Puting patients back

Two doctors battle against the commodification and industrialization of medicine.

Hospital Bed 311 (photo credit: Ariel Jerozolimski)
Hospital Bed 311
(photo credit: Ariel Jerozolimski)
For many years now Dr. Jerome Groopman’s unfaltering voice for humanistic medicine has made itself heard despite the prevailing discourse of managed care directives and data-driven doctoring.
His numerous best-selling books and accessibly written articles (most notably in The New Yorker, where he has been a staff writer since 1998) have served as a cogent and heartfelt testament to his steadfast belief in the power of the personal narrative and the imperative of a sick individual’s choice to shape the physician-patient relationship.
Joining Groopman in his outcry against the commodification and industrialization of medicine is his wife of 32 years, Dr. Pamela Hartzband. He, an oncologist and hematologist at Harvard Medical School, and she, an endocrinologist there, have written their first book together. The product of their collaboration, Your Medical Mind: How To Decide What Is Right For You, is intended to help patients cut through the confusion of the healthcare system, drug company advertising, media reports and neighborly advice to determine the right course of treatment for them. Groopman and Hartzband also offer an entirely new terminology to empower people to better understand and articulate their own healthcare decision-making reasoning.
The doctors’ first subjects for study turned out to be themselves. With their three grown children now out of the house, they began taking early morning walks together.
“On these walks, we brainstormed and often talked about trying to understand why our patients would choose one course of action and not another,” Groopman recalled in a phone interview with The Jerusalem Report. “As we did this, we began to realize that each of us had a different approach or philosophy – a different medical mind, as we ultimately called it.”
Deeply influenced by his father’s death at the age of 55 while being treated for a heart attack at a less-than-state-of-the-art local hospital in Queens, New York, Groopman, now 59, became a maximalist with a technological orientation toward treatment. The 59-year-old Hartzband, on the other hand, has always been more of minimalist and a doubter. With her naturalist orientation, she has preferred to let her body try to heal on its own before using medications or undergoing tests.
In order to better understand these different “medical minds” that they were beginning to recognize in themselves, the couple initially “looked at some of the classical decision analyses that had been applied to medicine,” said Hartzband during the phone interview.
“And we found that they really were flawed and not useful. So we decided to go back to the patients.”
“We thought about William Osler [a Canadian-born physician of the second half of the 19th century and early 20th century often referred to as “the father of modern medicine”]. He is well known for his comments on making a diagnosis. When you are making a difficult diagnosis, he said you have to listen carefully to the patient, because if you know how to listen, he’ll tell you the answer,” Hartzband elaborated.
After two years of interviewing scores of patients of different ages and socioeconomic backgrounds from all over the United States with a wide variety of medical problems, the doctors circled back to the scientific decision-making literature. Many of these studies, cited in the book’s substantial footnotes and thorough bibliography, come from the medical field, but some are by experts in other areas. They include, for instance, papers by Israeli- American psychologist and Nobel laureate Daniel Kahneman, known for his work on the psychology of decision- making and behavioral economics.
It was the layering of patients’ personal decision-making narratives onto the medical literature that eventually led to Hartzband’s and Groopman’s coming up with their innovative terminology. Readers come away from the case studies presented in the book with a sense of where they personally fall along the maximalist-minimalist, believer-doubter, and technologist-naturalist continuums, and are thus able to better understand their individual approaches to translating medical advice into action: in short, their own medical minds. “From an ideas point of view, the material of the book is new. No one has ever come up with these terms, the language to describe the different mind-sets… It has resonated tremendously because people see themselves within these different categories along the spectrum,” Groopman reported.
The book can be revelatory not only for patients, but also for physicians. According to Groopman, one of the biggest lessons for doctors is that it is a “pretense that you can tell someone what their experience is going to be and that you know what the best experience for them will be based on all this statistical analysis. It turns out that this is not true.”
“Studies were pointing out that the more the patients truly understood the information once it was presented very clearly – framed in the positive and the negative, and the patients really understood what the risks and benefits were – the more they diverged in their choices,” Hartzband further explained.
Unlike investigators who thought patients were acting irrationally, Hartzband and Groopman discovered that this was not really so. It was people’s different medical minds that were leading them to make different decisions based on the same data.
“Doctors think that the more clearly everything is explained, the more everyone will agree with expert opinion. But that doesn’t happen,” said Hartzband. “Also, you can’t put a number on the experience of a person. It’s meaningless,” Groopman added.
It is precisely the quest to understand “the experience of a person” that has been the through-line of all of Groopman’s books.
