Too Early or Timely Diagnosis

I went to a thought provoking series of talks about dementia the other day.

One of the first PowerPoint slides listed “Early Diagnosis” as being important.

Having watched my father in his final days of end stage Alzheimer’s disease seven years ago, I have no sympathy for screening the general population for this gruesome disease. Why would anybody in their right mind want to know that such is the fate that awaits them?

If you have no symptoms, and if you are enjoying your family, career, community and intellect, could you still appreciate whatever time you have left on this planet if someone told you that you are doomed to die emaciated, nonverbal, incontinent, immobile and contracted?

Screening for incurable and essentially untreatable conditions is only cruel and meaningless, I challenged the speaker.

She clarified her viewpoint by saying that she didn’t mean to make the diagnosis as early as possible, but rather in a timely way so that patients and families can start making decisions.

Thinking back to my own practice, I know that I have perhaps not always called a spade a spade by spelling out the diagnosis of dementia and putting it on the problem list until late in the course of the disease. I can see that it is my obligation to do that when symptoms are only beginning to threaten a person’s judgment and abilities. Making sure Advance Directives are in place is important, and a couple with one spouse showing signs of mild dementia probably shouldn’t buy a two story home far away from public transportation. The speaker also advised estate planning and considering options to pay or qualify for aid for long term care.

Another topic was driving, a situation where I certainly have been the non-family bearer of bad news many times (see my post “A Very Careful Driver”).

So, I did mellow in my resistance to labeling patients with dementia before they become debilitated.

In the same vein, what keeps me from putting other emotionally loaded labels on the problem list, such as:

F10.20 – Alcohol dependence, uncomplicated
Z72.53 – High risk bisexual behavior
F52.22 – Disorder of sexual arousal, female
N52.9 – Erectile dysfunction

One thing is the patient’s overall perception of privacy when the (mandatory) visit summary contains a loaded diagnosis. Specifically, in a very small community, there is the possible concern that staff members without direct clinical involvement (front desk staff) may see such diagnoses. And, perhaps most importantly, with health care law changes in our country’s future, concerns about future uninsurability.

Because making a diagnosis isn’t just a matter between me and my patient anymore.

2 Responses to “Too Early or Timely Diagnosis”

  1. 1 acountrydoctorwrites November 12, 2017 at 11:53 am

    DrSharon emailed this comment:

    Dear Doctor
    1. your blog is one of the few that I subscribe to and read on a regular basis
    2. I am not sure that my “reply” to your recent column went through.. after hitting “comment,” I was directed to a wordpress sign on page. I copy and send comments by email

    As a physician who is living with an 83 year old father who is experiencing “memory loss,” I am in favor of delaying the attachment of dementia diagnosis. Not only because of lack of privacy but because attaching the diagnosis too early may not serve the well-being of the patient. Last year mom and I accompanied dad to visit his doctor to express our concerns about failing memory.

    Dad’s doctor did a BRILLIANT job of managing family while respecting my dad’s dignity; ordered tests to r/o reversible causes of dementia; and made the same lifestyle and medication adjustment recommendations that I had suggested. (Obviously his doctor is a brilliant clinician :o)

    For dad, former professor and brilliant scientist, attaching the words memory loss rather than dementia has had some mental and emotional health benefits. Over the last 6 months that he has begun to joke with others and even claim dementia when words and memories disappear.

  2. 2 Mary Symmes November 12, 2017 at 8:23 pm

    Your post is another example of your wisdom and humanity. Several events at the beginning of last summer led me to wonder if I had beginning dementia, and the weeks of waiting until I got the all-clear were grim. I couldn’t accept such a diagnosis, especially having watched elderly relatives die of dementia in recent years. On the other hand, I would want to know while still somewhat capable so that I could take necessary steps.

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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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