Category Archives: End-of-Life Care

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.

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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 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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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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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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Growth of Catholic hospitals — by the numbers

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by Nina Martin
ProPublica

The past few years have been a period of unprecedented turmoil for the hospital industry.Now, a new report confirms that Catholic hospitals are emerging as one of the few clear winners — and the study adds its voice to a growing chorus of warnings about how church doctrine could affect women’s reproductive health care.

The report is by MergerWatch, a New York–based nonprofit that tracks hospital consolidations, and the American Civil Liberties Union. It traces the growth of Catholic hospitals across the U.S. from 2001 to 2011, the most recent year for which complete data is available.

It focuses on full-service, acute-care hospitals with emergency rooms and maternity units —settings in which Catholic religious teachings are most likely to come into conflict with otherwise accepted standards of reproductive care.

The report’s major finding is illustrated in the chart below: At a time when other types of nonprofit hospitals have been disappearing, the number of Catholic-sponsored hospitals has jumped 16 percent.

Over the last decade, only for-profit hospitals have fared better. The gains by Catholic providers are especially striking considering the sharp decline in the number of other religious-owned hospitals during the same period.

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Source: MergerWatch

The numbers reflect the huge wave of hospital consolidations triggered by health care reform. For reasons that the report doesn’t delve into, Catholic hospitals have weathered those market upheavals better than other types of community hospitals—so well that they now make up 10 of the 25 largest health-care networks in the U.S.

Not surprisingly, the number of hospital beds at Catholic providers has also increased faster than at other types of nonprofit hospitals.

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Source: MergerWatch

According to the report, Catholic acute-care hospitals now account for 1 in 9 hospital beds around the country, with much higher concentrations in some states, including Washington (the subject of this ProPublica story), Wisconsin, and Iowa.

(When other types of facilities are included, the Catholic share of hospital beds is closer to 1 in 6, according to this fact sheet.)

Keep in mind that these numbers are from 2011. Since then, according to the report, the largest Catholic health hospital networks, Ascension Health and Catholic Health Initiatives, have grown by another 30 percent or more.

“The trend we’ve identified is continuing and perhaps even accelerating,” Lois Uttley, MergerWatch’s director, said in an interview. “These large Catholic health systems are expanding aggressively, taking over other hospitals and smaller health systems, gobbling up non-Catholic hospitals, and gaining more financial power.”

However, the report’s immediate concern isn’t the hospitals’ economic clout, but rather the impact of Catholic health care policy, as embodied by controversial guidelines known as The Ethical and Religious Directives.

Issued by the U.S. Conference of Catholic Bishops, the ERDs govern medical care at all Catholic hospitals — and influence care at secular hospitals that merge or affiliate with Catholic providers.

The directives ban elective abortion, sterilization, and birth control and restrict fertility treatments, genetic testing, and end-of-life options.

Depending on the hospital and the local bishop, they may also be interpreted to limit crisis care for women suffering miscarriages or ectopic pregnancies, emergency contraception for sexual assault, and even the ability of doctors and nurses to discuss treatment options or make referrals.

A spokesman for the Catholic Health Association of the United States said he had not seen the report and could not comment. But in a statement responding to  a recent New York Times editorial, the association provided a spirited defense of its member hospitals.

“Catholic hospitals in the United States have a stellar history of caring for mothers and infants. Hundreds of thousands of patients have received extraordinary care …There is nothing in the Ethical and Religious Directives that prevents the provision of quality clinical care for mothers and infants in obstetrical emergencies. Their experience in hundreds of Catholic hospitals over centuries is outstanding testimony to that.”

But Louise Melling, the ACLU’s deputy legal director and a coauthor of the new study, sees danger as Catholic hospitals expand their market share and the ERDs extend their reach as well.

She cites the case of a Michigan woman who was allegedly denied proper care for a miscarriage at a Catholic hospital in Muskegon because of its interpretation of the directives banning abortion.

In that case — the centerpiece of a high-profile lawsuit by the ACLU against the Catholic bishops last month — the hospital in question had been secular until 2008, when it was merged with a Catholic health care system.

“Ordinary people are not following hospital mergers and acquisitions,” Uttley said. “They don’t know who runs their hospital, especially if it doesn’t have a Catholic name. Even if it does have a Catholic name, people don’t know what that means.”

Archbishop Joseph Kurtz of Louisville, Ky., the newly elected president of the bishops conference, has called the lawsuit “baseless” and “misguided.” “A robust Catholic presence in health care helps build a society where medical providers show a fierce devotion to the life and health of each patient, including those most marginalized and in need,” he said.

