Side by Side: Why Patients Should Be Included in Peer Review

My son, Emmett (age 14), is developmentally and physically disabled. He functions at a 6 month level and cannot do anything for himself. He is non-verbal, non-ambulatory, and needs diapered, lifted, fed, and medicated several times a day. Because he suffered aspiration pneumonia as an infant, he remains as an aspiration risk for the rest of his life due to his hypotonia, submucous cleft palate, and laryngomalacia. Emmett has a nurse to accompany him on the bus to and at school to keep him medically safe from choking, gagging, or suffocating. He is also immunosuppressed. Emmett’s condition is rare (one of 3 in the world) and genetic, so his overall condition is permanent and will likely remain unchanged for the rest of his life. To obtain an assessment and diagnosis of Emmett was a nightmare that consisted of my husband, Drew, and I giving up counting specialists seen at 60. There were more than that…we just stopped counting. 

Emmett’s secondary insurance, Medical Assistance, helps cover the cost of the myriad of his medications, assistive technology devices, adaptive equipment, doctor’s appointments, hospital visits, and very importantly, his skilled nursing. Probably reading my first paragraph you thought: “there is no question this kid needs skilled nursing.” And living with him every day, I wholeheartedly agree with you. However, for some reason, early on, the MA insurance company didn’t agree with us. They required doctors’ letters, exam notes, medical records, tests, bloodwork, and documentation that would make your head spin. Whatever piles of paper I sent weren’t good enough to convince them a couple of times, so our case had to go to “peer review.” 

Peer review consisted of Emmett’s pediatrician (whom we adore) and the medical director of the insurance company having a one-on-one talk about my son’s situation. I had a case worker at the insurance company who served as my “advocate” to help navigate my son’s case. What my case worker didn’t know was that I hold 2 Master’s degrees (one in Health Administration, one in Business Administration) and 10 years (at the time) of healthcare management experience. I worked side-by-side with doctors, and had witnessed many peer reviews for other patients. I was more than familiar with the term “medically necessary” and its power to get procedures approved and covered. Because of my background, I expected answers and information from my case worker that she wasn’t delivering. After yet another denial, I had her “removed” from my case and decided that I was my own best advocate. Through some super sleuth work, I obtained the phone number of the medical director and called her myself to ask the status of my case. Well, you would’ve thought I broke the law. “How did you get this number?” she curtly asked me, clearly offended by my very existence. “Patients are NOT permitted to call me.” I was insulted. “I beg your pardon. I am mother to my special needs son and his advocate, since my case worker sucked. I only want to know how I can help facilitate this process to obtain the care my son needs.” Infuriated she replied, “You need to go through the proper channels,” and basically hung up on me. Nice. Needless to say, we were denied yet again at that level and went to a “fair hearing.” Awesome. 

I couldn’t WAIT to meet my nemesis in person. Someone must’ve clued her in to whom she was dealing with because she “conferenced in.” Around the table were me, my husband, a paralegal who provided free advisement through the Health Law Project, the insurance company executives, and a few “objective” representatives. (Our pediatrician conferenced in between patients). We presented evidence back and forth until I was worn down, and my emotions got the best of me. I tearfully pleaded, “Do any of you have a special needs child, or a totally disabled child, or like us, one that is both?” They all shook their heads no. I asked, “Would it help if you came out to our house and saw what we have to deal with? Because you are more than welcome to. It is the most difficult day and night you’ll ever experience, I guarantee it.” Total silence. I concluded with, “I really have nothing more to say other than ‘We depend on this nursing.’” We were approved the next day, and other than submitting a ton of documentation for a few subsequent years, we’ve been approved ever since. And to be fair and grateful to the insurance company, they granted us automatic approval of our son's nursing since my stage 4 cancer diagnosis and have even granted us extra hours as I endured treatment and recovery.    

Peer - one that is of equal standing with another 

Speaking of my diagnosis, I could tell you about another time that my oncologist (whom I adore) and I had to fight in “peer review” for a PET scan that was being denied as “not medically necessary.” Now, mind you, a CT scan completely missed the tumor on my liver, and if I didn’t have a more sensitive PET scan, I’d be dead. So, I’m pretty sure I know what imaging is appropriate for me. The insurance company didn’t see it that way. The practice manager (my hero,Vincent McClosky) and I literally sat in his office for four full hours on the phone fighting for that scan. (And P.S. if you’re looking for tips on how to be a patient champion, speak with Vince). We couldn’t get to the appropriate decision maker for the life of us. We got shuffled around from person to person to person; very frustrating. It was like there was a firewall between us and “getting to yes.” Ultimately, the scan was denied but was approved right after the first of the year when my deductible renewed…hmmmm…such an interesting coincidence that I was suddenly eligible when nothing else had changed. (that’s a whole nother article…) 

Why are patients not included in the peer review process? Why are the decision makers people who have everything to do with cost and nothing to do with care? Why was I literally dismissed by that medical director who treated me like a second class citizen? She might as well have said, “Listen you peeon, I ONLY speak with other doctors. You don’t know what you’re talking about.” And in this article, I finally get to say, “Listen Dr. Medical Director know-it-all, it just so happens that because of my education but more so my professional experience and most so my personal experience as my son’s mom, I DO know EXACTLY what I’m talking about.” Patients and caregivers absolutely need to be involved in decisions about what’s right for us. We know ourselves and our loved ones best. And for those who are more introverted or who don’t feel as comfortable, there are trained patient advocates like Grace Cordovano who will represent your voice. Yes, physicians are peers, but so are nurses, physical therapists, mental health counselors, social workers, and PATIENTS! #InThisTogether #DoingAwareness

Stacy Hurt, M.H.A., M.B.A. is an award-winning 20+ year healthcare executive and stage IV cancer survivor. She has served as a patient advocate for thousands around the world. As a Patient Experience Consultant, Stacy identifies gaps where companies and health systems can better serve their end users by incorporating her first-hand patient/caregiver perspective and implementing easy-to-use, revenue generating tools. Connect with Stacy on Instagram Facebook Twitter or Her Website