Giving When It Hurts | Feature | Chicago Reader

Giving When It Hurts 

Despite suspicions in the African-American community about organ donation, Jack Lynch is turning the endless cycle of gang violence into the opportunity of several lifetimes.

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It's late Monday morning and Jack Lynch is on call. His pager beeps, interrupting his snack of coffee and chocolate cake from Debra's Dough at Dearborn Station. He reads the messages from his pager out loud over the cheerful jazz music that fills the atrium. "Twenty-six-year-old African-American male gunshot wound to the head...37-year-old African-American male head trauma." Lynch lowers his head with a sudden weariness. "I get these types of pages five to seven times a week, and 75 percent of the time these people are victims of some kind of social trauma. Preventable deaths."

By social trauma, Lynch means drive-by shooting victims, or new gang recruits who get hit one too many times during the initiation beating. The people who end up in trauma rooms with these kinds of head injuries are often poor, often black. And they often end up brain-dead, which makes them eligible for organ donation.

That's where Lynch steps in. As director of family support services for the Regional Organ Bank of Illinois, Lynch is part medical-establishment ally, part family counselor. It is his job to gain consent from families for hospitals to take their loved ones' organs. Lynch counsels only black families--a segment of the population with a reputation for being suspicious of the process of organ donation. But where the 2000 national consent rate for African-Americans was not quite 50 percent, ROBI's consent rate for African-Americans--with Lynch at the helm of its small staff of requesters--was 68 percent.

Now in his car, Lynch holds his cell phone in one hand and the steering wheel in the other. His seat belt hangs unused beside him. He's driving a shiny black Benz with sunroof, leather interior, and plates that read KID NEE 1 toward a west-side hospital where the two cases are pending. He knows the streets well. His career in organ recovery started on this side of town.

In 1986, Lynch was a sales rep for Sandoz Pharmaceuticals. He was promoting a new antirejection drug for organ transplant recipients when he saw a Channel Seven news report by Harry Porterfield on hypertension and organ failure and their impact on African-Americans. "Near the end, there was a female who had been on dialysis seven years, waiting on a kidney for five years," Lynch says. Considering the number of people with viable organs who died every year, the woman's situation made no sense to him. "I didn't know that the people had to be dead in a particular way, that they had to be brain-dead. And that you had to get consent from the family."

Though some healthy tissues--skin, bones, corneas, heart valves--can be used no matter how the donor dies, only people declared brain-dead are considered potential organ donors. Brain deaths--most often caused by blunt head trauma, gunshot wounds to the head, and intracranial hemorrhages or strokes--represent a relatively small number of deaths annually. Most people are pronounced dead when their heart and lungs stop working on their own. Brain death occurs when the brain shuts down before the heart, lungs, and other vital organs stop working. Without messages from the brain, these organs will eventually weaken and fail, but by attaching brain-dead patients to respiratory support doctors can usually keep them viable long enough to transplant.

Even if someone signs the back of his or her driver's license, family members have to consent before the organ recovery process can begin. In the mid-80s, black families had a reputation within the medical community for refusing to donate. This was in spite of their disproportionate need for transplants. (As recently as 1999, for example, African-Americans made up 35 percent of the waiting list for kidney transplants.)

Lynch could not accept the reality of thousands of black people slowly dying of organ failure while the medical community and the media approached black organ donation as a lost cause. He began to do his own research. He had conversations with specialists from across the country. And in the summer of 1986 he spent his Friday and Saturday nights in the emergency room of Cook County Hospital, watching people.

Though almost 16 years have passed, Lynch has seen little change in the waiting rooms at Cook County Hospital. Then as now, the very young and the very old waited together to be seen. Dusty floor fans blew air in a single direction to compensate for the weak air-conditioning, merely muting the collective warmth of the bodies packed side by side for hours on end. Lynch watched as one distraught family after another, usually poor and unfamiliar with medical jargon, absently nodded their heads while doctors, usually white, tried to explain the brain death of their loved ones. They'd wait to mention organ donation until the end of the speech. "I'm required by law to ask you this," they would say (as in "This isn't my idea, so please don't kill me"). "Would you be willing to donate the organs?"

