Thursday, June 6, 2013

COMPELLING PATIENT WITH A POIGNANT STORY

The moving story describes a person desperately in need of an organ transplant(s) that may not happen in sufficient time to avert death. We learn that  (first name) (last name)  is ____ years old. He/she has failure of the (heart, intestine, kidneys, liver, lung, pancreas - circle all that apply) caused by ___________(fill in disease name).  He/she is a mother/father/daughter/son/sister/brother/husband/wife/other  (circle all that apply). When healthier, his/her time was spent in work/study/other for ____________. The primary reason that (first name) wants to be transplanted is to "_________________" (use patient's own words). Others want him/her to receive an organ(s) so that ________________.  He/she has been waiting on the list since (fill in month or year, whichever sounds more compelling) but is losing hope.

This bare boned, generic outline of a person dying from organ failure and hoping to benefit from a life saving organ transplant describes virtually all of the patients actually waiting for organs.

It may seem callous to distill a real person's desperate hope for transplantation into such a brief, apparently generic story as simple as the one that was sketched out above. Indeed, each of the >118,000 people waiting for organ transplants in the U.S. and thousands of others around the world does have a unique lifestory to tell that is truly heart wrenching when fully appreciated. Each is a real human being with a life partially lived but also partly unfulfilled. Each wishes to live longer. Some will. Some won't. When the details of that human being's life are stripped away from the relevant story outline leaving the virtually naked transplant candidate waiting in line without accoutrements, it becomes more feasible to assess the legitimacy of that person's claim to transplantation. But how to do that?

The only reasonable way to decide who will be winners is to have a transparent system of rules that applies to everyone and cannot be altered because one person's story is related in an especially compelling manner.
This system will necessarily seem harsh and unfair to the losers. It will probably also seem harsh but fair to the winners. And this system is administered by computer, not human beings.

It should not be forgotten that this is a "zero sum" situation. When one  patient with a poignant story wins, another deserving, compelling patient loses - and dies. Each is represented by a transplant team fully invested in their survival. They may even be listed at the same transplant center. In that case the same transplant team (real people with real feelings) deals with both the joy of caring for a surviving patient and the sorrow of caring for a non-survivor.

The only reasonable outcome is for every reader, for everyone who cares about one or more of these patients, and for every person who understands that some day they too may be telling their own story in the hope of being a winner, to work earnestly addressing the organ shortage. Register to be an organ and tissue donor now......tell your family.......and ask others to do the same.