Emily Bazar, Author at ��ýҕ�l Health News

Doctor Survived Cambodia’s Killing Fields, but Not Covid

Emily Bazar — Wed, 07 Apr 2021 09:00:00 +0000

Dr. Linath Lim’s life was shaped by starvation.

She was not yet 13 when the Khmer Rouge seized power in Cambodia and ripped her family apart. The totalitarian regime sent her and four siblings to work camps, where they planted rice and dug irrigation canals from sunrise to sunset — each surviving on two ladles of rice gruel a day. One disappeared, never to be found.

Just a few months before the Khmer Rouge fell in January 1979, Lim’s father starved to death, among the nearly of Cambodians who perished from execution, forced labor, starvation or disease in less than four years.

For Lim, the indelible stamp of childhood anguish drove two of her life’s passions: serving people as a physician and cooking lavish feasts for friends and family — both of which she did until she died of covid-19 in January.

Within the week before her death at age 58, she treated dozens of patients who flooded the hospital during the deadly winter covid surge, while bringing home-cooked meals to the hospital for her fellow health care workers to enjoy during breaks.

“These experiences during the war made her humble and empathetic toward the people around her,” said Dr. Vidushi Sharma, who worked with Lim at Community Regional Medical Center in Fresno, California. “She always wanted to help them.”

Lim’s story is one of suffering and triumph.

During the Khmer Rouge’s brutal reign and the Cambodian civil war before it, Lim and her nine siblings attended school sporadically. The ravages of war forced the family first from its small town to the capital, Phnom Penh, and then into the countryside when the Khmer Rouge took power in 1975. As part of its vision to create a , the communist group split families and relocated residents to rural labor camps.

Lim survived the work camps because she was smart and resourceful, said her youngest brother, Rithy Lim, who also lives in Fresno. She dug ditches, hauled clay-like dirt on her back, built earthen dams in the middle of a river during monsoons — all with little food or rest, he said.

She also became a skillful hunter and fisher, and learned to identify plants that were safe to eat.

“You cannot imagine the horrible conditions,” he said. “Think of it as a place that you live like wild animals, and people tell you to work. There’s no paper, no pens. You sleep on the ground. We witnessed death of all sorts.”

Vietnamese troops liberated Cambodia from the Khmer Rouge in 1979. Later that year, Lim, her mother and siblings sneaked into Thailand. “The whole family walked through minefields,” Rithy Lim recalled. There, they waited and worked in refugee camps. At one camp, they met a dentist from California’s Central Valley who was on a medical mission.

When Lim and her family arrived in the U.S. in 1982, they landed in Georgia. But she and an older brother soon moved to the small town of Taft, California, about 45 minutes west of Bakersfield, at the invitation of the dentist they’d befriended at the Thai refugee camp.

When she hit the ground, the 4-foot-11 dynamo, then 19, was driven by “pure determination,” Rithy Lim said.

Within two years, Linath Lim learned English, earned her GED and graduated from Taft College — “boom, boom, boom,” her brother recalled. (She learned to make traditional, middle-America Thanksgiving dinners when she worked at the community college’s cafeteria, which she would later cook for scores of friends and family.)

She went on to attend Fresno State and then the Medical College of Pennsylvania, sleeping on friends’ couches, borrowing money from other Cambodian refugees and scraping by.

“Imagine not having any money, studying alone, sleeping in someone else’s living room,” Rithy Lim said.

Lim became an internal medicine doctor “because she always wanted to be really involved with a lot of patients,” Rithy Lim said. After her residency, she returned to the Central Valley to practice in hospitals and clinics in underserved communities, including Porterville and Stockton, where some of her patients were farmworkers and Cambodian refugees.

California has the largest Cambodian population in the country, with roughly 89,000 people of Cambodian descent in 2019, according to a Public Policy Institute of California analysis of data.

Twice, Lim joined the on weeklong volunteer trips to Cambodia, where she and other doctors treated hundreds of patients a day, said Dr. Song Tan, a Long Beach, California, pediatrician and founder of CHPAA.

“She was a kindhearted, very gentle person,” recalled Tan, who said he was the only member of his family to survive the Khmer Rouge. “She went beyond the call of duty to do special things for patients.”

Most recently, Lim worked the swing shift, 1 p.m. to 1 a.m., at Community Regional Medical Center. She admitted patients through the emergency room, where she was exposed to countless people with covid. She worked extra shifts during the pandemic, volunteering when the hospital was short-staffed, said Dr. Nahlla Dolle, an internist who also worked with Lim.

“She told me there were so many patients every day, and that they didn’t have enough beds and the patients had to wait in the hallway,” Tan said.

Colleagues said she was aware of the risks but loved her job. Lim, who was single and didn’t have kids, drew happiness from celebrating others’ joys. After getting home from work in the small hours, she slept for a bit, then got up to cook. Her specialties were Cambodian, Thai, Vietnamese and Italian food. She sometimes ordered a whole roasted pig that she transported to the hospital. Her memorable Thanksgiving dinners served 70 or more people.

“For any occasion that comes up — if it’s a birthday, if it’s a baby shower, if it’s Thanksgiving — she would cook, she would order food and bring everybody together,” Dolle said. “She loved to feed people because she experienced famine and lack of food.”

The week before she died, Lim cooked for her colleagues almost every day, and threw a baby shower for Sharma, complete with chicken calzones and blueberry cake.

“Every day, we were having lunch together,” Sharma said. “She did the shower, and then she’s gone.”

Lim, who had health problems including diabetes, had not been vaccinated. Family and friends had urged her to take care of herself, and to check her blood sugar and take her medications. “She would care about everyone but herself,” Sharma said.

On Jan. 15, Lim told friends by phone that she was exhausted, achy and having trouble breathing. But she said that she would be fine, that she just needed to rest. Then she stopped responding to calls and texts.

When she didn’t show up for work a few days later, her brother went to check on her at home and found her on the couch, where she had died.

Now her brother and colleagues are haunted by what-ifs over the loss of a remarkable woman and doctor: What if I had checked on her sooner? What if she had been vaccinated? What if she had gotten care when she started feeling ill?

“To have someone who has been through all that in her childhood and then flourish as a physician, a human being, coming to a new country, learning English, going to school and college without having much financial support, it’s phenomenal,” Sharma said. “It’s unbelievable.”

This story is part of “Lost on the Frontline,” a project from and Kaiser Health News that aims to document the lives of health care workers in the U.S. who die from COVID-19, and to investigate why so many are victims of the disease.

