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Building Faith in Organ Donation

Betty Flowers, patient representative, and Melvin Dupree, advocate for families of donors
For the past 30 years, Betty Flowers has held on to the image of a blond boy. He's about 2 or 3 and running down the hall of the hospital. The laughing child, who, she'd learned, was waiting for a kidney, helped her to make an agonizing decision. When her own son, Everette Ball, succumbed to spinal meningitis at age 21/2, she donated his kidneys.

Flowers kept her decision a secret for many years. "In the African-American community, it was seen as a desecration of the body, and a lot of people wouldn't have understood," says Flowers, now a patient representative at Hopkins Hospital.

Today, for those who share those kinds of reservations, there is someone to talk to. Melvin Dupree, a second-year chaplaincy resident in Pastoral Care, is a family advocate, a hospital chaplain who in addition to his ministerial duties, specializes in the organ donor process. Family advocates provide comfort and support, and help a donor's loved ones deal with doctors and nurses and make difficult decisions. Dupree describes this work as "a calling." And one of his goals is to build confidence in these decisions among African Americans, who represent a disproportionate percentage of those on waiting lists for donated organs. (While there is a perception that blacks are responsible for fewer donations, in fact, about 12 percent of organ and tissue donors in the United States are African Americans, about the same as their representation in the population at large.)

"Trust is an important part of the ministry," says Dupree, recalling an East Baltimore family initially reluctant to have their son "cut up" after he died. "I told them I would stay in the operating room to ensure that he was treated with dignity." While it is not common practice for a family advocate to attend such procedures, Dupree was present throughout the organ recovery, sent into the OR with the father's admonishment: "Look after my boy."

While family advocates, who are on call 24 hours a day, are not the first to bring up the concept of organ donation-that is the task of the doctor and/or a representative of the Transplant Resource Center-they are instrumental in helping families understand the value of this final act. Rosemary Lillis, program coordinator for the hospital's Family Communications and Organ and Tissue Donation, trains people like Dupree. She says she never has had a family turn down her offer of emotional and spiritual support and believes that family advocates, as representatives of the clergy, help to build trust.

At Hopkins Hospital, only about 30 percent of those who die and are subsequently deemed medically suitable to become organ donors actually have organs recovered for transplant or research. The figure is far below the national average of 46 percent. Seeking to boost the numbers, the Health Resources and Services Administration in 1999 awarded Hopkins Hospital a three-year grant for nearly $1 million to train hospital staff on the sensitive subject of working with families of potential donors. That grant recently was extended for three more years with another $1 million.

A couple of years ago, in fall 2001, a "donor wall" was put up not far from Hurd Hall. Organ donors are listed chronologically, according to records dating to the early 1990s, except for the first name: Everette M. Ball, who died in 1970. His name was included at the behest of Flowers. Her little boy was not the first to donate organs at the hospital, but his name, proudly displayed on this commemorative list, is significant. The child's final act has grown in his mother's heart from a source of potential shame to one of pride.

-Martha Thomas



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