Fighting for Others: How Guilt and Obligation Drives the Desire for More Intensive Treatments in End-of-Life Cancer Care

Guilt and shame – not hope for recovery – are among the most common reasons terminally ill cancer patients continue with minimally beneficial treatments at the end of life, according to Rutgers researchers.

“In the United States, advanced illness care is enveloped in a set of moralized social attitudes around ‘fighting’ and ‘not giving up,’ where death is seen as the enemy, to be fought off at all costs,” said Login S. George, a health services researcher at the Rutgers Institute for Health, Health Care Policy and Aging Research, research member of the Cancer Prevention and Control Program at Rutgers Cancer Institute and lead author of the study published in the journal Health Psychology.

“This creates a dilemma for patients, who can feel like they are falling short of some moral code and disappointing others if they consider discontinuation of treatments,” George said. “Ours is among the first studies to quantify these sentiments.”

To assess end-of-life decision-making in terminally ill cancer patients, George and colleagues recruited 116 people receiving treatment at the Rutgers Cancer Institute, the state’s only NCI-designated Comprehensive Cancer Center, and other clinical sites between April 2022 and March 2024. Eligible participants had a median life expectancy of less than 12 months and were in the advanced stages of one of several cancers, including pancreatic, lung, colorectal or breast.

Participants answered structured interview questions, including those designed to assess whether guilt and a sense of duty pushed patients to continue nonbeneficial cancer treatments despite a poor prognosis.

Responses were analyzed to determine the association of such moral emotional processes with sociodemographic, distress and treatment decision-making variables.

In some questions, up to 88% of those interviewed said they continued potentially pointless treatments out of a moral obligation or for the benefit of loved ones. In response to the statement, “Stopping anticancer treatments would be a form of giving up on my family,” 19% of patients said, “a little,” 19% responded “somewhat,” 15.5% responded “quite a bit,” and 11.2% responded “a great deal.”

Similarly, up to 86% of patients reported they tried to appear more optimistic and physically well than they were feeling when loved ones were present. The instinct to downplay their discomfort even applied to how patients acted around their oncologists, with more than 41% saying they tried to appear more optimistic and healthier with doctors in the room, which in turn was associated with higher patient distress.

Previous studies have examined cancer patients’ feelings of guilt for burdening others with their care, but George said this study is novel because it focuses on an entirely different source of guilt – one stemming from “not abiding by the social code of battling cancer optimistically.”

“In an ideal world, a decision about stopping or continuing treatment would be guided by deliberation and intention and reflection on the part of patients, including open dialogue with others,” said George, who is also an assistant professor in the Rutgers School of Nursing. “But it appears that process can be restrained by some of these feelings of shame and obligation to others.”

George said the results have significant implications for end-of-life planning for those with advanced serious illness and should push families, loved ones and clinical providers to think deeply about what motivates patient preferences. That means helping patients recognize they have the choice, or permission, to discontinue treatments that are not seen to be worthwhile.

“Typically, doctors present people with information about treatment options and ask them what they want to do,” he said. “These results suggest we need to go a step further and discuss moral sentiments. Helping people articulate their feelings related to needing to continue treatments out of social expectations, or for the sake of others, could produce outcomes that are more in line with a patient’s actual wishes.”