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Candor urged in care of dying cancer patients
From the Richmond Times Dispatch
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 such as comfort care or even that their chemo has become futile.
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 society chief executive 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 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 long 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.
But it's part of a slowly growing movement to deal with a subject so taboo that Congress' attempt to give such planning a nudge in 2009 degenerated into charges of "death panels."
"Patients want more information than they often get. … The great majority of people and families want to know what they have, what can be done about it and what's going to happen to them," said Thomas J. Smith, professor of Medicine and Palliative Care Research at Virginia Commonwealth University Massey Cancer Center.
"That includes what's going to happen even towards the end of life. Will I die from this? How soon? Can you make some predictions? What are my options? Doctors routinely don't like to give that information, for at least several reasons.
"One, it's hard to tell people that medical science doesn't have a cure for their disease. The second is doctors are afraid of taking away hope, but all the available studies, including one done here at VCU Massey Cancer Center, say that the more honest you are, the more hope is maintained. The third reason is that doctors worry about making people depressed.
"With the death-panels issue, there has been a concern that somehow planning for a good death might make it happen or hasten it," Smith said.
"In medical facts, the exact opposite is true. People who use hospice actually live longer than those who don't. If you use palliative care alongside your usual oncology care you live at least as long if not up to three months longer."
Smith co-authored one of the background papers on which the new guidelines are based and helped design the patient booklet.
"People are afraid of uncontrolled symptoms," said Esther Desimini, vice president of oncology services at HCA Inc. Virginia.