Integrating Advance Care Planning Into Usual Dialysis Practice
There is a critical need to identify and address advance care planning (ACP) barriers unique to nephrology. The goals of the project proposed in this application are to do just that. I will build on my funded National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) R21, which will chronicle the experiences of older patients under the care of nephrologists at three UCSF hospital campuses over the course of the first year of initiating dialysis, and with the support of the Sojourns Scholar award 1) conduct a qualitative study of UCSF nephrologists and other dialysis staff to describe the current practice of and barriers to ACP, 2) convening a focus group of nephrologists to devise a targeted ACP intervention that can be integrated into usual care, and 3) pilot and evaluate the feasibility and acceptability of the ACP intervention. Findings from the pilot study will be disseminated and used to design a randomized controlled trial testing the effect of the intervention on end-of-life care.
“It was an experience I had soon after I joined the nephrology faculty in 2009 at San Francisco General Hospital (SFGH) that started me on the palliative care path. I met eighty-three-year-old Ming Lee in the pre-dialysis clinic where I served as the new attending nephrologist when my colleague was unavailable. She was scheduled to see a vascular surgeon the following week to talk about creating a fistula for hemodialysis, but she was ambivalent about going to that appointment and about dialysis in general. I was ambivalent too. The plan for Mrs. Lee felt wrong. Given her age and overall health status, I didn’t think dialysis was the right thing to do. But a few months later, I walked into our renal center administrative office. I chatted with office staff. Like any other day. “Do you remember the patient Ming Lee?” asked the office administrator, asked “Yes, of course. How is she doing?” I asked brightly. “She jumped off the roof of her five-story apartment building.” She. Jumped. Off. The. Roof. The words hit me in the chest so hard they took my breath away. Maybe she jumped off that roof because of something completely unrelated to dialysis. But maybe it was all about dialysis and she saw no other way out. And I didn’t have the training, the words, the courage to show her there was. I tried not to cry. I never wanted to feel like that again. I wanted to learn how to have the tough conversations and how to manage patients without dialysis. I started reading the literature. I wrote about the experience with Mrs. Lee in my application to win one of the sixty-four spots in Harvard’s 2013-2014 Palliative Care Education and Practice (PCEP) program. I found the experience transformative, but still wanting for more information on palliative care specific to patients with end-stage kidney disease. There were so many unanswered questions. So much work to be done.”