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

[okarol]

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

Posted by dpeck September 02, 2009 04:52AM

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
Categories: Health care reform

[nursewratchet]

I'm so pissed about this issue.  And so pissed about the ill informed, such as Palin, who gives ehalth care workers, especially Hospice Nurses, a bad name.  As an RN, I have taken care of MANY patients who can no longer speak, who are getting unrealistic, and life sustaining treatments, and I always ask the family what ______ would want to be doing.  Countless times, the family says "I don't know, we never talked about it".  As a nurse, and as health care workers, this IS a conversation we should all be having with patients, every time we see them.  Some are not comfortable talking about it with family, as it may seem depressing.  But as a nurse, we are SUPPOSED to ask these questions.  The financial enticemnent will merely ensure that it actually gets asked, and in no way will cut medical care, unless that patient had previously requested to refuse certain things.  SOrry for the rant, but I think if we have to pay some MD's to have the conversation, it will at least happen.   

[Darthvadar]

Oh Dear....

This is a subject I have spoken to my mother about... She wants to recieve good End of Life care, but with no heroics... If she has to come off PD, she wants Palliative Care to kick in...

Sadly in Ireland, there aren't enough Hospice beds for everyone who needs it, and priority is given to those who have malignancy... Thankfully, the hospital she attends has a good Renal ward, and I've known of many people who have died there and have been looked after very well, as have their families and friends... However if for some reason Mum can't get onto this specific ward at the end, I'll be screaming for a Hospice bed for her....

It's SO true that none of us gets out of this life alive, so we have to get the best 'Exit Strategy' available... I remember attending a conference wher such matters were discused, and one of the speakers described life as "A sexually transmited condition with a 100% mortality rate"...

[paul.karen]

i think many people (at least me) want to know more about this end of life speech.  Does it come at a certain age?  If so what age?  I see people on TV celebrating there 104th  birthday.  Should they have been counseled at the age of 60?  65?  75?.

Wouldn't allowing assorted suicide be a much easier option with much less stress involved.  Only people who thought they were dying or wanted to pass on faster would have to go for counseling.
I mean really how long does a doctor when discussing end of life issues actually talk to there patients.  It isn't like this is a five minute talk or is it?

if a baby is born with down syndrome and it is known the child will never talk or communicate or lead a lets say REAl life but will accrue real hospital bills should the baby be put down like a sick puppy?

And much like all of obamas bills my main problem is he is all about JUST PASS IT and we will fill out the blanks at a later date.
You dont start to build a house without first having blueprints in hand leading the way.  Obama does things very backwords IMO>
I have not heard one person say we dont need to fix healthcare.  But we need to have a blueprint before we spend the first dollar.

[nursewratchet]

Here is the conversation, at least in MT family.  We have all talked about it, at every age.   
    " If I can't do ______ on my own, then I don't want to have it done artificially for me".  Thats it.  Someone needs to know WHAT all of us, at any age would or wouldn't want to do, regardless of the age.  Me for example, and my whole family knows this, I wouldn't want to be "kept alive" if I have a stroke for example, if I can't move, eat or speak on my own.  Period.  My Grandma is 97.  In prfect health, thanks God.  But we all know, if something happens that her quality of life would change, she would refuse treatment for it.  Those conversations need ot be had, by everyone, at any age.  Not "figured out" by others at time of crisis. 

[paul.karen]

If your talking about being kept alive artificially isn't this different then the whole obama fiasco about end of life talks.

Before any operation you sign waivers about if something happens.  Do you want us to do all we can to keep you alive or let you pass ect ect.

I am under the impression that these death talks are more along the lines of do you really want this treatment.
example a 78 year old persons kidney go out.  We know they wont get a transplant.  But will they try to talk them away from dialysis for the sake of saving money and keeping a bed open for someone younger?  I am not for coerced involvement in making people feel they are a burdon on there family or even with dialysis there quality of life wont be the same.  is it the same for any of us needless of age>
I feel they will try to push people away from treatments what is the word oh yes Rationing??

Again im for reform but lets keep politicians far from the table when making medical decisions. 

[nursewratchet]

I can't tell you how many people I have taken care of, new to dialysis, who had sudden renal failure, for whatever reason, who could not speak for themselves, and were never going to recover or have any quality of life.  If that would have been the choice of that patient to live that way, fine.  But many times the family is providing the care, because the Dr. suggested it it, and no one ever asked the patient BEFORE they needed this.  Oftentimes, something sudden comes up, and we won't be able to speak for ourselves to let our wishes be known.  Obama is not talking about refusing treatment to anyone because of age or health.  Simply refusing people haveing treatments if they WOULDN'T have wabnted it, could they speak for themselves. 

[Rerun]

This is what should happen. IMO

Before being put on LIFE SUPPORT the patient should be able to answer what year it is..... who they are... and if they want dialysis....  AND after being put on dialysis... a year later.... be able to answer these same questions.

That leaves the option for those who will get better.

I've seen people get drug into dialysis screaming and with a new body part chopped off each month.  God Oh Friday don't you think they should have "the talk"?

WE will ALL die and families should not be held hostage by a new (test) drug or a new this or that which will prolong their life a few days at the cost of their HOME.

We already get rid of the babies we don't want.  I'm against that.  But, end of life should be an informed decision.  People and families need to know the options and costs.  Unfortunately, the bills don't start coming in until about 3 months down the road.  So Grandpa owes $100,000 and then dies the 4th month.  Does that make sense?  To all the people who get a hunk of the $100K it does....

[nursewratchet]

EXACTLY!!!!!!  I think a once a year conversation is a great idea. 

[paul.karen]

Im still  not sure this is what the discussion in the congress is all about.
I think they are leaning more to trying to get people to not accept treatments.  Talking people out of certain treatments that may or may not prolong there lives.
Again before ANY operation a person or there loved one must sign forms that say they do or do not wish to be revived in the case they die on the operating table.  This is a daily occurrence.
I think what is being discussed in congress goes MUCH deeper and they talk to people about do they really wish to live with only one leg at the age of 75?
or your hip is broken and will never be the same ect ect.

A good case is Terri Schivo.  This ladys brain was mush.  Brains dont rejuvenate themselves yet she was on life support for many many years at a great cost.  Look at the contraversay this caused.  Poor lady should have been taken off that machine long before she was.
But if she were in a coma without brain damage to me it would have been a different story.
I just dont want to see people being steered away from a life saving procedure just to save some money.  Or for a group of people to say well she will only live one year longer with the radiation therapy so we should try and get her to deny it?