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News and Features Donor Advocacy Program Addresses Conflicts of Interest in Bone Marrow Transplants

In the five decades of hematopoietic stem cell transplantation, the process of choosing a bone marrow donor has occasionally been a tricky one - especially when the patient is a child. When a physician recommends that a young patient's sibling donate bone marrow, questions can arise about whether the physician is acting in the best interest of the potential donor and the family - rather than just the best interest of the patient.

Until recently, hospitals had no advocacy programs in place to help prevent donors from feeling they were little more than a source for bone marrow, instead of a full-fledged patient and person in their own right.

To address these issues, Children's Mercy Hospitals and Clinics developed a Donor Advocacy Program, which ensures each potential donor is examined by a general pediatrician and interviewed by a child life professional, both of whom are independent of the transplant team. These interviews take place before consent for donation is sought. The donor advocate determines what the sibling already knows, and clears up any misconceptions the sibling donor may have.

The advocate and the pediatrician then communicate any concerns to the medical team, and these concerns are addressed before the transplant process continues. Donor advocates speak for the donor but the ultimate decision about donation continues to rest with the parents and oncologists. 

Doug Myers, MD, a Pediatric Hematologist/Oncologist and an Associate Professor of Pediatrics at the UMKC School of Medicine, was part of the task force assembled to develop Children's Mercy Donor Advocacy Program, which was created to provide a process that - as much as possible - removed any and all conflicts of interest.

"We never want to harm one child to help another...but it's always possible that as a result of their devotion to the health of their patients, physicians can subconsciously be manipulative without realizing it," Dr. Myers says. "At all times we need to communicate to families that we care about their family, their relationships with each other, and all the family individuals involved - not just the well-being of our patients."

John Lantos, MD, Director of the Pediatric Bioethics Center at Children's Mercy and also part of the program's task force, says the hospital is at the leading edge in terms of recognizing the need for empathy and understanding of the donor's role in a bone marrow transplant.

Dr. Lantos adds, "We realize the need to constantly ask ourselves, 'If a given young person doesn't want to be a donor, can they comfortably express those feelings?' 'Are they experiencing distress related to the idea of being a donor, and if so are we being sufficiently attentive to their psychological needs?'"

Many of these concerns are handled by the hospital's Child Life team, which uses books, games and verbal interactions to help children deal with the stresses of the illness and donation process.

Further, the program maintains relationships with the families, particularly in cases where the recipient doesn't survive. Young donors often feel they were somehow partially responsible for their sibling's death.

"Our donors now have relationships with our advocates, who along with our social work team can follow up with them and see how they're doing," Dr. Lantos says.

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