Breaking the ‘Conspiracy of Silence’

New studies show startling results about why patients with advanced cancer have a poor understanding of their prognosis and how it may compromise their end-of-life care.


Get Permission


We were shocked to find only 5% of patients responded correctly to all four questions, which would imply they had sufficient knowledge about their illness to make informed decisions about their care.
— Holly Prigerson, PhD

A new study1 showing that just 1 in 20 terminally ill patients with cancer has sufficient understanding about the prognosis or purpose of treatment is highlighting the need for improvements in both the way oncologists communicate prognosis with their patients and in the development of educational aids to better prepare patients for their end-of-life decision-making.

The study, which is part of Coping with Cancer II, a National Cancer Institute–funded prospective cohort study examining end-of-life communication processes, involved interviews with 178 patients with advanced gastrointestinal, thoracic, or gynecologic cancer whose disease had progressed on prior chemotherapy regimens and whom oncologists expected to die within 6 months. The patients were asked about their understanding of their illness before and after undergoing restaging scans and before and after discussing the results in the clinic. The patients’ scores were determined by their response to four questions assessing their terminal illness acknowledgment; recognition of their incurable disease status; knowledge of the advanced stage of their disease; and expectation to live months as opposed to years.

Only 5% of the study patients had a completely accurate understanding of their illness. A total of 10% of respondents reported only recent discussions of prognosis/life expectancy with their oncologist; 38% had only past discussions; 13% reported having both recent and past discussions; and 38% said they had never had discussions about their prognosis/life expectancy with their oncologist.

“We were shocked to find only 5% of patients responded correctly to all four questions, which would imply they had sufficient knowledge about their illness to make informed decisions about their care,” said study author Holly Prigerson, PhD, Irving Sherwood Wright Professor in Geriatrics, Professor of Sociology in Medicine, and Director of the Center for Research on End of Life Care at Weill Cornell Medicine.

Conveying Both Hope and Realism

Nearly as shocking is the large percentage of patients, 38%, who reported never having had a discussion with their oncologist about their life expectancy. “Denial, or more specifically what psychologists term “experiential avoidance,” is a powerful psychological and behavioral response that undermines the ability to engage in frank discussions; it interferes with accurately talking about and hearing threatening news, especially life-threatening news. This is not a conversation anyone wants to have, so it’s easier—for both the oncologist and the patient—to focus on hope and rosy expectations and what may be hype regarding expected treatment outcomes rather than talk about brutal truths of a poor prognosis. The fear of making patients feel hopeless gets in the way of realism and, as a consequence, denies patients the right to make informed choices about how they want to live their final months. It is a ‘conspiracy of silence,’” said Dr. Prigerson.

According to Dr. Prigerson’s study, using statements that convey both hope and realism, such as “we’re hoping for the best” (years of survival) “while being prepared for the worst” (months to live), during ongoing discussions about prognosis may be one way to strike a balance and hone the message. But the bottom line, continued Dr. Prigerson, is that “oncologists know their patients are dying, and the patients should know it, too. It is dishonest not to impart realistic expectations.”

Online resources such as Oncotalk (http://depts.washington.edu/oncotalk) are designed to build oncologists’ communication skills to help them deliver a terminal cancer prognosis to patients and their loved ones accurately and compassionately. However, no matter how well the message is delivered, the news may still be received as unsympathetic and the oncologist’s judgment deemed untrustworthy.

Eduardo Bruera, MD

Eduardo Bruera, MD

A study2 by Eduardo Bruera, MD, Chair of the Department of Palliative Care and Rehabilitation Medicine at The University of Texas MD Anderson Cancer Center, and his colleagues compared patients’ perceptions of physicians’ compassion after watching video vignettes of two physicians conveying a more optimistic vs a less optimistic message. In the less optimistic video, the patient was given explicit information about the lack of additional treatment options. In the more optimistic video, the patient was given vague information about possible future treatments if the patient’s functional status improved within the next few days.

The study findings showed that the patients watching the more optimistic video had a significantly higher perceived level of physician compassion and preferred physicians who provided a more optimistic message. In addition, a higher perception of compassion was also associated with greater trust in the medical profession independent of the type of message delivered.

Desire to Beat the Odds


I think patients sometimes prefer not to engage, and that is an issue we all need to consider. Doctors can do a better job of eliciting patients’ preferences and values surrounding end-of-life care, which is almost more important than communicating prognosis per se.
— Wen-Ying Sylvia Chou, PhD, MPH

“We all want to live longer and feel like we could be that exceptional responder and beat the odds. And it is easy to put a lot of hope on that possibility,” said Wen-Ying Sylvia Chou, PhD, MPH, Program Director, Health Communication and Informatics Research Branch, Division of Cancer Control and Populations Sciences, National Cancer Institute. “I think patients sometimes prefer not to engage, and that is an issue we all need to consider. Doctors can do a better job of eliciting patients’ preferences and values surrounding end-of-life care, which is almost more important than communicating prognosis per se.”

