Category Archives: End-of-Life Care

Racial gap in attitudes toward hospice care

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By Sarah Varney

BUFFALO — Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul, at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed.

When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.

Their expectations were low. “They take your money,” Mrs. Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.” Continue reading

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Medicare says doctors should get paid to discuss end-of-life issues

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By Kristian Foden-Vencil, Oregon Public Broadcasting and Stephanie O’Neill, Southern California Public Radio

Remember the so-called death panels?

When Congress debated the Affordable Care Act in 2009, the legislation originally included a provision that would have allowed Medicare to reimburse doctors when they meet with patients to talk about end-of-life care.

But then Sarah Palin argued that such payments would lead to care being withheld from the elderly and disabled. Her comment ignited a firestorm among conservatives and helped fuel the opposition to the legislation. Continue reading

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Death with Dignity participation rises slightly in Washington

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More than half of participants receiving lethal dose of medication are women

From Washington State Department of Health

It’s been six years since Washington’s Death with Dignity Act went into effect and since that time, 725 adults with a terminal illness have chosen to end their lives with a physician-prescribed lethal dose of medication.

Death with Dignity participation rose less than 2 percent in 2014.

There were 176 terminally ill patients in 2014 who received a prescription to help them end their lives. The prescriptions were written by 109 different physicians and were filled by 57 different pharmacists. Of the 176 people who received these prescriptions, 170 are known to have died.

Death with Dignity participation rose less than 2 percent in 2014 compared to the previous year, although more than half of those who died last year were women — up from 48 percent in 2013.

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Those who died after receiving the lethal medications were between the ages of 21 to 101. As in previous years, many patients choosing to receive the medication listed the loss of independence as the reason for participating.

Of the 170 participants in 2014 who died: Continue reading

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In 40 states, a new focus on end-of-life care and counseling

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And younger man's hand holds an elderly man's handOver the next five years, hospices in 40 states will offer end-of-life care and counseling to dying Medicare patients at the same time those patients receive treatment to extend their lives. Typically, patients who are terminally ill must choose one or the other.

By Michael Ollove
Stateline

Beginning next year, the federal government will conduct a five-year, 40-state experiment to determine whether there is a better way to help elderly Americans come to grips with terminal illnesses and prepare to die.

Last month, the Obama administration announced that 141 hospices across the country will offer end-of-life care and counseling to dying Medicare patients at the same time those patients receive treatment to extend their lives. Currently Medicare, the federal health insurance system for people older than 65 or with certain disabilities, requires terminally ill patients to choose one or the other.

Hospice services typically involve a team of doctors, nurses, social workers, bereavement counselors, aides and volunteers who address the physical, social, emotional and spiritual needs of dying patients and their families.

The hope is that by allowing people to pursue both paths, more will opt to receive hospice services that will improve the quality of their remaining days and reduce the cost of end-of-life care. If the experiment is successful, it likely will lead to a similar shift by Medicaid, the joint federal-state health insurance program for the poor, and by private insurers. Continue reading

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Medicare proposes paying doctors to discuss end-of-life care

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‘The care you want at a pivotal time in your life’

By Diane Mapes / Fred Hutch News Service

EKG tracingIf you were diagnosed with a terminal illness, how would you want to die? Do you know? Does your doctor?

These questions are at the heart of a new plan announced by Medicare on Wednesday to reimburse doctors for the conversations they have with patients about end-of-life choices.

The plan, which is open to the public for comment for 60 days, is expected to take effect in January. Continue reading

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‘A terrible way to end someone’s life’

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By Stephanie O’Neill, Southern California Public Radio

Nora Zamichow says if she and her husband, Mark Saylor, had known how doctors die, they may have made different treatment decisions for him at the end of his life (Maya Sugarman/KPCC).

“I felt like I was beating up people up at the end of their life,” she says.

It looks nothing like what people see on TV. In real life, ribs often break and few survive the ordeal.

A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness.

“I felt like I was beating up people up at the end of their life,” she says.

It looks nothing like what people see on TV. In real life, ribs often break and few survive the ordeal.

Gorlitsky now teaches medicine at the University of Southern California and says these early clinical experiences have stayed with her.

