What do patients want to know when told about a diagnosis of cancer—and how much do they want to know? These two questions form the basis for “shared decision making,” a term that implies both patient and physician are equal partners in treating the disease.
However, the equality of that conversation rests on a number of factors: an oncologist’s communication skills in delivering “bad” news; his or her ability to read a patient’s emotions and desire to be told what may represent excessive details, such as statistics; and, most importantly, on the language used.
“Shared decision making provides a framework for discussing options around treatment or subsequent care during which clinicians can engage patients in a conversation about their options,” Don S. Dizon, MD, Mary C. Politi, PhD, and Anthony L. Back, MD, wrote when describing an educational session they presented during the 2013 American Society of Clinical Oncology (ASCO) Annual Meeting.1
They drew on experiences with their own patients to illustrate the components of shared decision making, with an emphasis on “the power of words.” Oncologists are often guilty of allowing certain “verbiage to leak into clinical practice, where the connotation of ‘failure,’ ‘salvage,’ and ‘war’ can be devastating,”1 they write.
Drs. Dizon, Politi and Back created a “toolkit” for communication, as outlined in the box below. “These ‘toolkit’ skills are not innate but learned through modeling, practice, and feedback,” they noted.1
- Set a tone that invites participation
- Ensure a shared understanding of the past
- Outline treatment options
- Notice and respond to the patient’s emotions
- Acknowledge uncertainty
- Titrate information
- Ask what role the patient wants in decision making
- Incorporate patient concerns into the decision and offer to discuss prognostic information
- Make advance care planning a stepwise practice
“We recognize that all patients are different and that approaches should be individualized, to reflect each person’s needs (what they want to know) while respecting their limits (how much they want to know),” they added. “The way we communicate the what, when, and how of the clinical situation may touch our patients and their families long after their visits with us.”1
Steven J. Katz, MD, MPH, and Sarah Hawley, PhD, of the Departments of Medicine and Health Management and Policy at the University of Michigan, Ann Arbor, MI, emphasize that shared decision making should include a discussion of “the trade-offs between risk and benefits, and to incorporate patient values and preferences into treatment decisions.”2
Engaging Patients in Shared Decision Making
A recent Institute of Medicine report, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, of which ASCO was one of many study sponsors, outlined two goals for engaging patients. In the first goal, “the cancer care team should provide patients and their families with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support, and estimates of the total and out-of-pocket costs of care.” The second goal stated: “in the setting of advanced cancer, the cancer care team should provide patients with end-of-life care consistent with their needs, values, and preferences.”3
The report points to a survey that showed “people want involvement in evidence and decisions,” with the most responders strongly agreeing with the statement, “I want my provider to listen to me.” Additional statements responders strongly agreed with were “I want my provider to tell me the full truth about my diagnosis, even though it may be uncomfortable on unpleasant; to tell me about the risks associated with each option; and to explain how the options may impact my quality of life.” Less than 20% of respondents agreed that the provider should “offer only the options that he or she feels are right for me.”3
What the shared decision model offers is an opportunity for patients to come to terms with their disease and refuse treatments that may prolong life at an unwanted financial or quality of life expense, Dr. Dizon told ChemotherapyAdvisor.com. Dr. Dizon is the Director of the Oncology Sexual Health Clinic and Assistant in Medicine at the Massachusetts General Hospital Cancer Center, as well as a member of the ASCO Cancer Communications Committee and Editor of the Annual Meeting Educational Book.
However, one assumption is that the patient speaks the same language as the oncologist. Dr. Dizon recalls he once told a patient her breast cancer generally required adjuvant chemotherapy, and then he named the agents. She replied, “I have no idea what you just said.” This is a prime example of how patients may not quite understand how the oncologist relays information. Therefore, it is important for oncologists to determine whether the way in information is conveyed to patients is, in fact, the most effective.
Deciphering Oncology “Code Words” for Patients
In addition to the complexities of oncologic language, there are particular nuances that come with certain words; for example, the word “palliative” can mean different things to different patients.
According to Dr. Dizon, “The whole language of palliative and end-of-life care is in flux.” He added that how much of that perception has infiltrated practitioner communities, patients, and the general public remains unknown. The National Comprehensive Cancer Network Guidelines for Palliative Care acknowledges that confusion exists regarding the definition of palliative care: “to some, palliative care still refers only to care given at the end of life, leading to an inappropriate association of palliative care with death.”4
The Institute of Medicine report recommends incorporating palliative care across the care continuum, beginning with a diagnosis of cancer.3 ASCO defines palliative care as “the integration into cancer care of therapies that address the multiple issues that cause suffering for patients and their families and impact their life quality. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near.”5
In the shared decision making model, this has relevance in that “some studies have suggested that many patients have unrealistically high expectations about medical treatments,” Drs. Katz and Hawley write.
And, increasingly, patients are becoming more “discriminating consumers” in shouldering more of their own costs.
“As patients become more sophisticated purchasers of health care, they will push competition in health care delivery to look increasingly like that in consumer-goods industries,” Robert S. Huckman, PhD, of the Harvard Business School and the National Bureau of Economic Research and Mark A. Kelley, MD, of the Advanced Leadership Initiative, Harvard University, both in Cambridge, MA, write in The New England Journal of Medicine. “This competition could lead to product offerings that appeal to consumers with different needs. While some patients may seek greater odds of survival, others may seek a faster return to work or lower out-of-pocket costs. These options are at the core of ‘patient-centered’ care.”6
Dr. Dizon said he has already had these conversations. When a patient was asked to decide whether to undergo a treatment costing $24,000 out-of-pocket for which a benefit might not be known for months, her answer was “no.”
However, after informing a patient of a diagnosis of cancer and various options, rather than requesting an immediate answer, he or she should be allowed time to reflect on the information provided. This will ensure that “patient values about the benefits and risks of different treatment options are elicited, explicitly understood, and incorporated into decisions”—a key objective of shared decision making, according to Drs. Katz and Hawley.2
1) Dizon DS, Politi MC, Back AL. The power of words: discussing decision making and prognosis. 2013 ASCO Educational Book. Available at: http://meetinglibrary.asco.org/content/242-132. Accessed October 23, 2013.
2) Katz SJ, Hawley S. The value of sharing treatment decision making with patients: expecting too much? JAMA. 2013 Oct 16;310(15):1559-60
3) Institute of Medicine of the National Academies. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academy of Sciences; 2013.
4) National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology. Palliative Care. Version 2.2013.
5) Ferris FD, Bruera E, Cherny N, et al. Palliative cancer care a decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. J Clin Oncol. 2009;27:3052-3058.
6) Huckman RS, Kelley MA. Public reporting, consumerism, and patient empowerment. N Engl J Med. 2013 Oct 16. [Epub ahead of print]