January/February 2022

Clinical Matters: Oncologists Missing Opportunities for End-of-Life Talks With Patients
By Keith Loria
Today’s Geriatric Medicine
Vol. 15 No. 1 P. 8

A recent study examines how physicians can initiate clear communication about patients’ wishes.

A new study reveals that a majority of oncologists are missing opportunities to discuss end-of-life (EOL) scenarios, too often relying on optimistic talk of the future to address patient concerns, and responding inadequately to patient concerns about disease progression or dying.

Led by researchers from Dartmouth College, the research team sought to learn why oncologists missed these opportunities for proper EOL discussions with outpatients being treated for advanced cancer. This included examining advance care planning, palliative care, discontinuation of disease-directed treatment, hospice care, and after-death wishes.

It also looked at those who successfully navigated the discussions and what they were doing right.

The study, “Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients,” was published in JAMA Network Open and funded by the Susan J. and Richard M. Levy 1960 Academic Cluster in Health Care Delivery at Dartmouth College.

According to the first author of the study, Kristin E. Knutzen, MPH, a doctoral student at the Rollins School of Public Health at Emory University, EOL treatment that doesn’t match patient goals can negatively affect patients, their loved ones, and health care systems. “EOL preferences are often not discussed until one month prior to death, even though the majority of patients desire this information earlier,” she says. “Because of this, we were interested in describing the frequency and nature of instances in which EOL preferences were discussed between oncologists and patients with stage IV malignancy as well as instances in which these preferences were not discussed, even when such a conversation would have been appropriate or necessary.”

The researchers found that out of 423 encounters between patients and oncologists, just 21 (5%) included EOL discussions. Additionally, from a random sample of 93 encounters between patients and oncologists, 35 of those (38%) included a missed opportunity for an EOL discussion.

“This tells us that there are many more opportunities for EOL discussions with patients with stage IV malignancy than there are actual EOL discussions,” Knutzen says. “Additionally, only 4 of 23 oncologists (17.4%) had both an EOL discussion as well as a missed opportunity for one. This tells us that individual oncologists were fairly consistent in their decision to discuss EOL preferences or forego the opportunity.”

A chief finding of the research was that when patients or their caregivers expressed concern over disease progression or brought up the possibility of dying, too often they were met with avoidant or absent responses from their oncologists. And even when oncologists did respond and acknowledge their questions, too often they deflected concerns rather than use them as openings to explore what the patients truly wanted.

In the analysis, the study authors found three ways in which oncologists missed opportunities to discuss EOL. They responded inadequately (ie, partially, avoidantly, or absently) to patient concerns related to disease progression or dying, used optimistic future talk to address patient concerns, and expressed concern over treatment discontinuation.

The findings are not inconsistent with past research on the topic, with Knutzen sharing that prior studies demonstrate the infrequency of EOL discussions in patients with advanced cancer as being roughly 10%.

Start Talks Early
It’s widely accepted that early discussion of EOL care preferences improve clinical outcomes and goal-concordant care. In fact, talking about EOL matters has been proven to be associated with reduced costs and better quality of care in the final weeks of life.

Most patients appreciate full disclosure and do not want a prognosis that is overly optimistic, and while it’s not news they want, they would rather hear the truth, hear it sooner rather than later, and get specific time frames.

“We found that oncologists who engaged in EOL discussions with patients did three things to initiate and facilitate these conversations,” Knutzen says. “Oncologists reevaluated treatment options in response to patients’ expressions of concern, honored patients as experts on their goals, and used anticipatory guidance to frame treatment reevaluation. These tactics allowed oncologists to successfully navigate opportunities to explore patient goals, preferences, and values related to EOL.”

While the study looked at 423 encounters, the researchers allow for the fact that discussions could have taken place before the conversations were recorded, so the numbers could be inaccurate. Still, it’s widely believed that not enough discussion is going on soon enough and that change is necessary.