“I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew it very likely was not going to be successful. It just seemed a terrible way to end someone’s life.”

Gorlitsky wants something different for herself and for her loved ones. And most other doctors do too: A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness. Continue reading

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The gray areas of assisted suicide

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When J.D. Falk was dying of stomach cancer in 2011, his wife says doctors would only talk about death in euphemisms. (Photo: courtesy of Hope Arnold)

By April Dembosky, KQED

SAN FRANCISCO — Physician-assisted suicide is illegal in all but five states. But that doesn’t mean it doesn’t happen in the rest. Sick patients sometimes ask for help in hastening their deaths, and some doctors will hint, vaguely, how to do it.

This leads to bizarre, veiled conversations between medical professionals and overwhelmed families.

Doctors and nurses want to help but also want to avoid prosecution, so they speak carefully, parsing their words. Family members, in the midst of one of the most confusing and emotional times of their lives, are left to interpret euphemisms.

Doctors and nurses want to help but also want to avoid prosecution, so they speak carefully, parsing their words.

That’s what still frustrates Hope Arnold. She says throughout the 10 months her husband J.D. Falk was being treated for stomach cancer in 2011, no one would talk straight with them.

“All the nurses, all the doctors,” says Arnold. “everybody we ever interacted with, no one said, ‘You’re dying.’”

Until finally, one doctor did. And that’s when Falk, who was just 35, started to plan. He summoned his extended family. And Hope made arrangements for him to come home on hospice. Continue reading

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Facing death but fighting the aid-in-dying movement

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Stephanie Packer (Photo by Stephanie O’Neill / KPCC)

By Stephanie O’Neill
Southern California Public Radio

Stephanie Packer was 29 when she found out she has a terminal lung disease.

It’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of northern California, opted to end her life via physician-assisted suicide in Oregon last fall.

Maynard’s quest for control over the end of her life continues to galvanize the “aid-in-dying” movement nationwide, with legislation pending in California and a dozen other states.

But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.

“Wanting the pain to stop, wanting the humiliating side effects to go away – that’s absolutely natural,” Packer says. “I absolutely have been there, and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”

A recent spring afternoon in Packer’s kitchen is a good day, as she prepares lunch with her four children.

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The Packer family gathers in the kitchen to cook dinner. From left: Jacob, 8; Brian Sr. ; Brian Jr., 11; Savannah, 5; Scarlett, 10; and Stephanie. (Photo by Stephanie O’Neill / KPCC)

“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.

“Yeah!” yells 5-year-old Savannah.

“I do!” says Jacob, 8.

Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes. Continue reading

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These doctors want a choice in how they they die

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Hoping To Live, These Doctors Want A Choice In How They Die

Photo by Anna Gorman

Dr. Dan Swangard (Photo by Anna Gorman/KHN).

By Anna Gorman
KHN

SAN FRANCISCO — Dan Swangard knows what death looks like.

As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety.

He has watched dying drag on for weeks or months as terrified relatives stand by helplessly.

Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.

To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder.

The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.

“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”

That’s one of the reasons Swangard joined a California lawsuit last month seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.

“But I want to be able to make that choice,” he said. Continue reading

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It’s time to have the conversation

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Even if you’re young and healthy, anyone can face a sudden illness or injury. That’s why it’s so important to have a conversation with your loved ones and care providers about your end-of-life goals and preferences now—before a crisis.

This conversation shouldn’t be a one-time event. Instead, it should happen at key points throughout your life, as your values, goals for care and preferences change.

Learn more about the IOM report and find resources about having the conversation at www.iom.edu/theconversation.

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Transforming care through the end of life – Town Hall event, March 19th

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Ira Byock HeadshotWe prepare for life’s most important events – education, weddings, birthdays and vacations – but serious illnesses and death are rarely discussed. Now is the time to have the conversation.

Ira Byock, M.D., author of Dying Well and The Best Care Possible, will describe what it means to “die well” and highlight how we can change the way we plan for and experience the end of life.

Dr. Byock is a leading palliative care physician and public advocate for improving care through the end of life. He serves as executive director and chief medical officer of the Providence Institute for Human Caring of Providence Health & Services.

