WASHINGTON (AP) - Patients don't want to hear that they're dying and doctors don't want to tell them. But new guidance for the nation's cancer specialists says they should be upfront and do it far sooner.
The American Society of Clinical Oncology says too often, patients aren't told about options like comfort care or even that their chemo has become futile until the bitter end.
To help families broach the topic, too, the group developed an easy-to-read booklet about those choices, from standard care to symptom relief, and advice about what to ask to maximize remaining time.
"This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning," says ASCO chief executive Dr. Allen Lichter. "When everyone is well and has their wits about them, it's time to start the process."
The guidance and booklet - available at http://www.cancer.net - mark an unusually strong push for planning end-of-life care, in a profession that earns more from attacking tumors than from lengthy, emotional discussions about when it's time to stop.
"This is a clarion call for oncologists . to take the lead in curtailing the use of ineffective therapy and ensuring a focus on palliative care and relief of symptoms throughout the course of illness," the guidance stresses.
Fewer than 40 percent of advanced cancer patients have what it calls a "realistic conversation" with their doctors about what to expect and their choices of care.
The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life. They're spending more of their last months hospitalized. They're not told that a lot of expensive, side effect-prone therapies buy at best a few more months.
They think palliative care - specialized care for pain, nausea, shortness of breath - means giving up when it should be offered with standard anti-tumor care.
And they're not referred to hospice until their final days. Lichter tells of a lung cancer patient who spent his last days on a ventilator, unable to say goodbye and incurring $25,000 in hospital bills, because his family called 911 when he became short of breath. Hospice care could have eased that symptom at home.
The society plans by summer to issue detailed guidelines to help doctors conduct those tough conversations. Meanwhile, among its advice for patients:
-Ask your doctor about pros and cons of different treatment options, and discuss your priorities, including quality of life, with the doctor and family. You can change your mind later.
-Ask about palliative care for symptom relief along with your chemo. A major study last summer found that combination helped advanced lung cancer patients live a few months longer, because people who feel better can tolerate more anti-cancer treatment.
-A living will ensures health workers and family know your choices when you cannot communicate, including whether you would want such things as a feeding tube.
-Most clinical trials for experimental treatments won't admit people who've already undergone multiple treatments, so consider that option early.
EDITOR'S NOTE - Lauran Neergaard covers health and medical issues for The Associated Press in Washington.
Cancer group: http://www.cancer.net
State advance directives: http://www.caringinfo.org/PlanningAhead