on life-sustaining interventions who sees the healthcare professionals as the hands of God. The families may pray or cite religious texts, but they also rely on providers’ expertise. “However, if the treatment plan changes or the clinical condition changes, the hope for a miracle may also change,” Fantus says. The family often concludes that it is God’s plan.

Chaplains can help the family shift the way they interpret a miracle as the clinical condition changes. “This may allow for time-limited trials and best- and worst-case scenario examples,” Fantus offers.

Adaptive. Families in this category often do not want to speak to a hospital chaplain, and rarely pray or rely on religious texts.

“They utilize religion in order to promote their right to decide on their child’s care plan,” Fantus explains. Often, the families believe the healthcare team is not listening. “The majority of cases we have been involved with is due to a lack of communication,” Fantus notes. Frequent shift changes, with many new providers, make trust difficult. “Establishing a strong working relationship may mean holding more frequent family meetings, consistent informal updates, and check-ins at the bedside,” Fantus says.

REFERENCE

  1. Bibler TM, Stahl D, Fantus S, et al. A process-based approach to responding to parents or guardians who hope for a miracle. Pediatrics 2020;145. pii: e20192319. doi: 10.1542/peds.2019-2319.