Metaphorically Speaking

With more than 30 years of experience, my tenure as a genetic counselor is roughly equal to the age of  the average practicing genetic counselor. It is no exaggeration to say that I entered the field when many of today’s genetic counselors were still zygotes. A few years ago I ran into a patient whom I had counseled during her pregnancy 27 years ago who proudly informed me that the daughter she was pregnant with back then is now a genetic counselor.

Truth be told, I have reached  a point in my career where I question my relevance to the genetic counseling profession. I worry that the issues that concern and stimulate me are irrelevant to the current and future practice of genetic counseling, that I am stuck in a professional time warp where I am fighting yesterday’s battles and fretting about irrelevant ethical and clinical dilemmas. Maybe my work here is done.

Even more concerning is the possibility that younger patients may think that I cannot possibly understand their problems. They are at vastly different points in their life cycles than I. There is little overlap between our cultural reference points and we likely have distinctly different comfort levels with the technological advances of the last 3 decades. Who wants to be counseled by their father?

Photo courtesy of Lizzie Resta

Phone

VHS Tapes For VCR

When I first started out as a counselor, I fretted that I was so much younger than my patients that they would not take me seriously. Now I struggle with how to relate to a 30-year-old female BRCA mutation carrier trying to decide whether she should tell her fiancé about her carrier status, and if should she have a prophylactic mastectomy, which in her mind might render her an “unfit” mother because she would not be able to breast feed. My insecurity has come full circle. Sure, good counseling skills should make those differences irrelevant, but still…..

The potential generation gap between me and my younger patients surfaced recently when I met with a woman whom I had initially met with in the 1990s when she was pregnant and amniocentesis had revealed an apparently balanced de novo translocation.* Because of our past experience together she requested to meet with me again because of her subsequent personal and family history of cancer.

Before we started addressing her current situation she told me that she wanted to let me know how much she had appreciated the counseling I had provided during her pregnancy nearly two decades ago. What she had found particularly helpful was a metaphor I had used to help her grasp the concept of translocations. “Bob, you described chromosomes as essentially being a set of encyclopedias, genes were the words in the encyclopedias, and DNA was the alphabet used to spell the words. A balanced translocation was like a few chapters from Volume 10 had broken off and joined Volume 4, and vice versa. You couldn’t say for sure if a few words or letters were lost as a result of the translocation, but as far as the lab could tell, the encyclopedia had all of the necessary information, just rearranged. The light bulb went on in my head, and I was able to make a decision to continue that pregnancy.” I am not claiming that I broke new counseling ground with this explanation; I suspect that many genetic counselors use some version of it.

She continued “My husband and I liked that imagery so much that we used it when we finally decided to tell our teenage son about his translocation.” After they broke the news to their son about his genomic constitution, the patient said that her son silently contemplated what he had just been told. The parents held their collective breath, anticipating a complicated genetics question or a deep emotional response. Finally, he looked up and asked “An encyclopedia – is that anything like Wikipedia?”

Well, I thought, I wasn’t just being paranoid about my relevance to genetic counseling. Even my Genetics-To-English Dictionary is obsolete. I really do need to think about packing it in as a counselor and taking an administrative position with no patient contact.

Rare First Edition of the Genetics To English Dictionary

After I recovered from that shock, I got to thinking more clearly about their son’s statement. Hey, I thought, maybe I could update my Genetics-To-English Dictionary and appropriate the Wikipedia metaphor to my current work in hereditary cancer. Wikipedia is essentially the genome. It contains a lot of information, but some of that information is inaccurate and needs to be corrected and updated, much as DNA can acquire mutations and needs to be repaired. Mismatch repair proteins, the culprits in Lynch syndrome, are like the anonymous editors who vigilantly proofread Wikipedia, reporting and correcting typos to restore the integrity of the information. When the mismatch repair protein genes are mutated, the proofreaders are less accurate, DNA damage accumulates in the cell and eventually leads to cancer. In Lynch syndrome, the proofreader has a hereditary dyslexia.

Perhaps there still is some hope for me as a genetic counselor. But first I have to figure out how to stop my stupidphone from making that awful chirping sound. At precisely 3:12. AM. Every morning.

* – Some clinical details of this scenario have been changed to maintain confidentiality.

