Hidden Stroke Victims: The Young

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Jamie Hancock, 38, at her house in Rocklin, Calif., in June 2016. Six years ago, Hancock suffered a stroke caused by a tear in her artery. (Heidi de Marco/KHN)

ROCKLIN, Calif. — The headaches were excruciating and wouldn’t go away. Her doctor said they were migraines. Then, one morning a few weeks later, Jamie Hancock stood up from the couch and discovered she couldn’t move the right side of her body. When she spoke, her speech was slurred.

At the hospital, doctors told her she was having a stroke. The 32-year-old Hancock, whose children were just 1 and 3, had a sobering epiphany: “My whole life is changed forever.”

Now, six years later, no one would know she is a stroke survivor. A lifelong dancer, she is fit and muscular. She speaks clearly and walks quickly as she shuttles her kids around, runs errands and teaches dance classes.

But the effects — for her and other young stroke victims — linger just below the surface. They are there when she gets mad at her family, when she can’t remember what she needs at the grocery store, when she tires after working for a few hours. The noise and light can be unbearable, forcing her to escape to a dark room.

Some days Hancock tries to be the energetic and sociable working mom she was before the stroke. Then she crashes.

“I sort of forget I have a disability and I think I can do everything anyone else my age can do,” she said. “But I can’t.”

***

Hancock is among a growing number of younger adults who’ve had strokes, which occur when blood flow to the brain is blocked or a vessel in the brain bursts. Because strokes are most often associated with old age, symptoms in younger adults may be overlooked, according to patients, advocates and physicians. And their need for rehabilitation — to return to active lives as parents and employees, for instance — can be underestimated.

“The American public is still very locked on stroke being an [affliction] of the elderly,” said Amy Edmunds, who started a nationwide advocacy and support organization called YoungStroke. “But we are an emerging population … and we really need to be recognized.”

The rate of hospitalization for strokes dropped nationwide by 8 percent between 2000 and 2010 (from 250 to 204 per 100,000), but in those same ten years it increased almost 44 percent for people ages 25 to 44, though from a much smaller base (from 16 to 23 per 100,000), according to research published in May in the Journal of the American Heart Association.

Jamie Hancock, 38, serves lunch to her children Blythe, 9, and Andrew, 7, on June 30, 2016. Hancock said she lost the cognitive ability to do certain tasks which made it difficult to keep her full-time, office job. (Heidi de Marco/KHN)

Hancock serves lunch to her children Blythe, 9, and Andrew, 7. Hancock said she lost the cognitive ability to do certain tasks which made it difficult to keep her full-time, office job. (Heidi de Marco/KHN)

The reasons for the rising prevalence among young people are not clear, but physicians believe that growing risk factors such as hypertension, smoking and obesity contribute. And because younger patients aren’t as aware that they can get strokes, they may not be proactive about controlling those risk factors. Older patients, by contrast, may be more inclined to exercise, eat healthy and take preventive medications.

“Older people are educated and understand they need to take care of themselves and are doing all the things to prevent strokes,” said Lisa Yanase, a stroke neurologist at Providence Health & Services in Oregon. “Young adults … think they are bulletproof. They haven’t had the realization that these things can actually be bad for them.”

Some young people also may have strokes because of drug abuse, and others because of undiagnosed genetic conditions. Hancock’s stroke was caused by a tear in the artery.

Strokes are still more common among older adults though. People ages 18 to 50 years old account for only about 10 percent of the 795,000 strokes that occur each year, according to the American Heart Association.

When their patients are younger, doctors don’t always immediately recognize strokes, said Lucas Ramirez, a physician at Keck Hospital of USC and one of the co-authors of the journal article. Young adults may also be unaware they are having a stroke, jeopardizing their chances of receiving critical, time-sensitive treatment.

Common symptoms, for all ages, include sudden confusion or numbness, slurred speech or severe headache.

Hancock said she had no idea of the warning signs. “I had heard about strokes, but I thought they were for the elderly,” she said.

***

Years had passed since the stroke, and now the Fourth of July was just a few days away. Hancock had promised her children they could buy fireworks. Blythe, 9, and Andrew, 7, selected several sets. But when the clerk handed the bag to the kids, one of Andrew’s wasn’t inside.

“Mom, where’s my rocket man?” he asked.

Hancock told her son to stop. But he asked again — and again.

“Hold on!” she yelled. “I’m trying to focus on paying. You know I have a hard time with focusing.”

Jamie Hancock, 38, and her children Blythe, 9, and Andrew, 7, get ready for a shopping trip to the grocery store on June 30, 2016. Hancock said her stroke made her forgetful, so Blythe has to help her keep track of things around the house. (Heidi de Marco/KHN)

Hancock and her children get ready for a shopping trip to the grocery store in June 2016. Hancock said her stroke made her forgetful, so Blythe has to help her keep track of things around the house. (Heidi de Marco/KHN)

Hancock said she never used to be that way. Now, she has trouble multitasking and gets angry about minor things — her daughter playing music too loud, her son bouncing the ball inside the house. “My family pays the price,” she lamented.

Both children say they’ve learned what to do when their mom gets stressed. Andrew gives her hugs. Blythe helps her take deep breaths. “Sometimes she has really good days and sometimes she has horrible days,” Blythe said.

In addition to the emotional roller coaster, Hancock said she has lost the cognitive ability to do some things, such as handling the family finances.

There is less money to go around, too. Just a few months after the stroke, Hancock returned to her job as an executive assistant at the California Restaurant Association. But she had trouble concentrating, couldn’t manage her time or meet deadlines — and she eventually left. She later got fired from a subsequent job.

“I would get distracted really, really easily,” she said. “I still do.”

Hancock said she spiraled into depression, which therapists later told her was likely a symptom of the stroke. She also became addicted to a painkiller prescribed to treat her headaches. She said it helped her get through the day without feeling exhausted.

With the assistance of Suboxone, a medication to treat opiate addiction, Hancock got sober. But that didn’t stop her mood swings. There were times when she slammed cabinets so hard they fell off their hinges.

Her husband, Ken Hancock, said the stroke and its aftermath nearly tore their family apart. At first, he just felt scared. For a while, his wife couldn’t wash her own hair or pick up their children. When she cooked, one of her hands shook.

A meditation book sits on Jamie Hancock’s living room table. After her stroke, Hancock said she needs to find ways to calm herself down during stressful moments. (Heidi de Marco/KHN)

A meditation book sits on Hancock’s living room table. After her stroke, she said she needs to find ways to calm herself down during stressful moments. (Heidi de Marco/KHN)

He concentrated on getting his wife to appointments and taking care of her and their children. But as she got better physically, he said, she became worse emotionally. The addiction didn’t help, and they argued frequently. “It was a terrible, terrible cycle,” he said. “It took a long time to realize better things were around the corner.”

Now, the family is in a better place, he said. Jamie Hancock sees a therapist and takes medication that is normally used to treat schizophrenia. The volatility has subsided.

Ken Hancock said his wife’s brain injury isn’t visible, but it’s there. “She is still trying to recover, and we are sort of in the same boat with her,” he said.

***

On a June afternoon, Hancock sat in her living room with another young stroke survivor, Jen Ruzicka Lee, an ER nurse and longtime runner who was stricken last year at age 43. Lee returned to nursing part-time in April, but she still stutters and uses a walker.

They laughed and nearly cried as they talked about the impact of different medications, becoming intimate with their husbands again and the daily guilt they felt about the effect of the strokes on their children.

Both women said they had attended a few stroke support groups but couldn’t relate to the older participants. “They would say, ‘You need to nap,” Hancock recounted. “That’s great, but I can’t. I have kids.”

Support groups and rehabilitation programs are typically designed for older adults, said Edmunds, the YoungStroke founder, who was hit by the disease at age 45. Many young stroke survivors have to figure out how to continue raising children and working while dealing with the effects of a stroke.

Blythe Hancock, 9, and Andrew Hancock, 7, at their home in Rocklin, Calif., on June 30, 2016. Jamie Hancock says she feels guilty about the stress her children have to endure due to the side effects of her stroke. (Heidi de Marco/KHN)

Hancock says she feels guilty about the stress her children have to endure due to the side effects of her stroke. (Heidi de Marco/KHN)

“It’s a different landscape for younger adults,” Edmunds said. “We need skills to help us get on with our lives post-stroke, which could conceivably be as long as pre-stroke.”

Hancock and Lee, along with two other women, have become an informal support network. They text often and meet for coffee when they can. This month, they had a family barbecue.

Being a young stroke survivor, Hancock said, “is a whole different ballgame.”

***

Hancock tried to return to dancing soon after her stroke. She couldn’t do a single turn on the floor, and walked out in tears.

“I had to learn to walk again so I don’t know why I thought in my brain I could take an advanced dance class,” she said.

