Back in 2009, when the Affordable Care Act was being discussed, former Alaska Gov. Sarah Palin condemned one idea as a "death panel."
The idea was to allow doctors to bill for their time when discussing a patient’s end-of-life wishes. Palin's characterization was roundly debunked, but the idea was still pulled from the law.
Still, some patients wanted those conversations.
So in Oregon, doctors squeezed the discussions into regular medical appointments — a few minutes here, a few minutes there.
Doctors said it’s not the most effective way to have a delicate discussion. And because of the timing, family members often aren’t included. But now, the federal government is reviewing a proposal again to allow doctors to bill Medicare for end-of-life consultations.
Retired Portland social worker Jo Ann Farwell understands why those discussions are so important.
Last year, Farwell visited her son in New York, but when she went to the airport to fly home, she didn’t feel right.
"I had missed a flight. Actually, I think I missed two flights and so he called and asked the airport police to find me," she said. "He knew there was something wrong."
Her speech was slurred and her sentences would taper off into silence. Doctors figured out pretty quickly that Farwell had a brain tumor.
"So I had surgery and had a prognosis of four to six months to live," she said.
After surgery, Farwell went to rehab for speech and physical therapy, and it was during that time that she met with a doctor to fill out what’s known as a form for POLST, or Physician Orders for Life-Sustaining Treatment.
"Well I don’t want to prolong my suffering," Farwell said. "And I’ve come to terms with dying and I know that’s right down the road for me. And I wouldn’t want to be on tube feeding, I wouldn’t want to be resuscitated or to have mechanical ventilation, because the way I see it that would probably prolong my dying, rather than giving me quality of life,” she said.
Because Farwell was in rehab, it was pretty easy for staff there to cobble together enough time to address her end-of-life wishes during various medical appointments. But the current Medicare system does not permit doctors to bill for these kinds of conversations.
Dr. Susan Tolle with the Oregon Health & Science University Center for Ethics in Health Care regularly has such discussions with her patients. She said there’s a code she puts in her medical notes to account for that time, but it’s not a billable code.
She said she’s not troubled by the work-around.
"I’m being completely straightforward that this was part of the time that I spent in counseling, but I would not be able to make it the exclusive reason for the visit," she said.
In practical terms, that means it’s hard for the family members of her patients to turn up for 10-minute conversations at appointments often held weeks apart.
Tolle said she hands out literature and points patients to online videos instead. But she’s thrilled the federal government may soon allow doctors to bill for this time.
"What it does is it gives this really important conversation dignity and standing," she said.
Jo Tolck with the Human Life Alliance, a group based in Minnesota that opposes abortion and assisted suicide, said she's in favor of allowing doctors to bill for end-of-life conversations, but not if they involve the POLST form.
She’s concerned that the POLST cuts out family members or anyone else who’s been given the power to make a patient’s medical decisions.
"So you’ve got the POLST, you’re trying to cover everything that could possibly happen to you. And we can’t do that," Tolck said.
She points out circumstances change, so it’s better to have a person making medical decisions, rather than following a form.
Rep. Earl Blumenauer, D-Ore., has introduced legislation for this issue every session since 2009.
He said the government doesn't seem to place any value on helping people prepare for death.
"The Medicare program will pay for literally thousands of medical procedures, many of them very expensive and complex, even if the person is at the latest stage of life and it may not do any good," Blumenauer said.
From a purely financial point of view, this change could save a lot of money.
But Blumenauer said that’s not what’s pushing him.
"I don’t care what people decide," he said. "If they want to die in an ICU (Intensive Care Unit) with tubes up their nose, that’s their choice. What we want is that people know what their choices are."
Back in Portland, Farwell has a big pink POLST form taped to her fridge and a sticker in her wallet, so doctors will know about her wishes. There’s an online registry too.
Farwell looked after her sister as she died from cancer.
"She never talked about death or dying. Never talked about what she wanted at the end," Farwell said. "So that was very very difficult for me to try to plan and give her care, or even arrange for her funeral, because I didn’t know what she wanted."
Farwell wants her sons to know her wishes.
The Centers for Medicare and Medicaid Services is now accepting public comment on this idea. The agency is expected to make a decision by November. And whatever it decides, many private insurers are likely to follow suit.
Kristian Foden-Vencil
/Jo Ann Farwell filled in a POLST form after being given four to six months to live. She wants comfort care in her final days, but no feeding tubes or mechanical ventilators.
OHSU
/Dr. Susan Tolle, with the Center for Ethics in Health Care at Oregon Health and Science University, said currently doctors have to squeeze end-of-life conversations into regular medical appointments with patients.
Copyright 2015 Oregon Public Broadcasting
