On March 14, 2004, while deployed overseas my life took a dramatic turn for the worst – my three-year-old son died. His accident was rare and at the time only occurred 358 times a year in the United States, but that was one too many – a parent should never outlive their child. Following my third tour to the Middle East I was again deployed and not there on that fateful day. The experience left an indelible mark on my life, shattered my view of emergency care, and created almost debilitating anxiety about future fatherhood. Despite serving in Special Operations during my military career in my heart I knew I was not strong enough to get back up should I lose someone so precious as Joshua again. So what does a father, or a parent do when it comes to a life changing health event for their child? Don’t we all want the best outcomes for our children’s health? How do we measure a value so that as parents we can make the right decision about medical care for our children…and ourselves?
I am not overly religious, but God or some sort of Irish luck befell me on September 7, 2013 – the day our son Sebastian entered this world. Both my wife and I had gone through the ups and downs of the adoption process and at times thought we’d never be matched or the day come when we’d be able to adopt; yet there we were in a Florida hospital room blessed by a young selfless birth mother to be given the amazing parental responsibility to love, care, and protect Sebastian. From day one Sebastian asserted himself as a strong-willed baby who despite life’s challenges will always get back up. His spirit and “intestinal fortitude” was proven time and again as he found himself in physical therapy from the age of five months old to twenty-two months old as he and top-notch physical therapists worked to overcome torticollis and plagiocephaly. Despite the physical therapy, Botox injections, vision therapy, and two cranial-facial helmets our son was in the rare .5% of children that required surgery.
As parents faced with the decision to allow surgery on our baby we did what anyone would do – we researched the procedure, read countless articles and blogs, consulted multiple surgeons, had heated arguments about the pros and cons, and tried in vain to find some way to control the outcome for our son. We like many of you reading, sought peace of mind about the quality and safety of an operation, and a successful health outcome that improved functionality and reduced pain. Yet nowhere in our research did we find some clear and measurable outcomes for the provider nor the hospital. In fact, we even encountered a surgeon’s refusal to discuss his outcomes or even disclose how many times he’d performed the surgery before! Ultimately, much of our decision came down to where the provider had gone to school and our comfort in dealing with him in the past. We wrongly associated that a surgeon who studied at a name recognized school, Johns Hopkins, must be better than one that studied at University of California Los Angeles (UCLA). However, just because you studied at a leading institution, or work at a reputable hospital does not mean you’ll deliver a better outcome.
My wife Leeza is my rock
In truth, she led our research efforts and utilized social media relentlessly to reach out to other parents. It is her hard work that ultimately changed our minds on what surgeon and path to take. We landed on an August Thursday morning in Florida. On Saturday Sebastian was scheduled for surgery at the local hospital with Dr. A. After landing, my wife turned on her cell phone and seconds later the text alert dinged. It was a lady that my wife had become acquainted with via social media (Facebook) and whose son previously had the surgery. The message was simple, “Call me when you get this. Do not get your surgery with Dr. A.” Alarmed, my wife immediately called the lady in the terminal. Over the 35-minute discussion we learned that the woman previously scheduled her son (same age as Sebastian) for the surgery with Dr. A, but cancelled because of poorer health outcomes. Instead she chose a doctor in Atlanta who had pioneered an endoscopic procedure.
Dr. A’s procedure was more invasive, higher chance of complications, required additional Botox injections following surgery (which required anesthesia and hospitalization), and a greater chance of needing a procedure again. Sebastian would also have a visible X-shaped scar on his neck because of the needed incision to miss the carotid artery. Dr. Burstein’s procedure was less invasive, required twelve weeks of physical therapy post operation, but no additional Botox injections or hospitalization, a predictable restoration of full range of motion and left a minimal scar behind the left ear. It seemed like a no-brainer, but we’d yet to meet Dr. Burstein or “Google” him to learn more, and already had a surgery scheduled in two days. However, with just one phone call he sent reading material and agreed to Skype the next day to discuss.
On Friday, we Skyped with Dr. Burstein, and not only did he field our relentless questions, but he also had the data to show that his procedure would yield a better outcome. The peace of mind we provided when discussing the what to expect was invaluable; we made the decision to go with Dr. Burstein. Not only did we cancel the planned surgery the following day with Dr. A, but we also flew Sunday to Atlanta. We met with Dr. Burstein in person on Monday and the following day he could conduct the surgery.
It was tough, really tough; watching our son be wheeled away for surgery and not being with him during the operation. I prayed that I’d see my son again. Self-doubt about did we make the right decision, and would our son be OK did creep into our minds while waiting. Yet we took comfort in that we had made an informed decision based on value-based outcomes for what mattered most – our son.
For those of you with children, or even those without I hope my story resonates with you as does this question, “how do you today choose your doctor?”. Is it word of mouth, a Yelp review or based on where the provider went to school or which hospital he or she works at? The truth is that most of us make the decision without understanding value – a now three-year-old boy enjoys full-throttle toddler life because a provider was transparent with his outcomes. Wouldn’t it be great if everyone else did too?
Also published in Value Management for Healthcare