Advocating for yourself goes beyond obtaining the best possible medical care. Self-advocacy also includes knowing whether to say “no” to other parties and/or your own doctors who want to publish some of your medical information (anonymously), in the interest of medicine/science/public awareness campaigns.
Frankly, each of us must determine what information, if any, we want to share. I’m not suggesting that these parties or your doctors have ulterior motives. The vast majority have good intentions and wish to disseminate information in order to educate others.
But good intentions or not, it is up to the patient, not the doctor or any other parties, to share his or her story.
I am often asked to share my story of my breast cancer experience to others, and I pick and choose which information to share. For example, last year, my hospital asked if I wanted to write my story that would also be a part of a DVD and whether I’d participate in Survivors’ Celebration Day. Without a doubt, I said yes. To this day, I am glad and honored that I was asked to be a part of this.
A few years ago, someone in the media called me to ask whether, if my face were hidden and anonymity guaranteed, I would do a breast exam on air!
I told her, “no.”
It’s hard to say “no,” especially since it’s uncomfortable knowing that you might be angering others or hurting their feelings. But to put things in perspective, if you are not okay with it, then it’s not okay.
Within the last two weeks, my plastic surgeon’s office called me. Would I be willing, if I had complete anonymity, to have my before/after reconstruction photos released to a medical magazine? At first, believing that I’d be helping to educate others, I said I was interested. The receptionist kept calling me to ask if I looked over the release. That set me on guard, and my gut instinct was telling me not to do this.
And once I read the release, I knew my instincts were right.
Couched in a seemingly harmless document was language that made me uncomfortable. The document promised anonymity, but said that in certain circumstances it was possible that my identity would be recognizable based on “unique physical features.” Even worse, was the document stated that these before/after reconstruction photos would become the property of the American Society of Plastic Surgeons.
Now how could my body — which is my property and no one else’s — become the ASPS’ property?
The last paragraph of the release was the last straw. It said that although I’m protected by HIPAA, since the ASPS is not receiving its information through a traditional health care provider, my HIPAA rights might be violated.
I don’t know what side of stupid the doctor’s office thought I woke up on that morning, but there was no way I would allow my HIPAA rights to be violated.
I care deeply about educating others, and I’m grateful to my surgeon for his unbelievable skills. But, let’s be real here: he was paid good money to do his job.
I e-mailed my refusal to the surgeon’s assistant so that there would be a paper trail. Here was my response, which anyone reading my posting can use:
“After reading the Authorization for Release of Patient Photograph, I’ve decided to decline and not release any photos. It is in my best interest to not grant permission for the release of these photos.
Thank you for your interest, and I wish you the best in finding patients who are willing to participate.”
Short and simple.
Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at firstname.lastname@example.org and email@example.com.