From the Guidelines
The treatment should proceed as recommended by the medical team, despite the 8-year-old girl's objection, as the parents have the legal authority to make medical decisions for minors in life-threatening situations like relapsed acute myeloid leukemia. While it's essential to respect the child's feelings and concerns, the parents appear to understand the gravity of the situation and have chosen to pursue treatment after extensive discussions with the medical team. The child's objections should be acknowledged compassionately, but they do not override parental consent for necessary medical treatment.
According to the most recent guidelines, such as those from the National Comprehensive Cancer Network (NCCN) in 2023 1, the treatment of relapsed acute myeloid leukemia in children involves aggressive chemotherapeutic regimens and bone marrow transplantation. The NCCN guidelines emphasize the importance of individualizing treatment plans according to a patient's preference, which in this case, would involve the parents' decision-making authority.
The healthcare team should work to address the girl's concerns about school, physical discomfort, and social isolation. This could include arranging for hospital-based education, optimizing supportive care to manage treatment side effects, facilitating visits from friends when medically appropriate, and providing child life specialist services and psychological support. The medical team should continue to communicate with the child in age-appropriate ways about her treatment, involve her in decisions where possible, and help her understand the importance of the treatment while validating her feelings.
This approach balances respect for the child's developing autonomy with the parents' legal authority to consent to life-saving treatment for their minor child. The medical team should prioritize the child's quality of life and involve her in the decision-making process as much as possible, while also ensuring that the treatment plan is aligned with the most recent and highest-quality evidence, such as the NCCN guidelines 1.
Key considerations in the treatment plan should include:
- Aggressive chemotherapeutic regimens, as recommended by the NCCN guidelines 1
- Bone marrow transplantation, as recommended by the NCCN guidelines 1
- Supportive care to manage treatment side effects, such as hospital-based education and child life specialist services
- Psychological support to address the child's concerns and validate her feelings
- Involving the child in the decision-making process as much as possible, while also respecting the parents' legal authority to make medical decisions for their minor child.
From the Research
Patient Autonomy and Treatment Decisions
- The 8-year-old girl's decision to refuse treatment should be considered in the context of her age and maturity level, as well as her understanding of the treatment options and prognosis 2, 3.
- The patient's parents appear to understand their daughter's concerns, but want treatment started immediately, highlighting the complexity of decision-making in pediatric cancer care.
Palliative Care and Quality of Life
- Early palliative care (EPC) has been shown to improve quality of life, reduce psychological symptoms, and enhance end-of-life care in patients with acute myeloid leukemia (AML) 2, 4, 5.
- EPC can help patients with AML manage symptoms, cope with the disease, and make informed decisions about their care, which may be particularly relevant for this patient who is experiencing significant distress from treatment 3, 6.
End-of-Life Care and Prognosis
- The patient's 5-year survival rate is estimated to be 20%, indicating a poor prognosis and highlighting the importance of considering end-of-life care options 2, 6.
- Studies have shown that patients with AML who receive early palliative care are more likely to have a peaceful death, with fewer aggressive interventions at the end of life 4, 6.
Family Support and Involvement
- The patient's family, including her parents and maternal grandmother, are involved in her care and decision-making, which is important for providing emotional support and ensuring the patient's needs are met 2, 3.
- The family's understanding of the patient's concerns and wishes should be taken into account when making decisions about her care, and palliative care can help support the family throughout the disease trajectory 6, 5.