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Live Kidney Donation and the Ethic of Care

Yep, I stole the title from the article itself.

Much of this article could be confusing to those who don’t know the vocabulary of ethics, medical ethics and the like. I’ll spare my wandering readers the authors’ process and skip right to their conclusions and recommendations.

The focus in organ transplants needs to shift perspective from solving the orgsn scarity problem to caring for both donor and recipient.

“The societal problem of how to get more organs needs to be clearly separated from the process and procedures of individual organ transplants. Likewise, patients should not be pressured to find donors. the medical profession cannot compromise its primary responsibility ‘to do no harm’.”

Someone recently disagreed with my stance that it is impossible to simultaneously increase organ transplants while protecting the prospective/current living donor. My reasoning is that in every case, a choice will have to be made: obtain a transplant for the recipient, or tend to the best interests of the living donor. The authors, while utilzing different phrasing, agree with me. By ‘educating’ would-be recipients on how to ‘have conversations’ with their families and friends about living donation, the medical profession is choosing to neglect their responsibilities toward healthy prospective living donors in exchange for procuring more donor organs for would-be recipients. And it’s not even as complicated as that. By simply emphasizing the ‘benefit’ of living donor organs to would-be recipients while conveniently omitting living donation’s risks, the medical profession is clearly siding with the recipient to the detriment of the living donor.

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The organ donation process, which is now streamlined and oriented toward medical compatibility and suitability, needs to be more attentive to the personal dynamics between donor and recipient.

“The common approach to donation is to screen for medically appropriate donors first and only later, if at all, worry about the psychological dimensions of giving. While that may be cost effective, it enhances the possibility of manipulation. What starts out as an investigation of compatibility inexorably works its way to expected donation, making withdrawl more difficult. The interpersonal dynamics need to be dealt with at the onset.”

A recent study by U of Minnesota* stated that 40% of their living donors felt at least some pressure to donate, and the amount/propensity of that pressure correlated with a donor’s relation to their recipient. Hilariously (to me), the authors called this the ‘most surprising’ result of their study. Not so shocking to those of us who actually spend time listening to living donors.

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While the traditional emphasis on informed consent should continue, special care needs to be taken with respect to the natural response to give a kidney to a loved one. Not just the cognitive but also the emotive dimension of informed consent becomes particularly important.

Fellner, in 1968 and subsequent studies, found that living donors make their decision to donate impulsively and emotionally, and before gathering all pertinent information. Yet here we are in 2011 and no one in the transplant industry has acted to correct this proclivity.

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Potential donors need to balance their responsibilities not just to the recipient but also to others in their circle of care and to their own health. In this life-altering decision, the potential donor’s generosity needs to be tempered with an understanding of the current and future risks.

Other independent living donor activists/advocates and I have discussed this issue often. A living donor is not an island unto him/herself. Many have spouses, children, friends, family, co-workers, etc. and obligations thereto. Yet transplant center personnel, even the person assigned to conduct the psychological evaluation, rarely inquire into such matters. Imagine how different the Ryan Arnold** situation may have turned out if someone had said, “Ryan, you have a wife and small children. Have you considered who will care for them if something happens to you?”

The donor advocate can help to sort through these various issues.

CMS (medicare) Final Rule 2007 requires every living donor to have an ‘independent donor advocate’ yet as of 2011, transplant centers are still struggling with this issue. The entire transplant system has been engineered around the needs of the recipient, they simply don’t know how to adapt to considering the living donor in the equation too.

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Recipients cannot allow their debiitating condition to overwhelm them into forgetting that donation is a gift and not a right. The preferred course of action would be for the recipient not to ask but for the donor to offer, diminishing the chance for manipulation. Public appeals by patients needing kidneys can easily exploit naive, vulnerable people.

Considering I spent my entire morning reading documents and studies related to public solicitation of organs, I want to offer a hearty “amen!” to the above. That being said, I recognize that this entitlement does not necessarily originate with the recipient (although sometimes it does). OPTN had adhoc committee meetings in 2003 in regards to public solicitation but in the end, decided not to actually, you know, DO anything about it. Meanwhile, the entire transplant industry emphasizes the benefit of living donor organs and subtly, or not, encourages would-be recipients to find one.

There are ways of increasing deceased organ donation, but none of them will produce immediate results. Living donors, however, are a medical supply with legs***. Their kidneys have longer survival times and generally function at a higher rate. Their procedures can be scheduled around a surgeon’s vacation or tee time, and best of all, they generate a larger profit for the transplant center.