Organ donation was the last thing a family wanted to discuss after hours of waiting and feeling ignored. The answer was usually no. But even after watching processions of doctors, nurses, and clergy members fail to gain consent, Lynch was not discouraged. He saw a pattern and formed a theory from it. "Families were being talked at by people who believed that they had covered all the necessary bases and, in fact, were just giving information." He concluded that the keys to a successful approach were better communication skills ("mastering the art of talking with, not talking at") and forethought ("you need to have a game plan instead of just a voice").

After seven weeks of eight- to ten-hour stretches in the waiting room, Lynch had come up with a short list of dos and don'ts for organ requesting: Don't take your preconceived contentions into a room. Don't exclude family members and friends from the discussion. Don't make the mistake of interpreting the body language of family members. Listen to yourself.

Now all he needed was someone to listen to him.

Lynch claims to be in a hurry when he arrives at the hospital, but he still finds time to share a group hug with two nurses on his way to the ER. He walks down a hallway, passing through two sets of double doors, and shows the security guard his visitor pass and the ROBI ID attached to the bottom of his suit jacket. "Organ recovery team," he says, like an FBI agent brandishing a badge. The guard buzzes him through. Doctors, nurses, and orderlies dash around, hardly looking up from their charts, computers, or patients; some sixth sense tells them when someone is in their path and they either step aside or murmur an "excuse me." Death, trauma, and sickness are visible all around: A toddler with a nail through her eyelid. An unconscious man with gauze around his head, bright red blood bleeding through. Over the beeps of medical machinery, a man who had been checked in for a mental evaluation yells at no one in particular, "Helloooo. Helloooo. Get up off your ass!" Some of the patients stare openly at Lynch, who glides across the ER, shoulders back, taking it all in with a single glance. He's the only man in the room in a suit and tie ("I don't endorse casual"), and he attracts attention like Michigan Avenue attracts tourists.

Justin Gaeta, an organ recovery coordinator for ROBI, is waiting for Lynch in the central area of the ER. Gaeta's job is to oversee the clinical side of organ recovery, from consulting with doctors over an impending declaration of brain death to evaluating the viability of organs and matching them with waiting patients to observing organ-retrieval surgeries. He has been at the hospital for only about 2 hours when Lynch arrives, but he could be there for another 10 or 20 depending on the progress of the case.

Gaeta updates Lynch on the status of the gunshot patient, pointing toward the unconscious man bleeding through the gauze wrapped around his head. They're waiting for a declaration from the doctors. Lynch sits down behind a desk in the control center of the ER and familiarizes himself with the patient's chart. He asks Gaeta a few questions, makes a phone call or two, and teases the nurses while Gaeta works with the doctors. Lynch is a bottle of barely contained energy, growing more and more impatient as the minutes pass into hours. He cannot sit still.

"He made me nervous at first," admits Jerry Anderson, CEO of ROBI, with an embarrassed smile. "He's kind of a salesman, and he can be so enthusiastic about things. I was wondering if the guy was crazy or something. He was working on this and nobody was asking him to. He wasn't getting paid."

Some might call it fate that Lynch and ROBI crossed paths just as everything was beginning to change in the field of organ donation and transplantation. ROBI barely existed the summer Lynch spent at Cook County Hospital's trauma center.

In 1984 Congress passed the National Organ Transplant Act, which called for the formation of a task force to regulate a national organ donation process. Before 1984, according to Anderson, organ donation was often handled by individual transplant centers. Community hospitals would contact the assigned center whenever they had a potential donor. The problem with the system was that transplant centers would take care of the needs of their patients first, even if there were patients elsewhere in the region who were more ill. In 1986 the task force established a national system of organ allocation to be monitored by the United Network for Organ Sharing, which organized a national waiting list, and the Organ Procurement and Transplantation Network, which coordinates local organ recovery activities.

ROBI was one of those agencies.

A small part of the federal grant that ROBI received in order to become operational was allocated to increasing the donation rate in the minority community. "A lot of people said, 'They just aren't going to donate at the same rate,' but I heard about this fellow named Jack Lynch who was interested in this," says Anderson. He invited Lynch to a meeting in the early months of 1987.

