Elaine Waples underwent major abdominal surgery in 2010 for stage 3 primary peritoneal (ovarian) cancer that had metastasized to several organs.' Since then she has undergone two years of a robust treatment regimen including 8 rounds of chemotherapy.' Her journey is chronicled on the online health care magazine Care' and Costs, edited by her husband, Brian Klepper.
At a recent dinner party my husband and I joined two other couples in a lively discussion on the frustrations of American health care. We rounded up the usual suspects ' cost, quality, access, politics, and broken systems. At some point the conversation took a subtle turn and we began to talk about the doctor-patient relationship.
Before long, I offered a comment that I probably wouldn't have made before my last two years of serious doctor-going. I said that some patients want their doctors to be a combination of Marcus Welby, House and the Wizard of Oz.' They want a great bedside manner, a brilliant diagnosis, and a miraculous solution. And I suspect that doctors want their patients to be compliant, accept a possible imperfect outcome, and have enough insurance to cover it all.
Not too long ago, I considered myself a member of the uber-healthy population who see the doctor once a year for an annual checkup, with occasional interim visits for the lingering cold and sore throat. These are the folks who perch on the exam table, tap their feet impatiently and hope the next sound they hear is the doctor opening their door. In and out, prescription in hand, back to work, see you again next year.
But things are different for me now. Today I belong to that group of people with serious illnesses who spend lots of time in doctors' offices, diagnostic labs, and imaging centers. I quickly discovered that I had some interesting choices about my care. One was to be constantly stressed about a system that was flat out frustrating a good deal of the time. Another was to succumb to the emotional fetal position of pretending that I had no control over anything. And lastly, make peace with the situation, get over it, find out what I needed to do about my care.
I learned that negotiating the system, such as it is, requires knowledge, healthy skepticism, intelligent communication, and a big dollop of trust. It means making a few serious commitments: 1) adopt an active role in understanding and accepting what was happening to my body; 2) play a substantial part in the decision-making process; 3) have reasonable expectations about outcomes; and 4) never compromise personal integrity.
Call me a Pollyanna, but I suspect that most good doctors and health care professionals would actually like us to do those things.
From the patient and doctor perspectives, this is a challenge in today's world. Doctors realistically have 15-20 minutes with us during an office visit to cover a mountain of information and hear our side of the story. However, modern technology has added some twists. Like jailhouse lawyers, we have the ability to research, investigate, and insist on what we think is best for us. And conversely, doctors can choose from an array of the best tests and treatments modern medicine has to offer.
Neither of these are bad. But all too often there are unspoken questions. Who pays for things? What if we don't agree or understand? What happens if we're stubbornly non-compliant? These are left unanswered until they become the biggest elephants in the room. It's a recipe for frustration.
My husband and I have been slogging our way through this for two years. But we have practiced common sense and learned lessons along the way. Things are far from perfect but we know we need to be reasonable and in control of what's going on.
We accept the fact that there is a two way street between patient and doctor.' When there is a consultation with one of my doctors, it is a group think.' My husband is always there and thankfully he asks questions that either don't cross my mind or I don't realize how important the answer may be to him.' Serious illness is a family issue and needs the collective voice and ears of spouses, partners and caregivers.
We have learned to conduct reasonably intelligent research on our own and then bring that knowledge to the discussion.' We know that even though we have read the latest information on protein biomarkers and comparative genomic hybridization, my doctor has been busy with the practice of medicine. The expectation that cutting edge research and real time application are perfect bedfellows is unrealistic. So, many of our conversations start with the words 'why couldn't we'.?'
And finally, outside of the doctor's office we talk about and make personal decisions about both the favorable and the questionable elements of any treatment that is recommended.' When decisions are made, they are our decisions and we live with them.
The doctors who have helped me over the past two years have spoken with honesty, listened to our concerns, respected our decisions, and been mindful of the challenges created by the system.' They treat us as intelligent decision makers and we feel lucky and grateful that they work with respect and integrity. I hope that our approach has helped pave the way for them to do so. Not everyone is so fortunate to have the resources that we do.' But despite that, the basic principles of developing and maintaining a healthy doctor patient relationship can make a flawed system work a whole lot better in most circumstances.
After all, the Wizard of Oz had a wish list he couldn't satisfy. But with honest conversation, ruby slipper coverage, current wicked witch data, and a big dollop of trust, he and Dorothy managed to work it out.