When B. Paul Turpin was admitted to a Tennessee hospital in January, the biggest concern was whether the 69-year-old endocrinologist would survive. But as he battled a life-threatening infection, Turpin developed terrifying hallucinations, including one in which he was performing on a stage soaked with blood. Doctors tried to quell his delusions with increasingly large doses of sedatives, which only made him more disoriented.

Nearly five months later, Turpin’s infection has been routed, but his life is upended. Delirious and too weak to go home after his hospital discharge, he spent months in a rehab center, where he fell twice, once hitting his head. Until recently he did not remember where he lived and believed he had been in a car wreck. “I tell him it’s more like a train wreck,” said his wife, Marylou Turpin.

“They kept telling me in the hospital, ‘Everybody does this,’ and that his confusion would disappear,” she said. Instead, her once astute husband has had great difficulty “getting past the scramble.”

Turpin’s experience illustrates the consequences of delirium, a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually. The disorder can occur at any age — it has been seen in preschoolers — but disproportionately affects people older than 65 and is often misdiagnosed as dementia. While delirium and dementia can coexist, they are distinctly different illnesses. Dementia develops gradually and worsens progressively, while delirium occurs suddenly and typically fluctuates during the course of a day. Some patients with delirium are agitated and combative, while others are lethargic and inattentive.

Delirium Triggers

Patients treated in intensive care units who are heavily sedated and on ventilators are particularly likely to become delirious; some studies place the rate as high as 85 percent. But the condition is common among patients recovering from surgery and in those with something as easily treated as a urinary tract infection. Regardless of its cause, delirium can persist for months after discharge.

Federal health authorities, who are seeking ways to reduce hospital-acquired complications, are pondering what actions to take to reduce the incidence of delirium, which is not among the complications for which Medicare withholds payment or for which it penalizes hospitals. Delirium is estimated to cost more than $143 billion annually, mostly in longer hospital stays and follow-up care in nursing homes.

“Delirium is very underrecognized and underdiagnosed,” said geriatrician Sharon Inouye, a professor of medicine at Harvard Medical School. As a young doctor in the 1980s, Inouye pioneered efforts to diagnose and prevent the condition, which was then called “ICU psychosis.” Its underlying physiological cause remains a mystery.

“Physicians and nurses often don’t know about it,” added Inouye, who directs the Aging Brain Center at Hebrew SeniorLife, a Harvard affiliate that provides elder care and conducts gerontology research. Preventing delirium is crucial, she said, because “there still aren’t good treatments for it once it occurs.”

Researchers estimate that about 40 percent of delirium cases are preventable. Many cases are triggered by the care patients receive — especially large doses of anti-anxiety drugs and narcotics to which the elderly are sensitive — or the environments of hospitals themselves: busy, noisy, brightly lit places where sleep is constantly disrupted and staff changes frequently.

Recent studies have linked delirium to longer hospital stays: 21 days for delirium patients compared with nine days for patients who don’t develop the condition. Other research has linked delirium to a greater risk of falls, an increased probability of developing dementia and an accelerated death rate.

“The biggest misconceptions are that delirium is inevitable and that it doesn’t matter,” said E. Wesley Ely, a professor of medicine at Vanderbilt University School of Medicine who founded its ICU Delirium and Cognitive Impairment Study Group.

In 2013, Ely and his colleagues published a study documenting delirium’s long-term cognitive toll. A year after discharge, 80 percent of 821 ICU patients ages 18 to 99 scored lower on cognitive tests than their age and education would have predicted, while nearly two-thirds had scores similar to patients with traumatic brain injury or mild Alzheimer’s disease. Only 6 percent were cognitively impaired before their hospitalization.

Cognitive and memory problems are not the only effects. Symptoms of post-traumatic stress disorder are also common in people who develop delirium. A recent meta-analysis by Johns Hopkins researchers found that 1 in 4 discharged ICU patients displayed PTSD symptoms, a rate similar to that of combat veterans or rape victims.

David Jones, a 37-year-old legal analyst in Chicago, said that he was entirely unprepared for persistent cognitive and psychological problems that followed the delirium that began during his six-week hospitalization for a life-threatening pancreatic disorder in 2012. Terrifying flashbacks, a hallmark of PTSD, were the worst. “They discharged me and didn’t tell me about this at all,” said Jones, whose many hallucinations included being burned alive.

