MMHA 6205 Week 11 Mature Minor Case Analysis Example

Can She Decide, Who Decides if She Cannot, and When May the State Step In? A Sixteen-Year-Old's Refusal of Second-Line Chemotherapy for Relapsed Ewing Sarcoma, Worked Through the Term's Tools

Student Name

Walden University

MMHA 6205: Health Law and Ethics

Instructor Name

Month Day, Year

Can She Decide, Who Decides if She Cannot, and When May the State Step In? A Sixteen-Year-Old's Refusal of Second-Line Chemotherapy for Relapsed Ewing Sarcoma, Worked Through the Term's Tools

Facts

A 16-year-old girl was diagnosed with Ewing sarcoma of the pelvis 20 months ago. She completed nine months of chemotherapy and radiation, with a good response, and returned to school. Three months ago, scans showed new tumors in both lungs. Her oncologist has recommended second-line chemotherapy, possibly followed by further radiation. He has told the family that the chance of long-term survival with relapsed disease of this kind is low, that treatment would last many months, and that its side effects would be similar to those she experienced before: nausea, fatigue, infections, hair loss and repeated hospital stays. Without treatment, she would likely die within months.

She has said she does not want more chemotherapy. In her words, paraphrased: "I did it once because there was a good chance. Now there isn't, and I would rather spend the time I have at home, with my friends, than in the hospital being sick." Her parents support her decision, though her mother says she would choose treatment herself. The family's faith teaches acceptance of what cannot be changed, and they have discussed the decision with their pastor. The oncologist, troubled by the refusal, asked whether the team should report the family to child protective services for medical neglect. Everyone described is fictional.

Capacity

The first question is whether she can make this decision. Capacity is assessed for a particular decision on the evidence available, not presumed absent because of age. Using the same four abilities applied to adults, she can state a consistent choice, which she has held for several weeks. She understands the relevant information: she can describe the relapse, the proposed treatment, its burdens and its uncertain benefit. She appreciates that the facts apply to her, saying plainly that refusing means she will likely die. And she reasons from values she can explain, comparing the burdens of treatment against the chance it offers and the time she wants at home.

She has also been through this treatment before, which gives her an understanding of its burdens that few adults facing a first diagnosis would have. Her psychologist has found no sign of depression that would distort her judgment. On this evidence, she has the capacity to make this decision, though as a minor her legal authority to make it alone is a separate question.

Legal Analysis

Parental authority

Parents ordinarily make medical decisions for their minor children. The Supreme Court has described a presumption that parents act in their children's best interests, while recognizing that the state may intervene when they do not (Parham v. J.R., 1979). Here, her parents agree with her. The decision before the team is therefore not a parent overriding a child, or a child defying parents, but a family making a shared decision.

The state's power to intervene

The state, acting as parens patriae, may override parents' decisions that seriously endanger a child. The Supreme Court stated the principle in a case about child labor: parents may choose martyrdom for themselves but may not impose it on their children (Prince v. Massachusetts, 1944). Courts have ordered treatment over parental objection, typically where treatment is likely to succeed and refusal is likely to be fatal. The power is not unlimited. Under a widely cited framework, the state may step in only when a parent's choice exposes the child to a significant risk of serious harm compared with the other options, when that harm is likely, and when intervening would likely prevent it (Diekema, 2004).

The mature minor doctrine

Some states recognize, by statute or court decision, that a minor who is mature enough to understand a treatment decision may make it herself. In one case, the Illinois Supreme Court held that a 17-year-old who was mature enough to appreciate the consequences of her actions could refuse life-saving blood transfusions (In re E.G., 1989). States differ in whether and how they recognize the doctrine, and the hospital's counsel should advise on this state's law. Even where the doctrine is not formally recognized, her maturity bears on what is in her best interests and on whether intervention is justified.

The reporting question

Clinicians must report suspected medical neglect. But neglect is not the same as disagreement with a medical recommendation. When the recommended treatment offers a low chance of cure at a high burden, and a capable adolescent and her parents decline it after careful thought, the refusal does not place her at significant risk of harm compared with the alternative, because the alternative offers little more. The threshold for a neglect report is not met.

Ethical Analysis

Three values are in play. Her best interests require weighing what treatment might give her, a low chance of longer life, against what it would cost, months of illness and time away from what she values. Reasonable people could weigh these differently, and her own weighing is informed by experience. Her emerging autonomy deserves increasing weight as she matures. The American Academy of Pediatrics has advised that adolescents should take part in decisions about their care in a way that matches their developing capacity, and that their assent and refusal carry real moral weight, especially when the proposed intervention is not essential or likely to succeed (Katz et al., 2016). And the family's shared values, including their faith's teaching about acceptance, are not a reason for suspicion. They frame a decision she and her parents reached together.

The oncologist's concern also deserves respect. Clinicians who treat children are trained to fight for them, and accepting a refusal can feel like abandoning the patient. Supporting the oncologist, through ethics consultation and the palliative care team, is part of a good resolution.

Resolution

The team should not file a neglect report. It should offer a second opinion from another pediatric oncologist, both to confirm the prognosis and to give the family and the oncologist confidence that no better option has been missed. It should bring in the palliative care team now, to manage symptoms, help her pursue her goals at home and support her family. It should keep the conversation open, telling her that she can change her mind and that the oncologist will remain her doctor whatever she decides. If an early-phase clinical trial with acceptable burdens is available, it should be presented as an option, not a condition.

Some facts would reverse this recommendation. If the second opinion found a treatment offering a good chance of cure at a tolerable burden, the balance would change, and the team would need to revisit the question of intervention. If she developed depression or other conditions affecting her judgment, her capacity would need reassessment. And if her refusal turned out to be the product of pressure rather than her own choice, or if she and her parents came to disagree, the analysis would need to start again from the question of who decides.

References

Diekema, D. S. (2004). Parental refusals of medical treatment: The harm principle as threshold for state intervention. Theoretical Medicine and Bioethics, 25(4), 243-264. https://doi.org/10.1007/s11017-004-3146-6

In re E.G., 133 Ill. 2d 98 (1989).

Katz, A. L., Webb, S. A., & Committee on Bioethics. (2016). Informed consent in decision-making in pediatric practice. Pediatrics, 138(2), e20161485. https://doi.org/10.1542/peds.2016-1485

Parham v. J.R., 442 U.S. 584 (1979).

Prince v. Massachusetts, 321 U.S. 158 (1944).