Over time, Hancock regained her strength. She said she doesn’t think her brain will ever be able to handle a 40-hour work week. Teaching dance part-time can even be too tiring some days.

On this evening, however, Hancock energetically stepped into a brightly lit dance studio. She and five young students warmed up to music. Hancock instructed them to run through the dance routine they had practiced the previous night.

“Let’s see what you remember,” she said.

Then she smiled. “Let’s see what I remember, too.”

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

California Court Helps Kids By Healing Parents’ Addictions

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At 10 a.m. on a recent Wednesday, a line of parents pushing strollers filed into a conference room at the Sacramento County Courthouse. They sat at rows of narrow plastic tables, shushing their babies and gazing up at a man in a black robe.

Hearing Officer Jim Teal sounded his gavel. “This is the time and place set for Early Intervention Family Drug Court,” he began, gazing sternly at the rapt faces of parents who sit before him. “Graduation from this court is considered a critical factor in determination that the children of participants will be safe from any further exposure to the danger and destructive impact of parental substance abuse.”

Substance abuse is a factor in up to 80 percent of cases in which a child is removed from home. Recently, the number of children entering the foster care system has surged after years of decline. Roughly 265,000 kids entered foster care last year — the highest number since 2008, according to a recent government report. And there are signs that the opioid epidemic may be to blame.

This KHN story also ran on NPR. It can be republished for free (details).

Parents who receive addiction treatment are much more likely to get their kids back, but four in five parents fail to complete their treatment regimen.

The Early Intervention Family Drug Court in Sacramento aims to change that by helping parents complete treatment before their children enter the foster care system. If they fail, they’ll be sent next door to a formal family drug court, where their children are taken away and given attorneys of their own.

But before that, the parents get this opportunity to enter recovery, through a mix of support, medication-assisted treatment and tough love.

Many parents in the court entered the system after having babies born dependent on opioids or other drugs, while others were reported to Child Protective Services by friends or family. All are at risk of losing custody of their children because of their drug abuse.

Emma, 20, a striking woman with long blond hair, approached Teal’s podium. California Healthline is withholding her last name to protect the child’s privacy.

“Good morning,” said Teal. “Who do you have with you there?”

“My daughter, Cailynn,” Emma answered proudly, bouncing her cooing baby on her hip.

Emma, 20, listens to Hearing Officer Jim Teal as he discusses her case at a session of Early Intervention Family Drug Court in Sacramento, Calif., in March. (Robert Durell for Kaiser Health News)

Emma, 20, listens to Hearing Officer Jim Teal as he discusses her case at a session of Early Intervention Family Drug Court in Sacramento, Calif., in March. (Robert Durell for KHN)

Emma started using drugs when she was just 16. At first it was methamphetamines, but she quickly transitioned to heroin. Then she got pregnant.

When Cailynn was born, the baby tested positive for opioids. Child Protective Services came to the hospital and took her into custody.

“I regret every moment of it. It’s hard. But I’ve gotta keep my head up and keep going,” Emma said. She wanted her daughter back.

Usually, Sacramento County has a three-month wait for people who need substance abuse treatment. But by volunteering to participate in the early intervention court program, Emma was able to get treatment right away.

“So Emma, it says here you’re 63 days compliant,” Teal said from the podium. “And 63 days in the program, so you’ve been good. You’ve been doing what you’re told. Congratulations.”

The other parents in the room burst into applause — this is a major accomplishment. The six-month program is rigorous. In addition to monthly sessions at the court, the parents must attend almost daily group meetings, submit to random drug tests and take parenting classes. Many, like Emma, go to inpatient rehab. Medication-assisted therapy for opioids is also available. And once or twice a week, they get a home visit from their social worker.

A drug court booklet gives parents inspiration to stay sober. They paste a photo of their child on the front and then write about their experiences inside. (Robert Durell for KHN)

A drug court booklet gives parents inspiration to stay sober. They paste a photo of their child on the front and then write about their experiences inside. (Robert Durell for KHN)

Emma attributes much of her success in the program so far to social worker Matthew Takamoto, whom she calls “amazing.”

Takamoto has been a social worker for 20 years and has been part of the early intervention program since it began six years ago. The program, he said, is an important change in way the county handles addiction.

“In the olden days, we were quicker to send them to court,” he said. Their approach was “more blaming the addict verses giving them the tools they need.”

In the afternoon following the court meeting, Takamoto drove to the inpatient residential facility where Emma lives with her daughter. In the back is a grassy yard with a small jungle gym. Several mothers watch their children play. Emma sat in a plastic chair, holding Cailynn in her lap.

Takamoto seemed happy with her progress. “You take these clients from the very beginning where they’re broken and it’s the worst day of their life. And to see them slowly get back up as they have days of clean time, it’s been incredible,” he said.

But he said the hardest part of his job is realizing that not all parents are going to make it through the program — in fact, just one-third of parents end up graduating. “If these parents aren’t successful, it’s the kids [who] pay the price,” he said. “The parents are doing what they want to do, but the kids don’t have a choice.”

Matthew Takamoto has been been a social worker with the early intervention program in Sacramento County from its start and is pleased with its success. The hardest part, he said, is realizing that not every parent will be be able to quit drugs for good. (Robert Durell for KHN)

Matthew Takamoto has been a social worker with the early intervention program in Sacramento County from its start and is pleased with its success. The hardest part, he said, is realizing that not every parent will be able to quit drugs for good. (Robert Durell for KHN)

Just 5 to 10 percent of families in the country who could use family drug courts have access to them, according to Children and Family Futures, an organization that advises and evaluates family drug courts. Sacramento’s program is one of about 350 in the country, though most work with families after their children have entered the foster system.

Sherri Z. Heller, director of Sacramento’s Health and Human Services Department, describes family drug courts as a success story.

“People can overcome addiction if the motivation is strong enough, and this is the most effective motivation I have ever seen,” said Heller. She points to the early intervention court as evidence.

Just 10 percent of kids with families in the program end up being removed from their home, compared to 30 percent of children in families who do not participate. That represents a major savings to the county — about $21,000 a year for every kid who doesn’t have go into the court and foster system, for an annual savings of $7 million.

“The rush that comes with getting high is pretty spectacular. And it’s very hard physically, once the addiction happens, to overcome,” said Heller. “But if there is one thing that matters to people more than the thrill of getting high, it’s the thrill of doing the right thing for your children and keeping your family intact.”

Emma clearly wants to be a good mom. Asked by Teal how she sees her future in six months, Emma said she wanted to have her own apartment with her daughter. “Have a good life. Clean. Don’t have to have drugs no more,” she said.

As The For-Profit World Moves Into An Elder Care Program, Some Worry

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PACE, a program to help keep older people out of nursing homes, allows Vivian Malveaux, 81, to live at home in Denver. InnovAge, which runs her program, converted to a for-profit company last year. (Nick Cote for The New York Times and KHN)

DENVER — Inside a senior center here, nestled along a bustling commercial strip, Vivian Malveaux scans her bingo card for a winning number. Her 81-year-old eyes are warm, lively and occasionally set adrift by the dementia plundering her mind.

Dozens of elderly men and women — some in wheelchairs, others whose hands tremble involuntarily — gather excitedly around the game tables. After bingo, there is more entertainment and activities: Yahtzee, tile-painting, beading.

But this is no linoleum-floored community center reeking of bleach. Instead, it’s one of eight vanguard centers owned by InnovAge, a company based in Denver with ambitious plans. With the support of private equity money, InnovAge aims to aggressively expand a little-known Medicare program that will pay to keep older and disabled Americans out of nursing homes.

Until recently, only nonprofits were allowed to run programs like these. But a year ago, the government flipped the switch, opening the program to for-profit companies as well, ending one of the last remaining holdouts to commercialism in health care. The hope is that the profit motive will expand the services faster.

This KHN story also ran in The New York Times. It can be republished for free (details). logo NYTimes

Hanging over all the promise, though, is the question of whether for-profit companies are well-suited to this line of work, long the province of nonprofit do-gooders. Critics point out that the business of caring for poor and frail people is marred with abuse. Already, new ideas for lowering the cost of the program have started circulating. In Silicon Valley, for example, some eager entrepreneurs are pushing plans that call for a higher reliance on video calls instead of in-person doctor visits.

The business appeal is simple: A baby boom-propelled surge in government health care spending is coming. Medicare enrollment is expected to grow by 30 million people in the next two decades, and many of those people are potential future clients. Adding to the allure are hefty profit margins for programs like these — as high as 15 percent, compared with an average of 2 percent among nursing homes — and geographic monopolies that are all but guaranteed by state Medicaid agencies to ensure the solvency of providers.

The goal of the program, known as PACE, or the Program of All-Inclusive Care for the Elderly, is to help frail, older Americans live longer and more happily in their own homes, by providing comprehensive medical care and intensive social support. It also promises to save Medicare and Medicaid millions of dollars by keeping those people out of nursing homes.

