Huh?

Lecturing patients is a lousy genetic counseling strategy. It presumes that the genetic counselor has superior knowledge and the respectful patient will listen to our learned words to make a perfectly logical decision about whatever it is they are seeing us about. But people don’t work like that, and while you are busy lecturing patients they are thinking about what to make for dinner that night, noticing the food stain on your shirt, or wondering if you will ever stop that incessant droning. Wise counselors instead prefer to reciprocally engage with patients and work together in symbiotic harmony to help the patient arrive at a cognitively and emotionally sound choice about whether to undergo a test, share information with family, undergo risk-reducing surgery, or whatever else is a critical issue for them. Victory all around; good counseling leading to good patient outcomes, and everyone is content.

Okay, so maybe genetic counseling doesn’t play out like that all the time. But it is a noble goal towards which we strive, however imperfectly.

You try to do your best to respect patients’ values and choices. Nonetheless, you can feel like a failure when a patient makes what appears to be a ridiculous decision. We’ve all been there, in its many permutations. The 55 year old BRCA1 pathogenic variant carrier who declines a risk-reducing saplingo-oophorectomy after she has tearfully confessed her deep-seated fear of ovarian cancer. The patient with a cardiomyopathy who has spent the last 30 minutes explaining that he wants testing so his young adult children can manage their risks accordingly – and then declines testing because he “doesn’t want to burden them with the knowledge.” The 33 year old, a mother of two young children, with newly diagnosed triple negative breast cancer who chooses treatment with antioxidant supplements and dietary changes over chemotherapy. Makes you want to pull your hair out (although seeking professional supervision might be a more fruitful pathway than self-inflicted alopecia).

Your first reaction is shock and disbelief. Huh? Was that patient in the same room as me? Did she not hear anything at all about what we discussed? Is she an idiot? I know you are not supposed to think that your patient is an idiot but sometimes those thoughts sneak in unbidden before your professional filter has a chance to block them. Hopefully that filter will kick in before you actually call the patient an idiot.

Or you may get defensive about it. Come on, lady, I know that I did a good job with you in there. I listened to you, we explored your thoughts together, I checked in regularly to make sure that you understood the key medical issues and how they impact your life. I validated and respected your feelings. I had the same interaction with my previous patient and she chose to have the surgery. How can you not uphold your end of the contract?

Mostly, though, such reactions reflect our personal and clinical insecurities. Any reflective counselor will – and should – have a healthy dose of insecurity and humility. Such seemingly outlandish decisions can be perceived as a threat to your professional ego and competence. What did I do wrong? Obi-Wan Counselor, my role model, would have handled this so much better. If she counseled her, that patient would definitely have chosen risk-reducing surgery. I am so incompetent. But I got news for you – there’s a darn good chance that Yoda-like role models still have many moments just like this. Perfect counselor no one is.

There could be several factors underlying what appears to be poor patient choices. Patients may be grappling with emotionally and technically complicated information that they just haven’t worked through yet and just choose something, anything, to get on with their lives for now. There may be a deeper psychological issue subconsciously driving patient choices, such as dealing with the long ago death of a loved one, confronting one’s own mortality, or fears of medical procedures because, when it comes down to it, who wants to be cut open. The expertise of a more skilled therapist may be required to address the situation.

Also, let’s face it, sometimes people just make dumb decisions, no matter how smart and psychologically together they are and how good your counseling skills are. We all do, at various times. Driving a car after wine and drinks with dinner, engaging in a flirtation or an affair when you are in a committed relationship, smoking cigarettes, crossing the street unsafely, spending money for an 18th pair of shoes when budgets are tight. There’s nothing too bright about any of those behaviors, although you have to be careful if you try to point out that a decision may not seem particularly good. It could alienate the patient, if not done just right. But I would argue that we all have a right to make what seem to be dumbass decisions.

Consider too that it is virtually impossible for anyone to know what will turn out to be a good decision. Any choice that tries to anticipate the future is so inherently complicated and filled with uncertainty that what seemed like a good idea at the time may eventually turn out to be an awful choice, and vice versa. All kinds of unanticipated outcomes or unknowable problems can arise. Serious complications might develop after risk-reducing surgery. Your beliefs, spirituality, perspective, and values may evolve over time. You had sworn off children and then you fall head over heels in love with someone and all of a sudden you want to start a family. You have a test for the sake of your family and then your family decides they really didn’t want the information and wish you hadn’t done it. You spend half your life worried about colon cancer and then you’re a victim of a pandemic. No one knows how the Cosmic Vanna White will spin her Rota Fortunae.

Rota Fortunae - Wikipedia

There’s no cookbook genetic counseling recipe that magically transforms people into rational and emotionally consistent decision makers. People are people in all their splendidly glorious contradictions and sometimes they are gonna’ do what they are gonna’ do. Sometimes we can guide them and sometimes we can’t. And sometimes, even when they don’t know it, they know what they are doing. Or they learn to live with their choices. That’s life and we can’t deny it.

2 Comments

Filed under Robert Resta

2 responses to “Huh?

  1. Kathryn Spitzer Kim

    Once again you’ve hit the nail on the head. Thank you

  2. Great reminder (or perhaps lesson, for those who don’t already realize this) that a) it’s the patient’s decision even if it doesn’t make sense to us, and b) they know themselves better than we know them. And it won’t always sit well. And that’s part of the deal 🙂

    I’ve been on the patient side of this too, not in genetics but in another specialty where I turned down a treatment my MD thought would be beneficial (took us a long time to see eye-to-eye about my decision..).

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