You Gotta Have Heart
by Maryann Brinley
Three of UMDNJ’s principal teaching hospitals —
UMDNJ-University Hospital in Newark, Robert Wood Johnson
University Hospital in New Brunswick and Cooper University Hospital
in Camden — rank at the top of statewide statistical charts for organ donation. Because a single donor can transform the health of more than 50 people
(possibly 70) — hearts, lungs, kidneys, livers, corneas, valves, veins, bones,
tendons, ligaments and skin are all used to rebuild bodies in distress — family support teams at these hospitals, working with the New Jersey Organ and Tissue Sharing Network, understand intimately just how far their words and actions can
reach. In fact, in April, University Hospital received the Top Organ
Donor Hospital Award for the state of New Jersey in 2006.
But it’s not just about the organs and tissue donations.
n Labor Day weekend in 2005, Annie Imes made one of the most difficult decisions in her life as a mother at UMDNJ-University Hospital (UH). “Terrence was just such a wonderful son. He had the kind of marvelous personality that everybody – his son and daughter, our family, his friends, co-workers, even kids who sang with him in the choir back in grammar school — I mean everybody… everybody just loved him. Since his death, I’ve had big guys — one man was seven foot tall and probably 300 pounds — come crying on my shoulder about what happened. Picture that,” she asks and then pauses to apologize. “Sorry if I get a little teary here.”
Patricia Murphy, PhD, an advanced practice nurse for ethics and bereavement at UH, knows all about this mother’s experience. A clinical associate professor at UMDNJ’s New Jersey Medical School (NJMS) and School of Nursing (SN), Murphy leads a support team whose mission is to shepherd families through trauma. “I meet them in the emergency room and stay with them all through the hospitalization, hoping and praying that this person who’s been injured stays alive. We share an instant sense of connectedness.” In a typical week, because it is a Level 1 Trauma Center, UH treats patients of all ages with life-threatening injuries. They arrive by ambulance and helicopter having experienced motor vehicle accidents, industrial catastrophes, falls and interpersonal violence. “Our goal is to take care of the family of the victim, to educate them, and to develop a level of trust,” Murphy explains. “We’re not here to get organs. I want these patients to get better and go home, but sometimes in trauma, that doesn’t happen.”
Thirty-five-year-old Terrence Imes spent time on a September Sunday morning two years ago chatting with his mother after she returned from church services. The Imeses own a two-family house in Irvington and one of their two sons, Terrence, lived upstairs from his mother and dad. “We just had the greatest conversation before he went off to play basketball with a group of guys in the park,” she recalls. “That was the last time I saw him alive.”
After the game, Terrence celebrated the holiday at a friend’s barbecue and around 11 pm, as the group was breaking up, in a freak accident, he fell down the basement stairs. “He must have missed a step and banged something on the way down. By the time he hit that cement floor at the bottom,” his injuries were devastating, this mother explains. But he was still breathing. Hours later, surrounded by friends and family members who couldn’t bear to leave the hospital visitors’ area, as Terrence showed signs of brain death that became difficult to ignore, Annie and her husband found themselves resisting the very idea of donating his organs. When physicians had done everything they possibly could for Terrence and declared him dead, the family faced their difficult decision.
Annie Imes remembers thinking: “No way. No how. Not my child. This is not an easy thing to consider. I was saying, ‘He’s taking everything with him when he goes. Don’t even talk to us about anything else.’ I guess I’m a little headstrong.”
When it comes to organ donation, they were typical of most people, Murphy explains. “The first response is often NO, NO, NO.”
Imes worked at Newark’s Beth Israel Hospital at the time. She even recognized a NJ Sharing Network representative at UH that long night. A private, nonprofit, organ procurement organization (OPO) that works with donors and recipients — who are registered and ranked with a nationwide United Network for Organ Sharing (UNOS) center staffed 24 hours a day all year — this network coordinates everything from consulting with the grieving families to managing the medical community in the matching, transporting and sharing of organs.
“I already knew everything we were being told by the network coordinator,” Annie Imes admits, but she didn’t want to listen then. Terrence himself had been a supervisor in the receiving department of Beth Israel so here was a family who understood hospital life intimately.
