Culturally Competent Transplant Care
This article was originally published in the Northwestern Medicine Magazine. It has been modified for Northwestern Medicine’s content hub, HealthBeat.Growing up in Colombia, Juan C. Caicedo, MD, wanted to be an engineer, like his parents. But as soon as he realized that he liked working with people more than machines, he turned to medicine. “Machines cannot smile and hug you,” he says.
Dr. Caicedo, director of the Northwestern Medicine Hispanic Transplant Program, eventually became a transplant surgeon because he wanted to save lives. While participating in an English-language immersion program, he took a trip to Chicago, stopped in at Northwestern Medicine Kovler Organ Transplantation Center and spoke with its leadership. That fateful meeting ultimately led to a fellowship and an offer to work at Northwestern Memorial Hospital.
“I decided to stay in Chicago, but I wondered if I was letting my people down in Colombia,” he says. “Then I saw the need here. Nobody had any initiatives focused on Hispanics.”
Reducing Transplant Disparities
Determined to change that, Dr. Caicedo founded the Northwestern Medicine Hispanic Transplant Program, which offers culturally competent and congruent care for Hispanic (both English- and Spanish-speaking) transplant patients and their families.
When Dr. Caicedo started the program in 2006, the need was clear. Research showed that Hispanic patients often spend more time than other ethnic groups on the kidney transplant waiting list and have a higher mortality rate while waiting for a kidney. They also have lower rates of living donor kidney transplantation, which is considered the best type of transplantation option for better recipient outcomes.
Statistics reflect the need. In 2015, more than 98,000 patients were on the kidney transplant waiting list in the United States, according to the Organ Procurement and Transplant Network. Of those, 37 percent were non-Hispanic white, 34 percent were African-American and 20 percent were Hispanic. “Minorities make up the majority on the waiting list,” Dr. Caicedo says.
Involving Family in the Patient Process
When he started the program, Caicedo was its sole champion. But soon he was joined by medical anthropologist Elisa Gordon, PhD, MPH, professor of Surgery in the Division of Organ Transplantation, whose research focuses on the ethics of organ transplantation and reducing health disparities. Together, they began studying disparities in living kidney donations from Hispanic patients and found that major barriers included lack of knowledge, language differences, cultural differences, misconceptions about organ donation and transplantation, and lack of community awareness.
A big part of the Hispanic Transplant Program is communication — not only providing information in Spanish, but also communicating with the patient’s entire support network. Hispanic patients receive in-person education straight from Dr. Caicedo.
“Many in the Hispanic community highly regard physicians, so when a physician delivers the education, it’s a big deal,” Dr. Gordon says. Dr. Caicedo also invites others involved in the decision-making process. “Getting grandma’s blessing is very important,” Dr. Caicedo says.
Educating Donors on Their Role
Educating families is especially important when patients need a living donor. Asking a friend or family member for an organ can be awkward. Not only does living donation require major surgery, donation can change the relationship between donor and recipient. If the organ is lost, for example, the donor or patient might feel guilty. That expectation, known as the “tyranny of the gift,” is often the reason patients don’t want to accept living donations. But this reluctance can be overcome through education and support.
Dr. Caicedo and Dr. Gordon soon found that potential donors needed to be educated on what the surgery meant for them. They often wonder whether they can exercise or have children after the procedure (they can), or whether they will need to take medication for a long time (they don’t). In addition to the in-person meetings, the pair created Informaté, a bilingual culturally targeted website related to transplantation and donation.
Dr. Caicedo also grew the clinical team, which now includes more than 20 members, including Spanish-speaking surgeons and clinicians, social workers, nurses, transplant coordinators, assistants and financial coordinators.
Expanding the Program
By every metric, the program has been a success. A 2015 study comparing the six-year period before and after the program began showed that Hispanic patient additions to the Northwestern Medicine transplant waitlist increased by 91 percent. The number of Hispanic kidney transplant recipients increased by 70 percent, and the number of living kidney donations performed on Hispanic patients increased by 74 percent. That meant the program was bringing more Hispanic patients the transplants they needed.
These numbers fare well against national statistics. For example, while around 30 percent of Hispanic patients nationwide receive a living donor kidney, at Northwestern Medicine hospitals that rate jumps to at least 65 percent. “We’re showing that it’s possible to change these disparities — you just have to change your approach,” Dr. Caicedo says.
In 2010, the program expanded to include liver transplants. Now, Dr. Caicedo and Dr. Gordon are helping others implement Hispanic kidney transplant programs into their transplant centers. Dr. Gordon is also thinking about developing culturally targeted initiatives for African-American living kidney donors.
The ultimate goal is to continue to broaden culturally targeted interventions like these at hospitals across the nation. “Our Hispanic Kidney Transplant Program has been a pioneer,” Dr. Caicedo says. “This country is successful because of its diversity, and we should honor that.”