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Edie Shigekawa wishes she had done things differently after her frail, 94-year-old mother Bessie fell and broke her arm.
"I would have much preferred her to be right here with hospice," she says. " That would have been a lot better."
Instead, the West Los Angeles resident did what many would do: she got her mother to the hospital. Doctors there operated to mend the bone. But when physical therapy was prescribed, Shigekawa said, "no more."
"I thought, 'you’ve got to be kidding, enough is enough!'" she says.
That’s because her mother was not only physically frail, she also suffered from advanced-stage dementia. So Shigekawa instead initiated a conversation about hospice. And, she says, a visibly-relieved doctor arranged for it.
In retrospect, Shigekawa says, had doctors initiated the end-of-life conversation earlier, her mother would have been spared uncomfortable medical treatment in her final days.
New end-of-life guidelines for doctors
"I think we should really step back and say, ‘what are we doing at the end of life?’ and really try to make it a much more benevolent and rational type of situation," says Dr. Glenn D. Braunstein, vice president for clinical innovations at Cedars-Sinai Medical Center.
Braunstein is among the leaders of what’s believed to be the first effort in a major American city to set end-of-life guidelines for doctors.
"The American culture is one of being very high tech of trying to do everything they can to preserve life, even at great expense to the patient with increasing pain and suffering at the end," he says.
Nearly a dozen L.A.-area medical institutions have endorsed the guidelines, including Cedars-Sinai, Kaiser Permanente Southern California and Los Angeles County-USC Medical Center.
But conversations about death aren’t easy, even for architects of the end-of-life guidelines.
"They're emotionally draining," says Braunstein, who has practiced for 46 years. "Not only am I thinking about the patient before me, but I’m thinking of my parents, my in-laws, other people I know who have died."
Add to that the reactions of the patient's family members as they face the death of a loved one, and "at times I let my own emotions show," says Braunstein.
The guidelines encourage doctors to, among other things, talk with patients about the potential benefit, harm and discomfort associated with such treatments as intubation, cardiopulmonary resuscitation (CPR) and feeding tubes, and whether they might deprive the patient of a peaceful death, or of the ability to communicate with loved ones.
Avoiding 'an uncomfortable subject'
But such conversations are hard for many physicians, says Dr. Daniel Stone, a Cedars-Sinai geriatric internist and co-author of the guidelines.
"The traditional way for doctors to avoid an uncomfortable subject is to talk about that which is treatable," Stone says, adding that 25 years in practice haven't made end-of-life conversations any easier for him.
"We don’t like to admit that all of our patients will pass away ultimately, as we will," he says, "and like the public, I think doctors are inclined to be in denial about that."
That denial, coupled with the lack of a conversation, is what often leads to a slew of unwanted medical treatments and hospital stays in the last weeks of life. And that runs counter to what polls say most people want.
A 2011 study on the end of life by the California Healthcare Foundation found 80 percent of Californians wanted to have an end-of-life conversation with their doctor, while only seven percent said they'd had that conversation.
Time is another challenge for doctors when considering the end-of-life talk, says Dr. Pamelyn Close, director of adult and pediatric palliative care at County-USC Medical Center and another co-author of the end-of-life guidelines.
The 'tip of the iceberg'
"The part of the patient we often get to see is just that very tip of the iceberg," Close says. "Everything else we want to honor and take into consideration is that huge mass that is unseeable, below the surface."
Getting below the tip of that iceberg -- to really understand the patient and his needs -- requires a longer conversation than can't be squeezed into a regular appointment, says Close.
The Affordable Care Act initially provided funding for doctors to have a separate appointment with their Medicare patients specifically to discuss the end of life. But the White House dropped that provision after opponents likened such conversations to government-sanctioned "death panels."
Braunstein says while doctors work to overcome their reluctance to discuss the end of life, patients need to take steps to protect themselves. He says among the most important is filling out a legal form known as an "advance health care directive."
"We plan for retirement, we plan for our children, we plan for education, we should plan for how we want to die, what we want at end of life," Braunstein says. "Do we want quality of life or quantity? And if we want quantity, how much are we willing to tolerate to get that quantity?"