With the launch of its new website, SpeakSooner.org, the Bennington-based nonprofit Center for Communication in Medicine (CCM) hopes to help patients facing incurable illness arrive at doctors’ offices prepared to take a more active role in decisions about their own care.
Despite an ongoing dialogue within the healthcare field about the need to improve communication with patients, studies suggest that many patients still feel unable to ask questions and express concerns during office visits with their doctors. The SpeakSooner initiative aims to make these conversations easier and more meaningful through its interactive patient tool, the Difficult Conversations Workbook.
Developed in consultation with both providers and patients, the workbook combines writing prompts with video clips featuring real patients’ unscripted remarks about their experiences. Designed to identify misunderstandings and clarify patient needs and priorities, the workbook has been described as a “paradigm-changing” communication tool by physician Alexi Wright, of the Dana Farber Cancer Institute in Boston, MA.
The workbook offers a framework for exploring and discussing such hard-to-talk-about subjects as prognoses, coping with uncertainty, benefits and risks of treatment options, and quality of life issues—including considerations about palliative and end-of-life care.
The SpeakSooner initiative grew out of CCM’s founders’ years of firsthand experience working with patients, families and medical professionals, during which they observed that excluding the patient’s voice from the medical dialogue often resulted in unmet needs, increased suffering, and regrets for patients—as well as emotional strain for both personal and professional caregivers.
“Improving communication isn’t just critical for patients—it can also be invaluable to the professionals guiding their care,” remarked CCM founder Bernard Bandman, PhD, a clinical psychologist who has worked with patients and healthcare professionals for decades. Dr. Bandman explained that physicians and nurses working with the chronically and terminally ill face the stress of frequently delivering “bad news” and may worry they have failed to meet patients’ expectations. Open communication, which allows and encourages patients to be actively involved in discussing the risks and benefits of treatment options, can relieve some of the physician’s burden of responsibility for decision-making.
Oncologist Dr. Joseph O’Donnell, who helped implement the workbook in a pilot study at Vermont’s White River Junction VA Medical Center, said its use can help providers “get on the same page” as their patients.
“The Difficult Conversations Workbook can serve as an invitation from doctors to patients to share in the decision-making process,” explained CCM co-founder Celia Engel Bandman. Several years ago, at a regional cancer center in Vermont, Ms. Bandman conceived and implemented an innovative “Medical Humanist” pilot program in which patients’ questions and concerns were placed verbatim in their medical records so that providers could review and address them specifically. The Difficult Conversations Workbook synthesizes lessons learned from that pilot program so that patients everywhere can be empowered to have a greater voice in decisions about their care.
Early feedback for the workbook has been overwhelmingly positive. “The workbook is especially helpful in identifying a patient’s goals and allowing us to talk about them freely in order to create and develop a specific plan of care,” commented Dr. Mary Chamberlin, an oncologist with Springfield (VT) Hospital Cancer Center /Dartmouth Hitchcock Norris Cotton Cancer Center who has been involved with testing the workbook in clinical practice.
CCM’s Board President, David Schroedel, said of the SpeakSooner initiative, “Even with thirty years experience working in the healthcare field, I [have] found myself struggling mightily with impersonal clinical encounters with physicians…The transformation from person to patient can be both terrifying and all too often dehumanizing.” Schroedel described the workbook as a practical tool “for humanizing and strengthening the doctor-patient relationship.”
While CCM expects that some patients will seek out the workbook on their own, the organization’s vision is that medical providers will view introducing patients to the workbook’s contents as a way of signaling their willingness to have these conversations. Linda Emanuel, MD, PhD, Director of the Buehler Center for Aging, Health & Society at Northwestern University’s Feinberg School of Medicine, said she believes the workbook belongs in every waiting room and should be used by social workers, nurses, doctors and chaplains “as part of saying to the patient and family: ‘I am here; we can talk.’ ”
SpeakSooner.org will also be home to CCM’s new blog, “On Communication in Medicine,” where patients, family and healthcare professionals are invited to join a conversation about improving communication in healthcare delivery.
In addition to its interactive format, the workbook is available in a hard copy book and DVD set, and can be licensed for use by institutions seeking to improve communication with the patients in their care. All proceeds further CCM’s ongoing efforts to promote more effective communication in healthcare delivery.
Learn more, join in the discussion, and sample the Difficult Conversations Workbook for free at SpeakSooner.org.