Patients with Early Alzheimer's Should be Told!

The year that's about to pass into history was notable for a number of medical developments.  One such story that will loom larger as our population ages has to do with the early detection of Alzheimer's disease.  Researchers have offered an array of tests that can detect the telltale signs of the disease long before memory and cognitive impairments become noticeable.  These include biomarkers that detect Alzeimer's at the molecular level as well as neuroimaging that utilizes PET scanners and radioactive tracers.  Last week, a New York Times article told the story of a vital middle-aged woman who was tested and told she was in the early stages of the career.  The article talked about the dilemma facing some physicians who feel that it's unfair to tell patients they're in the early stages of Alzheimer's because there are no effective treatments to prevent the onset of symptoms.

Balderdash!  People in the early stages of Alzheimer's are precisely the kinds of patients who should be told they have it. To withold that kind of information is to treat patients like children.  It's their body, and they have a right to know what's going on with it. 

The other thing that bothers me about this so-called ethical argument (so-called to me because I think there is no ethical argument) is that it's somehow appropriate to withold information because there's no effective treatment. 

Quite frankly, who cares if there's no effective treatment?  Even if there isn't, I think most people would want to know so they can live life knowing they have this disease that will one day rob them of their memories.  What if they want to take a trip...try a different job before it's too late...retire early...tell their children that the fortune is hidden by the third maple tree in the meadow...tell their grandchildren stories of where the family comes from...you fill in the blanks? 

Beyond arming patients with knowledge so they can live the lives they want to live, how about a little social responsiblity.  These days, bioethicists talk about the patient rights.  How about patient obligations to society?  Want to know why it's illegal in most municipalities to shovel the snow on your part of the sidewalk onto the street?  As citizens, we're supposed to do our bit to maintain common areas free of snow so that vehicles driven by fellow citizens - not to mention emergency medical technicians - can pass by unimpeded.

In that sense, I think citizens in our society should be told they have the early stages of Alzheimer's disease because they should have the obligation to arrange their affairs appropriately.  A patient who is told they are in the early stages of Alzheimer's disease should seek legal advice to draft a power of attorney and to set up advance directives so that their wishes will be known should they no longer be competent to make decisions about their health.  In the ER, I see all too many patients who have not given any thought to advance directives.  I see that as a dereliction of personal responsibility. 

With early detection of Alzheimer's disease, medical science has given us a chance to show courage to face the future.  It has also given us an opportunity to demonstrate a sense of responsiblity to ourselves, our families and to society.  Both are too important to pass up.