Some patients with potentially fatal diseases such as end-stage renal disease, heart failure or leukemia are lucky enough to get a second chance at life through a kidney, heart or bone marrow transplant. Most often their care during this critical time is coordinated by a transplant nurse.
“I really enjoy helping these patients get that second chance,” says Jacqueline Vaughan, BSN, RN, CCTC, a transplant coordinator at the Transplant Center at Howard University Hospital in Washington, D.C. “It’s really a joy when you see their quality of life improve and they are able to go back to work and be a productive member of society.”
As a transplant and organ donation nurse, Vaughan organizes and administers the care of potential organ recipients throughout the transplantation process. Her many responsibilities include providing education and support to transplant patients and their families as well as to living-donor patients offering their organs for transplantation.
Generally, transplant nursing is divided into two areas of practice: clinical and procurement. The clinical side involves working with patients who are in need of an organ. Nurses on the procurement side are involved in retrieving organs from donor patients. There is, however, some overlap. Like Vaughan, many nurses who work with potential organ recipients also work with living donors.
Making All the Arrangements
On a typical day, Vaughan coordinates a patient’s workup for a kidney transplant, which includes scheduling physician consultations and lab tests, communicating with the patient’s numerous doctors and gathering all of the information for the primary physician to review. Once the patient is considered a good candidate for a transplant, he or she is placed on the center’s waiting list, which currently has approximately 65 patients. Overall, Vaughan works with approximately 90 patients, administering their care until they are transplanted, at which time a post-transplant coordinator takes over.
The average waiting time for a kidney is three to five years at Howard University’s transplant center. Patients on the donor list must have their medical records updated annually. Living donors also require workups, albeit less extensive ones, to determine if they are a genetically compatible match with the recipient.
Cheryl Christian RN, OCN, a nurse coordinator at the Winship Cancer Institute’s Bone Marrow & Stem Cell Transplant Center at Emory University Hospital in Atlanta, works with approximately 30 patients who have leukemia, lymphoma and other blood cancers that can be treated by a bone marrow or cord blood transplant.
“Most of my time is spent coordinating the care and appointments for transplant patients and searching for donors,” says Christian, who has worked at the transplant center for four of her 13 years as a nurse. Patients typically wait six to eight months for a donor, or even as long as a year, she adds. Christian seeks donors through the National Marrow Donor Program, which has a registry with access to 6 million potential bone marrow donors, 60,000 cord blood units donated by parents after their baby’s birth, plus 4 million additional donors and cord blood units.
At the Mary Lea Johnson Richards Organ Transplantation Center at New York University Medical Center in New York City, the nurses work with the patients both before and after a transplant.
“We [never really] discharge anybody,” says Haeseon Park, MSN, RN, CCTC, a transplant coordinator who has been working at the center since 2000. “Once we have a patient, we have him or her for life.” As a result, the nurses form strong, long-term relationships with their patients. “If they received a transplant in 1990, you follow up with them for a long time, so you really get to know them and their families,” Park explains.
In addition to the pre-transplant workup, Park typically sees the patient weekly for the first month following the transplant, then every two weeks, once a month, every two months, etc. Two years out, she will see the patient every six months and then once a year. This schedule assumes, of course, that the transplant went smoothly and the patient does not reject the transplanted organ.
For Park’s co-worker, Min Zhou, NP, RN, who has been a transplant coordinator at the center for three years, every day of the week is different. On Mondays, Zhou sees post-transplant patients. On Tuesdays, she works with pre-transplant patients. On Wednesdays, she consults with walk-in patients. On Thursdays, she works with living donors. On Fridays, she meets with the Transplant Committee, which determines if patients meet all the criteria to be placed on the waiting list for either a liver, kidney or pancreas, depending on their medical needs.
The transplant center’s eight coordinators also have on-call responsibilities once a week. When they get a call notifying them that an organ is available, they notify all of the team members, arrange for the organ to be picked up, call the hospital’s staff to prepare the patient for surgery and schedule the operating room. It takes between 10 and 20 telephone calls to make all the arrangements, says Park, who oversees the care of approximately 300 patients.
“When you get a call like that, you are up all night; maybe you sleep one hour,” she says. “It always happens at night, usually after 10 o’clock. But when you see the patient doing well, that makes it all worthwhile.”
As manager of the Level One Trauma Program at LifeGift Organ Donation Center in Houston, which works with approximately 20 hospitals in the area, Tina LeVert, RN, begins her day with a morning conference call. She gets a status update of potential donations by checking in with staff members out in the field who are obtaining consent from donors’ families and recovering organs.
