I’m told that one should not mix stories in a blog, but, as a serial disruptor, I’m about to do just that. I’m inspired by Representative Giffords and see her story as a frame for some ideas that simply won’t rest in my tired brain.
You may remember that I wrote the E Pluribus Unum blog last year just after Ms. Giffords’ near-death shooting in Arizona. Her story took the nation to a reality-check on guns and mental health, but it also broke my heart for the family of Christina, who went with her classmates to meet the local representative of the US Government (Ms. Giffords). Christina was one of the victims that day—she died from her wounds.
Still, the sun rose the next day, and Gabby Giffords gave hope back to America. She began her slow recovery with the amazing care she received from a health care system that was in sync to help her recover. She was transferred, later, to a center for the intensive therapy needed to regain skills of walking, talking, and more. She went to Cape Canaveral to watch her astronaut husband lift off on the last space shuttle trip. She wrote a book about her journey, and we cried with joy.
This is the promise of America: all hands form a team that saves a life, all hands who can’t be part of the team cheer the success. Add the glamour of space travel and romantic love, and the TV-movie industry wishes that it had dreamed up this story—yet who would have believed it, as it was so surreal?
So where are those everyday heroes? Because over the last 30 days, my encounters with the health system have been less than heroic, and the stop/start/stop/ halt/restart mess of interoperability-safety-
The US health system has surely been going through enormous change. There are stellar stories of success in electronic medical records for hospitals and physicians, for empowering patients (with personal health records on my phone or iPad), for revealing transparent pricing and quality so I can choose appropriate treatments and know my out of pocket costs. Or…?
In the last 30 days I’ve met with a new primary care physician so I could establish a medical relationship. My previous physician left her office with no notification of where she might next appear. No problem, I have my health history, can begin anew. I sought a physician with an electronic health record that is hooked up to a health system and that will also deliver my health information to my personal health record. I offer to pay for my initial visit because, as I tell the scheduler, I want to interview the doctor to see if our personalities and technology will jive. When I arrive, they charge me my copay, I remind them I’d like to pay for the visit so I can discuss what I need, and they say, “No need, this is how we do it.” Well, ok!
We meet, we greet, no ugly paper or cloth “gowns” (may I just insert that my idea of gowns are the kinds that look fabulous in public with brilliantly crafted shoes?). He asks me some questions about my health (completely fine, thank you, here are my records). I ask him if he can cope with a person who has a healthy scope on the health system, understands appropriate use of the system, and is the CEO of her health. “Oh yes, “ says the kindly doctor with the white coat and stethoscope. We schedule my physical for 6 weeks later.
I am now in the room with Mr. Hyde. Dr. Jekyll has left the planet. Charmingly, he begins ordering tests I don’t need (there are no guidelines suggesting the tests), “discovers” a potential “problem” in my EKG (as in “Houston we have a problem” level of problem) and immediately schedules a cardiology visit (folks, relax, there was no problem, there was a misread). He informs me I need these new tests because just yesterday he discovered a breast cancer in a woman my age (lovely use of calming technique). There is more, but I will spare you the rest.
Two weeks later I’m called by the nurse and told to immediately get another blood test, it absolutely can’t wait, and no we can’t tell you the lab values but they are “high.” I spend a sleepless night worried, I call back the next day and ask that the doctor please call me as I’m leaving town. He calls mid-afternoon, says there is no urgency, but it must be done immediately upon return. He then gives me the values, and I remind him that the numbers he is seeing, only 6 weeks after a perfectly normal blood screen and a record of good readings for 5 years, are not in crisis zone and, (I say, deferentially) that I believe the recommendation is to wait 6 months since I have no risk factors and then retest? “No,” says the physician, “I want it done now.”
If you’ve been reading my blogs, if you know me at all, you know I tend to not react well to that order. In fact, the Institute of Medicinejust released a white paper on the communication between patient and doctor, with principles that include supportive environment and respect. But I do get the requisite 2nd blood test, and once again I get a call to schedule an immediate appointment while no lab values are shared per doctor’s orders. I respond, as kindly as my heartbeat will allow, that I don’t make appointments without doing my research so that I’m prepared, so I need the values. “Then have him call me.” And, of course, a part of me prepares to die.
Breathe. The labs are not life-threatening; but the doctor’s attitude was. He told me he simply didn’t have the time to call me with lab values, I responded that I didn’t want his call, I just wanted the values and his nurse could have told me. He told me he’d reveal the values during our face-to-face meeting, I told him I wanted to be prepared with questions so I didn’t waste his time or mine. He told me that wasn’t how he worked. I reminded him of our first conversation. He said “in the office,” I said “empowered patient,” and told him I’d get back to him. We ended the call. Then I fired him in my mind.
But I didn’t drop my health. Yesterday, I made an appointment with my husband’s cardiologist because of his excellent treatment of my husband. The scheduler said, “Let’s get your records.” “They are on your interoperable system through the nationally-recognized health information system that you have,” I say, subtly letting her know that I’m an informed patient and I speak electronicmedicalrecord-ese.
Wait for it. Get a cup of herbal tea. Breathe deeply.
“But we can’t pull up records from another doctor, even if the doctor is part of our system.”
I’m speechless, no breath, no words. This is the second time in 60 days I’ve heard this.
So we have the picture, now, of healthcare done impeccably well through a trusted relationship of patient/family and the team of clinicians, then wrapped in a love story (Gabby Giffords). And we have a story of healthcare wanting desperately to do it well, putting systems in place that can do the job, but human rules making it so darn difficult that access and quality and that holy grail of “consumer-directed care” are unachievable.
Will reimbursement changes make this go away? Not likely. Will promoting primary care make this heal? I’m skeptical of a health quarterback that can’t hear the plays because the sound is turned off.
That wasn’t the healthcare reality that I envisioned with all the work that you and I do to improve it. These are all good people. In fact, WE are all good people. We all want to do the right thing. They are working hard to promote health. I am working hard to promote health. Gabby Giffords and her team are the epitome of “Hard work, well done.” My experience, not quite.
I shared this story with good friend and VP of the Center for Health Value Innovation, Ray Zastrow MD, CMO of QuadMed. Ray paraphrased a statement from Atul Gawande MD: Medical care should work like the pit crews of NASCAR. The outcome is the focus—get the car and driver back on the track. No lag time, no computer outages, or lack of transfer of knowledge. Diagnose, triage, heal. Seamless engagement and outstanding accountability.
This is the healthcare vision of the US. Obviously it exists, as Representative Giffords’ teams, and many other teams, including those in our Center for Health Value Innovation, show us day after day.
So I close another chapter in the quest for US health, with a message to Representative Gabby Giffords: Keep up the good work, Representative Giffords. We will miss you in DC. But you have a grander national duty now. I know you didn’t campaign for it, but I surely hope you’ll accept it: Show us how this is done with your NASCAR team of clinicians. Gather your pit crews around you for a stupendous recovery. We are cheering your success!