The authors of the new report, titled “Miscarriage of Medicine: The Growth of Catholic Hospitals and the Threat to Reproductive Health Care,” assert that the risk to patients is especially great in areas where a Catholic hospital is the sole provider for an entire region.

The report also looks at how much money Catholic hospitals take in from Medicare and Medicaid—a total of $115 billion in gross patient revenues in 2011 — and urges the federal government to enforce laws that protect patients under those programs. (Back in 1999, when MergerWatch issued its first report on the role of religion in health care, the total billed by all religious hospitals — not just Catholic-sponsored ones—was $41 billion.)

One of the more surprising findings is the slightly below-average amount of charity care provided by Catholic acute-care facilities. The numbers are based on Medicare Cost Reports, financial and utilization data filed annually by every hospital, the report said.

ProPublica requested comment from the Catholic Health Association, and we’ll post it if it comes.

But the shift, if true, is a big change from the past, when Catholic hospitals were founded by nuns and brothers to minister to the poor, the report says.

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Source: MergerWatch

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Katie Schlenker

When palliative care is the best care

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By Anna Gorman
KHN Staff Writer

This KHN story was produced in collaboration with 

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Palliative care doctor Katie Schlenker tries to help Leanne Henry with her pain, weeks after Henry underwent a liver transplant at the University of Washington Medical Center in Seattle (Photo by Anna Gorman/KHN).

SEATTLE — Leanne Henry winced. Five weeks had passed since her liver transplant, and she hurt just lying still.

Katie Schlenker softly touched her leg. “Are you still in a lot of pain?”

Henry, a petite mother of five who has been hospitalized since early September, closed her eyes and nodded. “It’s not like an ache,” she told her doctor. “It’s pain that just won’t go away.”

Schlenker is a physician unlike most at the University of Washington Medical Center. A palliative care doctor, her role is to comfort her patients instead of cure them, to help them cope with their illnesses rather than to treat them.

When Henry was in intensive care, Schlenker stood beside her patient’s husband and children as the family prayed for recovery. They talked extensively about what the family wanted to do if Henry took a turn for the worse.

After the transplant, Schlenker and her team helped with the pain and made a “success chart” to mark Henry’s daily progress. Last month, they decorated her hospital room for fall.

“Anything I need, they are there,” Henry, 48, said.

Hospitals around the country are increasingly starting palliative care programs, designed to relieve seriously ill patients’ pain, stress and symptoms regardless of how long they have to live.

While some patients are close to death, others are still receiving treatment to extend their days. And as they do, the palliative care team, including doctors, social workers, nurses and chaplains, tries to improve their quality of life.

Palliative care teams help patients with issues not always addressed by medical doctors. They help manage symptoms such as nausea, difficulty sleeping and fatigue, and they coordinate with the doctors providing treatment.

They also provide patients and families with emotional and spiritual support, helping them understand the illness and guiding them through tough treatment choices.

More than two-thirds of hospitals with more than 50 beds offer palliative care, up from 25 percent in 2000, according to the Center to Advance Palliative Care at Mount Sinai School of Medicine. Washington is a leader in the field; more than 80 percent of hospitals have such programs.  The field is recognized as a subspecialty, and there are fellowships, journals and research centers devoted to the topic.

The increase in popularity is in part due to the growing number of people with chronic illness who may not be ready for hospice. Medicare only pays for hospice benefits if patients have six months or less to live and agree to forgo treatment that prolongs life.

“You shouldn’t be days or weeks from death to have your symptoms managed and pain taken care of,” said R. Sean Morrison, director of the National Palliative Care Research Center.

But some doctors are resistant to palliative care because they believe it pushes patients away from medical treatment that could help them fight their illnesses.

Even the idea of patients planning ahead and making decisions about their care has caused controversy. A provision that would have paid doctors for having discussions about living wills with their patients was taken out of the Affordable Care Act after conservatives raised concerns over “death panels.”  An Oregon congressman is trying to revive that discussion with a similar proposal.

Regardless of what happens with the legislation, experts said palliative care programs will continue to grow as baby boomers age and as hospitals look for ways to reduce costs and increase value under the nation’s new health care law.

Studies show that palliative care reduces health care spending by avoiding unnecessary treatment and getting patients out of the hospital faster. Researchers have also concluded that the care improves patient satisfaction and lengthens life.

The way forward in medicine isn’t just blind application of technology to treat disease, said Tony Back, a University of Washington professor, an oncologist and an expert in the field. “Fear drives people to think there’s got to be a way to fix this,” he said. “There are better ways to deal with serious illness.”

On a rare sunny afternoon in Seattle, palliative care physician Melissa Bender stepped into the hospital room of Susanne Becklund, who was wearing a patterned red scarf around her head.