For decades, though, the program has failed to catch on, with only 40,000 people enrolled as of January of this year.

“PACE is still a secret in the minds of the public,” Andy Slavitt, Medicare’s acting administrator, said at the National PACE Association meeting in April. The challenge, he said, was to make PACE “a clear part of the solution.”

Several private equity firms, venture capitalists and Silicon Valley entrepreneurs have jumped into the niche. F-Prime Capital Partners, a former Fidelity Biosciences group, provided seed funding for a PACE-related startup, as have well-regarded angel investors like Amir Dan Rubin, the former Stanford Health Care president, and Michael Zubkoff, a Dartmouth health care economist.

And no company has moved with more tenacity than InnovAge. Last year, the company overcame protests from watchdog groups to convert from a nonprofit organization to a for-profit business in Colorado. And in May, InnovAge received $196 million in backing — the largest investment in a PACE business since the rule change was made — from Welsh, Carson, Anderson & Stowe, a private equity firm with $10 billion in assets under management.

“For years we were pariahs, and no one wanted anything to do with us,” said Julie Reiskin, executive director of the Colorado Cross-Disability Coalition, a nonprofit group that advocates for people with disabilities, many of whom are eligible for PACE.

“Now that there’s money involved,” Reiskin said, “everyone is all interested.”

Even the program’s supporters acknowledge that the movement needs fresh momentum. But they worry that commercial operators will tarnish their image in the same way many for-profits eroded trust in hospice care and nursing homes.

Three decades ago, after Congress authorized Medicare to pay for hospice care, commercial operators displaced the religious and community groups that had championed the movement. As recently as 2014, government inspectors found that for-profit hospice companies cherry-picked patients and stinted on care.

In addition, elderly patients with dementia and chronic ailments have frequently been targets of abuse and neglect at nursing homes, something advocates for the elderly say is correlated with the increased commercialization of that industry.

“I’m not wild about every knucklehead running around trying to do PACE,” said Thomas Scully, former Medicare administrator under President George W. Bush. “I would rather keep it below the radar.”

Not Quite Able

Early last year, Malveaux was drowning. She lived alone in a tidy red-brick home in a leafy Denver neighborhood that she paid for by working shifts at a Samsonite luggage factory, now closed.

Laundry piled up. Bills went unpaid. Doors were left unlocked. Pans sometimes burned on the stove as her memory failed.

“I had lost my mind,” she recalled, sitting on her couch in a pink velour robe. “I couldn’t keep up my house.”

For Americans who find themselves in this situation, the next stop is often a traditional nursing home. Malveaux’s son took her instead to visit an InnovAge day center.

The $9 million building south of downtown Denver is designed to calm people with dementia. It has subdued lighting and winding hallways that encircle the first floor like a running track and discourage “exit-seeking behaviors,” where patients search for ways out of a building.

For the frightened Malveaux, it seemed like paradise: a flower garden, a beauty salon and day trips to casinos and candy factories. And, most importantly, it had a team of doctors, nurses, psychiatrists, dentists, physical therapists, nutritionists, home health aides and social workers whose purpose was to help her live safely in her beloved brick home.

After joining the center in June 2015, Malveaux began seeing a psychiatrist and went on medication for depression. A social worker coached her grandson, Jermaine Malveaux, on how to care for someone with dementia. Three days a week, an InnovAge van picks up Malveaux at home and takes her to the center to share lunch with other older adults and try her luck at bingo and ceramics.

“I make friends easily,” she said with a smile. “And the guys flirt with me.”

Vivian Malveaux, 81, sits down for a meal at the InnovAge center in Denver. (Nick Cote for The New York Times and Kaiser Health News)

Malveaux sits down for a meal at the InnovAge center in Denver. (Nick Cote for The New York Times and KHN)

The InnovAge center, like other PACE facilities, is inspired by Britain’s much-lauded Day Hospitals, outpatient health care facilities that arose in the 1950s that became a hub of daily life for many older people. In the United States, the earliest incarnation of PACE was started in San Francisco in 1971 by a group of Asian and Italian immigrant families seeking alternatives to the American nursing home.

Federal health officials allowed the group, called On Lok — Cantonese for “peaceful, happy abode” — to test what was then a novel and prophetic approach to health care financing. Instead of physicians billing Medicare each time they treated a patient, the government would pay a fixed amount to the center for each member. On Lok would assume the financial risk, similar to an insurance company. In 1990, Medicare officially sanctioned the model.

In exchange for a capped monthly payment from Medicare and Medicaid, PACE staff members arrange and pay for all of a patient’s doctors’ visits, medications, rehabilitation and hospitalizations. At the same time, they are supposed to pay attention to the patient’s daily needs — meals, bathing, housekeeping and transportation to day centers, where older people can ward off isolation and cognitive decline by socializing. (Studies have found that the intensive caretaking reduces costly hospital stays.)

Comparing the cost effectiveness of PACE against nursing homes is difficult, partly because state Medicaid agencies pay a variety of rates. But all the states are required to keep their rates below what they would pay for nursing home care. In Colorado, for example, that amounts to 7 percent less per patient.

On average, Medicare and Medicaid pay PACE providers $76,728 a person a year, about $5,500 less than the average cost of a nursing home. And the money going to PACE covers the all of the person’s health and social needs, unlike nursing home care, which doesn’t include hospitalizations and other expensive medical care.

The flat government payment pushes the organizations to invest in maintaining a patient’s health and safety to avoid big hospital bills. Dentistry — excluded from traditional Medicare coverage — is a crucial focus: Programs invest heavily to fix broken teeth and dentures to avoid costly infections or poor nutrition that can cause cascading health problems.

Providers are also generous with rehabilitation, setting few limits on training sessions that strengthen injured muscles and sturdy patients against falls.

“If you’re neglecting these patients, the odds they’ll call an ambulance and go to the hospital and spend a week there because they’re really sick is pretty high, and that all comes out of the payment,” said Bob Kocher, a former senior health care adviser to President Barack Obama.

Profits are in no way guaranteed, though. The centers still face major financial risk — it just takes a few patients with serious medical conditions to upend the books.

Dan Gray, a PACE financing consultant at Continuum Development Services, said too many trips to the emergency room or an expensive hospital stay can flip fortunes. One organization he advises had $300,000 in hospital medical claims in a month that he refers to as “Black August.”

“I had a nervous twitch,” he said.

High-Tech vs. High-Touch

In January, at the health care industry’s leading matchmaking event, the J.P. Morgan Healthcare Conference in San Francisco, word quickly spread that PACE programs could save states and the federal government up to 20 percent a patient. And suddenly, the program became one of the hottest topics of discussion.

“Every other conversation was, ‘What do you think we should do with PACE?’” said Bill Pomeranz, a managing director at Cain Brothers, who helped finance the nation’s first PACE program in the 1970s.

The message appeared to travel down Highway 101 as well, to the heart of the technology industry. At least eight startups have circulated PACE-related pitches to Silicon Valley venture capital firms, hoping to tap into new capital and create technology-enabled versions of the program.

The interest of the tech industry is so far only nascent. But the possibility that Silicon Valley, notoriously aggressive and extremely deep-pocketed, could play a significant role in PACE underscores the changes that may lie ahead.

Building a center requires medical offices, rehabilitation equipment, food service and fleets of handicapped-accessible vans. On average, it takes up to $12 million just to get it off the ground. That is a lot of money for most nonprofits but relatively little in the technology world. Opening new centers may become less of a hurdle.

The tech industry and nonprofit world are driven by different impulses. The early centers were closely tied to local cultures, making them difficult to replicate. An aversion to aggressive marketing among the center’s leaders didn’t help, either. Tech likes to move as fast as possible.

“PACE reminds me of religious orthodoxy,” said Mr. Pomeranz, who said he had affection for the program. The movement’s leaders come from the world of public health and have a “social work mentality,” he added.

The pitches circulating among investors envision technology-enabled programs that would rely, in part, on video visits and sensors. Some studies have found that telemedicine can help patients better control certain chronic conditions and reduce health care spending. But those technologies are largely untested in geriatric care.

“The entrepreneurs coming into this space all believe there are much lower-cost ways to check on patients every day than driving them all to one building,” said Mr. Kocher, who is now a partner at the venture capital firm Venrock, which invests in health care companies.

These sorts of pitches, while promising, have not been universally welcomed. They’ve even been used as evidence that opening PACE up to for-profit companies might lead to unwanted consequences.

Veteran PACE providers, for example, are skeptical of virtual medicine’s benefits to seniors, especially those with dementia.

