Should Your Doctor Lie to You?

            The nation is riveted by President Trump's illness: whether we hate Trump or love him, we want to know how he is faring with Covid-19. We want to understand what this disease looks like in an elderly man with at least one chronic health condition. Unfortunately, what we have been told by the physicians involved in Trump's care has been marred by commissions, distortions, and downright lies.

            There is a long history of presidents wishing to mislead the public about their health and of their physicians colluding in the deception—Woodrow Wilson’s stroke was concealed, Franklin Roosevelt’s high blood pressure and heart problems were downplayed, and John F. Kennedy’s Addison’s disease and chronic back pain were not fully disclosed. But however objectionable we may find this public lack of transparency, President Trump’s personal physician has claimed a different reason for being less than forthcoming. He asserted that he had understated the seriousness of his patient’s condition because he “didn’t want to give any information that might steer the illness in another direction.” That is, Dr. Sean Conley didn’t want his patient to know that his low oxygen levels and high fever were worrisome, so he lied about his condition. Telling the truth, he was asserting, could harm his patient. But is that true?

            Truth-telling in medicine has been the subject of extensive ethical analysis and of clinical study. The bottom line is that while doctors used to routinely lie to their patients in the belief that they were protecting them, for the last 50 years the standard of care has been to keep patients informed to whatever extent they wish and, based on their accurate understanding of their situation, to engage them in decision-making about treatment.

            The change in practice occurred in the sixties and seventies: in 1961, when a questionnaire was administered to oncologists asking them if they told their patients that they had cancer, fully 90 percent of them said they did not. When the study was repeated in 1979, 97 percent of them said they would tell patients their diagnosis. The earlier view was based on the paternalistic belief that physicians always knew what was best for their patients and on the conviction that if patients knew they were seriously ill they would become depressed and possibly even suicidal. Between 1961, when the first study was conducted, and 1979, when the second study was carried out, western biomedical ethics came into its own as a field.

            Physicians and medical ethicists increasingly recognized that there was often no single optimal course of treatment: several different possible approaches might be possible, each with its own likelihood of benefit and each with its own risks; which approach was “right” for a given patient depended on that person’s preferences and values. One person with a particular type of cancer might wish to undergo treatment with chemotherapy that had a high probability of resulting in serious side effects in exchange for a small chance of life-prolongation; another individual with the same disease might opt for a different treatment that was less likely to cause severe side effects but that offered a smaller chance of life-prolongation. Whenever the choice of treatment depended on values as well as technical expertise, the patient had to be included in the decision-making along with the physician. The principle of beneficence, or doing good, and the principle of non-maleficence, or not doing harm, co-existed with the principle of autonomy, or the right of patient self-determination. 

            Choosing the right treatment for a particular patient, in many cases, required that the patient know the truth about his diagnosis. Without knowing the facts, he couldn’t possibly participate in a conversation with his physician about treatment options. Moreover, growing evidence indicated that when patients are engaged in their own health care, they do not become morbidly depressed or overtly suicidal; on the contrary, health outcomes improve. 

            The regrettable example set by the president’s personal physician notwithstanding, you should expect honesty from your doctor. Yes, you should expect that your doctor will have the communications skills necessary to impart bad news sensitively. Trust is at the core of the doctor-patient relationship, and trust cannot be built on a lie.

Caveat Emptor!

Quite by accident, I stumbled upon Kurt Eichenwald’s memoir in the new book section of my local library. I remembered the author from his work as an investigative reporter who uncovered massive white collar crime. His book, The Informant, about just such a scandal, became a best seller and a movie starring Matt Damon. When I realized the new work had a medical theme, I was intrigued; when I discovered that much of the story unfolded at Swarthmore College, where Eichenwald had been a student, and where I had been a student some years earlier, I decided I had to read it.

At first glance, you might think that A Mind Unraveled has no relevance for geriatrics. The diagnosis and misdiagnosis of Eichenwald’s temporal lobe epilepsy as well as the shockingly misguided treatment by ostensibly reputable physicians all took place in the early 1980s, when the author was a teenager or in his early twenties. Unfortunately, the book’s messages are all too relevant for older patients today. Distilled to their essence, those messages are first, that not all doctors are created equal and second, that communication is key. The long, complicated, and riveting story of lying, arrogance, and sheer incompetence that led to those conclusions is worth reading. I read the entire 380-page book in a single weekend, devouring it much as I would a spy thriller.

