Thursday, August 16, 2012

Living organ donor narratives

Cristy Wright donated a kidney to her sister three years ago, and it went badly. Her sister was back in surgery within 24 hours of the operation, and within a week, the kidney--which she had affectionately nicknamed Trixie--had to be removed and thrown away. She sought support, but when she talked to her surgeon, he never acknowledged her loss or referred her for counseling. Her Living Donor Coordinator never returned her call.

Cristy feels betrayed by a medical system that should have been there to protect her. She never received adequate information about the risks of transplant surgery, even though she at one of the best hospitals in the country. She suffers from post-traumatic stress disorder. In an attempt to better inform other donors, she started the website www.livingdonors101.com (which offers useful, though IMO gratuitously negative, information about the risks of donation).

I came across Cristy's story in a recent symposium on first person narratives of living organ donation (though we've encountered each other before*) in the journal Narrative Inquiry in Bioethics (i.e. the editors compiled a number of first person narratives from living organ donors and published them all together in this issue of the journal). As I began reading about the donor's experiences, I was blown away by how negative they were. A brief litany of horrific experiences (far from exhaustive):
  • A 59-year old man donated a kidney to his 68-year-old husband, and then had to take care of him while they both were recovering from surgery. That is no mean feat, especially at their ages. At one point, they had to spend thousands of dollars out of pocket to purchase the drugs they both needed because there was some problem with their insurance.
  • A woman donated to her brother, but like Cristy's the transplant was unsuccessful and had to be removed within a week or surgery. She had been under the mistaken idea that her kidney would be able to be used for research, and was devastated to learn that it had to be thrown out.
  • A woman donated to a former lover and boss. Six months after surgery, when she went back to the transplant center to complain about her permanent nerve damage, she found out that 10% of their donors ended up with nerve damage like hers, and a few months later, they voluntarily shut down their transplant program because of "adverse events." She now suffers from chronic kidney disease and depression.
Who were these people, and how come I had never heard of them? I've talked to 9 other (living) kidney donors, and none of them had experiences anywhere near this bad. (And the living liver donation narratives were even worse, but I know far less about that...)



Worrying about selection bias--perhaps only people who had catastrophically bad experiences submitted their narratives?--I read the editor's explanation of how narratives were selected. She wrote:
When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anony- mous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3).
Amongst kidney donors, the editors chose 5 stories with "successful, positive experiences," 2 with "successful, negative experiences," 4 with "successful, mixed experiences," and 3 for whom the transplants were unsuccessful. Amongst living liver donors, there was just one person from each category.

This is not a "balanced" picture of the living organ donor experience, which is overwhelmingly positive in the vast majority of cases. Take a look at the dozens of narratives compiled by Living Donors Online regarding the living donor experience, and you'll see a picture of overwhelmingly positive experiences. No doubt these also suffer from selection bias, but LDO is actually a support forum--I would expect people who were motivated to contribute there to have disproportionately negative experiences. You'll find the same overwhelmingly positive picture of the living donor experience in the extensive medical literature.

What is the point of compiling this weirdly negative set of narratives to put in Narrative Inquiry in Bioethics? The editor of the symposium (Elisa Gordon) writes:
In this issue a four-fold goal evolved: (1) To improve the informed consent process for prospective living organ donors in the future by helping them to better comprehend the full range of risks of donation and the impact it can have on their lives. (2) To improve transplant clinicians’ evaluation of potential donors. (3) To improve compassionate care of potential donors and after care for donors. (4) To illustrate the need for careful follow up with living donors to watch for future problems related to the donation.
I find these goals somewhat perplexing: to the extent that the goal is improving patient care, it would have been better to focus 100% on ways in which donors could have been treated better, rather than this mishmash of positive and negative experiences. I also think that these goals would imply a different title for the symposium than "Narrative Symposium: Living Organ Donation."

But part of me doubts that the editor's statement about those goals is totally forthcoming. Indeed, if the goal is merely to improve care for donors, wouldn't the results of a (larger n) survey of living donors about their quality of care and room for improvement suffice? Why the recourse to these individual narratives? I think the real rationale for collecting these donor narratives comes through when Gordon (the editor of the symposium) writes:
[L]ess is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.
This is what frustrated me most about the series, and the reason I've bothered to write about it. A ton is known about how donors approach organ donation from their point of view, but it's known to the donors and the transplant staff who talk to them, not to academics. It seems much more likely to me that doctors, nurses, and other staff involved in the transplant process will learn about donors' answers to these questions by talking to them than by reading this (somewhat random) bioethics journal - and that's probably a good thing given the unrepresentative accounts included in the series.

I'm being a little unfair - the point of compiling a symposium like this one is to make the donor narratives academically cognizable, to allow them to be cited authoritatively in future scholarship. Plus, precisely because these stories are such rare and unhappy ones, it might be good for transplant staff to read them, to get a sense of what negative outcomes they may not have personally been exposed to might look like.

But once again, if that's the goal, the symposium could have focused more squarely on negative outcomes, and not made the implicit claim to representativeness. When Gordon picks which narratives to include so that they can be cited, she's choosing whose stories are told. She included some positive narratives, but picking "representative" narratives without regard to their frequency is like a symposium on "political engagement in America" that includes one Democrat, one Republican, one Libertarian, one Green, one Constitution[alist?], one Communist, and one Socialist, without noting that some of those parties are larger than others. Reading that symposium, you'd end up with a grossly inaccurate idea about what it's like to be politically involved in America, just as this symposium conveys a biased view of what it's like to be an organ donor.