Jones’s ordeal is typical, said psychologist James C. Jackson of Vanderbilt’s ICU Recovery Center, a multidisciplinary program that treats patients after discharge.

Vivid Flashbacks

“They go home and don’t have the language to describe what has happened to them,” said Jackson, adding that such incidents are often mistaken for psychosis or dementia. “Some patients have very striking delusional memories that are very clear distortions of what happened: patients who were catheterized who think they were sexually assaulted and patients undergoing MRIs convinced that they were fed into a giant oven.”

Some hospitals are moving to prevent delirium through a more careful use of medications, particularly tranquilizers used to treat anxiety called benzodiazepines, which are known to trigger or exacerbate the problem. Others are trying to wean ICU patients off breathing machines sooner, to limit the use of restraints and to get patients out of bed and moving more quickly. Still others are trying to soften the environment by shutting off lights in patients’ rooms at night, installing large clocks and minimizing noisy alarms.

A recent meta-analysis led by Harvard researchers found that a variety of non-drug interventions — which included making sure patients’ sleep-wake cycles were preserved, that they had their eyeglasses and hearing aids and that were not dehydrated — reduced delirium by 53 percent. These simple fixes had an added benefit: They cut the rate of falls among hospitalized patients by 62 percent.

Inouye and other experts say that encouraging hospitals to recognize and treat delirium is paramount. They have vehemently argued that federal officials should not classify delirium as a “never” event for which Medicare payment will be denied, fearing that would only drive the problem further underground. (“Never” events include severe bedsores.)

Delirium “is not like pneumonia or a fracture” and lacks an obvious physical indicator, said Malaz Boustani, an associate professor of medicine at Indiana University. He proposes that Medicare create a bundle payment that would pay for treatment up to six months after delirium is detected.

Creating effective incentives is essential, said Ryan Greysen, an assistant professor of medicine at the University of California at San Francisco. Delirium, he said, suffers from a “pernicious know-do gap” — a disparity between knowledge and practice. Many proven interventions, he said, do not seem sufficiently medical. “There’s no gene therapy, no new drug,” Greysen said. “I think we need to put this in the realm of hospital protocol, which conveys the message that preventing and treating delirium is just as important as giving people their meds on time.”

Growing Awareness

Awareness that delirium is a significant problem, not a transitory complication, is recent, an outgrowth of growing expertise in the relatively new field of critical care medicine. The graying of the baby boom generation, whose oldest members are turning 69, is fueling interest in geriatrics. And many boomers are encountering delirium as they help care for their parents who are in their 80s and older.
“In the early 1990s, we thought it was a benevolent thing to protect people from their memories of having a tube down their throat, of being tied down, by using large doses of drugs to paralyze and deeply sedate patients,” Ely noted. “But by the late 1990s, I was just getting creamed by families and patients who told me, ‘I can’t balance my checkbook, I can’t find my car in the parking lot and I just got fired from my job.’ Their brains didn’t work anymore.”

Delirium “is now taught or at least mentioned in every medical and nursing school in the country. That’s a huge change from a decade ago,” said Inouye, adding that research has increased exponentially as well.

In some cases, delirium is the result of carelessness.

One woman said she was repeatedly rebuffed several years ago by nurses at a Washington area hospital after her mother started acting “stoned” after hip surgery. “She said things like ‘I’m having a dinner party tonight and I’ve invited a nice young man to meet you,’ ” recalled the daughter. She asked that her name be omitted to protect the privacy of her mother, now 96, who lives independently in Northern Virginia and “still has all her marbles — and then some.”

“The nurses kept telling me she was off all medication” and that her confusion was to be expected because of her age. “It was only when I insisted on talking to the doctor and going through her chart” that the doctor discovered that a motion sickness patch to prevent nausea had not been removed. “Within an hour, my mother was acting fine. It was very scary because if she hadn’t had an advocate, she might have been sent to a nursing home with dementia.”

Inouye, who developed the Confusion Assessment Method, or CAM scale, now used around the world to assess delirium, said that significant systemic obstacles to preventing delirium remain.

“We need to back up in our care of older patients so that we don’t treat every little symptom with a pill,” she said. Sometimes, she said, a hand rub or a conversation or a glass of herbal tea can be as effective as an anti-anxiety drug.

