What Oncologist Says Differs From What Patients Hear

Kristin Jenkins

July 19, 2016

When it comes to understanding survival prognosis and treatment trade-offs near the end of life, patients with advanced cancer and their physicians do not appear to be on the same page.

A cross-sectional analysis of 236 patients and 38 oncologists shows that 68% of patients with incurable cancer held opinions about their survival prognosis that differed from those of their oncologist. What's more, only 1 in 10 patients knew they did not have the same understanding.

The analysis was published online July 14 in JAMA Oncology.

These findings have serious implications for shared decision-making as death approaches, say the authors, led by Robert Gramling, MD, DSc, of the Division of Palliative Medicine at the University of Vermont Medical Center in Burlington.

"Our findings suggest that patient-oncologist prognostic discordance is common in advanced cancer and that it is usually due to patients not knowing their oncologists' prognosis opinions," the team reports.

These findings are consistent with previous literature, Dr Gramling said in an interview, but he said he was surprised to find that so few instances of prognostic discordance were the result of patients simply disagreeing with the oncologist.

"Known discordance" can lead to shared decision making, but "unknown discordance" is suggestive of failed communication, explained Dr Gramling, who is also the Holly and Bob Miller Chair in Palliative Medicine at the University of Vermont.

"This high rate of unknowingly discordant expectations highlights the need for our modern medical system to understand how best to support meaningful prognosis communication between patients and doctors in serious illness," he told Medscape Medical News in an email.

There are at least two important considerations, Dr Gramling commented. First, prognosis communication is about duration of life as well as "what to expect for that remaining life and how medical treatment options might influence these expectations."

Second, prognosis communication is a dynamic and relational process, not a one-time, one-way disclosure of information. "Two-way sharing of information — patients' insights about themselves and clinicians' insights about the medical science — can help lead to meaningful contemplation of what to expect and sharing of related decisions," Gramling emphasized.

What Doctors Say, What Patients Hear

Approached for comment, Stephen B. Edge, MD, said the findings provide further evidence that physicians and patients often have different perceptions of their discussions about cancer prognosis, as well as different understanding about the outcome of care.

Dr Edge is vice-president of healthcare outcomes and policy and professor of oncology at Roswell Park Cancer Institute in Buffalo, New York, and professor of surgery at the University at Buffalo.

The physician may believe that he or she has effectively communicated that treatment may prolong life or improve the quality of life but that it is not curative, Dr Edge explained. On the other hand, the patient may come away from the conversation thinking that the treatment is of value and could lead to living longer or even being cured.

 
At some point, doctors hear what they think they said, and patients selectively hear what they want. Dr Stephen Edge
 

"At some point, doctors hear what they think they said, and patients selectively hear what they want," he told Medscape Medical News.

Dr Edge also made the point that "the authors of this paper clearly acknowledge that the issue of communication is two-sided and not solely the physicians' inability to communicate effectively."

 
I would hope that no one would be surprised by these results. Dr Alan Valentine
 

"I would hope that no one would be surprised by these results," said Alan D. Valentine, MD, professor and chair of the Department of Psychiatry at the University of Texas MD Anderson Cancer Center in Houston, when asked to comment on the analysis.

"We should just assume there's not [concordance] and plan accordingly," he told Medscape Medical News.

For Dr Valentine, the recent death of his father from lung cancer brought home the issue in a very personal way. "We did not get him into palliative care early enough," he said. "If I'm messing up with my own family, imagine what it is like out in the world?"

Until the work is done to improve these emotionally charged conversations, changing the culture will take time, "like water seeping into a rock," Dr Valentine said.

Bottom line? Don't take it for granted that your patients are on the same page as you are following a discussion of prognosis, warns Walter F. Baile, MD, professor of behavioral science and psychiatry and director of the Program for Interpersonal Communication and Relationship Enhancement (I*CARE) at MD Anderson.

"We should also acknowledge that it can be frustrating for oncologists and others caring for seriously ill patients to think that they clearly informed the patient about their prognosis but the patient still does not understand," Dr Baile told Medscape Medical News.

Discussion of prognosis can be fraught with a number of pitfalls, not the least of which is the power of denial, or "the drive to be optimistic in the face of disaster," Dr Baile said.

