By JANE E. BRODY
NYTimes.com 620 Eighth Avenue New York, NY 10018
Copyright 2013 The New York Times Company
When my husband learned he had advanced lung cancer, he didn’t even want to speak to an oncologist about chemotherapy. He saw no point in treatment that could not cure him and might make him feel worse.
Not so, though, for a majority of patients diagnosed with cancers of the lung or colon that have spread well beyond their original site and are currently not curable by any drugs in the medical armamentarium. Most patients with these so-called stage 4 cancers who choose to undergo chemotherapy seem to believe, incorrectly, that the drugs could render them cancer-free.
That is the finding of a recent national study of nearly 1,200 patients with advanced cancers of the lung or colon. Overall, 69 percent of those with stage 4 lung cancer and 81 percent of those with stage 4 colon cancer failed to understand “that chemotherapy was not at all likely to cure their cancer,” Dr. Jane C. Weeks, an oncology researcher at the Dana-Farber Cancer Institute in Boston, and colleagues reported in The New England Journal of Medicine.
When patients do not understand the limitations of such treatment, their consent to undergo it is not truly informed, the authors concluded.
This is not to say that chemotherapy is pointless when cancer is far advanced. Various drugs, some with limited toxicity, can be used as palliatives, perhaps shrinking tumors temporarily to relieve symptoms, slowing the cancer’s growth and prolonging the lives of some patients.
But aggressive chemotherapy when death is but weeks or months in the offing can seriously compromise the quality of patients’ remaining time and may delay their preparations for the end of life, to the detriment of both patients and their families.
“If you think chemotherapy will cure you, you’re less open to end-of-life discussions,” Dr. Weeks said in an interview.
When patients pursue chemotherapy under the false belief that they still have a chance for a cure, it often delays their transition to the comfort care of hospice. When patients spend only a few days or a week in hospice, caretakers don’t have enough time to get to know them and their families and offer the physical, emotional and practical benefits hospice can provide.
Dr. Weeks said continued chemotherapy involves more trips to the hospital, blood draws and X-rays, whereas hospice attends to patients’ symptoms and concerns, and encourages them to leave meaningful legacies. When my husband entered hospice after two miserable weeks in the hospital undergoing palliative radiation, he experienced such relief that he said cheerfully, though in jest, “What if I decide I want to live?” and then enjoyed a treasured last visit with two of his grandchildren.
Communication is a two-way street; doctors and patients alike contribute to patients’ failure to appreciate medicine’s limited ability to treat advanced cancer.
In an editorial accompanying the journal report, Dr. Thomas J. Smith and Dr. Dan L. Longo pointed out that “people have an optimistic bias.” Despite a grim prognosis, this bias prompts patients to believe treatment can cure them.
“Even with repeated discussions, about one-third of patients are not able to say they have a disease from which they will die in a year or so,” Dr. Smith, an oncologist and director of palliative care at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, said in an interview.
“Our job is not to force them into acceptance but to encourage them to plan for the worst while hoping for the best,” Dr. Smith said. “Such patients have better outcomes — less depression and less distress, and they’re more likely to die comfortably at home.”
Cultural and racial factors, and most likely religious beliefs, influence acceptance of the futility of continued treatment, Dr. Weeks said. In her study, nonwhite and Hispanic patients were more likely than whites to believe that chemotherapy could cure them. But surprisingly, patients’ educational level, degree of disability and participation in decision-making were not associated with inaccurate beliefs about chemotherapy.
What can make a huge difference, Dr. Smith said, is how and how often doctors discuss options with patients and describe the potential of continued treatment. He and Dr. Longo suggested that practitioners master “the conversation known as ‘ask, tell, ask,’ which consists of asking patients what they want to know about their prognosis, telling them what they want to know, and then asking, ‘What do you now understand about your situation?’ ”
Among the questions Dr. Smith said doctors should be asking are, “How much do you want to know about your cancer? What do you know about your cancer? Who would you like to include in discussions about your care? Would you like me to write down the important points? What is important to you? What are you hoping for? Who are your other doctors so that I can communicate with them?”
Finally, he said, rather than asking the patient “do you have any questions?” the doctor should ask, “Now that we have discussed this, what is your understanding of your situation?” And rather than having this conversation only once, Dr. Smith said, “It should be repeated at every transition point.”
He and Dr. Longo also recommend that oncologists state the patient’s prognosis at the first visit, appoint someone in the office to discuss advance directives, schedule a hospice-information visit, and offer to discuss prognosis and coping at each transition.
Using this approach, practitioners in the US Oncology Network, a group of community-based oncology physicians, have doubled the time patients spend in hospice, decreased costs, alleviated patients’ symptoms, reduced stress on caregivers and often lengthened survival, Dr. Smith said. Various studies have shown that cancer patients in hospice live weeks to months longer than comparable patients not in hospice care.
When doctors fail to give direct, clear information, Dr. Smith suggests that patients ask, “What is my prognosis, really? What are my options? Can I meet with the palliative care and hospice teams?”
He noted, “This is the hardest conversation for doctors to have. A lot of doctors wait for someone to bring it up.” If the patient does not, then a family member can initiate the needed discussion.