At the time, the only essential staff members for any regional organ bank were organ recovery coordinators (like Gaeta) and lab workers. And there were very few black people in the field. "The exception to that almost right away was Lynch," Anderson says. When ROBI opened in the summer of 1987, Lynch left his job at Sandoz and became the only designated requester on staff. "Lynch was really the first person in the country to do this thing, and he was successful. Not successful in just getting people to say yes to organ donation, but [in] educating people about organ donation."

"They armed me with a phone and a pager and told me to go home," says Lynch about the early days at ROBI. "They would call me if someone black was a potential organ donor." Even then he knew a phone and pager would not be enough to remedy all of the issues that kept black people from donating their organs. "It was wrong just to have someone of color approach a family simply based on the fact that [because] they're black they're supposed to understand."

Lynch's instincts were right. According to studies by Dr. Clive Callender, founder of the Minority Organ Tissue Transplant Education Program, there are five reasons why black people are usually unwilling to donate: lack of awareness, religious beliefs, distrust of the medical community, fear that doctors will not work as hard to save someone who has signed a donor card, and fear that their organs will go only to whites.

In fact, none of the major religions practiced by African-Americans bars organ donation. Many of them, including AME and Baptist churches, even have official policy statements and resolutions that openly support organ donation "as an act of neighborly love and charity." But there's plenty of historical cause for blacks to distrust the white medical community. Take Saartjie Baartman, the African bushwoman otherwise known as the "Hottentot Venus," who in the early 19th century was exploited as a specimen to be poked and prodded in an effort to prove black inferiority. Or the slave women used by J. Marion Sims, the "father of gynecology," for his experimental surgeries. The Tuskegee Syphilis Study (1932-'72), in which hundreds of black men were denied treatment for syphilis so that scientists could study the natural progress of the disease, is an incident many African-Americans remember and invoke when they are addressed about organ donation. (For all of these reasons, they are also hesitant to participate in medical studies that might help to combat illnesses like diabetes and hypertension, which disproportionately affect the black community and may eventually lead to organ failure.)

Based on his observations in the Cook County Hospital waiting room, Lynch had written a set of guidelines for health-care workers who approached families for organ donation, but he now concluded that those guidelines only solved half the problem--the other half of the responsibility belonged to the black community. Misinformation and myths could be dispelled only from the inside. "It's OK [for black people] to point the finger, but understand that you'll have three more pointed at you," Lynch says. He maintained that black families, given accurate information, would be no less willing to donate than white families, but he realized that in order to educate black people about the benefits of organ donation without being dismissive of their concerns, he would have to do grassroots outreach. His idea was to go into churches and public housing projects and empower representatives within those communities to educate their associates, families, and friends. He wanted to turn organ donation into a household conversation.

Anderson was skeptical about the campaign Lynch proposed, but he humored him. "Since he worked all the time anyhow, I said, 'As long as you do your main job, you can do that, too.' I didn't really expect any success from him working in the community. Jack maintained, 'If you educate 'em, they'll be like everybody else. They need to be given the opportunity.' We moved up from our 8 percent black consent rate to 27, 28 percent pretty quickly when Jack got involved."

Not able to wait in the ER any longer, Lynch goes upstairs to the quieter, calmer surgical intensive care unit to check on another patient. Though it has been nearly a week since he was brought in after a beating that caused massive head injuries, brain death has not been declared, and there is a threat of infection setting in, which would make his organs unusable when and if the doctors declared him brain-dead. Frustrated, but not quite enough to let it get in the way of making nice with the hospital staff, he chats with the ward secretary. Lynch claims that she is an expert at uncovering the history and dynamics of a family. What is the mother like? Who is the girlfriend? Who is the most upset? This kind of information helps him do his job better.

"How are you doing?" he asks the secretary.

"Oh, I'm fine," she says.

"I know you're fine," he jokes. "But how are you doing?"

She laughs at his back as he leaves the unit, saying she wants that one on paper.

Many of Lynch's sentences begin with "And I thought, wouldn't it be a great idea if...?" It's because of his "great" ideas that his responsibilities have become more and more numerous. He has moved from being ROBI's community liaison to its community specialist to its manager of community affairs to his current position as director of community affairs. He oversees the proceedings of ROBI's African-American Task Force, speaks at churches, appears on black radio shows, and advises elected officials on issues related to organ donation. ROBI has a communications department and community and hospital outreach programs, but Lynch lives as if it's all his responsibility. He is a one-man PR machine and, on top of all that, requests 75 to 80 cases a year.

