Category Archives: End-of-Life Care

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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Women’s Health – Week 9: Caregiving

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tacuin womenFrom Office of Reseach on Women’s Health

Caring for a loved one, while immensely challenging, can also be a rewarding and positive experience. Caregivers provide many kinds of help, from grocery shopping to helping with daily tasks such as eating and dressing.

Women provide the majority of long-term care in this country. Caregivers act as health care providers,  friends,  companions,  decision-makers,  and advocates,  often while working and caring for their children at the same time.

To be able to take care of others, you must also take care of yourself. Eating right,  staying active, and making sure your own emotional and physical needs are being met are important places to start. Caregivers often have high levels of depression,  anxiety,  and other mental health issues.

You should talk to a counselor,  psychologist,  or other mental health professional right away if the stress affects your daily life or leads you to physically or emotionally harm the person you are caring for.

As a caregiver, you already know that it is important to track financial and medical records. Planning ahead in case of an emergency can make all the difference. The person who you are caring for should give consent in advance for their health care provider or lawyer to talk with you as needed if there are questions about medical care, a bill, or a health insurance claim. Without consent, the caregiver may not be able to get needed information.

Respite care
Respite care is the provision of short-term, temporary relief to you if you are caring for family members who might otherwise require permanent placement in a facility outside the home. It provides you with the break you need, and also ensures that your loved one still receives the attention that he or she needs. Respite care can vary in time from part of a day to several weeks. For more information about respite care: www.ninr.nih.gov.
for more information: www.orwh.nih.gov
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Think all caregivers are unhappy? They’re really not

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A younger man holds an elderly man's handBy Nancy Shute, NPR News

This story comes from our partner ‘s Shots blog.

The stereotype of caring for a family member is that it’s so stressful it harms the caregiver’s health. But that’s not necessarily so.

Studies are conflicted, finding that caregiving can harm or help the caregiver. Here’s one on the plus side: A study finds that people who care for a family member live longer than similar people who aren’t caregiving.

The scientists didn’t ask the caregivers why they might be healthier and presumably happier than similar people who weren’t caring for someone. But the 3,503 people who participated represented a broad swath of the American public and may be a better representation of the caregiving experience overall.

Just 17 percent of the people surveyed said they had high levels of caregiving strain, and the majority put in fewer than 14 hours of care a week.

“The burden of caregiving certainly can be overwhelming and negative to health,” says David Roth, director of the Center on Aging and Health at Johns Hopkins University and lead author of the study, which was published in the American Journal of Epidemiology. “But those are not necessarily the typical experience.”

The study data was originally gathered for a big multiyear study on stroke risk, but the people being cared for in this study had a broad range of health problems. The caregivers themselves were age 64 on average, more likely to be female and either white or African-American.

Family caregivers were 18 percent less likely to die than non-caregivers over six years, the researchers found.

Something must have made life better for the caregivers. But what? To help find out, we called up Leah Eskinazi, director of operations for the Family Caregiver Alliance in San Francisco.

“There are people who find caregiving very rewarding,” Eskinazi told Shots. “They feel really good that they can give back to Mom, for example, because Mom was really there for them when they were growing up. Maybe they weren’t the best kid, but as they’ve aged they can have a more balanced healthier relationship and heal some of those wounds.”

Context is everything, Eskinazi says. Caring for someone with dementia can be more stressful and depressing because the person is facing a long inevitable decline. “You’re caring for someone who can’t voice their preferences,” she says. “You’re making decisions for another person and for yourself, and that can last for a long time. It’s tough.”

But only about 10 percent of family caregivers are tending someone with dementia, other studies have found.

Caring for someone after a stroke, by contrast, can be very positive. “There’s a lot of energy going into helping that person recover,” Eskinazi says.

And in many cases the person being cared for is in a position to be grateful. “To have someone stick by you, or a group of people stick by you, that’s pretty cool,” Eskinazi says. “It gives you an opportunity to say thank you.”

Spouses typically expect to be taking care of their mate in old age, but adult children don’t always prepare for that possibility — or try not to think about it.

People tend to avoid the Family Caregiver Alliance’s booth at health fairs, Eskinazi admits. “People don’t really want to think about it. It’s time, it’s emotion and it takes energy.”

But this latest study points out that caregiving isn’t all a big minus for the caregiver — something to prepare for, perhaps, but a normal, often rewarding part of life.

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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Life and Death in Assisted Living, Part 1 — “The Emerald City”

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“The Emerald City”

By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

joan_boiceJoan Boice needed help. Lots of it. Her physician had tallied the damage: Alzheimer’s disease, high blood pressure, osteoporosis, pain from a compression fracture of the spine. For Joan, an 81-year-old former schoolteacher, simply getting from her couch to the bathroom required the aid of a walker or wheelchair.

The Alzheimer’s, of course, was the worst. The disease had gradually left Joan unable to dress, eat or bathe without assistance. It had destroyed much of the complex cerebral circuitry necessary for forming words. It was stealing her voice.

Joan’s family was forced to do the kind of hard reckoning that so many American families must do these days. It was clear that Joan could no longer live at home. Her husband, Myron, simply didn’t have the stamina to provide the constant care and supervision she needed. And moving in with any of their three children wasn’t an option.

These were the circumstances that eventually led the Boice family to Emeritus at Emerald Hills, a sprawling, three-story assisted living facility off Highway 49 in Auburn, Calif. The handsome 110-bed complex was painted in shades of deep green and cream, reflecting its location on the western fringe of the craggy, coniferous Sierra Nevada mountain range. It was owned by the Emeritus Corp., a Seattle-based chain that was on its way to becoming the nation’s largest assisted living company, with some 500 facilities stretching across 45 states.

Emeritus at Emerald Hills promised state-of-the art care for Joan’s advancing dementia. Specially trained members of the staff would create an individual plan for Joan based on her life history. They would monitor her health, engage her in an array of physically and mentally stimulating activities, and pass out her 11 prescription medications, which included morphine (for pain) and the anti-psychotic drug Seroquel (given in hopes of curbing some of the symptoms of her Alzheimer’s). She would live in the “memory care” unit, a space designed specifically to keep people with Alzheimer’s and other forms of dementia safe.

At Emerald Hills, the setting was more like an apartment complex than a traditional nursing home. It didn’t feel cold or clinical or sterile. Myron could move in as well, renting his own apartment on the other side of the building; after more than 50 years of marriage, the couple could remain together.

Sure, the place was expensive — the couple would be paying $7,125 per month — but it seemed ideal.

During a tour, a salesperson gave Myron and his two sons, Eric and Mark, a brochure. “Just because she’s confused at times,” the brochure reassured them, “doesn’t mean she has to lose her independence.”

Here are a few things the brochure didn’t mention:

Just months earlier, Emeritus supervisors had audited the operations of the memory care unit where Joan would be living. It had been found wanting in almost every important regard. In truth, those “specially trained” staffers hadn’t actually been trained to care for people with Alzheimer’s and other forms of dementia, a violation of California law.

The facility relied on a single nurse to track the health of its scores of residents, and the few licensed medical professionals who worked there tended not to last long. During the three years prior to Joan’s arrival, Emerald Hills had cycled through three nurses and was now employing its fourth. At least one of those nurses was alarmed by what she saw, telling top Emeritus executives — in writing — that Emerald Hills suffered from “a huge shortage of staff” and was mired in “total dysfunction.”

During some stretches, the facility went months without a full-time nurse on the payroll.

