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Patient Privacy: Let's All Get on the Same Page

Author: Johannah Back
PIPSQC Ambassador Assistant Lead

I am just a mom. I, like many of you, have been thrust into the world of patient safety due to the occurrence of an unfortunate medical error. Our entrance to this world began because our daughter's G-tube feeding was connected to her IV line, causing fortified breast milk to be sent through her bloodstream and internal organs. She suffered Disseminated Intravascular Coagulation (DIC) and several other medical emergencies, but after three days on life support, she miraculously survived.

Our lives have never been the same--we were thrust into an arena that we never knew existed and one that I personally cannot easily walk away from. I have this undying need to do all that I can to help prevent another person from experiencing the same error that occurred to our daughter, which is known as a tubing misconnection.

I have become acutely aware of the risks associated with inpatient stays, outpatient procedures, medication dosing, etc.--the list goes on and on. I am probably that "mother" for whom the nursing staff dreads dealing with--as I do not leave my daughter alone for one minute and observe everything that is done to her and for her. I observe all clinical/office procedures that are followed by the staff--from the front office to the physician to the custodian cleaning in the halls. I will not hesitate to contact the appropriate department head, and if necessary, express my concerns at the time of the occurrence. I have not been to nursing school nor have I been professionally trained in the various other medical professions. But as a patient caregiver, I have learned many lessons (the hard way) that I will never forget and I hope that sharing these experiences will again help others to see problems, fix them and make the patient/patient caregiver experience a better one.

Our daughter recently had her second open heart operation. A very stressful time for anyone. Our local hospital has a very large surgical waiting area. It's a busy place with a big wooden door adorned with a lock and keypad. The receptionist at the front desk will buzz you in so that you can go to either the pre- or post-op sections of the surgical wing. This is the same door that the surgeons come out of--to notify the families and next of kin what the prognosis is for their loved one.

On this occasion, we spent about seven hours in this area. Our daughter was the second surgery of the day--and the heart surgeon was running late with the first surgery. What does one do while waiting? You observe . . . everyone is watching each other and waiting . . . you hear conversations you do not mean to hear, you talk to others . . . you make friends. You watch that door open up and when it does . . . your heart drops to the bottom of your stomach . . . you hope it's your surgeon but are scared to hear the results.

When that door opens--everyone stops what they are doing and looks up . . . and watches. And listens. It's just human nature. I watched over and over again that day--surgeons who called out their patient's name in search of the family. I heard surgeons dressed in their scrubs give reports and you could see the families rejoice and you were happy for them--but at the same time wondering if you would also get a good report. There were about 70 procedures that day . . . (yes, I pay attention to the small details, it's a curse I think) that is a lot of door opening and result giving . . .

It's now after 5pm. Here comes a street clothed woman that has not been seen all day . . .

"Back family? Back family?"

"Yes. We are here."

"Please follow me into this room."

Wait . . . I did not see anyone go into this room all day. Why must we be taken into a room to hear our daughter's results? You can imagine the reaction I had. I thought the worst and I probably could have been taken away in a straightjacket . . . I did not want to go into that room. My mom also reacted as I did and I am thankful my husband was a bit calmer than my mother and I were. We waited for what seemed an eternity. The surgeon came in. His first words were "Boy that was tough," as he took off his surgical cap. So as he told us what he did--I asked him if our daughter was still alive. Thankfully he answered yes--and I can tell you that he was not expecting the rush of emotion that was displayed by our family. It was not until we told him what had transpired during our wait time that he fully understood why we were so frazzled (for lack of a better word).

We have a wonderful surgeon. He immediately went to the hospital administration and filed a complaint--insisting that they enforce the HIPAA regulations. The room we were in is designed to be used by EVERY doctor to deliver results-- to avoid what we went through. Our doctor apologized. I have not returned to the hospital to observe the waiting room since this day. I am hopeful that the hospital administration is doing all that they can to ensure patient privacy and that the HIPAA laws are being followed. I guess I am nervous about what I may observe if I visited. As I know too well that even when clinical procedures are well outlined, they are not always followed.

I am just a mom. But, I am a mom who has seen and felt the impact that one tragic mistake can cause. I'm a mom who has spent countless days within hospitals, witnessing and experiencing first-hand how what may seem like minor shortcuts against policy to some, can drastically affect patients and their loved one's well-being. As a mom, I want to thank you and your organization for making sure that your staff is following HIPAA rules and regulations as they apply to patient care/privacy.