I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on July 06, 2011, 05:22:26 PM
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Woman fights for rights of families of organ donors
By Alisha George
When Toni Sochrin's son was killed, four of his organs were harvested and given to those in need in locations across the U.S. Now she's fighting to extend the rights of donor families such as hers.
Her son, Ben Sochrin, was 20 years old when a car struck his motorcycle in July 2008.
"My goal was for the donor families to have rights. [We're] asking that whoever receives [the organs] would give us the right to know who they are," said Sochrin, of Westminster.
Rather than have a liaison contacting donor families for recipients, she would like to get a personal message from the recipient, to know they are healthy, she said.
"Right now, everything is up to them," Sochrin said.
Her family can pass along information through the Living Legacy Foundation of Maryland, but it's up to the recipient if they want to then contact the donor family. The recipient can even refuse to see any letter that is sent from the donor family, if they so choose, she said.
Representatives from the office of U.S. Rep. Roscoe Bartlett, R-District 6, have agreed to meet with Sochrin to discuss introducing legislation that would give more contact rights to organ donor families.
Sochrin said she has met with two recipients of her son's organs, but the other two recipients have not gotten in touch with her, despite her efforts.
"That's taking part of my child," she said. "This is life we've given to them."
Not having contact with the recipients is preventing closure, Sochrin said. Though she knows they may be feeling recipient guilt, she doesn't think the recipients are the only ones who should have the right to decide whether to contact the donor family.
Sochrin felt this was an important cause to pursue, not just for her family but for all organ donor families.
Faye Powers, legislative assistant at Rep. Barlett's Washington, D.C., office, said the meeting to discuss Sochrin's viewpoints will determine if the office wants to research the issue further.
"We haven't committed to anything yet," she said.
There are a lot of privacy issues at stake that may prevent other members of Congress from getting involved, Powers said.
"We understand what she's looking for, but we don't know if it's possible," she said.
Sochrin remains hopeful that the other two organ recipients will still get in touch with her family.
"Hopefully, one day, they will pass a law, so we have rights in this, too," she said.
http://www.carrollcountytimes.com/news/local/woman-fights-for-rights-of-families-of-organ-donors/article_4a93b5f6-a5ed-11e0-aad1-001cc4c03286.html
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Uhh, just my opinion, but - HELL, NO. You want a right to order me to give you a personal update on my health? You want the right to know who I am? Whether I want you to know or not? What if going public about my illness makes me lose my job? What if coping with survivors guilt is too much for me to deal with even before I meet the donor family?
And no, it isn't all up to the recipient, either - it works both ways. Those who have given a relative's organs do not have to contact the recipient if they don't want to either. It's not like the recipient is given an option of doing their own background check before receiving the organ. Is she prepared to make her family records part of the package, too?
How did we get from her "giving life" with the donation to the recipient "taking her child?" The current system is in place to protect the recipients from exactly the kind of donor family's that she seems to be - ones who are giving a gift with some serious emotional strings attached. Short jump to emotional blackmail from there, and financial blackmail is just a hop, skip and a jump past that.
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it goes both ways as JB said, sometimes you get responses, sometimes you don't.
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I cringe at the thought of mixing "altruism" with "rights".
This lady says that she just wants a personal message from the recipients "to know they are healthy." Well, what if they aren't? What if the recipient dies on the table during surgery? What if the organ is rejected? What if the recipient is healthy in one month but not in six? Does she want the donor families to know all of that? Does she really want donor families to bear an additional burden?
Anyone with a transplant knows that this procedure NEVER ends in "closure". We all know that transplantation is a treatment, not a cure. That message is drummed into us day after damn day. But this lady doesn't understand that. So, what would happen if, say, after 5 years, the recipient of one of her son's kidneys lost the allograft? Would she want an update about THAT?
This is a terrible, terrible idea. To mandate this would be an enormous mistake with unintended consequences. Keep the system as it is.
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:bump;
I want to bump up this topic because I am really interested in what others have to say. If you are/have been a transplant recipient of a cadaveric kidney and your transplant has failed, would you tell the donor's family? Do you think any donor's family would want to know this sort of thing? Or do they just want to hear the "good news' that the recipient is healthy and beside themselves with gratitude?
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This is outrageous!
There is no way that in America will someone (an individual) compel me to report to them my MEDICAL condition. What about HIPPA laws.
And if we refuse to comply what then, they jail us, or take back the organ.
By the way, She has no rights to those organs or her ADULT son.
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There is no way that in America will someone (an individual) compel me to report to them my MEDICAL condition. What about HIPPA laws.
I know. It's a bit creepy. But to be fair, I suspect that this woman wants some sort of tangible recognition of her bereavement.