For family game night, my daughter’s favorite game is Jenga. As the tower destabilizes, she nervously anticipates whether the next poke of a block will destabilize the tower and elicit screams of “Jenga!” when it falls.
Sometimes, as a nephrologist caring for persons with advanced kidney disease, I feel like my daughter does during a round of Jenga. I’m just watching on the sidelines, waiting to see which move will destabilize the patient.
A few years ago, the daughter of a 94-year-old patient called me. Her mom had been admitted to a hospital after falling and breaking her hip. The ER doctors also said her mom would need dialysis because her kidneys were failing. When admitted to the ER, her eGFR (estimate of kidney function) was at 7 — normal is about 120. When the kidney function reaches less than 10, many doctors suggest dialysis. What those ER doctors were unaware of was that her kidney function had been between 8 and 10 for more than a year. I explained to them that the patient had advanced kidney disease for several years. Through several phone conversations, we avoided many unnecessary steps during her hospitalization that may have made her yet another patient who crashes into dialysis.
When a patient has advanced kidney disease, the ideal time to start dialysis is one of the hardest decisions for both the patient and the nephrologist. In fact, many studies examine whether starting earlier, when the patient has better kidney function, is preferable to waiting until the person has symptoms or severe abnormalities in blood tests. A large randomized trial that compared persons who started dialysis at higher levels of kidney function versus later showed no differences in rates of clinical outcomes between the groups. While this study had some limitations, it’s the general consensus that the decision to start dialysis should be a shared decision between providers and patients, and should be informed by the clinical scenario, symptoms, and laboratory tests.
What the guidelines don’t emphasize is that such decisions assume a “steady state,” which means the patient is likely to slowly get worse until the “right time” arrives. In my clinical practice, I’ve found that, while this may be true for some, for many patients it’s like a game of Jenga. Every interaction with the medical system becomes the potential “poke” that destabilizes the tower. Intermittent illnesses, accidents, and other unexpected factors can tip someone over to needing dialysis.
However, there are also system factors that can result in that tiny poke that causes the tower to come tumbling down. These factors include the confusing and ever-expanding list of medications prescribed by different providers, the fragmentation of care with patients seeing various providers at different medical centers, routine procedures and contrast studies, the lack of patient empowerment and knowledge about their disease, and even the lack of alignment of economic incentives to delay the initiation of dialysis.
Persons with advanced kidney disease should be empowered to understand how each new medication, life event, dietary change, or hospitalization can influence their disease progression. Care should be easily organized and accessible, so that any provider can readily understand where patients are in the course of their kidney disease. There should be easily searchable alerts for new medications, even that seemingly “innocuous” naproxen for shoulder pain. Most importantly, care should be multidisciplinary. Patients should have an advanced kidney disease “watchdog” and a community for support. An integrated kidney care model can serve as that hand that stabilizes the tower while life and the system “poke around” at the Jenga pieces.
My colleagues in nephrology have many stories to tell about being the watchdog for their patients, defending them with passion and dedication. But, we cannot do it alone. We need an infrastructure of care that can support the patient along their entire journey, from their home life to their interactions with the medical system.
Resources and technology exist today to support an integrated, multidisciplinary approach that improves and prolongs the quality of life for people with kidney disease. We can, and should, work with payers and health systems to provide early detection, risk stratification, and hands-on multidisciplinary care. Further, by educating patients and caregivers about their options — from home therapies for renal replacement therapy to conservative care — we can help them to make informed, proactive decisions, rather than reacting as that one poke threatens to bring their world crashing down. In doing so, perhaps we can even increase pre-emptive transplant or ensure an orderly transition to dialysis outside of the hospital.
It’s time for forward-thinking clinicians and kidney advocates to change this system. Together we can help keep the tower standing, rather than accelerating the crash.