Early EOL discussions are important because they create the opportunity for patients to communicate their goals, values, and preferences for EOL to their oncologists. With this knowledge, oncologists and patients can make shared decisions related to advance care planning, palliative care, discontinuation of disease-directed treatment, hospice, and after-death wishes.

“EOL treatment that is concordant with patient preferences can positively impact patient quality of life, quality of dying, and caregiver bereavement outcomes,” Knutzen says.

She further explains that some oncologists feel uncomfortable prognosticating life expectancy, especially when new treatment options are coming to light all the time, so they shy away from diagnosing a life expectancy of days, weeks, or months, instead forecasting much greater times in all cases.

That’s led the authors to theorize that the gap between EOL discussions and missed opportunities actually centers around affective work regarding empathy and tolerance of emotional discomfort, rather than cognitive work regarding future planning or conveying treatment information.

Another thing that the researchers found were oncologists who utilized a fair share of optimistic future talk; rather than address a patient’s concern directly, they would share anecdotes about other patients who exceeded an EOL prognosis, providing false hope and preventing a patient from preparing for death. Again, this is a way for oncologists to avoid talking about something that needs to be discussed.

Sure, it’s easier for a doctor to talk about best-case scenarios, and a patient’s positive mindset can do a lot to help them battle the cancer, but it’s also necessary to be honest and allow someone the dignity to know when an EOL event is coming. When a terminal diagnosis is given, most patients understand what this means and are grateful for their oncologist being frank with them.

Effective Communication
According to Knutzen, some of the successful EOL conversations that were recorded included anticipatory guidance about trade-offs of quality of life and symptom burden. Because these topics aren’t as uncomfortable for oncologists to broach, she explains, they become useful strategies for starting these conversations. Furthermore, and maybe even more important, oncologists who engaged in these talks were meeting patients’ emotional concerns with understanding and empathy.

Of those oncologists classified by the researchers as engaging in successful EOL discussions, most relied on patients to guide treatment decisions, demonstrated by the way they asked their patients questions.

For example, one oncologist-initiated conversations with questions such as, “How would you feel? What would you like? What was the goal that you would like to attain?”

“By opening with the patients’ goals at the forefront, this oncologist allowed the patients to shape the subsequent conversation, using their goals as guiding pillars for any resulting recommendations,” Knutzen says.

It also allowed the patients the chance to explore their feelings toward treatment discontinuation in an approachable way that did not demand immediate commitment. The oncologist acted as a facilitator, creating an environment for reflection, while the patient led the decision making.

Another characteristic of oncologists who successfully communicate with the patients on these matters is the way they talk about the patient, rather than the cancer, as being the focus of attention. For instance, one oncologist told a brave patient, “The scan doesn’t tell the story. You tell the story.”

This doctor directly linked the treatment decision to the patient’s quality of life, thereby emphasizing treatment of the person instead of the disease.

Looking Ahead
The findings showed that early initiation of discussions regarding patient goals of treatment and preferences for EOL care could improve EOL outcomes for patients.

It’s important to keep in mind that the data used were collected between seven and 11 years ago, so it’s possible that matters have evolved somewhat; however, other data the authors looked at revealed the frequency of discussions remained low with patients who had advanced cancer.

Considering the decades of work that have aimed to improve oncologist communication concerning EOL topics, it is somewhat concerning that these opportunities for discussion are still largely overlooked, Knutzen notes. After all, discussions about advance care planning, palliative care, hospice care, treatment discontinuation, and after-death wishes could put an end to aggressive, burdensome, and expensive EOL treatment that’s been unchecked.

Therefore, the study authors hope future efforts in this area will address barriers to oncologists’ engagement in EOL discussions, including fear of upsetting patients.

“Barriers could include oncologists’ discomfort engaging in EOL discussions and inherent challenges to providing time-sensitive prognoses,” Knutzen says. “Addressing these barriers could increase the number of EOL discussions between patients and oncologists, leading to an increase in EOL treatment that better aligns with patients’ preferences.”

— Keith Loria is a D.C.-based award-winning journalist who has been writing for major publications for nearly 20 years on topics as diverse as real estate, travel, Broadway, and health care.