October 30, 2014 — Blog Post
Candor, Compassion and Communication: Solving Over- and Under-Treatment
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.
Fear of Knowing
It’s not a surprise that people also want to avoid hearing about treatments that sound frightening or sound like they may fail
When people have ulcerative colitis (UC), especially when symptoms flare up, their quality of life usually takes a nosedive and they feel like they’re living in the bathroom. In addition to medications, there are also a couple of surgical options for UC (ileostomy and something called J-pouch). These procedures basically get rid of their problems that UC can cause. After all, taking out the colon pretty much removes the affected organ. And once most people get these procedures, their quality of life often improves and they usually wonder why they put off surgery for so long.
But most people with UC tend to see surgery as a last resort. An ileostomy usually doesn’t sound too appealing since people end up with an ostomy bag. A J-pouch usually sounds more acceptable, because they won’t have an ostomy bag – but it’s still surgery to remove the colon. And doctors who treat this can sometimes feel like referring a patient to a surgeon translates to failing their patient.
In fact, people with UC are so averse to the idea of surgery; even people who have lived with it for years say they’re too afraid to research it on their own. In a recent survey by Dartmouth researchers of 460 people with UC, 78% said they only wanted to hear about surgery as a last resort –kind of a problem when educating people about all of their treatment options is the only way to help them make a truly informed decision and make the best use of the available treatments.
Interestingly, when some of these people were shown an online program that built competency and understanding around why people might want to consider surgery and what the surgical options actually were, they said it was actually “a relief” to finally hear about it and have it demystified. As one woman put it, “I felt relieved watching the information about the surgery options because I’ve always been so scared of that. I think relief is a good way to put it because it was like: oh, you can have a normal life afterwards.”
Yes, people are afraid of their conditions, of treatments and of the unknown. But giving people the information they need to understand the big picture is the only way to address their fears, give them full knowledge of all their options, and prepare them for the reality of how their disease will or could progress.
And providing this information with candor and compassion and in a way that everyone can understand it will help people make better use of the treatments available to them. As one man with ESRD said after learning more about his condition and treatments, providing people with a candid understanding of their health is appreciated, “Take it from someone who buries his head in the sand. It brought a lot out into the open. It was truthful, that’s what I liked about it.”
1. Manda K, et al “Do ESRD patients really want to know prognosis?” NKF 2013; Abstract 146.
2. Murray, Anne M. et al. Use of Hospice in the United States Dialysis Population. CJASN November 2006 vol. 1 no. 6 1248-1255