Tagged End Of Life

Docs In Northwest Tweak Aid-In-Dying Drugs To Prevent Prolonged Deaths

Two years after an abrupt price hike for a lethal drug used by terminally ill patients to end their lives, doctors in the Northwest are once again rethinking aid-in-dying medications — this time because they’re taking too long to work.

The concerned physicians say they’ve come up with yet another alternative to Seconal, the powerful sedative that was the drug of choice under Death with Dignity laws until prices charged by a Canadian company doubled to more than $3,000 per dose.

It’s the third drug mixture recommended by the doctors whose medication protocols help guide decisions for prescribers in the six U.S. states where aid-in-dying is allowed.

The first Seconal alternative turned out to be too harsh, burning patients’ mouths and throats, causing some to scream in pain. The second drug mix, used 67 times, has led to deaths that stretched out hours in some patients — and up to 31 hours in one case.

“[Twenty percent] of the cases were 3 hours or more before death, which we think is too long,” said Robert Wood, a retired HIV/AIDS researcher who volunteers with the advocacy group End of Life Washington, in an email. “The longest was 31 hours, the next longest 29 hours, the third longest 16 hours and some 8 hours in length.”

Patients and families are told to expect sleep within 10 minutes and death within four hours. When it takes far longer, family members get worried, even distressed, said Dr. Carol Parrot, a retired anesthesiologist who has prescribed drugs for dozens of aid-in-dying patients in Washington.

The doctors say this can be addressed with larger doses of the three drugs they have been using — diazepam, often used to treat anxiety; digoxin, used to treat heart issues; and morphine, a narcotic pain reliever — plus another heart medication, propranolol, in a four-drug cocktail aimed at quickly inducing death, Wood said.

Parrot and Wood are part of a seven-member group of doctors in the Northwest who came up with the three-drug protocol after Valeant Pharmaceuticals Inc., acquired the rights to secobarbital, known as Seconal, in 2015 and raised the price sharply.

“We wanted the new drug regime to be safe, reliable and effective — and cost $500 or less,” said Parrot.

Since 1997, when Oregon’s Death with Dignity law became the first in the nation, doctors had relied on fast-acting, relatively inexpensive barbiturates — either secobarbital or pentobarbital — for patients with terminal diagnoses who sought aid in dying in Oregon, Washington, California, Colorado, Montana and Vermont. The practice also has been approved in Washington, D.C., but is being reviewed by Congress.

Pentobarbital became unavailable after drugmakers blocked its use in U.S. death penalty executions.

Concerns about the overly long deaths surfaced last summer, Parrot said. Nearly all of the problems occurred in patients already taking high doses of opiates.

“We run into patients who are so tolerant or dependent on narcotics that even the astronomically high doses of oral narcotics in our prescription do not stop them from breathing,” she said.

If patients have diseases that slow or alter normal organ function, it can affect the speed and amount of drugs absorbed in the small intestine, metabolized in the liver and sent to the rest of the body. Very large patients, too, may require larger doses.

Deaths aren’t required to be supervised, and no doctor was present with the unidentified patient who took 31 hours to die, so doctors would only be speculating about the reason, Parrot said.

Not all patients — or doctors — experienced overly long deaths with the previous drug mixture. Dr. Lonny Shavelson , a Berkeley, Calif., physician who has supervised two dozen aid-in-dying deaths under California’s new law, said it worked fine.

“My personal experience is I haven’t had long deaths with it,” Shavelson said.

And not all doctors think long deaths are a problem. In Oregon, even with fast-acting barbiturates, time to death has ranged from one minute to 104 hours during the 20 years the law has been in effect, state records show.

“I’ve heard stories where it took quite a number of hours to die, and it was fine,” said Dr. David Grube, an Oregon-based medical director for the advocacy group Compassion & Choices.

pat-hansen_vertical

Pat Hansen, 69, of Wenatchee, Wash., chose to end her life with lethal medications under Washington’s aid-in-dying law. Hansen, who had end-stage kidney failure, congestive heart failure and other ailments, went to sleep within minutes after taking the drugs and stopped breathing within 20 minutes, her family said. (Courtesy of Scott Kreiter)

Scott and Amy Kreiter, of Wenatchee, Wash., didn’t know what to expect when Scott’s mother, Patricia Hansen, 69, decided to take the lethal drugs on Dec. 26, 2016. Hansen, a lively woman who once ran a gourmet ice cream business, had endured frequent hospitalizations for end-stage kidney failure, congestive heart failure and other ailments.

