Patients’ and doctors’ personal experiences influence how they decide on what treatment to undergo or prescribe. A book by Harvard Medical School physicians investigates and explains.
By JUDY SIEGEL-ITZKOVICHA doctor stands with stethoscope in this undated handout photo.(photo credit: REUTERS)
One would think that with the cornucopia of medical information and opinion on the Internet, in the media and in public discussion, it would become easier to choose a course of action when faced with a significant healthcare decision. In fact, this plethora of data – combined with friends’ proffered advice based on their personal experience – makes the patient even more confused because information that is available often conflicts with other available information. Even “second opinions” from independent doctors can cause patients to be bewildered.Your Medical Mind: How To Decide What Is Right For You, a thick book by a married couple – Dr. Jerome Groopman and Dr. Pamela Hartzband – from the prestigious Harvard Medical School, tries to make sense of differing medical opinions.The original volume, published by the Penguin Press in 2011, did not reach my desk then, so I was introduced to the reference work only now when the new the Hebrew-language edition was released as Haintellientsia Harefuit Shelcha: Aich Lehahlit Mahu Hatipul Harefui Hanachon, published by Matar. Of the 304 pages, nearly 100 are notes, bibliography and an index, showing how carefully it was researched.Groopman holds the Dina and Raphael Recanati Chair of Medicine at Harvard Medical School and is chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston. He is also an oncologist who guides his patients through life-or-death decisions.He has published over 150 scientific articles and written the New York Times’ bestseller The Anatomy of Hope, as well as other popular medical volumes, including Second Opinions and The Measure of Our Days. He writes for The New Yorker, The New Republic, The Washington Post and The New York Times.Hartzband is a prominent endocrinologist and educator at the medical school who helps patients make vital decisions about their long-term health. A faculty member at Beth Israel Deaconess Medical Center’s endocrinology, she specializes in disorders of the thyroid and adrenal glands and writes a bimonthly column with her husband for ACP Internist.The Hebrew translation is apparently faithful to the original, but it does not seem to add information relevant to Israel’s health system, which is significantly different from that in the US. A reference to Israeli Nobel Prize laureates in economics – Prof.Daniel Kahneman and the late Prof. Amos Tversky – is the only mention of Israelis. Comments on endless ads for prescription drugs on US television and in the print media are left in, even though advertisements on such products are prohibited in the popular media here. Such commercial influences – the way the pharmaceutical companies present positive data and even persuade doctors to believe in their medication – can have very strong influences on healthcare.EVEN THOUGH medicine has never been so quantified, based on factors that can be objectively measured and compared, much health information is processed in a subjective way. The patients’ and the physicians’ personal backgrounds and previous experiences affect the way they present and accept information about medical conditions.Groopman writes that he was 11 years old in 1963 before he first heard about hypercholesterolemia (high levels of fat in the blood).
His parents began to speak about the condition, which can lead to heart attacks and strokes – over the kitchen table after his father was diagnosed with it, but there wasn’t an effective medication to treat it.Suddenly, as his cholesterol levels became an “obsession” of the family, egg yolks disappeared from their diet, as did sweet butter, hot pastrami sandwiches and fatty meats.Both of his parents smoked – his father as a result of serving in the US army during World War II, and his mother to show she was a “grown-up.” When his father was diagnosed with hypertension – another risk factor for cardiovascular disease and stroke, among other conditions – saltshakers were banned as well, along with smoked herring. A diuretic prescribed by his doctor did not help with the high blood pressure very much.The family nevertheless had much faith in medicine and doctors such as Jonas Salk and Albert Sabin, who conquered polio with their injected and oral vaccines. Groopman did not directly encounter severe illness until 1974, in Queens, New York, when his father had a heart attack and fought for his life. The small local hospital was quite backward, removing many liters of blood to “release pressure” on the heart. Even though medical knowledge included procedures such as intubation or attaching him to a respirator that could have saved him, the doctor announced 30 minutes after admission that his father was dead.That bitter experience induced Groopman to learn advanced medicine at Massachusetts General Hospital in Boston. But instead of becoming a cardiologist, he turned to oncology, the study and treatment of cancer, going to the University of California at Los Angeles, one of the first hospitals where bone marrow transplants to treat blood-cancer patients was performed. Groopman became a believer in modern medicine, its power and the hope it provided. He was amazed when the chemotherapeutic drug cis-platinum caused the cancer of a son of Mexican immigrant in his 30s to disappear completely.When Groopman sudden suffered from severe and relentless back pains, he succumbed to pressure from his personal doctor to undergo an aggressive spinal operation – which failed to relieve his suffering.At high risk of complications of his hypercholesterolemia due to his family history, Groopman refused to take the widely prescribed statins because a friend took them and suffered such severe muscle pains that he began to limp. But after his doctors implored him to consider taking the pills, he