Kathy Baron with Munchkin. Baron was left disabled by breast cancer and nerve pain. InnovAge has made it possible for her to stay in her home. “I would rather be dead than go into a nursing home,” she said. (Nick Cote for The New York Times and Kaiser Health News)

Kathy Baron with Munchkin. Baron was left disabled by breast cancer and nerve pain. InnovAge has made it possible for her to stay in her home. “I would rather be dead than go into a nursing home,” she said. (Nick Cote for The New York Times and KHN)

“Socialization goes a long way to improve the health of the participants we serve,” said Kelly Hopkins, president of Trinity Health PACE, a nonprofit health system that operates PACE centers in eight states. “It’s naïve to think you can do it virtually.”

Supporters of the change say the necessary safeguards are in place. The for-profit centers were approved, to little fanfare, after the Department of Health and Human Services submitted the results of a pilot study to Congress in June 2015. The demonstration project, in Pennsylvania, showed no difference in quality of care and costs between nonprofit PACE providers and a for-profit allowed to operate there.

The Centers for Medicare and Medicaid Services has vowed to closely track the performance of all PACE operators by measuring emergency room use, falls and vaccination rates, among other metrics. The National PACE Association, a policy and lobbying group, is also considering peer-reviewed accreditation to help safeguard the program. Oversight is now largely left to state Medicaid agencies.

Maureen Hewitt, InnovAge’s chief executive, said, “At the end of the day, we’re held to the same quality and care standards.”

Dr. Si France, a founder of WelbeHealth, an early-stage company based in Menlo Park, Calif., says startups can use technology to improve clinical communication, help caregivers make treatment decisions and monitor patients at home or in a hospital. But he insists even a high-tech PACE program cannot veer from its origins.

“It’s not a way to get rich or generate outsize returns,” said Dr. France, the former chief executive of GoHealth, a chain of urgent care centers acquired by TPG Capital, a private equity firm. “We think this is an arena for missionaries, not mercenaries.”

Will Money Change Things?

Families enrolled in InnovAge’s PACE program in Denver appeared to be unaware of its conversion into a for-profit enterprise. The company did not announce the change directly to its participants, but notified a patient advisory group.

Kathy Baron, 68, who lives in subsidized senior housing, was left disabled by breast cancer and debilitating nerve pain. Her daughter, Leah van Zelm, struggled to take care of her. So Baron, fearful she would be deemed unfit to stay in her apartment, signed up for InnovAge’s program.

“I would rather be dead than go into a nursing home,” Baron said.

She says InnovAge has been generous with services, echoing interviews with other patients. Each week, an InnovAge housekeeper changes the sheets on her bed, launders her clothes and cleans her apartment, a service provided to those unable to tidy their own homes. The few times her requests for special equipment or services were denied, Baron appealed and won.

But she worries new investors will skimp on what outsiders might view as unwarranted services. The company’s commercials, promising “Life on Your Terms” and voiced by the actress Susan Sarandon, have reinforced those concerns.

It’s a concern echoed by Malveaux’s family. “Anytime you involve money,” said Malveaux’s grandson Jermaine, “there’s always the concern for greed, especially with the elderly.”

At least in the near future, the number of companies getting into PACE programs will be limited. Most states currently cap enrollment in PACE centers. And each state — as Colorado did, opening the window for InnovAge — likely needs to amend its law to allow the for-profit companies. So far, it appears only California has done so.

Yet there is a growing realization among longtime PACE providers that new competition looms.

In a newsletter to the generally placid PACE community, one adviser warned that providers who failed to become bigger would face new entrants who “will find a way to meet the needs of persons in your community.”

Those needs will only grow as the adult children of baby boomers face difficult decisions about how to care for their parents.

In the meantime, for people like Van Zelm, the anxiety that once pervaded her daily life has diminished.

“When she’s stable,” Van Zelm said of her mother, “my daily life stress is reduced.”

KHN’s coverage of late-life and geriatric care is supported by The John A. Hartford Foundation, and its coverage of aging and long-term care issues is supported by The SCAN Foundation.

Government-Protected ‘Monopolies’ Drive Drug Prices Higher, Study Says

The “most important factor” that drives prescription drug prices higher in the United States than anywhere else in the world is the existence of government-protected “monopoly” rights for drug manufacturers, researchers at Harvard Medical School report today.

The researchers reviewed thousands of studies published from January 2005 through July 2016 in an attempt to simplify and explain what has caused America’s drug price crisis and how to solve it. They found that the problem has deep and complicated roots and published their findings in JAMA, the journal of the American Medical Association. The study was funded by the Laura and John Armold Foundation with additional support provided by the Engelberg Foundation.

“I continue to be impressed at what a complex and nuanced problem it is and how there are no easy solutions either,” said lead study author Dr. Aaron Kesselheim, a professor who runs the Program on Regulation, Therapeutics and Law at Harvard Medical School and Brigham and Women’s Hospital. “As I was writing, the enormity of the problem continued to shine through.”

Five key findings in the JAMA review:

  1. Drug manufacturers in the U.S. set their own prices, and that’s not the norm elsewhere in the world.

Countries with national health programs have government entities that either negotiate drug prices or decide not to cover drugs whose prices they deem excessive. No similar negotiating happens in the U.S.

When a Republican-majority Congress created the Medicare drug benefit in 2003, they barred the program that now covers 40 million Americans from negotiating drug prices. Medicaid, on the other hand, must cover all drugs approved by the Food and Drug Administration, regardless of whether a cheaper, equally or more effective drug is available. And private insurers rarely negotiate prices because the third party pharmacy benefits managers that administer prescription drugs, such as Express Scripts and CVS Health, often receive payments from drug companies to shift market share in their favor, according to the study.

  1. We allow “government-protected monopolies” for certain drugs, preventing generics from coming to market to reduce prices.

In an effort to promote innovation, the U.S. has a patent system that allows drug manufacturers to remain the sole manufacturer of drugs they’ve patented for 20 years or more. The FDA also gives drug manufacturers exclusivity for certain products, including those that treat people with rare diseases.

But sometimes, drug companies deploy questionable strategies to maintain their monopolies, the study says. The tactics vary, but they include slightly tweaking the nontherapeutic parts of drugs, such as pill coatings, to game the patent system and paying large “pay for delay” settlements to generics manufacturers who sue them over these patents.

And this is a serious problem, the study concludes, because drug prices decline to 55 percent of their original brand name cost once there are two generics on the market and to 33 percent of original cost with five generics.

  1. The FDA takes a long time to approve generic drugs.

Application backlogs at the FDA have led to delays of three or four years before generic manufacturers can win approval to make drugs not protected by patents, the study says.

  1. Sometimes, state laws and other “well-intentioned” federal policies limit generics’ abilities to keep costs down.

Pharmacists in 26 states are required by law to get patient consent before switching to a generic drug, the authors wrote. This reportedly cost Medicaid $19.8 million dollars in 2006 for just one drug: a statin called simvastatin whose brand name is Zocor. Costs ran higher because pharmacists didn’t get patient consent and Medicaid had to pay for the costlier brand name drug even though a cheaper product was available.

  1. Drug prices aren’t really justified by R&D.

Although drug manufacturers often cite research and development costs when defending high prescription prices, the connection isn’t exactly true, Kesselheim and his team found, citing several studies. Most of the time, scientific research that leads to new drugs is funded by the National Institutes of Health via federal grants. If not, it’s often funded by venture capital. For example, sofosbuvir, a drug that treats hepatitis C, was acquired by Gilead after the original research occurred in academic labs.

“Arguments in defense of maintaining high drug prices to protect the strength of the drug industry misstate its vulnerability,” the authors wrote, adding that companies only spend 10 percent to 20 percent of their revenue on research and development. “The biotechnology and pharmaceutical sectors have for years been among the very best-performing sectors in the U.S. economy.”

Instead, the price tags are based on what the market will bear, they wrote

In general, fixing America’s drug price problems won’t be easy, the study authors concluded. Congressional gridlock and the power of the pharmaceutical lobby make allowing Medicare to negotiate Part D prices an unlikely possibility. And leaving that aside, policymakers must find a way to tighten rules and strengthen oversight surrounding patent protections and exclusivity without chilling innovation, Kesselheim said.

Those not involved in the study said the fact that it was published in JAMA is meaningful because the authors are able to speak directly to doctors.

“I think the most significant thing about this is not necessarily what he’s saying but who he’s saying it to,” said Kenneth Kaitin, who directs the Tufts Center for the Study of Drug Development. “In part, the concern over rising drug prices is something that physicians have been more aware of lately…They’ve still been for the most part on the sidelines of these issues.”

Kaitin said the exception has been the American Society of Clinical Oncology and the physicians at Memorial Sloan Kettering Cancer Center.

Dr. Joshua Sharfstein, the Associate Dean for Public Health Practice and Training at the Johns Hopkins Bloomberg School of Public Health, said Kesselheim’s study provides a “bird’s eye view” of how the U.S. became an outlier when it comes to drug prices, without getting lost in the weeds.

