Archive for Thursday, November 12, 2009

Few Americans make end-of-life wishes known

November 12, 2009


Joe Takach, in this Oct. 30 photo, talks to his friend Lillian Landry as she spends her last days in the hospice wing of an Oakland Park, Fla., hospital. She made her end-of-life decisions on how she wanted to die and to be buried.  Democrats in the U.S. House are trying to nudge more Americans to make their end-of-life decisions.

Joe Takach, in this Oct. 30 photo, talks to his friend Lillian Landry as she spends her last days in the hospice wing of an Oakland Park, Fla., hospital. She made her end-of-life decisions on how she wanted to die and to be buried. Democrats in the U.S. House are trying to nudge more Americans to make their end-of-life decisions.

— 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

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.

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.”

‘Do something!’

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.

Planning ahead

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!’”


Linda Upstill 8 years, 6 months ago

Thank you for including this article in the paper. The article did not mention that this is National Hospice and Palliative Care month and I would assume that is why it is in the news, in addition to the Health Care Bill. It is a news worthy story and not because it saves money. We plan weddings, vacations, retirement and many other aspects of our living. Why not plan for our dying since we cannot escape this end. The Lawrence Area Coalition to Honor End-of-Life Choices (CHEC) has addressed this issue in our community for the past eight years. The mission is to provide education and information about the choices we all have at the end of life. It is about how we LIVE. These decisions are not just for those on Medicare. Any of us could face death at any time, and it is important to understand the choices available in health care today. These choices need to align with what we consider quality of life and the conversation doesn’t end with the physician, but needs to be shared with those we love. CHEC is always available to provide educational presentations on this subject. We routinely offer programs on understanding advance directives and assist people in preparing a written plan. Talking about dying is difficult, but worth the time. It eases the burden on patients and family when the written plan needs to be put in place. As a final note, I agree with the statement that hospice is underutilized. Having hospice in the final months of life provides another avenue of support and comfort to the patient and family members. I hope everyone will realize the benefits of having these conversations and making these choices.

pace 8 years, 6 months ago

Both my parents had hospice care when they were dying. Dad, looking so bad and almost gone, he made his decision. He said no feeding tube, after a couple of weeks, revived, surprising himself and the doctors, took to eating and suffered on for a couple of years. Just like him. One of the few removed from hospice after a short while. Mom, healthy all her life, got the C detected too late for treatment, ran around all summer, then got sick and stiller and stiller, then passed away at home surrounded by her crazy family. We chose to shuttle her from home to respite care, one week home, 5 days at the strangely lovely quiet and pleasant Midland Hospice. Two months seemed like forever, and 85 years like not enough. People should decide, some of the decision others make can make your life a living hell and cost your widow or widower their home and health.

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