Tuesday, November 18, 2014

Why some people don't register as deceased organ donors

In The Atlantic, Tiffanie Wen reports: Why Don't People Want to Donate Their Organs?

" In the United States alone, 21 people die everyday waiting for an organ transplant. Though about 45 percent of American adults are registered organ donors, it varies widely by state. More than 80 percent of adults in Alaska were registered donors in 2012, compared to only 12.7 percent in New York, for example. In New York alone, there are more than 10,000 people currently waiting for organ transplants. According to data compiled by the Organ Procurement and Transplantation Network, more than 500 people died in New York last year, waiting for an organ to become available.

"Given this shortage of organs, why don’t more people donate?

"It’s a touchy question, something non-donors aren’t necessarily keen to answer. But experts say there is a large disparity between the number of people who say that they support organ donation in theory and the number of people who actually register. In the U.K., for example, more than 90 percent of people say they support organ donation in opinion polls, but less than one-third are registered donors. What keeps well-intentioned people from ultimately donating is something that academics, doctors, and organ-donation activists are trying to figure out.

"In a recent literature review, researchers at the University of Geneva examined several social and psychological reasons why people choose not to donate, either by not registering as an organ donor during their lives, or electing not to donate the organs of their next of kin.

"The study cites mistrust in the medical field and lack of understanding about brain death as major barriers to donation. A 2002 study in Australia, for example, illustrates the controversy surrounding brain death. Some participants indicated that they wouldn’t donate the organs of their next of kin if his or her heart were still beating, even if they were proclaimed brain-dead.

"Studies have also shown that the less people trust medical professionals, the less likely they are to donate. The mistrust can come from personal experience—one study in New York showed, for example, that next of kin who perceived a lower quality of care during a loved one’s final days were less likely to consent to donation—or from misconceptions about how the medical community treats registered organ donors.

“There are a lot of people who subscribe to the belief that if a doctor knows you are a registered donor, they won’t do everything they can to save your life,” says Brian Quick, an associate professor of communication at the University of Illinois."

HT: Zeeshan Butt


J.P. said...

I'm a registered organ donor, but I think this story is too quick to gloss over the possibility that being a deceased organ donor will slightly decrease your chance of coming back from cardiac or brain death. There is a very small chance that herculean active interventions and good luck could bring someone back from either category of death, and its just very simple, very pedantic math to say that doctors won't be pursuing those continued herculean interventions if you're an organ donor. There have also been a handful of cases where organ-procurement organization reps have been unduly involved in the care of possible organ donors who are dying: http://www.washingtonpost.com/wp-dyn/content/article/2007/09/12/AR2007091202681_2.html?sid=ST2008032103015 .

It would be more persuasive to say, "Part of the gift of organ donation is that you are giving up an infinitesimal chance of living for the sake of a much more certain benefit to someone else." Many patients and families wouldn't want to pursue herculean interventions anyway, and can see the altruistic benefits of slightly altering their care to have a more successful donation.

People aren't wrong that these risks exist -- they're just misinformed about their likelihood. Acknowledging these risks forthrightly and educating patient's families about them is the right thing to do, regardless of its effect on donation rates.

ZHD said...

Some [redacted] years ago I was at the DMV with my dad filling out the forms to get my Learner's Permit. When we got to the part about whether I wanted to register as an organ donor for my license, I didn't have an immediate answer. My dad, who was an eye surgeon, told me: "they're probably not going to give you the benefit of the doubt."