The paucity of workers led to neglect, according to a nurse who oversaw the facility before resigning in disgust. Calls for help went unanswered. Residents suffering from incontinence were left soaking in their own urine. One woman, addled by dementia, was allowed to urinate in the same spot in the hallway of the memory care wing over and over and over.

The brochure also made no mention of the company’s problems at its other facilities. State inspectors for years had cited Emeritus facilities across California, faulting them forfailing to employ enough staff members oradequately train them, as well as for other basic shortcomings.

Watch Life and Death in Assisted Living Preview on PBS. See more from FRONTLINE.

Emeritus officials have described any shortcomings as isolated, and insist that any problems that arise are promptly addressed. They cite the company’s growing popularity as evidence of consumer satisfaction. They say that 90 percent of people who take up residence in assisted living facilities across the country report being pleased with the experience.

Certainly, the Boice family, unaware of the true troubles at Emerald Hills, was set to be reassured.

“We were all impressed,” recalled Eric Boice, Joan’s son. “The first impression we had was very positive.”

And so on Sept. 12, 2008, Joan Boice moved into Room 101 at Emerald Hills. She would be sharing the room with another elderly woman. After a succession of tough years, it was a day of great optimism.

Measuring the dimensions of his mother’s new apartment, Eric Boice sought to recreate the feel of her bedroom back home. He arranged the furniture just as it had been. He hung her favorite pictures in the same spots on the wall. On her dresser, he set out her mirror and jewelry box and hairbrush.

Joan, 5-foot-2 and shrinking, had short snow-and-steel hair and wintry gray-blue eyes. Eric looked into those eyes that day at Emerald Hills. He thinks he might have seen a flicker of fear. Or maybe it was just confusion, his mom still uncertain where, exactly, she was.

A Reform Movement Winds Up on Wall Street

The Emeritus Corp., the assisted living corporation now entrusted with Joan’s life, sat atop an exploding industry.

Two decades earlier, Keren Brown Wilson had opened the nation’s first licensed assisted living facility in Canby, Ore., a small town outside of Portland. Wilson was inspired by tragedy: A massive stroke had paralyzed her mother at the age of 55, forcing her into a nursing home, where she was miserable, spending the bulk of her days confined to a hospital bed.

Wilson aimed to create an alternative to nursing homes. She envisioned comfortable, apartment building-style facilities that would allow sick and fragile seniors to maintain as much personal autonomy as possible.

“I wanted a place where people could lock the door,” Wilson explained. “I wanted a place where they could bring their belongings. I wanted a place where they could go to bed when they wanted to. I wanted a place where they could eat what they wanted.”

These “assisted living” facilities would offer housing, meals and care to people who could no longer live on their own but didn’t need intensive, around-the-clock medical attention. The people living in these places would be called “residents” — not patients.

Joan1cIt took Wilson nine years to persuade Oregon legislators to rewrite the state’s laws, a crucial step toward establishing this new type of facility. After that, states across the country began adopting the “Oregon model.”

But what began as a reform movement quickly morphed into a lucrative industry. One of the early entrants was Emeritus, which got into the assisted living business in 1993, opening a single facility in Renton, Wash. The company’s leader, Daniel Baty, had his eyes on something much grander: He was, he declared, aiming to create a nationwide chain of assisted living facilities.

Two years later, Baty took the corporation public, selling shares of Emeritus on the American Stock Exchange, and piling up the cash necessary to vastly enlarge the company’s footprint. Many of Emeritus’s competitors followed the same path.

The company’s rapid growth was, at least in part, a reflection of two significant developments. Americans were living longer, with the number of those in the 65-plus age bracket ballooning further every year. And this growing population of older Americans was willing to spend serious money, often willing to drain their bank accounts completely to preserve some semblance of independence and dignity — in short, something of their former lives.

As the assisted living business flourished, the federal government, which oversees nursing homes, left the regulation of the new industry to the states, which were often unprepared for this torrent of expansion and development. Many states didn’t develop comprehensive regulations for assisted living, choosing instead to simply tweak existing laws governing boarding homes.

In this suddenly booming, but haphazardly regulated industry, no company expanded more aggressively than Emeritus. By 2006, it was operating more than 200 facilities in 35 states. The corporation’s strategy included buying up smaller chains, many of them distressed and financially troubled, with plans to turn them around.

Wall Street liked the model. Market analysts touted the virtues of the company and its stock price floated skyward. One of the corporation’s appeals was that its revenues flowed largely from private bank accounts; unlike hospitals or nursing homes, Emeritus wasn’t reliant on payments from the government insurance programs Medicare or Medicaid, whose reimbursement rates can be capped. As the company noted in its 2006 annual report, nearly 90 percent of its revenues came from “private pay residents.”

In filings with the Securities and Exchange Commission and in conference calls with investors, Emeritus highlighted many things: occupancy rates; increasing revenue; a constant stream of complex real estate deals and acquisitions; the favorable demographic trends of an aging America.

“The target market for our services is generally persons 75 years and older who represent the fastest growing segments of the U.S. population,” Emeritus stated in a 2007 report filed with the SEC.

Today, the assisted living industry rivals the scale of the nursing home business, housing nearly three-quarters of a million people in more than 31,000 assisted living facilities, according to the U.S. Department of Health and Human Services.

Keren Brown Wilson, the early and earnest pioneer of assisted living, is happy that ailing seniors across the country now have the chance to spend their final years in assisted living facilities, rather than nursing homes. But in her view, the rise of assisted living corporations — with their pursuit of investment capital and their need to please shareholders — swept in “a whole new wave of people” more focused on “deals and mergers and acquisitions” than caring for the elderly.

She speaks from experience. After her modest start, Wilson went on to lead a company called Assisted Living Concepts, and took it onto the stock market. Wilson left the company in 2001, and it has encountered a raft of regulatory and financial problems over the last decade.

“I still have a lot of fervor,” said Wilson, who now runs a nonprofit foundation and teaches at Portland State University. “I believe passionately in what assisted living can do. And I’ve seen what it can do. But for some of the people, it’s just another job, or another business. It’s not a passion.”

“A Phenomenal Deal”

Joan1aJoan Boice, born Joan Elizabeth Wayne, grew up in Monmouth, Ill. It was a tiny farm belt community, not far from the Iowa border. Her father, a fixture in the local agriculture trade, owned a trio of riverfront grain elevators on the Mississippi and a fleet of barges. As a teenager, she spent her summers trudging through the fields, de-tasseling corn.

In 1952, accompanied by a friend, Joan packed up a car and followed the highway as far west as it would go. Then in her early 20s, she was propelled by little more than the notion that a different life awaited her in California. In a black-and-white snapshot taken shortly after she arrived, Joan is smiling, a luxuriant sweep of dark hair framing her pale face, gray waves curling in the background. It was the first time she’d seen the Pacific.

Joan had been a teacher for two years in Illinois, and she quickly found a job at an elementary school in Hayward, a suburb of San Francisco. In certain regards, her outlook presaged the progressive social movements that were to remake the country during the next two decades. She viewed education as a “great equalizing force” that could help to remake a society far too stratified by class, race and gender.

“She was just free-spirited and confident,” Eric, her son, said.

Joan met Myron Boice through a singles group at a Presbyterian church in Berkeley. On their wedding day, Joan flouted convention by showing up in a blue dress. The Boice children came along fairly quickly: Nancee, then Mark, then Eric.

Myron Boice was a dreamer. A chronic entrepreneur. He sold tools from a van. He made plans to open restaurants. He had one idea after another. Some worked; others didn’t.

Joan’s passion for education never dissipated. Even in her late 60s, she continued to work as a substitute teacher in public schools. After retirement, she began volunteering with a childhood literacy program.

