Risk, Reward, and Other Reasons Patients Don't Follow Medical Advice
We are in the midst of the annual influenza epidemic. Since the prevalent strain does not match those in the vaccine, we are seeing more cases than usual, but we are accustomed to seeing a spike in admissions and in deaths in young people this time of year. Despite the predictability of a seasonal epidemic, only about 40% of the population was vaccinated this fall. Contrast this laissez-faire approach to the flu with the hysteria generated by the Ebola epidemic. Clearly the fatality rate with Ebola virus infection is quite high, but the highly infectious nature of the flu means there will be vastly more flu deaths than Ebola deaths. I suppose this is an example of our ability to discount familiar risks and inflate the risks of the new. Perhaps it is akin to the way we deal with the risks of driving a car compared to the risks of flying on a commercial airline. Giving people data about relative risk does not influence either their perception or their behavior.
A number of recent articles discuss the impact of patient beliefs and their impact on clinical outcomes. Salter and associates looked at the health and psychosocial concerns of incident hemodialysis patients and their impact on the likelihood of receiving a kidney transplant. Their study of 348 adults found that 68.4% were reluctant to pursue a transplant because they felt they were doing well on dialysis. Not surprisingly, this group was less likely to receive a transplant than other patients.
Lisa Rosenbaum published an essay recently on how people feel about taking medications for heart disease. She identified several categories of barriers, including perceived risk, the difficulty visualizing benefits, the idea that taking medications meant they were “sick,” a desire to avoid dependence, and emotional intelligence. While she was considering mediation compliance, the schema resonates with the problems involved in staying on maintenance dialysis.
Most lay persons understand that dialysis is life-saving therapy, so they are often surprised to find that patients engage in both “skipping” and “shortening” behaviors, either of which increases the likelihood of complications and a shortened survival. Chan and colleagues recently studied “adherence barriers” by review of the medical record data base maintained by Fresenius Medical Care North America for a five year period. The study examined some 44 million dialysis treatments and 182,536 patients. The missed treatment rate was 1.8%, or 7.1 missed treatment days per patient year. Only 9.8% of these missed treatments were rescheduled so the patient got the intended three treatments weekly. The “skippers” were more likely to be young and non-Caucasian. The skippers were 4 times more likely to need hospitalization, twice as likely to go the emergency room, and almost 4 times more likely to require admission to the intensive care unit. They identified transportation issues, inclement weather, holidays, psychiatric illness, pain, and GI upset as the most significant single issues, but collectively, they only accounted for 0.9 missed treatment days/year. Their conclusion was “addressing systemic and patient barriers that impede access to hemodialysis care may decrease missed appointments and reduce patient morbidity.” Of course, they did not have any specific recommendations for changing the behaviors underlying the majority of skipped treatments.
Most patients actually attend their sessions faithfully, but a small minority decide early on they are not going to do this. Two recent patient encounters might illustrate some of the underlying beliefs. The first is an elderly man who had known kidney disease, but who was admitted to the hospital with a catastrophic illness. During that illness, his kidney function deteriorated and he was started on hemodialysis. When he improved to the point where he could be discharged, he was so weak and confused that he had to be placed in a skilled nursing facility for rehabilitation. I met him at this point, as his hospitalization had occurred out of town. In the 18 months or so since he came to us, he has regained strength, gone back home, and has not required admission to the hospital. All of his monthly lab work is excellent, and he has attended all of his sessions. He would seem the poster child for the value of dialysis therapy. Yet this week when I saw him at the dialysis clinic he asked me what would happen if he stopped coming. I told him I thought he would probably die in 10-14 days. He responded, “Well, I guess I will keep coming. I have been feeling so good, I thought I might not need this anymore.”
