When Terminal Cancer Patients Don't Get the Message

Oh, how disheartening.

I was troubled, but not too surprised, to read recently published conclusions of two large, population-based studies that found many patients with terminal cancer erroneously believe that palliative treatment (chemotherapy or radiation therapy) will likely cure their disease.

What left me truly dismayed was the first study’s powerful association (P = .002) between patients’ inaccurate perceptions of their prognoses and endorsements of their physicians’ communication skills.

That study, published Oct. 25 in the New England Journal of Medicine (2012;367:1616-25), documented beliefs of 1,193 patients who had received palliative chemotherapy for newly diagnosed stage IV lung or colorectal cancer. As oncologists well know, in this context, chemotherapy might extend life a bit (by weeks or perhaps months) and may alleviate pain or other symptoms of the disease. But it is not curative. And that’s the secret that wasn’t conveyed to patients – at least in a way that they could hear or accept.

Fully 81% of patients with metastatic colorectal cancer didn’t get the message. Nearly 70% of patients with metastatic lung cancer didn’t get the message. By disproportionately high percentages, minority patients didn’t get the message.

Most discouragingly, though, was this fact: The higher patients rated the quality of their communication with their physicians, the less likely they were to know the truth.

"This suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy," wrote the authors, led by first author Dr. Jane C. Weeks, a medical oncologist at the Dana-Farber Cancer Institute in Boston.

Denial is a familiar companion to anyone who works with patients with cancer, their families, and friends. It was the grief reaction cited first and foremost by Elisabeth Kübler Ross. As noted in an editorial accompanying one New England Journal of Medicine study (N. Engl. J Med. 2012;367:1651-2), "Self-deception [can be] a valuable coping tool."

But, at a certain point for cancer patients, denial has the opposite effect, prolonging exposure to side effects, draining a family’s (and society’s) resources, and wasting precious life moments while someone sits in a chemo chair, hoping for and believing in a cure that will not come.

In their editorial, Dr. Thomas J. Smith and Dr. Dan L. Longo of the Johns Hopkins Sidney Kimmel Cancer Center in Baltimore rightfully pointed out that the study’s design does not allow us to retrospectively tune into those exam rooms to set the record straight. Did the doctors perceived as great communicators simply not state the prognosis? Or did their patients "choose not to believe"?

"These are not trivial issues," they wrote. "Chemotherapy near the end of life is still common, does not improve survival, and is one preventable reason why 25% of all Medicare funds are spent in the last year of life.

"Patients need truthful information in order to make truthful choices."

A second study with strikingly similar results from Dana-Farber Cancer Institute in Boston was presented by radiation oncologist Dr. Aileen B. Chen at a plenary session during the annual meeting of the American Society for Radiation Oncology (ASTRO). In her study, Dr. Chen found that 64% of 384 patients with stage IIIB (wet) or IV lung cancer did not realize that palliative radiation therapy was not likely to cure their disease. In other words, same story, different treatment modality.

Together, these findings raise profoundly serious questions about the role that oncologists play in conveying information that they may not want to share and patients may not seem to want to hear. The implications are vast, both on an individual and societal level.

Dr. Smith and Dr. Longo, fortunately, offered specific guidance in their editorial, based on experience at their institution that has doubled the length of time patients benefit from hospice, kept survival rates steady, and reduced costs.

Here’s their formula for honestly conveying prognostic information, along with use of the "essential" communication skill "ask, tell, ask," that assesses patients’ understanding of a message by asking them to restate it in their own words.

• Clearly state the prognosis at the first visit (and whenever the prognosis changes).

• Assign someone in the office to consistently address advance directives.

• Facilitate a hospice information visit within the first three visits following conveyance of a terminal prognosis.

• Discuss the prognosis and coping ("What is important to you?") at each transition.

"If patients are offered truthful information – repeatedly – on what is going to happen to them. They can choose wisely," concluded the Johns Hopkins physicians. "We have the tools to help patients make these difficult decisions. We just need the gumption and incentives to use them."

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

Oh, how disheartening.