But age eventually tightened its grip, and hints of a mental decline began surfacing around 2005. Eric grew worried when she couldn’t figure out how to turn on her computer twice in the span of a few months. Then she forgot to include a key ingredient while baking a batch of Christmas cookies. The cookies were inedible.

The elderly couple was still living in the San Francisco suburbs, when, in late 2006, a doctor diagnosed Joan with Alzheimer’s. As her mind deteriorated, Myron struggled to meet her needs. The situation was worsened by the fact that none of the children lived nearby. Mark was in Ohio. Nancee was about an hour away in Santa Cruz. And Eric and his wife, Kathleen, were roughly two hours away in the foothills of the Sierra.

“We offered my parents to come and live with us,” Eric recalled. But Myron said no. He and Joan wouldn’t move in with any of the kids. The family patriarch refused to become a burden.

A physician encouraged Joan and Myron to consider assisted living. It made sense. And so Myron sold their home in 2007 and the couple moved into a facility called The Palms, near Sacramento. The move put them approximately 40 minutes away from Eric and Kathleen.

“They were very attentive to every single thing she needed,” Kathleen Boice said of the staff at The Palms. “They actually re-taught her to eat with a fork and a knife.”

Joan1eBy 2008, however, Myron wanted a change. He wanted to be closer to his son and daughter-in-law and grandkids. He wanted different meals, a new environment. Myron began hunting for a new place to live, a search that led to Emeritus at Emerald Hills in Auburn.

Emeritus opened the Emerald Hills complex in 1998. It was, in many ways, a classic Emeritus facility, situated in a middle-class locale that was neither impoverished nor especially affluent. It was a sizable property, capable of housing more than 100 people.

In part because of its appetite for expansion, Emeritus was in the early stages of what proved to be a period of enormous stress. In 2007, the company had made its biggest acquisition to date, buying Summerville Senior Living Inc., a California-based chain with 81 facilities scattered across 13 states.

The purchase — which expanded Emeritus’s size by roughly one-third — helped the company make another major leap, bouncing from the low-profile American Stock Exchange into the big leagues of commerce, the New York Stock Exchange. News of the Summerville deal propelled the company’s stock to a new high. Emeritus was poised to become the nation’s No. 1 assisted living chain.

But the timing for this bold move turned out to be wretched. The real estate market was freezing up, and it would soon collapse, plunging the nation into an epochal recession. For Emeritus, the economic slowdown and then the housing crash posed direct challenges. Its services didn’t come cheap, so many people needed to sell their homes before they could afford to move into the company’s facilities. With the real estate market calcified, Emeritus’s customer pool shrank.

“Our stock price plummeted,” recalled Granger Cobb, Emeritus’s chief executive officer, who joined the company as part of the Summerville deal. The company’s occupancy rates had been trending skywards. Now they went flat.

At Emerald Hills, the economic slowdown that summer was making life tough for Melissa Gratiot, the lead sales agent.

“It was way harder to move residents in,” she remembered.

But there was some good news. She was close to a significant sale, this one to a couple. Gratiot worked the pitch. She talked with the family. She emailed. She gave them a tour of the facility’s memory care unit, called The Emerald City. She told the family she’d received approval from higher ups to offer the family “a phenomenal deal.”

Gratiot closed the sale. On Aug. 29, 2008, Myron and Eric signed the contract, and the family opened its wallet: A $2,500 initial move-in fee; $2,772 for Joan’s first two weeks in Room 101; another $1,660 for Myron.

There had been one oversight, though. No one at Emeritus with any medical training had ever even met Joan, much less determined whether Emerald Hills could safely care for her.

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Life and Death in Assisted Living, Part 2 — “They’re Not Treating Mom Well”

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By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan2aWhen the ambulance crew arrived, about 8:20 p.m., Joan Boice was in the TV lounge, face-down on the carpet. Her head had struck the floor with some velocity; bruises were forming on her forehead and both cheeks. It appeared she’d lost her balance and fallen out of a chair.

But no one at the assisted living facility could say precisely how the accident had occurred. No one knew how long Joan had been splayed out on the floor. She had defecated and urinated on herself.

Worried that Joan might have injured her spine, the emergency medical personnel gently rolled her over and placed her on a back board. They pumped oxygen into her nostrils.

It was Sept. 22, 2008 — just 10 days after Joan had first moved into Emerald Hills.

No Emeritus employees accompanied Joan to the hospital. And even though Joan’s husband, Myron, was living in the facility, the Emeritus workers didn’t immediately alert him that Joan had fallen and hurt herself. Joan, confused, injured, and nearly mute, ended up in the local hospital by herself, surrounded by strangers.

It was supposed to have been a festive night for Joan’s son Eric and his wife, Kathleen, who lived nearby. They were throwing a birthday party for their daughter, then in elementary school. The celebration was interrupted when a doctor called from the hospital with news of Joan’s fall. As Kathleen recalled it, the physician was somewhat baffled — he didn’t understand what Joan was doing in the emergency room without a family member, and he was having trouble deducing the extent of her injuries because she couldn’t communicate.

California law requires assisted living companies to conduct a “pre-admission appraisal” of prospective residents, to ensure they are appropriate candidates for assisted living.

But Emerald Hills took Joan in without performing an appraisal. It wasn’t for lack of time. The Boices had signed the contract to live at Emerald Hills more than two weeks before Joan moved in.

Joan, then, had taken up residence in the memory care unit at Emerald Hills. The unit — referred to as a “neighborhood” by the company — is a collection of abouta dozen small apartments on either side of a central hallway. At each end of the hallway are heavy doors equipped with alarms, which sound when anyone enters or leaves. The alarm system is meant to prevent residents from simply walking off.

On the day Joan moved into Room 101 in the unit, a company nurse named Margaret “Peggy” Stevenson briefly looked her over. The nurse realized that Joan needed to be monitored closely to keep her from falling — she wrote it down in her cursory assessment — but facility records show she didn’t craft any kind of detailed plan for her care and supervision.

Stevenson, asked years later about Joan, said she could recall nothing about her or her stay at Emerald Hills.

Kathleen had immediate suspicions about Joan’s fall. The family, she said, had warned the facility not to leave Joan sitting in a chair without supervision because she was liable to try to stand up, lose her balance, and topple to the floor. Joan had fallen several times during an earlier stay in an assisted living facility near Sacramento, but the staff had developed a specific plan to address the issue.

Despite the warning, Kathleen said that when she visited Emerald Hills during Joan’s first days there she often found her mother-in-law sitting in a chair alone.

The recent track record at Emerald Hills featured a host of falls similar to Joan’s, and ambulances were often called to take the injured off to the hospital. Falls are a particular hazard for the elderly, and assisted living facilities like Emerald Hills are required to report them to state regulators.

Internal company records documented 112 falls at Emerald Hills in 2008. Some residents fell repeatedly.

Consider the case of one Emerald Hills resident, 83-year-old Dorothy “Dottie” Bullock.

On April 5, 2008, an Emeritus employee discovered Bullock “on the floor in a semi-seated position” in the memory care unit, according to a state report. She “was unable to tell” the worker what had happened to her. The incident was described as a fall in state records. Emerald Hills sent her to the hospital.

Joan2bOn April 7, Bullock, back at Emerald Hills, fell again, according to the handwritten log of her personal attendant, who was hired by Bullock’s husband to give her extra help.

On April 8, Bullock, complaining of pain, was hauled by ambulance back to the hospital. Doctors concluded that she’d fractured her pelvis, but soon returned her to Emerald Hills. She fell again on April 12.

Bullock would fall again months later, for the final time.

