Article In Brief
Completion of an apnea test led to a higher consent rate for organ donation after brain death, while more white families consented than Black families. Neurocritical experts discuss the reasons for these and other disparities.
The decision to donate an organ after brain death is fraught with uncertainty for many families, and the reasons that prompt consent may vary.
A 12-year study, published in the July issue of The Journal of Neurological Sciences, aimed to learn more about consent to organ donation—and several observations stood out: completion of an apnea test to determine brain death led to a higher consent rate (92 percent) for organ donation, and white patients (89 percent) were more likely to donate organs than African Americans (62 percent).
The sex of the patient, admission diagnosis, number of examinations, and completion of a confirmatory test made no significant difference in predicting consent, said the lead study author Panayiotis N. Varelas, MD, PhD, FAAN, FNCS, chairman of neurology at Albany Medical Center in New York.
Dr. Varelas, who was involved in the care of as many as one-third of the 271 cases included in the study, said he was surprised at how much race was a factor in organ donation.
He and his colleagues speculated that, among potential reasons for the disparity, African Americans are more likely to believe in the importance of being buried intact and less likely than white families to know the wishes of their loved ones or to have a living will or a discussion with their families.
A lack of trust between the African American and medical community may also explain the reason for low consent, the authors wrote.
“That's why it's important to have studies like these, because now we are aware that it's a problem, even in this domain,” Dr. Varelas said.
To conduct the analysis, the study authors reviewed the medical records of 271 brain-dead patients in a registry at the Henry Ford Hospital in Detroit, from January 2006 to December 2017—222 of whom were approached for donation. Five were excluded from the analysis because data or information were missing.
In addition to differences in consent among whites and patients who had a completed apnea test, the study authors reported that consent was significantly higher for younger patients, those who were registered donors, those with diabetes, and patients who had lower creatinine at the time of death.
The research team acknowledged that their study was limited by the fact that data were derived from a single urban center, representing the demographics of southeastern Michigan. And that religious affiliation, which has been found in other studies to play a significant role in donation, was not known in about half the patients.
Organ Procurement Organizations
Neurocritical care specialists who reviewed the study for Neurology Today said that health care providers do not approach families about organ donation directly; a local organ procurement organization (OPO) works with the families separately from the doctors.
Still, neurologists do determine brain death, which sets up the process for donation. And there are national and international inconsistencies in declaring brain death, said Sachin Agarwal, MD, MPH, assistant professor of neurology at Columbia University School of Medicine.
“That's why it's important to have studies like these, because now we are aware that it's a problem, even in this domain.”—DR. PANAYIOTIS N. VARELAS
“Even after the consent, if there are delays in procuring organs, the family could change their mind and take their consent back.”—DR. SACHIN AGARWAL
“Once the brain death diagnosis is made, we leave the room, and at that point, OPO staff approach the family for consent,” said Dr. Agarwal, who also runs an outcomes clinic for patients discharged from the neurocritical care unit at New York-Presbyterian Hospital.
He said, in his experience, gaining consent successfully has depended on the OPO staff. “Timing delays could deter the family and make them impatient, particularly if they have decided to terminally extubate,” he said. “Even after the consent, if there are delays in procuring organs, the family could change their mind and take their consent back.”
Consent also may depend on the families' perceptions of how well their loved ones were treated by doctors and staff in the hospital, said Galen Henderson, MD, associate professor of neurology at Harvard Medical School and director of neurocritical care and the neuroscience intensive care unit at Brigham and Women's Hospital in Boston.
“I notice, for example, that in the ICU if a white person dies or is very sick, and they have 15 people in the waiting area, the staff behave one way, but if it's a person of color or 15 Spanish-speaking people are in the room, they complain more, and there's a lot more talk about calling security, even when nothing has happened,” he said.
“There is a lot of bias in the system, and the study did not comment on that. It's not something that can be pulled out of a database,” he added.
“The process of determining brain death has very little impact on families consenting to organ donation,” Dr. Henderson said. Perception of how care was delivered is more important.
“It would be helpful to see a study in which researchers returned to the families of the loved ones after some time to find out why they made the choices they did, Dr. Henderson said. Other neurocritical care experts agree that more follow-up research is needed to dig deeper into the reasons why people, particularly African Americans, do not consent.
Although the study did not mirror her personal experiences, Neha Subhash Dangayach, MD, assistant professor of neurology and neurosurgery at Icahn School of Medicine at Mount Sinai in New York City, said she understood that the African-American community had an overall lack of trust in the medical system.
Better education about organ donation overall is needed, and the medical community should take a longitudinal proactive approach to establish trust and form a relationship with their patients rather than waiting until people are at their most vulnerable and doctors have little time to establish a connection.
“It's really up to us to make the family feel supported when making decisions,” said Dr. Subhash Dangayach. “We need to share all the information we have in a language that the family can understand. Sometimes we don't have the luxury of time, but we need to support them in the best way possible.”
Study author Dr. Varelas said he tries to convey how dire the situation is as soon as possible. “I tell families what we found, and I show them the films,” he said. “I tell them, ‘This is a big bleed or a huge stroke or a lethal trauma to the head,’ to prepare them. Sometimes people believe in miracles, but, even in 2020, medicine can only treat certain situations and diseases.”
“There is a lot of bias in the system, and the study did not comment on that. It's not something that can be pulled out of a database.”—DR. GALEN HENDERSON
As for an apnea test contributing to consent, David M. Greer, MD, FAAN, professor and chair of neurology at Boston University School of Medicine, said being able to witness the test itself may influence the family's decision.
Dr. Henderson agreed. “When the family sees their loved one on a ventilator, it can be hard to understand that the machine is doing all the work, but when they see the [apnea] exam being performed in front of them and they see that their loved one is not moving or reacting, the reality hits them,” he said.
Dr. Greer, who published a study on the determination of brain death in the August 3 edition of JAMA, said there are many ways to move forward from this study.
For one, he thought having physicians on site who are underrepresented in medicine could make a difference. For another, the medical community needs to rebuild trust with African American patients and their families.
Developing an understanding of brain death, how doctors make the determination, and including families as part of the process is crucial, he said. Patients may worry that doctors are rushing the decision to pronounce brain death because they want the organs, he added.
“Some people don't accept that brain death is death, because the person's heart is still beating and they are warm to the touch,” said Dr. Greer, who suggested that researchers do a race-blind survey to ask why relatives make the choice to donate or not.
“It's about being sympathetic to the family even if you disagree with the decision because they are going through something horrible,” he said.
Drs. Varelas, Dangayach, Henderson and Greer had no relevant disclosures.