Scarcity Of Mental Health Care Means Patients — Especially Kids — Land In ER

Scarcity Of Mental Health Care Means Patients — Especially Kids — Land In ER

On any given day, pediatrician Lindsay Irvin estimates a quarter of her patients need psychiatric help. She sees teens who say they are suicidal, and elementary school children who suffer chest pains stemming from bullying anxiety.

Though she does her best, she doesn’t consider herself qualified to treat them at the level they need at her practice in San Antonio. She doesn’t have the training, she said, to figure which medications are best suited to treat their various mental health conditions. And she doesn’t have time. She’s juggling stomach ailments, vaccinations and ear aches.

As a result, she’s seen some of her patients wind up in the emergency room or going without care. These experiences evidence the degree of unmet need for mental health treatment.  “I see kids’ lives destroyed by not getting care,” she said.

Now, research abstracts presented Monday by the American College of Emergency Physicians offers insights into how frequently patients with mental health issues land in the emergency room — often because opportunities to intervene earlier are missed.

The researchers analyzed data compiled by the National Hospital Ambulatory Medical Care Survey, which tracked mental health visits to the emergency department between 2001 and 2011. The data tracks a national sample of patients who use hospital emergency and outpatient departments.

Compared with patients who have physical illnesses, the researchers found that people with mental health conditions rely more on the emergency department, and are more likely to be admitted when they show up. They tend to stay longer, too. The researchers have not yet described down how the visits broke out by age. But anecdotally, children and older patients — “the extremes” — appear particularly affected, said Suzanne Lippert, a clinical assistant professor in emergency medicine at Stanford University, and lead author on the abstracts.

These findings underscore two concerns, Lippert said. They highlight potential consequences when patients can’t find good outpatient mental health care, and that, when psychiatric patients arrive in a crisis, there’s often no good place for them to continue treatment once the immediate issue has been addressed.

Medical patients can usually be sent home “because we know they’ll be evaluated by [their] doctor in one or two days,” Lippert said. But psychiatric patients don’t always have that option because of gaps in the mental health care system.

Young patients may be affected the most, said Steven Schlozman, an assistant professor of psychiatry at Harvard Medical School and associate director of the Clay Center for Young Healthy Minds at Massachusetts General Hospital. He was not affiliated with the research.

“It’s a numbers game. Unless you live in a large urban area, you’re very unlikely to find a child psychiatrist,” Schlozman said. The emergency department, then, often is the only realistic venue for care.

Some numbers: About 6 percent of all emergency department patients — of all ages — had a psychiatric condition. More than 1 in 5 were admitted, compared with just over 13 percent of medical patients, and about 11 percent required transfer to another facility, compared with 1.4 percent. About 23 percent of mental health patients stayed in emergency care for longer than 6 hours, and about 1.3 percent for more than 24 hours — compared with 10 percent and half a percent of medical patients.

The most severely ill mental health patients were far more likely to spend extended periods of time in the ER. Bipolar disorder, depression, psychosis and having multiple conditions all tracked with stays longer than 24 hours.

These findings, the researchers write, highlight a “growing crisis.”

There is also a national shortage of inpatient psych beds, so patients have to wait longer in the ER, Lippert said. She’s seen them stay for over a week.

An online poll of emergency physicians released Oct. 17 offers evidence of how this plays out for young psychiatric patients. Of the 1,700 physicians responding, more than half (57 percent) reported increased wait times and boarding for children with mental health issues.

Plus, psychiatric patients can be harmed by long stays in cramped, overused emergency quarters, said Thomas Chun, an associate professor of emergency medicine and pediatrics at Brown University.

“We are the wrong site for these patients, and they have very important, very special needs. Our crazy, chaotic environment is not a good place for them,” said Chun, who was not affiliated with the abstracts.

Meanwhile, the young patients are least likely to get reliable care even after leaving. Whether they need regular follow-up with a psychiatrist, or a transfer to specialized facility, the resources often aren’t in place. The American Academy of Child and Adolescent Psychiatry estimates 8,300 such specialists practice in the country, while more than 15 million young patients need services.

“They’ll land in a pediatrician or family practice,” Irvin said. “I’m not trained to navigate the ins and outs of psychotropic meds,” she added, recalling difficulties she recently had finding a specialist who could prescribe the necessary medications and continue working with a suicidal teenage girl, who was one of her patients.

And children in crisis sometimes wait weeks for proper in-patient treatment, Chun said. That’s less common in his home state of Rhode Island which, he said, is “fairly resource-rich” in terms of psychiatric care — but he hears it often from colleagues in New York. Doctors will agree a child needs to be transferred, but no beds are available.

For children, the problem also doesn’t fall evenly. The resource squeeze is especially problematic for families with limited means, noted Alfiee Breland-Noble, an associate professor of psychiatry at Georgetown University Medical Center, who was not involved with the research. Cost, coupled with a stigma toward mental conditions, means low-income families are more likely to let a child’s ailment slide, until it reaches a crisis point.

That tracks with another finding: Emergency psychiatric patients were more likely to be uninsured than were physical health ones. About 22 percent of mental health patients lacked coverage, versus 15 percent for physical conditions — likely, Lippert said, in part because of the particular challenges the uninsured face in finding affordable psychiatry.

In San Antonio, just one visit to a child therapist can cost hundreds of dollars out of pocket, Irvin said. For her patients, the choice can be a week’s worth of groceries or seeing the doctor. Often, that means, “a kid will go neglected.”

By the time a child gets treatment, she added the mental condition can have produced physical ailments, too. It’s more expensive to treat, it’s bad medicine, and it’s avoidable, she said.

“These kids should never be in the emergency room,” she said. “They shouldn’t be waiting for 24 hours in a plastic chair.”

To Get Disability Help In Kansas, Thousands Face A 7-Year Medicaid Waitlist

To Get Disability Help In Kansas, Thousands Face A 7-Year Medicaid Waitlist

For 22 years, Nick Fugate washed dishes at a local hotel near his home in Olathe, Kan.

“There was nothing easy,” said the 42-year-old man who has an intellectual disability, chuckling. “I just constantly had to scrape the dishes off to get them clean.”

The work did sometimes get tedious, he said, but he didn’t really mind. “Just as long as I got the job done, it was fine,” he said.

Nick’s father, Ron Fugate, said the job was the key to the self-reliance he’s wanted for his son ever since Nick was born with an intellectual disability 42 years ago.

“From our perspective,” Ron said, “having a job, being independent, participating in the community, paying taxes, being a good citizen — that’s a dream parents have for their children in general.”

But things got tough last year when Nick lost his job and his health insurance. For the first time, he enrolled in Medicaid. He got his basic medical care covered right away, but in Kansas, there’s now a long waitlist — a seven-year wait — for people with intellectual disabilities to get the services they need. Decades ago, Fugate might have been institutionalized, but Medicaid now provides services to help people remain independent — including job coaching, help buying groceries, food preparation and transportation. These are the services Nick is eligible for but must wait to receive through Medicaid.

In the months since losing his employment, Nick has had to pay around $1,000 a month out of pocket for help buying groceries, career coaching and transportation. Those expenses are quickly burning through his life savings.

This year, families like the Fugates have been speaking out about that long waitlist and about other Medicaid problems at public forums like one held at the Jack Reardon Convention Center in Kansas City, Kan., in May.

In a basement meeting room, hundreds of people with disabilities, their families and caseworkers railed against KanCare — the state Medicaid program. Some heckled the moderator. The state has been gathering feedback because it needs the federal government’s permission to continue running KanCare.

In 2013, Republican Gov. Sam Brownback put KanCare under the management of three private companies that promised to improve services, cut waste and save enough money to end the long waits for the kind of services Nick needs.

Two and a half years later, many families say they’ve seen few signs of improvement, especially in terms of shortening the waitlist. In fact, it’s actually grown by a few hundred names to about 3,500. And, except in emergency situations, the wait to get treatment averages seven years.

But an end is in view, insisted Brandt Haehn, commissioner for Home and Community Based Services, part of the agency that oversees KanCare.

“I think everybody in the system is doing the best job they can do to provide the people services,” Haehn said.

In August, the department announced it had eliminated a different waiting list — the one for getting physical disability services. That claim has been challenged by advocates, who say many people were dropped from the list without notice.

But state officials say the progress that’s been made in speeding up the start of services for KanCare applicants who have physical disabilities demonstrates that the agency can get results.

Haehn did acknowledge that cases like Nick Fugate’s, of developmental disability, are more expensive and complicated than physical disability cases. It will take time, he said, to come up with $1.5 billion — the state’s share of a $2.6 billion program — that’s needed to make sure that, at least through 2025, everyone qualified for these important services can get them without having to wait.

“Nothing would make me happier than to write a check and give all these people services, but that’s just not reality,” Haehn said. “So I have to deal with what reality is and try to use the money that I have to effect positive change in the most people.”

But Ron Fugate said KanCare had its chance. “We’re not treading water, we’re drowning,” he said. Families like his are quickly losing lifelong savings, he said, and their life situations are getting worse while they wait for the state to provide services.

“It’s not getting any better,” he said. “We’ve got to start taking some serious action on this and get it addressed. We’ve kicked the can down the road too long.”

The U.S. Department of Justice is investigating the waiting lists, although it declined to comment for this story.

The ability of the state of Kansas to act may be limited. Gov. Brownback’s tax cuts, which he initiated to boost the economy, have instead blown a hole in the state’s budget, leaving little money to apply to something like reducing the length of the KanCare waitlist.

Meanwhile, Ron Fugate and other advocates have been studying the ways Missouri recently eliminated its waiting list for similar services, in hopes of persuading Kansas legislators to adopt the same strategy.

Ron and his wife are both in their 70s and say they’re now watching their carefully laid plans for their son’s future slip away.

“After 22 years, it looked like he was going to be able to complete a career,” Ron said, “and it didn’t happen that way. All of this comes at a time in our lives where we’re in the waning seasons. We did not anticipate this kind of a challenge at this point.”

Kansas submits its application the federal government to reauthorize KanCare this month.

This story is part of a partnership that includes KCUR, NPR and Kaiser Health News.

By Alex Smith, KCUR

When The Blues Won’t Let You Be

When The Blues Won’t Let You Be

Rini Kramer-Carter has tried everything to pull herself out of her dark emotional hole: individual therapy, support groups, tai chi and numerous antidepressants.

The 73-year-old musician rattles off the list: Prozac, Cymbalta, Lexapro.

“I’ve been on a bunch,” she said. “I still cry all the time.”

She has what’s known as “treatment-resistant depression.” It’s commonly defined as depression that doesn’t respond to two different medications when taken one after the other, at the right dose and for the right amount of time.

Nearly 16 million adults have major depression, and up to a third do not respond to treatment. The disease afflicts people of all ages, but experts say that as many as half of older adults don’t get better with standard treatment.

Mental health experts expect treatment-resistant depression to become more widespread as baby boomers age. Boomers already have been identified as having higher rates of depression than previous generations, and over time their depression may no longer respond to medication.

“We are seeing treatment-resistant depression more, and we are recognizing it more,” said Helen Lavretsky, a geriatric psychiatrist at UCLA. “And in older adults, the answer to understanding what it is and what to do about it is more complicated than in younger adults.”

The consequences among older adults can be devastating. Persistent depression can raise the risk of early death and suicide, expedite memory decline and lead to a loss of independence.

The phenomenon isn’t well studied, but psychiatrists believe there are several reasons why depression in older adults may not respond to treatment. For one thing, if a person has been depressed and taken different medications for a long time, it can diminish their effectiveness. Patients also may neglect to take their medication as prescribed, because they have memory problems or they believe they no longer need it.

“Sometimes people say, ‘I’m better. I don’t need this,’ and stop the medicine,” said Anthony P. Weiner, who directs outpatient geriatric psychiatry at Massachusetts General Hospital. “Then the symptoms recur … and if the person goes back on the medicine, it may not be fully effective.”

Seniors are also more likely to have chronic medical illnesses, which raises the risk of depression. Their illnesses may make it more difficult for them to recover from depression. And it can mask whether antidepressants are working, because symptoms of chronic illness can be mistaken for depression — and vice versa.

Poverty, isolation, pain, grief over the loss of a spouse, or being a caregiver can also lead to or intensify a senior’s depression. And no matter what medication the patients take, Lavretsky noted, those external factors don’t go away.

“Either they change their perspective or they change their circumstances, or the depression just persists,” she said.

Antidepressants can help seniors gain some perspective. But Lavretsky and others agree that even if the medications are effective, they shouldn’t be used in isolation. “It’s an emotional experience,” Weiner said. “The whole answer isn’t just, ‘Oh, here take a pill.’ There is such a central role for psychotherapy.”

Kramer-Carter, who speaks slowly and hugs everyone she meets, has felt depressed for as long as she can remember. As a young adult, she worked as a secretary and a proofreader but got fired more than once because she had trouble getting out of bed and making it to work on time. She went to the emergency room many times and in her 30s, she was diagnosed with depression.

Now, she spends a few days each week driving her husband, Eugene Carter, to medical appointments. When she feels up to it, she volunteers delivering food to poor families.

Kramer-Carter checks all the boxes for being at high-risk of treatment-resistant depression. She is a long-time caregiver, first for her parents and now for her husband, a stroke survivor with short-term memory problems. Her own list of health problems is long: diabetes, high blood pressure, arthritis, fibromyalgia and gout.

“Who wants to be aching all the time?” she said.

Money problems don’t help either. The couple depends financially on Social Security. If she had more money, she said she would go to the theater or see live concerts. She misses both.

“We wouldn’t be so stuck,” she said. As it is, they spend everything on food, rent and other bills.

“It’s a constant struggle,” she said. “You have to borrow from Peter to pay Paul.”

Despite the prevalence of treatment-resistant depression, few resources exist to help psychiatrists make treatment decisions. Clinical trials have been scant, and there are no universally accepted protocols for the condition. The risks and benefits of different medications for older adults are largely unknown.

Given a shortage of geriatric psychiatrists, decisions on treatment are often left to primary care providers, who may not have relevant training or might be reluctant to take on such complicated care.

Doctors with patients who don’t respond to traditional therapies frequently make ad hoc decisions about whether to change the dosage, add a medication or switch to a new one.

“The clinicians use their best experience and trial and error,” said Evelyn Whitlock, chief science officer at the Patient-Centered Outcomes Research Institute. “They try something, and if it doesn’t work, they try something else.”

Trial and error is not ideal, she said. Many of these people have been living with depression for so many years, and providers need to be able to provide them with effective treatment.

In an effort to produce better medical outcomes for people with treatment-resistant depression, the Patient-Centered Outcomes Research Institute announced in July that it was funding three major studies that will test different approaches to the illness. The goal of the research is to produce tangible evidence that can be used immediately to help patients and their doctors make more informed treatment decisions.

The Washington, D.C. nonprofit, which finances health research, earmarked $40 million for the five-year studies, which it expects to begin this fall. They will include more than 2,500 patients at sites in California, Ohio, New York, Texas, Pennsylvania and elsewhere.

One of the studies will examine electroconvulsive therapy — its impact on quality of life and its potential for relieving the symptoms. Another will compare the effectiveness and safety of three strategies — using magnetic fields to stimulate nerve cells in the brain, adding an antipsychotic medication or switching to a specific antidepressant. The research will assess how these approaches affect the patients’ ability to function at home and work.

The third and largest study, with about 1,500 patients, will focus specifically on older adults, testing different drugs and studying how aging affects the risk and benefits of antidepressants. UCLA, where Kramer-Carter is being treated, is part of the third study, which will weigh life circumstances and disabilities in addition to depression.

The grants represent an “unprecedented opportunity to look at this population,” Lavretsky said.

“It will be a comprehensive look at the condition, why it happens and what are the ways of alleviating suffering,” she said. “Are there some similarities among all people with treatment-resistant depression? I suspect we will find some.”

On a recent afternoon, Rini Kramer-Carter visited Lavretsky at UCLA. She said the only time she truly escapes her sadness is when she plays percussion along with other musicians. But she hasn’t been playing lately, and she has been sleeping up to 20 hours a day.

“If I can stay in bed all day, that’s what I do,” she said.

Sometimes she watches TV comedies to try to dissipate her black moods.

Kramer-Carter said she learned about Lavretsky after seeing a newspaper ad for another research study, of a drug typically used to treat early-stage dementia. During their appointment, Lavretsky went over a list of questions included in the study. “On a scale of zero to 10, where do you place yourself in terms of depression?” the doctor asked her. Nine, she responded.

She told Lavretsky she sometimes felt restless and anxious, but not suicidal.

“Do you feel full of energy?” Lavretsky asked.

“Do I look like I am full of energy?” she responded with a sigh.

Lavretsky told her that no pill will completely fix her problems, but medication might give her more energy and the ability to cope. Kramer-Carter said she knows a drug won’t produce any miracles. She just wants some relief.

“I just want to be able to live my life,” she said.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

By Anna Gorman

Study Finds Nearby Retail Clinics Don’t Drive Down ER Visits

Study Finds Nearby Retail Clinics Don’t Drive Down ER Visits

Even if there’s a retail health clinic less than a 10-minute drive away, consumers are just as likely to go to the emergency department for low-level problems like bronchitis or urinary tract infections, a recent study found.

“Our results aren’t necessarily the wooden stake in the heart of retail clinics,” said Grant Martsolf, a policy researcher at the Rand Corp. and the lead author of the study, which appeared online this month in the Annals of Emergency Medicine. Retail clinics can play an important role in providing easier, more timely access to primary care services, Martsolf said. But the study results suggest that clinics aren’t the solution that policy experts have been hoping for to reduce expensive but unnecessary emergency department visits, he said.

The study examined data on emergency department visits for 11 minor health conditions at more than 2,000 emergency departments in 23 states between 2007 and 2012. Researchers analyzed the rate of emergency department visits for low-level problems, such as ear infections and sore throat, over time to see whether the opening of a nearby retail clinic led to a drop in those visits.

For the most part, they didn’t, even though the geographic overlap with emergency departments more than doubled during the study period. There was a very slight decrease in emergency department visits by privately insured patients with minor ailments, but not for other types of insurance, the study found.

Retail health clinics, often located in grocery and big-box stores, are typically staffed by nurse practitioners. They treat minor injuries and infections, give vaccines or sports physicals and provide preventive care. Up to 20 percent of emergency department visits are for low-level conditions that could be treated in retail or urgent care clinics, according to Rand research. Moving those visits out of the emergency department could save $4 billion annually, Rand estimates.

Insurers and employers, eager to reduce pricey emergency department visits, have tried to nudge consumers toward using retail health clinics by providing insurance coverage for them and in some cases even waiving copayments when people use them, said Dr. Ateev Mehrotra, an associate professor of health care policy at Harvard Medical School, who co-authored the study.

This study suggests that insurers may want to rethink that strategy, Mehrotra said. In other research he found that about 40 percent of retail clinic visits were substitutions for primary care or emergency department visits; the rest represented new health care use that might not otherwise have taken place. In other words, if not for the convenience of a retail clinic, people might have stayed home and nursed their sore throat on their own.