Two months ago, Inouye, who is in her 50s, was hospitalized overnight, an experience that underscored the ordeal that older, vulnerable patients face. “I was woken out of the deepest sleep every two hours to check my blood pressure,” she said. In addition, alarms in her room began shrieking because a machine was malfunctioning.

“Medical care,” she added, “has evolved to be absolutely inhumane to older people.”

HELP

In an effort to prevent or reduce delirium, Inouye created a program called HELP, short for Hospital Elder Life Program, currently operating in 200 hospitals around the country. While the core of the program remains the same, each hospital implements the program in different ways. Some enroll ICU patients, while others exclude them. A 2011 study found that HELP saved more than $7 million in one year at UPMC Shadyside Hospital in Pittsburgh.

At Maine Medical Center in Portland, HELP is a voluntary program open to patients older than 70 who have been in the hospital for 48 hours or less and do not show signs of delirium. ICU and psychiatric patients are excluded. The program relies on a cadre of 50 trained volunteers who visit patients up to three times daily for half-hour shifts, providing help and companionship and helping them stay oriented.

The CAM scale is built into the hospital’s electronic medical record, said geriatrician Heidi Wierman, who oversees the program and heads a medical team that sees patients regularly. HELP prevented delirium in 96 percent of patients seen last year, she said, adding that resistance by doctors and nurses to the 13-year-old program has been minimal because “we tied the incidence of falls to the prevention of delirium.”

Marylou Turpin, whose husband recently returned to their home outside Nashville, is planning to enroll him at Vanderbilt’s ICU Recovery Center as soon as possible. “I’m just hoping we can have some kind of life after this,” she said.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

March Effectuated Enrollment Consistent with Department’s 2015 Goal

The Affordable Care Act was expected to be a boon for eHealth Inc., the nation’s largest online health insurance broker. After all, the law required most Americans to have coverage, provided government assistance to afford it and allowed Internet brokers to sell Obamacare policies.

But while the health law helped pump up profits and stock prices for many hospitals, insurers and other health companies, eHealth has taken a beating. The company last year lost thousands of customers to the health law’s online exchanges where consumers shop directly for plans and find out if they qualify for subsidies.

The number of individuals covered by health policies from which eHealth earns a commission fell from 796,000 in December 2013, the year before the health law exchanges policies began, to about 585,000 in March. The company swung from a $1.7 million profit in 2013 to a $16 million loss in 2014, and its share price swooned by more than 75 percent.

EHTH data by YCharts

But eHealth might get a boost if the Supreme Court in June strikes down government subsidies for consumers in the 34 states using the federal exchange. More than 8 million people–nearly 9 in 10 of the people who bought coverage on the health law’s exchanges this year–received subsidies. Without subsidies, consumers would have little reason to use the federal exchange.

“Folks who may not be able to get a subsidy may go back to eHealth,” said David Styblo, an analyst with Jefferies LLC in Nashville. But he notes Wall Street is not counting on that partly because there is so much uncertainty about how Congress and the Obama administration would react if the subsidies were invalidated. In addition, some analysts believe that if the subsidies were not restored through a political compromise, many people would go without coverage because they could no longer afford it.

In conference calls with investment analysts, eHealth officials have avoided making it appear that they want the court to strike down the subsidies, but they acknowledge the case could affect the company’s future. “We are thinking a lot about” the court case, CEO Gary Lauer told analysts in April, a month after the company eliminated 160 jobs, or 15 percent of its workforce.  Lauer refused requests for an interview.

EHealth, which is paid a commission by health plans for each policy it sells, is not the only online broker that’s faced new hurdles as a result of Obamacare. But because eHealth, which was founded in 1997, is the only publicly traded online health insurance broker, it’s the only one that must publicly report its performance.

Chini Krishnan, CEO of online broker GetInsured, which like eHealth is based in Mountain View, Calif., said since online brokers have to send consumers’ information through the state and federal exchanges to apply for subsidies, they cannot offer a seamless buying experience to customers. And when consumers think about buying insurance, www.healthcare.gov has become the most well known site.

“Healthcare.gov has a huge megaphone but not the best consumer experience,” Krishnan said.

Even if online brokers can offer an easier and quicker shopping experience, it may be too late. “Folks who are interested in buying coverage know they need to go to healthcare.gov,” Styblo said.

Krishnan does not buy that notion.  He said private industry can come up with better ways to sell and enroll people than the federal government.