This story was produced by , which publishes , an editorially independent service of the .

��ýҕ�l Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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Without Obamacare Penalty, Think It’ll Be Nice To Drop Your Plan? Better Think Twice

Emily Bazar — Wed, 05 Dec 2018 10:00:12 +0000

Dana Farrell’s car insurance is due. So is her homeowner’s insurance — plus her property taxes.

It’s also time to re-up her health coverage. But that’s where Farrell, a 54-year-old former social worker, is drawing the line.

“I’ve been retired two years and my savings is gone. I’m at my wit’s end,” says the Murrieta, Calif., resident.

So Farrell plans — reluctantly — to drop her health coverage next year because the for not having insurance is going away.

That — which can reach thousands of dollars annually — was a key reason that Farrell, who considers herself healthy, kept her coverage.

Now, “why do it?” she wonders. “I don’t have any major health issues and I’ve got a lot of bills that just popped up. I can’t afford to pay it anymore.”

Farrell is among millions of people likely to dump their health insurance because of a provision in last year’s Republican tax bill that , starting in 2019, by zeroing out the fines.

The Congressional Budget Office that the repeal of the penalty would move 4 million people to drop their health insurance next year — or not buy it in the first place — and 13 million in 2027.

Some people who hated Obamacare from the start will drop their coverage as a political statement. For people like Farrell, it’s simply an issue of affordability.

Since Farrell started buying her own insurance through the open market in 2016, her monthly premium has swelled by about $200, she says, and she bears the entire cost of her premium because she doesn’t qualify for federal ACA tax credits. Next year, she says, her premium would have jumped to about $600 a month.

Instead, she plans to pay cash for her doctor visits at about $80 a pop, and for any medications she might use — all the while praying that she doesn’t get into a car accident or have a medical emergency.

“It’s a situation that a lot of people find themselves in,” says Miranda Dietz, lead author of a that projects how ending the penalty will affect California.

Dana Farrell

People like Farrell whose incomes are too high to qualify for tax credits are especially vulnerable, says Dietz, a research and policy associate at the University of California-Berkeley Center for Labor Research and Education. They must pay the entire premium themselves.

Premiums, even for a bronze plan with a deductible of , are enormous in some cases, she says. “The state’s done a great job of implementing the ACA,” she says, “but there are still Californians who just find insurance out of reach.”

Up to 450,000 more Californians may be uninsured in 2020 as a result of the penalty ending, and up to 790,000 more by 2023, boosting the state’s uninsurance rate for residents under 65 to 12.9 percent, according to the study. The individual market would suffer the biggest losses.

Covered California, the state health insurance exchange, predicts that enrollment in the individual market — both on and off the exchange — could drop by 12 percent next year, says agency spokesman James Scullary.

Exchange officials also blame the end of the penalty for a average increase in premiums, because the departure of some healthy people from the market will lead to a sicker and costlier insurance pool.

Health insurance can be difficult to afford, but going without it is a “bad gamble,” Scullary says. Keep in mind: More than 22,000 Covered California enrollees broke, dislocated or sprained arms or shoulders in 2017, and 50,000 enrollees were either diagnosed with — or treated for — cancer, he explains.

“We know that none of those people began the year thinking, ‘This is when I’m going to break my arm,’ or ‘This is the year I get cancer,’” he says.

If you’re considering dropping your plan and risking the devastating financial consequences of an unexpected medical expense, check first to see if you can lower your premium.

“A big mistake for people is to look at the notice they get for their current health insurance and see it’s going up a lot and then throw up their hands and decide they’re going to go without,” says Donna Rosato, a New York-based editor at Consumer Reports who covers health care cost issues.

“Before you do that, look at other options.”

The most important thing to do is seek free help from a certified insurance agent or enrollment “navigator.” You can by clicking on the “Find Help” tab on Covered California’s website, .

Next, see if you can qualify for more financial aid. For instance, if is close to the threshold to qualify for tax credits through Covered California or another Obamacare insurance exchange — about $48,500 for an individual or $100,000 for a family of four this year — check with a financial professional about adjusting it, Rosato suggests. You might be able to contribute to an IRA, 401(k) or health savings account to lower the total, she says.

Beyond that, be flexible and willing to switch plans, she advises. Consider different coverage levels, both on and off health insurance exchanges. If you’re in a silver-level plan (the second-lowest tier), you might save money by purchasing a less expensive bronze-level plan that has higher out-of-pocket costs but would protect you in case of a medical emergency.

This year, Farrell got a clean bill of health from her doctor after a round of tests. She’s nervous about being without coverage next year, but feels she doesn’t have a choice.

“It’s going to be the first time in my life I’m not going to have insurance,” she says.

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Time For That Colonoscopy? Probe Your Doc First On How The Scopes Are Cleaned

Emily Bazar — Wed, 25 Jul 2018 09:00:04 +0000

After a colonoscopy two years ago, Patti Damare felt so delirious and weak that she couldn’t stand on her own.

That was on a Friday, and she chalked up her symptoms to lingering effects of anesthesia. On Saturday, the San Marcos, Calif., woman wondered if she had contracted a killer flu or urinary tract infection.

The next day, she couldn’t get out of bed.

By Monday, it was almost as if her body had been beaten with a baseball bat, she recalls. “It felt like what you imagine dying feels like,” says Damare, 53, a retired flight attendant.

That night, emergency room doctors diagnosed her with a raging E. coli infection and , a potentially . Her doctors told her the infection likely stemmed from her colonoscopy, she says.

“The doctor in the ER told me that if I had waited one more day, I would have died,” she says.

Physicians use a variety of reusable medical scopes to peer into the body — and they can pose a deadly infection risk when not cleaned properly.

Patti Damare lies in the ER in August 2016, newly diagnosed with an E. coli infection and sepsis that her doctors believed stemmed from her colonoscopy. (Courtesy of Patti Damare)

Complicated scopes called , used to in the bile and pancreatic ducts, to at least 35 deaths in the U.S. since 2013, including three at the UCLA Ronald Reagan Medical Center.

But less complex scopes also pose contamination risks — and they’re used on far more people: Each year in the United States, doctors perform colonoscopies and 7 million endoscopies of the upper GI tract.

Two recent studies underscore the threat: published in March found that 71 percent of reusable medical scopes deemed ready for use on patients for bacteria at three major U.S. hospitals.

Then a May study concluded that infection rates are far higher than previously believed after colonoscopies and upper GI endoscopies. For instance, the infection rate within seven days of a routine colonoscopy at an outpatient surgery center is roughly 1 in 1,000, the determined.