In a study led by Dr. Chou, but not yet published, an analysis of transcripts of discussions about prognosis and treatment goals between oncologists and patients with stage III and IV cancer shows that prognosis is barely mentioned, and the language used to describe the state of the patient’s illness is often inexact. “We found the use of a lot of indirect and ambiguous words in these conversations,” said Dr. Chou. “For example, in the case of a patient with stage IV lung cancer, the doctor described a treatment he was recommending, and it is unclear whether the treatment was intended for palliation or cure. However, often patients hear the word ‘treatment’ and interpret it differently from what the physician meant, so there was inherent ambiguity in his discussion with the patient. And, generally, there was very little time spent on prognosis. The patient and physician talked briefly about prognosis and then moved on to the logistics of the treatment plan.”

Messenger Influences Understanding of Prognosis

A follow-up analysis3 of Dr. ­Prigerson’s study examined whether patients’ understanding of their prognosis varied depending on whom they discussed their restaging scan results with—an oncologist or another member of the care team. The investigators found that who delivered the message influenced patients’ prognostic understanding post-scan. Patients who reported discussing their scan results with an oncologist were approximately four times more likely to recognize their cancer was at a late- or end-stage than those who discussed their restaging scan results with another member of the care team.

“This analysis showed that patients understood the information about their restaging scans much better when it was delivered by an oncologist, rather than a fellow or nurse practitioner. So oncologists need to have these conversations with their patients and preferably to discuss prognosis continuously as it changes over the course of the disease,” revealed Dr. Prigerson.

Race and Estimates of Life Expectancy

The results from another recent Coping with Cancer study4 by Dr. Prigerson and her colleagues found that most patients with advanced cancer have an inaccurate understanding of their life expectancy, and the discrepancy is greater among African American patients than white patients. The study examined the source of information about the survival expectations of 229 patients—31 black and 198 white—with advanced cancer and whether the source of information explained racial disparities in the accuracy of patients’ life expectancy estimates. According to the study results, 39.3% of patients estimated their life expectancy within 12 months of actual survival, and 18.3% reported that a medical provider was the source of their life expectancy estimates.

Among the most troubling findings of the study is that none of the black patients based their survival estimate on information obtained from a medical provider. Even after the study analysis had been controlled for sociodemographic characteristics and the source of life expectancy estimates, being black remained a significant predictor of an inaccurate life expectancy estimate.

“We know from this study and other studies that even when physicians explain prognosis to patients with advanced cancer, black patients are less likely to acknowledge that they have a terminal illness and a short life expectancy, more so than white patients. As a result, they are not signing a do-not-resuscitate order and, perhaps as a consequence, are dying at much higher rates in the intensive care unit than their white counterparts,” said Dr. Prigerson.

To address the ethnic and racial differences in advanced cancer patients’ understanding of their disease and life expectancy and ensure their end-of-life care goals and treatment decision-making are based on accurate information, Dr. Prigerson is developing interventional videos called Know Harm Video Testimonials. The videos, which will be part of a new randomized study funded by the National Cancer Institute, will show patients with advanced cancer and their family members talking about the impact terminal cancer and its treatment have had on their quality of life. The study will then examine how these patient testimonials influence the decisions of patients viewing the videos, who may be more inclined to accept information about death from patients like themselves.

“I believe the results from this study can be practice-changing, because relying exclusively on oncologists to communicate very bad news to patients is not increasing patients’ understanding of their realistic life expectancy,” said Dr. Prigerson. “We want to study whether black patients in this circumstance are more likely to take to heart and trust information shared by other black patients in a similar situation and enable them to make a more informed decision about how they wish to spend the remainder of their life: undergoing aggressive treatment or maintaining quality of life for as long as possible.”

Balancing Hype and Hope

Complicating patients’ grasp and acceptance of the gravity of their illness may be news stories touting new cancer therapies that are extending the lives of some patients with advanced cancer and perhaps giving false hope to patients. “Cancer treatment has gotten much more nuanced,” said Dr. Chou. “There are new cancer treatment modalities, and there are people with stage IV cancer living longer than previously. And there are new clinical studies being launched all the time, and all of that adds a level of uncertainty when discussing prognosis with patients. That makes paying attention to how we communicate with patients even more important.”

More research is needed to determine the exact components that comprise effective doctor/patient communication in discussions about prognosis and advance care planning. However, just listening to patients and eliciting their end-of-life care goals can build trust, improve patients’ understanding of their life expectancy, and provide patients with the information they need to make informed decisions about their care, suggested Dr. Chou. And, most important, these steps can help patients with advanced cancer achieve a better quality of life. ■

Disclosure: Drs. Prigerson, Bruera, and Chou reported no potential conflicts of interest.

References

1. Epstein AS, Prigerson HG, O’Reilly EM, Maciejewski PK: Discussions of life expectancy and changes in illness understanding in patients with advanced cancer. J Clin Oncol 34:2398-2403, 2016.

2. Tanco K, Rhondali W, Perez-Cruz P, et al: Patient perception of physician compassion after a more optimistic vs a less optimistic message: A randomized clinical trial. JAMA Oncol 1:176-183, 2015.

3. Cohen SM, Maciejewski R, Nelson JE, et al: The messenger matters: Relative influence of oncologists versus other care team members on advanced cancer patients’ illness understanding. 2016 ASCO Annual Meeting. Abstract 6545. Presented June 3, 2016.

4. Trevino KM, Zhang B, Shen MJ, Prigerson HG: Accuracy of advanced cancer patients’ life expectancy estimates: The role of race and source of life expectancy information. Cancer 122:1905-1912, 2016.



Advertisement

Advertisement



Advertisement