‘Literally Matters of Life and Death’ : Coordinators Ask Families to Donate Organs

Marty Walker sees himself as somewhat like a salesman.

He wants people to trust him and understand he’s sincere. He tries to get to know them and their families in a short time. He outlines the product and the process. He works gently to answer their doubts.

“If it’s the type of family that I cry with, that’s fine,” Walker said, in the soft accent of eastern Tennessee. “If there’s not much emotion, that’s fine. I try to get as close to them as I can--or as close as they will let me.”

Walker’s clients are the relatives of those close to death. His purpose is to persuade them to give something up. Perhaps a liver, two kidneys, maybe a heart. Then Walker will arrange to give it to someone else.

Marty Walker is an “organ transplant coordinator.”

This week, he and several hundred other coordinators and transplant specialists from across the country met in San Diego to discuss the scientific, legal and ethical questions complicating their rapidly expanding field.

They talked about who decides if a transplant is worthwhile and how best to distribute scarce organs. They discussed how and when to protect the participants’ anonymity and how they feel when a transplant fails.

In San Diego, controversy over organ transplantation surfaced in November, 1983, when doctors at Sharp Memorial Community Hospital performed the area’s first liver transplant, considered a milestone because of the complexity of the organ.

Last fall, a doctor at Loma Linda University Medical Center transplanted a baboon’s heart into a newborn girl. The child, Baby Fae, died after three weeks. But questions about the experimental nature of some transplantation have persisted.

“I think the donor coordinator has a rather difficult, crucial role,” said John Kiernan, a coordinator from New York City. “It’s a job that has tremendous rewards that are very hard-won. It really demands that the coordinator develop the highest ethical sensibilities.”

They work for hospitals or nonprofit agencies, sometimes referred to as “harvesting agencies.” They spend part of their time discussing organ donation with doctors and the general public, and the rest acting as a kind of transplant middleman.

Perhaps once a week, Walker receives a referral--a call from a doctor or nurse who has a patient who is brain dead. Machines keep the patient’s organs functioning while Walker is introduced to the family.

“I say, ‘Hi, I’m here to offer you something,’ ” explained Walker, an amiable 31-year-old former nurse whose sister once had a cornea transplant. “I say, ‘I don’t want to take anything from you. But I would like you to consider organ donation.’ ”

Rose A. Curtis, a coordinator at a hospital in Rochester, N.Y., tries to meet with families in a room without hospital equipment. Perhaps there is a plant or two in the room. She always brings a box of Kleenex.

They encourage the family to describe the dead relative. If the person was a giving person, they suggest, he or she could still be giving, even in death. They might donate their corneas, kidneys, heart, lungs, skin, pancreas and/or bone.

“It’s a difficult time because they’re under extreme stress: Often they’re angry, they see it as an invasion of privacy, a disfigurement, an immoral thing,” Curtis said. “Some people will say, ‘I think this is terrible. I don’t want any part of it.’ ”

The most common fear is that the body will be mutilated, Walker said. But he said organ removal is not visible and bones can be substituted. “An open-casket funeral can still be held,” he said. “There is no body disfigurement.”

Other families have religious objections, common in the rural areas and Bible Belt where Walker works. He counters by quoting the Bible on the “new body” in heaven. He said he has some trouble explaining Lazarus, whom Jesus is said to have raised from the dead.

Some families remain unconvinced that the relative is dead. They may point out that they knew of someone who recovered after two years in a coma. They may want to see the body and be shown that the person can no longer breathe on their own, Walker said.

In the end, Walker and Curtis said, more than 75% of families who are asked agree to give.

At that point, Walker goes to the nearest touch-tone telephone. He calls one of the two nationwide, computerized, transplant networks. He punches in the age, sex and blood type of the donor, and which organs will be available.

The computer then lists compatible people needing those organs, the urgency of their condition and the phone numbers of their transplant centers. Walker begins with the most urgent case, calls the coordinator at that center and arranges a transplant.

Then surgeons fly in and remove the organs, while the recipient is being readied on the other end. The organs are often carried on commercial airlines, double-wrapped in sterile plastic and sitting on ice in a styrofoam cooler.

Finally, Curtis, a former dialysis nurse, returns to the operating room to help the staff prepare the body for the morgue. The process may have taken 24 to 36 hours.

The stakes in the coordinator’s job are very high.

If the organ is not “retrieved” at the right time, the recipient could die. If the coordinator’s evaluation is wrong, the organ could damage the recipient’s health. Finally, drugs used in transplantation put the recipient at grave risk of infection.

“I believe that anyone in the health professions has to examine everything they do continuously, and I am concerned that we adhere to the highest standards available,” Kiernan said. “The consequences of our work are literally matters of life and death.”

In most cases, the family and the recipient never know who was on the other end.

Curtis writes to the family of the donor shortly after the operation, thanking them and briefly describing the recipients of the organs. Walker said he writes then and six months later, saying how the recipients are getting along.

He recalled being in a shoe store recently and running into the mother of a 15-year-old girl who had donated all her organs. Walker said they hugged, then talked about the case. Walker told the woman about the condition of the recipients.

Finally, according to Walker, the clerk asked, “One person helped all those people?” The mother looked up proudly and said, “Yes. It was my daughter.”

That is the source of the job’s satisfaction, Walker and others said.

“I love what I’m doing right now,” he said. “Because I’m hopefully able to help a family through a terrible time of their lives, helping them realize that part of a loved one can live on indefinitely in someone else.”