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.

RESPONSIBLE JOURNALISM WANTED: DEAD OR ALIVE - NOT BOTH

Determining that a human being has died is not an arbitrary process. It does not happen solely on the assessment(s) of untrained observers. And importantly, it does not necessarily follow the temporary absence of a beating heart. If it did, the majority of surviving heart bypass patients would be considered to have died and been resuscitated. Cessation of the heart beat (and motion of the heart) is necessary (for most patients) during that operation so that the vein graft can be safely sutured to the blocked coronary artery. The accurate interpretation of those events is that the heart has been arrested, blood has been circulated to the brain (and rest of the body) by the heart-lung bypass machine while the vein graft is delicately connected, the heart has been restarted (with an electric shock) and the patient has awoken following a standard procedure. The patient was alive throughout.

Journalists reporting about deaths or near-deaths must understand and adhere to these fundamental concepts to avoid misleading the public. Use of the terms "death" and "clinical death" must be reserved for specifically defined circumstances, not casually applied for dramatic effect. Unfortunately, in their zeal to report a recent heart-warming and highly emotive story, both FOXNews and CNN made errors that should not be expected from them. It appears that a pregnant woman suffered a sudden cardiac arrest, was supported with CPR by co-workers, had her heart restarted with a defibrillator, was taken to a hospital where an emergency C-section was performed, had a pacemaker inserted and is alive 3 months later. A wonderful story of skill and resuscitation. The problem is that both news agencies reported that the woman died and came back to life!  In contrast, it seems clear that she had never met the clinical definition of death - fortunately.

If highly reputable reporters cannot distinguish life from death - or do succumb to the temptation of sensationalist reporting without honoring an obligation for accuracy about use of those terms - how can we expect the average person to comprehend the end-of-life scenarios in which organ donation becomes possible? Such high profile stories seek and do grasp the public's attention, perhaps seeding subconscious beliefs about an inability to truly identify death or recognize a potential for resuscitation. Such subtle misleading messaging may be quite harmful to trust and to organ and tissue donation even if that was unintended.

Consistency (and integrity) in all communications about the definition of death is essential to promote the type of public trust in the medical system that will save lives when consent is granted for organ and tissue donation. Subliminal messaging evolved from publicized stories of miraculous recoveries from death, when death did not actually take place, is counter-productive and costs lives. If you come across other egregious examples of inaccurate reporting, please post a Comment on this blog. Shining the bright light of publicity on these unfortunate stories may help to reduce their frequency.

UPDATE: SIGNIFICANT CONGRESSIONAL PROGRESS ON IMMUNOSUPPRESSION CATCH-22

Progress in Congress is exciting. Slow progress is better than none. The awful immunosuppressive drug Catch-22 that limits Medicare coverage of the anti-rejection drugs for renal transplant recipients to (80%) for 36 months, jeopardizing both the kidneys and patients if they can't afford the medications and resulting in a return to expensive dialysis - which is again supported by Medicare, has been approached with new bi-partisan legislation in Congress. Since my blog post of March 7, 2013 the mate bill to Senate Bill S323, HR 1428 has been introduced by Representative Burgess (R-TX ) on April 9, 2013 and was sent to both the House Ways and Means Committee and the Health Sub-Committee of the House Energy and Commerce Committee.

Multiple new sponsors have "signed on" to each of the two bills currently sitting in their respective House and Senate committees. In congressional/political language this is highly significant progress.

New supporters of Senator Durbin's Senate Bill S323 include Udall (D-NM), Wicker (R-MS), Gillibrand (D-NY) and Whitehouse (D-RI). This brings the number of co-sponsors to 9, and the percentage of senators clearly supporting the bill to 10%.

HR 1428, the House version of the Comprehensive Immunosuppressive Drug Coverage Act for Kidney Transplant Patients Act of 2013 now has a total of 45 co-sponsors. Newest supporters include Johnson (R-OH), Latham (R-IA), Lofgren (D-CA), Posey (R-FL), Roby (R-AL), Tierney (D-MA), Schock (R-IL), Smith (D-WA), Levin (D-MI), Payne (D-NJ), Gosar (R-AZ), Lipinski (D-IL), Moore (D-WI), Braley (D-IA), Ellison (D-MI), Schwartz (D-PA), Bonner (R-AL), Connolly (D-VA), Hurt (R-VA), Lowey (D-NY), Courtney (D-CT), Pingree (D-ME), Owens (D-NY). Together with Burgess, the original sponsor, that makes 46/435, 11% of representatives clearly supporting the bill in the House.

As stakeholders and constituents who are eager to support this bill (to change the Catch-22 and save these kidneys and patients) our action steps are to make our voices heard. Phone calls and/or e-mails to our own politicians WILL be noticed if they come in sufficient numbers. Constituents' opinions do matter to politicians. Follow the steps outlined here to be heard. I can report e-mailing my own representative, Dan Maffei (D-NY) but receiving no response. To coordinate with the posting of this blog, I will reach out to him again. Let us know in the Comments section of this blog what your experience is!

NOW A LIFE IS SAVED WITH AN EMERGENCY FACE TRANSPLANT IN POLAND

What happens when the center of your face and skull are suddenly destroyed by a machine meant to cut stone.......and you don't die. Amazingly, Grzegorz was kept alive by healthcare teams in Poland for three weeks but had no ability to speak or breathe independently. The raw surfaces that had been grotesquely cut left him vulnerable to infections of the bone, central nervous system, throat, bloodstream, etc. By reports, his medical condition was deteriorating, as one would expect. How could he live this way for long? His Polish doctors arrived at a dramatic solution - one they felt technically prepared to perform though it had never before been attempted or accomplished. An emergency face transplant  was necessary to save his life. And they succeeded, at least in the early phase. The transplant was one week ago. So far, so good! And now there is a short term survivor. Thanks to their expertise and hard work......and thanks to the gift of the deceased donor.

Within a few years of the very first face transplant having been performed, world citizens are almost insensitive to the magnitude of the evolutionary steps we are so rapidly witnessing. Yeah, just another face transplant - what's the big deal?! Well, the big deal in this situation is truly enormous. First, the concept of successful face transplantation had already been established.  When Grzegorz was in need, the procedure had already been developed and was in his surgeon's repertoire. Though the Polish team had not performed a previous face transplant, they had prepared as best they could on the basis of the limited, collective world experience. No one could have completed their own "learning curve" for this procedure yet since fewer than 30 cases have been performed worldwide. This is what innovative and bold surgeons do best. We must find ways to promote, not suppress these tendencies in surgeons when they are appropriate. Look at the result!

Whether Grzegorz lives (as we all fervently hope) or dies, it seems that this face transplant was really his only chance. Without having reviewed his records (which I have not) it seems that what distinguished his injury from the other face transplant recipients was the depth of the wound and exposure of the protective layers of the brain. These features were probably why his team felt that infection(s) would inevitably cause his demise if covering to the portals for micro-organisms could not be established. And those infectious critters were in plentiful supply because of the simultaneous injuries to the respiratory and oropharyngeal pathways, each of which harbor abundant quantities. The desperately required covering was the bone and soft tissue of the face that was transplanted. Could a face be found and transplanted before irreversible and lethal infection set in? This is what we are all waiting to learn. Was the patient's life still salvageable? Was the gamble worth it?