Emeritus records show Bullock tumbled in front of her apartment and was found on the carpet with her aluminum walker beneath her. Blood spilled from her nose and a “bump” developed on her forehead, according to the company documents. The impact broke a vertebra in Bullock’s neck and crushed her nasal bones and sinus structures, hospital records show. A CT scan revealed possible fractures of both eye-sockets and the base of the skull.

Dottie Bullock died in the emergency room.

While Emeritus recorded the fatality in its internal logs, the company did not report her death to state regulators, a violation of California law. The state requires assisted living facilities to file reports on all deaths, even those believed to be from natural causes, so that it can look into suspicious or troubling incidents.

Emeritus said it lacked information about Bullock’s death and thus could not say why it had occurred.

Bullock’s personal attendant, Julie Covich, says Bullock was not supervised properly.

“I think there was neglect,” said Covich, who usually visited Emerald Hills once or twice a week to help out Bullock. “I would go in there and never see a caregiver.”

“It was hard to find anyone that was running the place,” she said. “It was crazy.”

“Heads on the Beds”

In early 2008, the year Joan Boice entered Emerald Hills, Emeritus rolled out a new business campaign. The company dubbed it the “No Barriers to Sales” effort.

The concept was straightforward: Move as many people as possible into Emeritus facilities. Wall Street was looking closely at the company’s quarterly occupancy numbers and a few percentage points could propel the stock price upward or send it tumbling down.

With the housing market foundering, Emeritus needed to step up its sales efforts.

In case there was any confusion about just how seriously the company took this new campaign, a company vice president sent a blast email to facility directors across California. In the body of the email, the vice president got right to it:“SALES and your commitment to sales is your highest priority right now.” Facility directors, the message concluded, would be “held responsible for census and occupancy growth.”

Emeritus employees across the country realized they were entering a new era.

“There was a different sense of urgency. The tone was different,” said a former Emeritus manager who ran a facility at the time. “The message from above was put as many people as possible in the beds and make as much money as possible. That’s what they said. Verbatim. Honestly.”

According to Lisa Paglia, a regional executive in California at the time, Budgie Amparo, the company’s top official for quality control, was openly critical when a Northern California facility declined to admit someone who did not have a doctor’s evaluation.

Such evaluations, which are designed to keep out seniors with problems that assisted living facilities aren’t equipped to handle, are required under a California law known as Title 22.

But on a conference call with roughly half a dozen California managers, Paglia said, Amparo declared that the Northern California facility should have admitted the resident.

Joan2d“Our priority,” Amparo declared, according to Paglia, “is to get the heads on the beds.”

The issue arose again in October 2008 during a training session for approximately 25 facility directors and salespeople held at an Emeritus property in Tracy, Calif. During the seminar, a company vice president reiterated Amparo’s instruction to disregard California law, according to court records and interviews.

The mandate prompted something of a staff revolt.

At least one facility director spoke out at the meeting: His license to operate the facility was at stake, he said.

An employee who worked at the Tracy facility eventually alerted California regulators. The state dispatched an investigator, and state records show that the investigator met with employees who confirmed that a company official had approved the practice of admitting someone without a doctor’s report. The investigator reviewed a random sample of seven resident files, finding that two people had been moved in illegally, documents show.

Amparo, a nurse whose full title is executive vice president of quality and risk management, denies directing employees to violate the regulation. In a written statement, Emeritus said, “Neither Budgie Amparo nor any of our other officers issued a directive to violate Title 22 or any other law. Emeritus does not condone allowing residents to move in without the proper documents.”

Emeritus eventually fired Paglia, and lawyers for the company have since portrayed her as a poor worker who failed to do her job competently. Along with two other former Emeritus employees, Paglia sued the company alleging wrongful termination, and wound up settling on secret terms.

For assisted living chains such as Emeritus, there is a powerful business incentive to boost occupancy rates and to take in sicker residents, who can be charged more.

Emeritus, for its part, rejects any suggestion that a quest for profits has tainted its admission practices. But in interviews, former Emeritus executives described a corporate culture that often emphasized cash flow above all else. The accounts of the executives, who spoke independently but anonymously, were strikingly consistent.

“It was completely focused on numbers and not human lives,” said one executive, who worked for Emeritus for more than three years and oversaw dozens of facilities in Eastern states.

The company’s emphasis on sales and occupancy rates, the executive said, transformed the workforce into “a group of people who were grasping at every single lever they could pull to drive profitability.”

Emeritus operates a sophisticated, data-driven sales machine. There are occupancy goals for each facility, as well as yearly company-wide goals. The company tracks dozens of data points — including every move-in and move-out of residents — in a vast database. It posts a monthly snapshot of each facility’s sales statistics on an internal website, allowing employees to see which strategies are most successful.

Sales specialists are instructed on how to use psychology to persuade potential customers to sign on. One suggestion: Give the customer “a sense of control and choice by offering two possible options.” A 2009 Emeritus sales manual, which runs 181 pages, encourages sales people to generate publicity by hosting seminars on Alzheimer’s or organizing charity efforts in the event of a natural disaster like a “flood or earthquake.”

Emeritus motivates its workforce with a broad range of financial incentives. There are bonuses for hitting monthly occupancy goals. Bonuses for hitting yearly occupancy goals. Bonuses for boosting overall earnings. And the money doesn’t just go to sales people: The company hands out checks to maintenance workers, nurses, facility directors and other workers.

Nurses play a key role in assisted living, providing much of the hands-on care. But nurses at Emeritus facilities are also expected to be deeply involved in increasing revenue by making sales.

During more than a year of reporting, ProPublica and PBS Frontline spoke to 10 facility directors who said nurses were required to participate in weekly conference calls focusing on little but economics. Those accounts are backed by an internal Emeritus document that lays out the agenda for the weekly calls and that shows an overarching concentration on finances.

Doris Marshall was at the forefront of Emeritus’s efforts to have nurses play the dual roles of caregivers and salespeople. After receiving her nursing license in 1984, Marshall had spent many years tending to patients in the emergency department of a Southern California hospital, and she’d later gone on to help run a nursing school.

But Marshall was intrigued by the assisted living business and in March 2008 she signed on to supervise 10 Emeritus properties scattered across Northern California. Amparo, the company’s head nurse, convinced Marshall to take the job, telling her nurses “had a voice” at Emeritus.

Marshall was to oversee the well-being of roughly 800 elderly people. But her job description went well beyond that: She was to help with “marketing” and “attaining financial goals.” Her job, in the end, actually involved very little nursing.

Instead, she said, she was drawn into Emeritus’s evolving strategies aimed at upping its revenues. The company planned to bring in more seniors with Alzheimer’s and dementia because they could be charged more, she said. Her boss gave her a digital tracking tool showing how much more money Emeritus could make by admitting sicker, frailer residents.

By the fall of 2010 Marshall was worn out and disillusioned. She quit.

Emeritus’s extraordinary drive to put heads in beds — perhaps routine in, say, the hotel industry — has distorted the admissions process at some facilities, records and interviews show. Since 2007, state investigators have cited the company’s facilities more than 30 timesfor housing people who should have been prohibited from dwelling in assisted living facilities.

A 2010 episode at an Emeritus facility in Napa highlighted the perils of improperly admitting people. The facility rented a room to a 57-year-old woman with an eating disorder, depression, bipolar disorder and a history of suicide attempts. The woman, who was distraught over the death of her husband, taped a note to her door saying she wasn’t to be disturbed and committed suicide, overdosing on an amalgam of prescription painkillers.