“She said, ‘I want to listen to Willie Nelson, I want to play a game of Scrabble, I want to drink a Rob Roy or two, and then I want to be done,’” Scott Kreiter, 47, said.

Hansen proceeded to “kick our butts” at Scrabble, her son said — including fulfilling a goal of getting a triple-word score with a dirty word. Then she mixed the drugs with scotch and drank the solution.

“She didn’t complain. She just took it,” her son recalled. “She said, ‘You thought I’d chicken out, didn’t you?’”

Within two minutes of downing the mixture, Hansen was asleep. Within 20 minutes, her breathing had stopped.

“We thought it would take one to two hours,” Amy Kreiter said. “It if had gone on for hours, we would have thought we did it wrong.”

Critics of aid-in-dying say growing reports of overly long deaths underscore their objections. Dr. David Stevens, CEO of Christian Medical & Dental Associations, which has tried to halt or reverse laws, said coming up with new drug protocols could eventually be a step toward Holland’s practice of allowing euthanasia by lethal injection “so the patient could be killed ‘humanely.’”

“We are heading down that same path,” Stevens said in an email.

But Parrot and other frequent prescribers of aid-in-dying drugs say they are looking for the best way to honor the wishes of patients in states where the practice is allowed. Doctors recently began using the newest drug mixture and will gather data about its effectiveness.

“We’re not experimenting,” Parrot said. “We are working with available drugs to provide dying patients a comfortable, peaceful death that is reliable and safe for them and comforting for their families as well.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

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Right-To-Die Fight Hits National Stage

Opponents of aid-in-dying laws are claiming a small victory. They won the attention of Congress this week in their battle to stop a growing movement that allows terminally ill patients to get doctors’ prescriptions to end their lives.

The Republican-led effort on Capitol Hill to overturn the District of Columbia’s aid-in-dying law could fail by Friday. But advocates worry the campaign will catalyze a broader effort to fully ban the practice, which is legal in six states and being considered in 22 more.

“The D.C. legislation has catapulted the issue of medical aid in dying onto the federal agenda at a time when Congress has the power to enact a ban on this end-of-life care option nationwide — even criminalizing the practice in the six states where this option is currently authorized,” warned Jessica Grennan, national director of political affairs and advocacy for Compassion & Choices, which supports right-to-die laws.

“If that happens, it will set the end-of-life care movement back to the last century,” Grennan said.

No matter how the effort plays out, both sides agree that the debate on Capitol Hill, featuring a Republican moral protest, could be only a taste of what’s to come.

In a vote that hewed closely to party lines, the Republican-controlled House Oversight Committee on Monday approved a bill that would knock down D.C.’s law, which won approval from the mayor and City Council in December. While D.C.’s law mirrors those passed in other states, Congress has unique power to intervene in D.C.’s affairs. Under the Home Rule Act of 1973, Congress has 30 legislative days to overturn any law D.C. passes.

“It’s of deep, personal moral conviction that I stand in opposition” to D.C.’s law, said Rep. Jason Chaffetz of Utah, who chairs the committee, in Monday’s hearing.

The clock is running out on his effort. Republicans in the House and Senate have introduced joint resolutions attempting to block D.C.’s law, but the bills would need to pass the full House and Senate and gain President Donald Trump’s signature. Trump has declined to take a public stance on the matter. If those steps don’t happen by Friday, D.C.’s law will take effect.

Dr. David Stevens, CEO of the Christian Medical & Dental Associations, which opposes medical aid in dying, said even if Republicans fail to overturn D.C.’s law, their efforts may have broader impact.

“As representatives and senators become more educated about the dangers of physician-assisted suicide,” Stevens said, “I wouldn’t be surprised” if members of Congress introduce laws to “prohibit or at least more closely regulate” the practice.

(Courtesy of Amazon.com)

(Courtesy of Amazon.com)

If Congress passes such a law, the only hope for advocates such as Grennan “would be for the Supreme Court to intervene,” she said. But she noted that Trump’s pick for the Supreme Court, Neil Gorsuch, a federal appellate judge on the U.S. Court of Appeals for the 10th Circuit, has published a book against aid-in-dying efforts. The book, she said, notes “the Supreme Court’s power to overturn the state medical aid-in-dying laws.”

Away from Capitol Hill, the aid-in-dying movement has gained steam: The practice is legal in Oregon, Washington, Vermont, Colorado, California and Montana.

Energized by victories in California and Colorado last year, aid-in-dying supporters are pushing ahead to battlegrounds nationwide. So far this year, 21 states have introduced aid-in-dying legislation, according to Compassion & Choices. And in South Dakota, proponents are trying to get the practice approved through a ballot initiative.

