Oregon's leadership in end-of-life care offers lessons for the rest of the country

Oregon's leadership in end-of-life care offers lessons for the rest of the country
By Dennis Peck,
Copyright by The Oregonian
September 02, 2009, 4:52AM
http://www.oregonlive.com/politics/index.ssf/2009/09/oregons_leadership_in_endoflif.html


Faith Cathcart/The OregonianArthur Hanlon, 92, who suffers from metastatic melanoma, receives care from hospice nurse Cynthia White, while he grabs a milkshake at his assisted living center.
Anyone who doubts the explosiveness of end-of-life care as a personal and political issue might consider the fate of Section 1233 of the health care reform bill now before Congress.

Section 1233, titled "Advance Care Planning Consultation," covers 10 of the legislation's 852 pages. It's known as the Blumenauer amendment, after its sponsor, Rep. Earl Blumenauer, D-Ore.

The amendment would allow Medicare to pay doctors for talking with patients about what care they might want at the end of life and how to make their wishes known. But it became a lightning rod for criticism of the Obama administration's working draft of health care reform legislation.

"This provision may start us down a treacherous path toward government-encouraged euthanasia if enacted into law," said House Republican leader John Boehner of Ohio.

Others, led by former Alaska Gov. Sarah Palin and conservative radio talk show host Rush Limbaugh, used the term "death panel" to describe Blumenauer's proposal.

In a widely publicized statement posted on Aug. 7 on her Facebook page, Palin said: "The America I know and love is not one in which my parents or my baby with Down syndrome will have to stand in front of Obama's 'death panel' so his bureaucrats can decide, based on a subjective judgment of their 'level of productivity in society,' whether they are worthy of health care. Such a system is downright evil."

Ka-BOOM!

The uproar over the Blumenauer amendment took many specialists in end-of-life care by surprise. Blumenauer himself said he was stunned by critics' "outright lying."

His proposal makes no mention of any sort of government panel making life-or-death decisions for patients or imposing limits on treatment without the patient's consent.

"I was livid," says Deborah Jaques, executive director of the Oregon Hospice Association. She was appalled how an effort to encourage doctors to talk with patients about their end-of-life choices could be portrayed as "death panels" or a slide toward euthanasia.

"The real issue is: What do you want to have happen when you die -- because none of us is getting out of this alive," she says.

"The idea that someone is going to make you do something or deny you treatment is all over the confused national debate," says Dr. Susan Tolle, director of the Center for Ethics in Health Care at Oregon Health & Science University. "In fact, with advance care planning, individuals will be much more in control."

Continuing conversation

Tolle and Jaques say the end-of-life care debate taking some parts of the country by storm has been going on -- by turns civil and combative -- in Oregon for decades.

"Oregon already does a great deal of advance planning for end of life," Tolle says. "No matter what happens to the Blumenauer amendment, it's going to have less impact on Oregon than any other state."

An OHSU study, based on interviews with caregivers of people who died of natural causes, found that 78 percent of Oregonians have a written document known as an advance directive specifying what sort of medical care they want -- or do not want -- at the end of life. The document may be a living will or a medical power of attorney or a newer POLST (Physician Orders for Life-Sustaining Treatment) form.

Estimates from other states are much lower, and Tolle believes Oregon's use of advance directives is the highest in the nation.

Oregon ranks fourth -- behind Arizona, Florida and Iowa -- on rate of hospice use by Medicare patients, people over age 65. Nearly half -- 46 percent -- get hospice care when they die. That's double the rate in New York and well above Washington and California.

"There's no question Oregon is exceptional in this regard," says Andy Duncan, director of information services for the National Hospice and Palliative Care Organization. "Your state has long had a public discourse on end-of-life issues, and POLST is another example of how Oregon has been a leader."
Faith Cathcart/The OregonianBy using the hospice system instead of being hospitalized, Arthur Hanlon, 92, is still able to swim when the urge strikes him.
Rugged individualism

Exactly why is hard to know, Tolle says. "But there is something to this rugged individualism, a groundedness, a closeness to the cycle of life, a sense that nobody is going to tell me about how to run my life, including the end of my life."

Tolle sometimes hears from rural Oregonians who say: "Our ranchers could teach your medical students something about the end of life." And she doesn't disagree.

"There's a greater willingness here to have that difficult conversation about the end of life with their doctor and their children," Tolle says. "And chances are, Mom'll tell you what she thinks."

"Oregon is different," Jaques says. "We do a better job of thinking and talking about death and those difficult questions. And we're not opposed to doing things differently."