The state’s investigation into the death was scathing: the woman should never have been allowed to move in; the staff had missed or ignored bulimic episodes and her obvious weight loss; no plan of care was ever developed or implemented despite the resident’s profound psychological problems.

Emeritus, asked to respond to the state’s investigation, said only that the woman had overdosed on drugs she had brought into the facility on her own, and that as a result they could not be faulted in her death.

“She Barely Even Talked to Us”

In the aftermath of her fall in September 2008, Joan returned to Emerald Hills. But the staff, inexperienced and often exhausted, worried about her.

“She couldn’t walk, she couldn’t feed herself, she barely even talked to us, and her health wasn’t that good,” recalled Jenny Hitt, a former medication technician at Emerald Hills.

But if concern was abundant at Emerald Hills, expertise was in short supply.

Alicia Parga ran Joan’s memory care unit. On some weekends, she managed the entire building — not only the wing of residents with dementia, but the rest of the three-story assisted living facility, one that could hold a total of more than 100 residents.

After Parga started on the job, it took Emeritus roughly 18 months to give her any training on Alzheimer’s and dementia. The state regulations were hardly substantial: Someone such as Parga was obligated to get six hours of training during her first four weeks on the job. But even that requirement wasn’t met.

Emeritus has insisted that Emerald Hills had properly trained personnel to care for Joan and others, and they described Parga as a woman deeply invested in tending to the residents.

But Parga, who had barely earned a high school degree, wasn’t even familiar with the seven stages of dementia. Though she was responsible for the well-being of 15 or more seriously impaired people, as well as the supervision of employees, Parga was paid less than $30,000 per year.

Catherine Hawes, a health care researcher at Texas A&M University, conducted the first national study of assisted living facilities. In her view, training is absolutely crucial. A well-educated employee can “interpret non-verbal cues” from people like Joan, intercept seniors before they wander away from the building, or keep residents from eating or drinking poisonous substances.

“You can do great care,” she said. “You just — you’ve got to know how.”

Other than the Emeritus employees working in the memory care unit at Emerald Hills, only one person saw Joan enough to know what kind of daily care she was getting: Her husband, Myron.

He was worried. And he did his best to sum up his concerns to his son Eric:

“They’re not treating Mom well.”

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Life and Death in Assisted Living, Part 3 – “A Sinking Ship”

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By A.C. THOMPSON, ProPublica and JONATHAN JONES in collaboration with 

A special to ProPublica

Joan3eOn Sept. 30, 2008, an employee at the Emerald Hills assisted living facility in Auburn, Calif., made an entry in a company computer log:“pressure ulcer/wound.”

Joan, who had spent just 19 days in the facility, had developed the wound on her foot. The fall eight days earlier had hospitalized her and left her with bruises and an abrasion on her right temple. This, though, could be much, much worse.

Pressure ulcers — also known as bed sores — can form when a person loses the ability to move about freely. Lying in bed or sitting in a chair for long stretches of time diminishes the blood flow to the skin, causing it to break down and die. A hole grows. If bacteria creep into the wound, the bugs can devour flesh or invade the blood and bones. Pressure ulcers can turn fatal, particularly in older people.

Because of the lethal potential of pressure ulcers, the federal government monitors them closely in the nursing home business. In the eyes of experts, the sores are often an indicator of poor care. Attentive caregivers can prevent many pressure sores by making sure that people don’t spend too much time in the same position.

“We know that most bed sores are avoidable,” said Kathryn Locatell, a forensic geriatrician who investigates allegations of elder abuse for California Department of Justice. “That is the consensus of experts in the field.”

Physicians grade the ulcers on a scale ranging from Stage 1 to Stage 4, with Stage 4 being the most serious. In California, assisted living facilities are allowed to house people with Stage 1 and 2 sores, but only if the resident receives medical treatment from a “skilled professional.” The law bars facilities from renting rooms to people with more severe pressure ulcers.

The Emerald Hills worker who wrote up Joan’s pressure ulcer on Sept. 30 understood its significance. The employee noted that a “skilled professional”would be treating the wound.

Emerald Hills was supposed to contact Joan’s doctor when she developed the ulcer. But nobody from Emerald Hills called a doctor. No nurse came to salve Joan’s wound. And nobody told Joan’s relatives — her husband, Myron, who lived in the same facility, or her son who lived nearby — about the development.

Joan’s short, painful stay at Emerald Hills seemed to be accelerating her decline.

Things had been different at the first assisted living facility Joan had lived at, a place called The Palms near Sacramento. There she’d enjoyed a constant stream of activities. “She was doing things every day,” remembered Eric Boice, her son. There were storytelling sessions, games of wheelchair bowling, arts and crafts. Once Joan had smeared finger paint on her palm and pressed it to a piece of paper, creating a keepsake for her son.

Adequate staff at The Palms was central to the family’s satisfaction with Joan’s stay. Promises that staff would keep Joan active and engaged — central ambitions in dementia care — were kept. And the perils of prolonged inactivity, like mental decline and dangerous sores, were avoided.

By comparison, the unit at Emerald Hills where Joan lived seemed to the family to be poorly staffed and thus static. Staff rarely turned up to organize activities. What few staffers were available managed only to bring Joan down to the TV lounge, where she sat, unengaged. Myron and other family members visited frequently, but otherwise she was marooned.

Joan3aMelissa Gratiot, the Emeritus salesperson who had convinced the Boices to come to Emerald Hills, had given the family a brochure during her sales pitch. The facility’s “entire staff” would strive to produce “meaningful interactions and activities” for Joan.

But Gratiot had come to doubt her own marketing pitch, and a lack of staff was part of what colored her regret. She saw few activities going on in the memory care unit and rarely saw her colleagues working to protect Joan from long stays in her wheelchair or bed.

“When I would see Joan,” Gratiot said, “she’d be in the TV room, sitting in a chair.”

“State Visits, Fines, Resident Upheaval”

Just months before Joan arrived at Emerald Hills, Mary Kasuba, a nurse there, told senior management at Emeritus that things needed to change. She took her concerns directly to the top bosses, the executives in Seattle who ran the assisted living empire from a gleaming glass office cube on the Puget Sound.

In late 2007, Kasuba wrote a five-page letter and sent it via certified mail to the 10 highest-ranking figures in the company. In the letter, Kasuba warned of “total dysfunction” at Emerald Hills because of “the way the corporation mandates this building to be run.”

She pleaded for the bare essentials any assisted living facility needed to operate safely: a key one being an adequate workforce.

Alarms bells had been ringing in Kasuba’s head nonstop during her short tenure at Emerald Hills. The first was triggered when she had to cover the overnight shift with another employee. There were roughly 80 seniors living at Emerald Hills at the time.

“There were residents that could not necessarily get up and walk to the bathroom on their own,” Kasuba said in an interview.

Some of them, she immediately noticed, needed the help of two people — all the workers she had on duty — to get out of bed and shuffle to the toilet. If any sort of emergency had forced Kasuba to evacuate the building, it would have been slow-motion chaos.

Typically, Kasuba would grab a nap as dawn broke and be back at Emerald Hills by 10 a.m. The scene wasn’t much better on the day shift. She came to feel the company was exploiting its customers.

In her letter to Emeritus officials, she wrote, “Since I came to work with Emerald Hills, there has not been enough staff to cover any part of the day-to-day staffing needs.”

“The med room is a sinking ship with no ballast compartments to keep it afloat.”
MARY KASUBA, FORMER NURSE AT EMERALD HILLS, IN A LETTER TO EMERITUS EXECUTIVES

Kasuba’s biggest worry was the medication room. The medication technicians, called “med techs” in the industry, were responsible for passing out a mountain of pills each shift. Med techs aren’t nurses or even certified nursing assistants. Typically, they have no formal medical education. At Emerald Hills at that time they made approximately $8 to $10 an hour.