"He made himself very known in the public," says Evelyn Schultz, ROBI's director of organ recovery services. "Then when [black families] would see him walk into the room, they would say, 'I know who you are. I saw you at church on Sunday. Are you here to talk to me?' It's gotten to the point where coordinators will go out with Lynch and they just know that they're going to get a yes."

"Some people might think of him as an organ harvester, but that's not the case," says his wife, Tanya. "Jack does his job well and with dignity and love and pride. He does not beg for organs. He tries to inform each family of what is going on in terminology that they can understand. And he will explain all of that. And cry. And grieve with them, too. And they get the sense that hey, somebody cares. This is nothing fake." She recalls days he had to work on a child case and called her at work or home for moral support. He has helped families with funeral arrangements, allowed them to use his cars in processions, used his own money to pay for hotel rooms for family members from out of town. "ROBI is not supplying that," Tanya says. "A lot of this is done by him."

She didn't know what to expect when ROBI hired her husband, but now she says, "It's really like being married to a doctor. We have been to affairs with tuxes and gowns and had to go in to emergency. At first it was very hard for me to adapt, but knowing it's for a good cause, I've adjusted."

"Relaxation to me is just being able to go grocery shopping with my wife and not have two pagers and a phone attached to my hip," Lynch says. He might see his wife when they wake up in the morning, but not again until seven the next morning. Their seven-year-old granddaughter lives with them, but with her eight o'clock bedtime he hardly sees her awake during busy weeks. "I never get in before 9:30 on a good day, but there's always a note from her on my side of the bed."

His wife does admit to being upset that Lynch doesn't use his vacation days, and she worries about his health. Running from this meeting to that event to this interview to that hospital with little leisure time and eating unhealthy meals on the go have resulted in an inflammation of Lynch's small intestine. He also has high blood pressure, one of the health problems that can eventually lead to organ failure, and one that he is often warning other black people about. "Those are signs that you need to slow down," his wife tells him. "You're not God. You can only do so much. And you have to remember that you have a family at home. I don't want to be on the other side with somebody asking me for your organs."

Back in the ER, Lynch is waiting, asking more questions, making more phone calls, joking more with the nurses. But when Gaeta returns to his side saying, "We've got brain death," Lynch is instantly focused. His first step is to find out everything there is to know about the dynamics of the family. He wants to know who the players are, what they've asked, whom they've spoken with, and how they've been responded to.

One of the nurses tells Lynch that a representative from Cook County's Victim-Witness Assistance Program broached the subject of funeral arrangements and organ donation before the potential donor was officially declared brain-dead. Both Lynch and Gaeta shake their heads at that. They usually don't like anyone but ROBI workers talking to families about organ donation. "If I'm going to screw something up, I'd rather screw it up myself," Lynch says.

"They say there are 30 people waiting out there," says Gaeta, referring to the family.

"I don't want to talk to them!" says Lynch. "Too many cooks," he grumbles, worried that his approach won't work. He is calmed when a nurse tells him that the mother and closest relatives are alone in the chapel/meditation room, accompanied by their pastor, cutting the number of decision makers down to a manageable eight or nine.

Capitalizing on the presence of the family's pastor, Lynch asks to speak with him first. He doesn't really need the man's help, but wants to make sure that he isn't going to hinder his efforts. The nurse most familiar with the family brings back an older man in a green suit. In the short hall off the central area, Lynch explains the patient's condition over the screams of the mental case ("Hellooooo! Hellooooo!"). The pastor nods. He tells Lynch which relatives are in the chapel--mother, sisters, aunts--and assures Lynch that the family is calm, and that he will at least be neutral when it comes to the mention of organ donation. That's all Lynch needs to know. He thanks the pastor.

The plan is set. The doctors and nurses will go in first to inform the family of the patient's condition, and then Lynch will be brought in to speak with them. He exits the ER with the medical staff, but holds back when they enter the chapel. Lynch stands alone in the quiet hallway, waiting in front of the automatic doors that lead into the ER from outside. Two men walk in. The doors slide open. Closed. A woman quickly walks past. Open. Close.

