In the US, ages 18 and 21 are legal markers. Voting, drinking, serving in the military, buying a gun. A birthday changes rights, responsibilities, and obligations.

Medscape recently posted a case: A Teenage Girl Refuses More Cancer Treatment; Her Father Disagrees.

Here, the patient was a young woman, age 17.

She was diagnosed with osteosarcoma at age 9. She experienced half her life with a diagnosis of osteosarcoma.

The vignette stated, “she had received chemotherapy and had been under that treatment for a while.”

It was not clear if she had had prior surgery. But the story continued that initially her chemotherapy worked.

Given that this story was titled ethical conundrum, you can assume her cancer recurred. And it did.

She went to school and enjoyed sports. She was a real fan of softball and tried to manage the team and be involved. …she was planning to go to college. Her love of softball remained, but given the recurrence of the cancer, she had no chance to pursue her athletic interests, not only as a player, but also as a manager or even as a coach for younger players. That was all off the table.

Apparently, once her cancer recurred, standard treatments were off the table. The story did not provide details as to what type of recurrence was identified. Presumably systemic spread. No mention was made of surgery. And conventional chemotherapy was not an option; only an “experimental protocol.”

Again, unclear if “experimental protocol” meant a drug that was approved for different indications, or whether it was a novel medication in early clinical trials, and, if so, how far along was the drug in such trials. Phase 2? Phase 3?

Anyway, the 17-year-old drew a line in the sand. She said it was her body, her Choice. She had had enough.

She said to her family and the doctors that she didn’t want to do it. She would rather die. She couldn’t take any more chemotherapy and she certainly didn’t want to do it if it was experimental, with the outcomes of this intervention being uncertain.

Mom and Dad were not in line with their daughter.

Her dad said, “She can’t decide. She’s a minor. She’s only 17. I want you to do it — administer this novel form of chemotherapy and try to save her.” Her mother said, “Her input matters. I want to listen to her.” Her mom wasn’t as adamant about doing it or not, but she really felt that [the daughter] should be heard loudly because she felt she was mature enough or old enough, even though a minor, to really have a position about what it is to undergo chemotherapy.

An ethics consult was obtained. A social worker was brought in to discuss the case. The family had strong religious convictions, and their pastor was also brought in to discuss. The family discussed the case with all parties.

Here’s what the young girl wanted. Beyond no additional treatment.

What she wanted was to go to her prom. She wanted to get to her sister’s junior high school softball championship game. 

Modest goals. But important goals to HER.

Ultimately, an agreement was reached that she would not undergo the experimental intervention. [All] agreed on a course of palliative care, recommended that as what the doctors follow, and they decided to do so. Sadly, [the daughter] died. She died at home. She did make it to her prom.

These are tough decisions. And each patient and each family are different. While this girl was technically a minor, she had lived with osteosarcoma for years. She would soon be age 18, if she lived that long. It seemed futile to provide chemotherapy, with its attendant side effects, which might allow her to live to age 18, only getting her to the point where she could legally withdraw further treatment.

If a judge has been forced to decide, it’s not clear how this would have gone. Ultimately, guardian ad litem would be assigned to look after the child’s interests. But given that the protocol was experimental with an uncertain outcome, a judge may very well have ruled for the daughter.

This is different than cases where a Jehovah’s Witness parent refuses to allow their minor child to receive a blood transfusion for an urgent procedure, one potentially associated with significant blood loss. There, the judge will almost always rule that the medical team CAN transfuse the patient.  

Cases like these define why medicine in the real world can be difficult.

What do you think?

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Jeffrey Segal, MD, JD

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Dr. Jeffrey Segal, Chief Executive Officer and Founder of Medical Justice, is a board-certified neurosurgeon. Dr. Segal is a Fellow of the American College of Surgeons; the American College of Legal Medicine; and the American Association of Neurological Surgeons. He is also a member of the North American Spine Society. In the process of conceiving, funding, developing, and growing Medical Justice, Dr. Segal has established himself as one of the country’s leading authorities on medical malpractice issues, counterclaims, and internet-based assaults on reputation.

Dr. Segal was a practicing neurosurgeon for approximately ten years, during which time he also played an active role as a participant on various state-sanctioned medical review panels designed to decrease the incidence of meritless medical malpractice cases.

Dr. Segal holds a M.D. from Baylor College of Medicine, where he also completed a neurosurgical residency. Dr. Segal served as a Spinal Surgery Fellow at The University of South Florida Medical School. He is a member of Phi Beta Kappa as well as the AOA Medical Honor Society. Dr. Segal received his B.A. from the University of Texas and graduated with a J.D. from Concord Law School with highest honors.

In 2000, he co-founded and served as CEO of DarPharma, Inc, a biotechnology company in Chapel Hill, NC, focused on the discovery and development of first-of-class pharmaceuticals for neuropsychiatric disorders.

Dr. Segal is also a partner at Byrd Adatto, a national business and health care law firm. Byrd Adatto was selected as a Best Law Firm in the 2023 edition of the “Best Law Firms” list by U.S. News – Best Lawyers. With over 50 combined years of experience in serving doctors, dentists, and other providers, Byrd Adatto has a national pedigree to address most legal issues that arise in the business and practice of medicine.