Shane Cruz, chief technology officer for online broker GoHealth, says Obamacare has taken the industry on “a real roller coaster ride.” The law expanded the pool of people seeking coverage, but insurers responded by cutting their commission rates to agents. The Chicago-based firm said it sold nearly 500,000 Obamacare plans this year, double the amount it sold in the first year of enrollment. Realizing healthcare.gov is the first thing people will see when they search online for coverage, GoHealth has reached out to consumers by partnering with big box retailers and tax preparers, which are advising customers about the consequences of not meeting the law’s coverage mandate.

EHealth, meanwhile, has turned its focus to selling Medicare Advantage plans on its website. About 16 million of the 50 million people on Medicare are enrolled in the private plans, though most shop for them each year on the government’s www.medicare.gov site. But with 10,000 people a day turning 65, and gaining eligibility for Medicare, even grabbing a small piece of this market could be lucrative for eHealth, Styblo said. In addition to the Advantage plans, eHealth has been active in helping seniors find Medicare supplement plans. The company’s number of Medicare policyholders was 155,600 at end of March 2015, up from 111,700 a year ago.

“It’s a huge marketplace,” Lauer told analysts in April.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

During a recent physical, Jeff Gordon’s doctor told him he may be pre-diabetic. It was a quick mention, mixed in with a review of blood pressure numbers, other vital statistics like his heart rate, height and weight, and details about his prescription for cholesterol medication. Normally, Gordon, 70, a food broker who lives in Washington, D.C., would have paid it little attention.

But his physician, who recently joined MedStar Health, uses the system’s Web portal that allows him to share his office notes with patients. For Gordon, seeing the word “pre-diabetic” in writing made it difficult to ignore, and he took action.

He contacted MedStar about joining a pre-diabetes clinical study. In the course of taking the tests required to participate, the otherwise healthy septuagenarian found out his blood sugar wasn’t elevated enough to qualify.

Still, the experience of seeing the term in his doctor’s notes was a “wake-up call,” inspiring him to pay more attention to his diet and exercise. “It’s harder to ignore when it’s in your face,” he said.

This kind of note-sharing got a kick-start five years ago when researchers from Harvard Medical School joined forces with the Pennsylvania-based Geisinger Health System and Harborview Medical Center in Seattle to launch a high-profile pilot program called Open Notes. The initiative focused on encouraging health care providers to give patients access to doctors’ office notes and then tracked what happened when patients read them. Even before the project, some providers had independently shared notes, but since the organized effort began, interest has grown.

Now, Open Notes estimates about 5 million people see physicians who share notes as part of the initiative, said Tom Delbanco, a professor at Harvard Medical School who has been with the project since it launched. That includes doctors from more than 20 institutions across the country, consisting of major academic medical centers and health systems ranging from the Cleveland Clinic to the Veterans Health Administration to Wellspan, in Maryland and Pennsylvania. And even beyond the project’s participants, there is a trend among physicians — such as Gordon’s doctor — to move in this direction, too.

It’s part of the health system’s growing focus on patient engagement – the idea that more informed people will take better care of themselves, improving their health while lowering costs. This emphasis is driven in part by the federal health law, which links Medicare payments to how well hospitals and doctors do at getting and keeping patients healthy.

The trend is also fueled, experts suggest, by components in the health law and the earlier financial stimulus law that set out financial incentives for doctors to use electronic health records and better connect with patients online.

Advocates say open notes could fundamentally shift the doctor-patient relationship by making it less paternalistic, putting patients in a position to catch mistakes and have more informed conversations with their physicians. But others worry the practice could curb honesty in what doctors write about their patients, or cause confusion if patients misinterpret what’s written.

What doctors write is hardly the stuff of state secrets. Some portions are technical to the point of dullness. Other portions offer clear, valuable advice.

In one note, shared by a patient who requested his name be withheld due to privacy reasons, a doctor wrote, in the context of a potential diagnosis of a hand deformity condition called Dupuytren’s contracture, that the patient’s “sensation is intact in the medial, ulnar and radial nerve distribution.” Hard to understand, yes, but still helpful to the patient for tracking the condition. Even more helpful, perhaps, is the physician’s summary of the condition: “It is very early, so we just need to monitor it.”

Some health care providers, though, worry patients might misuse the information – attempting to diagnose themselves or declining beneficial treatment because they misunderstand what’s written. That isn’t out of the question, said Jan Walker, a research associate at Harvard and Beth Israel Deaconess Medical Center, who also worked on the Open Notes project. “We certainly believe so far, the good far outweighs the bad,” she said.

