Nearly 2 years ago, as my desire to move from whine to action with regard to how we care for patients with end-stage kidney disease grew, I joined the American Society of Nephrology’s (ASN) Dialysis Advisory Group (DAG). This was very much a calculated action. The ASN is the world’s largest professional organization dedicated to the study of kidney disease and one of the responsibilities of its DAG is to “facilitate dialogue concerning issues of interest to the advisory group's constituents, develop recommendations about these issues for the ASN Council to consider, and publish position papers in ASN's periodicals.” I saw joining this group as an opportunity for me to launch myself into the circle of experts and serious thinkers in the area. Soon after joining, I suggested we write a paper about the somewhat novel concept of “palliative dialysis.” The paper would say that when people who are on dialysis are probably going to die within the year, we dialysis providers should stop our usual tendency to obsess over numbers and start prioritizing those patients’ comfort. So common sense one would think it hardly warranted writing it down, but in reality we poke and prod and fiddle with machine settings long after it becomes apparent that death will come no matter what we do.
fruit tree
I saw this paper as the low hanging fruit. Something easy that we as a profession could deal with, cross off the list, and feel good about ourselves and what we do. Then we could pull out the ladder to get at some of the stuff on those top branches. To the stuff that I really wanted to say—like, sometimes, we should have the courage to not start dialysis in the first place. Yes, better to start with something easy.
To my pleasant surprise, the group was willing to proceed with my paper idea. So I outlined my vision for the paper. It would talk about why we needed “palliative dialysis”, what it meant, and what was getting in the way of it. The editors of Clinical Journal of the ASN (CJASN) was interested in publishing such a paper and issued a formal invitation. DAG members volunteered to join the writing group and I was allowed to invite 2 or 3 experts in the field who were not already DAG members. One conference call to discuss the vision and everyone signed up to write sections. We set a deadline months later for everyone to get their sections to me and I would distill the 12,000 or so words they collectively provided into a cogent document of roughly 3,000 words. Easy peasy.
But just hours before our deadline to submit the paper to CJASN, one of the writing group members sounded the alarm. “Wait!” he shouted by email. We can’t call this “palliative dialysis” as if dialysis only relieves the symptoms of end-stage kidney disease. Dialysis itself can cause a lot of discomfort too, he argued.
He was right, I realized after taking a few hours to calm myself. So we regrouped, I rewrote, and we landed on calling our concept “a palliative approach to dialysis.” Yes, this was more accurate. This would sail through peer review, the several month-long process that all papers must go through before being published in any reputable scientific journal. Or so I thought. Three people with expertise in the field would read our work and anonymously comment on it. What was right about it. What was wrong with it. If it was worthy of being published. Fresh eyes usually find something that can be improved upon. In my experience, reviewers will each have at least 2 or 3 comments, but sometimes 7 or 8. So I expected the full review to come back with somewhere in the range of 12-24 individual comments.
We got 46. Maybe 2 of them complimentary.
Apparently the paper wasn’t as cogent as I thought. The first reviewer even called us “disingenuous.” As if a group of thoughtful people would get together and write a deceptive paper. As if we were suggesting that we start running through dialysis units around the country, tripping over power cords, never to plug them in again—but trying to cover that up with pretty words.
Thankfully, the other 2 reviewers were clearly trying to be helpful, but it was also clear that the paper would need to be about 80% re-written. I needed a month to calm myself this time before I could bring myself to rewrite the paper and respond to each and every comment.
We got 22 comments the second time around. This time the first reviewer urged us to “just be honest.”
Unfortunately, when responding to reviewer comments, one cannot say things like, “Say that to my face, you anonymous asshole,” though one may feel like doing so. Instead, responses are along the lines of “Thank you for your thoughtful review,” and “We appreciate your suggestion.” It’s like slurping on a shit shake.
But three versions of the paper, fifteen months, and more than 80 reviewer comments later, “A Palliative Approach to Dialysis Care: A Patient-Centered Transition to the End of Life,” has been published. Wonder what reaching for the next branch up will require.