Category Archives: Palliative 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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Pain by the numbers

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 Illustration of the pain pathway in René Descartes' Traite de l'homme (Treatise of Man) 1664

Illustration of the pain pathway in René Descartes’ Traite de l’homme (Treatise of Man) 1664

By Rachel Gotbau
KHN

In one of the largest population studies on pain to date, researchers with the National Institutes of Health estimate that nearly 40 million Americans experience severe pain and more than 25 million have pain every day.

 

Those with severe pain were more likely to have worse health status, use more health care and suffer from more disability than those with less severe pain. Continue reading

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Pain patients say they can’t get medicine after crackdown on illegal Rx drug trade

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Lesley Young testified that she has driven 100 miles to try to find a pharmacy that would fill painkiller prescriptions for her husband Chris. (Photo by Jessica Palombo/For KHN)

By Rachel Gotbaum
KHN

The accident happened 10 years ago when Chris Young was 35.

He owned a salvage yard in Maui, Hawaii, and his employee had hoisted a junker on a machine called an excavator when the hydraulics gave out.

The car fell on him from above his head, smashing his spine.

“He was crushed accordion-style,” says his wife Lesley.

The accident left Young with a condition known as “partial paraplegia.” He can’t walk and he needs a wheelchair, but he does have some sensation in his legs. Unfortunately for Young, that sensation is often excruciating pain.

“It feels like electric shocks, like lightning bolts going down my legs. And when it gets down to the bottom, it feels like someone is driving a big metal spike up my legs,” says Young.

To control the pain, Young, who has since moved to Florida, needs high doses of narcotic painkillers, but he can’t always fill his doctor’s prescription.

He is not alone. In what may be an unintended side effect of a crackdown on prescription drug abuse, Young and other legitimate chronic pain patients are having increasing trouble getting the medicine that allows them to function on a daily basis. 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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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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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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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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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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Hospitals must disclose how mergers will affect access to reproductive services, end-of-life care

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H for hospitalHospitals and medical groups in Washington state planning to merge or affiliate must now disclose how the proposed agreement will affect access to reproductive services, such as contraception and abortion, and end-of-life care, according to new rules announced Monday by the Washington State Department of Health.

Earlier this year, Gov. Jay Inslee directed the Department of Health to assess its rules governing such mergers in response to growing concerns that hospitals merging with hospital systems run by the Roman Catholic Church would no longer provide contraceptive prescriptions, contraceptive services, such as tubal ligation or vasectomy, and abortion or end-of-life care that the church considered to be euthanasia.

Under the new rules, before transfer of ownership can take place, the parties involved must submit copies of policies on admission, non-discrimination, end-of-life care, and reproductive health care services to state health officials. This information must then be posted on both the hospital and Department of Health websites for the public to see. The rules go into effect early next year.

“As hospitals look to join together, many people have asked for the opportunity to provide input into these mergers. Requiring the certificate of need process will allow the public to provide comments,” the Washington State Department of Health said in a statement announcing the new rules.

Here is the full text of the announcement:

Hospital mergers/expansion rules amended to give the public a voice

OLYMPIA – Rules filed with the state code reviser today will improve access to information on services hospitals provide and give people a voice on proposed hospital affiliations.

The state Department of Health filed the rule revision after Gov. Jay Inslee directed the agency to assess rules about when a certificate of need review should be required with regard to changes in hospital control. The governor also asked the agency to consider ways to improve how information about medical facilities is made available to the public.

The certificate of need review process supports planned and orderly development of health care services and facilities. Certificate of need work includes developing new hospitals and expanding existing hospitals; the sale, purchase, or lease of all or part of a hospital; adding bed capacity in a nursing home; and more.

The rules filed today require a certificate of need application for any sale, purchase, or lease of a medical facility. That includes when a hospital enters into an arrangement that transfers control of the facility from one entity to another.

Before a transfer of ownership can take place, facilities must submit copies of policies on admission, non-discrimination, end-of-life care, and reproductive health care services to state health officials. All of that information will be posted on both the hospital and Department of Health websites for public access.

As hospitals look to join together, many people have asked for the opportunity to provide input into these mergers. Requiring the certificate of need process will allow the public to provide comments. The rule also makes important information about the facilities available to everyone.

The new rules go into effect Jan. 23, 2014 – 31 days after filing with the code reviser. After that date, all hospitals have an additional 60 days to submit policies to the department.

The updated certificate of need process helps ensure transparency with health care facilities and those who use them, and helps people make informed decisions on where to get medical care.

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Beginning end-of-life care at the dinner table

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Michael Hebb

By Ankita Rao

Michael Hebb wants you to pass the butter, and then talk about passing on.

As the founder of “Let’s Have Dinner and Talk About Death,” he urged Americans to engage in a conversation about how they want to die, a conversation that could change the high cost of caring for the terminally ill and grant patients their ultimate requests.

“Our hope is to spark the gentlest revolution imaginable,” he said at the TEDMED conference on Thursday evening.

Hebb’s talk was part of a session called “Welcoming Death Into Life,” which included talks by an opera singer who had undergone two lung transplants, an ER doctor-turned-engineer, and an anthropologist who studied an Indonesian tribal community that sometimes waits years to have a funeral when someone dies.

Hebb, a culinary showman, pointed to statistics that show that 75 percent of the population said they wanted to die at home, but only 25 percent did. The audience also murmured in surprise at a slide showing that 43 percent of Medicare recipients spend all of their assets on end-of-life care.

But journalist Amanda Bennet, author of “The Cost of Hope,” offered the counterpoint and a window into why end-of-life care is so expensive as she told her story about how difficult it is to allow a family member to die, even when his prognosis is grim.

Bennet’s husband lived for seven years after being diagnosed with kidney cancer, a time span that included close calls, aggressive therapy and remission. She said that she and her husband were an adventurous and strong couple, and the idea that there was no hope never crossed their minds.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative for letting go,” she said.

Bennet said that she and her husband had advance directives – a sort of living will for ill patients – and expert advice not to continue his treatment, but there was a combination of denial and optimism that overshadowed decisions during that time.

Hebb said wills and directives should be openly discussed with close friends and family. Coupled with the power of sharing a meal, he said a dialogue about death could lead to a more fulfilling life, if patients were willing to have it.

“We need a patient revolution to change the cost of death,” he said.

And while Bennet said she wouldn’t replace their last seven years together, she realized when her husband died that they had never said goodbye.

“We never got the chance to turn to each other to say, ‘Hey buddy, it’s been a hell of a ride’,” she said.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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