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

By Michelle Andrews

Children’s Hospital Partnership Boosts Care For Sick Kids

Children’s Hospital Partnership Boosts Care For Sick Kids

Maria Avelar’s baby doesn’t make a sound when he cries, but she knows when he’s had a tough day.

This morning, five-month-old Isaac Acevedo is attached to a ventilator in the neonatal intensive care unit (NICU). “He looks at me, he cries and he holds my fingers,” Avelar says. “He has ups and downs but he is a strong little baby.”

Isaac was born at just 24 weeks — four months early — at Providence Tarzana Medical Center in the San Fernando Valley. He weighed 1 pound, 5 ounces. Since then, he’s seen more specialists than Avelar can remember — for his heart, lungs, brain, eyes and stomach.

In the past, premature infants as ill as Isaac were often transferred to Children’s Hospital Los Angeles in Hollywood. But Steven Chin, a neonatologist there, said that didn’t make a lot of sense. Transferring such sick kids put them at risk of worse outcomes, and it was expensive.

“It costs a lot of money to send patients to different places,” Chin said. “It is not convenient to the families. It separates them and causes hardship for them.”

So Children’s Hospital Los Angeles started partnering with hospitals in the Providence Health & Services system so children could stay in their own communities.

The first partnership was with Providence Tarzana Medical Center. The hospital had a NICU, but it didn’t have the same level of expertise as Children’s. Beginning in 2015, doctors from Children’s Hospital Los Angeles Medical Group started operating the Tarzana hospital’s intensive care units for newborns and children, as well as the pediatric inpatient unit there.

For patients, that meant 24/7 monitoring by physicians and access to specialists from the Children’s medical group.

“Every subspecialty we have available to us at Children’s Hospital Los Angeles, we have those services available to us now at Providence Tarzana Medical Center,” said Chin, who also directs the NICU in Tarzana.

Children’s hospitals provide highly specialized care, but there are only about 200 of them in the nation. That means families sometimes have to travel long distances. The innovative partnership — in which a children’s hospital shares revenue and costs with a community hospital — changes that dynamic.

Similar partnerships are underway in several states, including Pennsylvania, Illinois and Washington.

“It is really hard to find these specialized, highly-trained people,” said Mark Wietecha, president and CEO of Children’s Hospital Association, which represents pediatric hospitals nationwide. “Trying to staff up for that on your own is pretty inefficient.”

It’s also risky, since the conditions of sick infants and children can decline quickly. Wietecha said the partnerships can follow several different models. In one, community hospitals contract with doctors from the children’s hospitals. In another, children’s hospitals lease space in the community hospital where they provide pediatric services.

More children’s hospitals may follow suit as they seek to expand their reach and prove their value in the face of growing pressure to reduce costs, said Glenn Melnick, a health economist and professor at the University of Southern California.

“For children’s hospitals generally, it is a very clever move,” Melnick said. “They will now have their footprint in many facilities in the community and it provides them some protection against what I think will be growing pressure on high-priced providers.”

The collaborations, Melnick said, also boost the reputation and revenue of the community hospitals.

But there could be a downside: “I do worry about the fact that there are a limited number of children’s specialists. They are going to be spreading themselves thinner,” Melnick said.

Children’s Hospital Los Angeles is already expanding its partnerships. The CHLA Medical Group now runs the NICU at Providence Holy Cross Medical Center in Mission Hills, and doctors from Children’s will be at Providence St. John’s Health Center in Santa Monica starting in January. At both those hospitals, the doctors are contracted to provide the care.

The doctors at Children’s split their time between their own hospital and one of the Providence facilities. Because of the partnership, CHLA Medical Group is hiring more neonatologists.

At Providence Tarzana, the newborn intensive care unit has 21 beds. One morning in October, only eight of them were in use. Isaac, who has been there since his birth in May, was the oldest patient there. He had his own room, where small Nemo and Dory stuffed animals hung from a monitor on the crib.

Since Isaac’s arrival, he has undergone several surgical procedures and received food and medicine through tubes. He’s grown to almost seven pounds, but he still needs to gain more weight.

Nurse manager Michele Lavin told Isaac’s mom that she didn’t know when he would leave the NICU. “Every day he gets stronger,” Lavin said. “We will see how he does. He’ll let us know.”

Lavin said having new doctors from Children’s has changed the culture at the Tarazana hospital. But she said she appreciates the collaboration, teaching and around-the-clock coverage by physicians.

Before, nurses often had to call a doctor to come in if something happened in the middle of the night, Lavin said. “A lot more of it was on the registered nurses and respiratory therapists to keep the baby stable until the doctor got in here.”

The partnership has raised the quality of care at the Providence Tarzana hospital, Chief Executive Dale Surowitz said. For example, unnecessary use of antibiotics and lengths of stay in the NICU have both decreased.

“Having neonatology in-house all the time creates an added level of safety, an added level of enhanced coverage and the ability for us to better address the needs of our patients,” he said.

Avelar said she was grateful Isaac was able to stay at Providence Tarzana after his birth. “I grew up [in the local community],” she said. “My doctors are here. Everything is here.”

But in the end, Isaac couldn’t get everything he needed there — despite the partnership with Children’s. He still couldn’t breathe on his own, and doctors determined he needed specialized surgery on his airway. So just before Halloween, he was transferred to Children’s Hospital Los Angeles.

Chin said that in the “rare instance” when children have a condition that can’t be addressed at Providence Tarzana, as in Isaac’s case, they will be transferred to Children’s.

Avelar said she’s glad her son continues to get the care he needs, though she wishes he could have stayed at Tarzana, where she knew everyone. Children’s Hospital, she said, is “just too big.”

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

By Anna Gorman

A Consumer’s Guide To Medicare’s New Rules On Doctor Pay

A Consumer’s Guide To Medicare’s New Rules On Doctor Pay

The federal government has issued final regulations that reform the way Medicare pays doctors. If the new rules achieve their intended goal, all Americans — and not just Medicare enrollees — could see improvements in the quality of their care.

The regulations, which were issued last month, stem from legislation Congress passed in April 2015 in an unusually strong bipartisan vote. The new payments will begin in 2019, but they will be based on quality measures physicians report starting in 2017.

Overall health care costs are a target of the law, too, and the rate of growth in costs could decline if the law’s mechanisms succeed. But it may be years before the government and researchers know if it is succeeding.

The previous payment formula was ineffective at motivating doctors to practice better medicine at lower cost. At the same time, it angered doctors because nearly every year it threatened to slash their reimbursements.  Congress regularly intervened to prevent that from 2002 to 2015.

Here’s a quick rundown on what the new rules mean for you.

What’s the biggest change? 

The new reimbursement system pegs part of doctors’ fees under Medicare to the quality and efficiency of the care they deliver. It also rewards doctors and other clinicians (physician assistants, nurse practitioners, etc.) who join or create larger organizations that will increasingly be paid overall fees for patient care instead of piecemeal “fee-for-service” payments.

That line item approach may work for car repairs, but in medicine it’s wasteful and promotes excessive and unnecessary care that can actually be harmful, the government contends, and most experts agree.

How will the formula work?

Starting in 2019, doctors who choose not to join larger organizations in 2017 and 2018 — which the government dubs “alternative payment models” — and also don’t participate in reporting quality measures will be penalized 4 percent of the total amount they bill Medicare. If they report a few quality measures, they avoid the penalty and could earn a small bonus. If they participate more substantially, they could earn up to a 4 percent bonus (and more in some circumstances).  Potential penalties and bonuses rise to 5 percent in 2020, 7 percent in 2021, and 9 percent in 2022 and beyond.

Doctors who join alternative payment organizations in 2017 and 2018 that meet certain criteria will get a 5 percent bonus in 2019.

Does the law change Medicare benefits? 

No. Nothing in the new law or rules changes Medicare’s benefit structure or benefits for 2017 and beyond. It also does not affect Medicare beneficiaries’ choice between private insurers’ Medicare Advantage plans and traditional Medicare, nor does it impact benefits under Medicare Part D (prescription drug coverage).

Will I pay more for care? 

In the short run, the new payment system will not affect how much you pay in Medicare premiums or out-of-pocket costs. Beyond 2023, Medicare premiums and copays could be affected by the new rules. The government’s hope is that the annual rate of rise in the cost of care for Medicare patients will be reduced. That could, in the future, translate into lower premiums. If the new system is unsuccessful at restraining costs, premiums and copays will likely rise. 

Does the new system apply to all doctors who see Medicare patients?  

Not initially. Doctors who bill Medicare less than $30,000 or have fewer than 100 Medicare patients per year are exempted in 2017 and 2018.  That’s about 30 percent of doctors who see Medicare patients. The government estimates that some 500,000 clinicians will be eligible for the financial incentive program in 2017 and that between 70,000 and 120,000 will join alternative payment organizations.

Will it be harder to find a doctor who accepts Medicare? 

No. Congress killed the old payment system because some doctors threatened to stop seeing Medicare patients if fees were cut substantially, although few did. The new payment formula, while complex and requiring doctors to adapt, carries much less risk of Medicare dropouts by doctors.

How will actual care be affected? 

Under the new system, doctors will be rewarded if they improve the way they track and manage patients over time; work in teams to make sure patients get the best, most appropriate treatments; use electronic health records; and prioritize wellness and prevention.

Such reforms are being pushed broadly in medicine today, and studies indicate they can improve treatment and keep people healthy — although there’s not universal agreement on which changes and techniques work best.

Paying doctors and medical organizations based on the outcomes of care carries the risk that doctors might avoid very sick and expensive patients. There’s debate over whether the new payment formula adequately limits that risk. Most experts agree, though, that the risk is minimal in the early years of the new program.

How will doctors’ performance and quality of care be measured?

Doctors will get one overall grade and rating. Call it a Grade Point Average (GPA) based on four categories: quality-of-care; practice improvement; adoption and use of electronic health records; and cost (this assessment starts in 2018). Quality of care will represent 60 percent of their score.

Their scores, along with reviews of their Medicare bills and patterns, will dictate whether they get a bonus, no change in payment, or a penalty.

Will I have access to doctors’ grades and ratings? 

Yes. The results will be posted on the website Physician Compare. This site, mandated by the Affordable Care Act, already has some quality ratings for physician groups.

physician-compare-screengrab-770When and in what form the information based on the new payment system will be available online is not yet clear, however. In response to a question, the Centers for Medicare and Medicaid Services, which is administering the new payment system, replied: “We will use statistical and consumer testing for purposes of determining how and where such data will be reported on Physician Compare.”

How will the law affect the health system for people not in Medicare? 

The steps to improve care and constrain cost growth in Medicare is in sync with similar actions in the private sector — by employers, insurers and large health systems. Financial incentives and other rewards, for example, have become common. Plus, almost all doctors who see Medicare patients also see privately insured patients. Thus, the government’s actions are expected to have a spillover effect to medical care for all adults.

Will the Trump administration change or delay MACRA?

It’s hard to say right now. Trump said repeatedly on the campaign trail that he would preserve and strengthen Medicare. Regulations like MACRA that have been through extensive public comment and finalized are not easy to rescind or alter. In addition, Congress passed MACRA with strong bipartisan support. It’s probably unlikely that Trump would see it as a priority to alter MACRA before it begins to be implemented in 2017.

By Steven Findlay

Dementia Rates Decline Sharply Among Senior Citizens

Dementia Rates Decline Sharply Among Senior Citizens

A new study finds that the prevalence of dementia has fallen sharply in recent years, most likely as a result of Americans’ rising educational levels and better heart health, which are both closely related to brain health.

Dementia rates in people over age 65 fell from 11.6 percent in 2000 to 8.8 percent in 2012, a decline of 24 percent, according to a study of more than 21,000 people across the country published Monday in JAMA Internal Medicine.

“It’s definitely good news,” said Dr. Kenneth Langa, a professor of internal medicine at the University of Michigan and a coauthor of the new study. “Even without a cure for Alzheimer’s disease or a new medication, there are things that we can do socially and medically and behaviorally that can significantly reduce the risk.”

The decline in dementia rates translates to about one million fewer Americans suffering from the condition, said John Haaga, director of behavioral and social research at the National Institute on Aging, part of the National Institutes of Health, which funded the new study.

Dementia is a general term for a loss of memory or other mental abilities that’s severe enough to interfere with daily life. Alzheimer’s disease, which is believed to be caused by a buildup of plaques and tangles in the brain, is the most common type of dementia. Vascular dementia is the second most common type of dementia and occurs after a stroke.

The new research confirms the results of several other studies that also have found steady declines in dementia rates in the United States and Europe. The new research provides some of the strongest evidence yet for a decline in dementia rates because of its broad scope and diverse ranges of incomes and ethnic groups, Haaga said. The average age of participants in the study, called the Health and Retirement Study, was 75.

The study, which began in 1992, focuses on people over age 50, collecting data every two years. Researchers conduct detailed interviews with participants about their health, income, cognitive ability and life circumstances. The interviews also include physical tests, body measurements and blood and saliva samples.

While advocates for people with dementia welcomed the news, they noted that Alzheimer’s disease and other forms of memory loss remain a serious burden for the nation and the world.  Up to five million Americans today suffer from dementia, a number that is expected to triple by 2050, as people live longer and the elderly population increases.

The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association.

“Alzheimer’s is going to remain the public health crisis of our time, even with modestly reduced rates,” Fargo said.

Although researchers can’t definitively explain why dementia rates are decreasing, Langa said doctors may be doing a better job controlling high blood pressure and diabetes, which can both boost the risk of age-related memory problems. High blood pressure and diabetes both increase the risk of strokes, which kill brain cells, increasing the risk of vascular dementia.

“We’ve been saying now for several years that what’s good for your heart is good for your head,” Fargo said. “There are several things you can do to reduce your risk for dementia.”

Authors of the study found that senior citizens today are better educated than even half a generation ago. The population studied in 2012 stayed in school 13 years, while the seniors studied in 2000 had about 12 years of education, according to the study.

That’s significant, because many studies have found a strong link between higher educational levels and lower risk of disease, including dementia, Lang said. The reasons are likely to be complex. People with more education tend to earn more money and have better access to health care. They’re less likely to smoke, more likely to exercise and less likely to be overweight. People with more education also may live in safer neighborhoods and have less stress.

People who are better educated may have more intellectually stimulating jobs and hobbies that help exercise their brains, Lang said.

It’s also possible that people with more education can better compensate for memory problems as they age, finding ways to work around their impairments, according to an accompanying editorial by Ozioma Okonkwo and Dr. Sanjay Asthana of the University of Wisconsin School of Medicine and Public Health.

Yet Americans shouldn’t expect dementia rates to continue falling indefinitely, Haaga said.

Although educational levels increased sharply after the World War II, those gains have leveled off, Haaga said. People in their 20s today are no more likely to have graduated from college compared to people in their 60s.

“We have widening inequality in health outcomes in the U.S.,” Haaga said. “For people without much education, we’ve had very little improvement in health. The benefits really have gone to those with better educations.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation, and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

By Liz Szabo

Clinics Help Keep People With Serious Mental Illness Out Of ER

Clinics Help Keep People With Serious Mental Illness Out Of ER

Yolanda Solar has battled a life-threatening disease for more than three decades.

The disease nearly killed her last summer, and Solar, a 73-year-old grandmother, was rushed to the hospital by ambulance.

When Solar was discharged one week later, she received bad news: She would have to wait until March to see a doctor.

Waiting seven months for treatment would be unthinkable if Solar had cancer or heart disease. But Solar suffers from severe depression, and waiting that long for help is typical — and potentially dangerous.

Although San Antonio has earned widespread praise for its success in keeping people with mental illness out of jail, patients here routinely wait months to see psychiatrists, who are in short supply across the country. The number of available psychiatrists who specialize in the care of the elderly or children is even smaller.

Without routine medical care, patients like Solar, who tried to kill herself in August with an overdose of pills, can quickly deteriorate. Many return to the emergency room. Some don’t survive.

But Solar was luckier than most.

Emergency room staff made an appointment for her at a transitional care clinic at the University of Texas Health Science Center at San Antonio, which annually treats up to 1,500 patients with serious mental illness until they can find regular care. The clinic helps the mentally ill avoid winding up in the ER, where round-the-clock activity and confusion is ill-suited to the needs of patients who are already agitated, suicidal or psychotic.

Communities like San Antonio are increasingly focused on reducing emergency room use by people with mental illness. In addition to being chaotic, emergency rooms are among the most expensive places in the health system to get urgent care.

Patients like Solar end up in the ER because they can’t find care in the community, and emergency rooms can’t legally turn anyone away. The mentally ill can be stranded in the ER for hours, days or even weeks with minimal treatment, because doctors deem them too disabled to discharge, but can’t find them an inpatient psychiatric bed, which would allow patients to get more intensive care.

More than half of emergency room physicians said their local mental health system has gotten worse in the past year, according to a survey of 1,716 members of the American College of Emergency Physicians, released in October. Seventy-five percent of ER doctors said on their last shift, they saw at least one psychiatric patient who needed to be hospitalized.

“The emergency department becomes the de facto dumping ground for all mental health patients,” said Gillian Schmitz, a San Antonio emergency physician.

The number of ER patients with a mental illness grew from 4.4 million in 2002 to 6.8 million in 2011, an increase of 55 percent, according to a 2016 study in Health Affairs. About 836,000 Americans a year go to the emergency room after harming themselves, according to the Centers for Disease Control and Prevention. Nearly 43,000 Americans committed suicide in 2014 — more than are killed annually in car accidents.

The American College of Emergency Physicians devoted much of its annual meeting in October to patients with psychiatric crises.

Everyone suffers when people with mental illness are stuck in limbo in the ER, Schmitz said. Other patients face longer waits for care and hospitals lose money. That’s because insurers pay emergency rooms only for their initial encounter with a patient, but not for time spent waiting for an inpatient bed.

“Every hour we are holding a psych patient,” Schmitz said, “is lost revenue that hospitals could be earning on other medical patients.”

Personalized care

Solar’s story also shows the progress that people with mental illness can make when they receive prompt and comprehensive care. She has not returned to the ER since beginning treatment in August.

Hospital staff scheduled her appointment at the transitional care clinic through a web-based computer system before she left the hospital. Like most patients, Solar was seen within a few days.

Solar now meets regularly with a psychiatrist, who manages her medications, and a counselor to discuss her fears.

A therapist visits her at home to help organize her medications, which include pills for high blood pressure and cholesterol. The visits are paid for through a Medicaid pilot program, which allows staff to provide extra services for up to five patients who are considered “high utilizers” of health care, or patients who are particularly costly to insurers because of repeat trips to the hospital or ER, said Megan Fredrick, the clinic’s program manager.

Patients with serious mental illness, which can cause cognitive changes similar to dementia, often need help with day-to-day tasks, said psychologist Dawn Velligan, project director at the transitional care clinic. Therapists help patients set alarms that remind them when to take their medicines. They work with patients on calendars and organizational skills, so that clients don’t miss appointments.

