Few in U.S. Make End-of-Life Wishes Known

Health Care Overhaul Seeks Provisions for Counseling of Dying Patients

(AP)  Lillian Landry always said she wasn't afraid to die. So when death came last week, the 99-year-old was lying peacefully in a hospice with no needles or tubes. Her final days saw her closest friend at her side and included occasional shots of her favorite whiskey, Canadian Mist.

Landry is an exception. Unlike most Americans, she made her end-of-life decisions years ago: no heroic measures to save her and even instructions on the bar where mourners should gather.

The health overhaul bill that narrowly passed the House on Saturday includes a provision to nudge more people to confront such choices: It would pay for end-of-life counseling for Medicare patients.

Supporters say counseling would give patients more control and free families from tortuous decisions. Critics have warned it could lead to government "death panels." What few on either side note is that counseling could lead more people to choose less intensive care when they're dying, and ultimately trim government-funded health bills.

Hospice care has grown from about 25,000 patients in 1982, when Congress approved coverage under Medicare, to 1.45 million people in 2008. It's for patients who have a prognosis of no more than six months - and it ranges from in-home care to stand-alone centers to special wings in hospitals. It does nothing to artificially lengthen or shorten life, focusing mostly on a patient's comfort.

People on Medicare account for the vast majority of U.S. deaths, and care in the last year of life accounts for roughly a quarter of Medicare's budget. So increased use of hospice could mean sizable savings for the government, particularly if patients enter it sooner.

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A 2007 study published in the journal Social Science and Medicine found that among Medicare patient deaths, those who used hospice saved taxpayers an average $2,309 over their last year. In some cases, the savings were as much as $7,000, depending on the illness and length of hospice stay.

Still, only about 39 percent of Americans who died last year were in hospice. The average patient spent a little more than two months under that care; about a third moved to hospice only in the last week of life.

"It's significantly underutilized. People are referred very late," said Dr. Richard Payne, a Duke University professor who heads the school's Institute on Care at the End of Life.

"Our culture just doesn't tolerate talking about death and dying. And the minute you even start talking about having conversations with a doctor, it's immediately pejoratively labeled as 'You're trying to kill me."'

That perception is precisely what got affixed to the counseling measure in the House bill. Even though the legislation specifies counseling wouldn't force patients to limit efforts to keep them alive, and even with the support of the American Medical Association, AARP and others, suspicion has lingered, encouraged by conservative voices including Sarah Palin.

Dr. Jim Small, a Denver pathologist who belongs to the Christian Medical and Dental Associations, said he feared the provision would be twisted into something more intrusive if bureaucrats lay out the details.

"It's incredible micromanagement," Small said. "End-of-life discussions are part of normal, good patient care, but there's no reason for it to be in the bill."

Even when patients do opt for less invasive, potentially cheaper care, there are limitations. Predicting when someone will die is notoriously inexact. Terminal patients can live for years. So deciding on less intensive treatment isn't always an easy choice.

"The concept of the last year of life is entirely retrospective," said Donald Taylor, a public policy professor at Duke who was the lead author of the study looking at hospice's cost savings. "It's just not that clear when people are dying."

Among those for whom death is clearly imminent, though, advocates argue hospice offers a more compassionate approach.

Dr. Joel Policzer is medical director for VITAS Innovative Hospice Care, which runs the hospice wing at Florida Medical Center where Landry spent her final days. Many of the patients have been hospitalized repeatedly, often getting arguably unnecessary tests before finally succumbing. He characterizes the American medical perspective as "Do something! Do something! Do something!"

Often, Policzer says, a dying elderly patient may have wanted less invasive care. But it doesn't happen.

"It doesn't happen because people are never asked. If they were, people would tell you they want to die at home in bed, surrounded by their family, their friends and their pets," he said. "People who are dying do not need to have needles shoved in them two or three times a day. It's not going to make a difference."

On a recent morning, Policzer stopped to check on 76-year-old Walter Norton, who lay frail and silent in his hospice bed. He had made numerous trips to the emergency room before his family turned to hospice. He had dementia and was suffering from pneumonia and dehydration.

No one's sure exactly what Norton would have wanted. "He wasn't asked, 'What do you want to have done?"' Policzer said.

Five days later, Norton was dead.

Landry, on the other hand, had thought about life's ending years ago.

Four days before she died, her closest friend, Joe Takach, was sitting in a recliner beside her. Her head was tilted, her mouth open and her left hand lay across her waist atop a crisp white sheet.

End-stage heart disease brought hospice care to Landry's home in July; she entered the inpatient unit in late October. Until then, she had continued her routine, going to church every week, making coffee in the morning, sitting for hours in a swivel chair watching birds and squirrels from her bedroom window. She'd make four-course dinners and sometimes stay up talking with Takach until 2 a.m.

Landry had moved in with Takach after Hurricane Wilma destroyed her home four years ago; the 49-year-old retired police dispatcher said it was like having a grandmother again.

He called her the Energizer Bunny. She called herself a tough New Englander.

"You OK?" Takach asked her in one of their final meetings. "I'm OK," she said in a soft, garbled voice, her eyes opened just a slit.

