Categories
Liver Donor Living Donor Risks

Living Liver Donor Dies

http://www.boston.com/yourtown/burlington/articles/2010/06/12/at_the_lahey_a_stunning_rare_tragedy/?page=full

I am saddened by this useless death for the obvious reasons, but I’m also furious with surgeons and hospital personnel that express sympathy in one breathe then minimize the tragedy in the next.

“This should not stop the movement of doing the right thing for patients,’’ Dr. Giuliano Testa, director of liver transplantation at the University of Chicago Medical Center, said. “We should take this as a single episode and not a reason to completely destroy the living donor activity in the US.’’

This = The hospital caused the death of a healthy, generous person by cutting them open and removing 60% of their liver. Testa, recognizing the full horror of the situation, can’t even say it out loud so he refers to it as “This“. Pathetic.

the right thing = transplants, of course.

patients = would-be recipients.

So the right thing for patients = we must not let the fact that we’ve killed and maimed people needlessly cuz dang it, obtaining organs for would-be recipients is more important. Besides, the donors are ‘willing’, so who are we to argue. After all, you gotta break a few eggs to make an omlet, right?

“Our deepest sympathies are with the families involved,’’ Dr. David Barrett, the clinic’s chief executive, said in an e-mail to employees. “Our thoughts today are also with the surgical team. They are extraordinary caregivers dedicated to healing patients even in the most trying circumstances. While we are saddened by this loss, we must continue our mission to offer life-saving treatment options like this to our patients.’’

Yes, the poor, poor surgical team. How horrible this must be for them.

They are extraordinary caregivers dedicated to healing patients = Again, ‘patients’ refers to recipients because living donors receive NO benefit (or healing) from being a donor.

… even in the most trying of cirucmstances = What trying circumstances? Prospective living donors are supposed to be evaluated to rule out any and all risk factors. Medical professionals are obligated to minimize harm. Is Barrett saying they didn’t, or is he simply saying that the death of living donor is really inconvenient to his almighty surgical team’s pursuit of doing transplants?

The donor’s family will be dealing with this catastrophe for years to come. I cannot begin to express my sympathy for them. My anger is reserved for a transplant industry that forges ahead without regard to the wreckage they leave in their wake. Just once I’d like see them express true remorse without justification or denial. Every news story on every donor death that makes the press (many are covered up) will express the same sentiment. Every center has no living donor deaths – until they do.

Dr. James Markmann, chief of transplant surgery at Massachusetts General Hospital is right about one thing: you do enough living donor transplants and eventually donors will be maimed and die. The question is – what is the transplant industry going to do about it?

Categories
Ethical Considerations Liver Donor

Living Donor Faux Pas

Recently, a post appeared on a message board from a prospective liver donor whose recipient died before the donor evaluation process could take place. Naturally, what followed were words of condolescence, sympathy and concern.

Then an unrelated kidney donor (meaning, someone who donated a kidney to an individual not emotionally tied to them) posted the following (in part):

You might want to give some thought in the future of possibly donating a kidney… There are SO many people that you have never even heard of whose quality of life could be improved by such a gift. But better to let your emotions settle down a bit before making such a decision.

If you’re not already disturbed, and I hope you are, I’ll explain why this was a wholly inappropriate thing to say.

On a broad level, one simply shouldn’t respond to expressions of vulnerability with suggestions. Women generally accuse men of this – trying to ‘fix’ a problem when a solution was neither wanted or required. Sometimes this occurs because a person simply doesn’t know how to respond to someone else’s emotionality. Other times it’s just an inability to get out of one’s own way.

Remember: anything important enough to be felt as a loss cannot be replaced. One would not tell a new widow, “I’m sorry for your loss. When you’re done grieving, call me because I have someone I’d like to set you up with”. Neither should one think that recipients are interchangable, especially when the original is a relative (uncle) and the alternate is a total stranger.

Here’s where we become situation specific. The overwhelming majority of living donors are blood relatives of their recipients, and the next biggest percentage are emotionally tied (spouse, friend, etc). The smallest chunk are the so-called Altruistic, Stranger, or Anonymous Donors. While the behavior of donating an organ might be the same across both groups, the motivations of Emotionally/Blood Related and Unrelated Donors are quite different.

Related Donors are invested in the well-being of their loved one. Their decision to donate is inextricably tied to that specific person. They are not interested in living donation in theory, or as an exercise, but only as a means of helping the person they care about. An Unrelated Donor, otoh, is attached to the greater concept of ‘saving a life’ via living donation. The act of donating is its own end. Consequently, the recipient of the Unrelated Donor’s organ is relatively (as it pertains to the overall experience) insignificant*.

Consequently, telling a prospective Related Donor that a stranger is as worthy of their beneficence as their loved one has the potential to be incredibly insulting. Unfortunately, if the person offering the suggestion is an Unrelated Donor, it’s quite possible they won’t understand why that’s so.

Which is exactly what happened in this case. When the gaff was pointed out, the Unrelated Donor emphasized the sympathetic portion of their sentiment while refusing to acknowledge the inappropriateness of their (in their mind) well-intentioned suggestion. In fact, they accused the person who brought it up as being anti-living donation. The Unrelated Donor in question should know better on both counts, the original remark and the defensive smear – after all, s/he’s a member of the clergy.

*Some Unrelated Donors will disagree with me on this, but think about it – what’s the difference between one stranger and another? If it’s not one particular single mother profiled in the newspaper, it’s another equally anonymous one on a website. In fact, it’s exactly what Steve Jobs and the proponents of the CA living donor registry are banking on.

