Bioethics Mediation: A Guide to Shaping Shared Solutions, Revised and Expanded Edition

13. Treating the Dying Adolescent: A Role-Play

189 13 Treating the Dying Adolescent: A Role-Play General Instructions All players should read the general instructions. Before beginning, teachers should review “Using the Role-Plays” in the introduction to Part V. Parties Mr. and Mrs. Ajuba, patient’s parents H. Albright, social worker Dr. K. Salazar, oncologist Bioethics mediator L. Harper, risk manager Background Lucy is a seventeen-year-old Kenyan female who was diagnosed with cancer eighteen months ago. At the time of diagnosis, the cancer had invaded one kidney and metastasized to bones, lungs, liver, and aorta; Lucy’s prognosis was fairly poor given the extent of the metastases. Lucy underwent surgery to remove the diseased kidney six months prior to this hospitalization. She began a nonexperimental course of chemotherapy, but she showed no improvement. She was therefore placed on an experimental chemotherapy protocol. A scan done two months ago showed new metastases in her shoulders and bones. By the time of her admission, Lucy was experiencing significant abdominal pain, most of which could be controlled through the use of an analgesic patch. Shortly after her admission, her pain problems increased, and Lucy was admitted to the Pediatric Intensive Care Unit (PICU) in renal failure. She continued to experience significant pain, which was again controlled with an analgesic patch. During her stay in the PICU, she was often very restless and unable to lie still, even though every movement was painful. She was also terrified because she was clearly getting worse instead of better. In addition, her abdomen had become quite distended. She repeatedly asked why her “belly” was “so big.” After a few days in the PICU, she was stabilized and transferred back to the ward, but her remaining kidney was, in the words of her oncologist, “a disaster.” Lucy is emotionally immature for her age and unusually dependent on her par- 190 Bioethics Mediation: A Guide to Shaping Shared Solutions ents, especially her mother. Both of Lucy’s parents have been involved in her care from the beginning. They are both very religious and have repeatedly expressed their faith that God will cure their child. They lost their only other child to malaria before they moved to the United States. Her father has described Lucy’s illness as a “white man’s disease.” From the time of diagnosis to the present, both Lucy’s parents have insisted that she be told nothing about her prognosis or her medical status . Nonetheless, Lucy has given some indications that she is aware that her disease is serious and, more recently, that she is terminally ill. Throughout the course of her illness, Lucy’s father has insisted that she receive all possible treatment to keep her alive. Lucy’s mother has not opposed her husband’s orders but is generally more accepting of her daughter’s condition and prognosis. Shortly after Lucy was transferred out of the PICU, her oncologist, Dr. K. Salazar, stated that a do-not-resuscitate (DNR) order would be appropriate, that her tumors needed to be reevaluated, and that it was probably inappropriate to continue curative treatment. Dr. Salazar therefore raised the subject with Lucy’s parents. After considerable reluctance, the parents agreed to the order. The following day, however, the parents rescinded the order, and there was some indication that Lucy’s father had pressured his wife into this action. Now, a few days later, significant changes have begun to occur in Lucy’s condition . It has deteriorated and worsened to the point that she has had to be readmitted to the PICU and intubated. In the PICU she has continued to deteriorate, and within the past twenty-four hours she has experienced four episodes in which her blood pressure has fallen to a dangerously low point, each of which was treated aggressively. She is receiving escalating support to maintain respiration, blood pressure , and other vital signs. In addition, her level of pain and discomfort requires heavy sedation. The Request for Mediation The treating team, including physicians, nurses, and social workers, is concerned about the appropriateness of continuing aggressive curative treatment. Lucy’s oncologist has sought a clinical ethics consultation to discuss appropriate treatment. A meeting has been set up to discuss the case. Treating the Dying Adolescent: A Role-Play 191 Treating the Dying Adolescent: Bioethics Simulation Confidential instructions for MR. AJUBA, patient’s father (Please do not show these instructions to the other participants.) Your faith is strong. You...