End-of-Life Choice, Palliative Care and Counseling

Posts Taggeddeath panels

Your Voice: Facing death with dignity, saying no to futile care


July 22, 2011
By Susan Brogden

I want to die like my mother did.

Last Oct. 1, she was diagnosed with ovarian cancer. She was 85. It seemed obvious that treatment would be both brutal and futile. But as a matter of course, she was referred to an oncologist.

The oncologist was positively bullish on treatment. He said her age was not an issue and pronounced her “spry.” He recommended the removal of her entire reproductive system, with chemotherapy to follow. Chemotherapy, he assured us, was “kinder and gentler” than it used to be. Without treatment, he estimated that she would live perhaps three to five months. Treatment might double or triple her time.

We were befuddled. My mother was anything but spry. The treatment sounded gruesome. And what was the benefit of doubling her remaining time, if those extra months were spent recovering from surgery and then enduring chemo? So she declined.

She died not quite three months later, without ever seeing another doctor. She spent her remaining time in her apartment, surrounded by things and people she loved. Hospice of Cincinnati managed her care. And she died in her own bed, with my sisters and me and a Hospice nurse at her side – no 911 calls, no strangers, no flashing lights, no needles, no anguished last-minute decisions.

In 2009, Sarah Palin famously accused the Obama administration of proposing “death panels” to judge seniors’ “level of productivity” and decide “whether they are worthy of health care.” This was a response to a proposed amendment to the Affordable Care Act that would have covered the cost of end-of-the-life planning discussions between doctors and patients. The amendment was dropped. But my mother would have welcomed a compassionate and honest conversation with a physician about the physical, emotional, and – yes – financial cost of resisting her disease.

Money does matter here, not because a life can be assigned a value, but because we need to talk honestly about what’s purchased with the dollars spent on end-of-life treatment for the elderly with terminal conditions. How many patients, if they fully understood their illness and their options, and if costly, unpleasant treatments were neither encouraged nor discouraged but merely explained, might accept death with composure?

Let’s be honest about the realities of terminal illness in the elderly. Let’s embrace palliative care as a matter of course instead of pronouncing them “good candidates” for treatment. Let’s focus on addressing physical, spiritual and emotional comfort. We’ll simultaneously improve the quality of both life and death for those we love, while ensuring that limited health care dollars are used where there’s a real chance of altered outcomes.

Read the story in the Opinion section at Cincinnati.com.

The Death Panel Boogeyman

December 28, 2010
Stephen J. Dunn

In 25 years of law practice I have done estate planning for hundreds of people. Every one of them has wanted a health care durable power of attorney. Such a document enables the client (“patient”) to name someone (“patient advocate”) to make medical decisions for the patient in the event the patient is unable to make them for himself. Those decisions include the decision to terminate or forgo medical care if, in the opinion of the patient’s attending physician, either of these conditions exists: (1) the patient is in a persistent vegetative state without hope of recovery; or (2) the patient is terminally ill and expected to die within six months, and medical treatment would only serve to artificially delay the patient’s death. A health care durable power of attorney also expresses the patient’s wish not to receive medical treatment if either condition persists.

Most health care durable powers of attorney name one or two back-up patient advocates in the event the prior-named patient advocate is unable to act. A health care durable power of attorney becomes part of the patient’s medical record.

A health care durable power of attorney empowers a patient to remain in control of his or her medical care and avoid the indignity and suffering that might otherwise obtain. When my mother was in her final illness, she shared a hospital room with a woman who had been lying in a vegetative state for years. The woman laid in bed all day long with an agape expression on her face. Unable to swallow, she was fed through a tube inserted into her stomach. One can certainly question the wisdom and compassion of such treatment. Taxpayers paying for it is beyond misguided.

A health care bill proposed by House Democrats in 2009 included a provision for Medicare reimbursement to doctors for end-of-life counseling, including the availability of a health care durable power of attorney. Such a provision evinces sound policy. Many seniors cannot afford to have an attorney counsel them about a health care durable power of attorney.

Nonetheless, House Minority Leader John Boehner, R-Ohio, whose judgment I normally revere, seized on the provision and urged that it would “start us down a treacherous path toward government-encouraged euthanasia.” Former Governor of Alaska Sarah Palin raised the spectre of “Obama’s death panels.” Such fearmongering lacks any basis in fact. No one is advocating euthanasia or “death panels.” The health care law enacted in March, 2010 omitted the end-of-life counseling provision.

Reimbursement for end-of-life counseling has recently returned, in the form of a Medicare regulation to take effect January 1, 2011. Once again we are hearing the term “death panels” recklessly cast about in the media. Hopefully such groundless sensationalism will not derail a regulation so clearly in the public interest.

