Research suggests that physicians who manage patients with advanced cancer often struggle with whether and how best to convey sensitive information about prognoses to these individuals for many reasons. Some studies indicate that physicians do not share information with patients about a terminal cancer prognosis despite the fact that end-of-life care discussions are often wanted by patients. Improving doctor-patient communication at the end of life may enhance the delivery of patient-centered care.
“There is a need for physicians to share prognostic information with patients that is relevant to their understanding of the intent of treatment,” explains Holly G. Prigerson, PhD. However, many doctors are reluctant to do so because they fear they will make patients needlessly hopeless or upset. Clinicians may also be concerned that patients will view them less favorably if they share prognostic information, but data examining this linkage are mixed.
Physicians often believe that patients who have an accurate prognostic understanding tend to experience higher levels of anxiety and a worse quality of life. To the contrary, research has shown that patients who are engaged in end-of-life discussions do not appear to be more depressed or worrisome. “Research has shown patients who discuss prognosis with their doctors are not more anxious or depressed or like their doctors less than those who do not,” says Dr. Prigerson.
Evaluating the Effects
For a study published in the Journal of Clinical Oncology, Dr. Prigerson and colleagues examined the effects of recent and past clinical discussions about a prognosis on changes in illness understanding by patients with advanced cancer. The investigators looked at recent and past oncology doctor-patient discussions about prognosis and life expectancy to assess changes in illness understanding by patients. Participants had late, stage IV advanced cancers that were refractory to prior chemotherapy and were expected to die within 6 months.
Patients in the study were interviewed before and after a visit in which cancer restaging scan results were discussed. During interviews, patients were asked:
1. If they acknowledged their illness as being terminal.
2. If they recognized whether or not their disease was incurable.
3. If they knew the disease was advanced.
4. What their expectations were with regard to living months as opposed to years.
“Our results showed that only 5% of patients demonstrated completely accurate illness understanding, meaning they could correctly answer all four of the illness understanding questions,” says Dr. Prigerson. Few patients had only recently discussed prognosis and life expectancy with their physicians (Table), and many reported having such a discussion only in the past. Importantly, about 38% of study participants reported never having a discussion of prognosis or life expectancy with their physicians. “Our results show how poorly patients with advanced cancer understand their prognoses,” adds Dr. Prigerson.
The analysis also adjusted for potential confounders among the study participants, such as education and race or ethnicity. After adjusting for these factors, significant positive changes in illness understanding were observed for patients in groups that reported only recently having discussions of prognosis and life expectancy with their doctors and for the group that had both recent and past conversations. Patients who reported at least a recent discussion about prognosis with their physician had significant improvements in illness understanding.
“Ultimately, patients have a right to be informed of and understand their prognosis,” Dr. Prigerson says. “Our findings highlight the need for timely prognostic disclosures with terminally ill patients. They also suggest that doctors need to discuss prognosis on an ongoing basis and frequently with terminally ill patients. By taking a proactive approach, patients are more likely to have better illness understanding. In turn, they can make more informed decisions about their end-of-life care.”
Prognostic understanding should be considered an evolving awareness of changing health that can empower patients, their loved ones and caregivers, and their healthcare team to make more informed treatment decisions. Updating patients frequently about a prognosis may help them and their families come to terms with the terminal nature of a disease, according to Dr. Prigerson.
There are many strategies to consider when delivering prognostic messages, such as informing patients to hope for the best—in terms of years of survival—while being prepared for the worst. “Regardless of the approach taken, discussing prognosis is an important matter for patients,” Dr. Prigerson says. She adds that research is needed to identify the most effective ways to communicate prognostic information to ensure that patients accurately understand their illness. These insights may become an important prerequisite for informed decision making.
Readings & Resources (click to view)
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 Onc. 2016 May 23 [Epub ahead of print]. Available at: http://jco.ascopubs.org/content/early/2016/05/19/JCO.2015.63.6696.full.
Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012;30:2715-2717.
Daugherty CK, Hlubocky FJ. What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians’ self-reports of prognosis disclosure. J Clin Oncol. 2008;26:5988-5993.