In his latest two, Your Medical Mind and How Doctors Think (published in 2007), his focus has been primarily on the cognitive decision-making processes of patients and doctors. His earlier works, The Measure of Our Days and The Anatomy of Hope dealt more with the spiritual lives of ill people. Second Opinions, a collection of eight clinical dramas, contained the seeds of the main idea presented in the new book, but it was more descriptive than proscriptive, and it was from the doctor’s perspective rather than the patient’s.
“When you’re in your 20s, 30s and even early 40s you’re swept up in the science… As you get older and more experienced, you become incredibly interested in the stories of the people you care for. That makes it fun and expands your world in many ways,” Groopman explained.
“I think that the earlier books, particularly The Measure of Our Days, which is the most personal… I was trying to understand how I could integrate my religious background [he describes himself as Jewish ‘Conservadox’] with my career,” he reflected. “I was so immersed in laboratory science and research science that I felt the personal need to hold on to the spiritual and understand how the spiritual could coexist for me with the scientific… I have within me these two different dimensions, which I don’t see as conflicting. I just see them as coexisting; they’re asking different questions – one is the strictly scientific and the other is the spiritual. I wanted to sort of give space to both of those.”
He views Your Medical Mind somewhat differently. “I think with Pam, particularly in this book, this is really a discovery book.
We looked inside ourselves and we went far outside of ourselves, deep into the minds of patients,” Groopman said.
Your Medical Mind will likely have many detractors among insurance companies and proponents of evidence-based medicine, including many of their fellow physicians.
Groopman and Hartzband do not deny the fact that Americans are living in an age of anxiety and conflict in terms of healthcare.
“We don’t ignore it… but our feeling is that the place to begin for the patient and the doctor is what’s right for you,” Groopman asserted. “That’s the most important thing to understand and determine, and from there, you can see how it can be obtained or not obtained, or what kind of modification has to be made based on the constraints of the system.”
“The book is not about health policy economics. We are very focused on the individual and believe in the individual,” he warned. By way of illustration, they include discussion of varying recommendations for the treatment of prostate cancer and controversies over the effectiveness of mammograms, among other examples, to illustrate the problems of having a uniform single expert panel or an insurance company “bring things down as though they are up at Mt. Sinai,” as Groopman put it.
“We are hoping to draw attention to the fact that in this time of change we need not lose sight of what we feel is most important, which is the individual and what is right for him or her,” Hartzband echoed her husband.
For the couple, while there are some fundamental principles in medicine, there is at the same time no room for absolutes. They view clinical practice through gray-shaded lenses, and they consider the source of this inclination to be very Jewish. “Jews are not afraid of controversy, of mahloket… So we think the idea of diversity of opinion, the idea that individuals can think differently in the search for what is right or what is true, is deep within Jewish culture,” Groopman shared on behalf of himself and Hartzband. “ And we also think that pikuah nefesh, the sanctity of the life of each person, of trying to do what is right for that person, is a very powerful imperative. Sometimes medicine needs to be looked at from 30,000 feet above, but we are really focused on each person, and to us that kind of respect and attachment to the individual is a deeply Jewish principle.”
The two have found already that Your Medical Mind resonates for Jewish readers.
In talks they have given to large audiences at Jewish community centers and synagogues in Boston, San Francisco and Los Angeles since its publication, they found that audiences were split down the middle in terms of minimalist and maximalist mind-sets. “we also did some thought experiments with the audiences about natural and technological preferences, and we found that they were divided roughly 50-50 on that, as well,” Groopman reported. Hartzband noted that these even splits did not surprise them, because neither of them has perceived any trends among Jewish colleagues or patients in terms of mind-sets. “Jews are remarkable for their diversity,” she said. “It probably all goes back to the Jewish tradition which encourages individuals to form their own opinions.”
Groopman, however, pointed out the cultural evolution within the Jewish community in terms of how doctors are perceived. “It used to be that Jews put doctors on a pedestal and did everything they said and more. but that highly paternalistic relationship has changed and also been accompanied by a shift away from science and technology as the sole solution to all problems,” he said. “we suspect that these opposing views were always there, as they were in my family when I was growing up, but they have only become more widely expressed in recent years,” Hartzband added.
With US President Barack Obama’s healthcare reform law directive for all Americans to purchase health insurance headed for review by the supreme Court next spring, the focus of healthcare decision-making in the US is very much in the big picture.
However, Groopman and Hartzband’s book reminds us that healthcare is ultimately delivered in the small picture, in the interaction between doctor and patient. and no matter what policymakers and insurers have in mind, it is ultimately the medical mind of the patient that should prevail.