My Near Death Panel Experience

By Earl Blumenauer
Op-Ed Contributor, The New York Times
November 15, 2009, Washington

I didn’t mean to kill Grandma. I didn’t even mean to create death panels.

But now that I and my fellow lawmakers in the House have passed a health care bill, I’m finally free to explain what I learned as the author of the now-famous end-of-life provisions. My experiences during the bizarre controversies of the summer should provide a note of caution about what potential troubles and political distortions might lie ahead as health care legislation moves forward in the Senate, through the reconciliation process and toward a final bill.

This proposal was not even my top health-care priority. During my 13 years in the House, I have written and co-sponsored numerous provisions to change the way the government pays for health care. I am much more interested in extending coverage to the uninsured and moving away from “fee for service” Medicare, which rewards volume over value.

In this context, I found it perverse that Medicare would pay for almost any medical procedure, yet not reimburse doctors for having a thoughtful conversation to prepare patients and families for the delicate, complex and emotionally demanding decisions surrounding the end of life. So when I was working on the health care bill, I included language directing Medicare to cover a voluntary discussion with a doctor once every five years about living wills, power of attorney and end-of-life treatment preferences.

I was especially committed to this issue because helping patients and their families clarify what they want and need is not only good for all Americans, but also a rare common denominator of health care politics. Indeed, the majority of Congressional Republicans supported the similar provisions for terminally ill elderly patients that were part of the 2003 prescription drug bill. In the spring of 2008, Gov. Sarah Palin of Alaska issued a proclamation that stated the importance of end-of-life planning.

With this history in mind, I reached out to Republicans, including conservative members of Congress who often expressed support for the concept, and worked with national experts in palliative care and advocacy groups in devising the end-of-life provision. My Republican co-sponsor, Charles Boustany of Louisiana, told me he had many end-of-life conversations as a cardiovascular surgeon but unfortunately they often were too late. He wished that he could have spoken to patients and their families when they could have reflected properly, not when surgery was just hours away.

While continuing to work on other important health care reform provisions, I was confident that in this area, we had made a contribution that would ultimately be in the final bill. It might even serve as a bridge for bipartisan compromise as we entered the frustratingly contentious end game of finishing the overall legislation.

But the battle lines were being drawn. Little did I know how deep the trenches would be dug, nor how truth would be one of the first, and most obvious, casualties.

The House Ways and Means Committee “mark-up session” of the health care bill, on July 16, lasted all day and into the night. Republican colleagues offered dozens of amendments aimed at numerous provisions. Nowhere was there a single proposal to change the end-of-life language, nor a word spoken in opposition. Not a single word.

Then Betsy McCaughey entered the fray. A former lieutenant governor of New York, Ms. McCaughey had gained notoriety in the 1990s by attacking the Clinton health plan. In a radio interview, she attacked the end-of-life provisions in the health care legislation, claiming it “would make it mandatory, absolutely require, that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner.” The St. Petersburg Times’s fact-checking Web site PolitiFact quickly excoriated her: “McCaughey isn’t just wrong; she’s spreading a ridiculous falsehood.”

But in today’s vicious news cycle, lies take on lives of their own on Web sites, blogs and e-mail chains and go viral in seconds. Ms. McCaughey’s claims were soon widely circulated in the thirst for ammunition against the Democrats’ health care reform plan. “Mandatory counseling for all seniors at a minimum of every five years, more often if the seasoned citizen is sick or in a nursing home,” was how Rush Limbaugh described the provision a week later. “We can’t have counseling for mothers who are thinking of terminating their pregnancy, but we can go in there and counsel people about to die,” he added.

Two days later, the lie found its way into Republican politicians’ statements. “This provision may start us down a treacherous path toward government-encouraged euthanasia if enacted into law,” declared the House Republican leader, John Boehner of Ohio, and Thaddeus McCotter of Michigan. I was shocked. This really struck at the heart of what I was trying to do — to build consensus.

Still, nothing could prepare me for what came next. As luck would have it, on July 28 I was presiding over the House of Representatives when my Republican colleagues decided to have a filibuster of one-minute speeches attacking the Democratic health care reform proposals, or rather, the proposals as seen through their skewed vision.

Representative Virginia Foxx of North Carolina made the singularly outrageous claim that the Republican version of health care reform “is pro-life because it will not put seniors in a position of being put to death by their government.” More groups and politicians repeated and exaggerated the claims.

The most bizarre moment came on Aug. 7 when Sarah Palin used the term “death panels” on her Facebook page. She wrote: “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.”