"You don't have any pain?" he asked. "No," she said.

Had Landry not made her wishes known, she likely would have been subjected to CT scans, blood tests, IVs and a feeding tube.

"She would not want that," Takach said. "She would say, 'Enough!"'

[peacefulperson]

Both of my parents died at home. It was a great comfort to them and to me, to know they didn't die in some emotionally and spiritually sterile place with florescent lights glaring at them around the clock with strangers poking them with needles every few minutes.

My aunt died in a hospital, however. Each day we watched her suffer the indignities of different nurses asking her the same questions over and over (how are we feeling today?), of having interns practice giving her morphine injections and teaching doctors expose her while giving a lecture on the disease that was killing her. She was unable to talk at that point and couldn't object to how she was being used.

A living will would have helped her fend all that off.

[democratic_1]

My beautiful wife of 39 years just passed away in October from brain cancer. We had discussed end of life procedures for years and her oncologist knew of her decision to pass away at home. I had never witnessed death before and I was pleasantly surprised, even through my grief, that death can be beautiful and peaceful. My wife's death was very peaceful and beautiful with all her loved ones surrounding her bed. I miss her tremendously but knowing that she went without pain and was not hooked up to artificial life brings me great peace and comfort.

[mollydtt]

For those that wish to be hooked up to a respirator and never give up, even if in a coma for years--those are the very people that need to have their wishes in writing.
Also, if they make those wishes known to a spouse or other relative, and they know that that person will faithfully execute those wishes on their behalf if they are incapacitated--then they need to give that person legal power to speak for them.
A lot of people would rather have hospice care, but that isn't an option if they don't make their wishes legally known.
Needles, and tubes---or pain management and a more home-like environment. Everyone has the right to choose.

[skyk-2009]

After watching the Soap Opera with the Confederate Party and the American Taliban a few years ago with the Woman in Florida, who in their right mind does not have a living will and end of life directives. The last thing I want to do at the end of my life is become a burden on my family OR have those god awful creatures hovering over me to get a few more bucks out of the simple minded.

[chevyhotrod]

"The last thing I want to do at the end of my life is become a burden on my family"

I don't think you have to worry about that. Would they even notice?

[Ms_enza]

"A 2007 study published in the journal Social Science and Medicine found that among Medicare patient deaths, those who used hospice saved taxpayers an average $2,309 over their last year. In some cases, the savings were as much as $7,000, depending on the illness and length of hospice stay."

Uyep, those without hospice had hospital bills totaling $450,000 and those using hospice $443,000....

[chevyhotrod]

I seriously doubt those numbers, but I guess some still can put a price on life.

They saved between $2,300 to $7,000 for a year of life?

I would gladly pay much more for every year of life I get to spend with my family.

If it's my money would you allow me the opportunity to use it how I see fit, or would you allow the government to create a law that would not allow me to seek treatment? So the government can tax my estate at 90%?

Priceless.............

[AlwaysSmiling]

My reply is intended for chevyhotrod:

While I agree with you about gladly paying to spend another year with my family, if it meant I was in a coma or any other form of incapacitation (where I don't know about, nor can enjoy, the time with them), then I don't see a point in spending that extra money. Do you?

As reported, the law only allows for doctors to receive payment for the end-of-life counseling. Currently, if you are sick with a terminal disease, and you have a discussion with your doctor about the "options", YOU PAY FOR IT. This law as reported will make it so you don't pay for it-- it's covered under insurance (or medicare).

Yes, it's probably only a $50.00 discussion (or even a $250.00 discussion depending on how your doctor charges), but let me ask you this: If you find out that you're dying, and choose to not fight it (and spend the time with your loved ones), would you rather have the extra $50.00 (or $250.00) to spend with your loved ones, or do you want to give it to your doctor, so he/she can spend it with their loved ones?

If they take choice out of the equation, then I'll be one of the most vocal supporters of the next Congress fixing that portion of the law (which it CAN be fixed or repealed later on). Until they take choice out of the equation, I say let insurance pay for the discussion. Why take more of the dying person's money?

[DSW358]

Yes,is very good to let your wishes be known. There is no real point for extraordinary effots -- why continue life when the quality is gone? Baby Boomers will recognize this and make changes in the anti-Kevorkian rule which they should. Personally, I don't want to exhaust my hard earned savings on years of nursing home care if it ever came to that. If I can't stay in my own home, I want to go on, leave my estate intact for my loved ones to enjoy.

[Ms_enza]

Like Terri Schiavo, eh?

I'll bet her parents and that wingnut Senator Frist are STILL raving long after the autopsy revealed that half her brain was missing...

"Oh watch her eyes..."

SHE WAS BLIND! As well as brain dead!

If you want your wishes followed: 1) make damned sure the Evangicals and Republicans don't find out about you, and 2) arrange with your doctor to provide you with pills you can begin hoarding early.

[chevyhotrod]

Ms_enze,
Something we both agree on. What they did in Florida was completely dispicable. Just one of the reasons the Republicans lost my respect.

My wife and I do have a living will, because of what happened to Terri.