She is not referring mainly to Oregon's Death With Dignity Act, although that 11-year-old law may be the aspect of end-of-life care in Oregon best known nationally. Oregon is the first state where it became legal for a doctor to prescribe a life-ending drug to a terminally ill patient of sound mind who requests the drug in writing and orally. Oregon's law took effect in 1997, and Washington enacted a nearly identical law this year.

Even opponents of the Oregon Death With Dignity Act acknowledge that end-of-life care and pain control have improved in the decade-plus since it passed -- partly because hospices and other palliative care programs worked hard to make use of the law rare.

During the law's first 11 years, 401 Oregonians ended their lives with a doctor-prescribed drug overdose. That accounts for between one and two out of 1,000 Oregon deaths. Nearly all the Oregonians who ended their lives this way also got hospice care.

Focus on comfort

Advance directives go hand-in-hand with hospice care.

Hospice, which originated in England and spread in the 1970s to the United States, is for patients whose prognosis is measured in months or weeks, not years. Its focus is on comfort care when cure is no longer possible.

Hospice patients have ranged in age from 1 day to 105 years.

Hospices are the fastest-growing providers in Medicare. In 1974, there was one hospice in the United States; today, nearly 5,000. The number of Americans in hospice care has risen steadily from 25,000 in 1982 to 1,400,000 in 2007.

A total of 12,480 Oregonians, the most ever, died in hospice last year. Every Oregonian, even in rural counties, has access to hospice care.

Hospice is an idea, not a place, says Judi Lund Person, vice president for regulatory and state affairs for the national hospice organization. "Hospice care can be delivered wherever the patient is."

Especially in Oregon, that usually means at home. Only two of the state's 55 hospice programs accept inpatients, and more than 90 percent of hospice patients in Oregon are treated at home.

Oregon hospice patients average 67 days in hospice care. But that average masks a range of extremes. A majority still come into hospice less than two weeks before they die -- and many arrive in the last 24 hours.

"What stands out to us are the patients we get to take care of for 24 hours," Jaques says. "Those are the ones that make the hearts of hospice workers hurt."

When a dying patient arrives at the 11th hour, with symptoms out of control and the family in distress, "hospice has to work very hard and very fast to get them to a gentle death," she says. And it's not always possible.

A rare "trifecta"

Advocates say hospice care hits a rare "trifecta" in the health care system. It improves care for patients, it matches the wishes of patients and their families, and it saves money.

"If everything in the health care system worked as well as hospice care, we wouldn't need reform," Jaques says. "This is the part that's not broken."

A study by Duke University researchers found that hospice care reduced Medicare costs by about $2,300 per patient, saving more than $2 billion a year. The savings, compared with nonhospice care of patients with the same diagnoses and life expectancy, increased steadily from about $10 on the 72nd day before death to about $500 four days before death and $750 on the day of death.

"The savings are bound to be larger now," Jaques says, because the Duke study looked at patients who died between 1999 and 2003.

Hospice does not mean no care. Hospice means the patients pick what level of comfort care, pain medicine and medical treatment they want.

"If you want to be in zero pain, and be sleepy, fine," Jaques says. "If you want to be in a little pain but alert because the grandchildren are coming over and you want to read them a story, you can."

The biggest misconception about hospice is that it comes into play when a doctor tells a patient, "There's nothing more we can do for you," says Barb Farmer, a nurse who manages the hospice program at Legacy Health Services.

"But there is something we can do for you. There's a lot."

Hospice not only keeps symptoms in check and relieves pain, but it also offers psychological counseling and helps patients deal with finances, make out a will, arrange for a memorial service -- if they choose. It also can help surviving family members deal with grief and bereavement, for up to a year.

One reason for the fracas over the Blumenauer amendment, OHSU's Tolle says, is that critics wrongly assume that advance care planning is only about setting limits. Often, it is, in accordance with the patient's wishes. But directives -- and the discussions on which they are based -- allow people to request as well as forgo care.

Most people who fill out a POLST form choose something other than "nothing" when specifying the medical treatment they want at the end of life. A typical mix is to say: no cardiopulmonary resuscitation, no ventilator, no dialysis, no intensive care unit -- but yes, intravenous antibiotics and diagnostic tests.

"It's not like saying, 'I don't want any care,'" Tolle says. POLST, like hospice care, "gives you a wonderful opportunity to say no to some things and yes to others."

Don Colburn: 503-294-5124; doncolburn@news.oregonian.com