It was previously thought to be about 1 in a million.

Susan Hutfless, senior author of the May study and an assistant professor at Johns Hopkins, says she was “very surprised” by the findings, adding that patients must start grilling doctors about treatment options and the cleanliness of the scopes.

You shouldn’t do it as I did at my first colonoscopy in January: I was on the gurney, waiting to be rolled into the operating room when I asked the doctor, “Your scopes are clean, right?”

You can guess what he said.

I might have asked earlier but, as Hutfless says, “the more people ask, the more cleanliness will improve.”

No matter which scope procedure your doctor recommends, start by applying a risk-benefit analysis to your situation, experts say.

In the case of colonoscopies, which can detect colon cancer, many experts believe the benefit outweighs the risk of infection.

“ saves lives,” says Dr. James McKinnell, assistant professor of infectious disease at UCLA and the research institute. “The benefit is a reduction in the risk of death.”

Besides, most infections related to scopes are treatable and short-lived, adds Sylvia Garcia-Houchins, director of infection control for the , which accredits many U.S. hospitals and surgery centers.

It can be republished for free.

As part of your deliberations, consider discussing potential alternatives with your doctor, says Lisa McGiffert, former director of Consumers Union’s Safe Patient Project and now a member of the . “I would say, ‘Is there another procedure that you could identify that’s not invasive?’”

If there isn’t, start asking questions.

First, make sure you’re seeing a reputable provider with lots of experience. Ask how many procedures he has performed. If yours is the first, or among the first few, consider going elsewhere or asking for someone to supervise the procedure.

You can also ask your doctor if she knows the facility’s infection rates, says McGiffert, who is based in Austin, Texas. “If they say no, I would say ‘Why not? Why aren’t you keeping track of this?’”

If your doctor gives you an infection rate but it’s confusing, remember: “The closer to zero the better,” McGiffert says.

Next, ask about . McKinnell offers some questions: Do you clean and reprocess your scopes? Do you hang them to dry in a place that is clean? After they’ve been cleaned, do you check them for contamination?

Without wading into every scientific detail, you want to get a general sense that the doctor or facility has an established cleaning process.

The Center for Global Health Policy’s “Science Speaks” blog notes that PEPFAR recently released its 8th annual report (.pdf) to Congress. “The five-page document outlines the program’s progress as of the end of fiscal year 2011 in various areas,” including the provision of antiretroviral treatment, care, and support; HIV testing and counseling for pregnant women; and prevention of mother-to-child transmission services, the blog notes. The report includes sections on “leading with science,” “smart investments,” “country ownership,” and “shared responsibility,” according to the blog (Mazzotta, 5/4).

“I want to know there’s a person cleaning the scopes who’s dedicated to cleaning the scopes. If they are, they’ve got the system down pat,” Garcia-Houchins says.

You can also research whether a hospital or surgery center in your area uses single-use endoscopes, which are becoming more accepted and prevalent.

Ultimately, trust your gut.

“If you don’t feel comfortable and those alarms are going off, you need to stop the bus,” Garcia-Houchins says. “You just have to do it.”

Damare agrees. After her bout with sepsis in August 2016, which she says sucked the life out of her for a year, she doesn’t plan on getting a colonoscopy again.

But if you do, remember that you — not the doctor — are in charge, she advises.

“This is your whole life,” she cautions. “You have to feel really good about what your choice is.”

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When Erratic Teenage Behavior Means Something More

Emily Bazar — Wed, 13 Jun 2018 09:00:03 +0000

Mary Rose O’Leary has shepherded three children into adulthood, and teaches art and music to middle-school students.

Despite her extensive personal and professional experience with teens, the Eagle Rock, Calif., resident admits she’s often perplexed by their behavior.

“Even if you have normal kids, you’re constantly questioning, ‘Is this normal?’” says O’Leary, 61.

Teenagers can be volatile and moody. They can test your patience, push your buttons and leave you questioning your sanity — and theirs.

I’m not being flip. Mental health challenges are a serious — and growing — problem for teenagers: Teen and young-adult suicide has since the 1940s. The rate of 12- to 17-year-olds who struggled with clinical depression increased by 37 percent in a decade, according to a recent .

And schizophrenia and other psychotic disorders often manifest themselves in adolescence.

In fact, half of all mental health conditions emerge by age 14, and three-quarters by 24, says Dr. Steven Adelsheim, director of the , part of the university’s psychiatry department.

For parents, it’s often hard to separate the warning signs of mental illness from typically erratic teenage behavior.

When O’Leary’s son, Isaac, now 23, was a teen, he had two run-ins with police — once for hosting a wild party while his mom was away, and again when he and a friend climbed up on the roof and challenged each other to shoot BB guns.

O’Leary dismissed those incidents as teenage pranks. But she did start to worry when she was in the midst of divorce proceedings with her then-husband and noticed that Isaac started exhibiting some unusual behavior. He complained of stomachaches and racked up absences from school.

That’s when she decided it was time for the family to see a therapist. “It’s a question of what’s normal for my kids,” she explains.

O’Leary is right. Mental health experts say the first step in recognizing possible mental illness in your children is to know their habits and patterns — to spot when they deviate from them — and to create an environment in which they feel comfortable talking with you.

Instead of asking your teen to talk, share an activity that will give your child the chance to open up: Cook dinner together, walk the dog, take a drive, says Tara Niendam, an associate professor in psychiatry at the University of California-Davis.

“You just want to know how they’re doing as a person. How are things going at school? How are their friends? How are they sleeping?” she explains.

As part of getting to know your teen, monitor and limit your child’s social media activity, says Dr. Amy Barnhorst, vice chair for community mental health in the UC-Davis psychiatry department.

“Social media gives us this important window into what’s going on in teenagers’ lives,” she says.

Once you know your child’s baseline, you’ll be more attuned to signs of mental illness: persistent changes in your child’s everyday life that last more than a week or two.

Be aware of disruptions in sleep, appetite, grades, weight, friendships — even hygiene.

Maybe your son is spending even more time alone in his room. Perhaps your daughter, who is particular about her appearance, stops wearing makeup and isn’t showering.

“It’s really when you see kids falling off the curve in every sphere of their lives,” Barnhorst says. “They’re having problems with their academics, problems with their family, problems with their friends, problems with their activities.”

Essentially, take note when “there’s a lot of shifting and chaos” in their lives, she adds.

