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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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11 replies »

  1. 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 have clinical utility and to find medications that work. Then the guidleines will make sense.” and also
    “But such naive goodwill [experts that act from naive good faith] does not permeate the corporations that market drugs and diagnostic tests. There will be an explosion of testing and treatment if these guidelines are approved, much (or all) of it unnecessary and expensive, some of it downright harmful. The medical/industrial complex will have another field day at the expense of medical and policy common sense.”
    Not only well said on Dr Frances’ part, but, as other commenters have noted above, who is really paying the costs for this illness in the end, and I am not talking just about money. Expenses in most endeavors in life are also about time and energy, spent by the caregivers and invested family/friends, and as one person pointed out to me recently, add spiritual and faith too, although to me energy has various facets that would include those two additions.
    Dementia is an illness that defines the adage “a fate worse than death.” Again, not a comment advocating for euthanasia or other outside intrusive interventions, but, what are we really striving for to prolong illness? Is it really realistic to be searching for false promises to allegedly end a disease that is inherent to prolonged lifespans?
    The more things change, the more they stay the same. Have you seen “Logan’s Run”, a movie that is over 30 years old (how ironic if you know the movie)? If you haven’t, try to watch it, it may be illuminating about where cultures dare to tread. Thanks to the vile path laid down by government.
    Happy Holidays!

  2. 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…

  3. 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

  4. 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.

  5. 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 move away for that new job. Maybe you go so far as to have one kid fewer. Maybe you organize a neighborhood babysitting share so that when you do have one more kid, if mom is starting to deteriorate, three days a week you can take care of mom. Maybe you put money in some kind of special caregiving account–and if you’re really savvy and well connected, you start lobbying to make such an account tax-free! Maybe you get co-signing rights to checks or rights to oversight of all of dad’s financial accounts while he’s still compos mentis, so that you can monitor them and take them over when dad gets to the point where he can’t make good decisions and people start trying to rip him off. Maybe mom makes you or a friend she trusts eligible to share her medical records, so that her caregivers can plan with you and freely share her information with you.
    Maybe your brother in the middle of his renovation spends a little more to add on an extra room onto his house so mom can come live with them 5 years from now if things get bad. Maybe you start fitting dad’s house now with things like stove monitors that will call the fire department if he leaves the burners on.
    Maybe you start researching the disease now, so you learn what its progress looks like. You get on the internet and join a group. You talk to people and learn what they wish they’d known at the beginning, and what resources are available in your neighborhood or state.
    Alzheimer’s doesn’t just affect the person who has it–it affects entire families and social networks of friends!
    The idea that we should evaluate this based on what the patient does captures only a very small part of the picture.

  6. 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.

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