The Downside of Patient Empowerment

Downside of Patient Empowerment

“I could have had a mastectomy with reconstruction and skipped the part where I got cancer. I feel like the biggest idiot for not doing so.”

Those self-flagellating words made my heart scream like it was stabbed.

I read “The Breast Cancer Gene and Me” by Elizabeth Wurtzel in last Sunday’s New York Times Op-Ed Section. Here is someone who could not have reasonably known that she carried the BRAC gene and was at a relatively high risk of developing breast cancer.

Yet she berates herself for not having a prophylactic mastectomy.

Ms. Wurtzel understands that “the science is ahead of policy” in terms of health insurance coverage. Multiple studies show that as a woman of Ashkenazi descent, she has about a 10-fold higher chance of having the cancer causing BRAC gene. However, “most insurance companies cover testing specifically for Ashkenazi Jewish women only once [they] present with breast cancer.”

But despite being able to point to a flaw in our health care system, she blames herself.

BRAC gene

True, there is now a relatively inexpensive test that women can purchase from Color Genomics to see if they have this deadly gene.  But the most talked about risk factors for the BRAC gene did not point to her genetics as being particularly troublesome. When she found out she had breast cancer, Ms. Wurtzel says, “I caught it fast and I acted fast.”

But still she blames herself for not getting tested.

This despite the fact that testing does not make for black and white decision-making.  Certain BRAC gene mutations are responsible for a substantial fraction of hereditary breast cancers and ovarian cancers among women with Ashkenazi Jewish ancestry. However there are a myriad of BRAC mutations with no clear causal relationship.

Here is where paternalism rears its ugly head. Part of the excuse for not encouraging more BRAC testing is the fear of getting grey-zone results that can cause unremitting anguish for patients. But as Ms. Wurtzel makes clear, no matter how much pain is involved in agonizing over a health care decision, having cancer is worse.

Patient empowerment flag

 

I’ve been carrying the patient empowerment flag in my work as a health care communicator for over 25 years. Usually stories of medical paternalism make my heart race in anger. But the searing self-blame here made my heart stop in sadness.

What’s needed here is a little compassion. Much has been written about the power of physician compassion in health care.  There is far less about self-compassion in health care. Patients will need more self-compassion for the inevitable mistakes (or non-mistakes, in Ms. Wurtzel’s case) that will be made as they take the helm of their health care management.

So for those of us health communicators cheerfully prescribing patient empowerment to patients, it’s time to add a dose of self-compassion on the side.