Category Archives: End-of-Life Care

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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Doctors In Massachusetts Now Required To Offer End-Of-Life Counseling | CommonHealth

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Map of BostonThe state will review whether hospitals are following the rule and compliance could become an issue in a facility’s licensing review. But the state is not focused on enforcement right now.

via Doctors In Massachusetts Now Required To Offer End-Of-Life Counseling | CommonHealth.

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Too little, too late for many New Yorkers seeking hospice

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By Fred Mogul, WNYC

Sandra Lopez and her Chihuahua, Coco, were inseparable. He followed her everywhere, and kept Lopez’s mood up when she was in pain – which was often.

On Oct. 15, Lopez, died at age 49 of pancreatic and vaginal cancer that had slowly spread throughout her body over two years. She left behind a 15-year-old daughter and little Coco. But with hospice care, she spent her last weeks where she wanted to be — at home, with her pain under control.

Sandra was in and out of the hospital in 2014, but for the months she was home, a hospice nurse from Metropolitan Jewish Health System visited once a week to help manage the pain, backed up by a 24-hour, nurse-staffed phone line that Lopez called often.

“Some days the pain is so excruciating,” she told me in August from the couch in her Brooklyn apartment, “that the pain overrides the medication.”

But despite evidence that hospices can greatly relieve discomfort, extend life and save money, and despite a generous hospice benefit available through both Medicare and Medicaid, relatively few people in New York take advantage of it, compared to elsewhere in the country.

Continue reading

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Cambia gives its largest grant ever to UW Medicine: $10 million for palliative care – Puget Sound Business Journal

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Dr. Randy Curtis, right, director of the UW Palliative Care Center of Excellence.

Dr. Randy Curtis, right, director of the UW Palliative Care Center of Excellence.

The grant is Cambia’s largest ever given to any organization and will come in four separate parts, creating three endowments totaling $8 million and $2 million dedicated to immediately improving care at the center.

via Cambia gives its largest grant ever to UW Medicine: $10 million for palliative care – Puget Sound Business Journal.

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New Medicaid rule could hinder shift away from nursing homes

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A younger man holds an elderly man's handBy Christine Vestal
Stateline

For more than 30 years, states have been finding new ways to care for aged and disabled Medicaid beneficiaries without confining them to nursing homes.

In fact, the number of people living in skilled nursing facilities has declined significantly over the last decade, despite a marked increase in the ranks of the elderly in the U.S.

Starting this year, a new federal rule will require states to ensure that long-term care alternatives to nursing homes—such as assisted living facilities, continuing care retirement communities, group homes and adult day care—work with residents and their families to develop individual care plans specifying the services and setting each resident wants.

The overarching goal is to create a “home-like” atmosphere, rather than an institutional one.

The overarching goal is to create a “home-like” atmosphere, rather than an institutional one and to give residents choices about their care.

While nearly everyone supports the concept, states, providers and even some consumer advocates are complaining that the rule could make it difficult for health care providers to fulfill increasing demand for long-term care outside of nursing homes.

Under the rule, for example, elderly people with dementia who enter assisted living facilities should not be subjected to constraints, such as locked exits, unless they are at risk for wandering.

But if they share living space with other residents with dementia who do need to be prevented from wandering, it will be difficult to allow them to leave the building whenever they want without jeopardizing the safety of others.

“The goal was completely laudable,” said Martha Roherty, director of the National Association of States United for Aging and Disabilities, which works to help elders and people with disabilities live in their communities for as long as possible.

“Unfortunately, what’s happened is that it is limiting individuals’ choice of what and where to receive (long-term care) services rather than broadening it, especially as it relates to seniors,” she said. Continue reading

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