There is, of course, nothing even remotely like this in the bill, yet other politicians joined the death panel chorus. On “This Week With George Stephanopoulos,” the former Republican House speaker, Newt Gingrich, refused an opportunity to set the record straight. Instead, Mr. Gingrich noted “the bill’s 1,000 pages,” as if the number of pages was an excuse for his misrepresentation, and then declared, “You’re asking us to trust turning power over to the government, when there clearly are people in America who believe in establishing euthanasia.” The Speaker Gingrich I served with a decade ago would have been appalled at the blatant and repeated falsehoods of the Newt Gingrich of 2009.

Such behavior is a graphic example of how the issue of health care was hijacked. Town hall meetings became dominated by people shouting down their opponents and yelling misinformation. Some town hall participants even told politicians to keep government out of their Medicare — something that would be difficult to pull off since Medicare is a government program.

To be fair, some sincerely believed what they were saying to be true, but that only made them more indignant when others challenged them or tried to give them correct information.

The news media was a particular culprit in this drama. This was not just Fox News; seemingly all the national news organizations monitored any meetings they could find between lawmakers and constituents, looking for flare-ups, for YouTube moments. The meetings that involved thoughtful exchanges or even support for the proposals would never find their way on air; coverage was given only to the most outrageous behavior, furthering distorting the true picture.

My office quickly produced testimonials from 300 respected professionals and organizations to set the record straight. Articles followed about how Republicans themselves had supported such provisions. Sites like PolitiFact and Factcheck.org as well as national organizations like the AARP pushed back on the lies.

It didn’t matter. The “death panel” episode shows how the news media, after aiding and abetting falsehood, were unable to perform their traditional role of reporting the facts. By lavishing uncritical attention on the most exaggerated claims and extreme behavior, they unleashed something that the truth could not dispel.

There was a troubling new dynamic: People like Senator Chuck Grassley, an Iowa Republican, were now parroting these falsehoods in their town meetings and letting it drive their policy decisions. (Mr. Grassley: “We should not have a government program that determines if you’re going to pull the plug on Grandma.”) When the most extreme elements peddling false information can cow senior members of Congress into embracing their claims, it does not bode well for either policymaking or for the Republican Party.

ON Sept. 9, President Obama spoke about the health care reform plan to Congress. Although his speech was more thoughtful and less partisan than much of what I’ve seen from presidents in my years in Congress, it was greeted by the call of “You lie!” from a backbencher from South Carolina, Joe Wilson. The accusation came as President Obama was attempting to debunk the many myths about the health care bill; Mr. Wilson’s outburst was the culmination of the summer’s frenzy, of everything that my end-of-life provisions had unwittingly set in motion.

The resulting support from the right wing and the inability of Republican leadership to acknowledge Mr. Wilson’s behavior as crude, unprecedented and inappropriate is telling. The Republican Party has been taken captive by these tactics, the extremists and their own rhetoric.

In a curious way, however, Joe Wilson’s eruption helped turn this particular debate full circle. Energized reform advocates began to push back. Support for the measure increased, and I began to hear, beneath the anger, some honest skepticism, along with an accurate complaint from fellow lawmakers that the language in the provisions was not as clear as it could be. The end-of-life provisions, I am proud to say, are in the bill that the House approved and sent to the Senate, where there is a reasonable chance of passage.

The inability to protect even the smallest element of bipartisan consensus from being used as a savage weapon of political attack makes lawmakers’ tasks harder, and the American public even more disillusioned. But perhaps the troubles of the summer and the success of the fall will provide a road map that leads to members of Congress finally enacting health care reform — and working together again on the long list of America’s unfinished business.

Earl Blumenauer is a Democratic representative from Oregon.

Originally published here in the New York Times, November 14, 2009

Few Americans Make End-of-Life Wishes Known

h5>By Matt Sedensky

The Associated Press
Wednesday, November 11, 2009

FORT LAUDERDALE, Fla. — 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.

Joe Takach kisses Lillian Landry in this Oct. 30, 2009 photo, as she spends her last days in the hospice wing of an Oakland Park, Fla hospital. She made her end-of-life decisions, listing how she wanted to spend her last time and how she wanted to be buried. (J Pat Carter - AP)
Joe Takach kisses Lillian Landry in this Oct. 30, 2009 photo, as she spends her last days in the hospice wing of an Oakland Park, Fla hospital. She made her end-of-life decisions, listing how she wanted to spend her last time and how she wanted to be buried. (J Pat Carter - AP)

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.

Joe Takach, in this Oct. 30, 2009 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. Legislation passed by the U.S. House would nudge more Americans to make their end-of-life decisions. (J Pat Carter - AP)
Joe Takach, in this Oct. 30, 2009 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. Legislation passed by the U.S. House would nudge more Americans to make their end-of-life decisions. (J Pat Carter - AP)

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.”

