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Sunday, June 12, 2011

What's in a Name?

 This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.
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January 20, 2011
"Tis but thy name that is my enemy.Thou art thyself, though not a Montague. What's Montague? it is nor hand, nor foot, Nor arm, nor face, nor any other part belonging to a man. O, be some other name! What's in a name? That which we call a rose. By any other name would smell as sweet."
~Romeo and Juliet, William Shakespeare

Well Juliet, there is a lot in a name. And when we don't name things properly, things get tricky. What I would like to figure out  is what the true name or label is for a person in my shoes, wanting to donate their kidney to a stranger.  I think much of the "problem" I have been experiencing stems from the fact that all parties involved (including myself, the program, the Kidney Foundation, other bloggers-recipients and donors and perhaps even Canadian Blood Services) use three different names for donors like me interchangeably. The problem with that is each of the three names or labels actually means something very different.  I think what might be good in the future is if everyone involved in the program picked one and went with it so that the risks and rules could be more clearly laid out.  Don't get me wrong-there is overlap in what they all mean but some have a much greater focus on certain things than others.

The first name used is "anonymous donor".  This one is pretty easy to define.  Basically this kind of donor gives their kidney to a stranger and there are no names or identities attached.  They don't know me and I don't know them.  The various transplantation program endeavor to keep it that way until after the surgeries as to not have anyone "change their minds" based on their perceptions of the other party.  Other than my recent experience with the no blogging rule, I haven't seen any strong evidence or measures taken to protect our identities but that's not to say it doesn't happen.  I have read they avoid smaller transplant centres to be able to keep everyone separate before surgery.  Other than that though I am unclear if there are specific procedures to keep things a secret. This name seems to focus more on the secrecy of identity rather than the donation itself. While I have yet to receive a paper copy of the social media/media policy from the folks at Foothills, the only 'risk" they clearly alluded to was something to do with anonymity (although they still weren't very clear on that).  In theory, I am not to know who is receiving my kidney before I donate, nor is the recipient supposed to know anything about me. I am not going to get into the details as to whether or not I agree that the blog would be a guarantee we'd know who each other is ahead of time (I don't think that is a huge risk). 

Another label used interchangeably with the first is "non-directed donor".  To me, this means I have something I'd like to give, but I have no one in mind to receive it but I am still willing to toss it in the ring (so to speak-there will be no actual kidney throwing as part of this journey).  This label does not imply anonymity at all.  I liken it to making a large cash donation to a charity.  I could opt to set up some kind of special program within that charity with the donation but more likely I am just going to give it to the charity and they will apply it in whatever area makes most sense to them.  I have no say in it.  Nor am I asking to be anonymous-or more to the point, keeping my identity a secret is not a condition of my donation or their ability to receive it. This label seems to have more to do with the lack of assignment to a  specific recipient than anything else.  And this is the one both the Southern Alberta Transplant Program and Canadian Blood Services use in their written information materials if/when they refer to people who aren't donating to someone they know.

The third is "altruistic donor".  An altruistic donor is someone who would like to give the gift of a better life to another human being. This is also known as a Good Samaritan Donor although altruistic seems much more common in Canada.  I think this name or label is meant to focus more on the "gift" aspect of the donation process. It's more about emphasizing the "goodness" in what the donor is doing and the selflessness.  Basically it describes the warm and fuzziness of what the person is doing by choosing to donate and isn't meant to describe the logistics of the donation event itself or describe the lack of relationship in the parties involved. I would argue that it shouldn't imply anonymity. For example, I think donating to your neighbour, brother or cousin is just as "altruistic" by definition as donating to someone you don't know.  Altruism by definition is a selfless concern for the welfare of others. Period.  Doesn't matter if you know them or not.  Actually I think for some people donating to a family member might even be harder because there is a lot more emotional conflict and pressure there. And if the transplant fails, I think that would be FAR harder to get over than for someone like me who doesn't have that emotional investment with the recipient.

I think you get my point.  If we could better identify what we are calling donors like me from a patient label stand point we could more clearly identify the risks and therefore better assign guidelines to rank and mitigate those risks   When you use three very different labels on some one like me it makes it more likely that rules will change a long the way because the risk focus changes along the way. Confusion will inevitably set in and bad feelings will occur.

**In case you were wondering I prefer the non-directed donor label.  It still allows for the option to ask for anonymity but it doesn't imply that it is mandatory.

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