Through a type of therapy called cognitive adaption training, clinic staff teach basic skills, such as how to shop for groceries or take the bus to a medical appointment, Velligan said.

Only 2.5 percent of psychiatric patients seen at the transitional care clinic return to the ER within three months, compared to 10 percent of patients who aren’t seen at the clinic, Fredrick said.

Without the clinic’s help, Solar said, she would probably have considered suicide again.

“Sometimes, I get pretty, pretty, pretty depressed,” said Solar, who was raised by an alcoholic father. Her depression began, Solar said, during an unhappy marriage.

Yet for years, Solar suffered in silence. The first time she saw a psychiatrist was after her August suicide attempt.

Nationwide, more than half of people with mental illness go without treatment, according to Mental Health America, an advocacy group. The reasons are complex. Many people with mental illness don’t realize they’re sick, or that treatment can help.  Some patients lack transportation or money to pay for care. About 17 percent of people with a mental illness in the U.S. are uninsured, according to Mental Health America.

“For many of our elderly Hispanic patients, this is the first time they’ve seen a therapist,” Cynthia Sierra, a clinic counselor. “You’re raised not to talk about your problems with strangers … You can carry years of burdens and trauma.”

Unsolved problems

For all its success, the transitional care clinic can’t help everyone.

With an annual budget of $3.5 million — provided by a variety of grants and a fund for Medicaid demonstration projects — the clinic sees just a fraction of those who need help.

“We constantly have to beg for money,” Velligan said.

Although the transitional clinic accepts patients covered by Medicare, Medicaid or private insurance, it can’t accept most uninsured patients.

Psychiatrist Harsh Trivedi describes the program as a “Band-Aid” that fails to address the larger problem of inadequate care for people with mental illness.

“Unfortunately, creating these programs doesn’t actually solve the real access issues,” said Trivedi, chair of the American Psychiatric Association’s council on healthcare systems and financing.

Trivedi notes that the national shortage of psychiatrists means that even well-insured patients often have to wait for care. Although the overall number of physicians increased 14 percent from 2003 to 2013, the number of psychiatrists fell by 10 percent when adjusted for population growth, according to a July study in Health Affairs.

That shortage is projected to worsen over the next decade as large numbers of psychiatrists reach retirement age, said Trivedi, who is also the president and CEO of Sheppard Pratt Health System in Maryland.

Many psychiatrists have stopped taking insurance because health plans pay them too little to sustain a practice, Trivedi said.

To really help more patients, the country needs to rebuild the mental health system, investing both in outpatient care, more hospitals beds and supportive services, Schmitz said. Instead, states have been steadily slashing mental health budgets for years.

“As a society, we’re OK with the fact that someone with depression isn’t able to get care,” Trivedi said. “That double standard allows some of our most vulnerable people to end up in harm’s way.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

By Liz Szabo

Insurance Pools For High-Risk Patients Could Be Revived

Insurance Pools For High-Risk Patients Could Be Revived

It wasn’t so long ago that health insurance horror stories fueled discussions around the family dinner table and the national debate over health care reform.

“One company said I was too heavy,” said Scott Svonkin, of Los Angeles, of the time he was denied an individual health policy in 2005. Svonkin, 50, said two other insurers seemed OK with his weight but also turned him down, citing his asthma and his wife’s pregnancy, which could put the insurers on the hook for a dependent whose health was uncertain.

“I was horrified that insurance companies would turn me down,” said Svonkin, who now works for the L.A. county assessor and is chairman of the County Commission on Insurance.

Scott Svonkin, pictured here with his newborn son, Sam, in 2006. Svonkin says he was denied health insurance three times before changes under the Affordable Care Act. He found health coverage in a high-risk pool. (Courtesy of Scott Svonkin)

Scott Svonkin, pictured here with his newborn son, Sam, in 2006. Svonkin says he was denied health insurance three times before changes under the Affordable Care Act. He found health coverage in a high-risk pool. (Courtesy of Scott Svonkin)

Svonkin did get coverage, however, thanks to a state-run “high risk” health insurance program, created for people who couldn’t get insurance because of preexisting conditions such as a past illness or a chronic disease. Thirty-four other states created similar programs, which have since dwindled or dissolved because the Affordable Care Act required health insurers not to exclude people based on their health status. The pools used state money, such as tax revenue or private insurer fees, to pay for their care.

Now President-elect Donald Trump and Republican Congressional leaders say they want to revive high-risk insurance pools for the sick or uninsurable.

But some California health officials and policy experts say that would be a big step backward — to a state program that offered long waits for coverage, high prices, limited benefits and few health plan choices.

“People would literally pass away while they were on the waiting list,” said Richard Figueroa, who was one of the original staff members of California’s program, the Major Risk Medical Insurance Program (MRMIP), when it started in the early 1990s. Later, he served on the governing agency’s board before it was dissolved under the Affordable Care Act.

The program never had enough money to cover the need among the uninsured, Figueroa said. It had a $30 to $40 million budget in a given year, mostly from tobacco tax revenue. Figueroa said the limit on how many people could enroll declined over the years in part because costs kept rising. In 2011, fewer than 7,000 people were enrolled.

In the 1990s, thousands of people languished on waiting lists, Figueroa said. When their turn came for coverage, some people found they couldn’t afford the monthly premium.

“We never advertised. Because why would you advertise something that wasn’t available?” said Figueroa, now the director of health and human services for the California Endowment. (The endowment provides funding to Kaiser Health News, which produces California Healthline.)

“We were a stopgap, we were a holding place, a waiting area,” said Figueroa. “We were always hoping [the program] would go away with the advent of national insurance reform,” he said.

 

More than half of state high-risk insurance pools have closed in the past few years, according to data from the National Association of State Comprehensive Health Insurance Plans (NASCHIP). In other state-run high-risk pools, new enrollment has stopped and overall participation has dropped, the data showed. Premiums ranged from 125 to 200 percent of the average individual market rate in a given state, according to NASCHIP.

California’s program is still puttering along, with fewer than 1,600 enrollees and an $11 million-plus budget last fiscal year. Some remaining enrollees have end-stage kidney disease, a condition commercial insurers are not required to cover, according to California’s Department of Health Care Services. Members must choose between two different health insurance carriers, in contrast to Covered California enrollees, who have as many as five choices in some areas.

“High-risk pools segregate sick people into plans that are more expensive to both the government and the individual,” said Anthony Wright of Health Access, a coalition of consumer advocates.

Wright said the high-risk pools were among the “failures” in the health care system that led to Obamacare.

2011 study of Minnesota’s high-risk pool, one of the oldest and largest in the country, suggested that spending on enrollees increased over time. Keeping program costs down was also a challenge, it noted, as was securing ongoing public funding.

California’s program had strict limitations — a $75,000 annual maximum on health claim payouts, with a $750,000 lifetime maximum.

People with hemophilia would often exceed the lifetime maximum and not be able to get further coverage, said Cheryl Fish-Parcham, private insurance program director for the advocacy group Families USA.

Around the country, rules about benefits and who could qualify for the high-risk pools varied, Fish-Parcham said. In some states, enrollees couldn’t obtain coverage for a certain amount of time for some health conditions if they had been previously uninsured. Not all states had waiting lists.

California’s Senate Health Committee chair, Ed Hernandez (D-West Covina), who helped create the state’s legislative framework for Obamacare, said high-risk pools are neither efficient nor humane.

“Why would you go back to a system that discriminates against patients?” he said.

Any bill to expand California’s high-risk pool would have to go through his committee and he wouldn’t support it, Hernandez said.

President-elect Donald Trump’s transition website said his administration “will work with both Congress and the States to re-establish high-risk pools.” It’s not clear how much authority states would have in implementing — or rejecting — such a change.

Congressional Republicans hope to pump life back into state high-risk pools with $25 billion in federal money. U.S. House Speaker Paul Ryan proposes that premiums in state programs be capped and wait-lists be “prohibited.”

Dean Clancy, a former Republican health policy analyst for President George W. Bush, acknowledges the programs have struggled in the past but says if revived with the funding proposed by Speaker Ryan, they would be more viable.

“The ideal health insurance market would be based on medical risk,” Clancy said.

He explained that in an ideal system, people would pay according to the likelihood their health status would create costs for the insurers. Using government funds to help cover a small proportion of uninsurable people, Clancy said, “leaves the rest of the market free to operate according to normal insurance principles.”

High-risk pools are a form of charity, said Clancy, and he doesn’t see them as discriminatory.

“Is welfare discriminating against people with low incomes? High-risk pools are trying to help people, not hurt them,” said Clancy.

Patients offer mixed reviews of the high-risk pools.

“It was very limited,” said Svonkin about the number of health plans he could choose from. “But I felt lucky to have insurance.”

Linda Carmi of Palm Desert, who was unemployed after recovering from breast cancer in the early 1990s, also said she felt lucky to get any coverage at all.

“I thought it was really a great find,” said Carmi, 65, a now-retired ultrasound technician who is covered by Medicare. She noted that coverage in the high-risk pool was “decent” but expensive. Her husband’s income helped pay for it.

“It worked well at the time, because I made it work,” she said. But Carmi added that she was always “very, very careful” not to exceed the lifetime limit on benefits.

But until all politicians are subject to the health care system people like her have experienced for the past 25 years, Carmi said, “I don’t see a solution coming from Washington.”

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

By Pauline Bartolone

Senate Approves Landmark Mental Health Bill As Part Of 21st Century Cures Act

Senate Approves Landmark Mental Health Bill As Part Of 21st Century Cures Act

The Senate passed the first major mental health legislation in nearly a decade, sending the 21st Century Cures Act to President Barack Obama, who has promised to sign it.

The Senate voted 94-5 to approve the act, which sailed through the House of Representatives last week. Although the 21st Century Cures Act has been championed as a way to speed up drug development, it also includes provisions aimed at improving mental health care for millions of Americans and fighting the opioid epidemic. Mental health advocates have described it as the most significant piece of mental health legislation since the 2008 law requiring equal insurance coverage for mental and physical health.

The new legislation places a strong emphasis on science, pushing federal agencies to fund only programs that are backed by solid research and to collect data on whether patients are actually helped. The bill strengthens laws mandating parity for mental and physical health care and includes grants to increase the number of psychologists and psychiatrists, who are in short supply across the country.

The bill, which combines mental health proposals from several lawmakers, also pushes states to provide early intervention for psychosis, a treatment program that has been hailed as one of the most promising mental health developments in decades.

“It is time to fix our broken mental health care system,” said Sen. Bill Cassidy, R-La., a physician whose mental health bill was folded into the 21st Century Cures Act.

Sen. Chris Murphy, D-Conn., who worked with Cassidy on the bill, said he hopes to alleviate the suffering of people with serious mental illness.

“I’d heard too many devastating stories of people struggling with serious mental illness and addiction whose lives were forever changed because they couldn’t get the care they need,” Murphy said. “I’d seen up close the heartbreak and frustration that families suffered trying to find care for a loved one — care that seemed impossible to find and even harder to pay for.”

But Rep. Frank Pallone, D-N.J., said he’s concerned that proposed Republican changes to the health care system could undercut any progress made by the bill. Millions of Americans with mental illness could lose coverage if Congress repeals the Affordable Care Act or cuts spending on Medicaid, which pays for about 25 percent of all mental health care, he said.

“The benefits of the mental health bill will be far outweighed by the catastrophic harm caused to individuals with mental illness if the Republicans move forward with their radical plans to repeal the Affordable Care Act, block grant Medicaid and cut benefits for low-income individuals,” Pallone said.

Many mental health advocates celebrated the bill’s passage.

Ronald Honberg, national director of policy and legal affairs at the National Alliance on Mental Illness, called the bill’s mental health provisions “necessary and promising.” He said he appreciated the bill’s focus on “preventing the most horrific consequences of untreated mental illness,” including homelessness, incarceration and suicide.

The bill generally requires states to use at least 10 percent of their mental health block grants on early intervention for psychosis, using a model called coordinated specialty care, which provides a team of specialists to provide psychotherapy, medication, education and support for patients’ families, as well as services to help young people stay in school or their jobs. Research from the National Institutes of Health shows that people who receive this kind of care stay in treatment longer; have greater improvement in their symptoms, personal relationships and quality of life; and are more involved in work or school compared to people who receive standard care.

The bill also sets up a $5 million grant program to provide assertive community treatment, one of the most successful strategies for helping people with serious mental illnesses, such as schizophrenia. Like the early intervention program, assertive community treatment provides a team of professionals that is on call 24 hours a day. The bill also expands a grant program for assisted outpatient treatment, which provides court-ordered care for people with serious mental illness who might otherwise not seek help.

Although the bill authorizes these grants, a future Congress would have to approve funding for the programs. “The fact that a program has been authorized is no guarantee that it will be funded,” Honberg said. “It’s a necessary first step.”

Mental health advocates will lobby for Congress to approve funding for the most critical programs, Honberg said.

While funding treatments for mental illness is expensive, “it’s more expensive to ignore it,” said Rep. Eddie Bernice Johnson, D-Texas, who co-sponsored mental health legislation in the House that folded into the 21st Century Cures Act.

Other sections of the bill, based on legislation introduced by Sen. John Cornyn, R-Texas, give communities more flexibility in how they use federal grants. For example, communities could use community policing grants to train law enforcement officers to deal with patients in the midst of a psychiatric crisis. Another provision would require the U.S. attorney general to create at least one drug and mental health court pilot program, which would aim to help people with mental illness or drug addiction receive treatment, rather than jail time, after committing minor offenses.

The legislation will help “those suffering from mental illness in the criminal justice system can begin to recover and get the help they need instead of just getting sicker and sicker,” Cornyn said. “This bill also encourages the creation of crisis intervention teams, so that our law enforcement officers and first responders can know how to deescalate dangerous confrontations. This is about finding ways to help the mentally ill individual get help while keeping the community safe at the same time.”

The mental health provisions have been scaled back significantly since they were first introduced.

An earlier version of a bill introduced in the House of Representatives would have changed a federal privacy law to allow doctors, under certain circumstances, to share mentally ill patients’ medical information with their family caregivers. Doctors today often shut families out of their loved one’s care, refusing to share even basic information, such as appointment times, for fear of violating the Health Insurance Portability and Accountability Act, or HIPAA.

Many health professionals misunderstand HIPAA, refusing to listen to the families of patients who are too disabled by psychosis to provide key details of their medical history, said Rep. Tim Murphy, R-Pa., who first introduced the House bill in 2013 in response to the shootings at Sandy Hook Elementary School in Newtown, Conn.

Some advocates for the disabled objected to that change, however, arguing that patient privacy is essential, and that people might avoid care if they believe their doctors might disclose confidential information.

The new bill instructs the secretary of the Department of Health and Human Services to clarify when doctors can share patients’ medical information with family caregivers, as well as educate health care providers about what the law actually says.

“It’s a step in the right direction,” Honberg said. “There is so much misinformation about HIPAA. It’s one of the most mischaracterized laws out there.”

The bill also aims to better coordinate mental health care. Although eight federal agencies today fund 112 programs that provide mental health care, these agencies rarely coordinate their efforts to make sure patients get the help they need and to avoid duplicating services, said Tim Murphy.

The bill would make structural changes to the way federal agencies provide mental health services.

  • A new committee would link leaders of key agencies involved in mental health care, such as the Department of Veterans Affairs, the Department of Justice and the Substance Abuse and Mental Health Services Administration, or SAMHSA.
  • A new position — the assistant secretary for Mental Health and Substance Use — would oversee SAMHSA and disseminate the most successful approaches to treating mental illness.
  • An advisory board, the National Mental Health and Substance Use Policy Laboratory, would also analyze treatments and services to help decide which ones should be expanded.

Chris Murphy said he wishes the final bill had included more resources for outpatient mental health care, as well as inpatient hospital bills for people in psychiatric crisis. He also said the current bill provides a starting point but that he hopes Congress will continue working to improve mental health care in its next session.

“This doesn’t solve all the problems in the mental health system,” said Chris Murphy, noting that Congress may still need to change the HIPAA law to allow families to better care for people with mental illness. “We may still have to look at this down the line.”

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

By Liz Szabo

Long-Stalled FDA Reform Sits On Senate’s Lame-Duck Calendar

Long-Stalled FDA Reform Sits On Senate’s Lame-Duck Calendar

Republicans in Congress are pushing to pass long-stalled legislation by January that gives the Food and Drug Administration new powers to more rapidly approve drugs and medical devices.

Over five years, the complex legislation would include $550 million in additional funding for the agency, as well as $1.75 billion annually in added spending for the National Institutes of Health.

The bills have had bipartisan support in Congress during the past two years. They’re backed by the pharmaceutical and device industries as well as hundreds of patient support groups, academic institutions and medical schools.

This “is a once-in-a-generation opportunity to change the way we view and treat disease,” said Rep. Fred Upton, R-Mich., who has been a key advocate on Capitol Hill. “Patients can’t wait any longer. It’s time to deliver.”

But legislative wrangling and concern among consumer and public health groups could still thwart the effort.

The legislation would “lower safety and approval standards for drugs and medical devices” and should “not be rushed into law in the final brief weeks of this Congress,” one coalition of opponents, which includes Breast Cancer Action and the National Women’s Health Network, said in a Nov. 8 letter to senators.

The House is further along, having passed its 350-page 21st Century Cures Act in July 2015. The Senate’s version is 19 separate bills that were approved in committee this past spring but never voted on by the full Senate. Tuesday congressional staffers reported steady progress and said that a House-Senate compromise bill could emerge from the negotiations, to be voted on by both chambers in coming weeks.

Backers say the measures would speed the FDA’s approval process by allowing it more flexibility in evaluating the effectiveness and safety of drugs and devices. The increased funding would enable the agency to hire additional staff at salaries competitive with the private sector and academia — an issue that has vexed the FDA for years. The agency has more than 700 vacancies in the division that approves new drugs, for example

Rigorous standards for drug and device approval and safety would be preserved, proponents insist.

The bills also would give the agency more power to provide newer drugs to terminally ill patients. And they would allow the FDA to create a new approval pathway for antibiotics and economic incentives for developing new antibiotics.

“Let’s do it now,” said Marc Boutin, CEO of the National Health Council, a nonprofit that represents about 50 patient-support and disease organizations and gets funding from drug and device companies. “This legislation will enhance research, speed cures to market and benefit public health.”

The Obama administration had previously been supportive of lawmakers’ work, as long as the final package were to include funding for its “cancer moonshot” and Precision Medicine Initiative. The White House Tuesday declined to comment on the legislation’s current progress.

Some congressional leaders say the legislation is an opportunity for Republicans and Democrats to show they can work together after a divisive election. Senate Majority Leader Mitch McConnell, R-Ky., and House Speaker Paul Ryan, R-Wis., said earlier this month that the measures are a priority during the lame-duck session.