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, in this Oct. 30, 2009 photo, stands in the hallways of an Oakland Park, Fla. hospital in the hospice wing, reading charts as he makes rounds. Most of his patients have made no end-of-life decisions. (AP Photo/J Pat Carter)
Dr. Joel Policzer, in this Oct. 30, 2009 photo, stands in the hallways of an Oakland Park, Fla. hospital in the hospice wing, reading charts as he makes rounds. Most of his patients have made no end-of-life decisions. (AP Photo/J Pat Carter)

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.

Dr. Joel Policzer checks on Walter Norton in this Oct. 30, 2009 photo, in the hospice wing of an Oakland Park, Fla. hospital. Most of Policzers patients have made no end-of-life decisions. (J Pat Carter - AP)
Dr. Joel Policzer checks on Walter Norton in this Oct. 30, 2009 photo, in the hospice wing of an Oakland Park, Fla. hospital. Most of Policzer's patients have made no end-of-life decisions. (J Pat Carter - AP)

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.

Dr. Joel Policzer checks on Lillian Landry in this Oct. 30, 2009 photo, in the hospice wing of an Oakland Park, Fla. hospital. Unlike most of Policzers patients she made end-of-life decisions. She wants little care that will prolong her life. She even gets a drink of whiskey in the hospice_something that she wanted. (AP Photo/J Pat Carter)
Dr. Joel Policzer checks on Lillian Landry in this Oct. 30, 2009 photo, in the hospice wing of an Oakland Park, Fla. hospital. Unlike most of Policzer's patients she made end-of-life decisions. She wants little care that will prolong her life. She even gets a drink of whiskey in the hospice_something that she wanted. (AP Photo/J Pat Carter)

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!’”

Chart shows reasons patients are admitted to hospices. (P. Prengaman - AP)
Chart shows reasons patients are admitted to hospices. (P. Prengaman - AP)

U.S. End-of-Life experts call for End to Hysteria, Misinformation, Better Choice and Care

Washington, D.C. – Compassion & Choices, the nation’s largest and oldest nonprofit organization working to improve care and expand choice at the end of life, today called for better choice and care at the first-ever national end-of-life symposium convening today through Wednesday at the National Press Club. The symposium addresses end-of-life policy, politics, medicine and ethics in a series of calm, adult presentations about the very difficult situation of end of life care in the US. No hysteria, no childish tantrums about death panels and killing granny. Experts from all over the country are calling for more resources, for hospice care, and public policy informed by facts and analysis. The Symposium brings together end-of-life legal, medical, cultural, religious and political experts. Surviving family members from across the nation described the deaths their loved ones experienced, making a compelling case for better end-of-life choices and care.

“Our nation’s heated debate on health insurance reform has focused attention on end-of-life care. It’s time to go beyond fearful charges and speak calmly and rationally. Compassion & Choices is helping to move our nation’s health care debate beyond misinformation about ‘death panels’ and ‘killing granny’. It is in end-of-life care that the current system most tragically fails patients and the people who love them. Too many people suffer needlessly in their dying, and we as a nation must do better,” said Compassion & Choices President Barbara Coombs Lee in a news conference kicking off the two-day symposium.

 Coombs Lee called for a new “patient-centered” focus in end-of-life care, and released seven principles to realign care and policy to better serve patients. “Today, the experience of patients is lost in a flood of tests and treatments that often subvert any effort to navigate a fitting end to a well-lived life. Changing the focus from the disease to the person who has the disease would create radical change indeed. Decent and simple, the principles are focus, self-determination, autonomy, personal beliefs, informed consent, balance and notice. Compassion & Choices’ 7 Principles for Patient Centered End-of-Life Care are intended to guide policy-makers and other reformers.

Dr. Elmer Huerta, former president, American Cancer Society spoke about making plans for the end of life and the role of your family in these discussions, “End-of-life care is a sensitive and personal issue that everyone will one day face. Families need careful explanations, time to process information, and consistent professional support to meet the challenges to their decision-making capacities. It is important that families and individuals conduct these conversations with their physicians to ensure that their final wishes for end-of-life care are known, respected and fulfilled.”

The Congressional Honorary Host Committee for the Symposium consists of dedicated, distinguished individuals who have worked tirelessly to improve the quality of end of life care. In addition to U.S. Senator Ron Wyden (D-OR), Committee members include U.S. Representatives Earl Blumenauer (D-OR), Peter DeFazio (D-OR), Kurt Schrader (D- OR), David Wu (D-OR), and Debbie Wasserman-Shultz (D-FL).

To read more information about the Compassion & Choices Dignity & Choices Symposium, click here