T

he shortage of organs for transplantation is a thorny problem. Nearly 118,000 people in the U.S. are on waiting lists for transplants of kidneys, hearts, livers, and other organs; an estimated 8,000 of them will not live to receive a transplant.

The desperate situation has spurred various searches for solutions. Scientists are working on ways to preserve donated organs longer and are developing algorithms that factor in a patient’s proximity to a transplant center along with their health characteristics. Others have suggested ways to increase the organ supply, maybe through financial compensation for donors, or via relaxed standards for donated organs.

But one of the most effective means might be a simple policy switch — from requiring donors to specifically sign up, to assuming everyone is a donor unless stated otherwise.

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It’s called opt-out organ donation or “presumed consent” and it means that basically every resident is an organ donor unless they remove themselves from that list. Some version of opt-out organ donation already exists in 25 European countries including Spain, Belgium, and, as of January, France. The U.K. is currently considering opt-out policies.

And those policies have been on the whole incredibly effective. A 2012 study found that organ donation rates are “typically exceeding 90 percent in opt-out countries and failing to reach even 15 percent in opt-in countries.”

But so far those policies have gotten little traction in the U.S., despite scattered efforts by states to introduce opt-out legislation. And so it remains an open question whether the policy change could solve America’s organ shortage — or whether, as some fear, it might actually make it worse.

States’ initiatives

While Americans overwhelmingly support organ donation, only about half of them are actually registered, according to the Department of Health and Human Services. And of those registered, only a few have usable organs after they die.

“In order to be an organ donor, you have to die in a way that keeps oxygenated blood flowing through the organ,” explained United Network for Organ Sharing spokesperson Anne Paschke. “But only 2 percent of people die that way.”

Bills introduced this year in Connecticut and Texas would have created opt-out organ donation policies in those states — but the former died in committee and the latter hasn’t moved much further. Colorado and Pennsylvania considered similar bills in 2011 and 2014, respectively.

Connecticut state Senator Ted Kennedy Jr., a health care attorney and cancer survivor, said he was inspired to draft the bill after Connecticut Senate President Martin Looney received a kidney transplant the previous month.

“My goal was to get the conversation started,” he said. “To get people to acknowledge that this is an issue. I was surprised to learn that 1,500 people are on the waiting list in Connecticut.”

But backlash in the state was strong. Letters to the editor ran in the local papers, and Republicans emailed their constituents to encourage them to oppose it, Kennedy said.

For instance, Chris Kelly, who lives in Kennedy’s district, wrote in a letter to the New Haven Register that the bill “insinuates that after our death, our bodies are by default the property of the state unless we have previously ‘opted out.’”

“I knew it would be controversial,” said Kennedy. “But nobody asked anyone who was on the transplant waiting list what they thought,” he added.

Texas Republican state Rep. Jason Villalba proposed a similar bill in that state in March. Currently, the bill sits in committee while the Texas Legislature is in recess.

Would it work?

Even if these policies gained traction in the U.S., it’s an open question whether they’d solve the organ shortage.

New England Donor Services President Alexandra Glazier said that an opt-out system would not necessarily increase donations, and that it could cause the number of organ donations to drop.

“Although it’s well-intentioned, we think it could backfire,” Glazier said. “People might be put off and would opt out, not because they’re against donation but because they’re against government control of their bodies. There’s the potential for large numbers of people to opt out.”

And those concerns have some basis. Brazil and Sweden are among countries that have faced a backlash against opt-out organ donation policies.

And cultural differences may mean that such policies can’t be directly replicated, even if successful elsewhere.

“Our attitudes here are very different,” said Paschke. “Individual rights are very important in this country more so than in other countries. Opt-out hasn’t been very popular because of the way that people here view government making decisions for them.”

Still, Kennedy believes the time is right for a discussion to challenge some of those beliefs.

“I’m not holding out much hope for this happening soon,” Kennedy said. “But I’m going to continue to raise the issue. I would love to see will happen next year.”

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  • I am currently waiting for my 2nd kidney transplant, i’ve had issues with my kidney’s for most of my life. Some of these comments to me seem like they are miss-informed. I am 32 and have been waiting 8 years for an organ, people dont understand that giving the gift of life is the greatest, yes its a hard decision that a family has to make. The doctors are not hovering over you and telling you that you HAVE to do it but there is a certain time frame as to how long they can wait to harvest there’s much much more I could say but I will save that for my blog that Im working on!

    • That’s just it in JB Anderson you are misinformed. I didn’t say you were uneducated? Maybe in this subject yes just because you’ve seen with your own two eyes that someone badgering another patient or family member doesn’t mean everyone is like that you may have seen one of the bad apples and I know there are some out there trust me I’ve been dealing with medical problems since I was 2 years old 30 years that’s a long time and I’ve seen things go wrong I’ve seeing things change for the good and the bad. Just because you have that little thing when your license saying you’re an organ donor means absolutely nothing at least in my state it doesn’t you have to have not only one but two family members that consent to donate organs. And because of some of this I missed my opportunity two weeks ago the family wanted to donate specifically to me and somehow it got misinterpreted and it went to another hospital. You have no idea what it’s like to wait every day not knowing if you’re going to be alive the next day or not anything can happen heart attack blood clot anything. And I’m sorry for your mother’s loss but maybe you should have stepped up and said jm we should find an organ donor. God bless you and I’m sorry for your loss but these are my opinions and the things that I’ve gone through trust me you’d never want your family member to go through a lot of the stuff I’ve gone through