There's nothing wrong with writing a profile about minor party supporters in the U.S.--profiling members of the Green and Libertarian and Communist parties might be quite interesting--and there's nothing wrong with discussing the negative experiences that some organ donors have. We need to talk about those experiences. But it's unfair and inaccurate to portray those experiences as representative ones.

Some other stray observations from the narratives:
  • A lot of the things that look bad about living organ donation are probably problems with the health care system in general, e.g. the terrible follow-up care that a lot of the people seem to have experienced. The medical system was also generally anonymous and cold, with some people never actually meeting their surgeons or having a single point of contact in their care. Atul Gawande mentioned that last point as being a common patient complaint in his most recent New Yorker piece.
  • One of the commenters, Paul Root Wolpe, wrote something that I thought was right:
    Biographical narratives are always constructed in retrospect. We gather our impressions of our experience and fit them into frames that allow us to weave them into the ongoing story of our lives. When the process of living donation goes seamlessly, the imagined outcome of the story follows the intended script: the organ is donated, the donor and recipient recover, and life goes on. Minor complications along the way are part of the process, but do not disrupt. Organ donation becomes an episode rather than a theme of one’s life.
    Of course, when things go wrong, that carefully anticipated story line must be rewritten. It is not surprising that so many of the narratives in this volume are stories of failure or complication. Successful donations may not seem to have the emotional valence to compel the donor to feel a need to share their story.
    Part of the reason that these narratives frustrated me was that I thought they didn't adequately convey the fact that "things go wrong" quite rarely. The negative experiences seem so much more vivid--because they may come to define the donors in a way that positive stories rarely do--but I think it's a mistake to let them dominate the story.
  • When I was first reading these narratives, I tweeted, "I've never been so conscious of the power dynamics of research - it feels transgressive to read the academic narratives about organ donation." That was a stupid thing to tweet, but after re-reading the narratives and the editors' comments, I think what I meant is that it felt odd to read things that were being written about me but that almost certainly wouldn't be said to me.
*I first heard about Cristy when friends and family members complained about the tenor of the comments on an op-ed that I wrote a couple days before I donated my spare kidney last year; in one of my favorite comments, she accused me of "regurgitating transplant industry propaganda." She popped up of my radar again recently in a thread on Jeff Kauffman's blog; apparently she has a Google Alert and comments on blog posts about living organ donation to inform people about the risks.

2 comments:

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  2. I suppose I should be flattered that my story and actions take such a prominent role in this post.

    While I found NIB's attempt to address living donation to be flawed, I believe their overall goal was to give voice to the living donor experiences that are often overlooked, quashed, or ignored. Even though 20% of living kidney donors have physical complications (per LODN), as well as 40% of living liver donors (per A2ALL)*, the public face of living donation is always that of the happy LD who "would do it again" and "doesn't regret a thing". To use your analogy, it's equivalent to US presidential debates only including Democrats and Republicans, but none of the third/independent parties. It's a dishonest representation of what it means to be a living donor (and more LDs have issues than % of folks who vote for the third parties).

    Living Donors Online (LDO) is a helpful tool, but like all forums, its group norms are established by its more vocal members. A couple of individuals do a nice job of educating and supporting folks who are confused or in pain, but they are outnumbered by those who demonstrate a lack of awareness or knowledge of a great many things.

    For example: a woman was losing weight to donate a liver lobe to her uncle. Before she reached her target, the uncle died. When she sought solace on LDO, a regular contributor, whose title denotes authority/respect in the real world, told her to donate her kidney to stranger to make herself feel better. As horrifying as that is (and I think that even though you and I have different opinions about many of these issues, we can both agree that response was incredibly inappropriate), this person couldn't see what he'd said/done wrong even after it was pointed out.

    Not that there was a big pile-on. Michael's hands-off approach to the forum's discussions has resulted in a reticence to engage in confrontation due to a lack of leadership direction. My point, I suppose, is that LDO is not the living donor support utopia your above essay purports it is/should be/could be. Like everything else, it is helpful to some, meaningless to more, and detrimental to others. As you might expect, I get the emails from the third group.



    You're right that transplant center staff see a lot of prospective living donors (at least those employed in high volume centers), and as you opine, they think they know "a ton" about LDs as a result. But how much can one learn during a 45 minute conversation when one must complete a checklist of tasks, impart information and obtain answers to questions? The idea that the transplant staff are the experts in the living donor experience (rather than the living donors themselves) is why our current system is skewed so heavily toward the recipient and so easily disposes of living donors once the organ is harvested**. Consider why publishing industry has ignored the living donor memoir - they think they already know the story, so why bother?

    Which is why that feeling you described at the end of your post could be exactly what the editors of NIB were going for when they chose the narratives. Perhaps they chose to do the issue because they knew something was amiss in the 'standard' living donor story and they wanted to add to the discussion. Perhaps this was an attempt to shake the transplant industry out of their complacency and encourage them to do better. Regardless, I'm sure they've endured a lot of criticism. It's inevitable when one challenges the status quo.




    *which is - well - not rare at all, research results wise. Approximately 30% of all LDs suffer from depression, anxiety or some other psychosocial issue as well.

    **As I'm sure you're aware, despite a decade-long, federal mandate, we have no idea if 35% of 2010's LKDs are alive or dead a mere one year after donation. Conversely, recipients are followed for 10 years at a very reliable and valid rate.

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