Every visit to a doctor’s office includes the obligatory moment where the doctor asks, “Do you have any questions?” This moment frequently occurs after hearing hard-to-swallow news or incoherent doctor-speak. Not unlike your waitress coming to you right when you have the biggest mouthful of food in your entire life to ask you how your meal is, your doctor is required to make sure you don’t have any complaints and hopes to God for a simple response in return. In the case that you do indeed have a legitimate concern, your doctor will generally refer you to someone else, the nearest information pamphlet, or to a website they were told to promote. These are all ways to avoid having to communicate with you themselves. Worse, they may refer you to your nearest support group that only intends on fixing your problems with off brand makeup and 10% discounts at the hospital’s overpriced wig store.
The failure to communicate is complex, and it involves avoidance, information overload, and an issue with information reliability. Does the doctor just give me a lawyer approved, memorized speech? Am I even able to process what he or she is trying to tell me? Is the information I am receiving credible? Just because a sentence is grammatically correct does not make it true.
Doctor-patient communication is central to cancer patients’ quality of life and satisfaction (Ong et al., 2000). However, studies of cancer patients show a general dissatisfaction with their physician’s communications (see for example: Fonfa, 2007; Lee et al., 2014; Ojukwu et al., 2015; Trimborn et al., 2013). One reason for physicians avoidance of communication may be fear of lawsuits (Carrier et al., 2010). Another reason for failure to communicate is the questionable reliability of information. It is hard to say which forms of communication are trustworthy and which are not. When a doctor is unable or unwilling to provide satisfactory answers, patients sometimes resort to google’s endless supply of medical advice and cures. Is honey anti-cancer? Does the Bible hold secret healing messages? And YOU’RE IN trouble if you aren’t drinking URINE to cure your cancer!
The problem with the information superhighway is that it is hard to tell whether or not you have pulled into a library or a souvenir stand. So many of these “helpful” websites use the formats of scholarly articles, including official looking tables and charts;
Unfortunately, so many of these apparently reliable sources are just advertisements created to make a quick profit from gullible sick people. The reason this works so well is because patients with high expectations are looking for alternatives that provide a better chance of recovery than the treatments that their physicians may or may not give them. Patients are seeking out information so desperately because of the lack of doctor-approved information that they are turning to sources that promise easy, inexpensive cures. Of course, part of the reason why patients are not receiving this information before they go online is because doctors do not have enough training, information, or access to (sometimes non-existent) studies on long-term results from complementary and alternative care options. Moreover, a physician is putting their job at risk if they provide false or potentially harmful recommendations.
Beyond the worldwide web, there are almost as many pieces of advice about cancer treatment as there are people we encounter in our day to day lives. In my own experience, one of the strangest conversations I have had came from the father of one of my high school friends. A few weeks after my lymphoma diagnosis, I ran into him in front of my neighborhood’s local smoothie joint. After a very brief expression of sympathy about my diagnosis, he launched into an extensive explanation on the wonders of baking soda and its healing properties. Sure enough, after a few clicks through search engines I found just under one million references debating whether or not the baking soda cure was going to help me with more than just a bad case of acid indigestion. Along the same lines, I had been told to stick strictly to an alkaline diet, and/or to exercise frequently and eat many fruits and vegetables and juice just about everything. These all seemed like good ideas until I was unable to sit up in bed for more than ten minutes and until my doctor banned me from “anything that came out of the ground” because of my compromised immune system and the dangers of e.coli.
Another problem interfering with a patient’s understanding of their treatment is the myriad of voices offering different information all at once. Even when the information one receives is reliable, it is hard to understand and decipher what is the most important. Patients are frequently surrounded by well-meaning people all with different and sometimes conflicting advice.
This chaos of ideas can lead to poor decision making and misinformation. One health care provider told me that undergoing radiation treatment would increase my survival rate by 50% whereas another physician in the same building told me 5%. After providing me with such inconsistent information (which also clashed with Doctor Google’s extensive radiation statistical data) I was presented with the responsibility of making the hard decision myself. And even when the information is consistent, it is not always possible to make sense of it all. What does it mean that being treated with radiation is associated with a 5% higher rate of heart disease? Is that a big number? Does that factor into the 5% survival rate it so promised? What is the survival rate if I get heart disease after trying to increase my odds of survival? Will baking soda help?
It seems that some doctors “tend to overestimate their ability in communication” (Ha et al., 2010). So what can I recommend? There is no guarantee that there is a single solution to this complex problem, but a good start would be the recognition by physicians that poor communication exists and can be as harmful as poor treatment decisions. Medical institutions need to take physician’s communication skills as seriously as they take medical skills. This would include creating specialized training as well as regular assessment of physicians with feedback from patients. Furthermore, conducting more studies on complementary and alternative medicine could prevent patients from making the wrong choice and doing more harm than good.
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