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Don’t Tell, Don’t Ask

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.

Lisa Suennen is a managing member of Psilos Group, co-headquartered in the Bay Area and New York City, The firm has funded and developed more than 38 innovative companies, including ActiveHealth, AngioScore, Click4Care, Definity Health, ExtendHealth and OmniGuide. Lisa regularly writes on her blog, Venture Valkyrie.

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plastic surgery in polandGlobalhospitalsMGCasey QuinlanDean Heckle Hill Agency Recent comment authors
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Guest

I am impressed with this article.

DeterminedMD
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DeterminedMD

Sorry I do not have the specific link, but go to http://www.psychiatrictimes.com and find Allen Frances, MD’s November 2010 commentary “New Guidelines for Diagnosing Alzheimer’s” and read it if you are interested in this post. Two comments I will echo: “The attempt to provide early identification with fallible tests and no effective treatment serves no useful purpose and can cause great harm not only to individuals, but also to public health policy. Scarce health dollars should not be wasted on what would amount to a frivolous public health experiment. First, let’s do the research necessary to prove that the tests… Read more »

Globalhospitals
Guest

Good Attempt , Health Care surely need a great attention 🙂

MG
Guest
MG

What exactly is the specificity and sensitivity of this diagnostic test?

Casey Quinlan
Guest

The family impact of any long term degenerative disease is immense. What about someone who has no family network? How do they decide whether to know or not know what the future holds for them, medically?
Diagnostic and predictive technology is wonderful, but without any meaningful treatment, my guess is that my medical-disaster-gram planning (12 gauge shotgun, a bottle of Rebel Yell, and a trip to the woods) will be more effective than anything else I can come up with…

Dean Heckle Hill Agency
Guest

Great information in this article. Health care defiantly needs some attention!

Lisa Suennen
Guest

Very good point that someone up there made on the family dynamics and I did miss that issue. I guess the trade-off is the impact on the individual vs. the family and whether the individual at risk is able to process the information in a manner that helps them productively work with the family towards a more effective outcome. Lisa

george lundberg
Guest

Thank you for your insightful article.
I wrote/spoke about this back in August 2010 after a flurry of related news reports. I described how the AMMM..the American Medical Marketing Machine is likely to work.
Click to http://www.medpagetoday.com/Columns/21690
to read/watch/listen. No registration required.

Tim
Guest

This is always the danger where medical tests are conducted, without the possibility of any meaningful cure.
I do think that, unless compelled by insurers to take the test, the majority of patients opting for the test will, like myself, have some evidence in the family suggesting a predisposition towards Alzheimer’s.
I’ve never taken any tests, nor considered doing so, as I can see no real benefit to doing so. It is, however, surely true that once you know the results you cannot help but be affected by that knowledge.
It is how we react to that knowledge that really counts.

Anon
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Anon

I notice you missed a crucial thing here–the FAMILY. If you know your older relative will probably end up with Alzheimer’s, it completely changes the family’s ability to cope with the challenge. They suddenly have the option of realistically planning for it. This is in contrast to the panic that sets in when you’re in a situation where you are watching the elderly person deteriorate and trying to figure out what’s going on–or worse, fighting through the elderly person’s total denial of their situation. If you expect your mother will have Alzheimer’s, maybe you adjust your life so you don’t… Read more »

DeterminedMD
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DeterminedMD

Quite the commentary, eh? Our species has a time frame of existence, but cultures like ours don’t want to respect those boundaries, and now comes the consequences. And you supporters of the Affordability Care Act think this legislation will budget care for dementia?
Think again.