“Congress should not squander this rare opportunity to get a result on behalf of millions of patients who are waiting for us to deliver on the promise of 21st Century Cures,” Sen. Lamar Alexander, R-Tenn., said in a statement. Alexander chairs the Health, Education, Labor & Pensions (HELP) Committee and has led the Senate’s supporters.

But Sen. Patty Murray, D-Wash., the committee’s ranking member, and other Democrats are pushing for even broader legislation. They would include more funding for opioid addiction treatment under a law passed in July and mental health reform approved in the House and by the HELP committee but not yet taken up by the full Senate.

Both could complicate agreement on FDA changes and NIH funding, essentially making the bill into an omnibus health care measure. Paying for the legislation remains an issue; the House would fund it partly by selling oil from the nation’s Strategic Petroleum Reserve. Republicans in the past have insisted that the final package’s cost be fully offset and subject to annual appropriations. Democrats have balked at that and argued for a firmer long-term funding commitment.

Meanwhile, some Senate Democrats have also reportedly asked for a larger increase in FDA resources than the House bill proposes, arguing that $550 million over five years is not enough to cover the agency’s greater responsibilities.

The intricacies of drug and device development and regulation make the legislation necessary, its proponents say. Drugs can take years to come to market in large part because pharmaceutical companies must conduct detailed studies of their effectiveness and safety in patients. While that system would be preserved, the bills would clear the FDA for considering less burdensome criteria to approve drugs that show special promise.

The path also would be made easier for new indications of previously approved drugs. The agency would be able to use evidence from doctors’ clinical experience, for instance, along with less detailed studies.

But opponents contend the legislation could result in drugs and devices reaching the market without thorough evaluations. And they are concerned that the House bill gives some brand-name drugs longer periods of market exclusivity, thus slowing the availability of less expensive generic drugs and, as one consumer coalition asserted, denying “patients access to affordable, life-saving medicines.”

Sarah Sorscher, an attorney at Public Citizen’s Health Research Group, said that although the watchdog organization supports additional NIH funding, “the Cures Act raises the risk that bad products will come to market and patients will be harmed.”

Opponents also want Congress to hold off on the legislation until next year so that lawmakers can simultaneously debate and address ways to fight rising drug prices.

“It is critical that any legislation making changes to drug policies take steps to rein in the cost of prescription drugs,” the AFL-CIO, Alliance for Retired Americans and Consumers Union wrote in an Oct. 26 letter to the Senate and House Democratic leaders.

In a strange-bedfellows scenario, the groups may have a possible ally in President-elect Donald Trump. Trump’s website lists FDA reform as a priority, and according to statements he made on the campaign trail, he supports curtailing drug prices, possibly through government negotiation with the pharmaceutical industry.

The National Health Council’s Boutin said waiting until 2017 could risk progress made to date on the bills, after two years. “Adding the drug price issue to deliberations is not going to be productive,” he said. “We support addressing that in the future but not in the context of this legislation now.”

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

By Steven Findlay

Community Paramedics Work To Link Patients With Mental Health Care

Community Paramedics Work To Link Patients With Mental Health Care

For Kelly Kjelstrom, plugging the gaps in mental health care can mean something as simple as a late-night taco and a friendly chat.

Kjelstrom, 45, is a community paramedic in Modesto, California. Part of his job is to help psychiatric patients in need of care avoid winding up in the emergency room, where they can get “boarded” for days, until they are released or a bed frees up at an inpatient facility.

Here’s how the concept of community paramedics works. When the local 911 system comes upon a patient with a potential mental health crisis, these specially trained paramedics are dispatched to the scene. They’ve learned to identify problems, intervene and de-escalate the situation.

After a physical assessment, paramedics like Kjelstrom talk to the patient — to figure out what, precisely, the issue is, asking also about issues like a patient’s mental health history, drug use and insurance status. They use that information, along with details about resources available, to figure out the next steps for the patient — maybe it is a hospital or a psych facility, or maybe it is outpatient care.

Increasingly, these paramedics also become involved in follow-up. Kjelstrom estimates that, on visits, he spends twice as long with patients as he used to. He builds relationships with them. While out on duty, if he runs across a familiar face, he stops and checks in. Like over a night-time snack.

“One of the patients we see on a regular basis,” Kjelstrom said. “I buy him a taco, no big deal, and I remind him to take his meds.”

That simple interaction, he said, can keep someone out of the ER, and on the path to better health.

The Modesto pilot program launched a year ago. Similar projects are also underway in North Carolina, Minnesota, Texas, Colorado and Georgia. Other states, such as Washington and Nevada, have shown interest.

“Emergency departments are bursting at the seams,” said Kevin Mackey, medical director of the Mountain Valley EMS agency, who launched the Modesto initiative, which has now been operating for a year. “This is at least a partial answer to giving people care in the right place at the right time.”

Those efforts come as the issue of mental illness, which affects about 1 in 4 adults, continues to be a national concern and cases like October’s police shooting of a woman with schizophrenia in New York spark conversation about ways to better reach these patients.

“If we could coordinate care — if we have the right medications and the right coordinating approach to these patients, we can avoid shooting people,” Mackey added.

Jurisdictions are beginning to see the benefits.

In Wake County, North Carolina, for instance, a third of mental health-related 911 calls are now sent to specialized psychiatric facilities, said Michael Bachman, deputy director at the county’s Office of Medical Affairs. That’s about 350 patients a year who would otherwise have gone to the emergency department.

But patients can only be connected with the treatment they need if there are doctors or treatment sites available. Often, they aren’t.

In addition, no one has been able to track whether these patients stay healthier, Bachman acknowledged.

And that’s in part because of another issue. Paramedics can only redirect patients from the ER if there’s somewhere else to take them and if they’ll get proper follow-up care after. Far too often, experts said, that isn’t the case.

“This works,” Bachman said. “But the thing that has to improve is there has to be more access to places for patients to go.”

In Modesto, Kjelstrom will see patients who would most benefit from a short stay in a dedicated mental health facility. But he’ll often run up against the issue that the local centers just don’t have enough beds to take patients in need. That limits how effective he can really be, he said.

The thing that has to improve is there has to be more access to places for patients to go.

Michael Bachman

Mackey said he estimates 30 percent of the time that patients needed to go to an inpatient facility, there wasn’t a bed available. It’s a similar story elsewhere. For Atlanta-based Grady Health System, which launched a paramedic program in 2012, finding available bed-space remains “a pretty big challenge,” said Michael Colman, the system’s vice president of EMS operations.

And then there’s follow up.

“If we’re talking about using community paramedics — or social workers, or some other community organization — to connect people with behavioral health care services, [these kinds of barriers] are an issue,” said Kate Blackman, senior policy specialist for the health program at the National Council of State Legislatures.

Even so, experts said, it’s a promising first step.

“We’re moving in the right direction with programs like these,” said Karen Shore, a principal at the California-based consulting firm Transform Health. “It isn’t solving all of our health system problems. But that’s not a fair expectation.”

By Shefali Luthra

Uncertain Fate Of Health Law Giving Health Industry Heartburn

Uncertain Fate Of Health Law Giving Health Industry Heartburn

Six years into building its business around the Affordable Care Act, the nation’s $3 trillion health care industry may be losing that political playbook.

Industry leaders, like many voters, were stunned by the election of Donald Trump and unprepared for Republicans’ plans to “repeal and replace” Obamacare.

In addition, Trump’s vague and sometimes conflicting statements on health policy have left industry officials guessing as to the details of any substitute for the federal health law.

“It will be repealed and replaced,” Trump said in a Nov. 13 interview on CBS’ “60 Minutes.” At the same time, he vowed to preserve popular provisions of the law like ensuring that people with preexisting conditions can get insurance and allowing young adults to stay on their parents’ health plans.

Charles (Chip) Kahn, chief executive of the Federation of American Hospitals, said that before the election, health groups had not been meeting with Republicans about a rewrite of the law “because the working assumption was we had a program that wasn’t going anywhere. That working assumption is now no longer operative.”

Upending the health law plays havoc with a health industry that had invested heavily in strategies geared to the ACA’s financial incentives. The flipped script initially left some industry groups speechless. Others issued bland statements pledging cooperation with the next administration as they awaited greater clarity from the next president.

Said Donald Crane, who heads CAPG, a national trade group for physician organizations: “Nobody was ready for this. We didn’t have a Plan B.”

The results appear to have rattled the fragile industry coalition that the Obama administration carefully crafted to support the law. Looking ahead, some health sectors might have even more reason to worry.

The hospital industry may be the most vulnerable to proposed changes, which could result in millions of Americans losing health coverage, both through the insurance exchanges and expansion in the Medicaid program for those with lower incomes.

Hospitals cut a deal with Congress and the Obama administration in 2009, when the Affordable Care Act was being drafted. They agreed to substantial cuts in Medicare and Medicaid reimbursement, anticipating that those cuts would be offset by increases in paying customers who were newly insured.

“If you’re a hospital, you’ve sort of made this deal that you’re going to get more coverage [so you] accepted Medicare cuts,” said Dean Rosen, a longtime Republican congressional staffer who now represents hospital, insurance and other health interests in Washington. “What’s going to happen now?”

If expanded coverage under Obamacare goes away, said Kahn, then those cuts should be restored, “because those were done with the notion that uninsured people were going to have coverage.”

Other sectors of the industry appear either at somewhat less risk, or could even come out ahead under Trump and a Republican Congress.

While the pharmaceutical industry would stand to lose paying customers if the law was changed in a way that people lose insurance coverage, it could actually be a winner under a Republican president and Congress. That’s because the industry will be less at risk of the price controls that Democrats were vowing to try to impose. Trump mentioned drug prices a few times on the campaign trail, but references to drug pricing are not on the health agenda outlined on the transition website.

Insurers express mixed feelings about a potential repeal. The government-run exchanges where consumers can purchase federally subsidized coverage are a key pillar of Obamacare. But many insurers have complained about losing money in those marketplaces because too many sick people are signing up and healthier consumers are sitting out.

Some industry executives predict that the exchanges will be curtailed and Republicans will try to shift some of that coverage to state Medicaid programs. One of the biggest growth opportunities for insurers under Obamacare has been the expansion of Medicaid managed-care contracts under which private firms take responsibility for a large group of low-income enrollees for a fixed amount of money.

That privatization of Medicaid could accelerate under the Trump administration, some experts predict.

“Whether it’s Medicaid managed care or the private insurance model, these companies get their money either way,” said Paul Ginsburg, a health economist and professor at the University of Southern California. “I don’t see much of a threat to insurers.”

The picture is even rosier considering the insurance industry dodged a debate about a government-run public option, backed by Democratic presidential nominee Hillary Clinton, that would have competed directly against private health plans.

The proposed changes extend beyond the health law. Many insurers expect Republicans to champion an expansion of privately run Medicare Advantage plans. These alternative plans often offer additional health benefits not covered by traditional Medicare, but they were targeted in the health law for cutbacks because back then they were more expensive to the government than traditional Medicare.

“Medicare Advantage is poised to be the big winner consistent with Republican support of privatizing Medicare,” said Ana Gupte, a health care analyst at Leerink Research.

Nothing on health care is bound to change right away. Republicans have promised to put their early focus on the health law, but even with a quick vote on repealing major parts of it, they are expected to set a lengthy transition period that keeps the current framework in place while a replacement plan is developed. At that point, Republicans will encounter many of the tough choices Democrats struggled with while writing the landmark 2010 health law. They spent more than two years trying to craft intricate compromises among industry leaders.

“The Republicans will face the same issues as the architects of the Affordable Care Act,” said Crane. “How do we fund it? Whose scalp do you take? And how do you get the most people covered for the lowest cost at the highest quality?”

Jeff Goldsmith, a health industry consultant in Charlottesville, Va., said the Republicans are “starting from zero in dealing with this. They have no idea about the subtleties.”

Some industry leaders are encouraged that Trump has softened his talk of “repeal and replace” and seems open to keeping at least some of the provisions of the health law.

Bernard Tyson, CEO of Kaiser Permanente, a large health system and insurer based in Oakland, Calif., took some comfort from Trump’s own words.

He “said no one in this country should suffer unnecessarily because they can’t afford health care. That tells me we have room to work here,” Tyson said. “I believe when they get under the hood of the Affordable Care Act, I think we may start to see and hear different conversations.”

Ginsburg predicts that Trump might apply his marketing skills to health reform.

“If you really want to continue with 20 million people having coverage,” Ginsburg said, “it will kind of look like the Affordable Care Act. There will be rebranding, but a lot of the elements will remain.”

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

By Julie Rovner and Chad Terhune

Many Caregivers Spend $7K Annually Out Of Pocket

Many Caregivers Spend $7K Annually Out Of Pocket

Denise Sleeper has sold her home, spent most of her retirement savings and quit her job to care for her husband since his Alzheimer’s disease struck two years ago.

“It’s been like a tsunami in my life,” said Sleeper, of Gilford, N.H.

She’s drained $168,000 from the couple’s retirement account since her husband, Scott, was diagnosed with the degenerative illness. At first, she cared for him at home, but he’s in a nursing home now. Sleeper gets by on his disability checks and the $32,000 left in their 401k.

Stories like those are common among the nation’s 40 million family caregivers whose out-of-pocket costs are under-recognized, according to an AARP survey out Monday.

More than 3 out of 4 caregivers absorb out-of-pocket costs currently averaging nearly $7,000 a year, AARP found. Those costs consumed the equivalent of a fifth of caregivers’ incomes on average — and the burdens were even greater for those with lower incomes, the group reported. The most financially strapped caregivers tap savings or take out loans to meet expenses.

AARP conducted its survey of 1,864 family caregivers in July and August. Participants also kept diaries tracking their personal spending.

“As technology increases and people live longer and live with more complex care needs, the family has been picking it up, not the formal health care system,” said Susan Reinhard, senior vice president and director of AARP’s Public Policy Institute.

Patients with dementia such as Scott Sleeper make the heaviest claims on caregivers’ personal resources. Annual expenses are almost $10,700 for someone with dementia — nearly twice what caregivers spend for someone without dementia, AARP reported.

“I had hoped and I had planned that I would be able to provide that care for Scott until he died. I thought our retirement was going to be enough to carry us at least two or three years, and lo and behold it didn’t,” Denise Sleeper said.

Among the expenses caregivers cover are relocation costs for a caregiver or recipient; renovating homes with safety features such as wheelchair ramps and bathroom grab bars; assuming a loved one’s mortgages and other household payments; buying specialized equipment including wheelchairs, scooters and beds; covering insurance premiums; and paying for home care aides or respite services.

Costs vary depending on the recipient’s age, independence and relationship to the caregiver, according to AARP. For example, attending to someone older than 50 costs more than assisting someone between 18 and 49, and caring for spouses leads to more out-of-pocket expenses than caring for friends or relatives. Household expenses account for the largest share of personal costs — 41 percent.

AARP found generational differences in caregivers’ financial burdens, too. Older caregivers between 71 and 91 years old spent the most in dollars — $13,875 a year. Millennials, those between ages 18 and 34, spent the largest share of their incomes — 27 percent — helping loved ones.

The demands lead to life adjustments for caregivers: 45 percent reported they stopped taking vacations and 45 percent said they ate out less often to compensate for their extra costs.

Many sacrificed personal essentials as well: 19 percent scaled back on their own doctor visits, 18 percent bought fewer groceries and 5 percent spent less on their children’s education.

Caregivers surveyed reported that the time and energy they devoted to the task also affected their work lives. Nearly 1 in 3 reported changing hours, almost 30 percent took paid time off and 22 percent took unpaid time off.

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

By Rachel Bluth

Terminally Ill Patients Don’t Use Aid-In-Dying Laws To Relieve Pain

Supporters of “death with dignity” have succeeded in legalizing medical aid-in-dying in five states by convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks.

When Gov. Jerry Brown signed California’s law in 2015, he said: “I do not know what I would do if I were dying in prolonged and excruciating pain” and that it would be a “comfort to consider the options afforded by this bill.”

Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain. Those who’ve actually used these laws thus far have been far more concerned about controlling the way they exit the world than controlling pain.

The research suggests that patients’ motivations are more complicated than they’re often portrayed and could affect or shape how people vote on the issue in other cities and states.

Colorado voters will decide on a ballot initiative to legalize physician aid-in-dying in November. The city council in Washington, D.C., is expected to vote on legalizing the practice next month.

“It’s almost never about pain,” said Lonny Shavelson, a Berkeley, Calif., physician who specializes in the care of the terminally ill and who began writing prescriptions for lethal doses of medication in June, when California’s law took effect. “It’s about dignity and control.”

Pain ranks near the bottom of a list of patients’ concerns in Oregon and Washington, the first two states to legalize physician-assisted dying, which provide the most complete details about people’s motivations. Only 25 percent of the 991 Oregon patients who died after taking lethal prescriptions from 1998 to 2015 were concerned about pain or had inadequate pain control, according to reports filed with the state by their doctors. In Washington, 36 percent of 917 who died were concerned about pain.

In contrast, at least 90 percent of patients in both states were motivated by a loss of autonomy, state records show. Forty-one percent of patients in Oregon and 53 percent in Washington said they feared burdening the people they loved. Montana, Vermont and California also permit aid-in-dying, but haven’t released detailed information about patients’ motivations.

Seeking Control

Compassion & Choices, an advocacy group that supports aid-in-dying, focuses heavily on the need to relieve dying patients of pain.

One of the group’s new ads promotes the District of Columbia’s Death With Dignity Act as giving “a dying person the option to avoid the worst pain and suffering at the end of life.” The widower of Brittany Maynard, a 29-year-old California woman who became the best-known advocate for the right to die, has spoken publicly in support of the legislation. Maynard, who had an aggressive brain tumor, moved to Oregon in 2014 in order to use that state’s aid-in-dying law. She died that year after using a lethal prescription.

“The dying process is what Brittany feared,” said her husband, Dan Diaz. “She was afraid that her final few days on this green earth would be ones where she was tortured by the tumor.”

Mary Klein, a 68-year-old resident of the District who is fighting advanced ovarian cancer, said she wants choices at the end of her life.

“I want to have the option to control my own body and control my own life,” said Klein, a retired journalist and artist who appears in a video supporting legislation to legalize aid-in-dying in the city, created by Compassion & Choices.

Although Klein says she may also enroll in hospice care, which focuses on the needs of people with six months or less to live, she wants to have an alternative if the services don’t meet her needs.

“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania. He noted that most of those who’ve used aid-in-dying laws are white, well-insured and college educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”

A study of 56 Oregon patients interested in physician aid-in-dying reached similar conclusions. Although patients were concerned about the risk of future pain, they ranked “current pain” as unimportant, according to the 2009 study in Archives of Internal Medicine (now known as JAMA Internal Medicine). Patients told researchers they were primarily motivated by a desire to “control the circumstances of death and die at home,” as well as a loss of independence, poor quality of life and their inability to care for themselves.