He is also Professor of Medicine and Community & Family Medicine at the Geisel School of Medicine at Dartmouth.   Continue reading

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Teaching doctors to empathize

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empathy-770By Sandra G Boodman
KHN

The patient was dying and she knew it. In her mid-50s, she had been battling breast cancer for years, but it had spread to her bones, causing unrelenting pain that required hospitalization.

Jeremy Force, a first-year oncology fellow at Duke University Medical Center who had never met the woman, was assigned to stop by her room last November to discuss her decision to enter hospice.

Employing the skills he had just learned in a day-long course, Force sat at the end of her bed and listened intently. The woman wept, telling him she was exhausted and worried about the impact her death would have on her two daughters.

“I acknowledged how hard what she was going through was,” Force said of their 15-minute conversation, “and told her I had two children, too” and that hospice was designed to provide her additional support.

Unlike sympathy, which is defined as feeling sorry for another person, clinical empathy is the ability to stand in a patient’s shoes.

A few days later, he ran into the woman in the hall. “You’re the best physician I’ve ever worked with,” Force remembers her telling him. “I was blown away,” he says. “It was such an honor.”

Force credits “Oncotalk,” a course required of Duke’s oncology fellows, for the unexpected accolade.

Developed by medical faculty at Duke, the University of Pittsburgh and several other medical schools, “Oncotalk” is part of a burgeoning effort to teach doctors an essential but often overlooked skill: clinical empathy.

Unlike sympathy, which is defined as feeling sorry for another person, clinical empathy is the ability to stand in a patient’s shoes and to convey an understanding of the patient’s situation as well as the desire to help. Continue reading

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More states consider ‘Death with Dignity’ laws

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Death-with-dignity advocate Brittany Maynard and husband Dan Diaz at their wedding. Maynard’s death by lethal injection in November drew attention to the aid-in-dying issue now being considered in several states. (PRNewsFoto/Compassion & Choices)

By Michael Ollove
Stateline

After he decided to hasten his death, Erwin Byrnes, who had advanced Parkinson’s disease, set about planning all the details of the memorial service that would follow.

He designated the nearby DoubleTree Hotel in Missoula, Montana, as the venue. He asked his old friend Gene to serve as master of ceremonies. He selected the entire menu—shrimp (because no one doesn’t like shrimp), sandwiches, beer and the hotel’s oatmeal cookies with chocolate and walnuts that he relished. He selected music that would soothe his mourners, including the Frank Sinatra tune “September Song” and Louis Armstrong’s classic “It’s a Wonderful World.”

It came off just as the former high school principal had wished—just as his death had five days earlier on St. Patrick’s Day last year. Byrnes, later described by his wife as “a good Irishman,” had selected that day as most suitable for his departure from this world. On that morning, with his family surrounding him, he squeezed a valve on a tube leading to his body, sending a fatal barbiturate his physician had legally prescribed coursing into his bloodstream.

“It was a beautiful way to be able to end his life,” said Erwin’s wife of nearly 64 years. “In peace and in control and with dignity.”

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It happened only because of a Montana Supreme Court decision in 2009 that has put the state in company with four others that allow assisted suicide or, as proponents prefer, “death with dignity” or “medical aid-in-dying.” The states permit physicians to prescribe lethal medications for terminally ill patients, who then self-administer the medications. Continue reading

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New website helps Washington residents make end-of-life plans

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Honoring Choices logoThe  Washington State Hospital Association (WSHA) and the Washington State Medical Association (WSMA) have launched a new website, www.HonoringChoicesPNW.org, designed to help people create end-of-life care plans and guide them through sharing those plans with loved ones and health care providers. The resources and tools on the website are free and available to anyone.

Health care professionals can also find valuable resources on the site and participate in trainings to prepare them for conversations around end-of-life care, recording patient wishes and ultimately honoring those choices. Continue reading

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Dying and profits: The evolution of hospice – The Washington Post

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Twenty-dollar bill in a pill bottleThe influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.

But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.

On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.

via Dying and profits: The evolution of hospice – The Washington Post.

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