17 - Respectful involvement of children in medical decision making

Summary

H is a bright, loving, 11-year-old child who has been treated for osteosarcoma. Her left arm has been amputated and she was given a course of chemotherapy. She has been cancer free for 18 months and is doing well in school. She is self-conscious about her prosthesis and sad because she had to give away her cat, Snowy, to decrease her risk of infection. Recent tests indicate that the cancer has recurred and metastasized to her lungs. Her family is devastated by this news but do not want to give up hope. However, even with aggressive treatment, H's chances for remission are less than 20%. H adamantly refuses further treatment. In the first round of treatment, she had initially acquiesced to the treatment but ultimately struggled violently when it was administered. She distrusts her healthcare providers and is angry with them and her parents. She protests, “You already made me give up Snowy and my arm. What more do you want?” Her parents insist that treatment must continue. At the request of her physician, a psychologist and psychiatrist conduct a capacity assessment. They agree that H is incapable of making treatment decisions; her understanding of death is immature and her anxiety level very high. Nursing staff are reluctant to impose treatment. In the past, H's struggling and the need to restrain her caused them serious concern.

What is respectful involvement of children in medical decisions?

Respectful involvement of children in medical decisions requires respect for parental authority and family context as well as careful attention to the communicative and developing decisional needs and abilities of the child.