Just For the Records

In a previous post, I was venturing into the wonderful world of obtaining my daughter's lab records from an incompetent pediatrician. While this undertaking lacked the drama of A Traincar Named Quagmire, it is still noteworthy because it shows yet another example of how you can advocate for your or your loved ones' needs -- even if you have to muddle through muddled administrative minds.

This time, the setting was not a traincar, but a desk at work. A few days earlier, I had made arrangements with a "staff" member at the doctor's office -- and I use that term (doctor's office) loosely -- to pick up the lab results. 

All I had to do was show up.

But I knew better. I knew to call first before I showed up to pick up the records.

So, as I expected, the phone conversation was rough, mainly because the people at the other end of the phone couldn't even buy a clue as to medical terminology. This is how the conversation went verbatim (things got pretty steamed toward the end):

Me: I am coming over today to pick up my daughter's lab results.

Stupid Staffmember 1 (SS1): Your daughter's wha???

Me: Lab results.

After telling SS1 my daughter's name, he comes back on the line.

SS1: We only have her labs, not her lab results.

Me: What are you talking about? Are you talking about documentation that she had her blood drawn on the day of the exam? (I used the term "exam" loosely.)

SS1: Yes.

Me: I don't need to pick up proof that she had her blood drawn, just the results of the blood draw.

SS1: Yeah, like I said, we have the labs, not the results.

Me: That makes no sense to me. The results of the lab tests are what I need.

SS1: We don't have them.

Me: (Trying to contain myself): You have to have them. I was to speak with the doctor two weeks ago about the results, and I cancelled that appointment. But the results were supposed to be in awhile ago.

SS1: But they're not in. It's really no big deal...of no great importance, really.

Me: (No longer able to contain myself): WHAT DO YOU MEAN IT'S OF NO GREAT IMPORTANCE? Do you want to know why it's of great importance to me?

SS1: Why? (I could've had more intellectual discourse with a cow.)

Me: Because I watched my daughter endure a lot of pain by being stuck repeatedly AND I paid $500 for the tests, so I would say I have a large stake in the matter.

At this point, I was put on hold. 

Then Stupid Staffmember 2 gets on the line.

SS2: Ma'am, we don't have the labs.

Me: But you have the lab results, right? Let me explain to you why I want the lab results. Frankly, I didn't appreciate the care my daughter received at your office. The doctor lacked skills, and gave her a poor exam. I've had no choice but to fire him. I need the lab results to give to another doctor. 

SS2: Yes, that's what we've been trying to tell you. We have the lab results.

Me: The results of the lab tests, right?

SS2: Yes.

Me: Then I'll be over within an hour to pick them up and sign a release.

When I got there, the results were in an envelope. I made sure to open the envelope immediately to make sure they were the right patient's results. Indeed they were. 

As I was signing the Release of Information form, a woman was complaining because she had an appointment with this same doctor, and lo and behold, he was on vacation but no one told her! The staff claimed they didn't know he was on vacation until that very moment. And, not to my surprise, the woman said this has happened to her and her four children three to four times already.

I told her that I was there picking up my daughter's medical records because of the doctor and suggested she find a new physician. What she said next blew my mind: "Oh it's not the doctor I'm unhappy with; it's the office staff."

I disagree that a doctor and staff are two different entities. You can tell a lot about a doctor by his or her office staff and the waiting room environment. This will be the topic of my next posting.

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 has a guest posting on The World's Strongest Librarian at http://worldsstrongestlibrarian.com/3597/sharing-a-loved-ones-pain-guest-post-by-beth-gainer/.

She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

No Guilt Trip, Thanks

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.

And effective.


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 bethlgainer@gmail.com and gainercallingtheshots@gmail.com.