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End-of-life discussions held at ‘astounding’ infrequency
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Ninety-five percent of patients with advanced cancer have an insufficient understanding of their prognosis and are ill-equipped to make informed end-of-life care decisions, according to results of a prospective, multi-institutional cohort study published in Journal of Clinical Oncology.
The study highlights the need for improvements in the way oncologists communicate prognoses with their patients and the development of educational aids to assist patients in their final stages of life.
“It was astounding that only 5% of the patients who were within months of death had a fully accurate understanding of the terminal, incurable nature of their disease,” study author Holly G. Prigerson, PhD, Irving Sherwood Wright professor of geriatrics, professor of sociology in medicine, and director of the Center for Research on End-of-Life Care at Weill Cornell Medicine, told HemOnc Today.
Prigerson and colleagues note that, although patients with advanced cancer want information about end-of-life care, oncologists often struggle with how to best convey sensitive information, especially when patients only have months to live.
“We have shown that patients and family caregivers need basic information about their illness and the intent and likely outcomes of treatment to make informed decisions,” Prigerson said. “We wanted to know what patients understood about the terminal nature of their illness so that they could make informed decisions about the end-of-life care.”
Researchers evaluated data from the Coping with Cancer II study conducted at nine U.S. cancer centers from January 2011 through February 2015. The analysis included 178 patients aged older than 21 years with advanced cancer — including stage IV gastrointestinal, lung or gynecologic cancers, or poor-prognosis stage III pancreas or lung cancers — and a life expectancy of 6 or fewer months.
Researchers asked patients four questions in pre-scan interviews and two additional questions in post-scan interviews. During interviews before restaging scans, researchers asked patients to identify terminal illness acknowledgement, recognition of their incurable disease status, knowledge of the advanced stage of their disease, and expectation to live months as opposed to years.
In post-scan assessments (median time between pre- and post-scan, 6 weeks), researchers asked patients if they had discussed prognosis and life expectancy in their last oncology visit, and if they had ever discussed prognosis and life expectancy with their oncology provider.
Before the restaging scan visit, nine patients (5%) correctly answered each of the four illness understanding questions. Sixty-eight patients (38%) reported they had never had discussions of prognosis and life expectancy with their oncologist.
Prigerson said she was discouraged to find that only 10% of patients reported recent discussions of prognosis and life expectancy, 38% reported only past discussions, and 13% reported both recent and past discussions.
“Without this basic understanding that death was approaching and treatments would not be curative, patients could not participate in a meaningful way in deciding what care they want or do not want, and how to spend their remaining days,” Prigerson said.
Patients who reported recent only, or both recent and past discussion, demonstrated positive changes in understanding their illness between pre- and post-scan interviews.
Researchers noted one limitation of the study could be patients’ inability to accurately recall whether their doctors have discussed their cancer stages or prognoses.
This lack of communication is a “conspiracy of silence,” Prigerson said. The oncologic community needs to address whether oncologists or other team members are best suited to have these end-of-life conversations, how frequently they need to take place, and the proper phrasing that should be used, she added.
“Oncologists know their patients are dying, and the patients should know it, too,” Prigerson said. “It is important that oncologists impart realistic expectations.” – by Chuck Gormley
For more Information:
Holly G. Prigerson , PhD, can be reached at 525 E. 68th St., 1404 Baker Pavilion, NewYork-Presbyterian Hospital, New York, NY 10065; email: hgp2001@med.cornell.edu.
Disclosure: Prigerson reports no relevant financial disclosures. Please see the abstract for a full list of researchers’ relevant financial disclosures.
Perspective
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Talking to patients and their caregivers about prognosis — especially near end of life — is one of the most challenging conversations oncologists will have. Regardless of our own perceptions of how well or often we have these conversations, it is clear that patients are woefully unaware of their standing on their own disease trajectory. Yet, having this understanding is critical for patients and their caregivers. Goals of care at end of life shift from pursuing disease-directed therapy with lower chances for success to prioritizing closure with friends and families, crafting legacies, transitioning roles and addressing finances. Would we not want this information ourselves, should the roles be reversed?
We are the “experts” for our patients. It needs to be a priority for each of us to help guide them along their journey. So, how do we make these conversations happen earlier and better? Defining triggers — such as restaging scans, like Epstein and colleagues used — is a very good choice. Other triggers could include a therapy plan change, disease progression or when the option of palliative care is introduced, and most certainly when the diagnosis of metastatic disease is present.
It also may be helpful for us to acknowledge these conversations as tough. It takes skill to bring up discussing prognosis, to understand what patients and caregivers want to know, to provide them with the information they need, and to guide them through a discussion of how this new shared understanding may influence treatment decisions ahead. There are readily available communication skills training programs and talking maps that — if endorsed and practiced — may help us approach these topics more readily.
Shared decision-making and patient-centered care are concepts we willingly endorse. With only 5% of patients having an accurate understanding of their illness, and almost 40% of patients never having an understanding of their prognosis, we have room for improvement. Defining triggers and prioritizing communication skills may help us get there.
Epstein AS, et al. J Clin Oncol. 2016;doi:10.1200/JCO.2015.63.6696.
Jackson VA, et al. J Palliat Med. 2016;doi:10.1089/jpm.2010.049.
You JJ, et al. CAMJ. 2016;doi:10.1503/cmaj.140673.
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