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Author Topic: "altruistic" applied only to non-directed living donors  (Read 5310 times)

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Offline WilliamLFreeman

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"altruistic" applied only to non-directed living donors
« on: June 10, 2012, 10:31:19 PM »
Y’all,
I would appreciate your reaction to my draft comment to UNOS, below.  One UNOS Proposal out for Public Comment applied the term “altruistic” to only non-directed donors.  I am a non-directed donor, and I strongly dislike that.  I am thinking of commenting on that use of the term to UNOS, with the draft below.  I would appreciate everyone’s comments, including (especially) non-directed donors.  Am I off-base, or on-base?  (The deadline for comments is June 15.)
Bill

   Many authors of articles and commentators use the word "altruistic" to mean only non-directed donors.  I am a non-directed donor (NDD).  But, NO THANK YOU.  I, and I believe many NDDs, strongly object to applying that term only to NDDs.  Like, directed donors are not altruistic?  HUH??
   Rather, "directed donors" donate to an identified individual; "non-directed donors to a chain" direct their donation to an anonymous person in a chain; and "non-directed donors to the wait list" [as I was] direct their donation to an anonymous person in the community wait list.  ("Community donors" is the term used by my transplant program, at Swedish Hospital in Seattle.)  And every donor in a chain other than the initiator are "directed donors to an anonymous person in a chain," much like NDDs donating to a chain.
   Most donors dislike attempts to differentiate among us using alleged "degrees of altruism."  Period.  Most donors simply did what we felt we had to do to help another person.  Period.  Please stop applying "altruistic" to only non-directed donors.
Bill - living kidney donor (non-directed, Seattle, Nov 24, 2008), & an [aging] physician  :-)

Offline MissFrizz

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Re: "altruistic" applied only to non-directed living donors
« Reply #1 on: June 11, 2012, 06:43:49 AM »
Well stated, Bill.  I realize that someone somewhere along the line was looking for a word to blanket the group of generous non directed givers out there.  But that doesn't make the directed donors less altruistic.

Stephanie

"Courage is being scared to death and saddling up anyway." - John Wayne

Offline sherri

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Re: "altruistic" applied only to non-directed living donors
« Reply #2 on: June 11, 2012, 07:08:43 AM »
Bil,

Thanks for taking the time to address this issue. Coming from a non directed donor, I hope your proposal is given some consideration. It took some years to educate the public and medical community about the use of the term cadaver donation as opposed to the more acceptable term, deceased donation. Through sensitivity training and education we can bring about small changes.

As a family donor, I too dislike the term "altruistic". Altruistic connotes that the decision to donate was somehow more pure or on a higher level. The medical community views those who donate anonymously as out of the norm and sometimes even offers more protection to these donors by providing a living donor advocate or having a mandatory grace waiting period. Does that make directed or family donation an obligation  or expectation? More importantly, how are they presenting living donation to potential donors whether they are related or not related to the recipient?

Keep us posted on the outcome.

Sherri

Sherri
Living Kidney Donor 11/12/07

Offline CK

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Re: "altruistic" applied only to non-directed living donors
« Reply #3 on: June 11, 2012, 07:16:08 AM »
For what it's worth, as a "directed donor", I feel less altruistic than the "non-directed donors". I don't mean that in a competitive way or a put-down to myself, just that my donation had a direct benefit to ME, in that I get to keep my recipient around and in my life. I do not think I would ever have become a non-directed donor, it wouldn't have crossed my mind.

That being said, however, I hate when people tell me how wonderful I am and how they don't think they would ever do it, so I get where you are coming from.  

Offline elephant

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Re: "altruistic" applied only to non-directed living donors
« Reply #4 on: June 11, 2012, 11:55:39 AM »
Dear Bill,

You make perfect sense to me. 

Dear CK,

I've had that thought.  But then, it's a great blessing you were able to donate to your recipent exactly when you did.  We've each answered the call to help when it came our way. 

Love, elephant. 

