I'm caring for Lisa, 10, who has a rare and aggressive brain tumor with a poor prognosis. Bright and articulate, she told me months ago that she wasn't afraid to die and didn't want to undergo chemotherapy. But her parents convinced her to give it a try, even though the response rate was less than 5%.
The treatment wasn't effective, and now Lisa is nearing the end of her life. She seems to have accepted this, yet her parents won't give up. Yesterday I heard her dad say, “You can't die now; we need you!”
I'm deeply troubled by this and want to help the child—but how?—K.S., ONTARIO
This situation's extremely difficult for all involved, but especially for Lisa. She has to face dying and death without her family's support—because although they're physically present, they're not emotionally and spiritually available.
For Lisa's sake, her parents need to let her go. And you can be the catalyst that helps them take this step.
Sit privately with Lisa and ask if she feels like sharing what she's going through and how she feels about this cancer. If she does, ask if she wants you to relay those words to her family or if she'd prefer to tell them herself. If she chooses the latter, ask if she'd like you to be present as her advocate.
With your support, she may find the courage to speak to her parents about her wishes. She's probably tried to talk with them in the past but been discouraged by their distress.
In your role as Lisa's advocate, you might call her parents to her bedside and say something like this: “Lisa loves you so much and appreciates all you've done during these weeks and months. Now she has something very important that she needs to say.”
Listening to their child say that she doesn't want to go on will be heartbreaking for Lisa's parents. But they need to hear the truth.
During the conversation, you might ask Lisa if she'd like to discuss her funeral or tell her family how she wants to be remembered. This is the time to identify her favorite music, readings, and people she'd like to speak about who she was and why she was a great kid. You could suggest the idea of making a hand cast that she can give to her parents and grandparents. Or she might want to produce a short video as a personal way to say good-bye to friends and family.
Finally, I recommend that you talk about getting hospice involved. Lisa's parents may need help to honor her wish to avoid “heroic” interventions as death approaches. Hospice personnel can provide good counsel and support in this matter. They'll also provide bereavement follow-up for a year after Lisa dies, when her parents will need compassion and emotional support as they adjust to life without their child.
Joy Ufema pioneered the role of death-and-dying specialist at Harrisburg (Pa.) Hospital in 1973. She's currently clinical specialist at Upper Chesapeake Medical Center in Bel Air, Md., and at Harford Memorial Hospital in Havre de Grace, Md.