One medication technician, Kasuba wrote, “was placed in the med room with maybe a day’s training. She worked in the med room until her stress level became such that she stepped down.”

Recordkeeping throughout the facility was haphazard at best. Documents were missing or misfiled. One resident’s chart, according to the nurse, contained a doctor’s evaluation that had been filled out and signed by a family member — not an MD.

Joan3bAgain, Kasuba didn’t mince words, calling the medication operation “a sinking ship with no ballast compartments to keep it afloat.”

Kasuba ended her letter to the company’s executives with an ultimatum: Let her make major changes at Emerald Hills or she was out.

“Corporate can hire someone else and the cycle of dysfunction will begin again,”she wrote. “State visits, fines, resident upheaval, staff turnover.”

Emeritus replaced Kasuba. The company says it dealt with the concerns she raised about Emerald Hills. Many of those who remained at Emerald Hills tell a different story.

A couple of years later, Susan Rotella got a taste of the same problems, but on a much grander scale. In November 2009, Emeritus tapped Rotella, who had made her career in assisted living, to manage the company’s California division.

It was a big job. Emeritus agreed to pay her $210,000 per year, plus bonuses and stock options. She’d be part of a three-person executive team overseeing 45 facilities.

Rotella testified under oath that as she traveled around the state meeting Emeritus employees she heard one thing over and over: The facilities needed more staff.

The division, however, wasn’t posting the kind of financial numbers Emeritus wanted to see.

“All eyes were on California because we were keeping the stock price down,” she said. “As California went, so went Emeritus.”

“He turned to me and with a big smile on his face said, ‘Aah, so you’re the one who’s going to run the shithole.’”
SUSAN ROTELLA, FORMER EMERITUS VICE PRESIDENT IN CHARGE OF OPERATIONS IN CALIFORNIA, TESTIFYING TO WHAT COMPANY FOUNDER DANIEL BATY SAID TO HER AFTER SHE TOOK THE JOB.

One man didn’t bother to sugarcoat his feelings about the California division, Rotella said. As she tells it, shortly after signing on with Emeritus, she was welcomed aboard by company founder Daniel Baty.

Baty, she recalled, said, “Ah, so you’re the one who is going to run the shithole.”

He denies making the statement.

Rotella’s superiors directed her to slash labor costs by 10 percent across the board, she said. Facility directors “were constantly being told to cut labor expense, cut labor, cut labor, cut labor,” she added.

Emeritus said Rotella’s claims were false. “Unfortunately, it is another accusation without any documentation, evidence, or even another person present to verify the conversation. Emeritus would not enact across-the-board labor cuts at the expense of our residents’ care needs,” the company said in a statement.

The assisted living industry is overseen in a very different manner from its closest cousin, the nursing home business. Nursing homes are governed by a complex grid of federal and state regulations.

The U.S. Centers for Medicare & Medicaid Services collect a vast array of data from nursing homes — drug prescribing patterns, staffing levels, patients who’ve had falls, etc. — and make much of it available to the public through a website called Nursing Home Compare.

And an array of information on fines and inspections can be found on the easier-to-use website Nursing Home Inspect. States set minimum staffing requirements for nursing homes.

The early advocates of the assisted living movement chafed at many of these regulatory dictates. They wanted flexibility, the ability to innovate. They wanted to create spaces that were more home, less hospital. Today, two decades on, there are still no federal standards and leaders of this growing business sector continue to push back against anything more than modest government oversight.

Their success at staving off uniform regulation from state to state means Emeritus’s hundreds of facilities operate under wildly varying regulations and offer different services. From Miami to Dallas to Des Moines, there isn’t even an agreed-upon definition of assisted living.

“We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community,” said Rick Grimes, president of the Assisted Living Federation of America, a trade group.

The dearth of hard and fast rules gives executives and managers at assisted living companies wide latitude in deciding how many workers should be clocking in on a given shift. Many states require assisted living facilities to keep “sufficient” staff on duty at all times, but don’t define what that means.

The increasing frailty of the population in assisted living makes adequate staffing critical to quality of care, said Catherine Hawes, a Texas A&M professor and an expert on the assisted living industry. According to a 2010 national survey, more than 50 percent of assisted living residents need help dressing and bathing and 42 percent have some form of dementia.

Publicly traded companies like Emeritus are under substantial pressure to hit their financial goals — each quarterly performance is scrutinized and failing to meet expectations can damage the company’s value.

We say in this business if you’ve seen one assisted living community, you’ve seen one assisted living community.”
RICK GRIMES, PRESIDENT OF THE ASSISTED LIVING FEDERATION OF AMERICA.

To hit their goals, then, Emeritus tightly manages its workforce. “Tightly manages” often means reducing staff, slashing wages and curtailing benefits.

Joan3cChief executive Granger Cobb addressed the issue with investors and market analysts as recently as last year.

“We’re feeling good about the cost structure,” he said. “I think we’ve got a very good control on the — our biggest expense, which is labor. We’re managing it very closely.”

Emeritus had just cut its overhead by 8.2 percent, largely by cutting pay and benefits.

The company asserts that all of its facilities are adequately staffed, and that it would never compromise care by irresponsibly reducing staff.

One former Emeritus executive, who supervised nurses in multiple states for a period of years, thought the company kept its staffing levels dangerously low as a matter of policy.

“Is that unique to Emeritus? I would say it’s ubiquitous to the entire assisted living industry,” said the executive. “We need to take a huge step back and look at this whole industry.”

Lack of proper supervision at Emeritus facilities appears to have played a central role in several cases in which residents suffered avoidable and sometimes catastrophic harm.

  • On Christmas Day 2004, Mabel Austin froze to death in front of an Emeritus facility in Texas. The lone staffer on duty in the memory care unit didn’t realize that Austin, 91 years old and suffering from Alzheimer’s, had walked out of the building. Emeritus would not comment on this case.
  • It took about 12 hours for staffers at an Emeritus facility in Iowa to call an ambulance after 84-year-old Paulyne Stevens took a fall in her bedroom. An employee at the facility put Stevens back in her bed, but did not contact any medical professionals. When doctors finally examined Stevens they found she had six broken ribs and a deflated lung. Investigators found workers at the facility didn’t have legally required training. Emeritus admits the incident was mishandled, and has settled a lawsuit with the family.
  • June Hassler, 86, died in a locked bathroom at an Emeritus facility in Pennsylvania. It took employees 36 hours to notice. The director of the facility said the staff thought Hassler was visiting family. Two years earlier, 84-year-old Eleanor Hodges died in the same facility after being attacked by a male resident with a history of aggressive behavior. The state found that Emeritus had failed “to provide proper supervision” of the man. Emeritus told the state it would act to correct the problems that led to Hodges’s death. The families of both women have sued Emeritus.

Emeritus portrays incidents such as these as isolated events and says state authorities are citing the company less and less frequently for violations. “If you look at our regulatory history versus others in the industry we probably fare pretty well,” Cobb said.

There are no national statistics on regulatory violations in assisted living. But ProPublica and Frontline obtained and analyzed data from California, the state with the most assisted living facilities.

The data – compiled by the state ombudsman program, which investigates allegations of abuse and misconduct – shows that between 2010 and 2012, Emeritus had more verified complaints per bed than any of its major competitors.

In two of those years, the company had more substantiated neglect complaints than the other big chains, again on a per bed basis.

