The American Society of Clinical Oncology met in Chicago recently to discuss new therapies and review scientific data. Two research papers grabbed our attention.

One debunks the theory that talking about end-of-life options depresses people and upsets them. Researchers followed advanced cancer patients, asking, among other things, if they'd talked with their doctor about the end of life. Only 31% had. How did they fare, compared with patients who never discussed the subject? (Read Abstract)

It turns out, talking about death won't kill you. The researchers learned "the big talk" doesn't harm people, doesn't make them nervous or worried. But it does change how they die.

People who had "the big talk" were more likely to value comfort over life extension and to receive hospice care. They were one-third as likely to enter an intensive care unit and one-fourth as likely to be put on mechanical ventilation. Most people hope when death comes it will creep up peacefully while they're at home in their own bed. Now we know talking about it can help make that happen.

The other paper, appearing in the Journal of the American Medical Association, lists study after study showing that oncologists continue aggressive chemotherapy long after it does any good. Cancer doctors really, really dread candid conversations and avoid them if they can. (Read Abstract)

Patients said they learn more from other patients in the waiting room than from their doctors. Even when patients specifically ask about survival and prognosis, doctors admitted they usually (63 percent of the time) give false data, or none at all. Studies found doctors routinely exaggerate life expectancy estimates by 350 percent.

Is it kind to mislead patients—or cruel? My view is "it depends." Patients who don't want the truth don't ask for it. In that case no one should force it on them. But when they ask, it means they want and deserve accurate, complete information. And then, no one has the right to keep it from them.

This week a bill sponsored by Compassion & Choices, the "Right to Know End-of-Life Options Act," comes before the Health Committee of the California Senate. If it becomes law it will create the right for terminally ill patients, who ask about their options, to learn the whole truth.

Guess who is working hard to kill this bill—California oncologists! That's right, lobbyists for cancer doctors are fighting in the state Capitol to withhold truthful information from their patients. It's hard to believe they would do this, when their own evidence shows "the big talk" eases the transition from curative therapy to comfort care and helps patients plan for a peaceful death. But there you have it. The oncologists don't want this bill to pass and they've joined right to lifers in coaxing lawmakers to vote against it. Why?

Theories abound. Maybe oncologists don't want to admit the cancer is winning and will soon claim their patient. Maybe treating so many dying patients makes honest dialogue too emotionally draining. Last June the New York Times noted that oncologists pocketed billions of dollars on the chemotherapy they prescribed until Medicare was forced to crack down on the way it reimbursed for these drugs.

The writer asserted that "With the new limits on cancer drug profits, some cancer doctors are searching for new income—like performing chemotherapy more often or installing multimillion-dollar imaging machines where they profit when their patients receive diagnostic scans."

The Times quoted Dr. Robert Geller, a former oncologist now working at a biotechnology company: "It's clear that physicians stopped making decisions based on what made scientific or clinical sense in lieu of what made better business sense."

Barbara Roberts is a former Oregon governor, and much beloved throughout the state. She's written a book about grief and often talks about Oregon's enlightened attitude toward end-of-life choice. Barbara tells audiences, "I believe anything you can talk about, you can make better."

Of course this is true. But the converse is also true. Until we can talk about choices to be made, we have no chance to improve end-of-life care and spare cancer patients' needless pain, agony and invasive technologies. Fortunately, good research is coming out, and it's pointing the way toward wise end-of-life policies. The studies say we should trust and empower patients to chart their own end-of-life course. I agree.

Be careful out there, and love one another.

– Barbara Coombs Lee is President of Compassion & Choices, a nonprofit organization dedicated to improving care and expanding choice at the end of life.

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posted at 03:13:27 PM