The patients interviewed “look forward to this period in their terminal illness, this time in which they will be not in control, when they will be dependent on others, when they will have a bunch of physical symptoms that will undermine their quality of life, and they want to avoid that,” said Linda Ganzini, a professor of psychiatry and medicine at Oregon Health & Science University.

Critics of aid-in-dying laws have for years warned that they could set the country on a “slippery slope,” in which lethal prescriptions are dispensed not just to the terminally ill, but to anyone with a disease that harms their quality of life. Those fears haven’t come to pass. But physician Ira Byock, who specializes in palliative care, said aid-in-dying laws are creating a slope of another kind. Instead of helping only terminally ill patients in physical pain, they’re being used by patients in psychological distress.

“It’s a bait and switch,” said Byock, executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, based in Torrance, Calif. “We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”

Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”

Hospice staff are on call 24 hours a day to help patients in pain, Byock said. Palliative care and hospice teams also can train family caregivers how to administer emergency pain medications that take effect before nurses can arrive.

Hospice may have alleviated some patients’ concerns, said physician Thomas Smith, director of palliative medicine at Johns Hopkins Medicine in Baltimore. Just 64 percent of Oregon patients and 82 percent of Washington patients last year actually used the lethal medications they were prescribed. Others died without taking them.

“Many people who have the prescriptions don’t use them,” Smith said. “That suggests to me that some people find meaning and purpose and adequate symptom control, not just that they are too weak to take the pills.”

Many Kinds Of Suffering

Barbara Coombs Lee, president of Compassion & Choices, said it’s difficult for people to predict how they will feel as they face a deadly illness. While a healthy person might not imagine being able to tolerate physical disability, people facing the prospect of an early death are often willing to accept harsh treatments or a reduced quality of life in exchange for more time.

That change in perspective could help explain why some of those who advocate for the right to die, including those who obtain lethal prescriptions, never actually choose to hasten their death, Coombs Lee said. But she said that having the prescription on hand can ease patients’ anxiety and give them peace of mind, because they can control the timing and method of death.

Coombs Lee also notes that people can suffer in many ways beyond physical pain. Maynard’s brain tumor caused her to suffer frequent seizures, for example. Coombs Lee also described the case of a dying woman who took a lethal prescription after she began leaking fecal matter, which prevented her from ever feeling clean.

Coombs Lee quotes the woman, Penny Schleuter, in her book, Compassion in Dying: Stories of Dignity and Choice. Schleuter said the pain from her cancer could be controlled. But, she added, “I like doing things for myself, and the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”

Coombs Lee said, “everyone who is terminally ill has some kind of nightmare that would be worse than death to them. They want to achieve sufficient control to avoid that nightmare for their family.”

Dan Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.

“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bed sores, I would then submit, is that really living?” Diaz asked.

Some people who pursue physician-assisted death “don’t want to be in a hospital, don’t want to be connected to tubes,” Coombs Lee said. “They say, ‘I want to be at home with those I love. I don’t want to be delirious or unconscious at the end of life. Those are all things that play into their fears about what their disease might descend into.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Feds Find Doctor Listings Often Wrong In Medicare Advantage Directories

Feds Find Doctor Listings Often Wrong In Medicare Advantage Directories

Provider directories for private Medicare Advantage plans are riddled with errors, according to the government’s first in-depth review.

The results made public Monday, arriving amid the annual enrollment period through Dec. 7, validate gripes long made by seniors and consumer advocates. The level of errors still surprised regulators, said officials from the Centers for Medicare & Medicaid Services who disclosed their findings at an industry conference in Washington.

Incorrect information was found for almost half of the 5,832 doctors listed in directories for 54 Medicare Advantage plans checked last fall, they said. Only online directories were examined.

The government hopes that a new rule this year will help raise that bar because it requires Medicare Advantage plans to contact doctors and other providers every three months and update their online directories in “real time.”

CMS did not identify the names of insurers that were surveyed.

CMS’ survey found the most error-prone listings involved doctors with multiple offices that did not serve health plan members at each location, said Christine Reinhard, a health insurance specialist in the CMS Division of Surveillance, Compliance and Marketing.

Explanations could be that the doctor was retired, worked at a different location or never worked at the address. Or maybe the doctor never had a contract with the Medicare health plan — a less likely possibility, according to officials.

The review also uncovered:

  • Wrong phone numbers for 521 doctors’ offices.
  • Wrong addresses for 633 doctors’ offices.
  • Error rates that exceeded 60 percent of the doctors surveyed for five Medicare Advantage plans.

CMS has not issued any fines but that could still occur, said Jeremy Willard, also a health insurance specialist in the CMS surveillance division. Inaccuracies found in the Medicare Advantage directories could lead to penalties up to $25,000 a day per beneficiary or bans on new enrollment and marketing.

Senior citizens rely on provider directories when choosing a health plan to identify in-network doctors. They also use them when seeking referrals to specialists.

“Errors jeopardize the beneficiary’s ability to be connected with a needed provider,” Willard said.

CMS carried out the survey by randomly calling 108 doctors representing primary care, cardiology, ophthalmology and oncology for the Medicare Advantage companies. The highest error rates involved primary care physicians and cardiologists.

America’s Health Insurance Plans, the industry trade group, said its companies work hard to make provider directories accurate and keep them up-to-date.

“That’s what consumers need — and that’s what we’re committed to improving,” said spokesman David Merritt, acknowledging that plans needed to do better.

More than 17 million Americans, or nearly a third of Medicare beneficiaries, get coverage through Medicare Advantage plans.

Medicare Advantage plans and most exchange plans restrict coverage to a network of doctors, hospitals and other health care providers that can change during the year.

CMS is also surveying Medicare Advantage companies this fall, and officials hope to survey every company by 2018 when the three-year review will be completed.

By Phil Galewitz

Young Boy’s Struggle To Survive Sparked Push For Drugs For Terminally Ill

Young Boy’s Struggle To Survive Sparked Push For Drugs For Terminally Ill

At age 7, Josh Hardy became the poster child for a movement to help desperately ill or dying patients access experimental therapies which, they hope, will save their lives.

People around the world rallied 2½ years ago when a small biotech company refused to provide the Fredericksburg, Va., boy, who had battled cancer since infancy, with an experimental drug that doctors believed could save Josh from a life-threatening infection. Within days, a social media campaign called #SaveJosh, sparked by his mother’s anguished Facebook post and propelled by well-connected supporters, spurred thousands of people to contact the company, Chimerix Inc. of North Carolina, prompting it to release the drug.

For a time, Josh recovered. But his body remained weakened by disease, and Josh died last month at age 10.

Yet the #SaveJosh campaign has had an enduring impact on efforts to expand “compassionate use” of experimental therapies.

Josh’s story — and the plight of thousands of others facing life-threatening diseases with no government-approved therapies — has inspired multiple, sometimes conflicting efforts by government, industry and activists to make experimental medications more widely available.

The Food and Drug Administration, whose staff initiated the clinical trial that provided Josh his medication, has reduced the time that doctors spend requesting an unapproved drug to just 45 minutes. The agency says it approves 99 percent of such applications, granting most requests in four days and emergency requests within hours. The agency is even considering hiring “navigators” to walk doctors through the process.

Nonetheless, some patient advocates are leading a drive to provide access to experimental drugs without the FDA’s help.

Thirty-two states have passed laws designed to give patients the “right to try” an unapproved medication, by protecting doctors who provide such therapies from losing their state medical licenses. Republicans have included the right to try unapproved drugs in their national presidential platform.

Christina Sandefur, executive vice president at the libertarian Goldwater Institute, which has coordinated right-to-try efforts, said terminally ill patients shouldn’t have to ask for a “permission slip” from the FDA. “If you are dying and you’ve exhausted all other options and this medication has passed basic safety testing, you should be able to work directly with the drug companies and your doctor without having to go through the FDA.”

Yet even some supporters of the right to try acknowledge the state laws have helped relatively few patients.

Sen. Ron Johnson (R-Wis.) chairman of the Homeland Security and Governmental Affairs Committee, introduced a federal right-to-try bill in May as a way to bolster the state initiatives. At a hearing in September, Johnson said his bill “simply says patients, who have no alternative and are facing death, should have the right to try to save their own lives — and the right to hope.”

Drug developers get the message

The renewed interest in compassionate use — which first emerged as a national issue during the AIDS crisis of the 1980s — also has spurred pharmaceutical companies to ramp up “expanded access” programs.

Some are concerned that social media campaigns give unfair advantages to families who are well-connected and media-savvy. Minorities, immigrants and people who aren’t fluent in English could be less able to mount effective campaigns, said Alison Bateman-House, a bioethicist at New York University Langone Medical Center. She’s been working with Johnson & Johnson to help ensure its compassionate use system allocates drugs fairly.

Marathon Pharmaceuticals, which is developing a steroid to treat a fatal disease called Duchenne muscular dystrophy, has been working with patient advocacy groups to enroll patients in its compassionate use program. The Illinois company anticipates enrolling 800 patients by February in its expanded access program for the steroid, called deflazacort.

While some drug developers were moved by Josh’s plight, others were motivated by a fear of negative publicity, Bateman-House said. Almost overnight, Chimerix became a symbol of corporate indifference. Critics posted the home address of Chimerix executives online, and some received death threats. The company replaced its CEO within a month of the controversy.

“The majority of the pharmaceutical industry suddenly got terrified that they were going to be the next Chimerix,” Bateman-House said.

And while drug companies tend to look like the bad guys when they deny drug access, Bateman-House said there are legitimate reasons for caution. Experimental medications haven’t been fully tested for safety and could make people with terminal illnesses die faster and in more pain.

“Companies worry about the risk,” said Richard Klein, director of the FDA’s patient liaison program. His story was “really public and really in the limelight. If he had not done well, what would have happened to that tiny little company? They would have been at a tremendous disadvantage.”

Patient advocates disagree on strategy

Advocates for people with life-threatening illnesses disagree about the best way to expand access to experimental therapies.

Laura McLinn, an Indianapolis mother whose 7-year-old suffers from Duchenne muscular dystrophy, supports right-to-try laws. She championed Indiana’s right-to-try legislation, and her son, Jordan, stood next to Gov. Mike Pence when he signed the bill into law.

Although Jordan looks perpetually cheerful, dressed for public photographs in a firefighter costume and helmet, he’s already beginning to decline. Jordan gets tired faster than he used to. He cries at night when his body hurts. He falls and can’t keep up with his friends. “He can’t do the things they are dong at recess and he doesn’t understand why,” McLinn told a Senate committee in February.

In spite of the McLinn family’s support for the right-to-try movement, Indiana’s law hasn’t helped Jordan access any experimental therapies.

Although Jordan is taking an unapproved steroid, McLinn hasn’t accessed it through right-to-try laws. She orders the medication through the mail from an overseas manufacturer. The FDA permits these orders under certain circumstances, such as when patients with serious disease have no alternatives.

McLinn said Jordan’s best hope for a medical breakthrough will come from a traditional clinical trial, overseen by the FDA and run by a Massachusetts pharmaceutical company, Sarepta Therapeutics, which won approval in September for another muscular dystrophy drug. McLinn said she hopes her son will begin the trial within months.

Some say right-to-try laws have accomplished little in the past two years.

“The right-to-try laws are something that a lot of families and patients are interested in, but they don’t really have any teeth in them,” said Dr. Valerie Cwik, executive vice president and chief medical and scientific officer at the Muscular Dystrophy Association.

Right-to-try laws wouldn’t have helped Josh Hardy, because the laws don’t require drug developers to actually make their medications available, Bateman-House said. The laws also don’t require that insurance companies pay for the treatments. The movement’s main intent is to undermine the FDA, Bateman-House said.

“The cruel reality with the right-to-try legislation is that it will not grant patients the immediate access to treatments they desperately need,” said Andrew McFadyen, executive director of the Isaac Foundation, a nonprofit based in Ontario, Canada, that funds research to fight MPS, the fatal genetic disease that afflicts his 12-year-old son.

The first doctor to openly acknowledge using a state right-to-try law, Houston cancer specialist Ebrahim Delpassand, came forward in September at Johnson’s hearing, where he testified via video. Delpassand said that he has given an unapproved drug, LU-177, to 78 patients with advanced neuroendocrine cancers under Texas’s right-to-try law.

Those numbers are dwarfed by the number granted expanded access by the FDA, which last year approved 1,262 requests for all drugs. The actual number of patients included in these FDA requests is much larger, because some requests were made on behalf of trials that include hundreds or even thousands of patients.

For example, about 35,000 patients received the lung cancer drug Iressa through expanded access before that drug was approved, said Klein.

At the Senate hearing, Johnson acknowledged that state right-to-try laws haven’t produced as many big wins as supporters had hoped.

Although state right-to-try laws protect doctors from losing their licenses if they prescribe unapproved drugs, physicians may be reluctant to use the laws, for fear of violating federal regulations, Johnson said.

Even in a right-to-try state, doctors such as Delpassand “are taking a huge risk” in providing unapproved treatments, Johnson said. “We need the federal law for the state laws to kick in. Until the federal government acts, the state laws are not effective.”

KHN’s coverage of end-of-life and serious illness issues, aging & improving care of older adults and prescription drug development, costs and pricing are supported by The Gordon and Betty Moore FoundationThe John A. Hartford Foundation and the Laura and John Arnold Foundation.

For Seniors, Teeth Need Care — But Insurance Coverage Is Rare

For Seniors, Teeth Need Care — But Insurance Coverage Is Rare

Aging can take a toll on teeth, and for many seniors paying for dental services is a serious concern because they can’t rely on their Medicare coverage.

Low-income seniors, in particular, are struggling. More than a third with incomes below 200 percent of the federal poverty level (about $23,000 annually) had untreated tooth decay between 2011 and 2014, according to an analysis of federal data by the American Dental Association.

“What ends up happening is that almost everybody, when they get to be 65, is sort of on their own and they have to pay for dental care out of pocket,” said Dr. Michael Helgeson, chief executive officer of Apple Tree Dental. Apple Tree is a Minneapolis-based nonprofit organization operating eight clinics in Minnesota and California that target underserved seniors, as well as mobile units that provide on-site dental care at nursing homes and other facilities.

Traditional Medicare doesn’t usually cover dental care unless it’s related to services received in a hospital. Medicare Advantage managed care plans generally provide some dental care, but the coverage can vary, and often is minimal, dental advocates say. The plans often are “a loss leader,” said Dr. Judith Jones, a professor of dentistry at Boston University. “It’s meant to attract people. It gets people in but the coverage is really limited.”

In a way, older people are victims of dentistry’s success. Regular visits to the dentist, along with daily tooth brushing and water fluoridation, have all contributed to improvements in oral health. In the first half of the 20th century, by the time people reached their 30s or 40s many had already lost all their teeth, Helgeson said, while today more than 60 percent of people in nursing homes still have at least one tooth.

But teeth need tending. Without regular dental care, tooth problems can cause pain and limit how much and what type of food people are able to eat. Similarly, gum disease can loosen teeth and allow bacteria to enter the body. A growing body of research has linked treating periodontal disease with lower medical costs for diabetes and heart disease, among other conditions.

People’s lives are affected in other ways by their oral health. “You use your mouth to eat and kiss and smile and interact socially,” said Jones. “It’s a source of great embarrassment and suffering for many adults without access to care.”

With limited income and no insurance, seniors may skip visiting the dentist regularly, even though many report that their mouths are dry and painful, and they have difficulty biting and chewing, not to mention avoiding smiling and social interaction if they have missing or damaged teeth.

Medicaid, the state-federal program for lower income people, covers dental care for children in every state, but coverage for adults is much spottier. Most states coveremergency dental care, but eight states offer no adult dental benefits at all, according to a study by Oral Health America, an advocacy group.

Even trying to purchase private dental insurance, which typically covers a few thousand dollars worth of dental care, may not provide good value, said Marko Vujicic, vice president of the American Dental Association’s Health Policy Institute. “When you add up the premiums and copays, for the vast majority of adults it’s not worthwhile to have dental insurance,” he said.

Seniors with traditional Medicare spent $737 on average out-of-pocket on dental care in 2012, said Tricia Neuman, director of the Program on Medicare Policy at the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

But the figures may be much higher for people who need major restorative work.

“I know people who are spending sometimes more than $10,000 on what they consider essential dental care, like implants, none of which is covered,” Neuman said.

Seniors with limited means have few options for help affording dental care. Federally qualified health centers may provide geriatric dental services on a sliding-fee scale, and clinics like Apple Tree help a limited number of seniors who live in their service area. But they’re a band-aid, said Jones.

She and other advocates want Medicare to add a dental benefit to Medicare Part B. Their proposal would provide a basic bundle of diagnostic and preventive services through a premium increase, and seniors would only be responsible for copayments if they need pricey restorative work like crowns and bridges.

“Over the years, there has been some interest in expanding Medicare to include dental coverage,” Neuman said. But a dental benefit has faced stiff competition from other priorities, including adding a prescription drug benefit in 2006 and preventive coverage under the health law in 2010.

But some people think this time might be different. “There are 250,000 people every month who are turning 65, and 30 percent of dentists say they could use more business,” said Beth Truett, president and CEO of Oral Health America, which supports the proposal. “It’s a perfect storm.”

KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

By Michelle Andrews

An Idea Borrowed From South Africa: Ordinary Citizens Fill Gaps In Health Care

An Idea Borrowed From South Africa: Ordinary Citizens Fill Gaps In Health Care

Destini Belton isn’t a doctor or a nurse. She’s a trained health coach, and as a trusted neighbor in Harlem, she goes where clinics and hospitals can’t — into patients’ homes to understand the mundane but vital details of their lives.

She visits people like Jessica Gonzalez who went blind at the age of 22 because of uncontrolled Type 1 diabetes. Now 33, Gonzalez has high blood pressure, high cholesterol and renal disease. Belton worries that Gonzalez isn’t taking the right medication at the right time because she can’t see the bottles.

Belton’s work follows an example from half a world away. A nonprofit called Mamelani Projects brings health care into neighborhoods in Cape Town, South Africa by employing trusted community leaders. There are surprising similarities between South Africa, and the U.S.: a shortage of doctors in poor neighborhoods; widespread distrust of once segregated hospitals; concentrated and crippling poverty and a growing recognition that models of care that go beyond brick-and-mortar clinics are needed.

Belton is one of a small team of community health workers trained by Manmeet Kaur to help patients in New York City. Kaur trained with the Mamelani Projects in the townships of Cape Town. The organization she founded, City Health Works, contracts directly with primary care providers, like Mount Sinai Health System, to better manage their most difficult patients.

When chronically ill patients like Gonzalez do visit the doctor, researchers have found that half of them leave confused. Health coaches can help patients make sense of a doctor’s directions and see up close the stresses of poverty they may be too embarrassed to share.

Gonzalez, for instance, is reluctant to admit her struggles to her doctor, but she trusts Belton to understand.

“With your doctor you don’t really want to say what you eat,” said Gonzalez, who is obese. “So I’m able to tell her like really, if I’m not going well, or if I sneaked and cheated I tell her the right things, and she helps me.”

