This was a long-nosed lie, and I knew that payback was coming. Several minutes earlier Ginny had bulldozed into my office with her walker. "Why the hell am I here? What's this all about?" I stared at her for a moment in silence. "All I want from you is my scooter!" she demanded. "Give it back!" The bare truth was that Ginny was moderately demented and perpetually hostile and paranoid. I was getting calls from nursing staff telling me that she had fixated on one particular chair on her unit and was forbidding anyone else to sit in it. It had even come to blows one day when she punched poor Victor, who had unknowingly sat in "her" chair, his deaf ears not hearing her stomping and curses from behind.
Fueling her anger was the fact that for several months Ginny had been demanding the return of her electric scooter. The nursing home administrator and I had recently made a decision to restrict her from using it for safety reasons, and I was supposed to inform her that day. However, given her demeanor and her hatred of psychiatrists, I feared an explosion.
"I'm one of your doctors," I stated, intentionally leaving out my specialty. She fired back, "Can I have my scooter?" I hesitated to answer. "Well, Ginny, we haven't yet decided,"
I lied. Ginny's angry face seemed to scrunch up into a single point that jabbed at the fragile bubble of my lie. She could be amazingly prescient even in the fog of dementia and paranoia. "Liar! Liar!" she accused, and then stood up and shrieked at me, "Go to hell!" I quickly opened the door and let her pass. I could hear her carrying on as she traversed the long hallway of the clinic. "That doctor can go to hell!" she called out repeatedly, her words echoing back to my office several times. "He can go to hell!" In her wrath she seemed to stretch my long-nosed lie past each office bay, around the front desk, and out into the courtyard in front of the clinic. Maybe it would have been better if I had simply told the truth.
Truthfulness is the foundation of the doctor-patient relationship, both as a method of discourse and as one of the "most widely praised character traits" of a doctor. Gone are the days when doctors withheld certain diagnoses or treatment details from patients. If anything, doctors today are often forced to disclose excess and sometimes unnecessary information due to concerns about liability or to patients who have already canvassed the Internet on their own and have pressing questions. The doctor's challenge is to present what he or she knows to be true about the diagnosis and its treatment options and to do so in a manner that truly informs the patient. But there are limitations and pitfalls to this process, as illustrated in the following paraphrased conversation I recently had with a seventy-five-year-old moderately demented patient and his wife:
Patient: Doctor, I know I can still drive. Just let me take a test.
Doctor A: I'm sorry, Mr. K, but I can't help you with that. As we discussed, your memory impairment makes it unsafe for you to drive.
Patient: Just let me take the test. I can drive just fine.
Doctor A: The memory testing tells us that you would not be a safe driver.
Patient: My memory is not that bad. I know I can drive.
Patient's wife: Honey, I told you that the car is not working now and needs to be fixed. Let's talk about it later.
Mr. K's wife did what caregivers for individuals with dementia often do -- she placated his concerns for the moment and then redirected him, in essence telling a lie. Should doctors ever do the same thing?
According to a leading book on medical ethics, "Careful management of medical information -- including nondisclosure, deception, and lying -- will all occasionally be justified when veracity conflicts with other obligations." Every clinician has encountered situations in which being too bluntly honest about a diagnosis can actually be harmful to the patient, and so we employ what is euphemistically referred to as "benevolent deception." Consider mentally fragile patients with whom full disclosure of a devastating diagnosis may cause excessive anxiety, abandonment of ongoing therapies, or total loss of hope. In these circumstances, strict adherence to the clinical virtues of truthfulness and candor risks violation of the core ethical principle to do no harm. We are left telling a series of what I term "short-legged lies," or partial truths that take small steps toward eventual and necessary disclosure of the complete truth.
As much as I urge eventual, complete disclosure of the truth to every patient, there are individuals with dementia who will not be able to appreciate the meaning of what they are told and cannot correctly distinguish between truth and deception. Perhaps there is still an obligation to at least go through the motions. I think about how I endeavor to always formally introduce myself to patients regardless of their mental state -- even when they seem completely insensible. There is a transcendent ethical principle at stake here applying specifically to severely demented individuals: the preservation of their human dignity, even when they lack the ability to perceive its personal value. Truth-telling, in some form, appears to be a key part of this principle.
In work with cognitively impaired patients, there is a certain savoir faire to telling the truth, or a piece of it, without causing unnecessary confusion or anguish. "Frank but not blunt" is how one textbook characterizes the ideal approach, recommending that the clinician present the reality of a medical situation without causing the patient to lose all hope. This is a difficult and sometimes impossible tightrope to walk, especially when a clinician has to convey a diagnosis in which there is no hope for cure. In those moments clergy are often more skilled than doctors at providing hope for something other than physical redemption.
I recently had to inform a relatively young couple in their late fifties of a diagnosis of Alzheimer's disease in the husband. There was no escaping a frank presentation of the data and the logical conclusion. I was girded with the knowledge of a recent study suggesting that, contrary to the fears of many doctors, patients are unlikely to demonstrate catastrophic reactions when a diagnosis of dementia is relayed. In fact, many are relieved. In this case, however, there was no visible relief. Instead, I saw the color drain out of the woman's face as the meaning of the diagnosis settled in. Her tense facial expression relaxed, no longer anticipating the verdict, but then began to absorb the tears tracing a growing look of despair. She had many questions that I knew would come in time, but I wasn't ready to lay out any more truths that day. It was not even the moment to talk of hope -- of medications, therapeutic programs, and research. It was a moment instead to retreat into the practice of medicine described by the poet Virgil as ars muta, the "silent art." Bioethicist James F. Drane captures a more modern-day description of this form of truth-telling: "There are times for both the patient and the doctor when silence both carries deep meaning and is an appropriate expression of truth."
Excerpted from Marc E. Agronin's How We Age: A Doctor's Journey Into the Heart of Growing Old (De Capo Lifelong Books).