Featured Guest Blogger: Joanne Schwartzberg, M.D.
We have set ourselves a very high bar. We are seeking to achieve shared decision making in which patients (and their families if so desired) have the opportunity to be fully informed about their conditions, about the medical evidence behind the various choices for treatment, and the risks and benefits both short and long-term. At the same time, patients must have the opportunity to express their concerns, fears and preferences to ensure that their views and values will be incorporated in the final determinations of their treatment plans.
A recent IOM survey found that while 80% of the patients wanted their physicians to listen to them during the decision making process, 40% said their doctors did not listen to them, 53% said their doctors did not take into account their goals and concerns, and less that 40% agreed that their doctors clearly explained the medical evidence, the risks, and the treatment choices.(1) (Alston C, Paget L, Halvorson G, Novelli B et al, 2012. Communicating with Patients on Health Care Evidence. Discussion Paper, Institute of Medicine, Washington, DC.).
Conducting discussions with patients that lead to genuine shared decision making is clearly challenging. There are two main steps that need to be completed before these discussions and decisions can really take place. The first is for the clinician to provide the information in a way that the patient can fully understand and use/apply to their individual situation as the background for decision making. The second is for the clinician to learn from the patient their response to the new information, their concerns, their vision of how the processes discussed might affect their own and their family’s lives and well-being, the values they wish to see respected not only in the current decision but throughout their continuing care.
While much work has been done in the development of decision aids, both printed and multimedia, to help physicians meet the first step and ensure that their patients understand the complexities of their medical situations and the choices they face, many of these aids anticipate a highly literate audience and provide additional challenges for patients with limited literacy.
There is an urgent need for more research and development of materials that will meet the needs of patients with limited literacy (who have higher rates of illness and chronic disease, longer and more frequent hospitalizations, and poorer health outcomes).(2) (McCaffery KJ, Smith SK, Wolf M, 2010.The Challenge of Shared Decision Making Among Patients With Lower Literacy: A Framework for Research and Development. Med Decision Making 30:35-44).
While multimedia programs are attractive for patients, and provide the opportunity to go at one’s own pace, review and repeat as needed, etc., it is interesting that patients surveyed by IOM, felt their clinician’s in person, face-to-face communication skills were more important. After reviewing the educational materials, patients need to have a face-to-face visit, in which they can review what they have learned, ask questions about puzzling aspects, and reassure themselves and their physicians that they really understand (teach back).
The second background step in the shared decision making process is when the physician opens up the discussion to learn more about the patient’s feelings, beliefs, values. For example, the physician can say:
We have covered a lot of information, but now I’d like to know your thoughts about the decisions and path we should be taking.
Have you or someone close to you ever faced a similar situation? If yes, how was it handled and looking back on it, what have you learned?
How will your life change, and how will you manage it?
Many physicians are uncomfortable having these discussions. They regard it as opening up Pandora’s box, with no clear idea what they will hear, how to tie the information into the decision about treatment, or how to bring the discussion to a closure.
Patients are also uncomfortable raising some of these concerns, but that is also what they want to do when they say they want their physician to “listen to them.” While the Kleenex box on the desk may come into use, patients are very sensitive not to take too much time. So there is an opportunity for the physician to bring reassurance and closure with a form of “teach back.” The physician can say:
Thank you for helping me understand. You’ve mentioned several things we need to keep in mind as we proceed. Let me try to summarize them…
The great uncertainties about many of the decisions that have to be made leave us all vulnerable, both physicians and patients. The desire for genuine shared decision making springs from this vulnerability. “Teach back” is not a panacea to meeting the bar we have set for ourselves. But it is a simple and effective tool to create an environment of mutual understanding and mutual trust.
About the Author:
Joanne Schwartzberg, M.D. organized physician awareness campaigns based on the AMA’s Health Literacy Introductory Kit and later developed Health Literacy: Help Your Patients Understand self-study educational programs and the Health Literacy and Patient Safety programs and materials. She led the AMA Foundation’s Health Literacy Training of Trainers program, which reached over 30,000 health professionals. She organized the AMA ad hoc committee of experts that developed Health Literacy: Report of the Council on Scientific Affairs, and is the Director of Aging and Community Health at the American Medical Association.