Wednesday, December 19, 2007

The "Kidney Cult:" Should Choice be Everything in Health Care?

Several years ago, the Montana Supreme Court basically ruled that whatever a patient wants to do with a willing medical provider should not be impeded by the government. Not surprisingly, as I mentioned here at SHS, it bred a lawsuit to create a state right to assisted suicide in the Big Sky State. Many bioethicists share this autonomy ubber alles view, which I see as an offshoot of personhood theory and libertarianism, both of which generally hold that persons should be allowed to engage in whatever actions they see fit with regard to their own bodies so long as others are not harmed.

I take a different view, as readers of SHS know. I certainly believe autonomy is important, but not the be all and end all. Society has a right to put reasonable limits on "choice" in order to protect the common good and prevent individuals from harming themselves. This puts autonomy and paternalism into a dynamic tension, that will move one way on a particular issue and then the other on the next.

There is a religious group in Australia that puts these issues into vivid focus. From the Wall Street Journal story:

Ashwyn Falkingham wanted to donate one of his kidneys but didn't know anyone who needed one. With the help of a Web site, he met a woman in Toronto who was seeking a transplant. The two were a medical match, and he traveled from his home in Sydney, Australia, to Canada for final testing and, he hoped, for the surgery. It's a "simple thing that can help someone," says Mr. Falkingham, now 23 years old.

But it wasn't simple, largely because Mr. Falkingham is a member of a tiny religious group calling itself the Jesus Christians. The group's 30 members, who eschew many of society's conventions, have embraced kidney donation: More than half have given a kidney. They describe the act as a gift of love that implements Jesus's teachings. But critics, particularly parents of members, call the group a cult and charge that members are under undue influence of its charismatic leader.

So, should his kidney be taken as a matter of honoring his autonomy or denied as a matter of protecting him from possible coercion and protecting his health? And if he can be stopped, what about a friend of mine who gave a kidney to save an unrelated person's life (and had some difficulties recovering)?

I agree with this approach:
Many hospitals aren't interested in donors who don't have an established, personal relationship with the recipient. That is partly because of fears that such donors may be secretly--and illegally--paid. Other concerns: Stranger donors may be psychologically disturbed, unrealistically hopeful that donating a kidney will improve their own lives, or likely to back out.
I think that on this issue, the burden should be on the would-be giver to demonstrate that the decision to give a kidney is freely and voluntarily made for purely altruistic reasons. It seems to me the only way to prevent potentially irreversible harm being done to someone who acted in the heat of the moment or under some form of coercion or undue influence and later get giver's regret.

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5 Comments:

At December 19, 2007 , Blogger Royale said...

Then I suppose we should have a similar system to prevent people from gambling, joining the army, eloping, getting a tattoo, etc...as each could cause irreversible harm and all are too frequently done in the heat of the moment.

On another note, I have a serious problem with the discussion that this man is in a cult, and inferring from that, he is unduly influenced. Stripping that analysis to its real essence - it is far more than paternalism, it is a religion popularity contest where the good (i.e., popular) would never result in undue coercion whereas the fringe cults (i.e., bad) surely must be unduly coercive.

Frankly, I don't see any difference between the "undue coercion" caused by this man's "cult" and all the other far more popular religions, and I won't name names. Suffice to say I know a lot of religions - Christian ones too - that emphasize military service and all the irreversible harm that entails.

If we want to protect popular religions as nice, pretty choices, then we must protect this man's religion and all the "self-harming" choices he makes out of it.

Unless, of course, we want a religion popularity contest where the society coerces our belief for "our own good".

In another century, I would call that the Inquisition.

 
At December 20, 2007 , Blogger T E Fine said...

Problems of kidney donation -

Physical difficulties in recovery. Potential problems for the receiver. Stress disorder resultant from major surgery (both patient and donor).

Most of the members of his religion have donated a kidney. Rockin'. Now, do they know the details and talk to their members about why they think they should do this, and what it entails, or is it more like, "If you want to be a *good* member of our church, you *must* comply."

