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Ethical Considerations Living Donor Protections Living Donor Research

Bioethics and Living Donation

I just finished reading this article from Stanford’s bioethics folks, and I wanted to share some tidbits.

In emotionally wrought circumstances when there may be conflicts between the desires of the patient, the patient’s family and the doctors and nurses providing care, the ethics team works to provide thoughtful, respectful and evidence-based guidance. The team approach is a stark contrast to the early days of medicine when doctors alone made the decisions, often without consulting the patient.

CMS Final Rule 2007 requires transplant centers to provide each prospective living donor with an Indepdendent Donor Advocate. There has been a major struggle in some transplant programs about the role and power of this IDA. Specifically, transplant surgeons have insisted while the IDA can provide ‘input’ into the discussion, the transplant surgeon will be the biggest, final and last word on whether a living donor transplant will take place.

(If one reads between the lines of certain hospital’s descriptions of their living donor programs, policies and processes, one can see the evidence of this power struggle)

Why haven’t bioethicists spoken about this?

[bioethicists] also play roles in educating the public, protecting the rights of patients and giving a voice to vulnerable populations.

The entire transplant industry revolves around the needs of the recipient. The living donor is collatoral, a means to the end goal of obtaining a transplant for the recipient. Yet bioethicists routinely talk about the ‘recipient-donor pair’ as if they’re conjoined twins. If living donors, motivated either by their intense emotional connection to their recipient or convinced by the erroneous perception that living donation is ‘safe’, aren’t a vulnerable population, then who is?

Instead, Lainie Ross pontificates all over the media that the proposed kidney allocation policy could mean less living donors. Wouldn’t common sense dictate that fewer healthy people putting themselves at lifetime, untold risk is a good thing? Why aren’t bioethicists writing essays about the lack of living donor long-term data, or doing interviews about how living donors are being stuck with bills to treat their complications?

For instance, bioethics places heavy emphasis on individual rights, including the ability of informed individuals to freely make decisions for themselves. That focus, says [Renee] Fox, doesn’t always give enough weight to other crucial values, such as the connection between individuals and others, kinship, community and the common good.

This is my favorite:

1. The Hippocratic Oath says “do no harm” (oops)
2. Ethicists say “Nah, it’s okay as long as the benefit to the recipient outweighs the risk to the living donor” (First off – wha? Second – living donation is the ONLY medical procedure where, apparently, this sort of logic makes sense)
3. Surgeons have publicly said “If a person is willing, who am I do tell then they can’t donate?” Yeah, the autonomy argument the above quote refers to. (The answer: refer to point 1)
4. Yet transplant centers regularly take uninsured living donors, insurance companies refuse to pay for complications, etc. Exactly how in the hell is that good for the individual, community or common good??

When I first delved into the muckery that is the transplant industry, I was pleasantly surprised to find a discipline that actually catered to such matters. But over the course of time, I’ve found myself annoyed at the field more often than not. This article hits on the biggie, which is the ‘think tank’ perspective that causes bioethics discussions to drown in theory, forgetting that real people are behind all these quandries. My second pet peeve, which falls under that ‘American’ criticism, is the overwhelming focus on science and medicine as evidentiary while neglecting psychological, sociological and anthropological variables and consequences. People are the greater than the sum of their parts, which bioethics of all things is supposed to recognize, yet in practice, they don’t.

But hey, what do I know? I don’t right letters behind my name to have a valid opinion.

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