    • Amelia, please don’t misunderstand what I am saying. I realize not everyone is in the same situations I saw in hospital, but it does happen. My hope is for us to have that conversation before it is in the worst case scenario. I work with clients all the time with this issue, and I encourage my client and their family to make these decisions well before. I don’t like the assumption that everyone would be a donor if only they knew what it meant to you. I would gladly have given my mother a kidney, but we were not a good match. She was also concerned that the day may come when I might need my kidneys, but because I had donated, I would be in trouble. For the record, I have sarcoidosis. There is no cure or treatment for it. I am thankful that I wake up, because I don’t know about tomorrow. My brother had a massive heart attack and died at 42. Others may not be in your exact circumstances, but they have to deal with the hand they’ve been dealt. I don’t wish your pain and fear on anyone, and I can understand from your point of view that everyone should be a donor. Please understand that some people disagree with your assumptions. You may want to rethink calling people misinformed on the grounds that they have a different conclusion or point of view. We all have our own experiences and viewpoints and we often make our decisions on that basis alone. I hope your donor is there for you. I truly wish you no harm. My thoughts and prayers are with you. I have already had the “talk” with my husband and daughter, and have made sure they are financially and emotionally ready if I pass suddenly. Sometimes this is the greatest gift we can give our loved ones. I’m not waiting for a miracle, just dealing with my reality. God bless…

  • Ms. Samuel, I appreciate your nice summary article.
    However, as a social & physical scientist, it would be helpful if a bit more precision was used. The article referenced for “Brazil and Sweden are among countries that have faced a backlash” says absolutely nothing about what “backlash” that was. The article gave no statistics as to how this effected donation or the passage of the laws, or if maybe this was a political or lobbying group that just got rowdy?
    Peter C, MD
    Blogging at https://medicalcareandinvesting.com/

  • NJB is mis-informed, and others seem mis-understanding.
    Opt-out programs use the same general programs to get a Decision well Ahead-of-Time that we use for Opt-in programs now. In PA driver’s license applicants are questioned every time they apply. They now are asked “Do you want to do this?” The prior, very straight forward suggested bill would change that to say the applicant “… consented to being an organ and tissue donor and this designation will appear on your driver’s license … If you do not want to be considered an organ and tissue donor, … [initial] the line below.
    ___ At this time, I do not wish to be included …” That was it!
    EVERYONE would have the “Right to Choose” not to donate.
    And this would Decrease any rare episodes that NJB alludes to of “hovering over your loved ones body and using guilt” – since now it may be unknown if a person really wants to be a donor, so the family has to be asked, but with “opt-out” it would be clears.
    Blogging at https://medicalcareandinvesting.com/

    • I am not misinformed, Thankyou very much. Nor am I uneducated. I spent 27 years in hospital, home care, and as a couselor in greif, death, and dying. The assumption that everyone would choose to be a donor if only they knew how much it meant to someone is arrogant and self serving. I have compassion for those on a waiting list (my mother waited for a kidney that she never got). This is similar to the bill the lawmakers tried to pass in NJ to aquire umbilical chords for stem cells. We have doctors now who ignore end of life directives to follow what THEY believe is right. By the way, I have seen this gathering of professionals speaking to the families with my own eyes, so please don’t patronize me. The family is emotional and trying to come to terms with their impending loss. One of the ways I try to be sensitive to both sides is to address this during counseling when all are alert and clear about what they want to happen. It is the assumption of compliance that I find offensive, not the donation itself.

  • No. No, no, no, no, no.

    I am a registered donor. Why should any useful organs be buried with me? That is my choice and I would be grateful to benefit others.

    That said, I firmly believe it is the right of a person to choose or NOT to choose to donate. Can you imagine the angst of family members if they are opposed to the surgery required to harvest organs? Some religions don’t allow autopsies. Would organ donation be different? Opt IN. Don’t make people opt out. To many, a dead body is not just a dead body.

  • I find this opt out perspective fundamentally flawed because it first assumes organ donation as the right and good thing to do, even if it goes against personal beliefs. Second, it assumes most of us would do it if we only knew about those waiting for a tranplant.
    Personally, I find the practice of hovering over your loved ones body and using guilt in a time of high emotional pain to be abusive and more like a vulture than a savior. I find those that choose of their own free will are selfless and beautiful in their spirit. This should not be assumed by organizations who have a misguided sense that they can play God for everyone else.

    • All very well you say that now – what if it was you that was in need of a transplant to save your life – how do you tell a 3 years old child that our community does not wish to save your life because we have no care factor. No one will hover over your body family still have the end say in what happens with donation at end of life. Come on in some states in the USA they dont event ask family they have the first person consent law where if you sign you donate with no family discussion at all – now that is not the way to go – also if you dont wish to be a donor just sign a form to say no – just image it was you again that needed a transplant?

    • Where to begin….
      Organ donation as the right and good thing to do? With all due respect, how can you even make that statement? Organ donation has literally saved thousand of lives including countless children. How is that not right or good?

      “Personally, I find the practice of hovering over your loved ones body and using guilt in a time of high emotional pain to be abusive and more like a vulture than a savior.”
      Clearly you don’t understand how the process works. They is no practice of using guilt in a time of high emotional pain to get a family to agree to donation. In fact many families find solace in the fact that some good may come of their loved ones death. Perhaps you should educate yourself on the subject before making statements such as these.

  • I have many concerns, some expressed above. I favor donation, but am unable to participate due to disease. Good for research only. Perhaps we should have an opt in option that means if you are willing to give, you are eligible to receive; if you are not willing to give, you shall not get. May be overly simple, but it sharpens the point.

    • I would have no problem with this option. To those who tell me I don’t understand because I’m not the one waiting…should I say you can’t understand pain because you have never had spina bifida like me? Or cancer? Or Sarcoidosis like me? Wasn’t losing my mother close enough to give me the right to express an opinion that does not agree with yours?

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