did, and his cholesterol level plummeted, changing his view and making him grateful for improving his health.Hartzband, his wife, had a different family background. Her father, an engineer, believed in meals according to a strict time schedule and not when the children were hungry. Her mother was a healthfood advocate decades before this became popular and when wholegrain bread tasted like cardboard.The parents took their children skiing every weekend.When her five-year-old sister developed a high fever, her mother gave her a bath in ice cubes. When that failed to ameliorate the problem, the family doctor ordered them to bring her to the emergency room immediately. It turned out that the girl had an exploded appendix that sent poison through her body. She underwent numerous painful antibiotics injections and was saved.When Hartzband herself was in medical school, she suddenly noticed a lot of blood in her urine.Shocked, she went to a nurse who calmly told her it probably was a urinary infection. When she read all the warnings on the antibiotics package, she found a long list of possible side effects, even death, and wanted to toss it out, but her skepticism did not prevent her from taking the pills and she became a physician.The authors note that all these personal experiences inevitably affect the way they regard medical care and how they treat their patients.“Even though we have been doctors for more than 30 years,” they write, “we were surprised to discover that our ways of thinking were not fully objective. Our family history, medical history and social history influenced our health preferences.Our role as doctors is to help our patients understand what is logical for them, what treatments are correct when considering personal values and aims. We are especially careful not to force our health preferences on our patients.” They both stress that physicians are not gods and can make mistakes.THEY CATEGORIZE patient mindsets into various groups. There are “believers” and “doubters”; “maximalists” and “minimalists;” those with a “naturalism” orientation, who prefer non-medical therapies, and others with a “technology” orientation. Some patients want maximal, aggressive treatment and others believe that less is more.They noted that most patients are either believers who think medicine offers a good solution that should be pursued, or doubters, who always worry about dangers and the possibility that the treatment could be worse than the disease. The authors explain that recognizing where patients lie on that spectrum is beneficial for both them and their doctors.“Understanding why a patient wants something or doesn’t want something really helps you lead them to the best possible choice.”They also recommend the use of “patient advocates” – intelligent laymen who accompany patients to their meetings with doctors who can pick up nuances and give explanations that the sick person missed. Such people are quite widely available in the US but nearly unknown in Israel.ALL NINE chapters include at least two genuine patient stories each and how they and their doctors decided among options for treatment. When faced with a decision of whether to take statins, for example, personal experience and personality can make one patient refuse, while another to agree immediately, based on the same medical evidence.Whether a middle-aged man agrees to undergo surgery to remove a malignant tumor in his prostate gland, just undergo radiation or have a wait-and-see attitude (because it is often slow growing and patients die eventually of something else) depends on his fears, background and the way solutions are presented by doctors. A radiologist is likely to “push” radiation, while a surgeon will probably advocate an operation, even though he can’t promise it won’t make the patient impotent or unable to control his bladder or bowel function.Should a woman who carries a BRCA mutation undergo radical mastectomy and have her ovaries removed? Subjective factors are certainly involved as much as objective ones.Should a patient with Graves disease (overactive thyroid gland) agree to surgery or receive a radioactive iodine pill that destroys the gland and then take a daily dose of synthetic hormone for the rest of his life or take other medications that may present annoying side effects? The decision depends on many factors.Another variable in the patient’s decision on treatment depends on how statistics are presented by the doctor. If a physician says that two out of five are cured by the treatment, it is different from saying the treatment fails to cure six out of 10, the authors note. One of the chapters provides explanations for abstruse terms such as Numbers Needed to Treat (NNT), Relative Risk Reduction (RRR), Control Event Rate (Basic Risk) and Absolute Risk Reduction (ARR) that need to be understood when deciding what path to take.Influences on a terminally ill patient and his family at the end of life are explained in one complex and painful chapter.There are patients who “search for doctors with the same patterns of thinking as they have. A maximalist patient will probably seek out a maximalist doctor, while a minimalist patient will likely prefer doctor with the same way of thinking… Even without necessarily agreeing with their tendencies and values, he will at least show them honor when his own preferences are different. But it may be that the patient won’t benefit very much from a doctor who acts as a rubber stamp for his decision. Sometimes, a physician who allows the expression of different views and can question the decision-making process will give him more.”The authors confess that researching and writing the book changed their own ways of practicing medicine.There is no one right answer for everyone, the medical duo concludes.“Nevertheless, it’s very important for people to understand how the information applies to them as individuals and then to understand... their own personal approach to making choices... so that they’re confident that what they chose is right for them.”