7 Comments

Filed under Robert Resta

7 responses to “Metaphorically Speaking

  1. Jon Weil

    Bob,
    As you know, my wife has early stage Alzheimer’s disease. Recently, at lunch with a therapist friend and colleague I said (it just occurred to me then): “I’ve emphasized ethnocultural issues throughout my career in genetic counseling, but dealing with [my wife]’s dementia is the most difficult cross-cultural experience I’ve ever had.”
    We hurt, we grow, and we find new metaphors as part of the coping process.
    Jon

  2. Robert Resta

    Jon

    Hopefully the growth never stops, even if it makes us uncomfortable. Or maybe we only grow when we become uncomfortable. It would probably help if there was an Alzheimer’s-To-English dictionary to guide you through that cross-cultural experience.

  3. Katie Stoll

    Do you think this could be a post lifetime achievement award hangover, Bob? I know I am not alone in my opinion that you are one of the most relevant voices in our profession. We need your wisdom and insights to carry us through this dynamic time. Things are changing rapidly, and perhaps you need to update some of your analogies, but we need your thoughtful perspective now more than ever.

  4. Susan

    I look forward to your insightful writings, Bob. But this one left me scratching my head. I’m hoping that maybe your musings are secondary to a post-holiday slump; although probably written well-before the holidays.

    So, if I hear you correctly, older people are irrelevant in their professions because they are older than most of their clients or co-workers? Hmmmm. Would you say that about physicians, too? You can’t put a dollar-figure on good clinical experience and life experience, and many people are reassured to be interacting with a seasoned pro in a variety of walks of life.

    I believe that our patients are not looking to make friends with us on a level of identifying with us personally, but rather look to us for our clinical experience, professional wisdom and empathy. When we can sincerely communicate that we understand the complexity and the utter weight of some of the decisions they have to make, our patients seem somehow, to visibly relax. Empathic relating can come at any age, but it’s more like to come after we’ve experienced some of the hard knocks of life and have been humbled and softened by these experiences.

    I do not want to invalidate your feelings…they are yours, and that is terribly important. I suppose that I don’t understand why you seem to feel that maybe you should stop interacting with patients secondary to all of your fabulous experience and wisdom. If you’re feeling an internal signal to do something else that you WANT to do, that’s great. But I’m perplexed by the notion that you somehow feel that you HAVE to make a change because you have too much experience or are too old? Really?

    Some higher administrative powers in many institutions can start planting these “baobabs” of doubt within us in some misguided attempt to either try to make us feel grateful for having a job, keep us intentionally off-balance, or perpetuate the notion that the old guard has to move away to let the young guard flourish (read: younger workforce is a less expensive work force). I believe that there is room enough for both. Not only room for both, but a NEED for both. We older crustaceans mentor and guide. The younger pros help keep us on our toes and learn new things. We need each other.

    Regardless of age, I think that the most important thing is to be able to connect with our patients. It’s about the ability to relate, establish a rapport, and provide understandable information. And to show our humanity at a time when people are feeling vulnerable. Some people may learn acquire the ability to assimilate this at a younger age; some people never learn it.

    I hope you’ll give some thought to re-assessing your position, if indeed, what you wrote really is your position, and not a balloon floated to rile us up and chime in.

  5. Robert Resta

    Susan

    One of the great things about writing this blog is when readers take the time to share their thoughts. And I love the different takes that readers have on what we say. They often provide a perspective that I could not see.

    The impetus behind this particular posting was to acknowledge that just about all of us engaged in genetic counseling have moments of insecurity or a crisis of confidence. Sometimes it’s sparked by a particular kind of patient encounter, or an emotionally unanticipated response from a patient, or some situation that challenges us professionally. We learn to recover from these, and, if we are wise and mature enough, grow from them. In this particular posting, I tried to communicate that I was still able to grow in one small but meaningful way – to think about old metaphors and apply them in new ways so that they are cognitively meaningful to younger patients. In other words, while I may be – as Jon Weil suggested above – culturally out of sync with younger patients, I am still able to adapt to a changing world (Of course, if I did not know what Wikipedia was, then I know it would really be time to sign off).

    It was also a funny moment, one that resonated with my patient and with me.

  6. Sarah

    I’m one of these zygotes that is now a genetic counsellor- having just turned 30 in october. Funnily enough I use the encyclopedia metaphor a lot, and recently ran into the same encyclopedia/ wikipedia problem! I had to laugh at how quickly things change. I find this article really comforting- knowing that everyone has their moments of insecurity, even the great Bob Resta!

  7. With young(er) patients I almost always use the Lynch metaphor now of “autocorrect” on smartphones…. A mismatch repair defect results in autocorrect gone WILD! Unfortunately if I float that idea to patients *sans* smartphones…. I get the “deer in headlights” look and we have a communication impasse.

    I enjoy your blog immensely, as I have always enjoyed your publications and public speaking. (And I’m neither old nor new in the field, having graduated in 2002) Thanks for all you do.

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