A SERIOUS AND QUITE PERSONAL STORY

Earlier today, I put up a snarky post about Donald Trump and the Montréal Cognitive Assessment test that he bragged about acing. Now I should like to return to the subject and this time write quite seriously about a problem that insensitive doctors have in dealing with patients of my age. My wife, Susan, is 87 years old. 30 years ago she was diagnosed with multiple sclerosis and she has been dealing with the disease ever since. Fortunately, the physical effects of the disease have been much less severe than in many other cases and although she has a number of bodily discomforts that she describes as “tingling and burning,” she still walks easily, usually with a cane that she often does not need. However, in the past five or six years the disease has inflicted upon her certain cognitive effects that make it more difficult for her to remember things, to perform complex tasks of a certain sort, and for example, to remember without my prompting to take her daily medications.

When we moved to North Carolina we were quite fortunate to get on the service of a first-rate doctor in the UNC health service and for a number of years he looked after both of us, but perhaps four years ago or perhaps a bit more he left to take some big deal job in Medicare and we had to transfer to other primary care physicians. Susan was transferred to the practice of a young, chirpy, cheerful, relentlessly friendly young woman who was obviously accustomed to being loved by her patients. The first time Susan saw her, with me in attendance as usual, as part of the examination she gave Susan a shortened version of the cognitive assessment survey – clearly something that is standard issue for all physicians in the UNC system. Susan is a proud woman who for many years before we married supported herself and her sons as a real estate agent. Susan graduated with a Phi Beta Kappa key from Connecticut College for Women in 1954 and after moving to Chicago with her first husband, taught botany to premed students at the University of Chicago and worked for 10 years in a research laboratory. She is extremely sensitive about the cognitive deficits that the MS has inflicted upon her but, like the people of our generation, she almost never says anything about this.

As the doctor started to administer the cognitive skills test, Susan felt humiliated by her inability to do easily the simple tasks required by the test and, as I could tell but the doctor could not, she froze up, simply shaking her head as each new task was presented to her. The last task of the test was to write a simple sentence and when the doctor read the sentence that she had written she was startled and surprised. Susan had written, “I am very unhappy.” “Good heavens, why?” The doctor burst out. I could see that the doctor was accustomed to being adored by her patients and could not understand what Susan could possibly be unhappy about. I knew that she was not in fact unhappy, she was angry at having been humiliated, but people of our age and generation don’t say things like that.

When we got home, I wrote a long letter to the doctor explaining exactly what had happened and why Susan was so angry. The story has a happy ending. We found a new doctor for Susan who is everything we could want in a primary care physician, sensitive, understanding, supportive, and willing to work with Susan to make her life more pleasant and manageable.

Now you might think that the moral of this story is that doctors should be nicer people, and there is no doubt that that is true. But that is not really the point of the story at all. The real point is this. The purpose of administering the test to a new patient is to establish a baseline of cognitive performance. When the test is administered again a year or two later, the doctor can compare the score on the first test with the new score and determine whether there has been a cognitive decline in the interim. But because the doctor had administered the test insensitively and without any awareness of the stress that it would produce in an elderly patient concerned about her cognitive losses, the score recorded in the first administration of the test was inaccurate. Susan was capable of doing much better at that time than she actually did. At a later time, when the same test was administered by a more thoughtful doctor, Susan might achieve exactly the same score. The new doctor would think, “Good, there has been no decline in the interim.” In fact, however, they might in the interim has been a genuine decline that the new doctor missed.  This is, of course, not a problem with blood tests or an MRI. The results are what they are regardless of the manner of the administering technician.

The UNC medical school has adopted the practice of having their first year medical students meet in small groups with senior citizens like myself for an informal conversation so that they can get to know the sorts of people they may one day have as patients. I have several times signed up for this session and each time I tell the new medical students this story in an attempt to alert them to the special problems they will face in treating old people.

Incidentally, before writing this post I asked Susan whether she was comfortable with having me tell the story and she said that she was.