Adding Life to the Adolescent's Years, Not Simply Years to the Adolescent's Life: The Integration of the Individualized Care Planning & Coordination Model and a Statutory Fallback Provision

Abstract

Yesterday Tyler had friends over playing x-box and rock band. They were laughing, joking, and the biggest question on their minds was will tomorrow be a snow day. Today Tyler is surrounded by a team of nurses and doctors injecting 5 different toxic chemotherapy drugs directly into his heart . . . . By 5:00 the side effects had already begun. I am continually amazed at how smoothly Tyler makes the transition between these two worlds. It is a sign of great strength and maturity. He does a far better job than I do . . . . It is an amazing and humbling thing when your greatest life lesson is taught to you by your own teenage son. The above passage was written by the parent of seventeen-year-old Tyler Alfriend, a patient with stage IV Burkitt's Lymphoma and Leukemia. Tyler's ability to balance these opposing worlds exemplifies the dignity and maturity exhibited by so many teenage patients coping with critical illness. For these young adults, their teen years are not the jaunty bridge between childhood and adulthood, a time during which teens discover their world without regard for mature considerations. Instead, the reality of their illness often results in fulminant entry into adulthood. While coping with the realization that they may not reach their next birthday, these teens also assume the responsibility of assuaging the grief of their families. Although there is never a good time in one's life to face a life-threatening illness, experts have recognized that the adolescent years may be among the hardest. Many physicians admit that critically ill adolescent patients are in a relative "no man's land." In many ways, adolescent patients are like pediatric patients, needing both emotional and physical support from their families. However, these patients are not children, and the maturity demonstrated by many teens warrants the medical decision-making autonomy given to adult patients. Take the case of Michael Miller, who at age sixteen was diagnosed with cancer so advanced that his treatment included fifty-one weeks of chemotherapy, radiation, and surgery. In the wake of his diagnosis and his parent's admitted hopelessness, Michael's physician stated that Michael showed maturity when he "calmed his parents' fears and helped them focus on the task ahead."