“It also illustrates that there is not a single policy that is going to address the range of challenges that our health system faces around drug pricing,” Sharfstein said.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Geriatric ERs Reduce Stress, Medical Risks For Elderly Patients

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NEW YORK — The Mount Sinai Hospital emergency room looks and sounds like hundreds of others across the country: Doctors rush through packed hallways; machines beep incessantly; paramedics wheel stretchers in as patients moan in pain.

“It’s like a war zone,” said physician assistant Emmy Cassagnol. “When it gets packed, it’s overwhelming. Our sickest patients are often our geriatric patients, and they get lost in the shuffle.”

But just on the other side of the wall is another, smaller emergency room designed specifically for those elderly patients.

Patients like Hattie Hill, who is 105 years old and still living at home. A caregiver brought her in one rainy day in late spring because she had a leg infection that wasn’t responding to antibiotics. Hill, who also has arthritis and a history of strokes, said she prefers the emergency room for seniors because she gets more attention.

“I don’t have to wait so long,” she said. “And it’s not so loud.”

Packed emergency rooms are unpleasant for everyone. But they can be dangerous for elderly patients, many of whom come in with multiple chronic diseases on top of a potentially life-threatening illness or injury.

This KHN story also ran on CNN.com. It can be republished for free (details).

“Who is going to suffer the most from these crowded conditions?” asked Ula Hwang, associate professor in the emergency medicine and geriatrics departments at the Mount Sinai School of Medicine. “It is going to be the older adult … the poor older patient with dementia lying in the stretcher with a brewing infection that is forgotten about because it’s crazy, chaotic and crowded.”

Seniors who come into traditional emergency rooms are frequently subjected to numerous and sometimes unnecessary tests and procedures, according to research and experts. They stay longer and their diagnoses are less accurate than younger patients. And they are more frequently admitted to the hospital by ER doctors overwhelmed by the constant influx of very sick patients.

“You’ve got this surge of more and more older adults coming to the emergency departments,” said Kevin Biese, co-director of geriatric emergency medicine at the University of North Carolina School of Medicine. “Yet there hasn’t necessarily been this recognition that [they need] different screening, different treatment and they are going to have different outcomes.”

Geriatric emergency rooms, which are slowly spreading across the country, provide seniors with more expertise from physicians, nurses and others trained specifically to diagnose and care for the elderly, researchers said.

Mount Sinai Hospital in New York opened its geriatric emergency room in 2012 as part of a nationwide effort to find a better way to treat elderly patients. (Heidi de Marco/KHN)

Mount Sinai Hospital, which opened its geriatric emergency room in 2012, is part of a nationwide effort to find a better way to treat elderly patients. (Heidi de Marco/KHN)

The staff in these specialized ERs collaborate closely not only to treat the seniors’ immediate health problems but also to reduce their risk of confusion, bed sores and over-medication. Senior ERs are designed to be more quiet and tranquil.

Geriatric ERs have the potential to lower health care costs because staff can more carefully discern who needs to be admitted and who can be cared for outside of hospital walls, Hwang and others said. That tends to reduce hospitalizations among the elderly.

Mount Sinai, which opened its geriatric emergency room in 2012, is part of a nationwide effort to find a better way to treat elderly patients. The first geriatric ER opened in New Jersey in 2008, and now there are more than 100 such units nationwide. Several others are being planned, including in California, North Carolina, Connecticut and Texas.

Geriatric ERs vary widely. Some are separate units with trained staff; others are merely sections within traditional emergency rooms with extra hearing aids and other senior supplies. But professional medical organizations have developed guidelines to standardize design, staffing and patient screening.

The boomlet in geriatric emergency rooms stems in part from an increase in older patients with complex conditions who are seeking care in regular ERs. That has caused some providers and hospitals to seek more effective and efficient ways to treat them.


    Castellanos waits to be seen by a doctor at the geriatric emergency room at Mount Sinai Hospital. (Heidi de Marco/KHN)


    Castellanos gets checked by the ER doctor. She came in to the geriatric emergency room with abdominal pain. (Heidi de Marco/KHN)

    About 20.4 million patients over the age of 65 were treated in emergency rooms in 2011, up from 15.9 million a decade earlier, according to a national hospital survey conducted by the Centers for Disease Control and Prevention. As the population ages, older patients are expected to make up an increasing share of ER patients.

    The Affordable Care Act also has fueled the expansion of senior emergency rooms. The law assesses penalties when too many patients return to a hospital too soon after discharge. Facilities have tried to reduce readmissions in part by providing better emergency care and triage.

    Now, that growth could continue as hospitals face additional pressure to provide more efficient and less costly care to their Medicare patients. The Centers for Medicare and Medicaid Services announced in January that within two years, half of all traditional Medicare payments will go to providers based on quality of care rather than quantity of services.

    Emergency departments are the perfect places to make changes that could help control spending, because they are gateways between home and costly hospitalizations, Hwang said. About 60 percent of elderly patients who get hospitalized come through the emergency room, according to a 2013 Rand Corporation study. A quarter of those hospitalizations are preventable, according to one 2012 federal study.

    “Hospitals that before didn’t think there was any need for this are saying, ‘Can you help us create a geriatric ED?’” Hwang said.

    Hospitals also may view specialized emergency departments as a marketing tool to reach the growing elderly population.

    John Fornieri, 80, screams in pain as the doctor puts pressure on his hip. Fornieri, an artist with arthritis and a heart condition, was admitted to the hospital after he lost his balance and fell to the ground. (Heidi de Marco/KHN)

    John Fornieri, 80, screams in pain as the doctor puts pressure on his hip. Fornieri, an artist with arthritis and a heart condition, was admitted to the hospital after he lost his balance and fell to the ground. (Heidi de Marco/KHN)

    The geriatric emergency room at Mount Sinai is set up differently than traditional emergency rooms. It has thicker mattresses to help reduce the chance of bed sores, raised toilet seats, hand rails in the hallways and reduced-noise curtains.

    The department is allotted 20 beds, but the main hospital sometimes steals them for other patients. That leaves some older ER patients waiting in the hallway.

    Over a two-day period in May, dozens of older patients were treated for falls, dizziness, severe pain and shortness of breath.

    John Fornieri, 80, came in after falling on his floor at home. Fornieri, an artist with arthritis and a heart condition, said he nearly lost consciousness. An x-ray showed he had broken a hip.

    Fornieri said he was grateful that the geriatric emergency room staff was trained to care for the elderly. “Seniors need a different kind of attention,” he said. “We can’t see and we can’t hear like we used to. We can’t even talk the same.”

    A friend visits Fornieri in the geriatric emergency room infection at Mount Sinai Hospital. (Heidi de Marco/KHN)

    A friend visits Fornieri in the geriatric emergency room at Mount Sinai Hospital. (Heidi de Marco/KHN)

    Denise Nassisi, a physician who runs the geriatric ER, said her patients are at greater risk of falling, medication errors and infections than younger patients. Seemingly routine injuries can have devastating effects. Broken arms, for example, can make it difficult for elderly people to care for themselves.

    Many also have dementia or other cognitive impairments that make it harder to get an accurate account of their medical history and the reason for their ER visit, she said. About half of the patients arrive unaccompanied by relatives or caregivers.

    In the past, Nassisi said, doctors frequently just admitted the patients, leaving it to the hospital staff to do a more complete workup. But now, Nassisi and her team of social workers, therapists, nurses and others try to screen, diagnose and treat patients more thoroughly in the ER, she said.

    Hattie Hill, 105, was admitted to Mt. Sinai Hospital in New York on May 24, 2016. Hill, who has arthritis and a history of strokes, said she prefers the emergency room for seniors because of the extra attention. (Heidi de Marco/KHN)

    Hattie Hill, 105, who has arthritis and a history of strokes, said she prefers the emergency room for seniors because of the extra attention. (Heidi de Marco/KHN)

    Part of their job is to determine whether older patients can be safely discharged. That means they aren’t automatically admitted to the hospital, which would raise their risk of confusion and loss of independence. “We are trying to change the culture of just admitting,” Nassisi said.

    A patient doesn’t need a clean bill of health to be discharged. One 81-year-old patient came in for a toothache but also had a long list of illnesses: coronary artery disease, chronic pulmonary disease, arthritis, high blood pressure, prediabetes and high cholesterol. She was released with pain medication, antibiotics and an appointment with a surgeon.

    Another patient, who was 83 and had high blood pressure, anxiety and cancer, had fallen in her kitchen. She, too, was discharged after staff ensured she could walk on her own and had help at home.

    As providers determine where the patients should be treated, they also try to prevent them from becoming delirious, developing additional problems or taking potentially harmful medications.

    Physician assistant Jaclyn Schefkind evaluated Hill, the 105-year-old patient.

