Tag Archives: psychosocial

What Do We Mean By “Psychosocial” in Genetic Counseling?

Genetic counselors are proud of the psychosocial component that we claim to bring to patient care. Hey, we’re not just programmed human chat boxes, clever information-givers, or educators. We attend to the emotional and psychological needs of our patients and strive to transform our sessions into something closer to a psychoeducational experience, sometimes with psychotherapeutic effects. All that “psycho-” is what transforms genetic counseling from a cold clinical encounter into a humanistic endeavor.

Hence many readers may be upset when I suggest that we retire the sacred word “psychosocial” from our vocabulary. This bug was put in my ear by my esteemed colleagues Barb Biesecker, who has enough publications to fill 3 careers; Jehannine Austin, a world leader in psychiatric genetic counseling; and Laura Hercher, Renaissance woman and host of the genetics podcast The Beagle Has Landed.  I am authoring a chapter for their soon-to-be-published book (Genetic Counseling: Clinical Practice and Ethical Considerations, in the Cold Spring Harbor Laboratory monograph series Topics in Medicine). When I submitted my chapter they asked me to remove the word psychosocial from the text. Similarly, Barb Biesecker, Kathy Peters, and I are co-authoring a genetic counseling textbook to be published this Fall by Oxford University Press (Advanced Genetic Counseling: Theory and Practice), and “psychosocial” was dropped from that text too, unless my Find and Replace function missed a few instances.

It’s not that I or they think that genetic counseling shouldn’t have a psychological component. On the contrary, I and they think it is a defining element of our profession, even if in practice genetic counseling may be “less psychosocial” than we say it is. The point of contention is that “psychosocial” is too imprecise a term to be meaningful in a research or outcomes kind of way in the context of modern genetic counseling.

The term “psychosocial” arose in the social work profession in the early 1940s and is usually attributed to Gordon Hamilton, an influential Columbia University social worker. The aims of the psychosocial approach in social work are to “restore, maintain, and enhance the personal and social functioning of individuals through mobilizing strengths; supporting coping capacities; building self-esteem; modifying dysfunctional patterns of thinking, feeling, and relating to others; linking people to necessary resources; and alleviating environmental stressors.” You can see how this fits with what genetic counselors claim to do.

Historically speaking, it was natural for the fledgling field of genetic counseling to borrow some of its vocabulary from social work. Sheldon Reed famously and vaguely defined genetic counseling as “a form of genetic social work.” Joan Marks who, along with Melissa Richter, established the first genetic counseling training program at Sarah Lawrence College in 1969, was a social worker and perhaps this is where the term reflexively entered into the genetic counseling lexicon. Particularly during the first two decades of the profession, not a few genetic counselors were social workers (In my younger years, when there were far fewer genetic counselors, I was professionally acquainted with at least five social workers, two of whom helped train me). The psychosocial approach helped give genetic counselors a raison d’être that set us apart from clinical geneticists and provided a focus to our training and the care that we provide. The psychosocial paradigm in genetic counseling is embodied in Jon Weil’s 2000 classic text Psychosocial Genetic Counseling (Jon, by the way, was a psychotherapist, not a social worker).

But those were the early days when we provided a limited service to a narrow segment of the patient population. The psychosocial component  gave us a leg to stand on but now it seems like more 0f a crutch. At a half century old, genetic counseling can no longer be considered a new profession. The average age of its practitioners is much less than the age of the profession itself. Genetic counseling is now better characterized as a mature specialty. It’s about time we stood on our own two feet. I celebrate the outstanding work done by social workers but genetic counselor are not social workers, and vice versa.

Deep down, the fuzziness of the term has always made me uneasy. And let me tell you, Barb and Jehannine, two of the most passionate genetic counselors I have ever met, have far stronger criticisms of “psychosocial” than just its fuzzy qualities. Although a dictionary will provide a definition, in the setting of genetic counseling its unstated meaning is something like “those components of a genetic counseling session that are not strictly educational or technical.” It tells us nothing about assessing the effectiveness of the components or outcomes of genetic counseling; or how to improve them; or how to develop a scientific foundation for teaching, applying and researching genetic counseling; or how we can contribute to basic research into the human mind and behavior. For decades, genetic counselors were very poor at demonstrating their utility or effectiveness or at investigating those aspects of our service that were beneficial, harmful, or useless to patients (except in the Netherlands, which has consistently produced some of the best genetic counseling research, and a few other select researchers). This may have been in part due to the imprecision of the term “psychosocial.” That needs to change.

No doubt many of the good readers of The DNA Exchange will be angered, upset, and confused about the proposal to drop psychosocial from our vocabulary. And just plain disagree. Well, good. That’s one of the reasons I write this stuff. I want us to get worked up about genetic counseling, think hard about it, question its very core, and engage each other collegially. Those are the sorts of reactions we should have if we are as passionate about genetic counseling as Barb and Jehannine are and if we want to deliver the best possible patient care.

 

20 Comments

Filed under Robert Resta

Can You Feel Anything When I Do This?

Despite 26 years as a genetic counselor, people are often a mystery to me. Here I present a vignette that explores my inner thoughts and insecurities that can arise during a counseling session. It is drawn from no one specific patient. It may not be real but it is true.

***

“Have your doctors told you much about what I do or why genetic testing may be helpful?”

 

Playing her emotions close to the vest, eyes unreadable, a near-smile frozen on the face. She looks like she is posing for a photo she doesn’t really want to be in. Mastectomy, lots of chemotherapy; this isn’t going to be a walk in the park. She’s got to be feeling something.

***

What does she do for a living? Corporate VP with an international finance company. I wouldn’t understand her job even if she explained it to me. Every week she probably makes multi-million dollar decisions without so much as a second thought. But cancer is one situation you can’t control with a spreadsheet. Is it too early to reach into my bag of counseling tricks? Emotions are a tight rope. Wrong step at the wrong time, and the session goes into free-fall, with no safety net below. Maybe she thinks this is a waste of her time and just wants to get her blood drawn and get on with it already. Or maybe all those specialists scared the bejeezuz out of her, with their slick clinical lingo and impressive statistics. I sound just like them with my talk of oophorectomy and cancer risks. Who can grasp the real meaning of a lifetime risk anyway? Maybe I need to switch gears.

“You’ve met with lots of specialists this week. I bet you’ve heard more information than you bargained for.”

Well, she stopped taking notes. Maybe I can work her family into that opening.

“Have you shared any of this information with your daughters?”

A solitary tear, held in place by sheer will. Okay, now where do I go with this?

 

Short pause, then she replies “Tell me again the chance of this cancer coming back.”

She stopped that tear dead in its duct. She’s more comfortable when I play Medical Expert. Not quite ready to let the emotions spill over the dam, but it’s a start. I can play along with being The Great Authority for a while. She could be sizing me up to see if I am smart enough to earn her confidence and respect; nothing wrong with that.

***

“You know, you’re going to live, and probably for a long time. It will be rough going for a while, but you will come out the other side. You have good doctors and a great family. And I am guessing that you are tougher than your cancer.”

A hint of a smile, then a long pause. She’s struggling with this, not quite sure what to make of it. I hope I didn’t blow it.

 

“Will my insurance company cover the test? I forgot to call and check.”

That fell flat. I may as well just go along with answering her questions. Maybe it allows her some sense of control.

***

60 minutes, session over, and I am still unable to figure her out or if I did much good for her. She pauses at the door, and half turns to face me, tears starting to undo the make-up.

 

“Thank you,” she says quietly, ”You were very kind.”

Then she is gone.

7 Comments

Filed under Robert Resta