Critiques and critics of genetic counseling often point out the subtle and not so subtle ways that genetic counselors could influence a patient’s decision-making process. Some suggest that genetic counselors consciously or unconsciously shade information to persuade patients toward terminating a pregnancy following prenatal diagnosis, or to reinforce a decision that a patient had already made so the patient can feel good about the decision. Others express concern that nondirective counseling will result in under-utilization of medically reasonable interventions, such as risk-reducing surgery in BRCA mutation carriers. Implicit in these discussions is the assumption that genetic counselors actually can influence patients’ decisions.
Unfortunately I am infected with The Skeptical Gremlin, an endogenous retrovirus (Diabolus intus) nestled in the DNA deep within my brain’s Center For Medical Ethics and Genetic Counseling Practice. Against my will this nefarious spirit tempts me to question my belief in the central tenets of the Holy Genetic Counseling Bible of Nondirectiveness, Autonomy, Empowerment, and Other Feel Good Principles. It’s like having a devil on one shoulder without the contralateral angel for counterbalance. Diabolus fecit, ut id faceremi!*
My unexpected (of course) Spanish Inquisition recently put me to the questions: “Do you really think you have that much influence over your patients’ decisions? Isn’t that a bit presumptive on your part?”
I confess that The Skeptical Gremlin could have a point, and not just because I
fear the strappado. It may be naïve, and dare I say plain old wrong, to assume that patients come to us with cognitive and emotional uncertainty that we skillfully resolve by providing unbiased encyclopedic information and utilizing acutely sensitive counseling techniques. A more realistic model might be that patients’ decisions are shaped by far more powerful influences – personal life history as well as familial, social, cultural, and economic factors far beyond the control of genetic counselors. Most patients have their minds made up even before they walk in our offices, or, at the least, their decisions are more likely to be shaped by factors outside of the clinic.
I can already hear your groans and criticisms:
- “My patients agonize endlessly over their decisions and almost plead with me to make the choice for them.”
- “I had a patient just the other day where I could see the light come on for them right there in my office, and they were able to finally make a decision about genetic testing for their child.”
- “Why, there was that couple who were dead-set on terminating their pregnancy, and lo and behold an hour later they had u-turned, and were at peace with continuing the pregnancy (‘Take that, ye critics who think we talk everyone into a termination!’).”
Undoubtedly we help some patients make decisions. More often though we may be deluding ourselves with our unconscious need to feel good about our jobs, and affirm that what we do amounts to more than a hill of beans in this crazy hard knock life.
Don’t get me wrong. I think that our jobs do matter and we can feel good about ourselves, but not in the ways that we believe.
Making an ethically, emotionally, and cognitively complicated decision in which there is no clear-cut right answer stresses the psyche. Just because a course of action is right does not mean that it is easy to be at peace with the decision. Patients may wind up discovering their darker sides, like what they really want their children to be like or what values are critical when life and family are on the line. In the complicated psychological interplay of counselor and counselee, patients may subtly project the burden and blame of their uncomfortable decisions onto us.
Perhaps then our job is not to help patients make decisions so much as it is to help them realize and acknowledge the decisions they have already made (sometimes at such a deeply subconscious level that they are unable to articulate the decision), explore why they are having a difficult time coming to grips with the decision, and then work with them to facilitate adaptation to their choice.
If this model is correct, that many patients have made decisions before they ever see us and that we can usually do little to change those decisions, then there are important implications for the practice of genetic counseling. How we conduct genetic counseling clearly requires counseling skills that need to be continually honed, critiqued, and expanded as well as developing an awareness of the external factors that shape decision-making. And how we evaluate the success of genetic counseling will become even more difficult.
This does not mean that patient education is unimportant, and, after all, genetic counseling is not always about decision-making. Still, patients usually expect a certain amount of information during a genetic counseling session, even though they typically forget half of it and unconsciously distort the rest to fit their world views. The patient who endlessly searches the Internet and seeks opinions from multiple sources may be looking for a rationale rather than an answer. Unless we explore how information matters for patients and families, how their values and beliefs give context to that information, and how it relates to the decision they have made (whether or not they are cognizant of that decision), we have not done our jobs.
I can offer no proof of concept, and I may very well be wrong. But this lens gives an interesting and different view on genetic counseling.
* – Loosely translated as “The devil made me do it!”