A recent article published in The New England Journal of Medicine, highlights the benefits of shared decision making and how it improves the quality of medical care and reduces cost.
Based on a partnership between the patient and medical provider, shared decision making is a core component of patient-centered care. Both parties share information—the medical provider offers evidence based treatment options and their risks and benefits and the patient offers his/her experience with the medical condition, preferences, risk tolerance, cultural orientation and more. Both medical provider and patient come to a mutual agreement on the course of action.
This takes some change in attitude on the part of patients and medical providers. We are beyond paternalism in medical care, but have we yet arrived at what supports shared decision making?
The Affordable Care Act (ACA) encourages shared decision making and patient-centered care. Even though change is underway, I have to wonder if we aren’t missing an important core element that supports making joint decisions—the relationship between medical provider and patient.
When I was suffering with a severe chronic pain condition for 16 months and saw 11 physicians and three alternative medicine practitioners in effort to find an accurate diagnosis and treatment plan, I have to wonder how much collaborating and joint decision making I was doing as a patient. In retrospect, it depended on my experience with the doctor. Only three out of 11 physicians were invested in that kind of partnership. And I believe the only reason those three and I we were successful at forming partnerships and engaging in shared decision making was because of our relationships. Those relationships were about mutual respect, empathy, active listening, active participation, and mutual education—the physicians educated me about tests, procedures, medications, possible diagnoses, and I educated them about my experience with the chronic pain, my preferences, beliefs, tolerance to risk and more.
Eight of the 11 doctors I saw during those 16 months were rooted in more of an authoritarian role. I was intimidated by their approach. Like so many patients who walk into an exam room and are met by a doctor who is rushed, doesn’t look them in the eye, doesn’t treat them as an equal (one with different expertise) or true respect, I too shrank and found it difficult to effectively participate in my care. With most of them, I tried to even the playing field, coming prepared to office visits with my “Patient’s Toolkit,” my list of questions, detailed symptoms, copies of my medical records, and credible research. But most of those doctors weren’t interested in a collaborative relationship so there was little or no shared decision making. They wanted to assess my symptoms, perform an exam, do a few tests, and then tell me what they thought I had.
In each case they were wrong.
Perhaps paternalism in medicine isn’t dead after all.
The longer I endured the pain, which had severely compromised my life, the more medical providers I saw, the more research I did on my own, and the more I changed how I behaved as a patient. It didn’t hurt that I had done over 200 interviews with physicians and other medical providers for my latest book, The Take-Charge Patient: How You Can Get The Best Medical Care.
15 months into my chronic pain condition, I stumbled upon my own diagnosis in an article published in The New York Times, In Women, Hernias May Be Hidden Agony A woman was depicted with symptoms exactly like mine and the surgeon and hernia specialist who cured her happened to be at a teaching hospital in Los Angeles. By the time I met with Dr. Shirin Towfigh, I was tearful and bent over in pain. I told her my story. She listened. She asked questions. She showed empathy. She took me seriously. Dr. Towfigh treated me with respect when I presented the article and asked if it was possible that I might have hernias with nerves protruding through the holes just like the woman described in the article. We had a mutual discussion. She brought her expertise as a surgeon and hernia specialist to the table, and I brought my experience with my chronic pelvic pain.
After doing a thorough exam, Dr. Towfigh ordered a dynamic, high resolution MRI. Sure enough, she found hernias. It wasn’t until after the three-hour surgery, that she explained that I had a muscle tear in my C-section site with possible nerve involvement, an inguinal hernia with a nerve passing through the hole, and two belly-button hernias left over from my pregnancy. I have been pain free for over a year and a half.
What is so important to remember about shared decision making, is that it is not just about medical provider and patient sharing information, having a mutual discussion that includes the patient’s preferences, cultural orientation and experience with a medical condition. It is about the relationship. The relationship between medical provider and patient must be a successful one with good communication, mutual respect, mutual understanding, and positive regard from both parties. Then shared decision making works.
There are two very important components to a successful relationship between doctor and patient. If one or both is absent, then the collaboration falls apart. For example, if the doctor does not respect the patient or is too hurried to show interest and genuine care, then it’s much more difficult for shared decision making to occur. Or if the patient is not engaged in his or her health care, is not an active participant, isn’t proactive but passive, then the shared decision making is nearly impossible. For more information on how to be an engaged, proactive patient, see www.thetakechargepatient.com
Maybe instead of questioning why the concept of shared decision making isn’t moving along fast enough because ACA isn’t providing enough incentive, or because medical providers are afraid that it will take up too much time, maybe we should be focusing our energies on educating patients and medical providers on how to form successful, collaborative relationships. Maybe then progress with shared decision making would speed up. Maybe then we would see faster advancement in what is truly a successful tool to increase quality of care, increase patient safety, and reduce cost.
Here’s a good example of a patient’s experience with shared decision making at Mayo Clinic.
For more information, please visit www.thetakechargepatient.com