EXECUTIVE SUMMARY

The case of a terminally ill U.K. infant ignited a global ethical debate on how to resolve conflicts between the hospital and parents. Some ethical implications include the following:

  • Doctors and hospitals might be reluctant to challenge parents, fearing bad publicity.
  • Ethically sound recommendations about innovative therapies are needed.
  • Training can help clinicians and administrations prepare for similar cases.

The highly-publicized case of Charlie Gard, a terminally ill British infant, ignited a recent global ethical controversy. The case involved a court battle between the hospital, who wanted to remove the infant from life support, and the child’s parents, who wanted their son transferred to the U.S. for an experimental treatment.

“If the case had occurred in the U.S., the parents would have almost certainly been allowed to proceed with the transfer,” says David Magnus, PhD, Thomas A. Raffin professor of medicine and biomedical ethics and professor of pediatrics at Stanford (CA) University, and director of the Stanford Center for Biomedical Ethics.

This is because an institution was willing to accept the patient, an experimental treatment was being offered, and the parents had the means to pay for it. The baby finally was moved to a hospice facility to die.

“That would never have happened in the U.S., where the best interest of the child is primarily dictated by the parents,” says Magnus. “I cannot imagine any hospital in the U.S. would not have transferred the patient.”

In the U.K., there is more emphasis on a “best interest” standard, making it fairly straightforward for providers to turn to courts for a decision. In the U.S., this is very uncommon.

“Unless it’s abuse or neglect, we don’t go to court,” says Magnus. The only exceptions are generally egregious cases where a child’s life is endangered because the parents are refusing a necessary, clearly beneficial surgery or another form of treatment. This reflects the strong emphasis on parental autonomy in the U.S.

“It’s been pretty amazing to me how challenging it is to get child protective services to go to court, even when families are making really terrible decisions that could lead to the loss of the child’s life,” says Magnus.

The Gard case evoked strong public sympathy for the plight of the parents, who wanted to pursue any chance to save their son. John Lantos, MD, professor of pediatrics at Children’s Mercy Kansas City in Missouri, and director of the Children’s Mercy Bioethics Center, says, “Even though the hospital won the legal case, I think the parents won in the court of public opinion.”

Doctors and hospitals might be less likely to challenge parents in similar circumstances in the future, fearing a firestorm of bad publicity. “No hospital or health professional would want to be in the news the way that Charlie’s doctors were,” says Lantos.

The U.K. doctors and nurses reportedly received numerous death threats. “They must be asking themselves whether fighting for their belief that what they were doing was best for Charlie was all worth it,” says Lantos.

The doctors and the parents had deeply held convictions about what was right. “This was a case that called for mediation,” says Lantos, adding that the judge in the U.K. case recommended mediation for similar cases in the future.

Some hospital policies state that when doctors believe treatment to be futile and harmful, they have no obligation to provide such treatment. “But most also say that, if the parents find another doctor who is willing, the baby should be transferred,” notes Lantos.

He says the Gard case raised the following important ethical questions:

  • Is the patient actually in pain? “In court testimony, his clinicians acknowledged that they were uncertain whether he was in pain or not,” says Lantos.
  • Is there any reason to think that the experimental treatment (of nucleoside therapy) had any chance of offering benefit?

“Initially, most doctors said no, and one said yes,” says Lantos. “In the end, they all said no.”

  • Given that the child was not known to be in pain, and that a doctor-stated treatment might be beneficial, then who should decide if it should be offered: doctors, parents, or the courts?

“Generally, in the U.S., if parents can find a different doctor or hospital, then we allow the patient to be transferred,” says Lantos. “The alternative is to have courts deciding which medical opinion is best.”

The Gard case reflects the profound responsibility that physicians and researchers have when making recommendations about innovative therapies.

“We need to help parents like Charlie’s to make wise choices for themselves and their child, especially in the face of great emotional turmoil and uncertainty,” says Robert D. Truog, MD, Frances Glessner Lee professor of medical ethics, anaesthesia, and pediatrics, and director of the Center for Bioethics at Harvard Medical School in Boston. Truog authored a recent paper on the Gard case.1

“Charlie’s parents are like parents everywhere — there are no limits to what they will do for their child,” says Truog. “Clinicians should always be willing to think hard and creatively about how we might help them.”

However, the fact that parents will grasp at even the faintest of hopes underscores the obligation of making ethically sound recommendations.

“We have an obligation to carefully consider the specifics of the patient’s condition, and to make an honest assessment of the likelihood of benefit, before offering experimental treatments as reasonable options,” says Truog.

The consensus of those who had access to Charlie’s medical record was that he had already sustained severe brain injury that could not have been reversed by the drug, even if it did work.

“It’s important to remember that 90% of all drugs never make it past the first round of clinical trials,” says Truog. The drug being offered to Charlie had not even progressed to being eligible for a clinical trial. Despite this, many were persuaded that the ability and willingness of Charlie’s parents to pay for the treatment out of pocket should have made the decision easy.

“The reality is more complex,” says Truog. Even if the treatment did not work at all, Charlie would probably have needed care in a pediatric ICU for weeks or months.

“Even in affluent countries like the United States, pediatric ICUs are operating at full capacity,” says Truog. Children who need urgent care are always accommodated. However, this often is accomplished only by delaying essential but nonurgent procedures and operations for other children.

This makes sense when there is good reason to believe that children are benefitting from the care they are receiving. “It is much harder to justify when this is not the case — even when the parents are paying for the treatment,” says Truog.

For Janet L. Dolgin, PhD, JD, co-director of the Hofstra University Bioethics Center in Hempstead, NY, the Gard case was a reminder of the importance of ethics training in hospitals.

“Clinicians and administrators are better able to respond to the difficult challenges raised by cases such as that of the Gard baby if they have been trained to think about the issues from an interdisciplinary perspective,” says Dolgin, director of Hofstra University’s Gitenstein Institute for Health Law and Policy. “It’s helpful if the team has participated in helping to resolve actual cases or simulated cases constructed for educative purposes.”

Unfortunately, cases involving medical decisions for very ill infants and babies are not rare. Yet, each case is unique.

“Every case challenges those involved — parents, guardians, clinicians, and judges — to examine their own assumptions and motives in attempting to mediate among divergent views about the response or responses that will best serve the sick child,” says Dolgin.

Significantly different conclusions may be drawn about the appropriate course of action, based on the nuances of a particular case.

“There is often no one correct response to such conundrums,” says Dolgin. “They require labor-intensive participation by ethicists, clinicians, family members, and others.”

REFERENCE

  1. Truog RD. The United Kingdom sets limits on experimental treatment: The case of Charlie Gard. JAMA 2017 Jul 20. doi: 10.1001/jama.2017.10410. [Epub ahead of print]

SOURCES

  • Janet L. Dolgin, PhD, JD, Co-director, Hofstra Bioethics Center/Director, Gitenstein Institute for Health Law and Policy, Hofstra University, Hempstead, NY. Phone: (516) 463-5873. Fax: (516) 463-4800. Email: Janet.L.Dolgin@hofstra.edu.
  • John Lantos, MD, Professor of Pediatrics, Children’s Mercy Kansas City (MO). Email: jlantos@cmh.edu.
  • David Magnus, PhD, Director, Stanford Center for Biomedical Ethics, Stanford (CA) University. Phone: (650) 723-5760. Email: dmagnus@stanford.edu.
  • Robert D. Truog, MD, Director, Center for Bioethics/Frances Glessner Lee Professor of Medical Ethics, Anaesthesiology & Pediatrics, Harvard Medical School, Boston. Email: Robert_Truog@hms.harvard.edu.