Becklund was diagnosed with leukemia in July and had only been out of the hospital for a few days since. She had undergone chemotherapy and bone marrow biopsies. Nothing had worked.

“All in all, it doesn’t sound promising,” Becklund said.

Becklund, 63, said she knew she might not make it until summer but that she didn’t have a big agenda. She just wanted to get out of the hospital and breathe in fresh air every day. She hoped to take a walk alongside a favorite river.

“What gives you strength during hard times?” Bender asked.

Becklund responded that she just puts “one foot in front of the other.” But since finding out that there was little the doctors could do to treat her cancer, that’s gotten a lot harder. “I’m trying to get stronger, but for what?” Becklund asked.

Bender let silence fill the room before speaking again. She promised to help Becklund live the rest of her life as she wanted. “Continuing everything you are on will keep you in and out of the hospital,” she said of Becklund’s medical treatment. “Stopping some of those things will help you get home.”

Patients sometimes refuse to see the palliative care team, worrying that doctors are giving up on them or sending them home to die. But the way Bender sees it, she is listening to what they want and trying to help them get the most out of life.

Henry wants to return to her home on Whidbey Island within a few weeks but knows that may not be realistic. Since entering the hospital for her liver problems, she has had complication after complication.

In early September, Henry was so sick that her organs were shutting down, and she was hooked to a ventilator. Doctors repeatedly told her husband that she wasn’t going to make it. Schlenker and social worker Carol Kummet asked what the family wanted to do.

“I told them that she is a mother of five and that she could struggle through this,” said her husband, Dan Henry. “We didn’t want to give up.”

Finally, on Sept. 24, she got a new liver. But the problems didn’t end there. She has suffered from infections and blood loss and needed several more surgeries. The recent pain sent her to the operating room again. As Henry moved throughout the facility — the operating room, the emergency room, the transplant floor— Schlenker and her team have been familiar faces.

Henry, wearing orange nail polish and a thin coat of lip gloss, said she feels like she can say anything to them.  Most of the time, Henry is motivated to get better, but sometimes she just wants to give up. Schlenker told her she was there to support her, no matter how she felt.

“You’ve had lots of ups and downs,” Schlenker said. “It’s okay to have a bad day and to be frustrated and be angry.”

Jack Brewer, a 61-year-old welder from Alaska, has had his ups and downs too. He was airlifted to Seattle after having a massive heart attack in October. Now, Brewer is connected to an artificial heart, a machine that beats in place of his own. “That is what is keeping him going till he gets a heart transplant,” said his daughter, Amy Snow.

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Jack Brewer, who had a heart attack in October, lies in a hospital bed at the University of Washington Medical Center in Seattle. His children, Amy Snow and Austin Brewer, stand by their father’s side. Snow said the palliative care team makes her father feel more like a person than a patient (Anna Gorman/KHN).

Kummet, the social worker, looked at Snow and her brother, Austin Brewer, and smiled. “That is only one thing that is keeping him going,” she said.

Snow said she had to Google “palliative care” when the team visited. At first, she feared it meant he was even sicker than she thought. Soon, Snow realized they were there to help the family cope with their father’s illness and to help him be more comfortable. The team makes her dad feel more like a person than a patient, she said.

“It’s not because he’s dying,” Snow said. “It’s because he’s in a dire situation.”

Whether patients are dying or living with a serious illness, doctors are notoriously bad about having difficult conversations and about listening to what patients want, said Stu Farber, who oversees the University of Washington’s palliative care program.

On a recent morning, he explained to a group of fourth-year medical students that they would soon be treating very sick patients and needing to talk to them about their prognoses.

The talks won’t be easy, as patients express frustration, sadness and grief.  “We went into medicine to help people,” he said. “We don’t want to make people angry or to make people cry.”

On this day, students role-played those discussions with two actors: a mother and her 32-year-old daughter who was dying of cancer.  The first pair of students began by asking about the woman’s illness, but Farber redirected them to ask about her instead of her disease. He urged them to ask about her goals, hopes and fears.

Nick Vaudreuil, 25, said so much of medical school has focused only on the science so he appreciated learning how to talk to critically ill and dying patients.  “It humanizes the whole process,” he said.

For Leanne and Dan Henry, those conversations and the palliative care group have helped them deal better with the lengthy and difficult hospital stay. While the surgeons focus primarily on the medical care, Schlenker and the palliative care team focus on the emotional and spiritual care, Dan Henry said.

“They have given us hope,” he said, “while everybody else was saying we didn’t have any.”

Contact: agorman@kff.org

This article was produced by Kaiser Health News with support from The SCAN Foundation.

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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