    “How are you doing?”

    “Bad,” Hill said, wincing in pain.

    After being seen in the emergency room, Castellanos waits for a hospital bed for further testing. (Heidi de Marco/KHN)

    After being seen in the emergency room, Castellanos waits for a hospital bed for further testing. (Heidi de Marco/KHN)

    Schefkind looked at Hill’s leg, red and swollen. She said they were going to get her some stronger antibiotics and something to relieve the pain.

    “Let’s start with Tylenol,” Schefkind said. “I don’t want to give you something too strong because it’s not safe when you’re older.”

    Shortly afterward, the team decided the best place to admit Hill so doctors could get her infection under control. A nurse pulled Hill’s blanket up to her chin, packed up her belongings and rolled her through the door toward the main hospital.

    This story was reported while participating in a fellowship supported by New America Media, the Gerontological Society of America and The Commonwealth Fund.

    KHN’s coverage of aging and long-term care issues is supported by a grant from The SCAN Foundation, and its coverage of late life and geriatric care is supported by The John A. Hartford Foundation.

    Public Health Officials Struggle To Identify Sepsis Before It Becomes Deadly

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    After Rory Staunton fell at the gym and cut his arm in March of 2012, the 12-year-old became feverish and vomited during the night, complaining of a sharp pain in his leg. When his parents called his pediatrician the next day, she wasn’t worried. She said there was a stomach virus going around New York City, and his leg pain was likely due to his fall.

    However, she advised his parents, Orlaith and Ciaran Staunton, to take the youngster to the emergency department because he might be dehydrated. There hospital workers did some blood work, gave him fluids and sent him home.

    The next day Rory’s pain and fever were worse. His skin was mottled and the tip of his nose turned blue. The Stauntons raced back to the hospital, where he was admitted to intensive care. The diagnosis: septic shock. Rory was fighting a system-wide infection that was turning his skin black and shutting down his organs. On Sunday, four days after he dove for the ball in gym class, Rory died.

    “It was frightening to think that something could kill my son so fast and it would be something that I had never heard of,” said Orlaith Staunton.

    She’s not alone. Sepsis kills more than 250,000 people every year. People at highest risk are those with weakened immune systems, the very young and elderly, patients with chronic diseases such as diabetes, cancer or kidney disease and those with illnesses such as pneumonia or who use catheters that can cause infections. But it can strike anyone, even a healthy child like Rory.

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    Sepsis is a body’s overwhelming response to infection. It typically occurs when germs from an infection get into the bloodstream and spread throughout the body. To fight the infection, the body mounts an immune response that may trigger inflammation that damages tissues and interferes with blood flow. That can lead to a drop in blood pressure, potentially causing organ failure and death.

    Yet many people don’t know about sepsis. Meanwhile, health care providers struggle to identify it early. There’s no simple diagnostic test and many symptoms — elevated heart and respiratory rates, fever or chills, pain — are common ones that are present in many conditions.

    Now, a growing number of doctors, hospitals, patient advocates and state and federal policymakers are pushing to educate consumers and clinicians and ensure procedures are followed that focus on prevention and early detection.

    The Stauntons established a foundation to raise awareness about the deadly infection, and in 2013 New York became the first state to require all hospitals to put in place procedures for its early recognition and treatment. This month, Illinois Governor Bruce Rauner signed a law requiring similar actions by hospitals in that state.

    The federal Centers For Disease Control and Prevention is scheduled to release a study Tuesday about sepsis as part of an effort to draw attention to the importance of prevention and early detection of the disease.

    “Early treatment is vital,” said Dr. Anthony Fiore, chief of the epidemiology research and innovations branch at the CDC’s Division of Healthcare Quality Promotion. “It’s an emergency that you need to deal with, like heart attack and stroke.”

    When sepsis advances to septic shock, characterized by severely low blood pressure, each hour of delay in administering antibiotics decreases the odds of survival by an average 7.6 percent, one study found.

    In 2013, sepsis, or septicemia as it’s sometimes called, accounted for nearly $24 billion in hospital costs, the most expensive condition treated. Up to half of people who get it die. Many cases are related to health care, such as catheter use or an infection acquired in the hospital, but large numbers come from outside the hospital, too.

    It was frightening to think that something could kill my son so fast and it would be something that I had never heard of.

    As the front line in identifying these cases, emergency departments typically have sepsis protocols in place to screen for the disease.

    “The work you do in those first three to six hours in the emergency department makes more difference in cost than the whole next several weeks in the ICU,” said Dr. Todd L. Slesinger, emergency medicine residency program director at Aventura Hospital and Medical Center in Aventura, Fla., who co-chairs a task force on sepsis at the American College of Emergency Physicians, which has developed a tool to help emergency department staff screen and treat the condition.

    Last fall, the federal Centers for Medicare & Medicaid Services started requiring hospitals to measure and report on efforts to screen for and treat the illness. In addition, Medicare sets penalties for a variety of hospital-acquired conditions, including high rates of post-operative sepsis.

    Patient advocates and policymakers agree that patients themselves are key to improving its prevention and early detection. Good hygiene can help prevent sepsis, including cleaning wounds. If someone gets injured, look for signs of sepsis, including rapid breathing or heart rate, confusion, fever or chills and pale or discolored skin.

    Don’t assume health care providers have it covered, experts advise. If you or someone you’re caring for has these symptoms, ask the health care provider directly: “Do you think it might be sepsis?”

    Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

    CMS Identifies Hospitals Paid Nearly $1.5B In 2015 Medicare Billing Settlement

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    A year after paying nearly $1.5 billion to more than a third of U.S. hospitals to resolve longstanding Medicare billing disputes, the Obama administration has disclosed who got paid.

    NewYork-Presbyterian Hospital, one of the nation’s largest academic medical centers, received nearly $16 million, more than any other hospital, according to data released by the Centers for Medicare & Medicaid Services.

    The second largest amount went to North Shore University Hospital in Manhasset, N.Y., which received $14.5 million. CHI Memorial Hospital in Chattanooga, Tenn., ranked third — $10.9 million — but two other New York-area hospitals rounded out the top five. Long Island Jewish Medical Center received $10.8 million and NYU Langone Medical Center was paid $10.5 million, the CMS data show.

    In total, 2,022 hospitals shared in the government payout, which settled 346,000 claims for reimbursement for treating Medicare patients admitted on or before Oct. 1, 2013. The largest payments resolved thousands of claims at once. Memorial Hospital’s settlement covered nearly 3,000 claims.

    To see a full list of the hospitals that were paid, click here.

    The settlements were a compromise to reduce a swollen backlog of disputes over what hospitals argued they were owed. At one time, pending cases under appeal stretched more than two years.

    The resolutions followed the government’s offer in 2014 to pay the hospitals 68 percent of the value of inpatient claims that had been caught in Medicare’s hearings and appeals process, some for years.

    The new CMS data show 35 hospitals received more than $5 million each, but most were paid far less. The median payment — meaning half the hospitals got more and half got less — was $307,642, according to a Kaiser Health News analysis. The data was released in response to a Freedom of Information Act request made last year by KHN.

    Medicare pays private contractors known as recovery audit contractors, or RACs, to review hospital claims for improper payments. If hospitals disagree with RACs’ decisions, they can appeal. Most RAC reviews have focused on costly inpatient-status claims, questioning whether certain patients should have been admitted to hospitals. Many audits determine that short patient stays should have been billed at less-costly outpatient rates.

    This KHN story also ran in Modern Healthcare. It can be republished for free (details).

    Last year’s settlement indicated that many hospitals preferred to settle quickly for a discounted amount rather than keep claims tied up in appeals for what could have been months or even years. Hospitals that declined to settle with Medicare still had the option to continue their appeal.

    Hospitals and RACs have long battled over audits and appeals. RACs — which are paid a fee for every audit that recovers money for Medicare — argue they are protecting taxpayer dollars and ensuring that hospitals are paid for appropriate patient services. Hospitals criticize the RAC process as burdensome and liken contractors to bounty hunters focused on making money for themselves.

    CMS has said 18 percent of appealed claims were overturned in favor of hospitals between Oct. 1, 2013 and Sept. 30, 2014, but the American Hospital Association reported in 2014 that self-reported data by its members showed hospitals had won 66 percent of appeals since 2010.

    The $1.5 billion paid in last year’s settlements contrast with more than $9.6 billion collected by RACs from 2010 through September 2015. More than 90 percent of collections by RACs were from hospitals.

    Sydney Lupkin contributed to this report.

    Preventive Care, Specialists Key To Controlling Kidney Failure Treatment Costs

    Kidney failure costs Medicare close to $30 billion per year, and the disease is only expected to become more common. But new research suggests a path forward that could save money while also improving patients’ health.

