by Craig Klugman, Ph.D.
I have a slide that I use when teaching my students about clinical ethics: “80% of ethics consults are about communication.” The only evidence base I have for this statement is a 2005 Norwegian study with a very small subject pool. A more recent study identified communication issues in 45-51% of all cases. Thus, I was not surprised to see an ABC News piece earlier this week, “Just 5% of Terminally Ill Cancer Patients Fully Understand Prognosis, Study Finds.”
Of course that turns out not to be the whole story. In pre-intervention interviews with patients, only 5% of oncology patients could correctly answer four questions about their illness: Recognizing the disease was incurable, knowing the “advanced stage of their disease,” acknowledging a short life expectancy, and acknowledging they have a terminal illness. The study looked at how understanding of illness changed after a doctor’s visit to “discuss scan results and to evaluate disease progression.” The researchers found correlations in understanding based on education level and race. They also found having recent conversations with an oncologist led to better understanding. When analyzing the post-intervention interview responses, researchers found that 13% of patients had a perfect score. An improvement, but it still means that 87% of patients had misunderstandings about their disease.
Studies of patients in the UK receiving bad news about their cancer diagnosis show that most hear nothing after the doctor says “Cancer.” Most have emotional reactions of shock, fright and sadness that interfere with hearing the physician’s words. A study that looked at parents receiving bad news about their children’s cancer, found that nearly half of parents remembered little information they received, and nearly 20% even forgot they had an information session. In a UK breast cancer study, the use of technical language like “median survival” led to confusion with 73% misunderstanding what that term meant.
The basis for informed consent is understanding the diagnosis, options, benefits and risks. This most current study builds on a growing body of literature that shows medicine does a poor job of helping patients to understand their disease. When patients are surrounded by happy ads for cancer “cures,” when there are walks and fundraisers to “cure” cancer, and when we live in a death-minimizing society, it is no wonder that there is a lack of understanding—we have no cultural basis for it. The key point here is understanding, not hearing. Patients and their families are told the facts and the options, but they can’t understand it. The requirement for consent is understanding—not that someone threw a bunch of words at you. It does raise the question of whether most cancer patients have truly consented for their treatment, or whether they have been swayed by others to make those choices.
In public health, health promotion is an area that uses marketing to encourage people to make healthy choices. Swindell, McGuire and Halpern call this “beneficent persuasion” and say it is ethical to use such behavioral techniques to encourage patients to make decisions that are in their long-term interest. Physicians can and do strongly influence patient choices with a greater likelihood of encouraging patients to undergo treatment when it is viewed as curative versus non-curative. Combined with a low patient understanding of the illness, patients are even more vulnerable to persuasion by the physician. While these authors believe such encouragement is ethical, in the case of patients with terminal diseases, it may not be appropriate to encourage them to undergo further aggressive treatment with little to no likelihood of helping that they do not understand, but rather to help them find meaning and comfort in their final months/days.
The take home message is that we do a poor job educating patients in a way they need to learn. Most of us in the health professions were good in school and are good at finding information. Many patients are not and do not learn the way we do. An education class, another lecture on the biology of cancer, or a talk on the statistics and meaning of mean survival are unlikely to change understanding. There may be more creative ways to help patients to learn and understand about their disease—short graphic novels, videos, talking with peers, giving them quizzes about their disease before making decisions are a few examples. We cannot expect patients to think like us, but rather we need to start thinking like them.