THE BLOG
02/13/2013 12:07 pm ET Updated Apr 14, 2013

How Can Organ Donation Rates Be Improved?

This question originally appeared on Quora.
2013-02-12-daptekar.jpeg
Answer by Denise Aptekar, Kidney Transplant Recipient

How To Increase Organ Donation Rates

Pay It Forward

Israel is pioneering a new approach over the past three years that prioritizes organ allocation based upon willingness to be a donor. If two people on the organ transplant waiting list are medically equally well matched as potential recipients, the organ will go to the person who previously agreed to be an organ donor.

The results were dramatic with a 10X increase in donor registrations during the ten week period promoting the new law. [1] Self-preservation is a powerful motivator.

Chain of Living Donors

Let's say you have a loved one in need of a kidney transplant but no suitable match is found among their own relatives. You can become a donor for someone else on the waiting list while, in return, your loved one receives a well matched kidney. Both of the donors are called "non-directed," meaning that they do not choose who receives their kidneys. This dramatically expands the pool of eligible donors.

This system arose in South Korea in the early '90s by initially pairing two sets of donors and recipients. Its expanded since then with one sixty person chain profiled by the New York Times. [2]

Opt-Out

"Opt-out" is when every citizen is assumed to be an organ donor unless they otherwise indicate their refusal. This is in comparison to "opt-in," where citizens must sign an organ donation card to be considered donors.

It's well known that the majority of people will follow what is defaulted in any given situation.

Let's take countries with similar cultures and see the differences in the % of the population willing to be available as donors.

Germany (Opt-In) = 12% of its population assumed willing to be donors

Austria (Opt-Out) = 99% of its population assumed willing to be donors [3]

The countries in gold are Opt-In and those in blue are Opt-Out.

This seems like a clear winner in increasing donation rates, right? Well, here is where it gets interesting.

Opt-out has the potential to dramatically increase the availability of organs. I write "potential" because the system only works well when its adhered to by doctors. In reality, when the time comes to actually donate, doctors still typically defer to the wishes of the deceased's family. In some countries, this practice is even mandated by law, called "soft opt-out."

Therefore, a country can have a high rate of presumed consent but still not see high rates of actual donations.

Sweden is one such example. It has opt-out and 86% of the population presumably available. However, it has one of the lowest actual rate of organ donation in the EU, below that of opt-in countries such as Germany and Netherlands. [4]

The trend is positive however with countries with opt-out systems having a 25-30% higher actual donation rates than countries with opt-in systems. [5]

This graph shows actual rate of organ donation with Opt-Out (ie presumed consent) presented by the dark bars and those with Opt-In (ie informed consent) are white bars.

[6]

Conspicuous Conservationism

Human bodies are naturally created with recycling in mind.

If you donate as a living donor, your community can celebrate your amazing sacrifice. This recognition is not available to the dead organ donor. So we need to move up the recognition of this good deed to the point when people become organ donors on paper.

Toyota built the Prius hybrid to look noticeably different from any other car. Hybrid cars bestow social status on the drivers but only if its obvious their car is environmentally friendly. [7]

By the same token, since organ donors are making a positive impact on society, they should be conferred higher status than non-organ donors. Instead of a tiny dot on my driver's license, I want a new design easily viewed and identified from far away that I am an organ donor.

Every time I go to a club, buy alcohol or show identification I want to signal to those around me that I am an organ donor. Ideally we will get to the point that people will be embarrassed to take out their driver's license if they are not organ donors.

Example of New Backside for Organ Donor Driver's License

Let's dramatically increase the opportunity to become an organ donor by making it available everywhere.

Organ donation preference should be a standard section in government, employer, educational and professional forms. This includes estate planning, wills, life insurance, health insurance, social security card applications, medicare and medicaid, voter registration, passport registration, child custody directives, living wills and advance treatment directives, birth certificates, doctor office visits, tax returns, green cards, registering for the military, your student file at college, social service visits, etc ...

Organ donation cards should be available in cafes, voting booths, post offices, libraries, courts, parking lots, etc... The government should provide a QR code on the card for immediate registration. There should be standardized links on all government websites to state organ registries. [8]

QR Code in New York City's Times Square

Becoming an organ donor will be easy, it will be integrated into life experiences we all share, and repeated exposure will habituate us to the discomfort that comes with thinking about our own death.

