Part 1: Grey’s Anatomy

One night, I wrapped up in my favorite blanket, laid on my couch and found the prior week’s episode of Grey’s Anatomy, “Puzzle with a Piece Missing,” online. And all was right with the universe again … until I heard those words, unexpectedly, 20 minutes into the show.

“Aortic dissection.” My ears perked up, my muscles tensed, and suddenly every fiber of my being was focused on the show. Dr. Pierce, a cardiothoracic surgeon on the show, was speaking to her very pregnant patient, Rita. “You’re having an aortic dissection,” she said. “It’s a tear in the inner wall of your aorta that causes blood to force the vessel apart.” So, of course, Rita fell headlong into tears. “Just make sure that my baby is okay,” she sobbed.

And that did it. Without warning, tears filled my eyes and my mind raced back in time to my own sobs six years ago, my own cries for help, and my own newborn baby.

Part 2: The Real World

You see, I’ve actually survived an aortic dissection while pregnant. I was “Rita,” in real life. Of course, in my world, “pregnant woman experiences aortic dissection” isn’t an interesting story line. It’s a nightmare that came true.

It happened on a cold, Sunday morning in October 2008. I was 28 years old and 35 weeks pregnant with our only child. I’d been in the hospital for two days so that doctors could keep an eye on my rising blood pressure, and when I leaned my head back into the hot shower spray that morning, I felt my jaw tighten and excruciating pain shoot through my teeth. I felt like something inside of me was cracking open, and I suddenly felt too hot. I screamed for my husband and began sobbing the only thing I knew to say, “Something’s wrong, honey! Something’s wrong!”

Like Rita, the patient on Grey’s Anatomy, I had an emergency C-section and emergency open-heart surgery that same day. Unlike Rita, however, no one yelled, “Cut scene!” when I finally woke up (four days later) and asked immediately about my son. I didn’t get to hear the camera crew applaud my tears, and I didn’t get to take off the hospital gown and go home. I didn’t get to go home at all, in fact, until my son was six weeks old.

Even then, when I thought I’d finally made it to the end of my journey through hell, I was discharged and the real journey began. I survived an aortic dissection, emergency C-section, three open heart surgeries, a failed kidney, a horrible GI bleed, and countless smaller procedures that year. I am better, broker, and bolder as a result.

Part 3: Learning to Speak Up

It blows my mind to think how little I knew and understood of the American healthcare system before I got sick. I didn’t know that I had the right to ask about treatments that seemed unnecessary or to tell my nurses that I would rather they talk to me in the room and not about me in the hallway. I’d never even heard of patient engagement or patient-centered care. All I knew was that I wanted to live. I wanted the chance to be my son’s mother.

I learned very quickly though that all that “patient engagement stuff” and all that “being alive stuff” went hand in hand. The more engaged I became, and the more questions I asked, the better my care became.

Maybe that’s why I became such a passionate advocate for engaging patients in every stage of care. I truly believe in it.

Part 4: The Conversation We’re Not Having

You see, on Grey’s Anatomy things like “patient engagement” don’t matter much. No one’s life actually hangs in the balance. In real life though, it matters a great deal. We know now, statistically, that engaging patients yields better outcomes, and we know that very often “engagement” begins with a simple conversation.

Have you ever heard providers on Grey’s Anatomy talk to patients about the cost of differing treatments? … How about your own doctor though? Have you ever had the “cost conversation” with any member of your healthcare team?

I can’t say that I have. I am treated, very often, by compassionate, intelligent, accomplished doctors and nurses who truly make patients part of the healthcare team. And yet, I have never, not once in six years, been asked by a provider if I would like to have a conversation about the cost of my care options.

I’m not exactly sure why. I need to have these conversations. The amount of money I pay out of pocket for care affects the quality of my life just as much as my blood pressure or creatinine levels do. Money affects the food my family can afford to buy, the house that we can afford to live in, the prescriptions I choose to fill, and the way I choose to exercise. It affects everything!

Part 5: National Quality Forum: “Affordability from a Consumer’s Perspective”

That’s why I accepted an invitation to co-chair an NQF panel on measuring affordability from a consumer’s perspective.

We learned that the consumers in our group want to have “cost conversations” with their own providers. The providers we worked with, however, feel ill-equipped for those discussions. “I don’t know what your insurance company will end up charging you in the long run,” one physician pointed out, “So what can I do?”

He wasn’t the only one with that question. Patients and providers alike feel overwhelmed while trying to figure “the bottom line.” Cost information is often confusing for those who access the system and for those who run it.

Quality information can be equally confusing. Yet, it was just as important to our group as cost data when evaluating treatment options. You see, “affordability” doesn’t exist in a vacuum. Cost is only one part of the puzzle, albeit an important one. No one wants “cheap” healthcare. They want EXCELLENT health care at an AFFORDABLE price.

I can’t wait to do further work in the area of affordability because, unlike our friend Rita, I have to pay the medical bills I accumulate. I have to decipher lengthy hospital bills from 15 different providers, all of whom expect minimum monthly payments, and I have to figure out how to pay them all and still feed my family.

The money that leaves my bank account every month is real. The effect it has on my life is real. So isn’t it time to start having real conversations about the cost of care?