Since 2004, Bill Lee has had 10 heart attacks. That's not a typo: 10 heart attacks in 7 years.
He has coronary artery disease. Oh, and he's diabetic.
A few years ago, he was lying in a hospital bed after his seventh heart attack and his doctors told him, "There's nothing else we can do for you. You are just going to keep having heart attacks."
"That's not acceptable to me," he said. "I'm not going to accept your diagnosis and your prognosis."
From that moment, Lee took it upon himself to become an informed patient. He researched his conditions. He made a list of questions before every doctor's appointment and, importantly, he asked them. That was a new behavior for Lee. He used to be like so many of us, just accepting what the doctor said and taking his medicine, no questions asked.
Lee's compelling story is featured on a new website, "Questions are the Answer." Developed in partnership between the Agency for Healthcare Research and Quality and the Ad Council, the site is aimed at providers and patients, encouraging them to become more engaged in two-way communication.
"We know that when patients and clinicians communicate well, care is better. But in today's fast-paced health care system, good communication isn't always the norm," AHRQ Director Carolyn Clancy said in a statement. "This campaign reminds us all that effective communication between patients and their health care team is important and that it is possible — even when time is limited."
The AHRQ site, unveiled on Tuesday, contains a host of tools including one that lets patients create and prioritize a list of questions. Hospitals wanting to do a better job of promoting two-way communication can co-brand materials from the site.
Matthew and Carolyn Bucksbaum, meanwhile, are putting up $42 million to ensure that their home hospital, the University of Chicago Medical Center, bolsters doctor-patient communication. Matthew Bucksbaum is CEO of shopping mall behemoth General Growth Properties. The Bucksbaum Institute will "train medical students and faculty who, in turn, can serve as role models in communication and shared decision-making."
Of course, it is one thing to put up millions in the hopes that folks adopt shared decision-making, it's entirely another for that to become a reality. The National Institute for Health Care Reform on Tuesday issued a very insightful report detailing the many barriers to shared decision-making. The report, authored by researchers at the Center for Studying Health System Change and Mathematica Policy Research, also offers an array of policy solutions.
Shared decision making is slightly different from two-way communication. The latter can — should, I would argue — be used in any situation. Shared decision-making is typically used for "common health problems" for which there is more than one "medically acceptable treatment option," according to the NIHCR report. The idea is that an informed patient will work with his or her doctor to choose the best care for their particular case.
The authors note, however, that there are many roadblocks: an arcane payment system, clinicians poorly trained in the art of shared decision-making, malpractice concerns, low health literacy among patients, and, not insignificantly, "political hyperbole" that "can stifle discussion and support for shared decision-making." Think back to the arguments on end-of-life care during the health reform debate.
The report, however, points out that both the health reform and stimulus laws elevate shared decision-making through the promotion of patient-centered medical homes, the creation of the Patient-Centered Outcomes Research Institute and more.
But the authors suggest that we need not wait around for elements of those laws to take hold. No, there are some real solutions that could advance shared decision-making right now:
- Reward providers. While providers wait for a shift from fee for service, CPT codes could be revised to pay for shared decision-making activity.
- Do a better job of promoting and teaching the concept in medical school and create some continuing medical education programs.
- Address liability concerns. In Washington, for instance, there are legal protections for physicians who engage in shared decision-making.
- Provide patients with more tools/aids.
- Tap into the power of electronic health and personal health records.
The shift to accountable care, the medical home, whatever catch phrase you want to use, hinges on the patient (and family) becoming an active participant in the care process. I know this all too well right now. I have a family member undergoing intense treatment for Stage 3 esophageal cancer. He is not a very good patient advocate, but his daughters are and they accompany him to every doctor's appointment armed with questions. Thankfully, his physicians are welcoming of their input and are fully engaged in a dialogue about his treatment plan. Can you say the same about your doctors?
I welcome your thoughts. Email me at email@example.com.
Matthew Weinstock is the Senior Editor of Hospitals & Health Networks magazine.