If you've seen the film Still Alice, you know that the title character receives her early onset Alzheimer's diagnosis at an appointment at which her neurologist has insisted she bring a loved one. Alice brings her husband inside the diagnosis and inside her worst fears after keeping it all contained by privately consulting a neurologist for a few months.
Actually, Alice's worst fear was of a brain tumor -- a diagnosis she later wishfully prefers to Alzheimer's. In one of the movie's best lines, Alice laments that cancer is more dignified than Alzheimer's. She notes that no one thinks cancer is funny or humorous, whereas the gradual diminishment of self from Alzheimer's can lead to some pretty awful humor, as Alice herself demonstrates with numerous quips about memory loss.
Still, alternatingly mesmerized by her cool and horrified by it, we watch Alice break the tentative diagnosis to her husband and to her three adult children -- each of the children a potential carrier of the early onset Alzheimer's gene. The coolness gene must be hereditary as well -- because we witness a telephone call where one of her daughters calls to report she does, in fact, cary the early onset Alzheimer's gene herself, declining her mother's comfort. Yes, this is a scary cool family.
But Alice's neurologist -- he who spends copious time explaining her diagnosis to her and then to her husband and he who even seeks out an opportunity to hear Alice speak at an Alzheimer's Association event -- is the coolest of all. He seems to pitch it just right: be hopeful until it no longer makes sense to be hopeful and then be pragmatic. And, he is unafraid to act as a reality check.
Well, he must be a bit of an outlier if this week's report on the failure of neurologists or primary care physicians to present the Alzheimer's diagnosis to their patients. Of course, the study does not distinguish between the early onset and advanced onset diagnosis -- the former likely to present as more of a crisis less likely attributable to an aging brain-- so an Alice type might not have been in the study group.
Still, the reasons for failure to disclose diagnosis are remarkable: no time, no billable code, a reluctance to deliver a complex and fatal diagnosis without the certainty highly advanced (or post-mortem) testing that insurance often will not fund can provide, all make it easy to say: "not yet." And, if you post-pone things often enough, it is easy to arrive at "too late" without having told the single person who, in our legal system, most needs to take action on advance health care directives what they need to know: that they have a fatal diagnosis that may fairly quickly rob them of their capacity to plan in this way.
Interestingly, we never see Alice consult an attorney. Are we to assume that super organized Alice and her high powered husband have all the legal documents in order?
One moment of clarity is shown where Alice takes the first failed steps toward committing a long-planned suicide and her husband asks her, once the clarity has fled, whether she would like to be done with living. But, even for that, the "now now" has become "too late." He can only eye her appraisingly as if he had not seen the suicide instructions she left for herself in her computer.