God Knows We Need Your Organs Here on Earth

The views of the clergy hold tremendous weight for billions of people in matters of life and dead. Most of the world's religions accept organ donation. [9] Some leave it up to the individual while some proscribe conditions such as prior written consent (Islam), criteria for death (Judaism), or draining of the organ's blood prior to transplantation (Jehovah's Witness).

I'm not in a position to discuss or challenge these belief systems to be stronger advocates for organ donation. What I am asking is that religious organizations and leaders vocalize more to their congregations the teachings of their faith. We are regularly told by faith leaders to be better people along with the specifics of what that entails.

If organ donation is accepted, then let's make it part of the standard list of actions expected by the faithful along with honoring your parents, not stealing, and treating others as we wish to be treated.

11th Commandment

The Personal is Political & Powerful

Facebook added an Organ Donor milestone to its Timeline feature in May 2012, creating an explosive, however brief, surge in organ donor registrations (over 100K). Why did Facebook add this cause, among the many to choose from, to add to the Timeline? Because Mark Zuckerberg's wife Priscilla Chan is a physician and has seen first hand children waiting for organ transplants. [10]

Assemblyman Richard Brodsky of New York advocated for a switch from opt-in to opt-out to increase the availability of organs. Why did he pick this area to concentrate his precious political capital? Because his daughter was the recipient of two kidney transplants. [11]

California passed a law in 2010 that created a live donor registry for kidney transplants and requires drivers to actively choose whether they want to be organ donors when they renew their drivers' licenses. Why would Steve Jobs, workaholic and international superstar, play such a major role in advocating for this minor state legislation that he was credited with being *the* reason it became law? Because he had a liver transplant. [12]

The lesson here mirrors that of the movement to grant homosexuals full and equal citizenship. The more GLBT people we know, the more likely we are to be supportive of their rights. Similarly, those touched by organ donation have the most motivation to sign donor cards. Our success will grow to the extent that we come out as organ donors and recipients.

Can We Talk?

When British citizens are approached in British hospitals to donate their family member's organs, 57% agree. However, when British people living in Spain are approached in Spanish hospitals, 91% agree!

Spain has succeeded in designing an approach to grieving families that works, even cross culturally. It now has the highest rate of actual organ donation in the world. Some of its hospitals have a near 100% acceptance rate.

Transplant coordinators may spend hours listening to the relatives and asking them to consider organ donation in a private room away from the hospital wards. A standard practice is to ask families what they think their relative would have wanted to happen. [13]

Finally, I have a suggestion for a PSA, public service announcement, based on the well known anti-drug campaign

This is your heart when you take it with you to the grave.

This is your heart transferred to its new owner after you no longer need it.

A thumbs up from Erika, a 28 yr old from Mexico City [14]
Kyle races in the Kona Ironman [15]
Stefania gave birth to twins 16 months after her heart transplant [16]
Peter walks his daughter down the aisle six days after receiving a new heart. [17]
Goffrey is studying cardiovascular technology [18]
8 year old Shanah can now do one-handed cartwheels. [19]

Any questions?

[1] In Israel, a New Approach to Organ Donation

[2] Lives Forever Linked Through Kidney Transplant Chain

[3] Organ donation

[4]  Page on Nvl002.nivel.nl   

[5]  Organ Donation: To Opt In Or Opt Out   

[6]  The impact of presumed consent legislation on cadaveric organ donation: A cross-country study  

[7] Hey Baby, Is That a Prius You're Driving?

[8] State Organ and Tissue Donor Registries

[9] Religious Views on Donation   

[10] Why Priscilla Chan may become the country's most influential doctor    

[11]   NY lawmaker wants presumed organ donation consent  

[12] http://www.businessinsider.com/steve-jobs-does-it-after-almost-dying-california-passes-his-organ-donor-law-2010-10 

[13]  Spain leads world in organ donations 

[14]  Dropped heart patient leaves hospital after transplant 

[15] Ironman Kona: Cancer Survivor, Heart Transplant Recipient Kyle Garlett

[16]  Page on Barnabashealth.org  

[17]  Page on Barnabashealth.org 

[18] Patient Success Story - Goffrey, heart transplant recipient

[19]  Shanah Bridgett: Berlin Heart

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