Category Archives: End-of-Life Care

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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More states adopting law allowing terminal patients to try experimental treatments

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One dye showing 2By Michelle Andrews
KHN

Earlier this month, Arizona voters approved a referendum that allows terminally ill patients to receive experimental drugs and devices. It’s the fifth state to approve a “right-to-try” law this year.

Supporters say the laws give dying patients faster access to potentially life-saving therapies than the Food and Drug Administration’s existing “expanded-access” program, often referred to as “compassionate use.”

Supporters say the laws give dying patients faster access to potentially life-saving therapies. Critics charge such ‘right-to-try” acts are  feel-good laws that don’t address some of the real reasons patients may not receive experimental treatments.

But critics charge they’re feel-good laws that don’t address some of the real reasons patients may not receive experimental treatments.

The legislatures in Colorado, Louisiana, Michigan and Missouri also passed right-to-try laws this year as part of a nationwide effort spearheaded by the conservative Goldwater Institute, which hopes to get right-to-try laws on the books in all 50 states.

The measures generally permit a patient to get access to an experimental drug after it’s passed through phase 1 of a clinical trial, the initial testing in which a drug is given to a small group of people to evaluate its safety and side effects. Continue reading

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Toward ‘A Beautiful Death’

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By Jenny Gold
KHN

The American health care system is poorly equipped to care sensitively for patients at the end of life, a recent report from the Institute of Medicine found. But it is possible, through careful planning, for individuals to choose the kind of death they want.

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Nancy Metcalf

Consumer Reports has released a guide to end-of-life planning for families. The report offers tips for caregivers and individuals and profiles one man’s “beautiful death” at home.

KHN staff reporter Jenny Gold interviewed author Nancy Metcalf about the report. What follows is an edited transcript of their conversation.

Q: You called your report “A Beautiful Death.” What does a beautiful death look like?

Metcalf: A beautiful death is probably different for each person. The gentleman whom we focused on – Paul Sheier, a retired dentist from a suburb of Buffalo — was very clear about what he wanted. He wanted to die at home. He had terminal lung cancer. He preferred to be kept comfortable, to forgo what he believed would be futile chemo, so he could spend his last months of life with his family and friends playing golf rather than at the hospital hooked up to an IV drip. Continue reading

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Too many of us die in hospital instead of home. Here’s why.

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Paula Ron Faber 300

Paula and Ron Faber walk their dog Millie in 2009, between cancer diagnoses. (Photo by Shelley Seccombe)

This story is part of a partnership that includes WNYCNPR and Kaiser Health News. 

It was September 2012 and it was life-long smoker Paula Faber’s third cancer in a decade, but she did not hesitate.

“She was going to fight it every inch of the way,” says her husband Ron Faber.

“I would have rather have had a really okay four-and-a half months than this endless set of treatments.”

By August 2013 after much fighting, Paula Faber died at age 72. Ron Faber now regrets the intervening 11 months of chemotherapy, radiation, painkillers and side effects that reduced his wife to 67 pounds of frayed nerves.

Instead, the pain could have been managed so she could focus on the quality of life.

“I would have rather have had a really okay four-and-a half months than this endless set of treatments,” the stage actor said.

As they confronted Paula’s terminal diagnosis, the decision the Fabers made is among the most difficult anyone can make.

But it turns out that in the New York metropolitan region, patients opt for aggressive treatment much more often than other Americans. Continue reading

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Dying in America is harder than it has to be, expert panel says

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It is time for conversations about death to become a part of life.

That is one of the themes of a 500-page report, titled “Dying In America,” releasedWednesday by the Institute of Medicine.

The report suggests that the first end-of-life conversation could coincide with a cherished American milestone: getting a driver’s license at 16, the first time a person weighs what it means to be an organ donor.

Follow-up conversations with a counselor, nurse or social worker should come at other points early in life, such as turning 18 or getting married.

The idea, according to the IOM, is to “help normalize the advance care planning process by starting it early, to identify a health care agent, and to obtain guidance in the event of a rare catastrophic event.”

The IOM plans to spend the next year holding meetings around the country to spark conversations about the report’s findings and recommendations. “The time is now for our nation to develop a modernized end-of-life care system,” said Dr. Victor Dzau, president of the IOM. Continue reading

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