Remember, you’re looking for changes in many aspects of your child’s life that last for a few weeks, not the typical — but temporary — sadness that comes with a breakup or the unfortunate mouthing off you get when you ask your kid to clean his room.

If your child still has the same friends and is participating in the same activities, unpleasant behavior “is not necessarily something to worry about,” Barnhorst says. “That could just be teenagers going through growing pains.”

But some behavioral changes could indicate a deeper problem. For instance, teenagers with depression may be more irritable than usual, Adelsheim says. They might snap at friends or even the family dog, he says.

“Young people will talk about their fuse being shorter than normal,” Adelsheim says. “Things that normally wouldn’t bother them do bother them.”

When you become worried that your child’s behavior may indicate something more serious, offer your child love and support — and seek help, experts say.

(And avoid phrases like “What’s wrong with you?” and “Snap out of it” when talking with your kids, Niendam advises.)

If your child threatens suicide, or you think he’s in imminent danger, take him to the emergency room.

If there’s no immediate danger, start with your child’s pediatrician or primary care physician. In some cases, the pediatrician will be able to address the problem directly — or may refer you to a mental health specialist.

This is where it could get tricky.

You may face a long wait for a specialist — especially if you live in a rural area — and may find that many aren’t accepting new patients. Barnhorst suggests calling your health insurance plan and asking for a list of in-network therapists, psychologists and psychiatrists. Then hit the phone and hope for the best.

“One of the most serious problems we have in this country on the mental health front is the lack of access to care,” says Dr. Victor Schwartz, chief medical officer of , a New York-based organization that works to prevent suicides in teens and young adults. “We haven’t trained enough professionals. They’re not distributed well enough across the country.”

Another option, he says, is to check with nearby universities to see if they have mental health clinics that train students and see patients.

While you’re seeking medical help, don’t forget to contact your child’s school, which may be able to make accommodations such as offering your child extra time for testing, Niendam says.

She also suggests connecting with your local chapter of (namica.org), a grass-roots organization of people whose lives have been affected by serious mental illness.

“If you’re struggling, you can meet other parents and ask their advice,” she says.

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Tax-Funded Mental Health Programs Not Always Easy To Find

Emily Bazar — Mon, 30 Apr 2018 09:00:03 +0000

Back in 2008, Mary Hogden was homeless, living on the streets of Berkeley, Calif.

“I got beat up really badly out there,” says Hogden, 62. “It’s not a safe place for women.”

She landed in the hospital and then in a boarding home for adults with mental illness. But her big break came when she started volunteering for a mental health program called the , run by Alameda County.

Participants, who offer each other support, also advise the county’s behavioral health division on how to better meet consumers’ needs. The county has adopted some of the group’s recommendations, Hogden says.

“People rallied around me when I was unstable and struggling with my mental health,” Hogden recalls.

She didn’t know at the time that the program was paid for by the state’s (MHSA). But after two years as a volunteer, she became a paid staffer and learned that the program wouldn’t exist without that funding.

“I wouldn’t be where I’m at in my wellness and recovery had it not been for the Mental Health Services Act,” Hogden says.

In 2004, Californians approved the act, originally known as Proposition 63, which imposes a 1 percent tax on personal income over $1 million to help counties expand mental health care services.

The tax has raised billions, and Gov. Jerry Brown expects it will bring in in the coming fiscal year.

“Counties were able to take Mental Health Services Act dollars and either revamp existing programs or completely create new programs that didn’t exist at all,” says James Wagner, deputy director of Alameda County Behavioral Health Care Services.

The act has been “wildly successful” at improving the ability of counties to respond to the mental health needs of their residents, he says.

But counties and the state have faced criticism from the , an independent state oversight agency, and others for their implementation of the law. In February, accused counties of hoarding the mental health money — and the state of failing to ensure the money was being spent.

Still, there’s no question “these programs have helped hundreds of thousands of people,” says Heidi Strunk, president of the .

across the state lists page after page of offerings that address homelessness, suicide, caregivers, veterans, children and dozens of other topics and populations, including scholarships for college students pursuing degrees in mental health.

But what’s available — and to whom — depends on your county. For instance, most programs are for low-income residents, but that’s not true across the board. Unfortunately for consumers, researching county programs and determining whether you or your loved ones qualify may not be easy.

“It’s so hard for individuals and families to know what kind of services are available, especially because there’s no statewide standard,” says Jessica Cruz, CEO of , an advocacy group for individuals, and their families, who have been affected by serious mental illness.

“Access is an issue,” Cruz says. “There’s not one singular place to look and see what’s available.”

Strunk’s coalition is advocating for a statewide, interactive map that will allow you to click on your county and see its Mental Health Services Act programs. NAMI California, which compiled the statewide, is working on an update, but that won’t be out until this summer, Cruz says. (Check NAMI California’s website at for the update.)

“We’re still trying to resolve issues with how to get information to the public,” Strunk says.

Until there’s a central information source, you will have to use your research skills, plus a little telephone work.

To get started, Strunk suggests Googling your county’s name and the term “.” Then call that person. You can also find your county’s MHSA plan online.

Some counties have that will help connect you with appropriate programs based on your needs. (In Orange County, for example, it’s 855-625-4657. In Alameda County, dial 800-491-9099. Riverside County residents can call 800-706-7500.)

“Each county webpage looks different,” Strunk warns. “Some counties have super user-friendly landing pages, for some counties it’s buried, and some you can’t find at all.”

MHSA programs primarily serve recipients of Medi-Cal, California’s version of the federal Medicaid program for low-income residents, and uninsured people with serious mental illnesses. But there are also services for a broader range of the population.

About of Mental Health Services Act dollars are earmarked for “prevention and early intervention,” and these are more likely to serve a wider cross section of people.

Sharon Ishikawa, Orange County’s Mental Health Services Act coordinator, points to as one example. The program provides counseling, vocational support and other services to people — and their families — who are confronting challenges related to sexual orientation and gender identity.

“It is open to anybody with or without insurance,” says Dawn Smith, a program manager who oversees several of the county’s MHSA-funded services. “They might have a really high deductible and don’t have a way to pay that or they might not be able to afford the copay.”

But the majority of participants are uninsured, Smith says.

NAMI, which has chapters across the state, operates some MHSA-funded programs on behalf of counties, and eligibility is not based on insurance status, Cruz says.

“For us, anybody’s eligible. Anybody can come to a family-to-family class. Anybody can come to a support group. You don’t have to be referred by the county,” she explains.

NAMI Orange County runs the MHSA-funded program, says Diana Fernandez, one of the peer mentors.

