The practice of medicine is filled with “preference-sensitive” decisions — choices that are, in large part, driven by the values of our patients or their surrogates. As neurologists, we experience this everyday: the patient with amyotrophic lateral sclerosis decides not to take riluzole because the benefits do not outweigh the nuisance of the side effects; the 65-year-old with Parkinson disease opts for deep brain stimulation surgery because he would “rather do something than nothing”; the asymptomatic woman is not sure if she should undergo a carotid endarterectomy as her physician recommends; the 80-year-old with advanced dementia is admitted with an infection and discharged nine days later with a feeding tube inserted into his stomach. And the young woman with clinically-isolated syndrome would rather try a watchful waiting approach and improve her diet and exercise than immediately start injectable medications. The list goes on and on.
No one would argue that these medical decisions should be a personalized choice based on scientific evidence and the patient's own values. For some, the long-term benefits outweigh the risks; for others, the immediate risks outweigh the long-term benefits.
Then why have Jerome Groopman and Pamela Hartzband, a married couple who serve on the faculty of Harvard Medical School and on staff at Beth Israel Deaconess Medical Center, written Your Medical Mind: How to Decide What is Right for You? Simply, the informed consent process in routine medical care is inadequate and there are wide gaps in the process of shared decision-making — that collaborative process whereby informed patients and their providers make health care treatment decisions together taking into account the best scientific evidence available as well as the patients' values.
This may be difficult for many providers to understand or want to understand — there are blind spots in looking at and appreciating such data. Patient surveys show that interactions with health care providers do not suggest such a cooperative approach. And a small, persistent group of health services researchers — for example, John Wennberg, MD; Robert Brooks, MD; Elliott Fisher, MD — have been trying to get the word out for decades that the treatment patients receive often depends more on where they live or who they see rather than on their diagnosis or prognosis. The rates of various procedures vary greatly: back surgery by six-fold, carotid endarterectomy by 10-fold, feeding tube insertion in cognitive impairment by three-fold, and ventilator withdrawal in severe head trauma by four-fold. Here, too, the list goes on and on.
In the absence of quality, shared decision-making, physicians' preferences — or the system within which they work — often determine treatment rather than their patients' underlying values and choices. If physicians are poor judges of patient values and preferences, then patients may not receive the most appropriate treatment. As an extreme analogy, the treatments provided to the person who might have chosen something else if fully informed or who did not receive the therapy of choice are as egregious as “wrong-site” surgery or performing surgery on the wrong patient. This is where Drs. Groopman and Hartzband step in and provide a “caveat emptor” roadmap for patients about the unconscious or conscious biases that may affect medical decisions, and as a result, to possibly not receive the truly personalized care they both need and want.
The authors' approach to teaching patients “how to decide” is to use very readable medical examples of patients who approach their care differently — including their own very different mindsets. As Dr. Groopman is a medical oncologist and Dr. Hartzband an endocrinologist, they use examples from the general and subspecialty medical fields: for example, statins for hypercholesterolemia, antithrombotics for atrial fibrillation, early treatment decisions for breast and prostate cancer, elective surgery for orthopedic problems, and end-of-life treatment preferences. Their concepts easily overlap and generalize to the field of neurology, however. These examples beautifully show how patients differ from one another and often from their physicians, in the weights they assign to factors that affect their medical decisions.
The authors interweave these patient stories with common lessons about evidence-based medicine. They discuss the important distinction between absolute and relative risks, for example, as well as the insights gained from using “numbers needed to treat” and “numbers needed to harm.” In one instance, the patient Susan is surprised when she finds out that 300 patients like her would have to be treated with a statin for 10 years to prevent one heart attack. They also cover the importance of framing effects — presenting material in both the negative and positive frame as well as different presentation formats — and the common biases that may influence one's decision such as availability bias, omission bias, and decision regret. They draw on the classical lesson of loss aversion, that is, that people experience loss greater than they do gains — and how this will influence one's willingness to accept risk.
With particular relevance to neurological diseases, I was delighted to see the authors spend considerable time on the power of adaptation and how patients and physicians often “misimagine the unimaginable.” They provide examples of “focalism” — the tendency to focus on future disability rather than the remaining abilities — and “buffering,” the degree to which coping mechanisms will buffer against extreme emotional suffering. The authors even cite Richard Cohen's autobiographical account, Blindsided: Lifting a Life Above Illness (HarperCollins), about how he adapted to the changing life trajectories brought on by his multiple sclerosis and colon cancer.
The authors' approach to explaining the detail of making medical decisions may be less helpful; indeed it can be somewhat disorganized. That said, by far the most useful aspect of the book is the way different types of decision-makers are categorized — the types of patients we confront daily in our medical practice — the minimalists, maximalists, doubters, believers, technology and naturalism-oriented. The beauty of these categories is their simplicity. They are not meant to be mutually exclusive and they use repeated examples of how patients fall on the spectrum. These categories are the authors' own “Myers-Briggs” type personalities of how patients view medicine and how they approach making medical decisions. These descriptions have resonated so much for me that I have already found myself using them in my own medical practice. And it is why I think the book will be as interesting and useful to providers as it will be to patients.
The book does not readily provide the policy context within which it finds itself and ultimately any physician who decides to read it. Just as we tackled the “evidence-practice” gap 20 years ago, we need to define, measure, and begin to narrow the “preference-practice” gap — this will likely be the next quality agenda.
The book also does not provide an account of the emerging policy proposals to narrow this gap. This will include developing physicians' communication skills for patient-centered care, initiatives to use information technology as an important tool to facilitate high quality decision-making, the use of decision aides to incorporate in routine practices, surveys to assess patient knowledge and goals, and how to incentivize providers, patients and overall systems of care to motivate desired changes in the behavior of its major participants. In fact, the Patient Protection and Affordable Care Act authorized considerable funds to support approaches to improve shared decision-making. Several states have laws — Washington State in 2007, for example — or are considering laws that promote the use of shared decision-making with approved decision aids.
This book is not about cost containment or stealth ways of rationing. It is not about favoring autonomy over paternalism. Indeed, the authors point out that up to one-third of patients want to completely delegate their medical choices to their physicians. Ultimately, it is about amplifying the voices of patients when medical decisions are made and portends a growing but needed tension between “evidence-based” and “preference-based” medicine. •
Neurology TodayAssociate Editor Dr. -Holloway is professor of neurology and community and preventive medicine at the University of Rochester Medical Center in New York.