Kenneth Burman, director of endocrinology at MedStar Washington Hospital Center, said he independently began sharing his notes with patients years ago, mailing them a private copy. When patients read their notes, he said, they can actually “understand the diagnosis and the recommendations.” Patients will look things up, he added, and occasionally correct references to things like family history, or add relevant details he might have missed.

Though he can’t document it, he said patients are generally better about following through with treatment if they get to read their notes. “It helps the patient understand the disease process and what the course of action should be,” Burman said.

How patients respond to this disclosure varies. Some use notes as helpful reminders while others use the information to challenge a physician’s recommendation and help rule out a diagnoses.

For Kent Snyder, 63, a lawyer from Portland, Ore., note-sharing was particularly helpful when he developed arthritis-like symptoms and vision trouble – part of an autoimmune condition doctors still haven’t been able to figure out.

Reading what his doctors had written, Snyder said, helped him focus conversations on “key salient issues” – for instance, correcting physicians about symptoms he’d actually experienced, which in turn allowed them to rule out potential diagnoses.

Looking at his notes, Snyder added, meant he better understood why doctors ordered certain procedures or treatments.

“It’s not just money – I don’t want to take an antibiotic unless I absolutely have to,” he said. “I don’t want to have a test if I don’t need it.”

Patients’ abilities to fix errors in their records could encourage providers to adopt note-sharing, especially if it could reduce the odds of doctor mistakes, said Steven Weinberger, CEO of the American College of Physicians, which represents internal medicine doctors.

But while doctors and patients said they knew anecdotally of patients finding and fixing mistakes when looking at their notes, Walker said there’s no research measuring how common it is and what effect it could have on patient outcomes or satisfaction.

Some physicians worry sharing notes could require them to change what they write so it’s easier for patients to understand, Weinberger said. Peter Elias, an Auburn, Maine-based doctor, said colleagues often worry they might have to omit things for fear of confusing or upsetting patients. But, he added, sharing notes makes him have important conversations he might otherwise have skipped.

When patients see what doctors write, he said, “it makes the difficult conversations essential. You can’t skip them anymore.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Many Californians who obtained health insurance last year said they struggled to pay their premiums, although having coverage made them more confident about affording future medical care, according to a survey released Thursday.

Nearly half of newly insured adults in the state said it was difficult to afford the monthly charge and more than a third delayed or went without care, according to the survey conducted by the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

The data highlight that health care costs continue to be a worry for many low-income Californians, even with more affordable insurance options available through Obamacare.

“Most of them are still in somewhat precarious financial positions,” said Rachel Garfield, senior researcher at the foundation.  “Any monthly cost … can be difficult for these families to afford.”

Nevertheless, newly insured Californians appear to be using their coverage. Nearly 60 percent obtained at least one medical service, and almost half got a check-up, according to the survey.

The Affordable Care Act allowed states to expand Medicaid and created health insurance marketplaces in which consumers could receive government financial help to purchase insurance. In California, more than 4 million people obtained coverage through Medi-Cal, the state’s version of Medicaid, and the exchange, known as Covered California.

“We are seeing some ongoing challenges,” Garfield said. “But the coverage is working quite well.”

Even though the monthly  premium was seen as a burden, insured consumers reported that they didn’t have as much trouble paying other medical bills as those who remained uninsured.

Covered California Executive Director Peter Lee said he wasn’t surprised that health care is still expensive for consumers, both in and out of the exchange. He said it’s an issue that Covered California is continuing to work on. The insurance exchange is now negotiating 2016 rates with health plans and recently made changes so more of consumers’ medical visits are covered. “It’s not just about keeping premiums low today,” Lee said. “We have to address underlying health care costs.”

Lee said he was encouraged by the findings that high percentages of consumers are getting preventive treatment and that most are able to access care easily.

Not surprisingly, newly insured adults were more likely than those who remained uninsured to have a regular doctor and a usual place to go for health care, according to the survey. For many consumers, that place was a community health center. Health centers made a significant effort to retain patients and attract new ones, and they opened new sites statewide to meet the need.

Some newly insured residents, however, said they had trouble getting medical appointments because of their public or government-subsidized coverage.

