Pediatric Goals of Care: Phase I Trial Versus Home Hospice
Jamal is 7 and has diffuse intrinsic pontine glioma, diagnosed 10 months ago. He has headaches, swallowing difficulty, and steroid-related weight gain; he has missed 40 school days. His father wants to enroll him in a phase I trial 5 hours away and says, 'We can't give up.' His mother wants home hospice and says, 'He hates the hospital.' Jamal's 10-year-old sister has developed school refusal and nightmares. Jamal sometimes says, 'I don't want any more pokes,' and asks if he did something wrong. The parents agree that Jamal should not be told he is dying, but they disagree about almost everything else. The oncology team says a phase I trial offers no proven survival benefit and that his prognosis is weeks to months. The team asks you to address the child's understanding, the parents' conflict, and sibling support.
1. How do you assess Jamal's understanding and involve him without overriding his parents?
Read the worked answer
At 7, Jamal is likely to use magical thinking and may believe he caused the illness. I would ask what he knows, what he has heard, and what worries him, using open-ended questions and play or drawing. I would explicitly correct self-blame: 'You did nothing wrong.' I would explore 'no more pokes' as a wish for comfort, not as a binding treatment decision. His parents have authority, but Jamal's assent and distress matter. I would not disclose the prognosis without parental permission unless legally required, but I would advocate that silence may increase his fear. I would offer to help the parents tell him in developmentally appropriate language, such as 'The tumor is making your body work very hard, and we will do everything to keep you comfortable.' I would document his statements and the parents' preferences.
2. How do you facilitate the parents' disagreement about the phase I trial versus home hospice?
Read the worked answer
I would meet with the parents together and separately. I would validate the father's hope and the mother's exhaustion. I would clarify that hospice and a phase I trial are not always mutually exclusive; palliative care can be concurrent. I would ask the oncologist to explain the trial's burden: travel, toxicity, time away from home, and no proven survival benefit. I would explore each parent's fear: the father fears giving up; the mother fears Jamal suffering. I would use a values-based framework: What would Jamal want? What kind of time matters most? I would propose a time-limited trial with clear stopping criteria or home hospice with palliative treatment. If the parents remain split, I would request ethics consultation and legal guidance about guardianship. I would not decide for them; I would facilitate a decision that is informed and shared.
3. What sibling and school supports do you recommend?
Read the worked answer
For the 10-year-old sister, I would arrange child-life support and age-appropriate information, reassure her that she is not responsible, maintain routines, and refer to grief counseling. For school, I would coordinate with the counselor, create a 504 plan for absences, plan reentry, and educate peers. For Jamal, I would maintain school contact if he wishes, using video calls or cards. For the family, I would arrange respite, meals, transportation, and financial assistance through pediatric cancer foundations. I would involve the chaplain for spiritual support. I would also monitor the parents' grief and conflict. The sibling's school refusal and nightmares are symptoms of family distress, not misbehavior; the plan should support the whole family.