Hawaii, Maryland and Maine appear the most likely to pass new legislation this year, said Peg Sandeen, executive director of the Death With Dignity National Center, another national advocacy group.

But opponents have beaten back similar measures in many states in recent years. And in Alabama, South Dakota and New York, they have gone on the offensive, introducing bills to preemptively outlaw the practice or prohibit insurance from paying for the lethal drugs.

Chaffetz, who is leading the charge to overturn D.C.’s law, has enraged Democrats and D.C. officials, who accuse him of overreaching his power by meddling in local affairs. But Chaffetz and fellow House Republicans at Monday’s vote said moral concerns trump local autonomy.

“Only God gets to decide” when a person’s life ends, declared Rep. Paul Mitchell, a Michigan Republican, during the debate.

If Republicans fail this week, they could attack D.C.’s Death With Dignity law in April, when Congress approves D.C.’s proposed budget. D.C. has proposed to spend some local money to build a database tracking the assisted-dying program.

Republican Sen. James Lankford of Oklahoma, who introduced the Senate resolution blocking the bill, also made a legal argument, citing a 1997 law passed under President Clinton that bans the use of federal money for physician-assisted death. Because of that law, Medicare and the Department of Veterans Affairs do not pay for the lethal drugs, so patients must pay out-of-pocket or use private or state-funded insurance. Lankford challenged D.C. to show that its assisted-dying program wouldn’t conflict with that law.

Advocates dismissed that argument. Sandeen, of the Death With Dignity National Center, said D.C.’s program will not use any federal money to help people die. She called the legal argument a “red herring effort,” aimed at distracting attention from politicians’ true reasons for trying to strike down D.C.’s law.

“I’d rather that they said, ‘For religious purposes, I disapprove of this law,’” she said.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Aging, Mental Health, Syndicate

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Docs Bill Medicare for End-of-Life Advice As ‘Death Panel’ Fears Reemerge

End-of-life counseling sessions, once decried by some conservative Republicans as “death panels,” gained steam among Medicare patients in 2016, the first year doctors could charge the federal program for the service.

Nearly 14,000 providers billed almost $35 million — including nearly $16 million paid by Medicare — for advance care planning conversations for about 223,000 patients from January through June, according to data released this week by the Centers for Medicare & Medicaid Services. Full year figures won’t be available until July, but use appears to be higher than anticipated.

Controversy is threatening to reemerge in Congress over the funding, which pays doctors to counsel some 57 million Medicare patients on end-of-life treatment preferences. Rep. Steve King, R-Iowa, introduced a bill last month, the Protecting Life Until Natural Death Act, which would revoke Medicare reimbursement for the sessions, which he called a “yet another life-devaluing policy.”

“Allowing the federal government to marry its need to save dollars with the promotion of end-of-life counseling is not in the interest of millions of Americans who were promised life-sustaining care in their older years,” King said on Jan. 11.

While the fate of King’s bill is highly uncertain — the recently proposed measure hasn’t seen congressional action — it underscores deep feelings among conservatives who have long opposed such counseling and may seek to remove it from Medicare should Republicans attempt to make other changes to the entitlement program.

Proponents of advance care planning, however, cheered evidence of program’s early use as a sign of growing interest in late stage life planning.

“It’s great to hear that almost a quarter million people had an advance care planning conversation in the first six months of 2016,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit. “I do think the billing makes a difference. I think it puts it on the radar of more physicians.”

Use of the counseling sessions are on track to outpace an estimate by the American Medical Association, which projected that about 300,000 patients would receive the service in the first year, according to the group, which backed the rule.

Providers in California, New York and Florida led use of the policy that pays about $86 a session for the first 30-minute office-based visit and about $75 per visit for any additional sessions.

The rule requires no specific diagnosis and sets no guidelines for the end-of-life discussions. Conversations center on medical directives and treatment preferences, including hospice enrollment and the desire for care if patients lose the ability to make their own decisions.

The new reimbursement led Dr. Peter Sutherland, a family medicine physician in Morristown, Tenn., to schedule more end-of-life conversations with patients last year.

“They were very few and far between before,” he said. “They were usually hospice-specific.”

Now, he said, he has time to have thorough discussions with patients, including a 60-year-old woman whose recent complaints of back and shoulder pain turned out to be cancer that had metastasized to her lungs. In early January, he talked with an 84-year-old woman with Stage IV breast cancer.

