Welcome to Ethics Consult — an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case, and then we provide an expert’s commentary.
Last week, you voted on whether doctors should administer morphine to a baby with a severe terminal genetic disorder.
Should the doctors try to obtain a court order to administer the analgesics over the parents’ sincere religious objections?
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 the parents’ sense of a child’s interest differs from society’s — such as Christian Scientists who oppose medication for severe but treatable illnesses — the state often imposes its own standards.
However, a “best interest standard” becomes more challenging to enforce when the consensus of physicians is that an infant would be better off dying more quickly.
Several nations, 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, for ending the lives of infants experiencing hopeless and unbearable suffering. These children are usually given lethal combinations of the drugs morphine and midazolam (Versed).
Crucial to the Groningen protocol is the consent of the child’s parents. Parental consent may prove a practical necessity, by making the procedure politically palatable to those who might balk at terminating a sick child’s life over the objections of her parents. Yet requiring parental consent to take such action differs from the criteria used regarding other medical interventions, from chemotherapy to surgery, where the best interests of the child are held paramount.
One justification for the distinction may be that losing a child is often a profoundly traumatic experience. Since Eli and Delilah will have to live with the consequences of the death of their baby Frances — to a far greater degree than her doctors — an ethical assessment of ending her life prematurely might also assess its impact on them.
However, such an approach runs the risk of rolling down a slippery slope: Decisions to end life support for unconscious adults, for example, might similarly be assessed for their impact on the survivors, rather than solely upon the previously expressed wishes of the patients. Creating a “survivors veto” runs the risk of undermining patient autonomy.
In discussing cases like that of Frances, ethicists often speak of the “dual effect” of giving morphine. The goal of the 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 solace to couples like Eli and Delilah.
Jacob M. Appel, MD, JD, is 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 a bioethics MA from Albany Medical College.
Check out some of our past Ethics Consult cases: