Studies have shown that although patients with advanced cancer want their oncologists to give them an honest assessment of their prognosis, most patients still perceive their illness as curable.1 And that lack of understanding of their prognosis can lead to reduced use of hospice care and increased use of hospitalization, according to the results of a study by Kah Poh Loh, MBBCh, BAO, MS, Assistant Professor, Division of Hematology/Oncology, Department of Medicine, James P. Wilmot Cancer Institute; and Director, Geriatric Hematology and Mobile Health Research, University of Rochester Medical Center, and colleagues.
The study evaluated the association of patients’ poor prognostic understanding and patient-oncologist prognostic discordance with health-care use among 541 older adults (median age, 76.6 years) with incurable solid tumors, most commonly lung cancer (25%) and gastrointestinal cancer (24%) or lymphomas. Dr. Loh and colleagues found that a large majority of the patients (59%) had a poor prognostic understanding of curability, and 41% had a poor prognostic understanding of life expectancy. In this study, poor prognostic understanding was defined as answering any percentage above 0% for curability and more than 5 years in life expectancy.
Jamie H. Von Roenn, MD, FASCO
Addressing the evolving needs of cancer survivors at various stages of their illness and care, Palliative Care in Oncology is guest edited by Jamie H. Von Roenn, MD, FASCO. Dr. Von Roenn is ASCO’s Vice President of Education, Science, and Professional Development.
When estimates of curability and life expectancy were compared, there was discordance regarding curability among 60% of patients and their oncologists and discordance for life expectancy among 72% of patients and their oncologists.2
In addition, the researchers found that prognostic discordance regarding life expectancy estimates was associated with increased hospitalization (adjusted odds ratio = 1.64; 95% confidence interval [CI] = 1.01–2.66), possibly the result of poor communication about worsening health status and patient preferences for more intensive treatment at the end of life. Poor prognostic understanding of life expectancy estimates was also associated with lower use of hospice care (adjusted odds ratio = 0.30; 95% CI = 0.16–0.59).2
The ASCO Post talked with Dr. Loh about how poor prognostic understanding among patients with terminal cancers and patient-oncologist prognostic discordance may result in patients being unable to make informed decisions about palliative treatment and end-of-life care and how oncologists can more effectively communicate prognosis with their patients. (See “Improving Physician-Patient Communication,” at right.)
Measuring Prognostic Understanding
Nearly 60% of the patients with advanced cancers enrolled in your study had a poor prognostic understanding regarding the curability of their cancer; 41% believed they had more than 5 years to live; and a large majority of patients, up to 72%, had a different estimate of curability and life expectancy than their oncologists. Why is there such a discrepancy between what patients with incurable cancers believe their survival chances are and what their oncologists believe?
How questions about survival and cure are asked in clinical trials can vary. We do not have a validated tool to measure prognostic understanding, so findings can be mixed depending on how questions on prognostic understanding are being asked. In our study, regarding the curability of cancer, we asked patients and oncologists, “What do you believe are the chances the cancer will go away and never come back with treatment?” Then, we asked patients and oncologists, “Considering your (the patient’s) overall life expectancy, what would you estimate your (the patient’s) overall life expectancy to be?” We found that even though oncologists knew the patients in this study had incurable cancers, a small number of oncologists thought there was a chance for a cure.
“I believe many oncologists do share prognosis with their patients, but whether the information is heard and registered by the patients is unclear.”— Kah Poh Loh, MBBCh, BAO, MS
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For example, among 19 patients who believed their curability was 0, 17 oncologists believed the patient’s curability was less than 50%, one believed it to be 50%, and one believed it to be more than 50%. I think there is this discordance because treatment has improved, even for stage IV cancers, so the possibility of cure and extended life expectancy becomes more blurred now.
However, there are other reasons for patient/oncologist discordance that may influence prognostic understanding, including functional and cognitive impairment in older patients. Also, oncologists may not effectively communicate prognosis or be reluctant to communicate prognosis over fear of being inaccurate.
Generally, I believe many oncologists do share prognosis with their patients, but whether the information is heard and registered by the patients is unclear. Even if patients understand their prognosis, many want to remain hopeful that they could be the exception to the odds, which leaves them less likely to be receptive to supportive services such as palliative care and hospice care.
Preparing Patients for the Worst-Case Scenario
How can oncologists provide their terminally ill patients with a realistic prognosis if patients do not want to know their chances of survival?
In my practice, I always ask patients what they want to know about their prognosis, and I make sure there is always a caregiver with the patient during these conversations if possible. If patients want to know their prognosis, I share the information. If patients do not want to know their prognosis, I ask why not; if they are still reluctant to hear their prognosis, I will initiate the conversation again later, after I have had a chance to build the relationship. I try to understand why patients do not want to talk about prognosis. I always frame the conversation with hope and say, “We always want to be hopeful, but we also want to prepare for the worst-case scenario.” This way, I am usually able to convince most patients to be willing to hear some of the information and then gradually build the discussion from there.
However, some patients absolutely do not want to know their prognosis, and I must respect that decision. With these patients, I ask how I can best prepare them for end-of-life care that is in accordance with their wishes if there is not much time left. And usually, patients will let me know when they are ready to hear the information. Often, it is not because patients do not want to know their prognosis, because they likely have some idea of the seriousness of their situation. They just do not want to talk about it because they think talking about death and dying will make it come true.
Do patients with terminal cancer generally have an unrealistic expectation of survival? What must happen to ensure that patients with advanced cancer have a better understanding of their prognosis, so their goals for end-of-life care can be met?
What we found in our study, but it was not highlighted as well, is there were about 5% of patients who were 100% sure they could be cured, even though their cancer was incurable. Most patients will believe they have a 50%/50% chance of survival, and I think that is still okay. The percentage should be zero, but some people want to have some hope and may think that even though their cancer is incurable now, new treatments might come along to extend their lives or even cure them.
We also found in our study that patients of non-White races seem to be more likely to have the perspective that they may be 100% cured of their cancer, and some of that belief may have to do with physician communication. We know that communication is different when the race of the patient and the physician is different, and that may be due to cultural differences.
Building Patient Trust
How can oncologists communicate more clearly a patient’s prognosis and be certain the patient understands his or her prognosis?
Oncologists must ask their patients what they want to know and then tailor their communication based on the patients’ preference. We try to involve family members in these conversations, as well as involve medical specialists, including from palliative care.
Understanding why patients do not want to know their prognosis is important, and we cannot just skip that part of the conversation and not talk about prognosis. There is usually a good reason why a patient does not want to know his or her prognosis. If we explore the underlying reason, we might be able to tailor the conversation based on that reason and build trust from there over time.
DISCLOSURE: Dr. Loh is a consultant for Pfizer and Seattle Genetics and has received honoraria from Pfizer.
1. Nipp RD, Greer JA, El-Jawahri A, et al: Coping and prognostic awareness in patients with advanced cancer. J Clin Oncol 35:2551-2557, 2017.
2. Loh KP, Seplaki CL, Sanapala C, et al: Association of prognostic understanding with health care use among older adults with advanced cancer: A secondary analysis of a cluster randomized clinical trial. JAMA Netw Open 5:e220018, 2022.
In 2017, ASCO published a new guideline in the Journal of Clinical Oncology outlining the best practices for communicating effectively with patients and their family members.1 The goal of the communication guideline is to provide oncologists with a framework of specific practices to enable them to...