I have struggled to come up with a label for the malpractice of leaving extra tissue on a mastectomy patient’s chest against her consent.  Labels matter – it’s hard to speak about an experience if you don’t have verbiage to describe it.  My friend Amanda has a dark sense of humor, and calls the awful surgical result that many patients are being left with, “a Bernard,” after the surgeon who did this to me personally in 2017, Steven Bernard at Cleveland Clinic.

“Please, doc, don’t leave me with a Bernard.  I don’t need any extra skin on there, take it all off.” – Amanda Newill

Leaving a patient with “a Bernard” against their consent is malpractice, it’s butchery by omission, it’s consent trampling/steamrolling… it’s all of these things, but it’s more specific than that.  If you have any ideas, please, contribute in the comments below. For now, I’m calling it “Flat Denial.”  It’s a denial of the patient’s carefully considered decision and a denial of their bodily autonomy.  It’s the denial of a reasonably flat result that was agreed upon by both parties before the victim was rendered unconscious and unable to protect herself, by a surgeon who either couldn’t do it right, or wouldn’t do it right.

Catherine Guthrie, in working on her article for Cosmopolitan Magazine online, used the term “flat refusal” which probably morphed in my mind, to flat denial. DENIED!

I’d like to address the paternalism and consent trampling of flat denial, head-on, from a patient’s perspective.  Oh yes, I’m angry. I’m also, unfortunately, far from alone. Every day, more and more women are coming forward and telling their stories of flat denial.  We have been publishing some of these stories on the page here. If you have a story you’d like to share, including as much or as little detail and imagery as you like, please email me at NotPuttingonaShirt@gmail.com

Let’s be clear about the facts: operating on a surgical patient for whom you have not obtained informed consent, unless it is an emergency situation (which mastectomies are not), is malpractice.  When a mastectomy patient wakes up to a result that shocks and horrifies them; when they feel betrayed and/or tricked by their surgeon; when they feel that their wishes that they had clearly communicated to their surgeon beforehand were willfully disregarded while they were unconscious… did that patient’s surgeon ensure, as they are duty bound to, that the patient was informed about the expected outcome of the procedure?  If not, informed consent was not obtained.

If a medical professional truly has a concern about their patient’s competency to make medical decisions for themselves, it is incumbent upon that professional to be open and forthright about this concern and to take steps to protect the patient in a legitimate, prescribed manner.  This is done, for example, for patients who suffer from advanced dementia, and usually involves the courts.  Are mastectomy patients, typically women who are undergoing treatment for breast cancer, incompetent by virtue of our current circumstances? No. Do we forfeit our bodily autonomy when we become cancer patients? Absolutely not. Flat denial, the practice of lying by omission, and steamrolling over the patient’s consent, deceiving them to get them onto the operating table in order to do what you think is best for them regardless of their wishes – this is clear malpractice.

This is the 21st century, for those operating among us who haven’t gotten the memo, and women are no longer second-class citizens stripped of social, legal, and political power. We will not stand by while this type of abusive and, often, predatory behavior is perpetrated against women, and say nothing.  And do nothing. The era when women were hamstrung by our second-class status and unable to defend ourselves is a shameful chapter in human history, and it is coming to a close.  Those who participate in maintaining the status quo for their own benefit, will be viewed by future generations with shame and disgust. The women who have been victimized by flat denial, are not the ones who should feel that shame. Let’s put the shame squarely where it belongs:  upon the shoulders of the surgeons who perpetrate this, and upon anyone in a position of power who knowingly allows it to continue – in particular, those who participate in actively covering it up.