LifeGift also has a partnership with two of the hospitals, Memorial Hermann and Ben Taub General Hospital, in which LeVert teaches their staff members how to obtain effective consent. At both hospitals, organ donation is considered an important link in the health care chain. “We’re in on the first conversation of poor prognosis with the family,” says LeVert. “So by the time they have to make end-of-life decisions, they’re already familiar with us as a health care provider.”
When she first started working as an in-house donation coordinator in 1996, however, such partnerships were unheard of. LeVert recalls having to deal with many “vulture” comments from families of dying patients.
Today, to maintain a close relationship and foster a seamless consent process, LeVert works with the administration and sits on the Trauma Committee at both hospitals. She also advises hospital staff on how to recognize potential donors and she educates patients about organ donation.
Indeed, for many transplant nurses, patient education is a tremendously important part of the job. Jeany Elie, BSN, RN, OCN, lead transplant coordinator at Emory’s Bone Marrow & Stem Cell Transplant Center, spends a great deal of her time educating patients in person and over the phone. She provides them with books and instructional materials, often reviewing the information with them several times. “Transplantation is an overwhelming process and patient education is ongoing,” she says.
Patient education means not only informing organ recipients about the transplant process but also about staying healthy afterwards. “A transplant is not a cure, it’s a treatment,” Vaughan emphasizes. “The same thing that can cause your kidney to fail the first time can cause it to fail again.” Consequently, she teaches patients about preventing diabetes and hypertension, and about the importance of staying healthy. She also runs a patient support group that incorporates an exercise class.
Minority Donors Needed
One area in which minority nurses can play a major leadership role in the specialty of transplant nursing is educating communities of color about the urgent need for more minority organ donors. Currently, there are more than 98,000 people awaiting a life-saving transplant and nearly half of them are racial and ethnic minorities. Yet the rate of organ donation in minority communities does not keep pace with the number of individuals needing transplants, according to the federal Office of Minority Health.
Because patients in need of a transplant are more likely to find a genetically compatible match within their own racial/ethnic group–especially in the case of kidney and bone marrow transplants–increasing the number of minority donations is critical, says the American Society of Multicultural Health and Transplant Professionals. Although minorities do donate in proportion to their share of the population, their need for transplants is much greater, because so many serious diseases affect them disproportionately.
For example, African Americans, Asians, Pacific Islanders and Hispanics are three times more likely than Caucasians to suffer from end-stage renal disease, according to the Health Resources and Services Administration. African Americans comprise approximately 13% of the U.S. population and 12% of donors–yet they make up 23% of patients on the waiting list to receive a kidney. Minority patients tend to wait longer for matched kidneys and therefore may be sicker at the time of transplant, or even die waiting for a donor. (On a national average, 19 people die each day waiting for organ transplants.)
Although Christian was initially unaware of the disparity in minority donation rates, she learned quickly once she entered the transplant field. “When I have African American patients, many times they [are unable to] go to transplant [because of the lack of a matching donor],” she says. “I have a few patients now who are Indian and Hispanic, and there’s nothing we can do for them, because we have no donors.”
These are common themes that transplant nurses address when speaking to communities and potential donors about the need to increase organ donations from minority populations. “After our discussions, I’m not going to say that potential donors run right out and sign a donor card, but it opens the door for further dialogue,” says Shawanda Clay, MSN, APRN, BC, a heart transplant coordinator at the Veterans Administration Hospital in Nashville.
Cultural Barriers to Organ Donation
Another reason for the severe shortage of minority donors is that many Americans of color are uncomfortable with the idea of organ donation and are reluctant to participate in it, even if they know it can save lives. The National Minority Organ and Tissue Transplant Education Program (MOTTEP), based at Howard University Hospital, has identified five reasons why African Americans are not donating organs:
• Lack of community awareness about kidney disease and transplantation
• Religious beliefs and superstitions
• Distrust of the medical community
• Fear that if they sign an organ donor card, medical personnel would not work as hard to save them
• Fear of racism in the health care system–e.g., that their organs would be given only to Caucasian recipients.
Similarly, living donation is a very tough topic to sell in the Asian community, especially among the older generation, says Zhou, who is of Chinese descent and works with a large Asian patient population. The younger generation is more willing to donate than their parents, she notes, but even then the parents may refuse to receive an organ from their child. “I respect what they believe and don’t push it,” she says.
Additionally, many older Chinese patients believe in the importance of body integrity at the time of death. “When they die, they don’t want to be missing a heart or liver,” Zhou explains. “If they feel it may affect them in the next life, it’s hard to persuade them otherwise.”
This fear is also common in the African American and Hispanic communities, says Vaughan. “People have the notion that they came into the world with these organs and they must go out with these organs. They don’t want to go to heaven in pieces. Being a spiritual person myself, I tell them, ‘Your spirit is going to heaven. Your body is a shell and it’s okay to share it with others.’”
