The call had come. A donor was identified for 18-year-old Tim. His path to transplantation was not the smoothest, but in many ways, it was perhaps quite typical. He had received a diagnosis of Alport syndrome at a young age. Throughout his adolescence, his engagement was poor. He had received immunosuppressive therapy for a few years, with fluctuant drug levels. He often sat through appointments without his hearing aids and would provide very little independent information.
When renal replacement therapy loomed near, his mother was intent on a pre-emptive transplant. Immediately, we had concerns about nonadherence and subsequent graft failure. Tim’s case could easily become an unfortunate statistic, a lost transplant resulting from the defiance of youth (1, 2). His mother, affronted, cited his attendance at all appointments and the support of his parents as assurance of a successful transplant. In an almost fortunate turn of events, a history of substance abuse was revealed during Tim’s transplant evaluation. His insurance company imposed a six-month period of drug testing and close follow-up before approval for transplant would be granted. Independently, but with his parents’ support, Tim selected peritoneal dialysis for interim therapy.
In time, we did see behavioral changes. He would sit alone during his visits, he could recite his medication list, and he asked appropriate questions regarding his dialysis. At the end of six months, we felt confident that he was ready for transplantation.
When he was called for transplantation, his nephrologist happened to be out of town and was asked what he thought about transferring Tim’s care to the adult service now, because that service was going to care for him during his postoperative course. The nephrologist’s response was reflexive and immediate: “Absolutely not.” Tim had had such a tumultuous road to this point. He still needed our guidance, our close follow-up, our reassurance. His nurse practitioner advocated a pause. If Tim was ready to be listed for transplant, why exactly couldn’t he make the transition? It became clear to the nephrologist that his reservations about transition might have been a product of his own biases, not necessarily what was best for Tim. Reflecting on the struggles all pediatric subspecialists face in trying to take their young adult patients through the transition, we offer these thoughts.
We try to ensure the best outcomes for these patients, whom we have known for years—even decades. Yet, do we impede their progress by our desire to personally guide their care? Are we facilitators of their transition, or do we enable their delay?
Although an objective age cutoff is the policy for transition at many children’s hospitals, children with chronic illness do suffer from delays in neurocognitive development and memory impairment (3). Given the significant individual variations in maturity, the use of specific chronologic criteria for transition is too rigid. There are many ongoing efforts to sort out the best time and method for transition. Approaches are quite varied from hospital to hospital and even between providers at a single institution.
Some providers leave everything in the patient’s hands. “When they are ready to leave, they will let us know.” In some sense, this has merit. Indicating a desire to seek an adult provider is a strong affirmation of independence and responsibility. However, this can also lead to strange results, such as an encounter in my pediatric clinic of a patient bringing his wife to the visit and inquiring about erectile dysfunction medications.
Most pediatric subspecialists fall into a middle gray area. If we do not believe that administrative policy should dictate transition or that the decision should be left entirely to the patient, what degree of responsibility do we claim for the success of the transition and the outcome in our patient?
We are trained to loathe errors in our practice—and rightly so, given the dramatic consequences. We implement systems with multiple checkpoints, and we perform rigorous reporting and reviews of errors for prevention purposes. I wonder if a poor outcome in an adolescent who has undergone transition taps into our dread of errors. Our struggle with transition may well incorporate the challenge of identifying prevention strategies.
Most of us believe our intent is truly altruistic. We are genuinely bonded to our patients. A parental comparison is unavoidable. Some parents will cling to maintain control and protection over their young adult child’s life and decisions, whereas others will sever their responsibility abruptly, accepting mistakes and failures as part of life’s journey. Are we able to accept our patients’ mistakes and failures? Or do we look upon them as reflections of our own shortcomings and therefore strive endlessly to prevent them?
New tools and approaches to transition continue to abound. However, even with the best evaluations, we have all seen the “perfect patient” falter and the “lost cause” succeed. We are doubtful that our personal struggle from case to case will ever cease, nor should it.
Cecka JM, Gjertson DW, Terasaski PI. Pediatric renal transplantation: a review of the UNOS data. United Network for Organ Sharing. Pediatr Transplant 1997; 1:55–56.
Smith JM, Ho PL, McDonald RA. Renal transplant outcomes in adolescents: a report of the North American Pediatric Renal Transplant Cooperative Study. Pediatr Transplant 2002; 6:493–499.
Gipson DS, Hooper SR, Duquete PJ, et al.. Memory and executive functions in pediatric chronic kidney disease. Child Neuropsychol 2006; 6:391–405