February 7th, 2019
What do we expect from our clinicians and how does this affect our treatment? In a story in Health Affairs this week, Dr. Joseph Jacobson, chief quality officer at the Dana-Farber Cancer Institute and an associate professor of medicine at Harvard Medical School, explores the potential downsides of advanced cancer patients expecting to be “rescued” by oncologists. (For non-subscribers, parts of the story can be found on Twitter.)
Jacobson describes a difficult case in which a patient with advanced lung cancer came to Dana-Farber after her local oncologists told her they didn’t have a way to cure her cancer. Jacobson’s team started her on an aggressive course of radiation, which left the patient significantly weaker and led to a cascade of interventions, exacerbated by the patient’s underlying chronic conditions. A few months later, the patient died in the ICU, never having had a conversation about her goals of treatment.
As Jacobson reflects on this story, he realizes that the desire to “rescue” on the part of both patients and doctors is preventing us from recognizing the harms that aggressive cancer treatments can cause. Despite the “disabling toxicity” and financial costs of seeking aggressive and experimental treatments, we rarely discuss whether this treatment is preferable, or even ethical, because the ubiquitous message to cancer patients is “keep looking for options and don’t give up,” writes Jacobson.
We rarely discuss whether this aggressive treatment is preferable, or even ethical, because the message to cancer patients is “keep looking for options and don’t give up.”
Jacobson describes how the culture of oncology and professional incentives put more value on rescue than on incrementalism, and acknowledges the responsibility of oncologists to engage with patients in conversations about expectations. However, there are several factors that drive the expectation of rescue for advanced cancer that Jacobson does not mention in his story, but are worth discussing.
One reason patients and doctors expect aggressive treatments for incurable cancers is because of the prevalent but problematic metaphor of cancer as a war. When someone receives a cancer diagnosis, a common response from friends and family is that they can “fight cancer and beat it.” Obituaries often say someone died “after a long battle with cancer.” The message is clear: Cancer treatment is a war and we need to fight with everything we have to survive.
Unfortunately, not all diseases can be overcome. Thinking of cancer or other diseases as battles is discouraging for patients who do everything they can, but don’t find themselves getting better. “If the chemotherapy and radiation and surgery and drugs don’t work, and I die, will people be disappointed in me for not ‘fighting’ hard enough?” asked former cancer patient Xeni Jardin in a CNN op-ed.
Cancer is strange to think of as a battle, because the enemy is inside one’s body and comes from our own cells. As cancer patient Kate Granger wrote in The Guardian a few years ago, “In my world, having cancer is not a fight at all…I live with it and I let its physical and emotional effects wash over me. But I don’t fight it. After all, cancer has arisen from within my own body, from my own cells. To fight it would be ‘waging a war’ on myself.”
Despite pushback from cancer patients and advocates, the metaphor of cancer as a war is widespread and affects patients’ and oncologists’ expectations of cancer treatment.
Jacobson points out a few reasons why some advanced cancer patients have expectations of rescue, but misses a large one: marketing by cancer centers that imply that patients can beat the odds and be cured.
Last year, the consumer watchdog group Truth In Advertising (TINA.org) documented marketing practices of top cancer centers in the US and found that 90% of centers used advertisements with deceptive marketing practices, such as using atypical patient testimonials without including information on typical results for a patient with that diagnosis.
According to TINA, the Dana-Farber Cancer Institute (where Jacobson works) was the 4th-largest marketing spender among all US cancer centers. Dana-Farber’s advertisements included many atypical patient testimonials, implying that patients can “beat the odds.”
As Dr. Lisa Schwartz and Dr. Steven Woloshin wrote in a 2016 editorial about cancer centers’ marketing practices, “Cancer center advertisements generally make appeals based on emotion—not fact. The appeals raise the stakes, in essence saying you are in great danger but can be saved provided you make the right choice or doomed if you do not.”
Is it any wonder that advanced cancer patients come in with the expectation of rescue, when our culture tells cancer patients to fight as hard as possible, and hospital advertisements tell patients that they too can be saved? As Jacobson writes, we have to confront the ethical implications of treating patients with fatal cancers with multiple rounds of chemotherapy, radiation, and other aggressive treatments, without engaging patients in a conversation on their prognosis and treatment goals.