While only 3 percent of adults with private plans said a doctor wouldn’t see them, 13 percent of those with Covered California plans and 8 percent of those with Medi-Cal said providers turned them away. In addition, about a fifth of newly insured adults changed where they went for medical care, with most citing their insurance as the reason.

Sarah de Guia, executive director of the California Pan-Ethnic Health Network, said the survey shows that more emphasis is needed on helping consumers understand their coverage. If people don’t know what their plans cover, they might get stuck with unexpected costs, she said. About two-thirds of newly insured Californians said they understood what their plan covered, compared to about 80 percent of those who had insurance previously, the study reported.

Researchers recommended additional education and outreach to those remaining uninsured about their options and to the newly insured about their plans and insurance in general.

The statewide survey,  funded by the Blue Shield of California Foundation,  was based on interviews conducted with 4,555 adults in late 2014. The margin of sampling error was plus or minus two percentage points.

agorman@kff.org

Kaiser Health News receives funding from the Blue Shield of California Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Diane Schoenfeld comes every Friday to the Chaparral House nursing home in Berkeley, Calif. to spend time with her aunt, Lillie Manger.

“Hi Aunt Lill!” she says, squatting down next to her aunt’s wheelchair, meeting her at eye level.

Manger is 97. She has straight white hair pulled back in a neat bun today. It’s tied with a green scarf, a stylish reminder of the dancer she used to be.

They go together to the dining room to look over family pictures. Manger needs to be reminded who is in them. Including one of herself. “That’s me?” asks Manger. “That’s you,” her niece confirms.

“Am I supposed to remember?” says Manger.

Schoenfeld smiles at her encouragingly: “I don’t know if you’re supposed to. It’s OK either way.”

Manger has dementia. Schoenfeld is her “surrogate decision maker” meaning that, legally, she is the person who makes decisions about Manger’s health care. Schoenfeld says Chaparral House is the second nursing home where Manger has lived. The first was 45 minutes away, and Schoenfeld wasn’t able to visit as often.

At that first nursing home, caregivers recommended antipsychotic sedatives for Manger’s behaviors, like crying out and outbursts. Schoenfeld wasn’t thrilled about the idea but agreed to it, thinking her aunt might get better care, if staff members weren’t unhappy with her behavior.

Coming Out of a Fog

Two years later, Schoenfeld moved her aunt to Chaparral House, to have her closer. By this time, Manger appeared to be in a fog. Eventually, Schoenfeld broached the idea of weaning her aunt from the medication. As soon as they did, she says things turned around.

“I could see her personality again, I was so happy,” Schoenfeld said. “My sister came to visit and (Aunt Lill) used my sister’s name and clearly recognized her, which we had not seen in the years that she was on the medication. I only wish I had done that sooner.”

Schoenfeld says it just didn’t feel right to have her aunt sedated. “If a baby is crying, I mean most people will go to a baby and comfort them. They won’t try to ignore them and drug them,” she says.

KJ Page, administrator of Chaparral House, shares that philosophy. Page says in many cases dementia patients came to their facility with a prescription to be given antipsychotics half an hour before bathtime. Then, a number of years ago she read a book called Bathing Without a Battle about bathing dementia patients and why it can be such a challenge.

She asks people to imagine putting yourself in the place of the nursing home resident. “A person they didn’t know, couldn’t recognize, comes to take off their clothes,” she says. “Ah! No wonder they’re screaming and fighting and kicking!”

Page says after that “Aha!” moment, the staff came to a new agreement. The residents were not out running marathons, for instance, or other sweat-inducing activities, so regular showers weren’t necessary. Instead, residents would have a regular caregiver do simple sponge baths.

Page says the results inspired further changes.

“It just rolled into what else are they fighting for, and why do we need to have a fight?” Page says, “What can we do to make it easier for people and the staff? And that’s how we approached it from there on.”

It worked. While Page says antipsychotics do have a place for some people, not one of Chaparral House’s dementia patients is currently taking the medications.

Grading Nursing Homes on Avoiding Antipsychotic Drugs

Chaparral House’s experience is unusual. In California nursing homes, just over 15 percent of dementia patients are on these drugs. That’s far more than advocates say is necessary. But that number is actually down from almost 22 percent just three years ago. That’s when the federal government began regulating their use for dementia in nursing homes. This came in response to several studies warning the medicines had serious risks including, strokes, falls and even death.

The new guidelines stipulate that nursing homes are graded on the percent of their dementia patients receiving antipsychotic medications. That figure becomes part of their rating on Nursing Home Compare, a tool from Medicare that helps consumers compare information about nursing homes.

