Mind, body, and spirit

The case A 31-year-old African American with Down's syndrome developed end-stage renal disease 8 years ago and has been maintained on peritoneal dialysis (PD) since then. He lives with his parents, who are quite devoted and lovingly care for all his needs at home. He does well with PD, but it is cumbersome and time consuming. Several years ago, the patient was evaluated for a kidney transplant and placed on the transplant list. The parents are Jehovah's Witnesses, and the family is quite active in the religious community. They consider their son to be a Jehovah's Witness, as well. He participates in church activities and gets great pleasure from singing in church and his involvement in the community. He has limited cognitive ability and has the intellectual capacity of a young school-aged child. During his perioperative evaluation, he is watching Sesame Street. On initial evaluation by the transplant team, the family is clear that their son is unwilling to accept blood products. The transplant team assures them that “bloodless” kidney transplants are done routinely and that this will not be a problem. The options of preoperative hemoglobin supplementation with intravenous iron or erythropoietin are never discussed. The team tells the parents that they will need legal papers establishing guardianship of their son because of his adult status. They obtain a short statement from the court indicating that they are the guardians of their son; however, it does not elaborate specific circumstances, including medical decision making.