Some companies have devised their own systems for calculating how many people should be on duty on any given shift. Though Emeritus collects and parses a vast array of data, much of it focused on sales and profitability, it has chosen not to create a staffing ratio or formula.

This surprised Rotella, the California executive. She had previously worked at another major chain called Sunrise Senior Living, which had used a formula based on the health needs of each resident.

Rotella said she brought the issue up at a meeting with the man in charge of quality control for the entire Emeritus empire, a nurse named Budgie Amparo.

“He stood up and he was quite agitated. And he said, ‘We will never have staffing ratios at Emeritus,’” Rotella recalled. Amparo said that if somebody got hurt or killed in an Emeritus facility, a written ratio or formula could be a liability, according to Rotella. If it turned out the company wasn’t following its own staffing protocol, the plaintiff lawyers would jump all over them.

“I don’t remember that,” Amparo said. In a statement, Emeritus said “we do not have a staffing formula” because such a formula “would not serve our residents’ best interests.”

Emeritus ousted Rotella shortly after her conversation with Amparo. It was March 2010 and she had been on the job for three months. Today she works as a consultant to assisted living firms and is suing Emeritus for wrongful termination. Company leaders, Rotella said, viewed her as a “troublemaker.”

When Joan Boice took up residence at Emerald Hills in the autumn of 2008, the lack of staff was evident.

The facility didn’t assign any workers to the memory care unit on five nights, according to company time sheets.

Emeritus says the employees filled every shift in the memory care unit; they just didn’t keep accurate records of their labor.

Workers in the building felt overwhelmed and bitter. As discontent mounted, the facility director ordered employees not to share their complaints with the public.

“They do not need to know you are tired,” the director wrote in a memo. “They are NOT to hear we are short staffed.”

Then Emeritus decided to shrink the payroll even further. The facility reduced the number of med techs. That meant there would only be one such employee on duty during the facility’s busiest shifts.

Jenny Hitt was one of the med techs affected by the downsizing. Hitt had to keep track of “thousands” of pills coming into the building from a host of different pharmacies. Some residents were taking “15 different prescriptions” and needed to receive pills up to six times per day.

Hitt, who didn’t complete high school and had no medical education, said she was so busy that she sometimes had to “run down the hallways” to get all of her rounds done.

The company, she said, often assigned her to double shifts and once kept her on duty for 24 hours straight.

After Hitt made multiple calls to the company’s “Ethics First” hotline — a supposedly anonymous in-house reporting tool — Emeritus fired her. Her boss told her she had made a medication mistake. She says she was fired because she was calling attention to the building’s failings.

Out of a job, Hitt said she felt only relief. She was weary of worrying that she might kill someone.

Language Had Left Her

In Room 101, Joan’s room, the ulcer on her foot worsened. One day slid into the next. An Emeritus employee faxed a message to Joan’s physician: Joan “seems to be experiencing more frequent and intense pain…She has trouble putting weight on her right foot…Please advise.”

It was Oct. 14 — a full two weeks after the Emeritus worker had first noted the wound in her records.

The physician promptly faxed back instructions: Bring her in for X-rays of her right foot and ankle. Joan’s family was responsible for taking her to appointments with her doctor, but nobody at Emerald Hills told the family about the doctor’s order.

It would be three more weeks before the facility finally informed the Boice family about Joan’s damaged foot. An Emeritus worker phoned Kathleen Boice, Joan’s daughter-in-law, who lived nearby, on Nov. 3. Blood, the employee said, was seeping through Joan’s sock.

Eric Boice took his mother to the doctor on Nov. 4. The doctor’s notes show that the physician thought the wound might have been an ulcerated bunion; the physician, Tayyiba Awan, wondered whether Joan had been lying on her side for long periods of time. The wound had scabbed over and seemed to be healing. Awan did not examine the rest of Joan’s body for sores.

But Joan had other issues, the doctor noted. She’d lost much of her ability to move the right side of her body. The doctor wondered whether she had suffered a series of minor strokes. And so she ordered physical therapists to visit Joan at Emerald Hills to try and improve her mobility.

Back at Emerald Hills, Myron came to Joan’s room frequently, often bringing snacks. Eric Boice would visit his mother one day; the next, Kathleen would visit.They divided the labor, and the heartache.

Over the weeks, Kathleen came to think something was “weird.” But she couldn’t figure out what was going on with Joan. And Joan couldn’t say what was wrong. Language had left her.

“You know, most of the time she was in a bed. Blanket sheets up on her,” Eric recalled. “You know, I sat with my mom, I held her hand and I spoke to her.”

He told her what the grandkids were doing. He’d inform her if his son had played a baseball game the day before.

Disease had transformed his mother. It had spun their roles around. But in Room 101, Eric couldn’t always bring himself to treat his mother like a child. He just never felt comfortable asking her to undress so he could examine her.

If Eric had seen her skin he might have understood what was going on. There wasn’t just a single wound. The pressure ulcers were marching across her body.

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Seven questions to ask when searching for assisted living

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And younger man's hand holds an elderly man's handJason M. Breslow, FRONTLINE

Finding reliable data on assisted living isn’t easy. Federal and state statistics can be hard to come by, and it’s often simpler to search for restaurant reviews on Yelp than it is to locate ratings and reviews for a local assisted living facility.

So where do consumers begin if they’re considering sending a loved one to assisted living?

We put that question to several experts. Here is what they had to say:

1. What Are Your Needs?

Assisted living isn’t for everyone, so it’s important to understand what level of care you need and how that may change with age. Experts say that is especially true when it comes to seniors with dementia.

Consider this 2009 study led by researchers at Johns Hopkins University: It found that 46 percent of assisted living residents suffered from at least three chronic conditions, yet only 54.5 percent of facilities surveyed in the study had a registered nurse or a licensed practical nurse on staff.

As the survey authors note, “Some residents with multiple, complex medical conditions present a challenge that some [assisted living facilities] may not be prepared to manage.”

Assisted living facilities can have limited medical staffs — no doctors and often no nurses — so while many people may shudder at the thought of a nursing home, for some seniors, it may be the better option.

“So many people have heard their mother say, ‘Promise me you’ll never send me to a nursing home.’ And a lot of people make a mistake in choosing assisted living because it looks nice rather than what the person really needs,” says Catherine Hawes, director of the Program on Aging and Long-Term Care Policy at Texas A&M University.

2. Have You Visited?

If you have settled on assisted living, it’s important to visit prospective facilities multiple times. Experts recommend visiting at different times of the day — meal times are a good place to start.

It’s not enough to just tour the building with the director, they say. Instead, take time to talk to residents and staff for a sense of the facility’s culture and environment. Ask about available services and about what staffing is like throughout the day and at night.

It doesn’t hurt to inquire about turnover either, as that can be a good indicator of how reliable services will be, as well as how well the staff understands residents’ needs.

For residents with dementia, it’s also important to understand how the facility manages their care and safety. For example, what kind of programming is available? Are the doors locked at night for residents who wander?

Checklists for visiting an assisted living facility are available from several organizations, including the AARP, the Alzheimer’s AssociationCalifornia Advocates for Nursing Home Reform and the Assisted Living Consumer Alliance, among others.

3. For-Profit or Non-Profit?

It’s also important to consider whether the facility is a for-profit, or not-for-profit institution, as that may influence how resources are allocated for care.

About 82 percent of residential care facilities are private, for-profit facilities, CDC data shows, with about four in 10 belonging to a national chain.

Such for-profit chains, says Hawes, often have “requirements for a return on revenue that mean that they’re always pressing for higher occupancy and for constraining variable costs, and the variable costs are staffing and food, and to some degree, activities.”