Offline alyfaye

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Re: "altruistic" applied only to non-directed living donors
« Reply #5 on: June 11, 2012, 02:43:59 PM »
I think this is a good issue to address. I am a directed donor, however I didn't know my recipient prior to donating. She was someone who I had heard about through the grapevine. I am part of a grey area. It doesn't make sense to call only non-directed donors altruistic. If we are going to deny one type of donor the title of "altruistic", then that calls into question all types of living donation as even the non-directed donor gets some benefit or satisfaction from donating. My life has certainly been enriched by donating to a stranger.

Offline audrey12

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Re: "altruistic" applied only to non-directed living donors
« Reply #6 on: June 11, 2012, 07:02:39 PM »
When I went to my PCP to get the referrals to the specialists for my testing, she said it was very "altruistic" of me to donate.  I had to look it up.   :)
audrey

Offline Fr Pat

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Re: "altruistic" applied only to non-directed living donors
« Reply #7 on: June 20, 2012, 08:55:34 AM »
Dear Bill,
     Hi. I tried to post some thoughts on this, but they got lost somewhere along the way so I'll try again.
     I quite agree that using the term "altruistic" only for some organ donations is not a good idea. Using the terms "directed" and "non-directed" is an improvement, however there is quite a variety of situations within the "directed" category:
--- donation directed to a family member.
--- donation directed to a friend.
--- donation directed to someone who is not a friend, but whom the donor heard about (co-worker, neighbor, church/synagogue member, alumni, client, person featured in a news article, etc.)
--- donation directed to a stranger, but a particular stranger whom the donor picked from among those posting a search for a donor.

     So it is a challenge to find accurate and non-prejudicial terminology. For a while the term "Good Samaritan Donor" was pretty good at summing up "donation to a person with whom the donor had no previous bond of family or affection" but it seems to have been dropped as having too close a connection to a particular religion.

     Actually it is sort of a nice problem to have: that there are so many varieties of living organ donation now that it is hard to describe them all! But calling some "altruistic" and some "non-altruistic" certainly does not do the job at all.

    Fr. Pat

Offline Donna Luebke

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Re: "altruistic" applied only to non-directed living donors
« Reply #8 on: June 29, 2012, 03:52:12 PM »
Bill

Thank you for addressing this issue.  Altruistic means selfless giving without expectation in return.  Another meaning is that there is no moral obligation.  Surgeons have historically thought that family is morally obligated to give up an organ when a family member develops ESRD.  In some countries, this is the main way someone gets access to transplant but this is because they do not have an organized deceased donor system.  It is often the women who donate because they less valued and healthy men have to work.  No one is morally obligated to give up a body part whether dead or alive.

A non-directed, anonymous donor is no more altruistic than I was when I donated to my sister.  The transplant community cannot change the definition of a term or spin it to make themselves more comfortable. 

Let us know how goes.  I brought this up at an ACOT meeting in the past (Dr. Conti from NY chaired the ACOT Living Donor Subcommittee).  It made my spine crawl like fingernails on the chalkboard every time someone used the term 'altruistic'.  There are articles which state that only this person should be followed after donation as if they are more important than any donor known to the recipient.  Some programs will have to change the titles of their 'altruistic' donor programs which encourage the public to come in and donate a kidney. 
Donna
Kidney donor, 1994    Independent donor advocate
MSN,  Adult Nurse Practitioner
2003-2006:  OPTN/UNOS Board of Directors, Ad Hoc Living Donor Committee, Ad Hoc Public Solicitation of Organs Committee, OPTN Working Group 2 on Living Donation
2006-2012:  Lifebanc Board of Directors

Offline PastorJeff

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Re: "altruistic" applied only to non-directed living donors
« Reply #9 on: June 29, 2012, 04:23:17 PM »
I am new to this but I don't understand the angst here. 

My surgeon made the comment that all donations are altruistic. 

Maybe it comes down to "Beauty is in the eye of the beholder."

Let people decide for themselves how they want to view it.  They will anyway in spite of our verbage. 