The program is for people, regardless of income, who have a family member or friend who is struggling with mental illness, a learning disorder or a behavioral problem. Participants can have a one-hour phone call each week for up to 12 weeks with peer mentors who have had personal experience finding help for themselves or loved ones, Fernandez explains.

Fernandez has five children, and two have struggled with dyslexia and attention deficit hyperactivity disorder (ADHD).

Last week, Fernandez spoke with a man who told her he felt suicidal. She stayed on the phone and connected him with the county’s crisis assessment team, then waited until she knew he was on his way to the hospital.

That situation was unusual, she says. More typically, Fernandez helps parents of children who are struggling in school, or caregivers who are emotionally and physically spent.

“We assure clients that they are normal and typical for what they’re going through,” she says. “That gives them a feeling of hope they may not have had before.”

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Staying Alive: How To Fight An Opioid Addiction

Emily Bazar — Mon, 02 Apr 2018 09:00:05 +0000

Rule No. 1: Stay alive.

If you or a loved one wants to beat an opioid addiction, first make sure you have a handy supply of , a medication that can reverse an overdose and save your life.

“Friends and families need to keep naloxone with them,” says Dr. David Kan, an addiction medicine specialist in Walnut Creek who is president of the . “People using opioids should keep it with them, too.”

Americans died from opioid overdoses in 2016, victims of a crisis that’s being fueled by the rise of a powerful synthetic opioid called , which is more potent than heroin. Rock stars and had fentanyl in their systems when they died.

People can become addicted to opioids through long-term use, or misuse, of prescription painkillers. In most cases, that , according to the National Institute on Drug Abuse.

If you’re ready to address your own addiction, or that of a loved one, know that you may not succeed — at first. You probably won’t be able to do it without outside help or medications. And you’ll probably have to take those medications for years — or the rest of your life.

“Getting over a drug addiction is a process. There are going to be ups and downs,” says Patt Denning, director of clinical services and training at the in San Francisco and Oakland. “We need to hang with people while they’re struggling. It might take awhile.”

That’s why Denning and others suggest you start with having naloxone on hand, which can help you stay alive through the process.

Last year in San Francisco, about 1,200 potentially fatal overdoses were reversed by regular folks administering naloxone, not doctors, police or paramedics, Kan says.

Naloxone, which can be administered as a nasal spray or injection, is available without a prescription in , including California. Ask your pharmacy if it stocks the drug. Needle exchange programs also offer the medication at no charge, Denning says, as do some public health clinics.

Rehab Alone Doesn’t Work

People addicted to opioids face staggering relapse rates of 80 to 90 percent within 90 days if they try short-term rehab or detox programs that wean them off the drugs without assistance from medications, says Richard Rawson, a UCLA psychiatry professor emeritus.

Rawson warns that rehab can also increase the risk of an overdose, because your body’s tolerance to opioids is lower after you withdraw from them.

“If you leave rehab and take the same dose you used to take, you’re not just going to get high, you’re going to be dead,” he says.

Instead of treating opioid addiction like a curable illness, he and other experts liken it to lifelong, chronic conditions such as diabetes that require ongoing management.

“This isn’t going to be one visit. If you have an addictive disorder, this is going to be the rest of your life,” says Dr. Stuart Gitlow, an addiction specialist in New York City who is past president of the .

Chronic illnesses often require medication. Rawson and others point to two drugs in particular that may help break your addiction: and .

There is some unwarranted stigma attached to these drugs, along with a belief that “you’re just exchanging one addiction for another,” Kan says.

While these medications are actually opioids themselves, they control craving and withdrawal — and help prevent the compulsive and dangerous behavior often associated with addiction.

They also reduce your chances of an overdose, Rawson says. And they protect you from other risks that come with opioid addiction, such as exposure to blood-borne infections from sharing needles, including HIV and hepatitis C.

Essentially, the medications make you “comfortable enough physically” to confront the issues behind your addiction, from anxiety and depression to post-traumatic stress disorder, Denning says.

The federal government agrees.

“Abundant scientific data show that long-term use of maintenance medications successfully reduces substance use, risk of relapse and overdose, associated criminal behavior, and transmission of infectious disease, as well as helps patients return to a healthy, functional life,” according to the Surgeon General’s 2016 .

To obtain methadone, you must visit a clinic governed by state and federal rules.

“These clinics are not particularly patient-friendly. You have to go every day. You can’t travel,” Denning says. “It takes over your life.”

Buprenorphine, on the other hand, can be obtained from doctors, including primary care physicians, who have undergone training and received federal approval.

“The beauty of buprenorphine is it can be prescribed like any medication out of a doctor’s office,” Denning says.

To , go to the Substance Abuse and Mental Health Services Administration website at and click on the “Find Help & Treatment” link from the home page. You can search by state and ZIP code.

Though you can receive care from your primary care physician, Gitlow recommends that you also consult with an addiction specialist.

In California, the California Society of Addiction Medicine’s website at and clicking on the “Physician Locator” tab.

If you do not live in California, check the American Academy of Addiction Psychiatry’s website at and click on the “” tab on the home page.

After You Start The Medication …

Once patients start one of the medications, it’s not clear how long they should stay on — a question that deserves further research, Rawson says.

“The longer people stay on treatment, the lower the death rate is and the more they’re able to function,” he says.

Often patients face pressure from family members, who badger them to get off the medications even though it would be better for them to stay on them, Kan says.

“We don’t say to patients who suffer from diabetes … ‘Have you changed your diet enough so you can get off insulin?’” he says.

Kan and other addiction specialists generally don’t encourage medication treatment alone, no matter how long you stay on it. Pairing the medication with therapy or other support, including 12-step programs such as , can reduce relapse rates further, they say.

and groups also can be helpful resources for families, Kan adds.

“12-step is something I encourage for everybody. I don’t consider it a treatment, per se. It’s like mutual support,” he says.

Questions for Emily: AskEmily@kff.org

�� to read previous Ask Emily columns.

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Ding Dong! The Obamacare Tax Penalty Is(n’t) Dead

Emily Bazar — Wed, 28 Feb 2018 10:00:47 +0000

Rick, Patrick and Michael recently commented on Covered California’s , urging others to ditch health insurance because:

“No more fines or penalties!!! Trump took care of that!! Saved me 700 bucks this year!!!”

“Trump removed the penalty for not having insurance.”

“I’m pretty sure Trump abolished the illegal penalty.”

They’re right — and wrong.

On Dec. 22, President Donald Trump did indeed sign that repeals the Affordable Care Act’s tax penalty by zeroing out the fines.

