Addressing the Need for Clear and Honest Communication with Seriously Ill Patients

Feb 10, 2015 at 03:58 pm by Staff

Despite the fact that chemotherapy delivered to cancer patients with a poor prognosis is intended only to provide palliation, not a cure, a national survey has found that a majority of patients with metastatic lung or colorectal cancer have false expectations regarding the curative potential of the treatment.

The survey results raise the question as to whether the needed patient-physician conversations about palliative and end-of-life care are taking place, according to two articles published recently in The New England Journal of Medicine (NEJM).

In one article, entitled “Patients’ Expectations about the Effects of Chemotherapy for Advanced Cancer,” the authors’ findings, in summarizing the survey’s results, suggest that patients who do not know whether a treatment offers any possibility of cure may be compromised in their ability to make informed treatment decisions that are consonant with their preferences. And what is perhaps most worrisome is that this misunderstanding could represent an obstacle to optimal end-of-life planning and care.

Researchers analyzed interview responses of 1,193 patients who were diagnosed with metastatic lung or colorectal cancer between 2003 and 2005, who had discussed chemotherapy with at least one physician and who had opted to receive palliative chemotherapy. All patients were participants in the national Cancer Care Outcomes Research and Surveillance (CanCORS) study.

Key findings

Following are the key findings of the survey:

Overall, 69 percent of patients with lung cancer and 81 percent of those with colorectal cancer gave responses suggesting they did not understand that chemotherapy was very unlikely to cure their disease.

The risk of reporting inaccurate beliefs about chemotherapy was higher among patients with colorectal cancer compared with those with lung cancer (odds ratio [OR], 1.75; 955 confidence interval [CI], 1.29 to 2.37).

The risk of misunderstanding the intent of chemotherapy was also found to be higher among African-American patients (OR, 2.93; 95% CI, 1.80 to 4.78) and Hispanic patients (OR, 2.82; 955 CI, 1.51 to 5.27) compared with non-Hispanic white patients.

Factors such as educational level, functional status and the patient’s role in decision making were not associated with the likelihood of inaccurate expectations about the curative potential of chemotherapy.

‘A serious problem of miscommunication’

In an editorial that accompanied the NEJM article about the national survey, Tomas J. Smith, MD, and Dan L. Longo, MD, of the Sidney Kimmel Cancer Center at Johns Hopkins University School of Medicine, Baltimore, stated that if patients actually have unrealistic expectations of a cure from a therapy that is administered with palliative intent, the medical establishment has a serious problem with miscommunication, and this problem needs to be addressed.

Doctors Smith and Longo go on to state that studies have shown that two-thirds of doctors tell patients at the initial visit that they have an incurable disease, but only about a third actually state the prognosis—at any time. The doctors wonder what conversations took place between the CanCORS study patients and their physicians. For instance, if patients were told their disease was incurable, did they not understand or did they choose not to believe what they were told? These are important questions to ask. Doctors Smith and Longo add that it is not easy to tell patients that they are going to die, so most doctors choose not to do so. This might explain their joint observation that, two months before death, half of all patients with lung cancer had not heard any of their doctors use the word ‘hospice.”

Most patients want to know whether or not they can be cured, and physicians can provide them with the information they need in order to plan for their remaining life, note Smith and Longo. They suggest the “ask, tell, ask” conversation.

Ask patients what they want to know about their prognosis.

Tell them what they want to know.

Ask, “What do you now understand about your situation?”

Physicians require assistance in holding conversations that acknowledge death and that help patients with life-limiting illness to understand their curability, observe Smith and Longo. And, they add, this is not one hard conversation for which doctors can muster the courage; rather, it is a series of conversations that must take place over time from the first existential threat to life”

Recommendations for physicians include:

State the prognosis at the first visit.

Appoint someone in the office to ensure that a discussion of advance directive options occurs.

Help to schedule an informational visit from a local hospice within the first three visits.

Offer to discuss prognosis and patient/family coping at each illness transition.

If patients are offered truthful information—repeatedly—on what is going to happen to them, they can make more informed decisions and choices regarding their plan of care, assert Smith and Longo. Doctors have the tools to help patients make these difficult decisions; they just need the gumption and incentive to use them.

Joint Commission launches educational campaign

Helping seriously ill patients and their families to become proactive in understanding and seeking the services of palliative medicine and hospice is the focus of a new educational campaign from The Joint Commission. Entitled “Speak Up: What You Need to Know about Your Serious Illness and Palliative Care,” the program offers free downloadable brochures, videos and posters.

Topics addressed in the brochure include how and when to get palliative care, questions palliative care specialists might ask patients, questions for patients to ask their palliative care providers and where to get more information.

The campaign, which was launched in October 2012, was developed in collaboration with the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association and the National Hospice and Palliative Care Organization.

James Wright, D.O., is a regional medical director at VITAS Healthcare, the nation’s leading provider of end-of-life care. To learn more about VITAS, please visit

Sections: Events