Ideally, conversations about prognosis should be conducted in the context of the goals of care and the personal values of the patient. This way, the conversation can focus on what is important to the patient in the time left rather than how long he or she has to live.

There are resources for physicians on how to do this effectively, Dr Baile noted. "This conversation, when done in the context of goals of care, can allay anxieties about pain, hospice, abandonment, and other issues and solidify the relationship with the clinician so that they are seen as a source of emotional support," he told Medscape Medical News.

"Accepting a poor prognosis may also be a process that occurs over time," Dr Baile pointed out.

Next time you see your patient, check in with him or her and go over the goals of care. This will provide "an opportunity to revisit prognosis and goals of care so that patient understanding can be assessed," said Dr Baile.

Details of the Results

For their analysis, Dr Gramling and colleagues pooled data from the two arms of the Values and Options in the Cancer Experience (VOICE) trial to evaluate a communication intervention. Enrollment took place from August 2012 to June 2014 at hospital- and community-based outpatient oncology practices in Rochester, New York, and Sacramento, California. Patients were followed until October 2015.

Questionnaires about patient and oncologist visits were used to rate 2-year survival probability in patients who were not expected to live for another 5 years. The mean age of the patients was 64.5 years; 54% were women.

Because prognostic discordance did not differ by study arm (68.7% for the intervention arm vs 67.7% for the usual care arm; P = .87), all participants were asked, "What do you believe are the chances that you will live for 2 years or more?"

Oncologists were asked, "What do you believe are the chances that this patient will live for 2 years or more?"

A difference in more than one category between the patients' ratings and those of their physician was defined as prognostic discordance.

In addition, all patients were asked, "What do you believe your doctor believes are the chances that you will live for 2 years or more?" Those who were off by two categories or who answered, "I don't know," were classified as not knowing.

Among 161 patients with discordant views, 96% rated their prognosis more optimistically than their physicians, and 89% did not know that their opinions differed from those of their oncologists.

The discordance rate was particularly high among black and Hispanic patients (95%, P=.03). "[O]ur findings are consistent with previous literature documenting suboptimal communication between physicians (usually white) and nonwhite patients who are seriously ill," the researchers write.

A total of 99% of the patients with discordant views said they wished to be involved in decision-making for their own treatment.

The authors write that their study "supports the urgent clinical and societal need to better understand what it means to communicate well about prognosis to achieve treatment that honors patients' values, preferences, and wishes."

Other work has shown that communicating prognosis is not just about exchanging information, the researchers note. It is an affective form of communication that "occurs amid substantial uncertainty, confusion, and often terror," Dr Gramling and colleagues write.

Similar work in palliative care settings shows that communicating survival prognosis is a complex and relational process linked closely with conversation about treatment goals and personal values, they point out.

Clear Evidence of the Need to Improve

This study "provides clear evidence of the ongoing need for improved communication in the context of advanced cancer," say Jeffrey D. Robinson, PhD, and Reshma Jagsi, MD, DPhil, in an accompanying editorial.

"After all, promoting more realistic prognostic estimates is a critical step toward improving patients' quality of life and preference-concordant illness management decisions, including the reduction of overly aggressive treatments that many patients will otherwise continue to receive," they add.

Dr Robinson is with the Department of Communication at Portland State University, Oregon, and the Department of Radiation Medicine at the Oregon Health and Science University. Dr Jagsi is with the Department of Radiation Oncology at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan, Ann Arbor.

The editorialists point out that the National Cancer Institute, the Institute of Medicine, and the American Society for Clinical Oncology "all call for improved communication with patients with incurable, life-limiting illnesses."

Aggressive treatments can compromise quality of life at the end of life, yet physicians are biased against delivering bad news — unless it is in an indirect, ambiguous manner that preserves patients' hope, Dr Robinson said in an interview.

"Physicians need improved communication strategies for making their prognostic estimates clear to patients while remaining sensitive to patients' desires for different types and amounts of prognostic information," he told Medscape Medical News.

Understanding the detailed mechanics of doctor-patient communication will help improve shared decision-making near the end of life, he said. However, this will mean "moving beyond asking physicians and patients about their communication behavior after the fact to actually videotaping it," he suggested.

The study was supported by the National Cancer Institute and the National Institutes of Health. The authors and editorialists have disclosed no relevant financial relationships.

JAMA Oncol. Published online 14 July 19, 2016. Full text, Editorial

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