Which brings me back to my original point – it is utterly impossible to simultaneously protect living donors while obtaining organs for recipients. One will always be prioritized over the other. And unless something drastically changes, that will always be the recipient.

*Valapour 2010
**living liver donor who died in Colorado in August 2010.
***paraphrased from vampire Spike’s line in a ‘buffy the vampire slayer’ episode where he referred to humans as ‘Happy Meals with legs’.

Kane F, Clement G, & Kane M (2008). Live kidney donations and the ethic of care. The Journal of medical humanities, 29 (3), 173-88 PMID: 18642067

5 replies on “Live Kidney Donation and the Ethic of Care”

Thank you so much for this blog and for the Living Donor 101 site. It is a fantastic resource and a relief to get a more balanced picture of what it means to be a living organ donor.

I have started getting subtle pressure from a friend whose son has liver disease … while he is doing well for now he will, at some point, require a transplant. The last time we saw her she chatted up the live donor liver transplant process as "easy … the liver grows back in two months!" and hinted that either her husband or I might make a liver donation (we both have a compatible blood type). I hadn't yet offered to be a donor, and I came away from that evening stunned that her son's health issue was now suddenly my health issue (I had no idea that LDLT was even possible), and angry that she could be so cavalier with my body and my health.

At first my husband didn't understand my reaction … like most people, he viewed being a donor as something that you just do, even if you don't really like it. I felt guilty and selfish for not wanting to do it. Since then I have done a lot of reading and thinking about the topic, and I feel more comfortable with my decision, which is a definite no while my children are young, and probably still no even when they are grown.

I think it is irresponsible of the medical profession to present this as a safe and acceptable solution when the long-term risks (and, to some extent, short-term risks) are still unknown, and it is unfair of friends and acquaintances to pressure everyone in their circle to risk their health and possibly their life.

I'm glad you've come to terms with your decision. It is not at all selfish to prioritize the responsibility you have toward your own children, or even yourself. After all, isn't that what your friend is doing in asking for your sacrifice?

I agree that encouraging solicitation is less than ethical, especially when pamphlets and conversations take careful aim to avoid the real risk or consequences to the living donor. Kudos for seeing through the obfuscation.

I have to follow up on my previous post, which probably sounds selfish and uncaring. I do care and, like most people, I don't think I could watch someone die if I thought I could do something to help – which is probably why I have been struggling with this decision for a while now. And who knows – maybe if it came to the point where I really was his last hope I would find it in myself to go through with the liver donation.

My point is this: most people have an innate desire to help – we couldn't let someone die if we thought we could do something to prevent it. But at what cost? Is it really fair of the medical community to encourage people rush in to try to help when the full risk is unknown? Immediate family, yes – I would certainly do it for my own children even if the risks were a lot higher. But to send patients out to recruit donors with the message that the procedure is "safe" and "easy" is just plain wrong. It is misleading, and takes advantage of people's goodwill.

Part of the value of this site is that it makes "no" an acceptable part of the conversation. At some point we need to be able to say "you are asking too much of me" without feeling guilty.

Plenty has been written about parents donating to children; however, they only make up approximately 10% of all living donor transplants (Davis 2010). As the authors above state, the emphasis has always been on increasing donor organs, forgetting that the living donor is a PERSON too, and they deserve far better than to be treated like medical supply.

It is this philosophy of 'more transplants better' that causes transplant professionals to sugarcoat living donation to the would-be recipient. They are well aware that if they said, "live liver donors have a near 40% complication rate", many wouldn't accept a living donor liver. Since a surgeon's goal is to go to surgery, and a transplant surgeon's goal is to obtain a transplant for their patient, this is not an acceptable end result (from their perspective)

It's not just all about the data; it's about the transplant industry's responsibility to care for living donor once s/he enters the system. Families dynamics are complicated; all relationships are to some extent. The transplant industry owes living donors more than the usual "Being paid for your organ is illegal" and "You're here of your own free will, right?". They are exposing an otherwise healthy person to a needless procedure and leaving them physically, if not psychologically, compromised. They are ethically responsible for preparing the prospective LD for this journey and treating any negative repercussions thereof. They don't.

It's unfortunate some part of you fears appearing selfish and uncaring for protecting yourself and your family. You're not. You are not the cause of your friend's son's health problems. You're simply making the best decision for you.

[…] Once again, there is an inherent conflict between increasing ‘all’ organs for transplantation and caring for living donors. Too often a choice will have to be made between obtaining a transplant for a recipient, and protecting a prospective living donor from harm. Historically NKF has always come down on the side of the recipient. See more thoughts on this here. […]

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