"This is the part that makes me most anxious," Lynch says. He is worried about what's going on in the chapel. An errant phrase can change everything. Lynch has been able to confer with everyone else who has talked to the family--the nurses, the counselor from the Victim-Witness Assistance Program. But he has no control over what the doctors tell them.

Finally, one of the attending nurses comes to get Lynch. Her evaluation of the family is important. Her tone will determine how he addresses the family. "How are they?" he asks.

"Oh, they're OK," she says lightly. That's a good sign.

Lynch enters the chapel as the doctors exit. The room is small, narrow, and decorated in warm, soothing colors.

"First off, I want to ask how much has already been explained to you?"

"That my son is brain-dead," the mother says quietly. Lynch tries to coax any remaining questions out of the family, but they have none.

He decides to review what they have or have not heard before, explaining brain death, explaining that the patient did not respond to light or pain and could not breathe on his own. "Now, he did not walk into a gun. Someone shot him," Lynch says. "That makes this a homicide. And by law they're going to have to perform an autopsy. Now, to maintain my credibility, I have to tell you that you aren't obligated to help anyone. But when they perform the autopsy, they're going to remove all of his organs and discard them. I'm from the Regional Organ Bank..."

Lynch weaves his words through the quiet tension like an expert seamstress, neutralizing any possibility of hostility. In this room, he is an odd mix of pastor, doctor, attorney, and psychologist. As he speaks, Lynch pans the room to select various people to make his points with. Make sure their heads are nodding. Listen to yourself. If it doesn't make sense to you, it won't make sense to them. Keep the illusion of power out of your hands. That's showing respect. Acknowledge the pastor's influence. Cover all the bases. Don't leave them room to run. See the woman in the straw hat looking the tiniest bit doubtful? She's not the mother, but she is the leader. Keep her head nodding yes.

"You might as well," the pastor starts to say to the mother when Lynch finishes his speech. "If they're going to do it anyway, you might as well--"

"Wait a minute," Lynch interrupts, moving closer to the women, walking among their chairs. "Now, this is family," he says, spreading out his arms, smiling slightly. "And I'm going to treat you the way I would want to be treated if it were my family. I'll give you some more time alone to discuss amongst yourselves." The women smile and nod some more as he exits.

Lynch makes his way through the two sets of double doors and back down the hall to the ER, where Gaeta waits. "I think we've got a yes," he says. After a few minutes, a nurse tells Lynch that the family is ready. The mother has questions, but they are mostly related to finding money to pay for the funeral. Once her worries are calmed, the room falls silent.

"It seems like you're willing to go ahead with this." Heads nod all around and Lynch launches into a speech that he hopes will make them feel good about their decision. "This is not in vain. There's a family somewhere out there just like yours on the other side of the coin. Waiting. Just like you. You have the chance to help someone else. There are some thorns, but this is not all bad."

He tells the family that in three weeks they will receive a letter telling them about every patient who has received an organ due to their decision. "They are going to want to thank you, and sometimes even meet you. Because in spite of all the racisms and classisms and all the other -isms in society, they're still going to be grateful. Once I make the call, I will automatically put about 55 people into action." He prepares them for Gaeta, who will start the long night ahead by asking them about the young man's life. (Did he use drugs? Engage in any high-risk sexual activity? Ever have a tattoo? Body piercing?) Before Lynch excuses himself, he tells the mother to notify him about funeral services. He wants to send flowers.

Though lives will be saved, Lynch exits feeling as if he has thrown the family to the lions. He knows that they are about to enter a phase of reality that he can't help them through. "It's an uncomfortable time for me because you want to be thorough. You want to assist in every way." Dealing with death on a daily basis, he has learned long ago to divorce part of himself, the part of him responsible for his sanity, from the impact of its finality. But this family doesn't have his years of experience.

He walks back to the emergency room, a little quieter, a little slower. "I'm not walking through these doors again," he laughs with the security guard. Before leaving he makes sure to thank a doctor for his help, and he hands a new nurse his business card.

Art accompanying story in printed newspaper (not available in this archive): photos/Lloyd DeGrane.

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