I was troubled, but not too surprised, to read recently published conclusions of two large, population-based studies that found many patients with terminal cancer erroneously believe that palliative treatment (chemotherapy or radiation therapy) will likely cure their disease.

What left me truly dismayed was the first study’s powerful association (P = .002) between patients’ inaccurate perceptions of their prognoses and endorsements of their physicians’ communication skills.

That study, published Oct. 25 in the New England Journal of Medicine (2012;367:1616-25), documented beliefs of 1,193 patients who had received palliative chemotherapy for newly diagnosed stage IV lung or colorectal cancer. As oncologists well know, in this context, chemotherapy might extend life a bit (by weeks or perhaps months) and may alleviate pain or other symptoms of the disease. But it is not curative. And that’s the secret that wasn’t conveyed to patients – at least in a way that they could hear or accept.

Fully 81% of patients with metastatic colorectal cancer didn’t get the message. Nearly 70% of patients with metastatic lung cancer didn’t get the message. By disproportionately high percentages, minority patients didn’t get the message.

Most discouragingly, though, was this fact: The higher patients rated the quality of their communication with their physicians, the less likely they were to know the truth.

"This suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy," wrote the authors, led by first author Dr. Jane C. Weeks, a medical oncologist at the Dana-Farber Cancer Institute in Boston.

Denial is a familiar companion to anyone who works with patients with cancer, their families, and friends. It was the grief reaction cited first and foremost by Elisabeth Kübler Ross. As noted in an editorial accompanying one New England Journal of Medicine study (N. Engl. J Med. 2012;367:1651-2), "Self-deception [can be] a valuable coping tool."

But, at a certain point for cancer patients, denial has the opposite effect, prolonging exposure to side effects, draining a family’s (and society’s) resources, and wasting precious life moments while someone sits in a chemo chair, hoping for and believing in a cure that will not come.

In their editorial, Dr. Thomas J. Smith and Dr. Dan L. Longo of the Johns Hopkins Sidney Kimmel Cancer Center in Baltimore rightfully pointed out that the study’s design does not allow us to retrospectively tune into those exam rooms to set the record straight. Did the doctors perceived as great communicators simply not state the prognosis? Or did their patients "choose not to believe"?

"These are not trivial issues," they wrote. "Chemotherapy near the end of life is still common, does not improve survival, and is one preventable reason why 25% of all Medicare funds are spent in the last year of life.

"Patients need truthful information in order to make truthful choices."

A second study with strikingly similar results from Dana-Farber Cancer Institute in Boston was presented by radiation oncologist Dr. Aileen B. Chen at a plenary session during the annual meeting of the American Society for Radiation Oncology (ASTRO). In her study, Dr. Chen found that 64% of 384 patients with stage IIIB (wet) or IV lung cancer did not realize that palliative radiation therapy was not likely to cure their disease. In other words, same story, different treatment modality.

Together, these findings raise profoundly serious questions about the role that oncologists play in conveying information that they may not want to share and patients may not seem to want to hear. The implications are vast, both on an individual and societal level.

Dr. Smith and Dr. Longo, fortunately, offered specific guidance in their editorial, based on experience at their institution that has doubled the length of time patients benefit from hospice, kept survival rates steady, and reduced costs.

Here’s their formula for honestly conveying prognostic information, along with use of the "essential" communication skill "ask, tell, ask," that assesses patients’ understanding of a message by asking them to restate it in their own words.

• Clearly state the prognosis at the first visit (and whenever the prognosis changes).

• Assign someone in the office to consistently address advance directives.

• Facilitate a hospice information visit within the first three visits following conveyance of a terminal prognosis.

• Discuss the prognosis and coping ("What is important to you?") at each transition.

"If patients are offered truthful information – repeatedly – on what is going to happen to them. They can choose wisely," concluded the Johns Hopkins physicians. "We have the tools to help patients make these difficult decisions. We just need the gumption and incentives to use them."

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.

Oh, how disheartening.

