This first appeared on PharmaPhorum. I remember the first time I fired a doctor. It was 2003, and I was pregnant. There were myriad issues I wanted to discuss with the Ob-Gyn during the first visit but couldn’t. Not only did he rush me through the appointment, but also wouldn’t address many of my concerns. I walked out the door and left the practice forever, but not without writing a letter detailing why he’d never see me again. At the time, I didn’t consider myself an engaged patient (didn’t even know there was such a thing), simply a person with strong beliefs that my questions were important and should not be dismissed.
Fast forward to 2013 and there are plenty of like-minded people who are e-patients: equipped, enabled, empowered and engaged in their health and healthcare decisions (Dr. Tom Ferguson’s definition – a founder of the e-patient movement). They are eager to be participants in their care, not simply recipients of directives from healthcare providers.
Today it is relatively easy to acquire medical knowledge through health portals, hospital sites, social networks, blogs and even scholarly publications. Study after study confirms that individuals are actively consuming information about diseases, drugs, therapies and treatments. They are hungry for insights that will help them manage their conditions and lead better lives. For patients the biggest challenge isn’t lack of information, it’s their inability to discuss what they find with those they want to trust most – their physicians.
A recent study conducted by researchers at the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science (published in May 2012 issue of Health Affairs) underscores this problem. The investigators set out to understand the barriers to shared-decision making between patient and physician and uncovered surprising findings. In theory, patients wanted to engage in a dialogue about their treatment options, but in practice they were scared to do so. They feared being labeled difficult, uncooperative and too assertive. They didn’t want to create a stressful situation with their doctor.
This phenomenon is not exclusive to the general patient population. Even the most vocal patients share these concerns, especially those with chronic conditions. Kelly Young is a well-known patient advocate who blogs at Rheumatoid Arthritis Warrior and tweets as @RAWarrior. She hears from followers regularly who are afraid to challenge their physicians’ views and recommendations. They are reluctant to reveal the full extent of their problems with their doctors because they fear being branded hysterical or a hypochondriac. “We may have a list of ten things we’d like to discuss during a visit, but edit it down to the two or three we must address. There are many concerns that you share, and lots of information that you don’t.”
A physician who follows Kelly was wavering about providing his email address to patients. He finally relented and was amazed by the results, but not because his inbox was inundated with messages. Not one patient abused the privilege, but those who did write told him many things they had never shared during in-person visits. It was eye-opening.
The Palo Alto study also cited “authoritarian physicians” as a factor. Dr. Jessie Gruman, president of the Center for Advancing Health, is a nationally recognized expert on patient engagement as well as four-time cancer survivor. She sees this behavior frequently. “How likely is it that we are going to engage in our healthcare if our clinicians don’t answer questions, if we are dismissed by them and they treat us disrespectfully?”
Shelly Lowe, a leader on a Multiple Sclerosis forum, indicated that many patients turn to online peer groups for just this reason. “Patients come here and want to know why they were diagnosed with MS, why their neurologists are not taking them seriously, why they’re left not knowing what’s going on”.
So how do we move to a healthier physician-patient relationship? Start by examining communication patterns and addressing the gaps, recommends Dr. Meredith Gould, a sociologist by training whose work focuses, in part, on developing ways to create communications between physicians and patients.“If you don’t understand how people learn and communicate, it will never work. There is confusion between authoritative with authoritarian. They are not the same.”
Communication skills have been largely undervalued in medical education. The Physician Leadership Forum, a special interest group within the American Hospital Association, issued a white paper in June detailing the competencies physicians will need in order to succeed under health reform and new care models being implemented in the United States (Affordable Care Act). Interpersonal and communication skills stood out among the most important but least advanced in today’s medical environment. Specifically cited as areas of weakness were empathy, emotional intelligence, conflict management and understanding of cultural and economic diversity.
As a place to begin, task force members felt that communications—both effective information exchange and working effectively with the health care team—are essential to the delivery of health care in a safe and efficient manner and should be emphasized in every interaction. While physicians are armed with a strong technical knowledge, as well as a capacity to absorb large amounts of information, historically, medical training and residency programs have not valued the full scope of competencies.
Dr. Val Jones, a rehabilitation medicine specialist and long-time blogger at Get Better Health, published a funny, poignant and instructive piece called In Defense of Doctors: Why We Act Like Jerks, and How to Handle Us When We Do. In it she delves into the psycho-social issues that lead some doctors to adopt an off-putting manner, exhaustion and fear or failure among them.
At the same time, Dr. Jones recommends that patients examine their own behavior if they seek a collaborative relationship. They should come prepared for their visit and adhere to the treatment agreed upon, they should avoid bringing extraneous materials and it’s never a good idea to mention lawsuits.
Both sides have plenty of work to do to evolve the patient-physician relationship. But as Kelly Young wisely points out, “It’s important we avoid portraying the situation as doctor vs. patient. We need to work together. The enemy is the disease, not each other.”