Offline WilliamLFreeman

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Re: "altruistic" applied only to non-directed living donors
« Reply #10 on: June 29, 2012, 05:21:47 PM »
Giants,

My angst is that, as a non-directed donor, *I do not consider myself more altruistic than someone who is a directed donor -- and I am quite uncomfortable when someone puts me on a pedestal, or ranks me. above other living donors.

All donors have our own fears of surgery and possible future psycho-socio-econo-medical adverse effects to surmount, our own strong reasons to donate, etc.  I have difficulty and unease when someone ranks us donors on "degrees" of altruism, given that the person does not know all my circumstances and lived values, or all the circumstances and lived values of [probably] any other donor -- much less those of all donors.  Put it another way, I consider us donors to be family -- and I have difficulty and unease when someone ranks people in my/our family, and puts me above most of my sisters and brothers.

I recognize that my friends who do that about me are well meaning.  I just gently tell them that all donors are altruistic, so please call me, simply, a "non-directed donor."

BTW, the people I admire most are family members of some deceased donors.  I cannot imagine the horror and excruciating grief experienced by the parents of the 8 or 9 year old girl in Tucson who was shot & killed in the shooting of Congresswoman Gabby and others close by her -- yet they quickly decided to donate her organs.  I hope that I would have done the same.

Bill
Bill - living kidney donor (non-directed, Seattle, Nov 24, 2008), & an [aging] physician  :-)

Offline sherri

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Re: "altruistic" applied only to non-directed living donors
« Reply #11 on: June 29, 2012, 05:40:27 PM »
I agree with you, Bill. I really do admire the families who decide to donate a loved ones organs after death. This has to be a heart wrenching decision to make, regardless of whether the deceased made their wished known or not. I admire recipients who are willing to accept a deceased donation even though they may have a living donor undergoing testing or one who has been approved.

Sherri
Sherri
Living Kidney Donor 11/12/07

Offline Barbara S

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Re: "altruistic" applied only to non-directed living donors
« Reply #12 on: July 02, 2012, 09:45:57 PM »
I too agree that people who make the decision to donate their loved ones organs at what is the worst moment in their lives is an incredible gift.  At an event for the Sharing Network I met a woman who brought her 4 year old daughter to the hospital for ear tubes, and less than 24 hours later was donating her organs - she was a remarkable woman, and then to go and tell people her story - I cried for her, but she took comfort at the children's lives she helped save.  Incredible.
Proud Kidney Donor to Brother
December 9, 2003
at Robert Wood Johnson University Hospital

Offline Scott337

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Re: "altruistic" applied only to non-directed living donors
« Reply #13 on: July 04, 2012, 09:22:29 PM »
Bill,

I know I'm late in chiming in, but I just got back on here and read your draft post for UNOS.  I guess I am, in terms of "doing what I thought I needed or could do" for another.  I donated in 2010 to a young man I didn't know, but had discovered his story and plea for a donor on the local evening news.  I thought I was at a point in my life where I could potentially help and turned out I could.  If that is "altruism", then I guess the dress fits.  I guess I don't care either way as I don't let that term, or any other define "me".  For that matter, even the donation does not specifically define who I am, but only what I was willing to do for another.  While I do see your point, I think UNOS and our donor community would be better served in celebrating the effort rather than the potential intent behind it.   Kudos for speaking out and voicing your opinion though.

Scott    8)
Scott

Offline PhilHoover

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Best advice
« Reply #14 on: July 07, 2012, 05:23:06 AM »
I've gotten since I donated my left kidney 32 months ago:

"Phil, you did a wonderful thing...now GET OVER YOURSELF."

I'm not worried about it being called "altruistic" or anything else....we are simply wasting time in cyberspace with being concerned about whether it is or isn't "altruistic."  I'm sure there are FAR more important things/issues which deserve our time, energy, and efforts.
Donated to a former college professor, October 28, 2009. Would do it again in a nanosecond.

 

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