Contributor: Geri Lynn Baumblatt, Executive Director of Patient Engagement
Clinicians live and breathe medicine. And I don’t want them to stop being obsessed with blood counts, better surgical approaches, and new treatments for common infections. But the flipside of this focus is the tendency to forget what it’s like not to know.
Many people live with health conditions for years
and still don’t really know what their condition is, whether it might lead to a more serious complication or other long term consequences of their condition. Even when we make an effort to educate ourselves, we really never know if there is a gap in our knowledge.
And when it’s time to make a decision about our health care, those knowledge gaps can contribute to over- and under-treatment. So how do we know if the choice we’re making is the right choice for us? As David Dunning and Errol Morris explain in The Anosognosic’s Dilemma, “the skills you need to produce a right answer are exactly the skills you need to recognize what a right answer is.”
Gaps in Knowledge
When people with diabetes start to show signs of chronic kidney disease (CKD), they’re referred to a nephrologist. But missed appointment rates are high because they often don’t understand why they’re being referred in the first place. After all, who has time to show up for what seems like a random appointment?
And while they may have been told at some point, “diabetes will affect your kidneys”, what does that actually mean to most people? Unlike saying “this condition will affect your eyes and vision”, translating “affect your kidneys” into a message that conveys a future involving kidney disease, dialysis, and transplant often isn’t communicated and definitely isn’t understood. At what point do people get a candid explanation about the trajectory of their condition? Of course if they never see, or delay seeing, a nephrologist, this can also lead to delays in a diagnosis of any kidney disease when fewer treatment options are available, leading to underutilization of care to slow the progression of the disease.
When someone has been living with a progressive condition for a while, it’s easy to assume they and their family understands their prognosis. But a study recently found that 92% of patients in the final stage of CKD, called end stage renal disease (ESRD), thought their health would remain stable or improve over the next 6 months.(1) Is this optimism, or did anyone walk them through the reality of their diagnosis?
I recently sat in a room with six people who have late stage kidney disease (nearing ESRD). All but one was convinced dietary changes were all that was needed to address their condition. Only one of the six understood that at this stage, dialysis and transplant were treatments he needed to consider. This has implications, not just for utilization of kidney transplant, but when families understand more, it may also help them consider kidney donation. And understanding the patient’s condition can also affect the utilization of hospice care later on. Today, only “a minority of dialysis patients use hospice”, even when they withdraw from dialysis.(2)
We Don’t Know What We Don’t Know
When people hear about treatments, it’s easy to make assumptions. For example, when women have uterine fibroids, especially if they hope to get pregnant, a treatment they often gravitate towards is myomectomy. Unlike a hysterectomy, with a myomectomy, the uterus stays in place and the fibroids are removed. Sounds like a home run, right?
Well, first, there’s the assumption the fibroids are the reason a woman can’t get pregnant, which may or may not be the problem, or the only problem. And like any operation, a myomectomy can create scar tissue in the area – so in this case, in the uterus itself. And new scar tissue can actually make it more difficult to get pregnant. So once these knowledge gaps are addressed for a woman who wants to get pregnant, it becomes clear that removing fibroids and leaving the uterus in place does not guarantee she will get to reach that goal. Continue Reading »