“She didn’t understand what a living will was,” Sutherland said. “We went through all that. I had her daughter with her and we went through it all.”

The conversations may occur during annual wellness exams, in separate office visits or in hospitals. Nurse practitioners and physicians’ assistants may also seek payment for end-of-life talks.

The idea of letting Medicare reimburse such conversations was first introduced in 2009 during debate on the Affordable Care Act. The issue quickly fueled allegations by some conservative politicians, such as former Republican vice presidential candidate Sarah Palin and presidential candidate John McCain, that they would lead to “death panels” that could disrupt care for elderly and disabled patients.

The idea was dropped “as a direct result of public outcry,” King said in a statement.

“The worldview behind the policy has not changed since then and government control over this intimate choice is still intolerable to those who respect the dignity of human life,” he said.

But in 2015, CMS officials quietly issued the new rule allowing Medicare reimbursement as a way to improve patients’ ability to make decisions about their care.

End-of-life conversations have occurred in the past, but not as often as they should, Malley said. Many doctors aren’t trained to have such discussions and find them difficult to initiate.

“For a lot of health providers, we hear the concern that this is not why patients come to us,” Malley said. “They come to us looking to be cured, for hope. And it’s sensitive to talk about what happens if we can’t cure you.”

2014 report by the Institute of Medicine, a panel of medical experts, concluded that Americans need more help navigating end-of-life decisions. A 2015 Kaiser Family Foundation poll found that 89 percent of people surveyed said health care providers should discuss such issues with patients, but only 17 percent had had those talks themselves. (KHN is an editorially independent program of the foundation.)

Use of the new rule was limited in the first six months of 2016. In California, which recorded the highest Medicare payments, about 1,300 providers provided nearly 29,000 services to about 24,000 patients at an overall cost of about $4.4 million — including about $1.9 million paid by Medicare.

The data likely reflect early adopters who were already having the talks and quickly integrated the new billing codes into their practices, said Dr. Ravi Parikh, an internal medicine resident at Brigham and Women’s Hospital in Boston, who has written about advance care planning. Many others still aren’t aware, he said.

Data from Athenahealth, a medical billing management service, found that only about 17 percent of 34,000 primary care providers at 2,000 practices billed for advance care planning in all of 2016.

The numbers will likely grow, said Malley, who noted that requests from doctors for advance care planning information tripled during the past year.

To counter objections, providers need to ensure that informed choice is at the heart of the newly reimbursed discussions.

“If advance care planning is only about saying no to care, then it should be revoked,” Malley said. “If it truly is about finding out patient preferences on their own turf, it’s a good thing.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Medicare, Syndicate

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Death Doesn’t Have To Be So Scary

Since he watched his mother drop dead, Richard Bridgman’s fear of death has left him emotionally paralyzed.

It was right around Thanksgiving — nearly 45 years ago — and Bridgman was sleeping overnight on his mom’s living room couch.

“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be okay. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”

Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Ill., area, he has spent most of his adult years trying to cope with — if not overcome — his immense fear of death.

“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”

Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where time is commonly measured in 140 characters and 6-second sound bites, life would appear to be dissected into so many bite-sized morsels that discussion of death doesn’t even seem to fit into the equation.

Kelvin Chin (Courtesy of Kelvin Chin)

Kelvin Chin (Courtesy of Kelvin Chin)

“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”

But wait. What if death isn’t actually unhappy? What if it simply — is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to emotionally deal with death. That question was posed to him by Chin, who he discovered via a Google search. Several supportive phone consultations with Chin — combined with a simple meditation process that Chin teaches — have helped to keep Bridgman’s fears under control.

“I spent so much money on psychiatrists and psychotherapists — none of them did any good,” says Bridgman. But Chin steered Bridgman towards meditation. “Meditation is better than medicine,” Bridgman said.

Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.

“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”

“Very few people die screaming. They just go to sleep.”

But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was two years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.

Donna Authers (Courtesy of Donna Authers)

Donna Authers (Courtesy of Donna Authers)

It was Authers’ grandmother — while dying from cancer — who taught Authers the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days. But her grandmother could sense her granddaughter’s terrible fear.

That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve. “I was no longer afraid of death and dying,” recalls Authers.

Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.

Increasingly, however, Chin has found that Millennials — more than any other demographic — fear death the most.

“It’s the downside of social media,” said Chin. “The bombardment and speed of communication leads to an overload that can trigger a fear of death.”

Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”

In times of political upheaval— particularly when people are reminded of their mortality — the fear of death increases even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.

“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”

Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.

A terminally-ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.

“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Categories: Public Health, Syndicate

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