Ask often to get more organ donors

Study: Allowing people to opt in rather than out also effective

By Tara Bannow / The Bulletin / @tarabannow

Common misconceptions about organ donation

• “If I’m an organ donor, doctors won’t work as hard to save my life.”

“That is so not true,” said Leslie Brock, executive director of Donate Life Northwest. Doctors do everything they can to save patients, and being an organ donor will not change that.

• “I’m too old or too sick to donate my organs.”

Doctors will make the determination of whether a person’s organs are healthy enough to donate after they die. Before that, they can not know for sure whether or not their organs can be transplanted, Brock said. In some cases, tissue and cornea can still be donated even if organs cannot, she said. There is no upper or lower age limit to donate; people can donate into their 80s or 90s, she said.

Absolute exclusions include people with HIV infection, active cancer or systemic infection.

• “If you’re rich and famous, you’re more likely to get an organ.”

The organ recipient waiting list is based on numbers, not names, and peoples’ rank is determined by their health status and level of need for a transplant, Brock said.

“Brad Pitt is not going to get one over me,” she said.

Michele Ruscigno knew the day would come when she’d need a new kidney.

For the past five years, her doctor has been monitoring her kidney function, worried that the 62-year-old’s Type 1 diabetes could ravage the organs beyond repair. About five months ago, after a string of tests turned up bleak results, she embarked on the search for a new kidney.

The hunt was anything but low key. The Madras women convinced her local paper, the Madras Pioneer, to run two articles about her plight. She put up fliers in stores and in banks. She sent letters to family and friends with extra copies they could share with their families and friends. She even worked the phone.

Two weeks ago, she got a call from her hospital in Portland: They had a kidney from a deceased donor. She underwent surgery that day, and has recovered smoothly. Before the operation, more than 10 living donors had offered up their kidneys, but none had panned out for various reasons.

Recovering from her Portland hospital bed last week, Ruscigno said she has her persistence to thank for her new kidney.

“That’s what they say: You have to let people know or nobody’s really going to know,” she said.

Persistence, it seems, is key when it comes to organ donations. That’s the main message behind a new paper from the National Bureau of Economic Research. The two economists who performed the research arrived at a simple but important finding: If people don’t agree to register as organ donors, just ask again. They’ll probably say yes.

The setting matters, too. Although most people are asked while they’re getting their driver’s license, they might be distracted there.

“That may not be the best place to think about whether you want to give organs,” said Alvin Roth, an economics professor at Stanford University and co-author of the paper. “You know, you’re standing in line at the Department of Motor Vehicles and you’re hoping to pass your driver’s test and you’ve got a lot on your mind.”

The researchers also found that how the question is posed matters, too. While the conventional wisdom has been that asking people to fill out “yes” or “no” on a form gets more people to choose “yes,” the researchers found that slightly more people opted to register as organ donors when their only option on the form was “yes” and opting out meant simply not answering the question.

Perhaps more importantly, though, the study found that next of kin are more likely to agree to donate a deceased person’s organs if that person simply did not opt in to the latter scenario versus if they answered “no” in the former.

The best way to get the most registered organ donors, the researchers conclude, is to ask often, ask in more than one setting, make it easy to register and don’t give people the option of saying “no.”

Keep the message out there

Leslie Brock, the executive director of Portland-based Donate Life Northwest, said those findings affirm the work her organization is doing.

“In order to get people registered as organ donors, you really do have to keep the message out there and keep talking to people about it,” she said. “The key to it is just education and getting out into the communities and working with people to let them know the importance of organ donation, kind of dispelling some of the myths and misconceptions about it.”

Donate Life Northwest, which focuses its efforts in Oregon and Washington, visits schools and community events like fairs and races and talks to people about the benefits of organ donation, sharing statistics such as one organ donor can save eight lives, Brock said.

The outreach appears to be working. Nationwide, 43 percent of eligible people are registered as organ donors, compared with 74 percent in Oregon, according to Donate Life figures. Oregon has the fifth highest organ donor registration rates in the country, Brock said.

