Organ donation is an extremely complicated and highly regulated affair. Many factors influence whether donations are authorized and how donor organs are ultimately used, but Heather Traino, an associate professor of Social and Behavioral Sciences at Temple University, and Laura A. Siminoff, dean of Temple’s College of Public Health and Laura H. Carnell Professor of Public Health, have teased out one factor that appears to intersect with the rest: communication.
When the Organ Procurement and Transplant Network (OPTN) was established in 1984, it broke the country into 11 regions called donor service areas (DSAs), each of which has its own practices for requesting donations and carrying out national guidelines. Organ donations overall aren’t exactly low – in their study, recently published in the American Journal of Transplantation, the authors found that nationwide, family decision makers authorize organ donation at a rate of 89.1 percent; regionally they ranged from 60.4 percent to 98.1 percent – but even that doesn’t meet the demand. The nonprofit advocacy group Donate Life America reports that 119,000 people in the U.S. are currently awaiting transplants, and 8,000 deaths occur annually because an organ was not donated in time. What’s more, the rate of family authorization has remained largely static since 1988.
In these acute decision-making environments – where individuals must quickly make a serious choice in an emotionally charged environment – communication has a far-ranging impact. “You can’t change your mind a week later,” Siminoff says. “If the decision is not to authorize organ donation, the opportunity to save the lives of others is lost.”
The impact of such decisions is difficult to overstate: One individual, through the donation of their heart, liver, lungs, kidneys, pancreas, and intestines, can save or improve the lives of up to eight people. One tissue donor’s heart valves, bone, skin, tendon, and other connective tissue can help upwards of 50 people in need.
So Traino and Siminoff wanted to understand what makes a family decision maker say “yes” to organ donation and what accounts for the variation in authorization rates across regions – a tricky endeavor, given the inscrutable nature of the decision making process and of memory.
“The best way to do this would be to audio-record requests for donation as they occur in real time, like a fly on the wall,” Traino says. “A lot of our research examines, mostly indirectly, the content and tone of the conversations between decision makers and requesters to tease apart what is important to decision making.”
After interviewing 1,339 family decision makers from across eight of the 11 donor service areas, the researchers noted distinct correlations between the final donation decision and the quantity and quality of communication that occurs during the request.
Among study participants, family decision makers in the three regions with the lowest authorization rates also were the least satisfied with the amount of time they spent discussing donation, reported feeling more pressured to donate, and were least comfortable with the decision to donate. Conversely, decision makers from DSA region 8, an area with historically the highest rates of authorization, reported the highest levels of perceived quality of care and concern from healthcare providers, comfort with the person discussing donation, satisfaction with the request process, and comfort with their donation decisions.
“There is ample evidence that communication is critical to helping people who are making healthcare decisions,” Siminoff says. “It points to the need for people in all health professions to be trained as skilled communicators even as they are trained in clinical skills.”
Importantly, this study also contributes to our understanding of the characteristics of effective communication. Other studies, some of them conducted by Traino and Siminoff, suggest that strategies such as starting the conversation early, providing additional support and information, discussing the specific benefits of donation, and requesters’ confidence, sensitivity and compassion may influence a family member’s decision to donate.
“We would like to see how and if communication approaches should be tailored to different audiences, such as Asian Americans or other minority communities who may not be as familiar or comfortable with the idea of organ donation,” says Siminoff, whose program Communicating Effectively About Donation (CEaD) provides free web-based training for organ procurement staff who are tasked with approaching families for organ donation. “I would like to see everyone having the opportunity to consider this option in a way that allows them to make decisions that reflect their genuine preferences and values.”
The researchers hope that a deeper understanding of the subtle factors that go into organ donation will also influence the way organ donation is administered nationally. “This study informs the current national debate regarding the controversial proposal to redraw the DSA boundaries and redistribute the pool of transplantable organs,” Traino says.
Full paper available at http://onlinelibrary.wiley.com/doi/10.1111/ajt.14165/full.