Opponents of the tax penalty rejoiced, and many, like Rick, Patrick and Michael, assumed it took effect immediately.

Not so. The penalty won’t go away until 2019, and that means you still will owe Uncle Sam if you didn’t have health insurance — or from the mandate — in 2017. The same holds true for this year.

“There’s just mass confusion out there,” reports Steven Stasoiski, a tax accountant and insurance agent in Seal Beach, Calif.

Some of his clients decided to drop their health insurance this year without consulting him first, thinking they wouldn’t have to pay a penalty next year. “When they file next season … they’re going to be surprised,” he says.

One client, a family of four in Orange County, Calif., decided to go without insurance this year, and will owe about $15,200 next year because of it — roughly the same cost as a bronze-level health insurance plan that would protect them from catastrophic health insurance bills, Stasoiski says.

Under Obamacare, most people must have health insurance or pay a tax penalty. , the penalty is $695 per adult (up to a family maximum of $2,085), or 2.5 percent of household income, whichever is greater. The penalty for children is half the adult rate ($347.50).

You can avoid the penalty if you qualify for one of the health law’s several . For instance, you may be exempt if you were uninsured for less than three consecutive months of the previous year, if your income is low enough that you’re not required to file a federal tax return or if you belong to a .

But if you don’t fit into one of the exemption categories and you were uninsured in 2017, or will be in 2018, you’re probably out of luck, says Alison Flores, a principal tax research analyst at the , the research wing of H&R Block, based in Kansas City, Mo.

“If you have a penalty and you’re due a refund, that penalty reduces your refund,” she says. If you owe a penalty but aren’t owed a refund, and then you decide not to pay the penalty, the Internal Revenue Service may take it out of a future refund, she says.

The IRS that this year, for the first time, it will reject electronically filed tax returns that don’t address Obamacare tax penalty questions. If you file a paper return and don’t address those questions, your return could be held up and a refund delayed, adds Michael Eisenberg, a certified public accountant with Squar Milner in Encino, Calif.

“They are saying, ‘This is the law, and you have to comply with the law while it’s the law,’” he says. “They are going to enforce the penalties.”

A quick note on the Obamacare-related tax forms, which will help you prove to the IRS that you had health insurance last year.

Some of you who got insurance last year from employers, on the open market or through government programs such as Medicare or Medi-Cal, may still be waiting for your 1095-B and 1095-C forms. The IRS to March 2 for those forms to be delivered to taxpayers.

But you don’t need them in hand to complete your taxes, which are due on this year. “You should have other substantiation that you had health insurance,” such as W-2 forms, Medicare cards or explanations of benefits from your insurance company, Flores says.

On the other hand, you must have a correct 1095-A to complete your taxes. If you’re a Covered California enrollee — or buy your insurance through any state or federally run health insurance exchange — you should have received your by Jan. 31.

If you’re still waiting for yours and you’re a resident of the Golden State, log on to your Covered California account and check your inbox. You should find a copy of your 1095-A there, says agency spokesman James Scullary.

If that still doesn’t help, or if your 1095-A form is incorrect, fill out a , which you can find under the “Members” tab of the Covered California website at .

As always, my most important piece of advice when it comes to Obamacare and taxes is to seek the aid of a tax professional.

If you can’t afford it, multiple programs offer free tax help, including the (VITA) program, run by the IRS () and the program ().

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Family Crisis Or New Joy? Get Paid Time Off For It

Emily Bazar — Mon, 29 Jan 2018 10:00:26 +0000

Last May, I wrote that offered tips for caregivers — without knowing that I would soon become one myself.

A few months later, my dad was rushed to the hospital for emergency surgery. Then came the cancer diagnosis. Now he’s enduring endless appointments, scans and blood draws, not to mention chemotherapy every two weeks, for three days at a time, administered at home through a portable pump.

Life changed overnight for him, for my mom, who became his full-time caregiver, and for me. I fly to Southern California every two weeks to help.

Armed with my laptop, I can usually work when I am down there. But sometimes I need to take a day — or just several hours — off. When I do, I get part of my salary reimbursed through California’s .

Many of you may not realize that you can take up to six weeks of paid leave in a 12-month period to bond with a new child or care for a sick loved one. Not all of it must be taken at once. You can break it into two or three chunks, or even single days — or hours — as I do.

Even many Californians who know about the program do not use it because of the onerous paperwork or the loss of their full salaries, experts say.

“As much as paid family leave is great, there are still some big lumps in the system for making it easily usable,” says Leah Eskenazi, director of operations for the , a national group based in San Francisco.

Starting this month, the program addresses some of the obstacles: Now you can receive up to 70 percent of your pay, depending on your income, up from 55 percent. And the previously required seven-day waiting period is going away, which means your benefits can kick in on the first day you need them.

California’s Paid Family Leave program, the first in the country, took effect in 2004. It is funded by employees through payroll deductions — look for “CASDI” on your pay stubs.

You for the program if you work for an employer of any size, in the public or private sector, or even for yourself, so long as you have recently contributed to the program.

Since it began, some 2.65 million Californians have made about 2.8 million paid-leave claims. Nearly 90 percent of the claims were filed by mothers and fathers using the benefit to bond with new biological, adopted or foster children, according to the state’s Employment Development Department (EDD), which administers the program.

Fewer than one-eighth of the claims have been to care for seriously ill children, parents, parents-in-law, grandparents, grandchildren, spouses or registered domestic partners.

The new rules, which apply to claims effective on or after Jan. 1, increase the wage replacement to about 60 to 70 percent of your income, with low-income employees qualifying for the higher rate. You can plug your salary into the department’s at edd.ca.gov to see how much you would get.

Benefits max out at $1,216 a week.

As negotiations over raising the nation’s debt ceiling continue, two senators advanced a proposal to squeeze savings from Medicare. It includes raising the eligibility age to 67.

Danny Contreras, 36, first heard about paid family leave when his oldest son, Joseph, affectionately known as “Jojo,” was born in 2013. Contreras took six weeks, split into two periods, to bond with his new baby.

When his second son, Danny Jr., was born in 2016, he took three weeks.

Contreras thinks many dads don’t take paid leave because they don’t know about it, or because pride compels them to keep working.

“I tell everybody, especially fathers, ‘Take advantage of it. Be there for your kids. Be there for your wife,’” the Watsonville resident says. “That’s sacred time.”

