The Heart of the Matter
By Lisa Beckelhimer
It was a week before Christmas and Becky Scheve was gathered with a medical team around the hospital bed of Asia Miller. The discussion wasn’t a joyous one about the holidays, but a grim one about whether Miller would live to see her first birthday on Dec. 23. Born with multiple heart defects, holes were developing in her heart muscle and the strain was taking its toll. If she didn’t get a new heart, she would die within days.
Witnessing this struggle was part of Scheve’s introduction to her new job. Less than a month earlier, the 1999 graduate began training as a transplant coordinator for LifeCenter, Greater Cincinnati’s organ procurement organization. Her career would now revolve around people like Miller—those on the verge of death, desperately needing an organ transplant.
Scheve’s job is to be their voice, to approach the families of brain-dead individuals and ask for their permission to remove the organs of their loved one so they can be transplanted in someone in need.
“The hardest part of my job is walking through the door and facing the family for the first time,” says Scheve. “I have to separate myself from realizing that while I’m doing my job, there’s a family on the other side of the door that’s going through the most terrible time of their life.”
The hardest part is never knowing how the families of potential donors are going to react. Some are gracious. Some are in shock or denial and can’t think straight. Others become angry that she would even ask and start screaming.
“I’ve never personally been yelled at, but there are times when it happens, especially in trauma cases,” says Scheve. “They don’t understand and they’re angry, and unfortunately, if we’re there at the wrong time, their anger comes toward us.”
By law, area hospitals must contact LifeCenter when a potential organ donor exists. Since organ donors must be legally brain dead, most have experienced some sort of life-ending stroke, brain tumor or trauma, such as a severe car accident. When LifeCenter receives a call, Scheve or one of the other four transplant coordinators heads to the hospital, where they will spend anywhere from a few minutes to more than an hour with a potential donor’s family. Their approach: compassionately try to educate them on the benefits of organ donation, about how it can turn a tragedy into a miracle by using their loved one’s death to save other lives.
The advances of technology and medicine have made it possible to save the lives of those with failing organs who, in previous generations, would have simply died long, slow, sometimes painful deaths. Now, someone who donates all organs and tissues suitable for transplantation can help up to 50 people. Even organs not suitable for transplantation can be used for medical research.
And there’s a huge need. Nationally, the waiting list of those needing an organ transplant is more than 76,000, with a new name being added to the list every 14 minutes. Tragically, an average of 16 people on the list die daily.
In Cincinnati, nearly 300 people are in line for a new heart, kidney, liver or pancreas. Some are too sick to leave the hospital, and must walk around its halls pulling a computer that sends wireless signals to the nurses station so their vital signs can be constantly monitored. Others are given pagers, knowing that when it sounds they must rush to the hospital and undergo a transplant.
Sometimes, though, such statistics and logic aren’t compelling enough, and families still say no. Last year, roughly 100 or so local donors were identified, but only 47 families said yes. This year, that number is down dramatically. Nationally, only about 35 percent of potential donors actually donate.
To donate organs, most people assume they just need to sign the back of their driver’s license, but that’s not the case. The driver’s license indicates your intent to donate, but it is not legally binding. The family has to give consent after your death, says Mark Sommerville, LifeCenter’s director of education and development.
“The coordinators have a tough job because the patient is still warm to the touch and the families can see the heart beating and the chest moving because of the ventilator,” Sommerville says. “Becky has to assess whether the family has accepted that the loved one is actually dead, or if they’re just in denial.”
“I want to give them information and explain the process to them,” says Scheve. “But I’m not there to coerce them.”
The most difficult scenario for Scheve is when a patient has signed his driver’s license, yet the family refuses to give consent.
“It’s so hard because you want to grant the patient’s last wish, but you can’t,” she says. “You feel like you’ve failed because you know there’s somebody out there who these organs could have saved. You just walk out of the room defeated.”
The excuses she hears are often all too familiar. Families tell Scheve they want their loved one to go to Heaven with all his or her parts, that they don’t want the loved one to be cut up, or that they’ve simply never discussed it with the deceased and feel uncomfortable making the decision on their own.
Fortunately, there are times when LifeCenter’s efforts are successful. Since 1999, LifeCenter’s overall consent rate has been more than 50 percent.
“I’ve even gotten a few phone calls from nurses telling me a family’s already brought it up and wants me to come in and talk to them about it,” says Scheve. “Some will say, ‘Take whatever you want, I just want someone to benefit from this.’ Other times I’ll leave the room for a few moments and the family will come back to me with consent.”
Once a family consents, a chain of events is set into motion. Scheve coordinates all lab tests on the donor, adjusts medications to keep the donor in good condition until the organs can be recovered, runs a recipient match list for each organ from the national computer system, and begins contacting the physicians of potential recipients.
The computer system contains the name, medical information and location of every person in the country waiting for an organ. Recipients are prioritized by severity of illness, length of time on the waiting list and region. The sickest person who’s been on the list the longest and in the geographic area closest to the organ gets the call. When all the recipients are found, Scheve goes to the operating room with the donor.
“The coordinator continues to document everything, right up to making sure the ambulance is at the airport if an organ is going out of town,” says Sommerville. “Her job’s not done until the organs are at the transplant centers and ready for transplant.”
All this happens in a tight time frame. Hearts must be transplanted within four hours, livers in 12 to 18.
Scheve recalls juggling three cases in one day at Cincinnati’s University Hospital.
“Emotionally, it’s trying because you’re focused on one case and you have to go on to another. It’s just nonstop,” she says. “I started on Saturday night and worked through the middle of Sunday night.”
Transplant coordinators report to the office on weekdays, but are on call for 24-hour periods six to eight times each month. Sommerville says LifeCenter looks for health care professionals with critical care experience. That made Scheve a perfect candidate. After earning a nursing degree from the University of Cincinnati, she worked in critical care at Cincinnati’s Children’s Hospital for five years.