If it's the former, then his religion doesn't matter; I've had Catholic priests who talk about organ donation and why we believe it's a good thing and have asked for us to consider becoming donors. That's nothing more than asking us to consider our community.

I mean, as a Catholic I'm encouraged to go to the homes of shut-ins, to nursing homes, to needy families, and donate my time, money, and effort to help them. Their religion may look at kidney donation as something like that. Doesn't bother me.

But in that senario the donor is expected to understand why he's making this decision and does so of his own free will.

In the other senario, his free will is squashed by the "rules" that state that he's supposed to do X or else he will be rejected by his church. In this instance it's a matter of loving Law more than God - instead of doing the right thing of his own will and being encouraged to do it by his community, he's being forced or brainwashed into doing something without understanding the real reason or the consequences. All he knows is he "has" to do it and doesn't think it through.

If that's the case, you're not getting an honest donor, you're getting someone who's trying to get something out of you. In this case it's recognition in his community. In good conscience, the doctors, then, can't take the man's kidney. They have a responsibility to all parties. That means making sure the donor is doing the right thing *because* it's the right thing, and being properly informed about it.

And if the guy isn't, then, to protect him (because he's equally important as the person he wants to donate his kidney to), he has to be denied. In the instances of brainwashing and coersion, you're talking about someone who doesn't know that he or she is being harmed or about to be harmed, and she or he isn't in a position to defend him/herself. Suppose he's beign brainwashed by a need to be part of the community? If he's rushing headlong into the situation without the *ability* to think about the consequences, then shouldn't he be stopped?

So, yeah, individual case-by-case should be how it's handled. I have to disagree, Royale. His religion doesn't bother me, nor does it really matter. It's whether he's making the decision of his own free will or not. Then, it doesn't matter if it's a religious group, a gang, or an off-campus bar and grill meeting; it qualifies as coersion and should be stopped.

Personally? The guy doesn't seem like he was being coerced. I think he's legit, doing what he thinks is right given what he's learned from his community, and should be allowed to make the donation. I think that some of the parents of the members are frightened by something they see as force and are reacting badly. But again, I'm not there on the inside of the case, so I may be wrong. Still, I think he ought to be allowed to make the donation.

 
At December 21, 2007 , Blogger LifeEthics.org said...

Anonymous donation sounds like a benevolent thing to do. However, there's no getting around the fact that it is a risk to the life (immediate) and health (long term) of the donor.

I know a young man who somehow signed up to donate a kidney to a stranger. He had to register and be tested with the sole intent to undergo a dangerous operation and which left him with one functioning kidney, for now. The young man has small children and a wife who depend on him. He has 40 years or so of life expectancy. He risked death, infection and disability due to surgical complications and the possible future medical and surgical problems due to scaring, adhesions and at least a small risk due to the loss of the built-in redundancy of that second kidney.

How can he go to the hospital, knowing that his wife may be widowed and his children orphaned because of his intentional act?

I'm not sure it was responsible - the act of a good steward - for him to go out of his way to absolutely and intentionally put his life and his family's welfare at risk when there is no pressing need within his family or circle of friends. I've tried to compare it to joining the military or the usual directed donation to a family member. However, there is an extra step of intentional action - signing up - that doesn't feel right.

Surgery is at least as dangerous as recreational parachuting and motorcycle riding -I might even say more dangerous than smoking in the short term - I don't like or encourage those activities for parents of young children, either.

However, I'm not sure any of them ought to be against the law. Just strongly discouraged.

 
At December 21, 2007 , Blogger Wesley J. Smith said...

Lifeethics: That is just about how I see it, too. At what point does our altruism begin to cheat others and constitute a violatiojn of our duties to others? Thanks.

 
At December 21, 2007 , Blogger Wesley J. Smith said...

Lifeethics: That is just about how I see it, too. At what point does our altruism begin to cheat others and constitute a violatiojn of our duties to others? Thanks.

 

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