At weekly meetings, they discuss how patients, many disabled and with dementia, can stabilize their health and avoid costly visits to the emergency room and lengthy hospital stays. Nearly all of City Health Works’ clients are poor, juggling seven or more prescriptions and facing chronic illnesses that frequently spiral out of control.

Kaur first witnessed the use of community health workers in sub-Saharan Africa, where doctors are in short supply and difficult to reach and later had an internship with Mamelani.

Long lines besiege clinics and hospitals in South Africa which are overwhelmed by endless needs. Apartheid-era laws created widespread poverty and desperate health conditions, especially in townships surrounding city centers like Cape Town.

But for conditions like HIV, hypertension and diabetes, life-saving drugs are useless — and even harmful — without proper nutrition. Too often in townships, daily diets are filled with junk food, fish and chips, meat and very few vegetables. So Mamelani Projects decided to teach local women about health and nutrition. They conduct classes in garages and visit people in their homes.

In the U.S., the need for health coaches is spurred in part by the Affordable Care Act and major changes in how hospitals are paid. Private and public insurers are testing out so-called bundled payments and other strategies that reward value instead of volume, and there are strong financial incentives to steady the lives of people like Jeanette Rodriguez, even when those needs seem to have nothing to do with health care.

A diabetic who suffers from back pain, Rodriguez was nearly done in by the stress of caring for her father. City Health Works’ Belton intervened, helping her find a nursing home for him and guiding her appeal for disability benefits.

But she’s also a liaison for Rodriguez’s own medical needs, helping her keep track of appointments and drafting a list of ailments and questions for her doctor.

That’s a big part of a health coach’s job — teaching patients to be better advocates for themselves.

During an appointment at a nearby Mount Sinai clinic, that preparation has paid off. Dr. Joseph Truglio tells Rodriguez she likely had a mild stroke.

Rodriguez had dismissed the tingling on her right side as arthritis, but Belton’s insistence — and long history working with her — ensured Truglio would take notice. And that is City Health Works’ goal: identify patients careening toward catastrophe and intervene before it happens.

“Here we have a patient that had not been to the ER, but was slowly getting worse,” said Truglio. “So that’s the real success story, as opposed to sort of finding patients who are already in the hospital for something that we should have been dealing with for years before that.”

Coaches use electronic health records to inform doctors about developments in the field, like whether patients are taking their medications or experiencing changes in their mental health.

Kaur wants to make coaches an indispensable part of the health care system by professionalizing their role and proving their financial value.

“Six years ago, the word ‘community health worker’ was foreign to most people we spoke to,” she said. “Now it is written into almost every single grant or funding opportunity from [Medicare and Medicaid].”

But Kaur goes home each night to one of her biggest skeptics. Her husband, Dr. Prabhjot Singh, heads the department of health system design at Mount Sinai. He’s weighing whether there’s enough evidence that her program works and should be integrated into Mount Sinai’s core business.

“Every time somebody sees one of these beautiful, well-designed, kind of custom engagement tools, I think the thought that comes up a lot with my colleagues, and frankly my own, is: How do you do this for 40,000 people? 50,000 people at the scale of the Mount Sinai Health System?” said Singh.

He added, “We actually have to know whether or not the relationship between Destini and her client is effective. It may feel really good, but from a health system perspective, we have to really understand, ‘Is she getting healthier? And are we doing it in a cost effective way?’”

There are early signs the program is working: Patients with health coaches cost $600 a month less in medical care than a control group, a strong indication that coaches prevented expensive medical emergencies. For half the patients, coaches alerted doctors about patients’ urgent needs.

City Health Works remains a small venture, supported largely by foundations interested in testing the model.  But Kaur’s ultimate aim is to have thousands of coaches like Destini Belton in neighborhoods around the country that can match the successes seen elsewhere in the world.

PBS NewsHour Producer Jason Kane contributed to this report.

By Sarah Varney

Seniors Suffer Amid Widespread Fraud By Medicaid Caretakers

Seniors Suffer Amid Widespread Fraud By Medicaid Caretakers

An Alaska man developed gangrenous toes. A Philadelphia woman froze to death on the street. An Illinois woman died emaciated, covered in excrement.

These patients suffered as their government-paid caretakers neglected them, collecting paychecks under a Medicaid program that gives elderly and disabled people non-medical assistance at home. In some cases, the caretakers convicted of neglect were the victims’ own family members.

The Personal Care Services program, which exceeded $14.5 billion in fiscal year 2014, is rife with financial scams, some of which threaten patient safety, according to a recent report from the Office of lnspector General at the Department of Health and Human Services.

The OIG has investigated over 200 cases of fraud and abuse since 2012 in the program, which is paid for by the federal government and administered by each state. These caretakers, often untrained and largely unregulated, are paid an average of $10 per hour to help vulnerable people with daily tasks like bathing, cleaning and cooking.

The report exposes vulnerabilities in a system that more people will rely on as baby boomers age. Demand for personal care assistants is projected to grow by 26 percent over  the next 10 years — an increase of roughly half a million workers — according to the U.S. Department of Labor.

“This type of industry is ripe for fraud,” warned Lynne Keilman-Cruz, a program manager at Alaska’s Department of Health and Social Services who has investigated widespread fraud. The risks increase because the care takes place out of view in people’s homes, and because neglected patients may not advocate for their own care.

The OIG report describes a range of rip-offs, some of which involve caretakers caught up in the nation’s opioid epidemic. In one Illinois case, a woman whose nursing license had been suspended for allegedly stealing drugs at work signed up as a caretaker. She billed Medicaid for $34,000 in caretaking services she didn’t provide — including charges made while she was on a Caribbean vacation. In Vermont, a caretaker on probation for drug possession split her paychecks with the patient’s wife — in exchange for stealing the patient’s prescription painkillers, while he lay in visible discomfort.

In other cases, Medicaid beneficiaries colluded in hoaxes, faking disability so they could hire unneeded help.

In the worst cases, patients got hurt, sometimes fatally.

In Philadelphia, Christina Sankey, a 37-year-old woman with severe autism, froze to deathon the street after her caretaker, Hassanatu Wulu, lost her in a crowded Macy’s five miles away. Wulu, 32, pleaded guilty to neglect.

In some cases, elderly patients were neglected by their own children, who signed up for caretaker payments. In Idaho, a woman was hospitalized for severe dehydration and malnourishment after her son and caretaker, Paul J. Draine, neglected her. Investigators found the home they shared littered with drug paraphernalia. Draine pleaded guilty to fraud and abuse or neglect, and was sentenced to a sober home.

In Illinois, a woman was found incoherent and covered in feces after her daughter and caretaker, Jessica Teets, of Granite City, failed to show up for over a week. The woman, Susan A. Smith, who loved crocheting and quilting, died seven months later at just 46. Teets was convicted of fraud and sentenced to five years’ probation.

Investigators provided no count of how many cases of fraud and abuse involved relatives, but “it’s fairly common for family members to be the attendants, and it’s fairly common for those same family members to be the ones who are abusing, neglecting, or committing fraud,” said David Ceron, an OIG special agent based in Washington, DC. In California, three-quarters of Medicaid-funded personal assistants are relatives, though some states restrict hiring family members.

In California, a Kaiser Health News investigation last year revealed widespread problems, as well as a lack of training and oversight, in the state’s program, which is the largest in the U.S.

dorothycooper2_vertical

Dorothy Cooper of Cahokia, Illinois, died emaciated and malnourished in 2013; her Medicaid-funded caretaker was convicted of fraud in connection to her death by neglect. (Undated family photo)

In one disturbing Illinois case, a family member found 62-year-old Dorothy Cooper on the floor in her home in Cahokia, Illinois — covered with feces, malnourished, with bone-deep ulcers and open wounds. She was pronounced dead at the hospital.

Lisa Luckett, her alleged caretaker, who was disabled herself, had billed Medicaid for Cooper’s care for more than six years using fraudulent names. Cooper’s death in 2013 was ruled a homicide. Luckett, who had a prior child neglect conviction, pleaded guilty to fraud and was sent to prison for four years.

At the funeral home, Cooper looked “like she was a malnourished animal, just skin and bones,” her niece, Jacqueline Cooper-Cannon, said in an interview. Luckett “neglected my aunt, and it was a horrible death for her.”

The negligence extended beyond the caregiver to the system, which failed to dig into Luckett’s criminal history, notice forged signatures or monitor Cooper’s wellbeing, her niece said. She called on the state to institute mandatory training and background checks.

The inspector general’s office, which has documented years of fraud and neglect in the program, urged federal action. The Centers for Medicare and Medicaid Services requires no standard training — nor background checks — for personal care attendants. Fraud can be hard to track, because many states don’t register caretakers, or even identify the worker in Medicaid claims, the OIG report found.

In the report, the OIG called on CMS to establish national qualifications, including background checks, and ensure every claim identifies the worker and time of service. It also called on CMS to require states to enroll all personal assistants, so they can be tracked by unique numbers.

That’s just what Alaska has done. It began requiring enrollment for personal care assistants in 2011 and now has 8,000 workers assigned unique identifying numbers, used with every claim.

The system helped investigators determine that Good Faith Services, a large home health care company in Alaska, was billing Medicaid for half a million dollars’ worth of caretaker services never performed. Its workers made claims while they were out of the country, or after Medicaid beneficiaries were dead. As part of a criminal prosecution that convicted 50 people, the company dissolved and its owner, Agnes Francisco, pleaded guilty to fraud. She was sentenced in 2015 to three years in prison, and ordered to pay $1.5 million in restitution and fines.

Dorothy Cooper of Cahokia, Illinois, died emaciated and malnourished in 2013; her Medicaid-funded caretaker was convicted of fraud in connection to her death by neglect. (Undated family photo)

Cooper’s case is representative of the fraud and abuse in Medicaid’s Personal Care Services program.  (Undated family photo)

That case couldn’t have been cracked without the state database of workers’ identifying numbers, Keilman-Cruz said. The system enabled the state to see that one caretaker billed over 24 hours of service in a day. Another caretaker purported to be in Anchorage caring for one patient, just two minutes after caring for another patient in a town an hour away, Keilman-Cruz said.

In one case, Keilman-Cruz visited the home of a 63-year-old man with diabetes who had signed up to receive home help. The man told her that no help ever came — though a man would knock on his window and ask him to sign paperwork that he didn’t understand. Without a caretaker to bathe him, dress him and remind him to take medications, the man’s diabetes intensified and he grew gangrene on his toes, Keilman-Cruz said. The window-knocker, who had been falsifying timesheets, was later charged with fraud, as was his wife, who claimed to be the caretaker but never entered the home.

Alaska and Minnesota are among the states that now require caretaker enrollment. If other states followed suit, Keilman-Cruz said, “they would have eyes into all of the scams that we’ve uncovered.”

To detect impropriety, Illinois now requires personal assistants to call in at the beginning and end of each client visit; their phone calls are recorded in an electronic database, according to the Department of Human Services.

Meanwhile, CMS is trying to strengthen the program’s integrity, spokesman Tony Salters said. In February, CMS started training states to monitor “fraud, waste and abuse,” he said. The agency also published a bulletin offering states several options, including creating a registry, where consumers could look up which caretakers meet state qualifications.

But disability groups have pushed back against stricter regulations, arguing they don’t want to limit Medicaid beneficiaries’ access to caretakers. So CMS is treading lightly.

Instead of making background checks mandatory, CMS has granted $50 million to 26 states to set up background check programs.

And instead of requiring mandatory training, CMS has offered states the option of offering basic caretaker training — “without usurping beneficiary decisions on what skills are most appropriate for their homecare workers,” Salters said.

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

Repealing The Affordable Care Act Could Be More Complicated Than It Looks

Repealing The Affordable Care Act Could Be More Complicated Than It Looks

After six controversial years, the Affordable Care Act, aka Obamacare, may be on the way out, thanks to the GOP sweep of the presidency and both houses of Congress Tuesday.

“There’s no question Obamacare is dead,” said insurance industry consultant Robert Laszewski. “The only question is whether it will be cremated or buried.”

Senate Majority Leader Mitch McConnell (R-Ky.) confirmed Wednesday that repealing the law is something that’s “pretty high on our agenda.”

But promising to make the law go away, as President-elect Donald Trump did repeatedly, and actually figuring out how to do it, are two very different things.

“Washington is much more complicated once you’re here than it appears to be from the outside,” said William Pierce, a consultant who served in both the George W. Bush Department of Health and Human Services and on Capitol Hill for Republicans.

For example, a full repeal of the health law would require 60 votes in the Senate to overcome a filibuster. Given the small GOP majority in the Senate, “they would have to convince six or eight Democrats to come with them to repeal. That seems highly unlikely,” Pierce said.

Republicans could — and likely would — be able to use a budget procedure to repeal broad swaths of the law. The “budget reconciliation” process would let Republicans pass a bill with only a majority vote and not allow opponents to use a filibuster to stop movement on the bill.

But that budget process has its own set of byzantine rules, including one that requires that any changes made under reconciliation directly affect the federal budget: in other words, the measure must either cost or save money. That means “they can only repeal parts” of the law, said Pierce.

Republicans have a ready-made plan if they want to use it. The budget bill they passedlate last year would have repealed the expansions of Medicaid and subsidies that help low- and middle-income families purchase health insurance on the law’s marketplaces, among other things. President Barack Obama vetoed the measure early this year.

That bill also included, as Vice President-Elect Mike Pence promised in a speech last week in Pennsylvania, “a transition period for those receiving subsidies to ensure that Americans don’t face disruption or hardship in their coverage.” The bill passed by the GOP Congress at the end of 2015 set that date at Dec. 31, 2017.

Delaying the repeal date could work in Republicans’ favor, said Laszewski. “Then they’ll turn to the Democrats and say, ‘Work with us to replace it or be responsible for the explosion,’” he said.

But Tim Westmoreland, a former House Democratic staffer who teaches at Georgetown Law School, said that strategy won’t work. “I don’t think people will see the Democrats as responsible if it all blows up,” he said.

Meanwhile, Republicans have only the broadest outlines of what could replace the law. Trump’s campaign website has bullet-point proposals to allow health insurance sales across state lines and to expand health savings accounts — which allow consumers to save money, tax-free, that can be used only for health care expenses. House Republicans last summer offered up a slightly more detailed outline that includes creating “high-risk pools” for people with preexisting health conditions and turning the Medicaid program back to state control through a block-grant program.

Yet even Democrats are convinced that Obama’s signature accomplishment is on the chopping block. “A lot of people say, ‘Oh, they can’t really mean it. They wouldn’t really take health insurance away from 20 million people’” who have gained it under the law, John McDonough, a former Democratic Senate staffer, said at a Harvard School of Public Health Symposium last week. “How many times do [Republicans] have to say it before we take them seriously?”

One possibility, according to William Hoagland, a former GOP Senate budget expert now at the Bipartisan Policy Center, a Washington-based think tank, is that Republicans could use the budget process to combine tax reform with health policy changes. “And a reconciliation bill that includes reforms in Obamacare and tax reform starts to become a negotiable package” that could attract both Republicans and potentially some Democrats, who are also interested in remaking tax policy.

But if Congress does pass the GOP’s “repeal” before the “replace,” it needs to make sure that insurers will continue to offer coverage during the transition.

“Are [Republicans] going to invite insurers in and listen?” said Rodney Whitlock, a former House and Senate Republican health staffer. If there is no acceptable transition plan, “insurers can say the same thing to the Republicans that they’ve been saying to Democrats,” said Whitlock, which is that they are leaving the market.

That’s something that concerns insurance consultant Laszewski, who says that already there are more sick than healthy people signing up for individual coverage under the law. With probable repeal on the horizon, he said, that’s likely to get even worse. “A lot of [healthy] people will say, ‘Why sign up now? I’m going to wait until they fix it.’”

And if that happens, he said, there might not be any insurers offering coverage for the transition.

By Julie Rovner

Concerned About Losing Your Marketplace Plan? ACA Repeal May Take Awhile

Concerned About Losing Your Marketplace Plan? ACA Repeal May Take Awhile

President-elect Donald Trump has promised that he’ll ask Congress to repeal the Affordable Care Act on Day One of his administration. If you’re shopping for coverage on the health insurance marketplace, should you even bother signing up? If everything’s going to change shortly after your new coverage starts in January anyway, what’s the point?

While it’s impossible to know exactly what changes are coming to the individual market and how soon they’ll arrive, one thing is virtually certain: Nothing will happen immediately. Here are answers to questions you may have.

Q. How soon after Trump takes office could my marketplace coverage change?

It’s unlikely that much, if anything, will change in 2017.

“It’s a complex process to alter a law as complicated as the ACA,” said Sara Rosenbaum, a professor of health law and policy at George Washington University. It seems unlikely that congressional Republicans could force through a repeal of the law since Democrats have enough votes to sustain a filibuster blocking that move. So Congress might opt to use a budget procedure, called “reconciliation,” that allows revenue-related changes, such as eliminating the premium tax credits,  with simple majority votes. Yet even that process could take months.

And it wouldn’t address the other parts of the health law that reformed the insurance market, such as the prohibition on denying people coverage if they’re sick. How some of those provisions of the law will be affected is still quite unclear.

“It will likely be January 2019 before any new program would be completely in place,” said Robert Laszewski, a health care industry consultant and long-time critic of the law.

The current open enrollment period runs through January 2017. Shop for a plan, use it and don’t focus on what Congress may do several months from now, Rosenbaum advised.

Q. Will my subsidy end next year if the new administration repeals or changes the health law?

Probably not. Mike Pence, the vice president-elect, said on the campaign trail that any changes will allow time for consumers receiving premium subsidies to adjust.

Timothy Jost, an emeritus professor at Washington and Lee University School of Law in Virginia who is an expert on the health law, also predicts a reasonable transition period.

Congress and the new administration are “not eager to have a bunch of angry, uninsured voters,” Jost said.

Theoretical conversations about changing the health law are one thing, but “I think that Congress may be less willing to just wipe the subsidies out if a lot of people are using them,” Rosenbaum said. More than 9 million people receive subsidies on the marketplace, according to the federal Department of Health and Human Services.

Q. Can my insurer drop out once the new administration takes over, even if the law hasn’t been repealed?

No, insurers are generally locked in contractually for 2017, according to experts. But 2018 could be a whole different story, said Laszewski.

Many insurers are already losing money on their marketplace offerings. If they know that the health insurance marketplaces are being eliminated and replaced by something else in 2019, why would they stick with a sinking ship?

“The Trump administration could be left with a situation where Obamacare is still alive, the subsidies are still alive, but not the insurers,” said Laszewski. To prevent that, the Trump administration might have to subsidize insurers’ losses during a 2018 transition year, he said.

Q. My state expanded Medicaid to adults with incomes up to 138 percent of the federal poverty level (about $16,000). Is that going to end if Obamacare is repealed?