I was troubled, but not too surprised, to read recently published conclusions of two large, population-based studies that found many patients with terminal cancer erroneously believe that palliative treatment (chemotherapy or radiation therapy) will likely cure their disease.

What left me truly dismayed was the first study’s powerful association (P = .002) between patients’ inaccurate perceptions of their prognoses and endorsements of their physicians’ communication skills.

That study, published Oct. 25 in the New England Journal of Medicine (2012;367:1616-25), documented beliefs of 1,193 patients who had received palliative chemotherapy for newly diagnosed stage IV lung or colorectal cancer. As oncologists well know, in this context, chemotherapy might extend life a bit (by weeks or perhaps months) and may alleviate pain or other symptoms of the disease. But it is not curative. And that’s the secret that wasn’t conveyed to patients – at least in a way that they could hear or accept.

Fully 81% of patients with metastatic colorectal cancer didn’t get the message. Nearly 70% of patients with metastatic lung cancer didn’t get the message. By disproportionately high percentages, minority patients didn’t get the message.

Most discouragingly, though, was this fact: The higher patients rated the quality of their communication with their physicians, the less likely they were to know the truth.

"This suggests that patients perceive physicians as better communicators when they convey a more optimistic view of chemotherapy," wrote the authors, led by first author Dr. Jane C. Weeks, a medical oncologist at the Dana-Farber Cancer Institute in Boston.

Denial is a familiar companion to anyone who works with patients with cancer, their families, and friends. It was the grief reaction cited first and foremost by Elisabeth Kübler Ross. As noted in an editorial accompanying one New England Journal of Medicine study (N. Engl. J Med. 2012;367:1651-2), "Self-deception [can be] a valuable coping tool."

But, at a certain point for cancer patients, denial has the opposite effect, prolonging exposure to side effects, draining a family’s (and society’s) resources, and wasting precious life moments while someone sits in a chemo chair, hoping for and believing in a cure that will not come.

In their editorial, Dr. Thomas J. Smith and Dr. Dan L. Longo of the Johns Hopkins Sidney Kimmel Cancer Center in Baltimore rightfully pointed out that the study’s design does not allow us to retrospectively tune into those exam rooms to set the record straight. Did the doctors perceived as great communicators simply not state the prognosis? Or did their patients "choose not to believe"?

"These are not trivial issues," they wrote. "Chemotherapy near the end of life is still common, does not improve survival, and is one preventable reason why 25% of all Medicare funds are spent in the last year of life.

"Patients need truthful information in order to make truthful choices."

A second study with strikingly similar results from Dana-Farber Cancer Institute in Boston was presented by radiation oncologist Dr. Aileen B. Chen at a plenary session during the annual meeting of the American Society for Radiation Oncology (ASTRO). In her study, Dr. Chen found that 64% of 384 patients with stage IIIB (wet) or IV lung cancer did not realize that palliative radiation therapy was not likely to cure their disease. In other words, same story, different treatment modality.

Together, these findings raise profoundly serious questions about the role that oncologists play in conveying information that they may not want to share and patients may not seem to want to hear. The implications are vast, both on an individual and societal level.

Dr. Smith and Dr. Longo, fortunately, offered specific guidance in their editorial, based on experience at their institution that has doubled the length of time patients benefit from hospice, kept survival rates steady, and reduced costs.

Here’s their formula for honestly conveying prognostic information, along with use of the "essential" communication skill "ask, tell, ask," that assesses patients’ understanding of a message by asking them to restate it in their own words.

• Clearly state the prognosis at the first visit (and whenever the prognosis changes).

• Assign someone in the office to consistently address advance directives.

• Facilitate a hospice information visit within the first three visits following conveyance of a terminal prognosis.

• Discuss the prognosis and coping ("What is important to you?") at each transition.

"If patients are offered truthful information – repeatedly – on what is going to happen to them. They can choose wisely," concluded the Johns Hopkins physicians. "We have the tools to help patients make these difficult decisions. We just need the gumption and incentives to use them."

Dr. Freed is a psychologist in Santa Barbara, Calif., and a medical journalist.