The drugs are traditionally deployed to control what is seen as problem behaviors. Reducing the medication requires new approaches and retraining staff to deal with people with dementia.

Caroline Stephens, assistant professor at the University of California – San Francisco School of Nursing, who specializes in psychiatric care for the elderly and long-term care policy, says that the new regulations have had a positive impact on staff. “They’re now realizing we don’t have to reach for the medication and they’re getting to think creatively about what we can do for this resident.”

Clinicians Become ‘Good Detectives’

As a consultant at the Hayward Healthcare & Wellness Center nursing home in Hayward, Calif., Stephens helps train nurses and staff on person-centered care, being attentive to the cues that people give and trying to understand what is bothering them, even if they can’t communicate it directly.

Stephens says the new regulations have given more credence to this medical approach. She describes one of her success stories helping a dementia patient who was always fighting to leave the facility at the end of the day.

“They felt they needed to catch the bus, they had to get home because they need to take care of their daughter,” she says.

Instead of physically restraining the person or prescribing medication, Stephens says they put a sign on the door that said, simply, “It’s a holiday; buses aren’t running today.” The sign worked. The person stopped fighting to leave and there was no need for antipsychotic medication.

At another nursing home, Stephens consulted with staff about a resident who was disruptive and constantly wandered at night — including into other patients’ rooms. He had been given an antipsychotic to control his behavior. But in a deeper look at his background, staff learned that he’d worked as a night security guard for most of his adult life.

The staff came up with a new plan. They gave the resident a badge and clipboard and walked with him on an abbreviated set of “evening rounds.” Sure enough, after that he’d willingly go to bed, and they were able to take him off medication.

Stephens says when the patients themselves can’t communicate, it’s vital to talk to family, to find out what the person did for a living and what they enjoyed in life.

“It is our job as clinicians to be good detectives,” she explains.

This is especially important as nursing homes serve an increasingly diverse clientele. Stephens says the nursing home model was built around an older, white, female patient. Today, the demographics have changed.

At Hayward Healthcare and Wellness, she says, “There are probably 15 different racial groups and a minimum of five languages spoken.”

Risk of Cherry-Picking Patients

One of the big advocates for the federal regulations was Tony Chicotel, staff attorney with California Advocates for Nursing Home Reform. He welcomes the guidelines but says he has noticed a concerning unintended consequence.

While across the state the overall rate of antipsychotic use has dropped, he says that several hundred nursing homes have rates that have either stayed the same or increased, in some cases almost doubled.

Chicotel says that in an effort to decrease their patients on antipsychotics to get better ratings, some facilities may be cherry-picking patients, essentially warehousing the hardest to wean from anti-psychotics in the bleakest facilities.

Chicotel says families and caregivers can look up a nursing home’s antipsychotic drug use rates as well as other drug usage on websites including Nursing Home Compare.

Still, these guidelines and ratings only cover nursing homes. Chicotel says increasingly he is fielding calls from families worried about the use of antipsychotics in assisted living and home care settings, which don’t fall under the regulations.

“We need to be more proactive about trying to get data for assisted living facilities and reconfiguring our message so it’s more applicable to assisted-living facilities,” Chicotel says.

Earlier this year, the GAO released a report urging HHS to expand their regulation of antipsychotics in dementia patients to settings other than just nursing homes.

UCSF professor Stephens says this points to retraining ever more medical professionals in patient-centered care, eliminating the need for patients to be medicated as a form of restraint.

“If we can train generalists, I think we can make some headway,” she says.

Rachel Dornhelm wrote this piece with support from the Journalists in Aging Fellows Program of the Gerontological Society of America and New America Media, sponsored by the AARP. It appeared first on KQED’s State of Health blog.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Medicare’s hospice benefit covers services not only for a terminally ill beneficiary. Family caregivers also can receive grief and loss counseling for up to a year following the beneficiary’s death. However, a recent study found that hospice services had only a modest impact on symptoms of depression in surviving spouses.

The study, published online in JAMA Internal Medicine earlier this week, examined symptoms of depression among 1,016 surviving spouses who were interviewed as part of the Health and Retirement Study, an ongoing survey of a representative sample of adults older than age 50. The data was linked to Medicare claims.

More than half of the spouses experienced a worsening of their depressive symptoms following their loved one’s death, regardless of whether they used hospice, the study found.