“We just have really great programs out there informing the public and the importance of organ, eye and tissue donation,” she said.

More than 121,000 people in the U.S. are currently waiting for an organ donation, enough to fill a large football stadium twice, according to the U.S. Department of Health and Human Services. An average of 18 people die every day waiting, while another 79 people receive transplants.

In Oregon, as in most states, most people register to be organ donors at the DMV, although people can also sign up online at www.donatelifenw.org or by sending a form in the mail.

As for how they’re asked, Oregonians must check one of two boxes: yes or no. Brock said she thinks having only ‘yes’ as an option is a better method, mostly because it makes next of kin more likely to donate the organs if their loved one did not answer the question. It could also potentially save them from making a more difficult decision at an already tough time, she said.

“When someone is faced with that decision, it’s usually a very traumatic time for them,” she said, “and so anything to make the decision easier for them.”

Still, she said it’s important that people talk to their families about their decisions to become organ donors to eliminate any confusion if they’re faced with the question.

Ask when the mood’s right

The study — performed by Roth, who won the 2012 Nobel Memorial Prize in Economics, and his thesis advisee at the time, Judd Kessler, now an assistant professor of business economics and public policy at the University of Pennsylvania — took place in Massachusetts, and nearly half of the subjects were full-time college students. Roth said he does not believe the high proportion of college students skewed the results because when surveyed, their donor registration status matched the state average.

The study included 368 subjects, 212 of which — nearly 58 percent — were not registered as donors. After the study, in which they were simply asked whether they would like to donate their organs upon their deaths, 61 of the 212 people agreed to become donors, or about 29 percent. Only two of the 156 people who were already registered as donors took themselves off the list.

There a number of reasons why asking people more than once would get them to become donors, the researchers said. It could be that they didn’t pay attention the first time they were asked. Secondly, being asked the question multiple times could impress upon people the importance of the question. Feeling guilty about saying no multiple times could play a role, too.

Roth likens it to flu vaccines, a measure that ends up benefiting everyone because they’re collectively less likely to get the flu if more people are vaccinated. Like any public health campaign, it should be easy and people should be asked often.

“The fact that you can get a flu vaccine sometimes where you work or your local pharmacy — it’s pretty easy,” he said. “That’s part of the success of a vaccination campaign. I think it’s the same thing with donor registration. We should ask you sometime when you’re in the mood.”

The researchers also found that including a list of the organs people can donate also helped increase registrations.

How the question was formatted — whether people had only a “yes” option or both “yes” and “no,” — had only a small impact, with more people agreeing to donate if only given one choice: “yes.” California changed their question in 2011 from the one-choice format to “yes” or “no,” and has since seen a decline in registrations, Roth said. But the difference is modest, and Roth said he supports the single-choice format mostly because of how next of kin react.

In another section of the study, people were posed hypothetical questions about what next of kin should do when making a donation decision for a deceased person. If the deceased person had simply not answered the question of donation on an opt-in only form, 38.1 percent of the respondents said they should donate the organs. If the deceased person had answered “no” in a “yes” or “no” format, only 26.7 percent of respondents said the next-of-kin should donate the organs.

Regardless of how the question is asked, state organ donor registries only list people who have said ”yes” to organ donor registration; they don’t maintain lists of people who have said “no,” Kessler said. Thus, nothing legally prevents next-of-kin from donating the organs of a deceased person, even if they checked “no” on the form, he said.

Kessler, a co-author of the paper, said he hopes policymakers consider the results and potential changes they could make to boost donor registrations. That said, he conceded that this is only one paper, and he hopes it encourages other researchers to take up the subject.

“No one paper is going to determine what the optimal strategy is, but we hope that this adds to the pantheon of literature that can help states ask in the best possible way and help organizations that encourage organ donation get as many registrations and ideally, recover as many organs as they can,” he said.

— Reporter: 541-383-0304,

tbannow@bendbulletin.com

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