It may. Trump has advocated giving block grants to finance the entire Medicaid program on the theory that it provides an incentive for states to make their programs more cost-effective. But that strategy could threaten the coverage of millions of Americans if the block grants don’t keep pace with costs, Jost said.

So far, 31 states and the District of Columbia have expanded Medicaid under the health law. Republican governors in these states may play a key role in arguing against taking the expansion money away, Rosenbaum said.

Q. I have a heart condition. Does this mean I’m going to have a hard time finding coverage?

It’s possible. The health law prohibits insurers from turning people away because they’re sick and may be expensive to insure.

Republicans have generally promised to maintain that guaranteed insurability, but what that would look like is unclear. Some of their plans would require people to remain continuously insured in order to maintain that guarantee, said Laszewski.

“I would advise people who are sick to get good coverage now and hang onto it,” said Jost.

Q. Since Republicans have pledged to repeal the law, can I ignore the law’s requirement that I have health insurance?

The individual mandate, as it’s called, is one of the least popular elements of Obamacare. As long as it’s the law, you should follow it, experts said.

Insurers have argued that the requirement that they take all comers who apply for health insurance only works if there’s a coverage mandate or other mechanism that strongly encourages people to have insurance. Otherwise why would they bother unless they were sick?

For the past few years, Republicans have been pushing hard to eliminate the mandate, Laszewski noted.

“One of the easy things they could do is just not enforce it,” he said.

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

By Michelle Andrews

Some Panic But Others Are Indifferent About Losing Obamacare

Some Panic But Others Are Indifferent About Losing Obamacare

The 20 million Americans who have gained health coverage under the Affordable Care Act don’t yet know exactly how the presidency of Donald Trump will change their lives — and reactions to that uncertainty range from anxiety to apathy.

“My phone is ringing off the hook,” said Billy Bradford, an insurance broker in Montgomery, Ala. “People are just in panic mode here.”

One call came from an older couple who had recently retired. Right now, the couple pays $57 per month for their insurance plan; without the subsidy they receive through the health law, the cost will shoot up to $2,000 a month. “They called me in tears afraid. They would not be hired back at their old jobs and are in poor health,” said Bradford.

But another set of consumers — who perhaps are healthier or feel like they are paying too much for too little coverage — may welcome a change. Trump told the Wall Street Journal on Friday that the law would be “repealed and replaced or amended.”

On Sunday, Trump was upbeat but vague about what that change might be, telling 60 Minutes: “It’ll be great health care for much less money. So it’ll be better health care, much better, for less money.”

It’s been well-documented that the public remains deeply divided over the law, which has been controversial since it passed in 2010. A recent Gallup poll found that 51 percent of respondents are in favor of repealing Obamacare, while 45 percent oppose repealing it.

Denise Martinez Gascoigne, 49, in Greenland, N.H., has been paying $1,130 in premiums each month for insurance for her family of four that she purchases through the state’s exchange. Their deductible is $5,000 per person. Gascoigne and her husband are both self-employed and earn too much money to qualify for a subsidy.

“It’s so ridiculous that we pay over $1,100 a month, and we’re still left footing the bill for whatever prescription or procedure we might need in addition to the health insurance,” she said. “We just don’t go to the doctor.” Her premium is set to increase to nearly $1,330 in 2017.

Gascoigne, who is a Democrat, is “very disappointed and distraught” over the results of the election and supports a single-payer health system. Nonetheless, she said, she’s “somewhat indifferent” to the impending changes to the Affordable Care Act.

Tuan Nguyen, 38, worries what changes to the health law will mean for he and his mother Tammy Nguyen, 61. (Courtesy of Tuan Nguyen)

Tuan Nguyen, 38, worries what changes to the health law will mean for him and his mother, Tammy Nguyen, 61. (Courtesy of Tuan Nguyen)

But in Crystal, Minn., Xochitl Mendoza Ramirez is far from indifferent. She fears that she will lose her coverage: “I felt like throwing up. The past two days, it’s been me having these moments of crying at work.”

Ramirez, 22, has made good use of the insurance she gets through her state’s expansion of Medicaid, the government’s program for low-income adults. “If it wasn’t for the Affordable Care Act, there’s no way I would have gotten my gallbladder out or even gone to the doctor. I just couldn’t afford it.” She also relies on the insurance for therapy and medications for bipolar disorder.

Ramirez doesn’t know how she’ll get health insurance without the Medicaid expansion. She works two part-time jobs in retail, but neither provides health insurance. Any changes to the law are likely to take months or years before they go into effect, but Ramirez is already preparing for the worst. “As soon as I found out he was elected, I started making phone calls to get an IUD,” she said, referring to an intrauterine device for long-acting birth control. She found a doctor to do the procedure this week.

Tuan Nguyen, 38, in San Jose, Calif., has been paying $105 for a subsidized plan on the exchange. Recently, he’s been diagnosed with digestive problems and acid reflux and was pleased that each doctor visit cost him just $5.

“I’m happy with the plan. I’m just sad to have it taken away from me right when I really need it,” he said. “If the subsidy goes away, I’ll have to pay full price. That’s close to $500 or so. I can afford it, but it’s something that will definitely take a chunk out of my income. It would be a crunch.”

Richard Coppola, 48, says the Affordable Care Act has been a failure, but he is still concerned about what repealing the law would mean for him. (Courtesy of Richard Coppola)

Richard Coppola, 48, says the Affordable Care Act has been a failure, but he is still concerned about what repealing the law would mean for him. (Courtesy of Richard Coppola)

But he’s much more worried for his mother, who is being treated for Stage 4 lung cancer and receives her insurance through California’s Medicaid program. Nguyen worries that if the Republicans change the way they pay for Medicaid by making it block grant program, as they’ve promised, the funds for her $8,000-a-month medications could dry up. “I’ve thought about this the past few days. It’s been on my mind like crazy,” he said. “Right now she’s getting medication that’s extending her life. It could allow her to live years instead of months. … Are they going to pull the plug on her medications?”

Rebecca Geitz of Austin, Texas, said her subsidized premiums have been affordable, but her plan “is the most useless thing in the world. No one takes it!” When Geitz, 33, did get sick, her copays were so expensive that she said it was cheaper for her to just pay an urgent care clinic out of pocket. Nonetheless, she said, “I do know that if a serious emergency happened my coverage would help to some degree.” If the law is repealed, she worries she may not even have that.

Richard Coppola, 48, believes the Affordable Care Act has been a failure. He pays $378 for a plan with a $2,000 deductible, and his premiums are going up to $480 next year. But still, he said, he’s “terrified” about going back to a world without it. He worries about a system where he could be denied coverage for once having a mole removed years ago. He’s also concerned about lifetime cost limits being restored and the loss of subsidies for people with low incomes.

“The ACA is a piece of garbage,” Coppola said, “but the Wild West before was a lonely place.”

By Jenny Gold

Millions Could Lose Medicaid Coverage Under Trump Plan

Millions Could Lose Medicaid Coverage Under Trump Plan

Millions of low-income Americans on Medicaid could lose their health coverage if President-elect Donald Trump and a Republican-controlled Congress follow through on GOP proposals to cut spending in the state-federal insurance program.

The biggest risk for Medicaid beneficiaries comes from pledges by Trump and other Republicans to repeal the Affordable Care Act, which provided federal funding to states to expand Medicaid eligibility starting in 2014. Thirty-one states and Washington, D.C. did so, adding 15.7 million people to the program, according to the government. About 73 million are now enrolled in Medicaid — about half are children.

Reducing the number of people in Medicaid while ensuring that only the most needy — such as children and pregnant women — remain eligible will be a goal for Trump and the new Congress, said Brian Blase, senior research fellow at the conservative Mercatus Center at George Mason University in Virginia.

“If we do not have fewer people in Medicaid in four years, then we have not reformed health policy in a good direction,” he said.

But there are obstacles to the Republicans’ plans. Medicaid, one of President Lyndon Johnson’s “Great Society” domestic programs that was created in 1965, is the nation’s main health insurance program for low-income people.

Overhauling it is politically difficult because of the potential harm to recipients as well as the financial consequences to states, hospitals, doctors and other health providers, who might not get paid for their services if patients don’t have coverage. Total Medicaid spending was $532 billion in fiscal 2015, with about 62 percent funded by the federal government.

One major change endorsed by both Trump and House Speaker Paul Ryan (R-Wis.) would transform Medicaid from an entitlement program into a block grant program.

Here’s the difference. In an entitlement program, coverage is guaranteed for everyone who’s eligible. The federal government’s commitment to help states cover costs is open-ended. The states’ obligation is to cover certain groups of people and to provide specific benefits. Children and pregnant women who meet specific income criteria must be covered, for example.

That formula would change if federal funds flow to states through block grants. States would have more flexibility to run their Medicaid programs as they wish — including cutting benefits and eligibility. And proponents say it would allow the federal government to spend less on Medicaid and make states responsible for covering costs beyond their federal allotments.

Turning Medicaid into a block grant program has been discussed for more than 25 years, but the idea has always met resistance from some states, health providers, health care advocates and Democrats. Even with a Republican majority in Congress and Trump in the White House, the plan would still face an uphill legislative battle.

The federal government rarely shifts power to the states and not all states want to be at increased financial risk for the program.

“Medicaid block grants face a very uncertain future,” said Joel Cantor, director of the Center for State Health Policy at Rutgers University in New Jersey.

Another option to redefine Medicaid funding, similar to a block grant, is known as a per capita cap. States would be given a set amount of money per enrollee, which would increase each year but critics fear likely not keep up with rising health expenses. That method would help states better deal with growing enrollment because funding would rise, too.

Even without help from Congress, Trump’s administration could change Medicaid using the executive branch’s power to approve states’ requests for waivers from federal rules. That could allow Trump to approve changes proposed by Republican governors that the Obama administration has rejected, including work requirements for Medicaid enrollees and monthly premiums and other cost-sharing.

Trump could also end some waivers that expanded Medicaid and sent billions in new federal funding to some states that transformed care.

Any congressional changes to Medicaid next year would likely include negotiations about the Children’s Health Insurance Program, another federal-state program that provides coverage to youngsters whose families are slightly over the Medicaid eligibility. The program expires if not reauthorized by Sept. 30, 2017. According to the Kaiser Family Foundation, about 8 million children get coverage through CHIP, which has had Republican and Democratic support.

After Trump is in office, he may find it’s harder than he realized to repeal Obamacare and tinker with Medicaid because cutting off coverage for millions of people could bring plenty of political fallout, said Joan Alker, executive director of the Center for Children and Families at Georgetown University.

Republican Gov. Matt Bevin of Kentucky took a similar tack last year, she observed, running against Obamacare and vowing in his campaign to eliminate the expansion. He has since proposed major changes to Medicaid, but he has not yet moved to kill the expansion.

Still, Alker said Trump’s win puts the block grant idea front and center in January. And an agreement to do it could give states flexibility to make cuts in federally required benefits, such as health screenings for infants and children.

“I would be very concerned about what could happen,” Alker said.

How Tiny Are Benefits From Many Tests And Pills? Researchers Paint A Picture

How Tiny Are Benefits From Many Tests And Pills? Researchers Paint A Picture

Mammograms are said to cut the risk of dying from breast cancer by as much as 20 percent, which sounds like an invincible argument for regular screening.

Two Maryland researchers want people to question that kind of thinking. They want patients to reexamine the usefulness of cancer exams, cholesterol tests, osteoporosis pills, MRI scans and many other routinely prescribed procedures and medicines.

And they want to convince them with statistics — but don’t worry! They promise not to use algebra or spreadsheets. Or even numbers.

Health costs continue to grow much faster than the economy’s ability to pay them. Partly as a result, scrutiny of potentially unneeded and harmful treatment has never been more intense.

Nearly three physicians in four surveyed by the American Board of Internal Medicine said unnecessary tests and procedures are a serious problem. The authoritative National Academy of Medicine estimated that 30 percent of all health spending — $750 billion — is wasted on fraud, administration and needless procedures.

But even doctors often don’t understand the tradeoffs involved in many tests and medicines, says Dr. Andrew Lazris, a Maryland internist. When they do, they have trouble explaining them to patients.

To change that, Lazris and environmental scientist Erik Rifkin are trying to popularize an intuitive, pictorial way of showing just how few people are helped — and how many are even harmed — by many common procedures.

Health is best discussed in the language of risk and probability, but the $70 billion spent on long-shot government lotteries every year suggests that Americans are a bit challenged in that regard. Behavioral psychologists have confirmed what a French writer observed in the 1600s: “Each believes easily what he fears and what he desires.”

Especially about health. Lazris and Rifkin want to give people a more realistic way of evaluating medical hopes and worries.

They ask patients to picture a hall of people getting a test, operation or prescription. Patients might be shocked at how few in the crowded room get any benefit out of the expensive care.

Their “benefit-risk characterization theater” images vividly show the odds, based on solid research. There’s a sold-out house of 1,000 playgoers or concertgoers, all getting a particular kind of exam, screen or pill.

Then the curtain falls. Everybody helped by the procedure or prescription gets up and leaves. Often it’s only a few people. Sometimes very few. Or nobody.

For breast exams, only one woman in the thousand-person theater receiving mammograms over a lifetime is saved from dying by detecting a cancer before it spreads, according to Lazris’ and Rifkin’s summary of the research.

At the same time, hundreds of women in that audience will receive test results suggesting they have cancer when they don’t — “false positives.” Sixty-four get biopsies, which generally involve cells withdrawn through a needle, for nonthreatening lumps.

Ten receive unnecessary treatment including radiation and surgery for lumps that never would have caused a problem.

The theater images show all of that as well, presenting visual demonstrations that the odds of harm, worry or inconvenience caused by the tests are often much higher than the likelihood of benefit.

Drawing conclusions from mammogram studies is contentious. Some reports show greater benefits — as many as five fewer deaths for 1,000 women. For women with a family history of breast cancer, dense breasts and others with higher risks, benefit from screening — perhaps beyond mammograms — is higher than for those with normal risk, researchers say.

But for the average woman the benefit is small by any measure.

Showing all this with theaters “seems like a great idea,” said Dr. Zackary Berger, an assistant professor at the Johns Hopkins School of Medicine who studies patient communication. “It seems pretty intuitive, and that’s the trick. You want to deliver this information in a way that people can really take in.”

Medical decision aids exist online. But doctors may not know about them, Berger said. Even if they do, showing patients requires a computer and a bunch of keystrokes. The theaters are pictures on paper.

What Lazris and Rifkin especially want to combat is the practice of discussing only relative benefits of medical procedures.

Stating that a mammogram lowers mortality risk from breast cancer by 20 percent says nothing about how likely a person is to die of that disease in the first place. Not to mention what the test might cost in pain, harm or hassle.

Cutting risk by 20 percent sounds impressive — until one realizes it might be the difference between five women in 1,000 who don’t get mammograms and die of breast cancer and four women in 1,000 who do get mammograms and die of breast cancer anyway. (Mammograms miss lots of deadly cancers, and some tumors prove fatal even with early detection.)

That’s not much change in absolute risk. The theater images capture that subtlety.

Other procedures and prescriptions show similarly small benefits.

Hip fractures prevented by bone-density pills such as Fosamax, according to Lazris and Rifkin? Roughly five per 1,000 taking the medicine.

Strokes prevented by blood thinner warfarin among patients with atrial fibrillation, a type of irregular heartbeat? Six out of 1,000 — but 12 people out of those 1,000 will suffer major bleeding episodes.

Lives saved per 1,000 men screened for prostate cancer? Zero. Nobody leaves the theater. (It’s unclear whether screening and detection change the course of the disease.) Risks of impotence from surgery or radiation for prostate abnormalities detected by screening that may be nonfatal? Six hundred men get up and walk out.

Lazris and Rifkin say they aren’t pressuring people to avoid tests.

Under the growing philosophy of “shared decision-making,” they just want patients to have a good conversation about what procedures can and can’t do. Then patients decide.

“Whenever I use this, the patients tend to not favor taking the treatment,” Lazris said. However, “there are people who look at the one out of a thousand and say, ‘That looks pretty good. That’s me sitting there. I’ll take it.’”

They published a book in late 2014 on their theater visuals and have tried the images in focus groups. They’re trying to interest insurance companies and health systems.

“When we showed people the theaters and they didn’t have to deal with numbers at all, they all responded positively,” Rifkin said.

What the world needs next is a theater showing how few people win the lottery.

VA Shifts To Clinical Pharmacists To Help Ease Patients’ Long Waits

VA Shifts To Clinical Pharmacists To Help Ease Patients’ Long Waits

Something astonishing has happened in the past year to outpatient treatment at the Veterans Affairs hospital here.

Vets regularly get next-day and even same-day appointments for primary care now, no longer waiting a month or more to see a doctor as many once did.

The reason is they don’t all see doctors. Clinical pharmacists — whose special training permits them to prescribe drugs, order lab tests, make referrals to specialists and do physical examinations — are handling more patients’ chronic care needs. That frees physicians to concentrate on new patients and others with complex needs.

A quarter of primary care appointments at the Madison hospital are now handled by clinical pharmacists since they were integrated in patient care teams in 2015. Several VA hospitals — in El Paso, Texas, and Kansas City, Mo., among them — have followed Madison’s approach and more than 36 others are considering it, according to hospital officials.

“It’s made a tremendous positive impact in improving access,” said Dr. Jean Montgomery, chief of primary care services at the Madison hospital.

That’s critical for the VA, the focus of a national scandal in 2014 after news reports revealed the Phoenix VA hospital had booked primary care appointments months in advance, schedulers falsified wait times to make them look shorter and dozens had died awaiting care. Further investigations uncovered similar problems at other VA facilities. More than two years later, tens of thousands of vets are still waiting a month or two for an appointment, according to the latest data from the VA.

The Obama administration has allowed some veterans to seek care in the private sector if they choose, but VA wait times remain long and more action is needed, the General Accountability Office reported in April.

Expanding clinical pharmacists’ role is a solution.

They receive two more years of education than regular pharmacists and they can handle many primary care needs for patients, particularly after physicians have diagnosed their conditions.

The VA has had them for more than 20 years, but their growing involvement in patient care is more recent. This year it employs 3,185 clinical pharmacists with authority to prescribe medications, order lab tests and perform physical assessments — nearly a 50 percent increase since 2011.

“It’s having a significant impact on reducing wait times and our office is trying to expand more of them nationally to increase access,” said Heather Ourth, national clinical program manager for VA Pharmacy Benefits Management Services.

In 2015, VA clinical pharmacists wrote 1.9 million prescriptions for chronic diseases, according to a report co-authored by Ourth and published in September in the American Journal of Health-System Pharmacy.

A goal is to increase the use of clinical pharmacists to help patients with mental health needs and pain management.

“This helps open up appointment slots for physicians to meet patients with acute care needs,” Ourth said.

Clinical pharmacists’ authority is determined at each VA hospital based on their training and knowledge.

The Madison VA allowed clinical pharmacists to take over management of patients with chronic diseases such as diabetes and high blood pressure, participate in weekly meetings with doctors and other members of patients’ care teams and handle patients’ calls about medications.