From 2006 to 2011, for example, profit margins at privately owned assisted living facilities went from 3.5 percent to 6.4 percent, according to research from Sageworks, a financial information company.

Those gains corresponded with drop in payrolls from 45 percent of sales in 2004 to 38 percent in 2012.

That doesn’t necessarily mean that you should dismiss for-profits and focus your search on non-profits only because, as Hawes notes, there are good and bad facilities in each category.

But experts say the funding model can have an influence on another significant factor: cost.

4. What Are the True Costs?

Assisted living can expensive, and because it is not covered by Medicare, for many seniors, the cost can be prohibitive. In 2012, the average monthly base rate in an assisted living facility rose to $3,550, according to a survey by MetLife. In several states, base rates can run as high as $9,000 a month.

The sticker price, however, often won’t account for the fees a facility charges for additional services. Some facilities will charge a resident extra for meal delivery, for example, while others add on fees for services such as transportation to and from the facility, or laundry and housekeeping.

Likewise, fees for bathing assistance, dressing assistance and medication management can add thousands of dollars a month to the base rate.

5. What’s in the Admissions Agreement?

Admissions agreements can be lengthy and complicated, so experts advise taking your time to read them carefully. Occasionally buried in the fine print is language requiring 30 days notice to stop billing for services, even if the person staying there has died, says Patricia McGinnis, executive director of California Advocates for Nursing Home Reform.

Another red flag are so-called negotiated risk agreements. These clauses are often offered as a way for residents to make preferred choices about their care, even if they present some risks.

For many in the industry, they are seen as a way to help seniors preserve a sense of independence. But as McGinnis warns, if something goes wrong, “You have signed away your right to sue.”

Liability waivers, another common part of admissions agreements, can present the same problem.

“To me, that is a sign that the facility may not have either the ability or the commitment to meeting your needs,” says Nina Kohn, a professor of law specializing in elder law at Syracuse University.  ”If you’re confronted with a contract with that kind of liability waiver, I think it’s reasonable to say, ‘I’m going to cross out that provision.’ See how the facility responds.”

If any part of the admissions agreement is unclear, consult with an elder law attorney, suggests Kohn. The American Bar Association also provides a checklist for choosing an assisted living facility.

6. Where is the Facility?

It’s nice to find a residence that’s close to friends and family, but experts caution against letting that be the deciding factor.

“It is really important to have a place that’s easy to visit, but it’s more important to find a facility that’s really good,” says Hawes of Texas A&M. “Don’t choose a facility that’s five minutes closer to you, or 10 minutes closer to you just because of that. Make sure that you’re getting the best facility for what your loved one needs, and be realistic about what they need.”

7. What Does the Ombudsman Say?

Because data on assisted living facilities can be hard to come by, experts recommend contacting the long-term care ombudsmen for your local area. These officials can offer additional checklists or information on any citations against a facility, as well as answer any additional questions you may have.

In terms of citations, Karen Love, president of the Center for Excellence in Assisted Living, says to look out for any medication administration violations.

She also suggests asking “Have they been cited for not having staff trained, if it’s a state requirement, and have they gotten dinged for not having enough staff, again if that is a state requirement?”

The National Long-Term Care Ombudsman Resource Center provides a map on its website with contact information for ombudsmen in all 50 states.

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ER doctor turns to palliative care to help patients cope with pain and death

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Alaska Palliative 300

Dr. Linda Smith meets with patient Dawn Dillard at Anchorage’s Providence hospital. Smith’s specialty is palliative care, she helps patients live with terminal or life-altering illnesses (Photo by Annie Feidt/Alaska Public Media).

By Annie Feidt, Alaska Public Radio

Dr. Linda Smith walks into a room at Providence Alaska Medical Center, ready with a stethoscope and a huge grin.

She teases her patient, Dawn Dillard, saying that her spiky hair recently resembled a “faux hawk.”

Dillard found out she had uterine cancer a year ago. Her oncologist gave her a year to live. The 57-year-old has beaten those odds, but now her kidneys are failing.

After the laughs are over, Smith sits down on the edge of Dillard’s bed, leans in, and starts talking about a surgical procedure to help her kidneys.

Smith is a palliative care doctor, a specialty that is growing rapidly in the U.S. The idea is to help patients cope with a terminal or life-altering illness.

And unlike hospice care, it is not offered only in the final months of life. Smith works on pain management, coordinating care and even does some counseling. Dillard, who is now in chemotherapy again, really appreciates it.

“I can’t even say how much she’s helped me,” Dillard says. “Just little things. You know, showing me things like breathing techniques. Sort of like mediation, just ways to focus on things that are positive and happy rather than focusing on your sickness and how crappy you feel.”

Becoming A Better Listener

Dr. Linda Smith (Photo by Mark Meyer/For NPR).

Dr. Linda Smith (Photo by Mark Meyer/For NPR).

Two years ago, Linda Smith was a very different kind of doctor.

She worked in the emergency room at the busy Anchorage hospital, where the goal was to quickly stabilize a patient and move on.

But two decades into her career, she started to question how she was caring for patients at the very end of their lives.

She remembers putting patients on breathing tubes and hearing family members say things like, “I know Dad didn’t want this, but we’re just not ready to let him go.”

“I started to have a lot of regret about doing things to people that were painful and uncomfortable and were prolonging their suffering,” Smith says. She thought, “if I only had the time to sit down with the family, I probably wouldn’t be doing these things.”

In 2011, Smith enrolled in a one-year palliative care fellowship at Providence. She had a lot to learn. She found out she was a bad listener. And she was abrupt. As an ER doctor, sometimes she was so busy she didn’t even sit down to deliver devastating news.

“I can remember saying to families things like, ‘I’m sorry, there’s nothing more I can do.’ And I realize now that sounds like abandonment to many people when you say you can’t do anything more. And the reality is I may not be able to do anything more to the patient that will make them survive, but there’s a lot more that I can do. I always can do more.”

Treatment Tradeoffs

A lot of what Smith does is talk to people. She doesn’t advocate for or against treatment, but she wants patients and their families to understand their decisions.

If a doctor puts in a breathing tube, for example, that may extend a patient’s life, but they won’t be able to eat or talk. If they die with a tube in, the family will miss hearing their last words.

So now Smith sits down for hard conversations and looks patients and their family members right in the eye. Earlier this year, she was called in to consult with the wife of a patient who was dying.

“When I entered the room,” Smith says, “The wife said to me, ‘I know who you are.’ And I said, ‘Oh. OK.’ And she said, ‘I don’t want to talk with you and I don’t want to like you because you’re here to talk about death and dying, aren’t you?’”

Smith had a short conversation with the woman, and left her a book on difficult end of life choices. She went back to visit her the next day.

“And she said, ‘You know, I so tried not to like you. And what you had to say. And I really realize that we need to have this discussion now, don’t we?’

“And I said, ‘When you’re ready, we’re ready to have that discussion.’ And she said, ‘I’m ready now,’” Smith recalls.

There’s a shortage of doctors who provide palliative care, and the need is growing as baby boomers slide towards old age.

Smith was planning to go back to the emergency room. But interactions like that one persuaded her to stay in palliative care. Now she works more and makes less money. Some days, she wonders if she’s crazy.

But then she gets to visit a patient like Dawn Dillard.

Back in her hospital room, Dillard and Smith talk about having a second procedure. Smith leaves and calls Dillard’s other doctors. They end up agreeing that the second procedure isn’t really necessary after all. So instead of staying another night in the hospital, Dillard is back home by the end of the day.

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

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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