Who Wants To Know?

Last week’s New England Journal of Medicine reports on a study of 162 people with one parent affected by Alzheimer’s disease. Half the study participants were told the results of genetics testing that indicates a person’s risk of developing Alzheimer’s disease, and the other half were not told the results. People with depression or intellectual difficulties were excluded from the study. 

After one year of follow-up there was no difference in anxiety or depression scores between the two groups. One interpretation of this study is that it doesn’t hurt people to know they are at risk for developing Alzheimer’s disease.

That may or may not be the case – only the most solid citizens were allowed to remain in the study – but I still don’t see the point in looking for potential Alzheimer victims before any symptoms develop.

Both doctors and patients in this country seem to have an insatiable thirst for information, even when there is not yet an understanding of how to use it.

One of my professors in medical school proclaimed something that has echoed in my head through my years of practice: “Don’t order the test if the result won’t change your treatment.”

Until we have an effective treatment for early Alzheimer’s disease, testing asymptomatic individuals just doesn’t make any sense to me. It clutters our minds with unnecessary worries and may prevent us from taking full advantage of the remaining days of our lives.

Who wants to know that a dreadful and unrelentingly progressive disease will rob them of their faculties? The New England Journal study may have proven that some of us can handle that kind of information, but why should we have to? What should we do with it?

I am reminded of a story about a man, who tries to escape his destiny, as told by W. Somerset Maugham and John O’Hara – “Appointment in Samarra”, quoted here from another blog:

A rich man sends a servant to the marketplace to buy provisions, but instead, he returns pale and trembling. “Master,” he says, “I saw Death in the marketplace, and he looked at me a long time, with a strange expression on his face. I am so afraid. Please, can I take a horse and go visit my relatives in Samarra?”
The master lets him go—he has been a good servant, and now he is so shaken that he wouldn’t be able to do much anyway. Off the servant gallops toward Samarra.
Then the rich man goes to the marketplace to see if there is any truth to what his servant said. Sure enough, there is Death, waiting in the shadows and watching.
The rich man comes to him and says, “O Death, my servant says that when he came here, you looked at him very strangely, for a long time. Is this true?
 “Yes,” says Death, “but only because he was here. I have an appointment with him tomorrow in Samarra.”

3 Responses to “Who Wants To Know?”

  1. 1 cathy July 29, 2009 at 5:30 am

    My mom had early onset ALZ. Began in her late 50s. It was horrible the last few years she was alive. I was her caregiver for almost a dozen years. I am now in my late 50s and at times I think I want to be checked for this disease. but, I don’t think I need to be. I am almost certain i am showing signs of Alz. I can’t concentrate for long periods of time. I forget things way to much. I get lost driving in the town, and on the streets, I have lived in for 57 years. So, what would I do different if I knew for sure? Worry and make myself sick over it? I already do that sometimes.

  2. 2 Steph August 7, 2009 at 6:15 am

    I wouldn’t want to know…

    Life’s far too precious to waste time worrying about something over which I’ve no control. Both my parents (in their 80’s) are living proof that Alzheimer’s disease isn’t all bad. Yes, I admit, the parenting role has changed but we’re closer for it and for that alone, I’ll always be thankful.

  3. 3 michelle September 3, 2009 at 10:47 pm

    But I think that the point here is that it all goes back to your relationship with your patient. One patient may become horribly depressed and non-functional or suicidal but, the next patient might say ‘thankyou doc’ leave your office, walk down mainstreet to the lawyer, make their will and advanced directives, go down a little further and start a new relationship with the local travel agent or their God or an estranged family member or friend.

    I totally agree with “Don’t do a test if it doesn’t change your treatment.” But the way we live our lives is a little bit more complex than all that.

    Communication of bad news is always difficult and there is never a level of complete comfort achieved with such. However now as the poster points out we also have the difficulties of communication of the possibility of bad news, personally I think that might be scarier as a patient and a health care provider (namely, What does it mean to me as a pt? What do I do with this knowledge as a doc?)

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Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.


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