More candor urged in care of dying cancer patients
LAURAN NEERGAARD | 2/8/2011, 6:26 p.m.
WASHINGTON - Patients do not want to hear that they are dying and doctors do not want to tell them. But new guidance for U.S. cancer specialists says they should be upfront and do it far sooner.
The American Society of Clinical Oncology says too often, patients are not told about options like comfort care or even that their chemotherapy 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.
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.”
Now consider a program in Pittsburgh named Closure. In so-called “community conversations,” the program teaches families how to talk with each other and their doctors about what they want - and want to avoid - in their final days. Created by the Jewish Healthcare Foundation, sessions have spread to hospitals, religious centers and neighborhoods around the city, and a website opened last month at http://www.closure.org.
The sessions are frank. Doctors tell of entering hospital rooms late at night asking for resuscitation preferences should a very ill patient worsen only to find relatives did not know their loved one was that sick.
“There is going to be, over the next few years, a groundswell of people telling physicians, ‘I don't want to go out in excruciating pain, short of breath, alone, surrounded by lights and sirens and people pounding on my chest,’” predicts Dr. Jonathan Weinkle, a primary care physician who advises the program.
“Everybody wants a good death but not a moment too soon, but they do not have the language to ask for it.”
Closure participant Pearl Moore, a retired Pittsburgh oncology nurse, urges people to start planning before they’re ever sick, when it’s easier to discuss.
Moore’s mother died of stomach cancer without health workers or family ever discussing the inevitable. Haunted, she returned to college to specialize in cancer nursing. She helped her patients discuss quality of life, “to be able to live until they died, is the way I put it,” Moore says.