I was initially startled when I clicked on a link to this New Yorker article and discovered that, although it’s in a brand new issue, it’s written by Oliver Sacks. I have long been a Sacks fan (in addition to a Sox fan), but I’m well aware that he died some time ago (2015). Does the New Yorker hold its non-political pieces for that long prior to publication?
The article itself is short, but treats the very interesting topic of whether doctors should tell dementia patients their diagnoses, and under what conditions:
If there is a serious, perhaps life-threatening or life-altering condition, what should one tell the patient, and when? How should one tell the patient? Should one tell the patient? Every situation is unique, but, for the most part, patients want to know the truth, however dire it is. They want to hear it delivered with tact, though, and with a sense, if not of hope, then at least of how such life as they have left can be lived in the most dignified, fulfilling way.
Such telling assumes a whole other order of complexity when a patient has a form of dementia, for here one is intimating a sentence not only of death but of mental decline, confusion, and, finally, to some degree, loss of self.
When I was a child, patients were not routinely told their diagnoses for terminal illnesses like cancer. The idea was that it would only destroy their quality of life and since there weren’t many effective treatments it also wouldn’t do any good. Yes, it would help them get their affairs in order, but other than that the benefits seemed small compared to the drawbacks.
That all changed many many decades ago. Now, with the internet and many more types of treatment that can extend life (or even at times perform what amounts to a cure), patients not only are told their diagnoses but can do enough research to deluge a doctor with facts or even “alternate facts.” Some patients opt out of knowing that much; it’s a personal decision. But just about everybody is told the news, complete with percentages and/or chances for short- as well as long-term survival, and choices for treatment. It sometimes can be overwhelming, although my guess is that most patients are in favor of truth-telling in these sorts of circumstances.
But a diagnosis of progressive dementia such as Alzheimer’s is in a different class. For some people, it may even be more terrifying than a diagnosis of a terminal illness would be, for exactly the reasons that Sacks states. For example, I know a couple of people whose reaction on being told they had cancer (in one case, rapidly terminal cancer) whose reactions were to crack the mordant joke, “Well, at least now I know I won’t get Alzheimer’s.” That how frightening the latter is. And I know two people with a dementia diagnosis—one probably Alzheimer’s, one just mild cognitive impairment that may or may not ever get worse—and it’s shaken their lives, lives that were already shaken by the problems they were having that led to their diagnoses in the first place.
I don’t have a solution. But my own rather bleak observation is that if it’s really a progressive dementia situation, the person will eventually end up forgetting his or her diagnosis even if told. Of course, in the meantime (which can be years and years and years) does that person want to be under the cloud of the diagnosis or not? Again, there’s the advantage of getting enough warning to put one’s affairs in order, but otherwise, until better treatments develop, I just don’t think it likely that it would help most people to be told, although I am virtually certain that individual differences in reactions abound.
Such a sorrowful and difficult topic.
[NOTE: The Sacks article also discusses the importance of a familiar setting and familiar role in orienting dementia patients, with some fascinating examples.]