Category Archives: End-of-Life Care

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.

nancy-metcalf-570

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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Business, insurer take on end-of-life Issues by phone

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end of life 300

Kate Schleicher. (Photo by Emma Lee/WHYY)

Produced by a partnership that includes WHYY’s NewsworksNPR and Kaiser Health News. 

Imagine you’re at home. Maybe that’s in Florida, Wisconsin, Rhode Island, wherever.

You have cancer. You just had another round of chemo, and the phone rings.

“My name is Kate. I’m a health care counselor,” the gentle voice says from her cubicle in Cherry Hill, N.J..

This is no telemarketing call …  it’s about the end of your life.

Kate Schleicher, 27,  is a licensed clinical social worker, who knows almost as little about you as you do about her.

Except she knows your phone number, your insurance provider and that you are pretty sick. Continue reading

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Medicare experiment could signal sea change for hospice

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Diane Meier 176By Michelle Andrews
KHN / JUL 29, 2014

Diane Meier is the director of the Center to Advance Palliative Care, a national organization that aims to increase the number of palliative care programs in hospitals and elsewhere for patients with serious illnesses.

Meier is also a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

We spoke about a recently launched pilot program under the health law that allows hospice patients participating in the pilot to continue to receive life-prolonging treatment. This is an edited version of that conversation.

Q. There’s a lot of confusion about how hospice care differs from palliative care. Maybe we should start by clearing up what those terms mean. Continue reading

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Death with Dignity Act prescriptions rise 43 percent

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Washington MapThe number of Washington state residents who obtained prescriptions for a lethal dose of drugs under the state’s Death with Dignity Act rose from 121 in 2012 to 175 in 2013, a 43% increase over the previous year.

Of the 159 who died

  • 77 percent had cancer
  • 15 percent had a neuro-degenerative disease, including amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease).
  • 8 percent had other conditions, including heart and respiratory disease,

Their ages ranged from 29 to 95 years. Ninety-seven percent were white, and 76% had some college education. Ninety-five percent lived west of the Cascades.

Of the 159 who died, 119 ingested the medication and 26 did not. In 14 cases, it is unknown whether they took the medicines.

Reasons that patients gave for obtaining the lethal prescriptions included

  • Concerns about loss of autonomy – 91 percent
  • Concerns about loss of dignity – 79 percent
  • Concerns about loss of the ability to participate in activities that make life enjoyable – 89 percent.

Under the state’s Death with Dignity Act, terminally ill adult patients have had the right to ask their physician to prescribe a lethal dose of medication to end their life. Since the law’s enactment, 550 people have acted on that right since the law went into effect.

The 2013 Death with Dignity Act Report and information about the Washington State Death with Dignity Act are on the agency website.

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Medicare to consider paying doctors for end-of-life planning

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End of life factBy Michael Ollove
Stateline staff Writer

The federal government may reimburse doctors for talking to Medicare patients and their families about “advance care planning,” including living wills and end-of-life treatment options — potentially rekindling one of the fiercest storms in the Affordable Care Act debate.

A similar provision was in an early draft of the federal health care law, but in 2009, former Republican vice-presidential candidate Sarah Palin took to Facebook to accuse President Barack Obama of proposing “death panels” to determine who deserved life-sustaining medical care. Amid an outcry on the right, the provision was stripped from the legislation.

Now, quietly, the proposal is headed toward reconsideration — this time through a regulatory procedure rather than legislation. Continue reading

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Making palliative care more available to children

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Conversations matter palliative care

From the National Institute of Nursing Research

January 10, 2014 – New Palliative Care: Conversations Matter campaign helps ensure children with serious illnesses and their families get supportive care

A campaign just launched by the National Institute of Nursing Research (NINR) aims to increase the use of palliative care — comprehensive treatment of the discomfort, symptoms, and stress of serious illness — for children with serious illness.

Palliative care can reduce a child’s pain, help manage other distressing symptoms, and provide important emotional support to the child and family throughout the course of an illness. Continue reading

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