Ethics Consult: Potentially Hasten Baby’s Death to Ease Suffering? MD/JD Weighs In

Welcome to Ethics Consult — an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a real, but anonymized, patient care case and then provide expert commentary.

Last week, you voted on whether doctors should administer morphine to an infant with a severe, terminal genetic disorder.

Should doctors try to obtain a court order to administer analgesics over the parents’ sincere religious objections?

Yes: 56%

no: 44%

And now, bioethicist Jacob M. Appel, MD, JD, weighs in:

Parents are generally allowed to make medical decisions for their young children, with the understanding that they will act in the children’s best interests. In cases where a parent’s sense of a child’s best interests differs from that of society — such as Christian Scientists opposing medication for serious but treatable illnesses — the state often imposes its own standards.

However, a “best interest standard” becomes more challenging to apply when the medical consensus is that an infant would be better off dying sooner.

Several countries, including the Netherlands and Belgium, have decriminalized euthanasia for minors. In 2005, Dutch physician Eduard Verhagen, MD, JD, PhD, proposed what has come to be known as the Groningen protocol, to end the lives of babies experiencing hopeless and unbearable suffering. These children are usually given lethal combinations of the drugs morphine and midazolam (Versed).

Decisive for the Groningen protocol is the consent of the child’s parents. Parental consent may be a practical necessity, making the procedure politically palatable to those who might balk at ending a sick child’s life over her parents’ objections. However, the requirement for parental consent to take such action differs from the criteria used in relation to other medical interventions, from chemotherapy to surgery, where the best interests of the child are paramount.

One justification for the difference may be that losing a child is often a deeply traumatic experience. Since Eli and Delilah will have to live with the consequences of their baby Frances’ death—on a much greater scale than her doctors—an ethical evaluation of her premature termination of life can also assess its impact on them.

However, such an approach runs the risk of falling down a slippery slope: Decisions to end life support for unconscious adults, for example, may similarly be evaluated for their impact on survivors, rather than only according to the previously expressed wishes of the patients. Creating a “survivor veto” risks undermining patient autonomy.

In discussing cases like Frances’s, ethicists often talk about the “double effect” of giving morphine. The goal of additional medication is pain control; death is merely an unintended or unavoidable secondary consequence. While this distinction may have philosophical merit, it is often of little comfort to couples like Eli and Delilah.

Jacob M. Appel, MD, JD, is the director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and an MA in Bioethics from Albany Medical College.

Check out some of our previous Ethics Consulting cases:

Genetic testing for potential employees?

Add lithium to city drinking water?

Fertilize the human egg with Neanderthal sperm?