Categories
Ethical Considerations Liver Donor Living Donor Misinformation

No More Mercy

Tonight NBC’s “Mercy” just lost me as a viewer. All season I’ve been enjoying the show about the Army nurse returned from Iraq with PTSD. I’ve found kinship with her detachment from the people closest to her; her hyper-emotionality; her attempts to play “normal” while hiding in a bottle a man, or something ultimately self-destructive – I especially cheered her on when she pummelled an abusive mother.

As of tonight I’m done.

Two sisters injured in a car accident, the fault of the 21 yr old driver’s blood alcohol level. Turns out the girls have the same father; the oldest girl’s mother died when she was five, so the woman who raised her is her stepmother – yes, family tension abounds. As scriptwriters would have it, the younger sister threw a clot and remains in a coma while the older sister’s liver sputters to a halt. The stepmother is a 5/6 match.

First off, this news was delivered to the ENTIRE family (parents and daughters). Secondly, the medical personnel and husband/father immediately began pressuring the wife/stepmother to pony up the lobe. Third, there was absolutely NO mention of risks to her, only the ‘life saving’ benefit to the recipient. Fourth, and the proverbial nail in the coffin, even after the wife/stepmother expressed her ambivalence, my favorite nurse cornered her later, giving her a big lecture to convince her that donating was the ‘right’ thing to do.

I cannot adequately express my repugnance for the continued misrepresentation of living donation in popular culture. These characterizations perpetuate the idea that there is no good reason for someone NOT to donate, and prey on the misconception that family relationships include a presumptive obligation to put one’s life at risk, no exceptions allowed. All of which is complete crap.

Since I’m a Vote-With-My-Feet kind of girl, I will no longer be tuning in to NBC on Wednesday nights. I suppose I should thank their ignorant and short-sighted writers; they just gave me an hour of my life back.

Categories
Informed Consent Liver Donor Living Donor Protections

Brothers Sue UPMC Over Informed Consent

Two brothers who participated in a living liver donor transplant at University Pittsburgh Medical Center is suing the hospital and Dr. Marcos, former transplant chief, for “fail[ing] to give the brothers all of the information concerning the dangers of live liver transplantation.”

UPMC was involved in a scandal involving improper liver transplants, resulting in (among other things) the termination of Marcos, so it would be easy to dismiss this lawsuit, or its basis, the lack of Informed Consent, as an aberration or at the very least, relegated to a single transplant center. However, anecdotal evidence and at least one published study say different.

Housawi (2007) surveyed 203 transplant professionals at 119 cities and 35 countries* regarding the risks disseminated to prospective living donors during the Informed Consent process. While at least 77% claimed** to discuss hypertension and proteinuria, the worrisome prospect is that that 23% do not. Worse, 84% of those surveyed did not believe having a kidney removed increases the risk of cardiac disease despite the plethora of published evidence that any amount of renal insufficiency (drop in kidney function) is strongly correlated with cardiac issues.

Housawi’s inquiries were relegated to longer-term consequences of living donation and not the information dispensed about possible surgerical or short-term complications, which is what the UPMC lawsuit focuses more closely on. But story after story from living kidney and liver donors taking place on forums, message boards and mailing lists indicate that transplant centers are failing in that regard too. Nerve damage and hernias are most frequently reported, as well as gastic-intestinal blockage and damage, yet surgeons are neglecting to inform their prospective LDs of the possibility. Testicular swelling and sensitivity requiring surgical intervention occurs in approximately 10% of male LDs (more frequently in men who have undergone vasectomies), but men with the complication report months of haggling with their physicians over the cause and treatment of their issue, mostly because the medical professionals didn’t know it was a possible consequence of the surgery (!) It’s a reasonable assumption then, that prospective male LDs are not being asked if they have undergone vasectomies, nor warned of this potential complication.

There have been other lawsuits filed against transplant centers for a variety of living donor complications and deaths. Unfortunately, each and every one settled before they ever saw the light of a courtroom. This allows the transplant industry to continue their negligent behavior, complete with confidentiality agreement.

The complications incurred by the plaintiffs in the UPMC case are tragic. While nothing can be done to undo their pain or sense of betrayal and violation, they are in a position to improve how living donors everywhere are treated. A courtroom precedent can go a long way toward sending the message that living donors are deserving of respect, and being related to the recipient does not give the transplant industry license to decieve and abuse them.

*Most transplant professionals were from North America(45.1%) (USA 39.6%, Canada 4.0%, Mexico 1.5%),followed by Europe (31.7%) (UK 8.4%, Germany 6.4%, Belgium 2.5%, Netherlands 2.0%, Czech Republic 2.0%, Norway 2.0%, France 1.5%, Italy 1.0%, Sweden 1.0%, Switzerland 1.0%, Denmark 0.5%, Finland 0.5%, Northern Ireland 0.5%, Poland 0.5%, Serbia 0.5%, Spain 0.5%, Cyprus 0.5%, Scotland 0.5%), Asia (14.4%) (Saudi Arabia 8.4%, India 1.0%, Korea 1.0%, Lebanon 1.0%, United Arab Emirates 1.0%, China 0.5%, Thailand 0.5%, Kuwait 0.5%, Syria 0.5%), Australia (4.5%), South America (2.5%) (Brazil 1.5%, Argentina 1.0%) and Africa (2.0%) (Egypt 1.5%, Libya 0.5%).

**even the researchers acknowledge that there may be a difference between what survey participants report and their actual behavior.