From the Peoria Journal Star:
Public can weigh in on organ donation bill
Excerpt:
PEORIA —A public hearing is scheduled for 3 p.m. Tuesday in Springfield to receive comment on state Sen. Dale Risinger’s bill to establish a presumed consent policy for organ donation in Illinois.
Sometimes called the opt-out policy, presumed consent has been adopted by many countries and has significantly reduced shortages and waiting time for donated organs. Rather than requiring people to sign up to be a potential organ donor, everyone is considered a potential donor except those who specifically opt out of the program.
Risinger’s bill proposes a presumed consent policy applies for people 18 and older.
“This is an important first step to getting a law in Illinois that helps us have more organ donors. This is just the first step. To get it right, we need public input. The current bill is not in its final form,” said Risinger, R-Peoria.
Risinger’s stated commitment to soliciting public input seems pretty disingenuous. Outside of a few careful readers of today’s edition of the PJ Star, it’s a pretty good bet that the only people who know about today’s hearing are supporters of the bill. Predictably, the “public input” will reflect overwhelming support for a radical change in organ donation policy, simply because Risinger and his supporters have carefully stage-managed the coming show. Look how well the PJ Star article is managed – no voice of caution or dissent. A few phone calls to various bioethics departments would have yielded some. If you want to know just how radical this change would be, consider that Illinois would be the only state in the country with such a policy.
So why would anyone have a problem with this? I can only speak for myself – a former Illinois resident, but I’ll give a few basic objections.
First, the term “presumed consent” is deceptive – as is the term “opt-out.” In fact, you can’t really talk about “consent” at all with a bill like this, unless you think “imposed consent” makes any kind of sense as a term.
Second, some of us refrain from registering as organ donors because we don’t trust some of the lesser-known, but worrying realities regarding organ donation and attempts to expand the donor pool.
I’ll start off with brain death. Most people assume that since the state they live in considers them a corpse if they’re declared “brain dead,” then the state also imposes some sort of uniform standards regarding how that determination should be made.
That’s a comforting thought, but it’s not the reality. In fact, a 2008 article published in the Journal Neurology found wide disparities in how hospitals made determinations of brain death. It’s not surprising considering how the statutes relating to brain death were written (from the article):
In accordance with the Uniform Determination of Death Act, guidelines for brain death determination are developed at an institutional level, potentially leading to variability of practice.
Notice that the autonomy of individual hospitals is treated with a great deal more deference in the UDDA than Risinger and his colleagues believe Illinois citizens should have over their own organs.
In case you’re wondering, there have been a handful of cases made public in which people declared brain dead “miraculously” recovered. Zack Dunlap’s “miraculous” recovery is the most well-known. Not so miraculous when you know that some institutions aren’t as rigorous as others at making those determinations.
Maybe medical professionals aren’t all that hung up on whether or not the determination of brain death is accurate or not, anyway. Over the past several years adoption of the Donation after Cardiac Death protocol has allowed harvesting of organs from individuals within a short (a very short time) after their heart stops beating, usually through removal of a ventilator. The issues here are too long and complicated to get into, but there are already some pretty troubling stories associated with the protocol that should give any reasonable person pause. For more information on that, I recommend reading this link on Ruben Navarro, this one on Kaylee Wallace, and this article by Dick Sobsey on “Schrödinger’s Ethics.”
Does that mean I would never be an organ donor? No, it doesn’t. What it does mean is that my family knows that if I am declared “brain dead,” they will demand to know exactly how the determination was made and how that stands up to the standards determined by the American Academy of Neurology. If the “gold standard” has been met, they can get the organs.
I am not OK with the donation after cardiac death protocol and my family knows this.
See how much there is to discuss? Wouldn’t it be a great idea if Risinger decided to actually open this bill up to a real debate? Isn’t the public entitled to something better than what looks like a stacked deck masquerading as an open public dialog?
For more info on this bill, please check out the following link:
Bill status for SB3613 (includes link to full text of legislation)
According to the PJ Star article, testimony can be emailed to Sen. Risinger here. He says he wants to hear from the public. –Stephen Drake
Addendum: In my haste, I forgot to thank Nancy Valko for alerting me and others to this bill. I doubt I would have heard about it without her digging out the information and sending it on.
What if your family member has not “opted out” but you do not want her to have to have her organs donated? Is it presumed that she wanted to donate her organs, or does the family have a choice?
In a society where too many view the disabled as useful for organ donation exclusively – I actually heard a college student make such an insulting reference – you had better believe that I want the laws throughout America to default on the side of protecting life rather than presuming permission to part us out like used cars – may God save America from the slippery slope upon which we find ourselves teetering today. I’m not dead yet and I want to live!
