Don’t Ask, Don’t Tell

A few weeks ago I wrote a post about the unbelievable cost associated with Alzheimer’s disease and how large a population it is likely to affect.  According to an op-ed piece written by Sandra Day O’Connor, among others, it is estimated that by 2050 approximately 13.5 million Americans will be stricken with Alzheimer’s, up from five million today, and that the cumulative price tag for treating Alzheimer’s, in current dollars, will be $20 trillion.  In contrast, remember that the cost of our ENTIRE healthcare system today is around $2.4 trillion.

This week there was a follow-up piece in the NY Times entitled, “Tests Detect Alzheimer’s Risks, but Should Patients Be Told?” The article described how new diagnostic tests have become available that make it possible to detect early Alzheimer’s and, more interestingly, to predict more accurately one’s likelihood of getting Alzheimer’s in the future.  The focus of the article was the moral and ethical dilemma presented by the availability of this knowledge.

Since there is no known treatment for Alzheimer’s and none on the short term horizon, physicians with knowledge of a patient’s Alzheimer’s risk are put in an interesting spot.  If they tell their patients the bad news, it may have a profound negative effect on their psyche and lead to debilitating depression; if they don’t tell, they are withholding information that might enable a person to prepare their life more effectively to deal with the oncoming challenges.  As the article so well articulates:

“Modern medicine has produced new diagnostic tools, from scanners to genetic tests, that can find diseases or predict disease risk decades before people would notice any symptoms.  At the same time, many of those diseases have no effective treatments. Does it help to know you are likely to get a disease if there is nothing you can do? “

Remember that old adage, “what your mother doesn’t know won’t hurt her.”  Most frequently used by guilt-soaked dads who overfeed their kids sugar and plant them in front of a video game so they can watch the foot ball game, it’s got a whole new meaning when it comes to healthcare.  This is particularly so in an age when diagnostic medicine has charged far ahead of therapeutic medicine.

It is a particularly weird dilemma when a patient proactively comes in looking to find out whether they have a proverbial target on their brain.  Some doctors refuse to offer the testing (wait, stop the presses! a doctor refusing to provider a service for which they can bill? That can’t be – this is America!).  Others physicians provide the testing but, as the article points out, give somewhat cryptic answers about the results (“well Mr. Smithers, I can’t tell you the results, but I can tell you that what you are rhymes with brewed.”).  Other physicians just lay it on the line and hope for the best, going with the “you asked so I told you” approach to the universe.  It is very unclear to me what constitutes the most ethical approach.

What I found most intriguing about the article was the discussion about what happened when physicians did choose to tell their patients about the results of their Alzheimer’s diagnostic testing.  According to the article, the only real difference in behavior between those told they did have a strong genetic predisposition for the disease vs. those who did not was that those at high risk were more likely to buy long term care insurance, exercise more and take vitamins.  I’m guessing that a lot of them also started doing crossword puzzles and Sudoku since those are other mythological means of forestalling the onset of Alzheimer’s.

Now this level of patient sanguinity might be a little misleading, as the “research” on the psychological impact of knowing one is a ticking time bomb took place immediately after the information was learned.  No one says what happened to these patients 4 weeks later after the shock wore off and whether they were still blithely carrying on their lives as it nothing had changed.  It certainly is possible that they just took the information in stride.  We obviously all know we’re going to die someday.  Maybe knowing that it could be from Alzheimer’s is no different than knowing it could be from diabetes or high blood pressure – it doesn’t stop many people from sucking down the eggnog at Christmas.

Those who were told they did not have a strong genetic predisposition to get Alzheimer’s were obviously relieved, but was their subsequent behavior any more rational than those getting the bad news?  One guy in the article who found out he was not at risk said that if he had found out he was a likely Alzheimer’s candidate he would have taken early retirement and travelled.  The inference was that now he is going to work another twenty years and put off following his bliss.  I hope that guy didn’t leave the neurologist’s office and get hit by a truck, as it would be just his luck for getting cocky.  That would no doubt be my fate; “No, Ms. Suennen, you’re not going to get Alzheimer’s, but you are going to trip over your Chihuahua on the stairs this afternoon and fall immediately to a fur-covered death.  Have a nice day.”

As the Alzheimer’s tsunami hits our shores it’s going to get interesting.  If people know they have a high likelihood of getting the disease, will it become their legal responsibility to disclose that when they are getting life or long term care insurance?  With the Accountable Care Act’s passage we are nearing the day when health insurers can’t exclude you for pre-existing conditions, but those other insurers have no such rules to follow.  Will it become customary for life insurance underwriters to demand Alzheimer’s and similar tests just like they do today to determine if you have high blood pressure or heart disease?  Yikes, this could get ugly.

Somewhere along the line someone is going to have to address this ethical dilemma or we will have a nation of healthy people with life and long-term care insurance and a legion of someday-you’re-gonna-get sick people without.  No safety net exists for that challenge like there sort of is for healthcare.   The Don’t Ask Don’t Tell rule was finally struck down in Congress this week as it applies to gays in the military, but it may be bound for resurrection as a rule to protect those who subject themselves to the new frontier of diagnostic testing for Alzheimer’s and other similarly expensive diseases.