    The findings, published Monday in JAMA Internal Medicine, suggest that focusing on modifiable factors for patients with chronic kidney disease, such as promoting early access to nephrologists, could improve overall care, prevent complications and cut health spending.

    Adult patients experiencing end-stage renal disease, who generally are eligible for Medicare, were as much as four-to-six times more likely to need emergency treatment than the average Medicare beneficiary. But many of those expensive visits, the researchers suggest, could have been avoided.

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    This KHN story can be republished for free (details).

    “These people represent less than 1 percent of the Medicare population, and they take up more than 7 percent of the Medicare budget,” said Rachel Patzer, director of health services research at the Emory Transplant Center, an assistant professor of surgery at the university’s medical school and one of the study’s co-authors. “We’re trying to focus on what’s preventable. What can we do about it?”

    A fair bit, the analysis suggests.

    This research is the first to examine how this population uses the emergency room, and to use that as a lens to understand what kind of medical care they receive. It identified which patients were most likely to seek more expensive emergency care, and how often they went on to need hospital treatment.

    The researchers analyzed Medicare claims data for patients 18 or older who were diagnosed between January 2005 and December 2011 with the kidney disease — usually caused by conditions like high blood pressure of diabetes, and treatable through dialysis or surgery. Because Medicare generally covers end-stage renal disease for the non-elderly patients and those older than 65, the claims data reflected a national sample, the authors wrote.

    And there was a theme to their conclusions: “Much better access to care is a really big factor here,” Patzer said.

    For one thing, the researchers found, emphasizing preventive medicine for patients who are at risk of end-stage renal disease but don’t yet need dialysis could make a big difference. Patients that received such care, they wrote, which would include regular access to kidney specialists or to pharmaceutical interventions such as a particular hormone supplement that controls the worsening of kidney function, were far less likely to go to the emergency department. That matters in terms of improving the quality of care, and could also make “a substantial dent” in public health spending, Patzer said.

    For patients who do require dialysis, certain factors in their regular treatment — such as the use of catheters, which are inserted in the vein during such treatments, were much more likely to lead to patients’ infections and send them to the emergency room, Patzer said. That suggests some of these visits could be averted by treating patients instead with a fistula, a dialysis insertion that is more sophisticated but also takes more time to properly settle into the patient’s body.

    The analysis doesn’t note what sorts of changes would be most cost-effective, or attach a dollar amount to the potential savings. That, Patzer said, would be an important line for further research.

    It has long been known that kidney failure patients are among the most costly, noted Dr. Howard Forman, a professor of diagnostic radiology at Yale School of Medicine and director of its public health school’s health care management program. And this analysis helps illuminate how to address that issue, he added. Foreman was not involved with the JAMA research.

    From a medical care standpoint, he said, it’s important to better coordinate treatment for patients, so that they have someone in charge of making sure they don’t get sicker. Treating advanced kidney disease is complicated, and requires a patient to visit a plethora of health professionals. Communication between those providers can get spotty, and there’s no one person invested in keeping track of the person’s overall health.

    “These are patients interacting with the health system 200, 150 times a year, minimum,” he said. “They have points of care with the dialysis provider, the endocrinologist, the home health care aide, the vascular surgeon, the radiologist. We need someone who is willing to coordinate care for the patient, so their health is paramount.”

    But there are other issues to work out. Many people learn only upon visiting the ER that they are experiencing advanced renal disease, Patzer said, a shortcoming that highlights the need for early access to kidney specialists.

    The analysis found that kidney failure patients who were younger, female or black had greater odds of visiting the emergency department. The same held true for “dual eligible” — people who, in addition to Medicare, were enrolled in Medicaid, the federal-state insurance program for low-income people. That, Patzer said, highlights deeper inequities in the health system, and underscores their financial and public health implications.

    Academics and policy makers need to better tease out what drives those inequities and ways to address them, she said. But there are themes.

    “These are patients who didn’t have access to preventive care early in the course of their lives. It doesn’t start with a diagnosis of end-stage renal disease,” she said. “Throughout their lives, they have had less access.”

    If health care providers figure out a way to undercut ER usage here, Forman said, that could provide a model for other diseases. And, he said, it could result in vastly improved care for patients at a better price point.

    “This could be a microcosm for other health care challenges that may be smaller populations, but add up to a lot of money,” he said. “There’s an opportunity for both the patient to receive higher quality, better quality care, and for the Medicare program to see lowered expenses.”

    Doctors, Hospitals Prepare For Difficult Talks Surrounding Medical Mistakes

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    It was a fourth of July weekend but Sharon O’ Brien, an intensive care physician, was not celebrating. A medical error earlier landed a patient in her ICU. The patient eventually died — and she had to decide what to tell the patient’s family.

    Should she apologize? How much detail should she share about the mistake? Would a frank discussion put the hospital at risk of a lawsuit?

    “I had never really been in that situation before,” said O’Brien, recalling the 2004 incident. She decided to tell the patient’s family about the error, bracing herself to face their anger. While the family was stricken by grief, they appreciated her honesty.

    “I spent a lot of time with the patient’s family supporting them and explaining what had happened, and yet I felt so unsupported in that experience,” said O’Brien, a physician at MedStar Georgetown University Hospital.

    Hospitals have traditionally been reticent to disclose to patients or their family members the specifics of how a medical procedure didn’t go as planned for fear of malpractice lawsuits. In recent years, though, many are beginning to consider a change. Instead of the usual “deny-and-defend” approach, they are revamping their policies to be more open.

    This KHN story also ran in USA Today. It can be republished for free (details).

    To help them move in this direction, the federal Agency for Healthcare Research and Quality released in May an online toolkit designed to expand the use of the agency’s “Communication and Optimal Resolution” process, which establishes guidelines for adopting more transparency in communicating adverse events.

    Hospitals’ interest in this approach has been fueled by studies showing that patients want to know when an adverse event has occurred and doctors suffer from anxiety when there are restrictions and concerns about what they are allowed to discuss. Some studies have found that patients are more likely to sue when they perceive that there is a lack of honesty.

    MedStar Health, which is among the largest health providers in Maryland and the Washington, D.C. region, has been one of the pioneers in setting up such programs at all of its 10 hospitals. In 2012, it launched standardized program based on AHRQ’s guidelines across the system that drew on similar initiatives that were already in place at its various facilities. O’Brien was one of the first to sign up as a volunteer at Georgetown University Hospital.

    The initiative established a standardized approach for physicians when they have to communicate with patients and family members about adverse events. A team of physicians — called the “Go Team” — complete a four-hour initial training program and then annual booster courses every six to eight months to prepare them for these conversations and also to help other staff physicians who confront the problem. After that, Go Team members are on call 24/7 to provide guidance. Another program, “Care for the Caregiver,” provides psychological support to other physicians as needed.

    One of central elements of the training program for the Go Team involves role-playing exercises with professional actors who simulated patient scenarios. O’Brien remembers clearly one session when she had to confront actors portraying patient’s family almost hysterical with anger. The patient had suffered from severe burns due to a fire in the operating room.

    “It’s scary to be in that room even though I knew it was a simulation,” she said. It was helpful, “in terms of preparing for the family’s emotions … and making sure they get the information that is needed while acknowledging that they needed to express their emotions.”

    Doctor and patient

    The exercises are uncomfortable and incredibly personal, O’ Brien said. Through the training sessions, she learned about the importance of being honest upfront, expressing empathy and apologizing.

    MedStar is not the only hospital system implementing the system. Since 2012, second-year medical students at Johns Hopkins University are required to learn how to disclose adverse events in their patient safety classes by participating role-playing exercises. Several Harvard teaching hospitals also have coaching models similar to MedStar’s.

    Part of the motivation for David Mayer, vice president of quality and safety for MedStar Health, to establish open communication programs came from his personal experience about a decade ago when he was the co-executive director at the University of Illinois Institute for Patient Safety Excellence. Back then, he and his colleagues were frustrated with the tension between doctors, patients and the amount of lawsuits the hospital had to field from patients who wanted to know more.

    “We felt horrible that we couldn’t openly talk to patients and families … our attorneys would tell us we can’t do that because we’re going to give them all the information that will cause us to lose a lawsuit,” he said. “There were no winners.”

    After a colleague brought the issue to the attention of that hospital’s board, they began working on a better system, said Mayer, who participated in the development of AHRQ’s guidelines. And when Mayer arrived at MedStar he continued working on this mission. The results he has seen reflect a hospital culture shift.

    “Instead of shutting down conversations with patients, we want to respond to them immediately, we want to share everything we can with them,” Mayer said. “Many times when they get their questions answered in an open and honest way, they realize a lawsuit wasn’t really necessary.”

    Mayer said by emphasizing transparency and creating an open environment, the doctors have been able to learn from past events and improve their performance. At MedStar Health, he has seen a 60 percent reduction in serious safety events in the past four years.

