Organ donation consent rates much lower among minorities
Executive Summary
Organ donation consent rates are significantly lower among Hispanics, blacks, and Asians compared to whites, according to recent studies.
• It unclear if lower consent rates are due to cultural beliefs or communication problems.
• Other research reported lower transplant rates in Hispanic and Asian patients.
• Qualitative research is needed to determine the reason for lower consent rates.
Certain groups less likely to consent, but reasons unclear
T he number of Hispanic Americans on the U.S. organ waiting list has more than doubled, but that population is still 60% less likely than whites to donate organs, according to a 2014 study.1
In a 2013 study, researchers used data provided by the Organ Procurement and Transplantation Network to analyze the 35,823 organ procurement organization-reported eligible deaths from January 1, 2008, to October 31, 2011. "We did the study, in part, to validate, confirm, or refute smaller studies which showed lower consent rates in blacks and Hispanics," says David S. Goldberg, MD, MSCE, the study’s lead author and an instructor at Perelman School of Medicine at the University of Pennsylvania in Philadelphia.
The researchers confirmed these previous findings, and also reported a significant lower consent rate among Asians. It was unclear, however, whether lower consent rates were due to cultural beliefs, or whether they were due to problems with communication, language barriers, or lack of information.
"Due to the nature of the data, we couldn’t necessarily pinpoint the exact reasons why certain racial or ethnic groups are less likely to consent," says Goldberg.
Qualitative research, including interviews with families who have consented and those who haven’t, is needed to determine this, according to Goldberg. "Bioethical research can help in this regard, to help to empirically evaluate the internal and external influences which may alter a family’s decision to consent to donation," he says.
Differences in access
A 2010 study evaluated the outcomes of patients placed on the waiting list for liver transplant after a change in allocation policy occurred in 2002.3 It was determined that the model for end-stage liver disease (MELD) score reliably predicted mortality on the liver transplant waiting list.
"This was thought to be a more objective allocation policy method, as two patients with the same MELD score had the same risk of dying, and, therefore, should have equal access to transplant regardless of other factors," explains Amit K. Mathur, MD, MS, the study’s lead author. Mathur is assistant professor of surgery and senior associate consultant for transplant surgery at Mayo Clinic in Phoenix, AZ.
The goal was to remove the subjectivity from the assessments used to assign waiting list priority. "Additionally, it prevented gaming of the system," says Mathur. The concern was that doctors could admit their patients in order to increase their wait list priority.
"The study findings were quite surprising, actually," says Mathur. In the pre-MELD era, there were notable disparities in access to transplant from the waiting list, with African-American patients transplanted at a much lower rate than Caucasian patients.
"We found that after adjusting for where patients live, there was no significant difference in liver transplant rates between African-Americans and white patients," says Mathur.
The researchers did find, however, that Hispanics had a significantly lower transplant rate than non-Hispanic white patients. Asian patients with the highest MELD scores had lower transplant rates compared to their white counterparts. "These findings are concerning," says Mathur.
Approaches on horizon
Having more organ donors overall would increase access to transplant in general, says Mathur. However, empirical bioethical work is needed to understand the underlying reasons for racial and ethnic differences in consent rates.
"I think technologies to increase utilization and optimize liver transplant outcomes from otherwise marginal organs, such as livers with excess fat content or those recovered after cardiac death, have significant promise to increase donor yield," he adds.
There are regulatory and payer issues that threaten innovation on other fronts, says Mathur, particularly in living donor liver transplantation.
"Whatever gets proposed for organ allocation, at the end of the day, we are trying to allocate a scarce resource," says Mathur. "Balancing individual justice to transplant the sickest patient first must be balanced with utility."
- Salim A, Ley EJ, Berry C, et al. Increasing organ donation in Hispanic Americans: The role of media and other community outreach efforts. JAMA Surg. 2014;149(1):71-76.
- Goldberg DS, Halpern SD, Reese PP. Deceased organ donation consent rates among racial and ethnic minorities and older potential donors. Crit Care Med. 2013;41(2):496-505.
- Mathur AK, Schaubel DE, Gong Q, et al. Racial and ethnic disparities in access to liver transplantation. Liver Transpl. 2010; 16(9):1033-1040.
- David S. Goldberg, MD, MSCE, Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia. E-mail: [email protected].
- Amit K. Mathur, MD, MS, Assistant Professor of Surgery/Senior Associate Consultant, Transplant Surgery, Department of Surgery, Mayo Clinic, Phoenix, AZ. E-mail: [email protected].