This is America, where one presumably cannot be deprived of life or property without due porocess of law. We of the disabled commuinity do NOT want to be rendered vbulnerable to extinction under anyone’s presumption that we agree to being robbed of our votal organs at ANY point and it is precisely BECAUSE the presumption has been abused to the premature loss of our very lives in the past therefore it is necessary to just say NO to organ donation concerning our community – let’s not permit America to become like the Nazis during WWII – I’m not dead yet and I want to live, which is why I have made it very clear to my family that I do NOT want to EVER be considered an organ donor!
Lauren,
from what I’ve read so far, it looks like most medical institutions would be reluctant to go against family opposition, but technically they would have the right to do so under a law like this.
vtdelacy and Victoria,
I’m reading a current case right now that highlights a pretty clear abuse of family and individual rights in a case related to organ harvesting. I’ll try to write about it tomorrow. Some of the details are disputed, but there was clear wrongdoing and a breathtaking interpretation of a “good faith” standard as a bar to criminal prosecution.
Due to technical difficulties, Rita Marker, Director of the International Task Force on Euthanasia and Assisted Suicide, was unable to post this comment to the blog yesterday:
Great commentary. Like you, I support organ donation (in fact, my oldest son who is a police officer donated a kidney to the wife of a fellow officer).
However, to force everyone to be an organ donor unless the person goes through a process to “opt out” is not wise. How many people would never know that they or their loved ones are automatically
organ donors?
Rita Marker
First,
Let me share the website for the International Task Force – it’s an excellent resource, largely due to Rita’s work:
http://www.internationaltaskforce.org/
Rita,
You bring up a good point about the degree of ignorance that will exist about a “presumed consent” policy. I actually have personal experience with such a policy – but this one that was limited to one of the notorious artificial blood studies.
A hospital near my old workplace in Illinois was one that participated in the Polyheme study that was an “opt-out” program. I had to wear a rubber wrist band for over 6 months declaring I was *not* to be “enrolled” in the study if I was in an accident. There was no one in the neighborhood around our workplace who was aware of this study or what it could mean for them. In each and every instance, me telling a neighbor or coworker was the first they heard of it.
My guess is that the implementation of a “presumed consent” policy for organ donation would be big news initially. But a significant portion of the population still would miss that news even at that time.
And after that, people would start to forget, until there was a sudden unexpected and ugly reminder. –Stephen
Thank you so much for sharing this. I’ve blogged about it, with a lot of very informative links — including pictures of a “brain dead” woman who is still moving.
Stephen, you bring up a great issue of the total lack of informed consent. Since when should we simply presume that a person would consent to surgery, especially fatal surgery?
I have a further objection, which is a religious one, to organ harvesting. The Tenth Commandment:
Thou shalt not covet thy neighbour’s house, thou shalt not covet thy neighbour’s wife, nor his manservant, nor his maidservant, nor his ox, nor his ass, nor any thing that is thy neighbour’s. (Exodus 20:17)
I would think that vital organs would constitute something that is thy neighbor’s! An organ harvesting society enshrines the coveting of one’s neighbors vital organs! How can this be justified from a scriptural standpoint for Jews and Christians? While we have no right to impose this stricture on others, churches and synagogues ought to encourage people to stand apart from this.
I don’t want my organs donated, which would possibly prevent “harvesting” before I’m dead. I don’t want to rely on family. Keeping in mind that I come from Orthodox Jewish family (am atheist Jew now)background, in the last generation (with a smidge of WASP, also), where cutting a body after death is a no-no (as in autopsy). (Yes, I am aware of the organ donor programs associated with some ultraorthodox Jews; I sometimes monitor the radio show on one NYC station.)
I have also heard news stories about tissue “harvesting” from
mortuaries.
Probably not a problem, since I read that very allergic people are not good donor “material”. I hope somebody reads the chart/bracelet – ME/CFS and allergic asthma.
GrannyG,
Thanks for your comments. I have never claimed to be an authority on anyone’s scripture, Christian or otherwise. My task, as I see it, is to stick to some fairly basic secular issues that get ignored when the “battle lines” in these issues get defined in terms of the “culture wars.”
Also, like a lot of disability activists, I see more class issues affecting these debates than is generally recognized. Bioethics isn’t just *secular* – it emerges from the values of the most privileged segment of the most affluent society this planet has produced.
And that segment of society has decided some things like euthanasia are good things for those sitting at the top of the socioeconomic pile – and don’t care much how things trickle down – or on – the rest of us.
–Stephen
Many advocate selling organs to increase supply, but I think this is ethically problematic. I understand your point about cardiac death also. Are we changing the definition of death in order to increase the reservoir of available organs? See http://bit.ly/cnmQzt