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.
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.
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.
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.
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.
**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