Flat denial is malpractice.  It is completely unethical, unacceptable, and should never be tolerated by the medical establishment. The fact is that right now, it is tolerated.  This tolerance is exemplified by the case of Dr. Steven Bernard, who steamrolled my personal consent in February of 2017. Bernard has been protected entirely by the powerful institution for which he works, the Cleveland Clinic.  The Clinic’s motto is, “Patients First,” and they are the #2 hospital in the nation. Of all the women who have come forward and shared their stories with me… NONE have received any acknowledgment by the surgeon or the hospital, of the wrong that was done to them.  Clearly, the medical establishment tolerates flat denial. This allows women to continue to be victimized, left mutilated and traumatized, to fend for ourselves in the aftermath following surgery.  And most of the time, while dealing with ongoing cancer treatment, which in and of itself is traumatic. Let that sink in.

Maybe the saddest part of the whole thing is that this intentional, permanent damaging of already vulnerable patients is completely and utterly avoidable.  As cancer patients, we trust our medical team to treat us in good faith – and in cases of flat denial, these are the people who violate us at our most vulnerable moment, when we are unconscious and unable to defend ourselves.

There is something rotten at the core of surgical culture when malpractice is widely condoned, covered up, and perpetuated.  The adage that keeps coming to my mind is, “physician, heal thyself.” In the Christian scripture, when Jesus said this, he was addressing hypocrisy.  Well, the hypocrisy of a physician who disregards the patient’s consent in order to do something to them against their will, causing serious emotional trauma and irreparable physical and emotional harm – specifically and intentionally forcing the patient to incur additional medical risk for revision surgeries – is shocking.

And it should shock people to hear about this.  How complacent would a person have to be to learn that this is happening to women, and NOT be shocked?  How unfeeling and frankly how utterly lost in terms of one’s moral compass, does a person have to be to hear about this malpractice, and think to themselves, the correct response here is to cover this up and protect the perpetrator?

It is simply unacceptable.  And I will continue to speak out until this malpractice ends.  I will fight until flat denial is no longer tolerated by the medical establishment; until surgeons are held accountable for violations of their Hippocratic oath to do no harm.  When flat denial happens to one woman, that’s a tragedy. When it happens to hundreds of women, maybe even thousands? THAT is a systemic sickness within the medical establishment that must be addressed aggressively from the inside out.  If I have to stand outside with my shirt off to make that happen, so be it.

To the women who have been victimized, I’m here to tell you:

You are not alone.  I stand with you.

And I will continue to fight for you, for our daughters, until flat denial is acknowledged and addressed by those in power: surgeons, hospitals and hospital administrators, and legislators.

I call again on ALL public stakeholder organizations to speak out and stand up for mastectomy patients because clearly, individual hospitals are refusing to do so.  In July of this year, I sent out an email identifying flat denial as a systemic problem, and requesting the acknowledgment/support of the following organizations.  I only heard back from one of them, the Young Survival Coalition (watch for the publication of a blog post on this issue in the coming weeks).  The other organizations have not responded to my email at all.  I sent another email out today and will be calling each one of these organizations tomorrow. These are the stakeholders I have identified (I’m sure there are others – please add your ideas in the comments):

American Cancer Society (allison.miller@cancer.org)

National Organization for Women (press@now.org)

American Society of Plastic Surgeons (media@plasticsurgery.org)

Susan G. Komen Foundation (press@komen.org)

Coalition for Patient’s Rights (apierce@gidellc.com)

Until the medical establishment acknowledges the existence of flat denial, we face an uphill battle getting this problem solved.  I will leave you with the words of Breastcancer.org, a non-profit organization:

“Some women who want no reconstruction say their doctors just assumed they wanted reconstruction or that they’ve felt pressured by their doctors or family members to have reconstruction… If you feel that your doctor isn’t fully listening to you or isn’t taking your choice of no reconstruction seriously, make an appointment with another surgeon to get a second opinion.” – Breastcancer.org

It should go without saying that the onus here shouldn’t be on women – cancer patients no less – to change our behavior to protect ourselves against predatory medical professionals.  That is entirely backward.  The onus should be on the surgeons and hospitals to PROTECT THEIR PATIENTS.

Is that really too much to ask?