Murphy explains, “There is so much pain for the family. It is impossible to make that pain any less.” But, she and her NJMS-UH team members Janet Harris Smith, MS, Susan McVicker, MS, Susanne R. Walther, APN, and senior transplant coordinator from the NJ Sharing Network, Oscar V. Colon, RN, CPTC, have seen the emotional comfort donor families receive in the long-run from organ donation. (The Sharing Network also has transplant coordinators like Colon who work on site at Robert Wood Johnson University Hospital in New Brunswick and Cooper University Hospital in Camden.)
“The most important thing to understand about grief,” according to Smith, “is that there are no hard-edged facts about it.” Certified in bereavement counseling, Smith says, “Grief can come in waves. Have you ever been in the ocean? Every now and then a wave just comes and knocks you down. We’re here to help people at their most vulnerable time. If they make the decision to donate, we know it will help them in six months, six years or maybe even 20 years later. To know that some concrete good can come from the loss of their loved one. How could it not help?”
All families in distress are different. Sometimes difficult conversations about donating a dying person’s organs start simply, Murphy explains. “I might say, ‘Now tell me about Jim. What was he like? What were his goals in life? What did he like to do? Was he a generous person? What would he want his legacy to be?” Colon has even been trained to read body language. “I want to be able to answer questions in a way the family can understand so I focus on how they interact, what they say or don’t say. People process information differently,” he says. “Some are visual, while others need a kinesthetic or auditory approach.”
Colon will match the style of his information session to the family, applying no pressure, just offering education. For instance, many people have concerns about exactly what constitutes brain death or the condition of the body after surgeons have removed organs. “This all takes a lot of skill,” says Murphy, who has worked in bereavement since 1979. “Sometimes visual aids will demonstrate the difference between a normal brain and one which is dead.” An angiogram can show them the lack of blood flow, extremely minimal brain activity, and swelling. Yet, as Murphy points out, “It is always hard to look at someone whose heart is still beating and whose chest is going up and down” and think that this life is over.
The transplant coordinator may describe how the process is not very different from an autopsy, often required for trauma victims anyway. Annie Imes, for instance, was concerned about Terrence being disfigured. “I wanted him to look good at the burial services.” She learned that donated organs are removed surgically in a routine operation that would not change his appearance. “It is all completed very respectfully within a matter of hours. The family can still have a viewing,” Murphy adds.
Annie Imes started to change her mind. “I stood over Terrence’s bed. He looked so peaceful. My son was just too young to leave this world without any other legacy except his children.” Terrence’s daughter Nadia is 10 and his son, Terrence Kyle Imes, is 17. “All of a sudden, an unexplainable peace came over me. I knew we had to do this. Donating his organs would prolong his living… in someone else.”
“There aren’t any words you can say to a parent at times like that,” Smith explains. “Crying together is perfectly fine.” Meanwhile, the Imes family has received four letters from recipients of Terrence’s organs. “The first one was from a father who was so appreciative and understanding of how hard it was for us to do this. He has kids of his own. When I get really down now, I pull out all four letters to read. It’s as if he’s living on inside these people. She hasn’t written back just yet. “Every time I sit down to write…” something stops her. However, as a grandmother, last fall she encouraged Terrence’s daughter Nadia to create a tribute to her father for a memorial service, in recognition of donor families, sponsored by the Sharing Network.
As a result of our story and the coordination by the NJ Organ Sharing Network, Annie Imes met Joe LaGaipa, the Neptune, NJ, father who received her son’s heart. Nothing stopped her on April 28th from experienceing tears of pain and joy.
In 2006, 162 New Jersey families came to the same kind of heart-wrenching conclusion as Annie Imes. In fact, it happened 51 times in UMDNJ’s principal teaching hospitals, turning overwhelming grief into life-saving rescues for hundreds, maybe even thousands, of recipients.
|A Complex Lifeline
Approximately 90,000 Americans are registered and on a waiting list at the United Network for Organ Sharing (UNOS). This system was launched on October 25, 1999 to register patients, match organs and manage the time-sensitive, medically critical data of all patients, before, during and after their transplants. When an organ becomes available, a computer program generates the list of potential recipients ranked by blood and tissue type, size of organ, medical urgency of patient, time on waiting list, and distance between donor and recipient. Ethnicity, gender, religion and financial status are not in this computer mix of ingredients. Organ Procurement Organizations (OPO), like the NJ Sharing Network, coordinate all the logistics and all costs are billed directly to the OPO.