Of the surviving spouses whose depressive symptoms improved, 28 percent were married to hospice users, while 22 percent were married to those who did not use hospice. The study could not determine how many of the spouses received bereavement benefits because that service is not billed separately from other Medicare hospice services.

As a believer in the benefits of hospice, lead author Katherine Ornstein, an epidemiologist at the Icahn School of Medicine at Mount Sinai in New York, called the modest impact of hospice on depressive symptoms of surviving spouses “disappointing.”

However, “I think it’s more of an opportunity to say hospice already has a system set up to help families, and what more can we do?”

The bereavement services that hospices offer vary. They may include support groups, memorial ceremonies and educational materials in addition to cards or telephone calls expressing sympathy and support.

An editorial accompanying the study noted that end-of-life care may itself have an antidepressant effect on surviving spouses. Hospice services can ease the caregiver’s burden and offer respite from tending to the spouse’s physical and emotional needs. In addition, “Hospices may also promote the spouse’s preparation for the patient’s impending death and may combat feelings of isolation and helplessness by providing social interaction and professional support,” write the authors, Holly G. Prigerson of Cornell University and Kelly Trevino of the Weill Cornell Medical College in New York.

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

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Democrats want wider health care coverage. Republicans want privatization of government programs. They’re both getting their way with the Medicaid program for children and the poor.

Medicaid’s expansion under the Affordable Care Act has drawn lots of attention, although some states have resisted. Medicaid, which serves nearly 68 million Americans, is state-run with the majority of its finances coming from Washington.

But Medicaid management has also undergone profound change, with states increasingly outsourcing the care to private insurers such as Aetna, Centene and UnitedHealthcare.

Avalere Health projects that 76 percent of beneficiaries  in Medicaid and the related Children’s Health Insurance Program (CHIP) will be covered by private managed care by 2016, generating billions in profit for insurance-company shareholders. All but a handful of states now contract with private insurers to deliver comprehensive Medicaid care, according to the Kaiser Family Foundation. (KHN is an editorially independent program of the Kaiser Family Foundation.)

In an attempt to have regulation catch up with reality, the Department of Health and Human Services updated its rules for Medicaid managed care this week for the first time in more than a decade. Proposals include quality-rating systems, profit limits and tighter requirements for doctor and hospital networks.

Here’s why HHS acted:

— It’s not just core Medicaid for the poor that is shifting to managed care. So is CHIP, which covers kids in lower-income families that make too much to qualify for Medicaid. So is long-term Medicaid care for the elderly and the disabled, which is where the program touches some middle class families.

Among other goals, HHS wanted to harmonize the rules between the programs and the different populations served.

— Managed care is a huge business. Private insurers booked $115 billion in Medicaid revenue last year, according to data compiled from regulatory filings by Mark Farrah Associates and analyzed by Kaiser Health News.

Operating profit on those premiums came to $2.4 billion. Net profit, after accounting for taxes, depreciation and other expenses not directly connected to health coverage, would have been less.

Even so, HHS decided to limit insurer profits by creating a minimum medical loss ratio, similar to standards put in place for other health coverage by the federal health law. Insurers would have to plan to spend at least 85 percent of their revenue on medical care, not administrative cost or profit.

— Capitalizing on “member churn” between Medicaid plans and commercial coverage is a key insurer strategy.

Fluctuating incomes cause people to cycle in and out of Medicaid. When a member gets a job and loses her Medicaid eligibility, her insurer wants to keep the business by signing her up for a commercial plan sold through the health law’s online exchanges.

HHS’ new rules are supposed to control that process — allowing plans to educate members to promote coverage continuity but still prohibiting cold calls, spam and knocks on the door.

— Doctor networks for Medicaid plans aren’t all they’re supposed to be. In a national survey last year by HHS’ inspector general, half the doctors listed in official plan directories weren’t taking new Medicaid patients.

HHS now wants states to certify at least annually, perhaps based on direct queries to doctors, that enough caregivers are in the managed-care network and close enough to plan members to serve them.

— Health-care quality scores are the future. HHS awards stars to Medicare managed care plans for seniors based on benefits, member satisfaction and management of chronic conditions. Medicare has also started grading hospitals with star scores.

The agency hasn’t said whether Medicaid plans will get stars. But it promises some sort of “quality rating” system based on suggestions from stakeholders.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.