An Ethical Discussion of Parental Care Preference

The article, “Two Infants, Same Prognosis, Different Parental Preferences,” published in the May 2015 issue of Pediatrics, presents a challenging ethical dilemma that brings into question the best interest standard and quality-of-life value judgments among several issues.

In brief, the article presents a poignant scenario: two neonates in the same newborn intensive care unit (NICU) need the same life-saving interventions, including tracheostomy with chronic mechanical ventilation.

One set of parents wants all interventions, even in the face of a questionable neurodevelopmental prognosis for their child. The other parents, who are Amish, want only palliative care, even though their infant’s long-term prognosis may be good. Among their many concerns, the Amish family has no electricity at home, so their infant would have to live in a care facility as long as mechanical ventilation is necessary. In addition, this intervention would incur significant costs to the family and their Amish community. The family, adhering to common Amish tradition, has refused state-sponsored financial assistance.

In the state of Ohio, as in most other states, another complicating factor are laws designed to protect infants with disabilities from having medically indicated treatment withheld. With some clear exceptions such as treatments considered inhumane or merely prolonging death, opinions about a disabled infant’s future quality of life cannot be taken into consideration when choosing whether treatment should be withheld.

“What is ethical is not always legal and what is legal is not always ethical,” notes Pedro Weisleder, MD, a neurologist and director, Center for Pediatric Bioethics at Nationwide Children’s Hospital.

“When we consider situations such as those with families following the Jehovah’s Witnesses faith, we know that if administering blood products will clearly help a patient, we would not hesitate to do so. The situation offers certainty,” says Dr. Weisleder. “In the case of determining care for these neonates, the difference is the uncertainty.”

“Based on this uncertainty, as well as the Amish family’s social milieu,” he continues, “I would argue we would need to follow the request of the parents.”

Perceptions about the family’s concerns, the best interest of the child and what constitutes quality of life obviously complicate the decision-making process.

“If the Amish family had stated their concern in terms of the infant’s physical burden, rather than the financial and social burdens, I think most care teams would more readily accept the parents’ wishes,” offers Sheria Wilson, MD, a neonatologist at Nationwide Children’s who is also member of the hospital’s Ethics Committee. “Our definitions of ‘quality of life’ are value judgments that shouldn’t come into play in these situations; however, those judgments are very difficult to turn off.”

Both Dr. Weisleder and Dr. Wilson emphasize the need for an ethics review and diligent communication with the family to bridge any potential gaps toward the best possible outcome. Unfortunately not every hospital has a formal ethics committee, which can be a significant resource when facing these types of care challenges.

“An ethics committee could be considered the ‘elders’ of the hospital, in the same manner as elders in a church or tribe,” Dr. Weisleder explains. “The committee evaluates situations that cause moral tension and makes recommendations. However, those recommendations may or may not be followed.”

“An ethics committee can help eliminate our inherent biases,” Dr. Wilson says. “As physicians, we often think only of the medical interventions. But we simply cannot forget the constructs of the family.”

Article co-author John D. Lantos, MD, from the Children’s Mercy Hospital Bioethics Center, comments “There is an irreducible tension in moral philosophy between principle-driven approaches and case-based ones. Emerson famously wrote that ‘a foolish consistency is the hobgoblin of little minds.’ “

However, he counters “Jonathan Sacks, former Chief Rabbi of the United Kingdom, thought otherwise when he wrote that ‘A world without values quickly becomes a world without value.’ Rigorous application of principles runs the risk of ignoring the particularities of unique situations. Case-based approaches can lead to an anchorless moral relativism.”

Reference:

Antommaria AHM, Collura CA, Antiel RM, Lantos JD. Two infants, same prognosis, different parental preferences. Pediatrics. 1 May 2015;135:918-923.