I am ashamed to admit that despite 29 years as a genetic counselor I have shockingly little in the way of great insights to pass on to colleagues. I have not developed cohesive counseling theories to guide the practice of genetic counseling, and patients remain enigmatic to me (and never seem to behave the way they do in textbooks or journal articles). Perhaps that is why I have shied away from involvement with genetic counseling students and training programs. After about 30 minutes, I fear I would run out of helpful things to say. Often the best advice I can offer to a counselor who asks about how to handle a difficult session is I don’t know. Just go in there and talk to them and see what happens.
But I have managed to pick up a few small practical counseling tricks along the way. They will not cause you to re-think the underlying philosophy and ethics of your practice, but they can make your workday slightly more efficient and less stressful. They may be frightfully obvious to many genetic counselors, but hopefully at least one of them will induce an Aha! moment.
Helpful Tip-let #1: The Awkward Death Slash – With every pedigree, you must repeatedly ask the sensitive question “Is your (name that relative) alive?” If the patient answers No, in full view of the patient you mark that relative’s icon with a backslash to indicate that the family member is deceased. The act of slashing the icon can symbolically evoke sadness and other emotions surrounding the death of a parent, grandparent, or – oh so painful – child. It is an awkward moment at best. While a patients’ reactions can provide an opportunity to explore their emotional landscapes, you do not want to unintentionally cause sorrow with a thoughtless gesture. There is already enough sorrow in genetic counseling; we do not need to compound it.
Distracted Gaze.
Photo courtesy of Liane Abrams.
For permissions and information, contact Lia Photography (925) 768-0006
A simple way around this sensitive situation is to ask the age at which the relative died. Patients often have to think for a moment about the answer, and almost inevitably briefly look away from you and stare off into the distance as they try to recall the age of their relative. In the moment that their eyes shift focus, you can discreetly mark the icon with a slash (have your pen poised just above the icon so you do not even have to look down to draw the mark). If the patient recalls the age without shifting her gaze away from you then ask the year of the relative’s death or birth. This will usually re-direct the focal point of the patient’s gaze.
I am amazed at how often this technique works.
Helpful Tip-let #2: The Pedigree Template – I don’t know how many family histories I had taken before I realized that virtually every pedigree has three invariant components: a proband, the proband’s parents, and the proband’s grandparents. Therefore, there are essentially 3 near-universal pedigree templates (except maybe if you are working in ART):
1) A female proband
2) A male proband
3) A pregnant patient
Print one of these templates on the form you use for drawing pedigrees, and voilá, you have at least 7 fewer symbols (4 grandparents, 2 parents, the proband) and 6 fewer lines (3 mating lines, 3 lines of descent) to draw with every pedigree. I prepare the templates by hand and then make a bunch of photocopies of each template. If you use a pedigree drawing app, simply create and save the 3 templates, and then use the appropriate template for the patient at hand.
It can save you a few moments per patient, and over the course of a week that can add up to a nice little chunk of time. And somehow, from a workflow standpoint, it is psychologically easier to draw a pedigree if some of the routine work is done before you start.
Helpful Tip-let #3: A (Non)Capital Idea – This tip-let is for genetic counselors who order BRCA testing. Myriad transmits test results using a secure web portal called ResultsNow. To view the results, the user logs-in at the familiar screen:
Entering your email address (Hmm… is that my work email or my private email?), your password (which changes every few months), and then the CAPTCHA code unique to each login can lead to frustrating typos (random letter/number combinations are more difficult to type than patterned combinations). The log-in is made none the easier when the letters and numbers of the CAPTCHA code are obscured by the background coloring, leading to the potential for even more mistaken keystrokes.
Although I cannot eliminate all of the typo potential, it helps to know that you do not have to type the CAPTCHA letters in CAPS! Having one less detail to attend to will increase your keystroke accuracy. A small thing, to be sure, but it does make the process that much less frustrating.
By the way, I am convinced that CAPTCHA codes contain hidden messages that reveal Secrets From The Great Beyond. In fact, the two ResultsNow messages that I received at the end of the day on March 12 included DVLS and MEN in the CAPTCHA codes, which I interpreted as an omen that the Duke Blue Devils and the Syracuse Orange would be the final two teams left playing in the NCAA Men’s Hoops Tournament.
Apparently the Great Beyond has a hard time with bracket picks too. Lehigh!? LEHIGH?!? ResultsNot is more like it.
Tip-lets do not seem to have enough gravitas to warrant a publication or AEC presentation. Nonetheless, they are an important part of our workday duties. It is rare that we get an opportunity to share this kind of information with each other. In the Comments below, tell us about your tip-lets (about genetic counseling, not about your system for picking winners of NCAA tournaments).
Gambling Chips.
Photo Courtesy of Liane Abrams.
For permissions and information, contact Lia Photography (925) 768-0006
The DNA Exchange 
Bob,
You are a man of many talents– and apparently bracketology is not one of them. Did you not know that Syracuse was missing Fab Melo? And Duke? Not their year. Also, I would like to do an instant poll asking how many people believe that Bob would out of things to say after 30 minutes. Or, an hour. Or, ever. Jus’ saying. 🙂
Robert,
Thank you SO much for the helpful tip on handling the awkward “death slash”. It is far more subtle than my technique:
ME: What the heck is THAT? [pointing to the corner of my office]
STARTLED PATIENT: What? WHAT?
[death slash]
ME [ a la Wallace Shawn]: I could swear I saw something. Anyway…
Also, something I have learned from many years of study in cancer genetics. Never, ever, under any circumstances should you—-upon listening to a patient’s description of the dire situation in their loved one—-use the “anticipatory death slash”.
I know it is not standard (GASP), but I am in the habit of marking the outside corners of the deceased relative (leaving the center of the slash out of the center of the symbol). So far, no one has reacted with grief the way they did in training to their relative being “slashed.” Once it is a habit, it takes just as long to draw as a full slash.
Too funny, I have the same problem with filling in the symbols, making them all black for family members with lung cancer in our genetic lung study! It feels like I am giving them all the “black plague” and can not bring myself to do that in front of lung cancer patients in the clinic! My work-around is to write the word Lung inside the symbol and color it in later when I’m alone with my paperwork; even then, it feels wrong.
Better still is the suicide double slash, particularly after the patient has seen that the other dead people get the single slash. That’s definitely a moment to use some sleight of hand distraction technique.
My technique – wait until I’ve moved on to other parts of the pedigree and go back to fill in the death slash when they are pondering where their ancestors are from.