The not-all-doctors-are-created-equal conclusion is particularly relevant to older individuals because even physicians who are competent within their sphere of expertise often have little knowledge or understanding of geriatric issues. In my last post, commenting on recent data indicating that despite all we have learned about preventing falls, older people are falling—and injuring themselves—at higher rates than ever before,  I suggested that a critical weakness of prevailing fall-prevention systems is that they hinge on the knowledge and interest of physicians, both of which are often absent. Identifying a physician who is a good diagnostician, a kind person, and who actually knows about falls, confusion, polypharmacy, cognitive impairment, incontinence, and other common geriatric syndromes is imperative, particularly for frail older people. Finding such a person can be challenging, and being confident s/he has the requisite expertise is also challenging. Board certification in geriatrics is one indicator; working with a multidisciplinary team including a nurse practitioner is another; word of mouth is a third. Trial and error may prove the only way to be certain you have found the right person: come to your first appointment with a checklist of topics the physician should be sure to address such as functional status and advance care planning. If the physician doesn’t address those issues during an annual physical exam, absent a compelling need to focus on an acute medical problem, it’s probably time to find someone else.

The communication-is-key conclusion is relevant to all physician/patient interactions, but is especially important for older people, many of whom have hearing problems or cognitive impairment. It took multiple tries before Eichenwald found a neurologist who understood that given that all the medications used in the treatment of epilepsy have potential side effects, choice of which drug to use involves balancing risks and benefits. The patient’s preferences, which side effects s/he finds tolerable in exchange for how much benefit, are essential in making a choice of drugs. For geriatric patients, the role of preferences is often paramount in medical decision-making. The assumption that the goal of treatment is cure may simply not apply to an 88-year-old with multiple medical problems; maintaining or bolstering his ability to remain independent may, for example, outweigh the benefits of disease eradication. Or cure may be irrelevant, as with some cases of prostate cancer, if the odds are that the patient will die of some unrelated problem long before his prostate cancer metastasizes, but the risk of surgical treatment causing incontinence or impotence now is great. 

Regrettably, the dismissive attitude of Eichenwald’s physicians to him as a person are all too familiar to many older individuals. Just as many of the neurologists in A Mind Unraveled failed to take their patient seriously as a person with anxieties, concerns, and understanding, so too do physicians often neglect to treat their older patients with respect and sensitivity. To find a physician who listens you cannot rely on board certification. Word of mouth can help (if the mouths belong to people you trust, preferably people whose personalities and medical problems are similar). But once again, trial and error may be the best path. Don’t hesitate to use yourself as a barometer. Only you can gauge whether you “clicked” with the physician. Just as you should be reluctant to listen to the shoe salesman who assures you that those very uncomfortable shoes will improve with time, you should ignore at your peril the internal voice that tells you to stay away from a particular physician.

I would like to believe that Eichenwald’s experience was highly unusual. Most physicians who treat epilepsy know that a negative EEG doesn’t mean there’s no seizure disorder (but the presence of characteristic electrical changes indicates there is). Most physicians would monitor blood counts when prescribing a medication that has a “black box warning” from the FDA stating that the drug can cause life-threatening bone marrow depression and that regular blood tests are required. No competent clinician would offer a diagnosis of a brain tumor based solely on a few of the patient's behavioral quirks. And I haven’t even touched on the arrogance and prejudice that animated members of the Swarthmore administration, leading to their expelling young Eichenwald—and then readmitting him when faced with the prospect of what for them was an unwinnable suit charging civil rights violations (in particular, violation of Section504 of the Rehabilitation Act of 1973 requiring educational institutions to meet the needs of students with disabilities). 

We can only hope that the behavior described in this memoir is extraordinarily rare in colleges and universities today. But we do know that just as systematic racism persists today, so too does systematic ageism. Caveat emptor!