The Doctor Patient Tango
A good relationship with your retina specialist is key to protecting your vision on your macular degeneration journey. It gives you peace of mind and confidence. How can you make that happen?
What our relationships with retina specialists should look like
“Think of your relationship with your doctor as a tango,” said Sarah Krug, in a recent TED Talk. “The tango is based on a partnership between the dancers rather than one person always leading and the other always following.” Krug sent me the link to her TED talk after interviewing me as part of a clinical trial. We spent a lot of time discussing what was wrong with doctor-patient relationships especially with retina specialists.
The reality
“Take the vitamins, come back in a month for your next injection, you won’t go blind.” That’s what I remember hearing during the first appointment with my former retina specialist. No mention of diet, no referral to a low vision specialist, nothing but a “Have a good day!” from the receptionist as I paid my bill.
Many people with AMD have a similar experience. They say their doctor doesn’t listen, there’s no time to ask questions, their concerns are dismissed or ignored. That is why so many people turn to other sources, especially on the Internet.
The alternative: Participatory medicine
Participatory Medicine is about patients and their caregivers shifting from being mere passengers to responsible drivers of their health, and for providers to encourage and value patients as full partners.
Your story matters
The patient’s story is the oldest diagnostic tool in modern health care. Back in the 1890’s William Osler, one of the founders of the Johns Hopkins Medical School, led the effort to get medical students out of the lab and classroom and to the patient’s bedside. Brilliant at diagnosis, he trained his students to listen to the patient, to use their intelligence.
But things have changed
Things have changed. One study found that 75 percent of patients are interrupted by their doctor while trying to tell their stories. Doctors waited only 16 seconds before interrupting. Once interrupted only two percent of patients will finish their story.
The pressures on all doctors are real. Insurance will only pay for visits of a certain length. Full calendars are an incentive to hurry. They may think too much information will scare us.
Choosing your physician, your tango partner
Odds are that we’ll spend more time and effort selecting a contractor to build our kitchen or a mechanic to fix our car than we will in selecting our physicians. We’ll go to the one recommended by our regular ophthalmologist or a friend or the first one who is able to squeeze us into her calendar. And then we’ll put up with them even when something says, “Maybe this isn’t the doctor for me.”
Back to the tango
The difference between the tango and other dances is not in either the steps or the music. It is that the dancers are partners. The dance requires balance. There is improvisation because no two dancers or dance is the same. There is give-and-take communication. They are equals.
Choosing your partner
The dance begins with choosing your partner, your RS. You can check their credentials on your state medical board web site, PatientsRightToKnow.org, and the American Board of Medical Specialties.
Convenience
You might want to ask about appointment days and times. Are they convenient? What’s the cancellation policy? What about after-hours emergencies? What’s the average wait time? Does the doctor have an established network of trusted referrals for nutritionists, low vision specialists, optometrists? Remember staff and office.
Is the location convenient? I live in a place where there seems to be a retina specialist on every other block. That’s not always the case. And then communication. Does the doctor translate medical jargon into words you can understand? If she seems to be talking a foreign language, ask her for subtitles. For just like in the tango, information needs to flow back and forth.
It can make a difference
Sarah Krug’s mother and father died because their doctors didn’t listen to what they were telling them. It is likely you know someone who has had the same experience, who has gotten care that could have and should have been better.
We have a choice. We can be engaged patients. We can look for a retina specialist who wants to dance with us as a partner. Who wants someone who steps on our feet while trying to lead?
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