They typically see five patients in their office each day, usually for 30 minutes each, and they talk to another 10 by telephone, said Ellina Seckel, the clinical pharmacist who led the changes at the hospital.

Many issues involve adjusting medication dosages such as insulin, which do not require a face-to-face visit. When Seckel sees patients, she often helps them lower the number of drugs they take because they may cause unnecessary complications.

Expanding clinical pharmacists’ role in primary care has cut readmission rates and helped more patients keep their diabetes under control, Seckel said.

VA hospital officials in both Madison and El Paso said they faced challenges initially in persuading doctors to delegate some duties to qualified pharmacists.

“Some physicians feel like it’s a turf war and don’t want to refer their patients because they feel the clinical pharmacist is trying to practice medicine,” said Lanre’ Obisesan, a clinical pharmacist and assistant chief of pharmacy at the El Paso VA.

Even so, the El Paso VA’s average wait time fell from two months to two weeks, he said, after it added several clinical pharmacists and gave them independence to help patients. About 30 percent of the VA patients in El Paso have used clinical pharmacists, Obisesan said.

That share will rise. The hospital now has one clinical pharmacist for every six physicians, but it aims to add more pharmacists to reduce the ratio to 1 to 3.

The Madison VA is close to that ratio now after adding four clinical pharmacist positions in the past year.

Patients there can choose whether to see a doctor or a pharmacist. With approval from primary care physicians, pharmacists took over 27 percent of the follow-up appointments for patients with chronic illnesses, Seckel said.

That shift yields benefits for both doctors and patients, said Montgomery, the head of primary care services at the Madison VA.

Many VA doctors only have time to deal with patients’ acute care issues, such as knee or back pain, with little time to focus on a patient’s multiple chronic illnesses and often a dozen or more medications they may be taking for them.

“The more we can have members of the team to do routine things that do not require a physician’s time the better the quality of the visit and the better patient outcomes,” he said.

Patients seem to like what the hospital is doing.

Stephen Howard Foster saw a clinical pharmacist  recently who told him he could stop taking one heartburn medication and switched him to another medicine to reduce side effects. He said he was comfortable with the pharmacist advising him without first consulting his physician and he saved time.

“This is a good idea rather than put up with normal delays,” said Foster, 51.

Another Madison VA patient, Mike Fonger, 71, saw clinical pharmacist Anita Kashyap recently to get a blood pressure check, lab test results, a review of his medications and to change an ointment he was taking for back and shoulder pain. Kashyap also helped him ease the side effects from the cholesterol-lowering drug he takes by cutting his dosage in half.

“I like the extra attention I get here,” Fonger said.

Family Caregivers Need Help Too

Family Caregivers Need Help Too

Elderly Americans’ well-being is at risk unless the U.S. does much more to help millions of family caregivers who sacrifice their own health, finances and personal lives to look out for loved ones, reported a study released Tuesday.

Nearly 18 million people care for a relative older than 65 who needs help, yet “the need to recognize and support caregivers is among the most significant challenges” facing the nation’s swelling elderly population, their families and society, according to the report from the National Academies of Science, Engineering, and Medicine. Describing family caregiving as “a critical issue of public policy,” a committee of experts in health care and aging said the next presidential administration in 2017 should direct a national strategy to develop ways to support caregivers, including economically.

According to the report, people who help elderly family members with three or more personal tasks a day devote 253 hours a month to caregiving — almost the equivalent of two full-time jobs.

Five years is the median duration that family members care for older adults with high needs, the report said.

For some Americans who accept that responsibility, that can mean taking a less demanding job, foregoing promotions or dropping out of the workforce.

Lost wages and benefits average $303,880 over the lifetimes of people 50 and older who stop working to care for a parent, according to a study cited in the report. That’s not all: A lower earnings history also means reduced Social Security payments for caregivers when they become eligible.

A possible fix for that problem, proposed by researchers in 2009, is to provide caregivers with a Social Security credit for a defined level of deemed wages during a specified time period, the report said.

Leave programs do exist for some workers shouldering caregiving duties, but many lack such job protections.

The federal Family and Medical Leave Act doesn’t cover 40 percent of the workforce. It allows eligible employees to take 12 weeks of unpaid time off to care for certain family members, but the law only applies to those who work federal, state and local governments and private companies with more than 50 employees. But ineligible family relationships for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces and nephews. Many workers can’t afford to give up their incomes for 12 weeks.

In 2011, 17 percent of caregivers didn’t take leave because they feared losing their jobs, according to a national survey cited in the report.

The report recommends that family caregivers receive status as a protected class under existing job discrimination laws and that employers get guidance and training on ways to support workers caring for family members.

Beyond the economic costs of caregiving, the report notes that the social and physical toll of caregiving should get more attention than it does.

“If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs,” the report said.

Instead of delivering “patient-centered” care, health care providers should adopt “family-centered” models that include checking with caregivers to ensure they are healthy and capable of filling the role. The report also recommended wellness visits, counseling sessions and better training for caregivers who must understand increasingly complicated medical instructions.

Dealing with feeding and drainage tubes, catheters and other complicated medical devices causes stress, and the study’s authors noted that caregivers report “learning by trial and error and fearing that they will make a life-threatening mistake.”

The study was funded by 13 private foundations, the Department of Veterans Affairs, and an anonymous donor that requested the National Academies undertake the research in 2014.

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

By Rachel Bluth

Saying Goodbye, The Right Way

Saying Goodbye, The Right Way

Ediccia wanted to be remembered as someone who didn’t give up. Chuck said some of his favorite times were playing baseball with his brothers. Joe said he was the luckiest man in the world.

Abel summed it up this way: “You have a one-way ticket. Don’t waste it!”

They were all nearing death. Some were old, some young. In interviews with Los Angeles artist Andrew George, they shared their biggest regrets, favorite memories and greatest loves.

George set out to photograph and interview people who were dying and at peace with it. He called several local hospices and hospitals to ask for their help finding patients. They all said no.

Finally, Dr. Marwa Kilani, medical director of palliative care at Providence Holy Cross Medical Center in Mission Hills, agreed to collaborate. Whenever she found a patient willing to participate, George headed to the hospital.

He didn’t want to know the patients’ last names, their professions or their diseases. He wanted to know their perspective on their lives, their dreams and their deaths. In addition to asking them questions, he gave each a piece of paper to draw or write whatever they wanted.

The recurrent themes were not surprising. Many talked about gratitude, family, relationships.

And, of course, love.

One man, Jack, confessed that his true love wasn’t his wife, but rather a woman he’d met in Japan in the 1940s who had been sent to a relocation camp. Another, Donald, said he still loved his ex-wife, even though she had married another man.

Sara described the protective power of love: “You can take anything that’s dished out because there’s someone who cares for you.”

George said he was drawn to the project, which he named “Right, Before I Die,” because he wanted people to see death a different way. “This is something people have a tremendous aversion to,” he said. “I wanted to make something provocative … [that] made people pause and addled their brains a little bit.”

If people could diminish their fear of death while young and healthy, he said, they might be able to live more fulfilling lives. George also hopes people will learn from his subjects, who have made sense of the ups and downs in their lives.

The images and words of the 20 people in George’s exhibit — all but one of whom have since died — are on display at the Museum of Tolerance through Oct. 11. Before coming to L.A., the exhibit was at Musea Brugge in Belgium and the Grace Cathedral in San Francisco.

The framed photos hang beneath large windows just inside the entrance to the museum. Beneath each photo are excerpts from the interviews and the subjects’ own handwritten words.

Many of the photos show people in hospital beds. Some have lost their hair or are attached to oxygen tubes. Stuffed animals and flowers sit beside them. Next to one man is a small framed photo of himself as a child.

In the middle of the exhibit is a tall mirror attached to the wall. George said he wants viewers to reflect on the same topics the subjects did, including their own mortality.

The exhibit is sponsored by the Providence Institute for Human Caring, which works to improve end-of-life care for patients and families. Ira Byock, chief medical officer of the institute, said the photographs and interviews invite people to think about living with illness — and about the dying process.

In Los Angeles and across the nation, Byock said, people often don’t die the way they wish.

“You can get the best care for your cancer or heart failure or liver failure,” he said. “And then in the last months, weeks, days of life, you are at high-risk of dying badly, or having a medicalized death experience.”

One of the subjects in the exhibit was Josefina Lopez Aguilar. In her photo, she’s wearing light lipstick, small hoop earrings, and a sagacious smile.

During her interview, Lopez told the artist she wasn’t afraid of dying, that life was simply the “waiting room to death.”

“I feel calm, at ease, because I already know I am going,” she said. “So every night I tell God, ‘You know what you are doing.’”

Lopez died last year at the age of 105, her granddaughter, Claudia Maldonado, said.

Maldonado said her grandmother had been an orphan and had a tough upbringing in Mexico before immigrating to the U.S. and helping raise her grandchildren. She loved to sew, read Spanish-language newspapers and cook elaborate meals for her family.

Maldonado said that when she first heard about George’s project, she and her family were a little skeptical. But then they realized that Lopez would live on through her photograph.

“It’s an honor to her,” she said. “That smile will always be there.”

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

By Anna Gorman

When Pretend Play Is Real For Alzheimer’s Patients

When Pretend Play Is Real For Alzheimer’s Patients

Sitting beside a neatly made crib, 88-year-old Vivian Guzofsky held up a baby doll dressed in puppy dog pajamas.

“Hello gorgeous,” she said, laughing. “You’re so cute.”

Guzofsky, who has Alzheimer’s disease, lives on a secure memory floor of a home for seniors. Nearly every day, she visits the dolls in the home’s pretend nursery. Sometimes she changes their clothes or lays them down for a nap. One morning in August, she sang to them: You are my sunshine, my only sunshine. You make me happy when skies are gray.

No one knows whether she believes she is holding a doll or a real baby. What the staff at Sunrise Senior Living do know is that Guzofsky — who can get agitated and aggressive — is always calm when caring for the dolls.

Nursing homes and other senior facilities nationwide are using a controversial technique called doll therapy to ease anxiety among their residents with dementia. Senior care providers and experts say the dolls are an alternative to medication and help draw in elderly people who are no longer able to participate in many activities.

“A lot of people with Alzheimer’s are bored and may become depressed or agitated or unhappy because they aren’t engaged,” said Ruth Drew, director of family and information services at the Alzheimer’s Association.

Caregivers aren’t trying to make their charges believe the dolls are real infants, and they don’t want to infantilize the seniors, Drew said. They are just “trying to meet them where they are and communicate with them in a way that makes sense to them.”

Other senior facilities that use the dolls include On Lok Lifeways in San Francisco and the Los Angeles Jewish Home in the LA suburb of Reseda. Some, including Texas-based Belmont Village Senior Living, eschew them, arguing that it can be demeaning for seniors to play with dolls.

“They are adults and we want to treat them like adults,” said Stephanie Zeverino, who works in community relations at Belmont Village Senior Living Westwood. “These are very well-educated residents.”

The facility prefers other types of therapy, including art and music, she said. And staff members there work with residents to play brain games that promote critical thinking.

“We want to provide a sense of dignity,” Zeverino said.

Studies on doll therapy are limited, but some research has shown it can reduce the need for medications, diminish anxiety and improve communication, according to Gary Mitchell, a nurse specialist at Four Seasons Health Care in the United Kingdom who has authored a new book about doll therapy.

However, Mitchell acknowledged it is possible that doll therapy, because it can infantilize adults, “perpetuates a lot of stigma with dementia care that we are trying to get away from.”

Some families worry about their relatives being laughed at when they engage in doll therapy, Mitchell noted. He said he understands those concerns, and even shared them when he worked at a senior residential center. But when one resident requested that he allow her to continue caring for a doll, he soon saw the positive impact of the therapy.

Mitchell said it can be very beneficial for some people — especially those who may get easily distressed or pace obsessively. “Having the doll … offers them an anchor or a sense of attachment in a time of uncertainty,” he said. “A lot of people associate the doll with their younger days and having people to care for.”

At Sunrise Beverly Hills, the nursery is set up like a baby’s room. A stuffed bear rests inside the wooden crib. On a shelf above are framed photos of Guzofsky and a few other women who regularly interact with the dolls. A few bottles, a swaddling blanket, a Dr. Seuss book and diapers sit on a nearby changing table.

The nursery is just one of several areas in the Sunrise centers designed to engage residents, said Rita Altman, senior vice president of memory care for Sunrise, which has facilities in the U.S., Canada and the U.K. There are also art centers, offices, gardens and kitchens where residents may find familiar objects from their past.

Altman said the nurseries tend to attract residents who have an instinct to care for babies. Some people, she said, may not be able to talk anymore but still find a sense of security with the dolls. “You can read it in their body language when they pick up the doll,” she said.

Sunrise caregivers also use the dolls to spark conversations by asking questions: How many children do you have? Was your first baby a boy or a girl? What are the best things about being a mom?

The executive director of the Beverly Hills facility, Jason Malone, said he was skeptical about the use of dolls when he first heard about them.

“I almost felt like we were being deceitful,” he said. “It didn’t feel like it was real.”

But he quickly changed his mind when he realized that staff could use the dolls respectfully.

“We don’t want to confuse treating our seniors as children,” Malone said. “That’s not what this activity is truly about.”

Guzofsky began caring for the dolls soon after moving into the facility. When asked what she likes about the dolls, she said, “I love babies. I have some very nice ones back where I live now.”

Guzofsky’s daughter, Carol Mizel, said her mom raised three children and volunteered extensively in Colorado and Mexico before being diagnosed with Alzheimer’s about five years ago. Mizel said she doesn’t see any downside to her mother caring for the dolls. It is “creative way of dealing with her where she is now,” she said.

“I always describe my mother as being … very similar [to] many of my young grandchildren in her cognitive skills,” Mizel added.

For some residents, including 87-year-old Marilou Roos, holding the dolls is one of the only times they interact with the staff. Roos is confined to a wheelchair and rarely speaks. She sleeps much of the day.

“There is not much [Marilou] can participate in,” said Vladimir Kaplun, former coordinator of the secure memory floor. “When she spends some time with the babies, she wakes up and she brightens up.”

On a recent day, caregiver Jessica Butler sat next to Roos, who held a doll against her chest and patted her on the back. She kissed the doll twice.

“The baby’s beautiful like you,” Butler said.

“It’s a boy,” Roos said. “Five months.”

“Is the baby five months?” Butler asked. “You’re doing a good job holding the baby.”

Caring for the dolls is second nature to Roos, who made a career of being a mom to five children and was involved with the PTA, Girl Scouts and other activities, according to her daughter, Ellen Swarts.

Swarts said it’s been difficult to watch the decline of her mother, who hasn’t called her by name in over a year. Watching her with the dolls helps, she said.

“To see the light in her eyes when she has a baby in her arms, I don’t care if it’s real or if it’s pretending,” she said. “If that gives her comfort, I am A-OK with it.”

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

KHN’s coverage of aging and long-term care issues is supported by The SCAN Foundation.

Patients With Dementia Present Communication Challenges In Hospice Care

Patients With Dementia Present Communication Challenges In Hospice Care

Dementia took over Pauline Finster’s 91-year-old mind long ago and she may die without having another real conversation with her daughter.

After Finster broke her hip in July 2015, Jackie Mantua noticed her mother’s speech ebbing until she only said “hi,” or that she felt fine. Mantua last heard Finster speak six months ago.

Finster’s hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won’t look at the dead tissue on her mother’s right foot that is now creeping from the toes to heel.

She has instructed the staff at the AlfredHouse assisted living home in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to hold back the gangrene’s discomfort.

Is that enough? It’s really all she can do for her mother at this point, Mantua said.

Hospice’s purpose, at least one of them, is to ease a dying patient’s pain at the end of life and improve the quality of that life. But what’s to be done when a dementia patient in her waning days can’t communicate her pain or help identify the cause? Or resists taking medications?

All those concerns can be troubling for family caregivers for loved ones with dementia and in hospice care, according to a recent study in the American Journal of Alzheimer’s Disease & Other Dementias.

Families often describe a cancer patient’s last months as stressful but meaningful. That isn’t the case with dementia patients because the disease changes the patient’s personality and causes behavior issues, according to George Demiris, one of the study’s authors and a professor of biobehavioral nursing and health systems at the University of Washington’s School of Nursing.

Caregivers who took part in the study said they worried that their loved ones were in pain, but unable to properly express it — and that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.

Multiple participants described feeling frustrated and defeated by patients’ cognitive difficulties and changing emotions, the study reported. Some described the patients as “prisoners” inside their bodies.

Helping a dementia patient in pain can be challenging for hospice care providers, too.

Previous research, cited in the recent study, found patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.

Other research cited found that hospice nurses caring for such patients frequently asked relatives to interpret patients’ “pain signals” to help them assess pain. For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized his wife was in pain when a home health care aide gave her a bath by observing how she squeezed the aide’s hand.

Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.

Mantua said she watches her mother’s face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.

Recently, Mantua said her mother has been acting “strange.” Instead of her usual vacant but happy smile, Finster looked at her daughter with a “horrified” expression. Mantua told the hospice chaplain that it looked like her mother had seen the devil.

The cause?

“You have no idea because she can’t say anything,” Mantua said. “I was saying ‘What’s wrong? What’s wrong?’ and she’s just looking at me like crazy.”

Finster has had dementia for 10 years. She has spent most of that time in facilities with increasing levels of care, moving from an independent living facility, to assisted living to memory care. Mantua has felt some of the frustration that caregivers of other patients with dementia have experienced. Three or four years ago, when Finster still had a phone in her room, she sometimes called her son Les — Mantua’s older brother — 10 times to leave him the same message that people were coming into her room and stealing her food. She simply forgot that she had called before.

Finster’s years of cognitive decline have taken a toll on Mantua and her family.

“You get to the point you want them to die because it’s hard,” Mantua said. “It’s hard to deal with. It’s a very helpless feeling.”

Now 53, Mantua is a mother of three children between the ages of 27 and 31 and grandmother to twin five-year-old boys. She said she doesn’t have the patience or natural caretaking abilities to tend to her mother full time.

It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study.

“Caregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,” the study said.

For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, said Demiris, which “complicates the caregiving experience.”

Pauline Finster isn’t aggressive anymore. Mantua remembers when Finster’s dementia made her paranoid and angry. She was once so combative, the staff at her former assisted living facility wouldn’t try to feed her unless Mantua or her brother were present.

The decision to begin hospice care wasn’t easy for Mantua or her family.  She said it feels like her mother is already gone.

There isn’t much for Mantua to do when she visits her mother at AlfredHouse. She chatters as Finster dozes, cradling a baby doll that is always with her. Someone at the assisted living home regularly changes the doll’s clothes, which amuses Mantua.

For now, she keeps driving an hour once every other week from her home on Maryland’s Eastern Shore to Finster’s room in Rockville where they wait for the end together.

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

By Rachel Bluth