The second patient has had dialysis-requiring kidney failure for several years. He had terminated his relationship with all of the other nephrologists in town. One of my younger partners decided to take him on, “because he was so young.” He did not do any better about coming for her than he did for anybody else, even though she continued to coach him to a better behavior. After a prolonged absence he showed up in the Emergency Room with overt uremia and chest pain from his large pericardial effusion. She admitted him, and with his consent placed a pericardial catheter and did daily intensive dialysis. After five days he started talking about signing out AMA. I saw him on day 6, at which time he said, “Dialysis did not have anything to do with making me better. I want the catheter out and I am going to go home.” I took it out and he left, but he then decided to “fire” my partner. Now he has no one in this area who he will see, and therefore no dialysis clinic to go to. He is out there ready to show up in someone’s emergency room in crisis. It might be easy to dismiss this as psychiatric disorder, but I suspect he does not have a DSM diagnosis. He does clearly illustrate the aphorism that “Denial is not a river in Egypt.”
Lastly, Lin and associates did a meta-analysis of some 7218 articles and 553 articles looking at life-style interventions to reduce cardiovascular risk factors. The study was done at the behest of the U. S. Preventive Services Task Force. They conclude that intensive behavioral counseling results in consistent improvement. However, the reported differences were quite small. For BP, as an example, the median improvement was 2/1 mm Hg. For population studies, this is statistically significant, but one wonders if it is clinically significant.
Nonetheless, CMS, as the largest insurer of healthcare in the United States, is pressing on with adopting “population health” measures by use of its funding authority. The authors acknowledge several barriers. “Questions remain about how best to scale up successful models. Because of the longer time horizon needed for population-based interventions than for clinical interventions, current actuarial methods used to evaluate return on investment may underestimate potential savings.” Or maybe not. Improving population health seems like a worthwhile goal, but so far, everyone is destined to get sick and die of something. Return on investment is very much a matter of whose return and whose investment. The dialysis example suggests that those with the most to gain—the young and functional—are less likely to use current effective therapy, and we have no useful strategies to cause these people to adjust their expectations to conform to our notions of benefit. If we can’t get compliance with dialysis, how do we expect to see benefit from interventions where the payoff won’t be evident for many years?
15 January 2015
 Slater ML, Gupta N, King E, et al. Health-Related and Psychosocial Concerns About Transplantation Among Patients Initiating Dialysis. Clin J Am Soc Nephrol 2014;9:1940-48. doi:10.2215/CJN.03310414.
 Rosenbaum L. Beyond Belief—How People Feel About Taking Medications for Heart Disease. N Engl J Med 2015;322(2):183-187. doi:10.1056/NEJMms1409015.
 Chan KE, Thadhani RI, Maddux FW. Adherence Barriers to Chronic Dialysis in the United States. J Am Soc Nephrol 2014;25:2642-48. doi: 10.1681/ASN.2013111160.
 Lin JS, O’Connor E, Evans CV, Senger CA, Rowland MG, Groom HC. Behavioral Counseling to Promote a Health Lifestyle in Persons with Cardiovascular Risk Factors: A Systematic Review for the U. S. Preventive Services Task Force. Ann Intern Med 2014;161:568-578. doi: 10.7326/M14-0130.
 Kassler WJ, Tomoyasu N, Conway PH. Beyond a Traditional Payer—CMS’s Role in Improving Population Health. N Engl J Med 2015;372(2):109-111. doi. 10.1056/NEJMp1406838.
Activating Patients - The Achilles Heel of Healthcare Reform?
Studies show 25% of the population is not involved in their healthcare, but reform efforts assume wider application of evidence-based medicine is the key to better value. Perhaps it is the Achilles' Heel?
Are We Too Task Oriented?
The number of tasks doctors must complete grows exponentially. Have we become too task oriented at the expense of our patients?
More on Biases
A recent series of articles in the New England Journal of Medicine provide more insight into the issue of bias in medical decision making.
A consideration of the interactions of patient preferences, evidence-based medicine and peer review.
Putting Patients At The Center Of Healthcare
Putting patients at the center is crucial for healthcare organizations, but how can it be done?
The Limits Of The Medical Model