    But the openness also has a cost. The hospital might have to pay for remedies, such as waiving medical bills, if a patient believes the hospital was at fault.

    Mayer recognizes that there are still many hospitals who go by the “deny and defend” approach.

    “There are programs that say they’re doing it when they’re not really doing it, they’re not waiving bills, they’re still charging the Centers for Medicare & Medicaid Services and third party payers for the mistakes,” he said. “There are a lot of people making money off denying what is technically right for the patient.”

    ‘More At Peace’: Interpreters Key To Easing Patients’ Final Days

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    MORENO VALLEY, Calif. — Alfredo David lay in bed, looking deflated under an Avengers blanket, as a doctor, two nurses, and medical interpreter Veronica Maldonado entered his hospital room. He wrapped up a call from his wife, then fiddled idly with his phone.

    He had received distressing news from the team at the Riverside University Health System Medical Center: His sharp abdominal pains and difficulty eating, previously diagnosed at another hospital as gastritis, were actually caused by metastatic cancer. The tumor was growing. David, 45, was not going to recover.

    Maldonado pulled up a chair for herself and another for palliative care specialist Dr. Faheem Jukaku, and the two sat at David’s eye level. Pointing to an MRI image of David’s abdomen, Jukaku explained in English how surgeons would attempt to ease his symptoms the next day. Maldonado translated Jukaku’s words into Spanish, modulating her tone of voice to match the doctor’s delivery.

    This story also ran in Stat. It can be republished for free (details).

    David listened — seeming resigned, but grateful that some relief might be on the way. Occasionally he’d ask a question in Spanish about the procedure, which Maldonado translated back to Jukaku. Asked about his earlier misdiagnosis, he rolled his eyes.

    David, a mechanic and father of three teenagers, understands some English. But he said Maldonado’s help had been crucial to deciding on his new course of treatment. Thanks to her, he said in Spanish as she translated, “I don’t have any misunderstandings. I’m more at peace.”

    Interpreters routinely help people who speak limited English — close to 9 percent of the U.S. population, and growing — understand what’s happening in the hospital. They become even more indispensable during patients’ dying days. But specialists say interpreters need extra training to capture the nuances of language around death.

    Many doctors and nurses need the assistance of interpreters not only to overcome language barriers but also to navigate cultural differences. Opportunities for miscommunication with patients abound. Words don’t always mean the same thing in every language.

    Medical staff, already nervous about delivering bad news, may speak too quickly, saying too much or too little. They may not realize patients aren’t comprehending that the team can no longer save their lives.

    “That’s when it gets interesting,” Maldonado said. “Does the doctor understand that the patient isn’t understanding?”

    At Riverside and some other hospitals, interpreters have completed special training and work closely with palliative care teams to help patients and their families decide when the time has come to stop trying to cure a disease and start focusing on comfort and quality of life.

    Palliative care is unusual among medical specialties, said Dr. Neil Wenger, an internist who is chair of the ethics committee at the UCLA Medical Center. Rather than curing or eliminating disease, its purpose is to manage symptoms for patients who are not expected to recover.

    Medical interpreter Veronica Maldonado helps doctors and nurses in the palliative care team translate difficult end-of-life concepts at Riverside University Health System Medical Center. (Heidi de Marco/KHN)

    Medical interpreter Veronica Maldonado helps doctors and nurses in the palliative care team translate difficult end-of-life concepts at Riverside University Health System Medical Center. (Heidi de Marco/KHN)

    Physicians and nurses talk at length with dying patients and their families about their wishes, collaborating with social workers, chaplains and hospice workers. Under any circumstances, the clinical shift from curing disease to treating symptoms can be difficult for doctors and patients. Advance care planning — a process used to help patients understand their prognoses and explore preferences for future care — is more like psychotherapy than a routine medical consult, Wenger said.

    “This is not a straightforward set of questions,” he said. “You ask a question, and the next question is dependent on the response. It’s very easy to use the wrong words and startle the person and put them off. It’s a dangerous conversation.”

    When there’s a language or culture gap, Wenger added, the interaction becomes much more difficult. Both sides can fail to recognize important nuances, such as body language and variations in the meaning of words.

    Wenger said that he finds it hard to speak with patients about palliative care through an interpreter because, in his experience, unexpected turns in the conversation and difficult emotions can literally get lost in translation.

    Others say that interpreters are key for helping patients make sense of palliative care — that they just need extra training to be good at it.

    Kate O’Malley, a senior program officer at the California Health Care Foundation, said she started thinking about interpreters when the Oakland, Calif.-based foundation funded new palliative care programs in safety net hospitals throughout the state. It found that vast numbers of patients did not speak English as their primary language.

    At Los Angeles County-USC Medical Center, for instance, 68 percent of palliative care patients in 2011 spoke a first language other than English. At San Francisco General Hospital, that number was 45 percent; at Riverside County Medical Center, 33 percent.

    Maldonado listens to physician Faheem Jukaku as he explains recent test results to David. Maldonado translates the information from English to Spanish for David. (Heidi de Marco/KHN)

    Maldonado listens to physician Faheem Jukaku as he explains recent test results to David. Maldonado translates the information from English to Spanish for David. (Heidi de Marco/KHN)

    “One of the key tenets of palliative care is to have goals-of-care discussions,” O’Malley said. So when patients speak a different language, “How do you do that?” Her team found that palliative care providers sometimes brought in interpreters to assist, but that many of them didn’t have the knowledge, training, or vocabulary to convey key concepts.

    Take the idea of hospice, the comprehensive palliative care services available to patients in their last months, often at home. For people from Mexico, the Spanish equivalent hospicio “conjures up the image of the worst nursing home you could ever imagine, where people are disabled and left for dead,” said Dr. Anne Kinderman, who runs the palliative care service at Zuckerberg San Francisco General Hospital. “If I come into the room and say, ‘I’m here to tell you about this great thing called hospicio,’ there’s a cognitive disconnect,” she said.

    Interpreters have to learn how to bridge that gap. “You have to know how to present [hospice] in Spanish,” said Viviana Marquez, supervisor of the department of language and cultural services at Riverside, and Maldonado’s boss. “It’s not a matter of finding an equivalent word, because there is none. You have to get into a deeper explanation.”

    Without that kind of clear communication, many Latino families never understand that hospice isn’t a place but rather a suite of comfort-focused extra services, available at home, that relatives usually can’t provide on their own, said Beverly Treumann, a medical interpreter in Los Angeles who now works as head of quality assurance for the Health Care Interpreter Network, an Emeryville, Calif.-based cooperative that lets member hospitals share interpreters through videoconferencing.

    Treumann said she once trained an interpreter who had refused hospice for her own mother because of such a misunderstanding. “This interpreter, she was heartbroken,” Treumann said. “The family took care of the mother — but without the extras that hospice could provide. The mother suffered because the concept wasn’t explained adequately.”

    Cultural differences can breed other misunderstandings too, Kinderman said. Families from many parts of the world approach health care decisions as a group. That can make a palliative care concept like a health care proxy — a person who makes medical decisions when a patient becomes incapacitated — hard for them to grasp.

    Hoping to bypass all these potential minefields, the California Health Care Foundation recruited Kinderman and other experts to help develop a palliative care curriculum for interpreters.

    It introduces the palliative care concept, defining terms and providing vocabulary to help interpreters accurately convey key ideas. It encourages interpreters to alert physicians when they suspect a patient and his family don’t understand what they are told. It also includes materials to help interpreters deal with their own complicated emotions during palliative care encounters.

    Marquez said that all 10 of the Riverside medical center’s interpreters have completed some version of the curriculum, which is taught in person or on the web.

    For Maldonado, who has been interpreting for about five years, working with palliative care patients has become a passion.

    She attends the palliative care team’s weekly meetings, working closely with staff and patients. If Maldonado is around when a difficult conversation arises, she’s the first person Marquez sends to interpret. If Maldonado or another interpreter who is comfortable with palliative care work is not available, Jukaku said, “we try to postpone the talk.”

    Last year, Maldonado taught a palliative care training course for interpreters. The session, held at the Moreno Valley hospital, attracted around 50 participants from throughout Southern California.

    The participants wanted to talk about terminology and “vicarious trauma” — the emotional toll that interpreting for palliative care patients can take. They shared self-protection techniques. Marquez recommended using the third-person voice instead of the customary first person: rather than directly translating the doctor’s words and saying “I recommend,” an interpreter might create emotional distance for herself in difficult moments by saying, “your doctor recommends.”

    Maldonado said she, too, has trouble sometimes containing her feelings when families are distraught or have trouble accepting that a patient may soon die. “Later in the day I say, ‘Oh my God … can I vent?’ I have to vent.”

    But Maldonado also noted that raw emotion from the families means she is doing her job well.

    “When we get the tears and the reactions,” she said, “we know we’ve rendered the message.”

    This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

    KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.