Most paid-leave claims are for bonding with a child because that’s an event you can typically plan for, says Donna Benton, director of the . Caregiving for an illness, on the other hand, may be less predictable, she says, and it may not be clear how long that role might last.

In 2015, the Family Caregiver Alliance asked 141 people who care for sick relatives about California’s paid-leave program. Only about 12 percent of those who were eligible used it, Eskenazi says.

Many didn’t even know the program existed, or that they didn’t have to take all six weeks off at once, she says.

Those who knew about it reported two major obstacles: insufficient wage replacement and a burdensome application.

“Some ended up … not even using paid family leave because it was too confusing,” Eskenazi says.

I can attest that the paperwork is difficult and help hard to get. It is also frustrating to rely on — and wait for — doctors who must submit paperwork on your behalf.

The Employment Development Department is working to simplify the online application system, available at , says Loree Levy, a department spokeswoman.

It is also engaged in an outreach campaign to spread the word about the program, not only among employees, but also doctors, foster care agencies and others, she adds.

“We’re trying to make sure they have the information they need to help consumers,” Levy says.

Awareness of the program is particularly low among low-income and immigrant families, says Jenya Cassidy, director of the , which advocates for programs that support working families.

If you need help with your application or benefits, you can try the program’s general phone number (877-238-4373). But I’m not a fan of the endless, automated phone tree that often leaves you stranded with a recording rather than a real person. You may have more luck with the department’s online troubleshooting form: .

In addition, , a national organization based in San Francisco, runs a (800-880-8047) that fields about 1,500 calls a year from workers seeking help with Paid Family Leave and other programs.

You can also find an , fact sheets and videos about paid leave at . Click on the “working families” box on the home page to get there.

If you’re still stuck, try the California Work & Family Coalition at 510-473-2216.

And don’t forget, your human resources department at work should be a source of information and support, though I know that’s not the case for everyone.

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Giving Medicaid Enrollees Something To Smile About

Emily Bazar — Wed, 10 Jan 2018 10:00:03 +0000

Susan Inglett’s dental coverage changed just after she got a root canal on one of her top teeth.

It was 2009, and California was in the midst of a budget crisis. To cut costs, Medi-Cal, the state’s health insurance program for low-income residents, eliminated non-emergency dental benefits for adults.

Inglett, 63, of San Diego, needed a crown for that vulnerable tooth, but the state no longer paid for them.

She couldn’t afford one on her own, so she went without it. After that, she had three other teeth pulled because the dental services that would have saved them were no longer covered.

“You end up making choices about what you can and cannot afford,” Inglett says. “If a procedure comes up and you simply can’t afford it, and it’s cheaper to yank the tooth, then you take out the tooth.”

Now, Inglett won’t have to choose between fixing her teeth and getting them pulled.

Many of the dental services cut nine years ago were restored on Jan. 1 for her and about 7.5 million adults on Medi-Cal, many of whom had to get their teeth pulled rather than repaired.

Some benefits had been partially restored in 2014, such as fillings and X-rays, but critical treatments remained uncovered, including lab-processed crowns, root canals on back teeth, treatments for gum disease and partial dentures.

Those procedures are now covered.

Medi-Cal is California’s version of the state-federal Medicaid program. All state Medicaid programs must provide comprehensive dental coverage for children, but dental services are optional for adults.

Almost all states do provide some adult dental benefits, though the scope varies. , 16 states plus the District of Columbia provided extensive adult dental benefits, 17 offered limited dental benefits and the remaining 13 that covered adults did so only for emergency dental care, according to the Center for Health Care Strategies.

Four states provided no adult dental benefits at all.

During budget crises, optional adult dental benefits are among the first to be chopped, says Robin Rudowitz, associate director of the Kaiser Family Foundation’s Program on Medicaid and the Uninsured. (Kaiser Health News is an editorially independent program of the foundation.)

As economies improve, states often move to restore them, Rudowitz says. , including California, Arizona and Oregon, expanded their dental coverage in fiscal years 2017 and 2018.

But access to actual dental care is a problem for Medicaid enrollees, and a critical question looms in California now that adult dental benefits have been restored: Will there be enough dentists willing to accept the rates that Denti-Cal — Medi-Cal’s dental program — pays for them?

“The vast majority of dentists don’t accept Denti-Cal patients because they can’t afford it,” says Sigmund Abelson, associate dean for clinical affairs at University of the Pacific’s .

The school operates clinics in San Francisco and Union City that treat about 2,500 Denti-Cal patients a year, he says. Services are provided by students under the supervision of faculty.

Abelson says he believes the overall health of Medi-Cal enrollees will improve now that full dental benefits have been restored, assuming they can find participating dentists.

Oral and physical health are directly linked, and many Denti-Cal recipients suffered from preventable illnesses because they couldn’t get appropriate dental care, Abelson says.

Some ended up in emergency rooms, “many times with acute infections that could have been treated by dentists,” he says.

Patients like Inglett who are missing teeth tended to start eating more processed foods and soft foods, says her dentist, , who practices in National City, just south of San Diego.

“That in itself creates a lot of other problems,” such as diabetes, obesity and high blood pressure, she says. “It’s all a vicious cycle.”

Among the treatments that were restored this month, Abelson ranks root canals and special cleanings for people with gum disease as two of the most important.

Under the previous rules, root canals on back teeth were not covered. Extractions, on the other hand, were.

Now, all teeth are eligible for root canal coverage, Abelson says.

For patients with gum disease, Denti-Cal also started covering “,” which is a deep cleaning below the gum line that can help reduce infections in the mouth, Abelson says.

“Remember, your gums are holding in your teeth,” he says. “There’s no point in fixing a tooth if you have bad gums. You may ultimately lose the tooth.”

Hirota is thrilled that her patients are now eligible for partial dentures. After benefits were partly restored in 2014, enrollees could get only full dentures. That meant any remaining teeth had to be pulled before patients could qualify, Hirota says.

Having dentures “makes all the difference in the world for your confidence, and for your ability to get a job and present yourself in public,” she says.

Inglett is grateful for the changes. If the benefits had not been restored, she would have had to get more teeth pulled. “I am at the point where I would have to keep sacrificing my teeth,” she says.

Inglett already has a dentist who accepts Medi-Cal. Enrollees who don’t might have difficulty finding one.

A on Denti-Cal in 2016 by the Little Hoover Commission, an independent state oversight agency, noted that just a quarter of California dentists participate “due to its low reimbursement rates and administrative obstructions.” Finding a Denti-Cal dentist in rural counties can be next to impossible.