When LeVert hears such comments, she delves into them to find out what the person really means. When people talk about God wanting them to “go whole” to heaven, she responds that God performed the first transplant when He took Adam’s rib to create Eve. When they talk about wanting to be “buried intact,” this suggests that they have a fear of mutilation. In this instance, she explains that organ donation will not disfigure their body, making an open-casket funeral still possible.
In the Asian community, many immigrant families send their loved one’s body back to their country of origin, LeVert continues. “It’s considered a taboo if the body is incomplete, which ties into the notion of reincarnation.” If the family believes in reincarnation, she will ask what organs their loved one would need to maintain in the next life. “If they say the liver, because it detoxifies the body, I let them know they can donate other organs instead.
“You have to address the families’ concerns,” she stresses. “There’s always a way to reach [people] if you take the time to do that. I’ve been very successful in exploring those issues and getting the families to move beyond them.”
Many Americans of color, as well as Caucasians, have a fear of someone doing harm to them if they are an organ donor, says Clay, who is currently working with approximately 70 patients who are waiting for a heart transplant. “They are afraid that someone will harm them to receive the organs or that they will not receive the same quality of health care.”
Then there is the fear of needles. “Many African Americans are afraid of needles and that deters them from being donors. Plus, a lot of them believe that they will get cancer from donating,” says Christian. “We’ve had [transplant] patients with siblings who were perfect matches but they didn’t want to donate because they were afraid of needles.” In some cases, she is able to provide these reluctant donors with a different perspective by pointing out that a needle was used when they got their ears pierced or got their tattoos.
Culturally Sensitive Transplant Nursing
Helping to break down these types of barriers is just one aspect of bringing cultural sensitivity to the specialty of transplant nursing. It’s also about understanding the cultural traditions and practices unique to a particular minority population.
“Oftentimes, African American families will have [what’s known as] a ‘falling out’ [when their loved one dies in the hospital]. They may be wailing, dropping to the floor or leaning over the patient,” says LeVert. “That’s a cultural thing. That’s how they express themselves.” Many times, this behavior is misconstrued by hospital staff as the family being angry, which is not the case.
“As health care providers, we have to recognize that each culture is specific and unique,” she continues. “We should allow [these families] the time to [express themselves this way], because it is part of the grieving process. Once they have gotten through that, you can move on to the conversation about the opportunity to save somebody else’s life [by donating their loved one’s organs].”
Zhou instinctively knows that some of her Chinese patients, who are primarily an immigrant population, are taking traditional herbal remedies to combat their illness. The problem is that for patients who have end-stage liver disease, some of these herbs can do more harm than good. She always makes sure to ask patients about their alternative therapy practices and, when necessary, tries to convince them to stop taking the herbs.
Many times, the referring physician will tell a patient to go to the transplant center without saying that he/she suspects the patient has liver cancer. This is a difficult diagnosis for Chinese patients to accept, Zhou has found. These patients fall into two categories, she says: those who give up because they are afraid to have the transplant operation and those who go back to China for the operation, then return to the U.S. for post-transplant care.
“When I find out what part of China they are from, it helps me determine what level of education they have and it gives me a better idea of how I can lead them through the workup process and get them on the waiting list,” Zhou says. Being able to speak Chinese is key, she adds, because interpreters are not always familiar with the medical terminology and therefore do not always relay information accurately.
Reaching Out to Save Lives
Two years ago, Christian began sponsoring community outreach drives to recruit minority organ donors with her husband, who is a pastor. Last year they conducted three such drives at churches in the Atlanta area. “I wanted to do something to increase the awareness,” she says.
Similarly, Zhou began lecturing about organ donation in the Chinese community on behalf of an organ donor network in 2007. The role of public speaker was something she never expected to take on, she says, because she thinks of herself as a “very clinical person.” But once she took the plunge, she realized that she enjoys it.
“If I’m able to help expedite the process to get patients in the door so they can get a transplant to save their life, it’s very rewarding,” she says. She also recently began working on a research project focusing on the management of hepatitis B in post-liver transplant patients. Because she had already established long-term relationships with many of these patients, they willingly consented to participate in the project.
Although these minority transplant nurses come from varied cultural and ethnic backgrounds and treat an equally diverse patient population, they all find it a highly rewarding career. They appear to experience as much joy from their patients’ “new zest for life,” as Clay puts it, as the patients themselves.
“I feel like I’m a very integral part of the patient’s life at this very critical time,” Elie says. “And it’s most gratifying.”
International Transplant Nurses Society
National Minority Organ and Tissue Transplant Education Program
American Society of Transplantation
NATCO, The Organization for Transplant Professionals
Department of Health and Human Services Organ Donation Initiative
United Network for Organ Sharing