Decisions, decisions.
We make hundreds of decisions daily-most times without realizing we're making them.
"What color socks go with these shoes?"
"Should I step on the car's gas pedal to make the next traffic light before it turns red?"
"If I wear black eyeliner, will it make me look too Goth?"
Those of us who care for people with cancer can sometimes forget how difficult it is to make the types of major decisions we ask of our patients regarding their health. And we may be making assumptions about how those decisions are made.
In their book Your Medical Mind: How to Decide What Is Right for You, Hartzband (an endocrinologist) and Groopman (an oncologist), who also happen to be married to each other, explore how patients make medical decisions, focusing on individual stories of people deliberating over cholesterol drugs, surgery vs. radiation therapy vs. observation for prostate cancer, the best treatment for breast cancer, and whether or not to accept aggressive measures at the end of life.
Through these profiles, we recognize aspects of the patients we meet every day, and of ourselves. There are those who are naturalists, who avoid therapies or medical intervention, believing the body can cure itself, and those who are more technology- and science-driven, who trust the latest discoveries to allow them to live better and longer than their parents or grandparents. Some patients are identified as minimalists, wanting to do as little as possible, while others are maximalists, who aggressively pursue treatment immediately.
Using these constructs, we can also understand how people interpret statistics differently. In oncology, we are fortunate in often having evidence in the form of studies to support the treatments we recommend. For example, a certain type of chemotherapy may have been shown to reduce the chance a cancer will recur by 50 percent. Wow. Sounds like a lot. Sign me up.
But what if, instead of presenting the statistics this way, I told a patient that the chemotherapy in question would lower cancer relapse from 0.5 percent to 0.25 percent, and that the chemotherapy carried with it a 0.5 percent chance of serious liver damage, 10 percent chance of grade 3 or 4 myalgias, and isolated reports of cardiomyopathy? A maximalist might focus on the first statistic to justify pursuing chemotherapy, while a minimalist would use the second sets of statistics to avoid the intervention.
Statistics can also be overwhelming if we attempt to incorporate too many factors into our decision. Hartzband and Groopman cite one analysis in the decision about how to manage organ-confined prostate cancer in which, incorporating events including prostate cancer progression, risks of impotency, incontinence, development of a blood clot, and other complications from surgery would yield 2000 potential combinations!
So often, our patients rely on anecdote-they identify a person similar to themselves with a similar cancer and what is perceived as a good outcome and choose the same course as that person. They may also ignore the statistics we present to them entirely, or may not understand them.
That statistics may be overwhelming to people making major medical decisions has been clear to me for some time. I became interested in this topic coming out of my fellowship. At that time, we conducted a study in older adults with acute myeloid leukemia who were undergoing remission induction chemotherapy. As part of the study, I went into patients' hospital rooms, presented data on their chances of being cured from chemotherapy (I quoted less than 10 percent, as did 90 percent of their leukemia doctors) and chances of dying from the chemotherapy (I told them as high as 25 percent), and then left the room to get a survey. When I returned, I asked them their chances of being cured and of dying.
The results?
Almost three-quarters of patients told me their chances of being cured of their leukemia was greater than 50 percent, and half reported their chance of dying as less than 10 percent-not 10 minutes after I had presented to these same patients entirely different numbers!
Why the disconnect? Did I do a poor job in communicating these important statistics to the patients? Did they just not understand the statistics? Or did they choose to ignore them, because they had made up their minds already to receive the chemotherapy (maximalists, technology-driven, had heard good outcomes from a friend), so in their minds, they were going to have a better outcome than what I forecasted?
The end of the book, fittingly, focuses on end-of-life decisions-a topic that is unfortunately germane to a lot of our oncology practices. In 1983, a Presidential commission released a report urging health care professionals to discuss advanced directives with their patients, and encouraging patients to develop a living will. As a result of this heightened public awareness, we have become better about discussing advanced directives, patients have become better about establishing their wishes, and hospitals ask questions about aggressiveness of care upon admission.
In what is the best written portion of the book, Hartzband and Groopman cite subsequent studies that show, despite the excellent intentions of these new approaches to end-of-life care, a person's wishes about treatment fluctuates over the course of an illness.
In one study, approximately half of patients with serious medical conditions at the end of life were inconsistent in their directives. The authors then illustrate this fact with stories that are quite touching, including one about a woman with biliary cancer who discovers, as her medical condition deteriorates, that she enjoys the simple pleasure of eating a blueberry muffin baked by her daughter, and decides to fight on, despite her advanced directive to the contrary. Recently on our own leukemia service, a man in a similar situation, with what appeared to be a poor quality of life, delighted in the daily chocolate bar brought to him by his wife. He, too, decided to ignore his own previously expressed wishes about the aggressiveness of his care.
As caregivers, we can serve our patients best by providing education about their conditions and treatment options, trying to learn the types of decision-makers any given person sitting before us represents, and attempting to understand what motivates them. But mostly, by letting our patients make their own decisions.
PENGUIN PRES, 2011, ISBN 014312224X
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