But state officials say they are engaged in a statewide outreach effort to recruit more dentists and have simplified the enrollment paperwork for providers.

And last year, Denti-Cal increased the rates it pays dentists for hundreds of procedures by 40 percent, a boost that was funded by the tobacco tax, , which voters approved in November 2016.

Hirota’s regular charge for a filling that repairs damage on two surfaces of a tooth is $130. Before the rate hike, Denti-Cal paid her $48, but that grew last year to $67.20, she says.

Hirota believes more dentists may start to accept Denti-Cal patients now, but Abelson is skeptical that the rate hikes will be enough to entice an adequate number of dentists.

To search for dentists who accept fee-for-service Denti-Cal, which is the primary service model for most of the state, visit the Denti-Cal website at or call 800-322-6384. If you live in Sacramento or Los Angeles County and have managed-care Denti-Cal, email dentalmanagedcare@dhcs.ca.gov or call 916-464-3888.

You can also call your , which likely maintains a list of dentists in the area who accept Denti-Cal. You can find your branch by visiting the California Dental Association website () and clicking on the “About CDA” tab.

Like University of the Pacific, many dental schools accept Denti-Cal patients, Abelson says. However, in the Bay Area and Southern California, so they won’t be accessible to all Californians.

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Problems With Your Hospital Care? Speak Up!

Emily Bazar — Wed, 22 Nov 2017 10:05:34 +0000

My dad was in excruciating pain over Labor Day weekend, so my mom rushed him to the emergency room of a renowned university hospital.

Doctors determined that he needed surgery that night, and luckily I was able to fly in and see him before he was wheeled away. “Take care of your mom if anything happens to me,” he said as my mom and I wept.

Thankfully, my dad made it through. But he had to spend 11 days recovering in the hospital, a place he now equates with prison.

One night, he suffered for five hours, desperately calling for help after his pain meds had run out. A nurse’s aide stationed in his room had fallen asleep.

“I called on the intercom so many times, and nobody showed up,” he recounts.

That was just one of the many failures in care that we encountered during my dad’s stay. Others included inconsistent nursing quality, waiting all day for doctors to respond to pages, insensitive communication of bad news, trying in vain to reduce noise levels so my dad could sleep, and so much more.

My job is to give you advice on health care and insurance issues. My mom is a registered nurse. Yet we both felt frustrated that we couldn’t make things better for my dad.

Unfortunately, this happens to a lot of people. “Everything you hear these days is about patient-centered care, this and that,” says Terry Bay, who owns a Casper, Wyo.-based that provides advocacy services to older patients. But “we don’t live in a patient-centered health care environment.”

Today I’m going to offer advice for you in case you or a loved one lands in a hospital.

There are state and federal laws that cover, among other things, your rights to privacy, nondiscrimination, language interpretation and visitation, says Lois Richardson, vice president and legal counsel of the .

But beyond legal protections, there are people you can talk to and steps you can take to improve your situation if you feel you’re not getting the care you deserve. And patients’ opinions do count.

“All hospitals increasingly are being scored and paid based on patient and family satisfaction scores,” says Rebecca Kirch, an executive vice president with the . “There is power in the people.”

That power starts with a few simple things.

First, make sure a spouse, child, family member or friend — anyone concerned for your well-being — can spend time with you in the hospital and be your advocate. You cannot do it by yourself while you’re in pain, medicated and not thinking clearly.

“It’s having someone else in your court, someone who can check in and make sure your questions are being answered,” says , a geriatrician and palliative care physician at the University of California-San Francisco.

Before you or your advocate speaks to your nurse or doctor, write down your questions. Keep track of your glasses, hearing aids and dentures — the personal belongings that most often go missing in hospitals, Sudore says.

“How can someone speak up for themselves if they can’t see someone? Or can’t hear?” she asks.

When the time comes to ask questions — or express frustration — don’t be afraid to speak up. You have every right, even though it can feel intimidating to question your doctors or complain about your nurses.

“You can say, ‘No, I don’t want to go for that test. I want to speak to my daughter first,’” Bay says.

If you’re getting jostled out of sleep for a blood draw or blood pressure check in the middle of the night, ask your doctor the next day if it’s really necessary. Often, it can wait till early morning, says Julianne Morath, president and CEO of the .

“It’s up to us to put our own humanity back into decisions,” Sudore says.

But here’s where speaking up can get thorny.

Let’s say you don’t feel you’re getting adequate care or you’re unhappy with how you’re being treated. You can start with your nurse, but if that’s uncomfortable — perhaps because that nurse is the source of the problem — approach the charge nurse, who manages the staff in your unit.

You can also ask to talk to a hospital-based social worker, who can intercede or help you figure out who to talk to, Kirch says.

If that doesn’t help, take your complaints to the next level.

Every hospital that participates in the Medicare program — which is most — must have an ombudsman or patient rights advocate, Richardson says. My mom and I eventually complained to the patient rights advocate. It helped, and we wish we had done it sooner.

If you can’t go to the patient rights advocate yourself, “you can call them or ask your nurse to call them and have them come up to your room,” Richardson says. Hospitals must acknowledge patient complaints immediately, she says, and must respond in writing once they are resolved.

As part of this process, no matter whom you talk to, there are some phrases that can spur quick action, Kirch explains. One is “This doesn’t feel like quality care to me.” Another is “I see my loved one suffering.”

If you have a serious illness and you’re suffering from symptoms that aren’t being managed correctly, you can also request a consultation with a palliative care team. isn’t only about end-of-life issues, it’s about quality of life, Kirch says.

Most large hospitals have a multidisciplinary team of doctors, nurses, social workers, chaplains and others who can provide added support on top of the medical treatment you’re receiving, especially if you’re getting shuffled among medical specialties.

“They can help tremendously to fill in the blanks. … It can be pain management. It can be spiritual or psychological distress,” Kirch says. “The palliative care team treats the person beyond the disease.”

If you have done all that and still have concerns, Kirch’s organization has case managers who provide free, one-on-one support for patients. Call 800-532-5274 for more information or visit .

To be clear, I’m not suggesting you complain about every little thing. Be realistic. For instance, a hospital doctor may see up to 30 patients a day. So you might have to wait for your page to be answered unless you have a serious, potentially life-threatening problem, Sudore says.

“It may not be that you’re being ignored. It might be that someone has to figure out the competing priorities,” she says.

And don’t forget that your caregivers are human too, Morath advises. “They get tired, they get stressed,” she says. “Very often, just letting them know you’re not getting what you need and asking for their help … is a very powerful act.”

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