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Deceased Organ Donation

NY wants ‘presumed’ consent for organ donation

http://roomfordebate.blogs.nytimes.com/2010/05/02/should-laws-encourage-organ-donation/

The current US system is opt-in, meaning that everyone is assumed NOT to be an organ donor unless they specifically stipulate they wish to be. This directive can be vetoed by the family/next-of-kin. NY has introduced a bill to create an opt-out approach, meaning that everyone in NY is assumed TO BE an organ donor unless they say otherwise. Families will no longer have veto power.

The four opinion pieces aren’t that illuminating, and one avoids the question completely to harp endlessly on her only goal, paid LIVING donors. But the comments say a lot about where Americans’ heads are at regarding organ donation.

1. The current organ transplant system is flawed.

Very much so. Currently about 1/3 of names on the wait list are ‘inactive’, meaning the individuals cannot have a transplant even if an organ does become available. Also, over the majority of ‘deaths’ reported on the wait list are those ‘inactives’, meaning that not only is the shortage problem overreported, so are the deaths due to the shortage.

Also, as Steve Jobs demonstrated, would-be recipients can ‘multiple list’, meaning they can register in different hospitals throughout the country in order to increase their chances of receiving an organ. Not only is this the difference between buying one raffle ticket and ten, it also spotlights the problem of ‘geographical hording’, where hospitals offer procured organs to their patients first, then the larger region and then finally the whole nation, creating different wait times across the country for needed organs.

Let’s also not forget that transplants aren’t cures, so a certain percentage of people on the wait list have already been through at least one transplant. Their lives have already been ‘saved’ at least once, yet they are given the same priority as everyone else.

2. Hospitals will let me die if I’m an organ donor.

Despite the plethora of urban legends afoot, I simply don’t believe this to be true. However, there is much debate about the definition of ‘death’ due to the fragile nature of organs and the short time they can be harvested.

3. People without insurance can’t GET transplants, so why should they be encouraged to GIVE organs?

There was a study I read recently that cooroborated that very statement, essentially saying that uninsured folks were much more likely TO BE organ donors than they were to be the beneficiary of donated organs. It’s a flaw in the US healthcare system that some folks aren’t willing to overlook, and I can’t say that I blame them.

4. Everyone else makes money from organ transplants, so why not the donors?

My understanding is that the procurement hospital really doesn’t profit from the situation, but the surgeons and center where the transplant takes place does make big bank. However, that being said – where would this ‘compensation’ come from? The government – proponents of small government or fiscal responsibility would find many issues with this. The recipient’s insurance company – that’s only going to happen if we legislate it and premiums are guaranteed to rise. Secondly, compenation of any sort immediately runs the risk of coercion. Libertarians may argue autonomy, but clearly they’ve never been put in a desperate position.

5. One commenter, a former OPO employee, insists presumed consent is a bad idea because families are not told the truth about what happens to the donor or the donated organs. He cites profits as well as general treatment and otherwise distasteful topics. Obviously I can’t comment on the specifics because I’m not an expert in that area, but based on my experience as a living donor, I have no problem accepting that families are only given half the story. After all, living donors aren’t told the truth about their risks, and they have to live the rest of their lives with the reprecussions; why the hell would the hospital dispense any information that might make a family deny the donation?

My opinion on this specific bill is unresolved due to lack of information and context. However, I am a firm believer in maximizing deceased donation in lieu of the medical industry’s recent crunch to expand the living donor pool. Other countries have seen great success with presumed consent, but they have also invested in their organ donation and procurement systems, which the US has so far failed to do. There’s also the issue of their ‘universal health care’ which eliminates all discussion of outstanding medical bills and financial responsibility. The medical personnel in those countries are not blinded by profit, making it far easier to focus on ethical behavior and quality control instead.

4 replies on “NY wants ‘presumed’ consent for organ donation”

With all due respect, Cristy, I think you should stick to what you know, namely, what it's like to be a living organ donor, and leave it up to people like me to speak on the subject of deceased donation.

You see, on October 5, 2001, my husband and I learned about deceased donation in the hardest of all possible ways when we were asked to donate our beloved 18-year-old son's organs after a car accident. Having only heard good things about organ donation, we said "yes." We didn't realize until after the fact the extent to which we had only been spoon-fed one side of the story–the pro-organ donation side, and that is simply not good enough!

More than it can ever be said that getting an organ transplant is anyone's right, it should be the right of those who are asked to do the donating to be FULLY informed.

While I appreciate the comment, it would've been more helpful had you actually stated specifically where you disagree with my position, and detailed your experience.

No disprect, but if "people like you" want to speak on the subject, you might actually want to identify yourself and – well – speak on it.

Please come back and do so.

Alrighty then… My name is Kathy. I'm 61 years old, and I've been married for almost 42 years to a Marine Corps Vietnam veteran who works as a metallurgical technician in the steel industry. My husband and I have three daughters in addition to our son who died, and we also have six grandchildren. And oh, yeh, like you, we live in Ohio–just a hop, skip, and a jump from Oberlin College where I used to work in the Controller's Office before I entered the world of real estate from which I have since retired.

I found your blog totally by accident just the day before I posted my "anonymous" comment. Initially, after reading through several of the things you wrote here, I thought I might have found an ally in you–such as in your point "2." where you acknowledge that there is much debate about the definition of 'death' in the context of organ donation, and in your point "5." where you indicated that you are open to believing the former OPO employee who insists that presumed consent is a bad idea because families aren't told the truth about what happens to the donor or the donated organs.

Since those were two of the areas of deceased donation that my husband and I had problems with in our son's case, like I said, I thought I might have found an ally in you. But then you went right on to say that you are "a firm believer in maximizing deceased donation in lieu of the medical industry's recent crunch to expand the living donor pool." That's what compelled me to write and tell you that I think you should stick to what you know, namely, being a living organ donor, and leave it up to people like me to speak on the issue of deceased donation.

My husband and I can't go back and undo our decision to donate our son's organs anymore than you can go back and undo your decision to donate one of your kidneys to your sister, and I would appreciate it if in attempting to solve your problems with living donation you don't end up throwing good people like my husband and I even further under the bus than we already have been.

Four rather lengthy paragraphs and still nothing specific on your experience donating your son's organs. How can I, or anyone else, understand your experience or the deficencies in the system if you're unwilling to detail your story? The system will not improve if people don't speak up.

Regardless of how angry it might make you, or how much you disagree, I vehemently stand by my opinion that the deceased should be taken as organ donors before the living are considered. As you said (in a rather back-handed compliment, I might add, when I have been nothing but kind to you), living donation is what I know. Not just from my personal experience but from almost two years of intensive research and questioning. I'm sorry for whatever hurt you and husband have experienced but to suggest that your son, who obviously had life-threatening injuries, is synonymous with a healthy person who must live the rest of their life with the lies, neglect and abuse handed to them by the trnasplant industry is more than a little absurd. It's not as if living donors live in a vacuum; what happens to them affects their friends and family too.

So, if you are able to stop projecting your hurt and anger on to me, it would be helpful to my readers to know how the system didn't work for you. In fact, if you haven't already, I suggest contacting ACOT and HRSA since they are the agencies in charge of the federal tranplant program and therefore the folks who can actually affect federally mandated change.

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