Robust research shows that doctors are notoriously bad at delivering life-altering news.

This article was first published on Wednesday, June 12, 2019 in Kaiser Health News.

By JoNel Aleccia

PORTLAND, Ore. — After nearly 40 years as an internist, Dr. Ron Naito knew what the sky-high results of his blood test meant. And it wasn't good.

But when he turned to his doctors last summer to confirm the dire diagnosis — stage 4 pancreatic cancer — he learned the news in a way no patient should.

The first physician, a specialist Naito had known for 10 years, refused to acknowledge the results of the "off-the-scale" blood test that showed unmistakable signs of advanced cancer. "He simply didn't want to tell me," Naito said.

A second specialist performed a tumor biopsy, and then discussed the results with a medical student outside the open door of the exam room where Naito waited.

"They walk by one time and I can hear [the doctor] say '5 centimeters,'" said Naito. "Then they walk the other way and I can hear him say, 'Very bad.'"

Months later, the shock remained fresh.

"I knew what it was," Naito said last month, his voice thick with emotion. "Once [tumors grow] beyond 3 centimeters, they're big. It's a negative sign."

The botched delivery of his grim diagnosis left Naito determined to share one final lesson with future physicians: Be careful how you tell patients they're dying.

Since August, when he calculated he had six months to live, Naito has mentored medical students at Oregon Health & Science University and spoken publicly about the need for doctors to improve the way they break bad news.

"Historically, it's something we've never been taught," said Naito, thin and bald from the effects of repeated rounds of chemotherapy. "Everyone feels uncomfortable doing it. It's a very difficult thing."

Robust research shows that doctors are notoriously bad at delivering life-altering news, said Dr. Anthony Back, an oncologist and palliative care expert at the University of Washington in Seattle, who wasn't surprised that Naito's diagnosis was poorly handled.

"Dr. Naito was given the news in the way that many people receive it," said Back, who is a co-founder of VitalTalk, one of several organizations that teach doctors to improve their communication skills. "If the system doesn't work for him, who's it going to work for?"

Up to three-quarters of all patients with serious illness receive news in what researchers call a "suboptimal way," Back estimated.

"'Suboptimal' is the term that is least offensive to practicing doctors," he added.

The poor delivery of Naito's diagnosis reflects common practice in a country where Back estimates that more than 200,000 doctors and other providers could benefit from communication training.

Too often, doctors avoid such conversations entirely, or they speak to patients using medical jargon. They frequently fail to notice that patients aren't following the conversation or that they're too overwhelmed with emotion to absorb the information, Back noted in a recent article.

"[Doctors] come in and say, 'It's cancer,' they don't sit down, they tell you from the doorway, and then they turn around and leave," he said.

That's because for many doctors, especially those who treat cancer and other challenging diseases, "death is viewed as a failure," said Dr. Brad Stuart, a palliative care expert and chief medical officer for the Coalition to Transform Advanced Care, or C-TAC. They'll often continue to prescribe treatment, even if it's futile, Stuart said. It's the difference between curing a disease and healing a person physically, emotionally and spiritually, he added.

"Curing is what it's all about and healing has been forgotten," Stuart said.

The result is that dying patients are often ill-informed. A 2016 study found that just 5% of cancer patients accurately understood their prognoses well enough to make informed decisions about their care. Another study found that 80% of patients with metastatic colon cancer thought they could be cured. In reality, chemotherapy can prolong life by weeks or months, and help ease symptoms, but it will not stop the disease.

Without a clear understanding of the disease, a person can't plan for death, Naito said.

"You can't go through your spiritual life, you can't prepare to die," Naito said. "Sure, you have your [legal] will, but there's much more to it than that."

The doctors who treated him had the best intentions, said Naito, who declined to publicly identify them or the clinic where they worked. Reached for verification, clinic officials refused to comment, citing privacy rules.

Indeed, most doctors consider open communication about death vital, research shows. A 2018 telephone survey of physicians found that nearly all thought end-of-life discussions were important — but fewer than a third said they had been trained to have them.

Back, who has been urging better medical communication for two decades, said there's evidence that skills can be taught — and that doctors can improve. Many doctors bridle at any criticism of their bedside manner, viewing it as something akin to "character assassination," Back said.

"But these are skills, doctors can acquire them, you can measure what they acquire," he said.

It's a little like learning to play basketball, he added. You do layups, you go to practice, you play in games and get feedback — and you get better.

For instance, doctors can learn — and practice — a simple communication model dubbed "Ask-Tell-Ask." They ask the patient about their understanding of their disease or condition; tell him or her in straightforward, simple language about the bad news or treatment options; then ask if the patient understood what was just said.

Naito shared his experience with medical students in an OHSU course called "Living With Life-Threatening Illness," which pairs students with ill and dying patients.

"He was able to talk very openly and quite calmly about his own experience," said Amanda Ashley, associate director of OHSU's Center for Ethics in Healthcare. "He was able to do a lot of teaching about how it might have been different."

Alyssa Hjelvik, 28, a first-year medical student, wound up spending hours more than required with Naito, learning about what it means to be a doctor — and what it means to die. The experience, she said, was "quite profound."

"He impressed upon me that it's so critical to be fully present and genuine," said Hjelvik, who is considering a career as a cancer specialist. "It's something he cultivated over several years in practice."

Naito, who has endured 10 rounds of chemotherapy, recently granted the center $1 million from the foundation formed in his name. He said he hopes that future doctors like Hjelvik — and current colleagues — will use his experience to shape the way they deliver bad news.

"The more people know this, it doesn't have to be something you dread," he said. "I think we should remove that from medicine. It can be a really heartfelt, deep experience to tell someone this, to tell another human being."

JoNel Aleccia: jaleccia@kff.org, @JoNel_Aleccia

Public health departments are redirecting scarce resources to try to control the spread of measles. Their success relies on shoe-leather detective work.

This article was first published on Monday, June 10, 2019 in Kaiser Health News.

By Jenny Gold

On any given day, more than 4,000 people pass through the library at California State University-Los Angeles.

On April 11, one of them had measles. The building has only one entrance, which means that anyone who entered or exited the library within two hours of that person's visit potentially was exposed to one of the most contagious diseases on Earth.

It's the stuff of public health nightmares: Everyone at the library between 11 a.m. and 3 p.m. that day had to be identified, warned and possibly quarantined. Measles is so contagious that up to 90% of people close to an infected person who are not protected by a vaccine or previous case of the disease will become infected. But how could the university figure out who had been in the library during that time frame? And which of those people were vulnerable to infection?

Rooting out answers to such questions is the job of the public health detectives who work at health departments across the country.

In 2000, the United States declared the measles eradicated, thanks to widespread use of vaccines. But the virulent disease is back, with more than 1,000 cases confirmed nationwide this year through June 3 — the greatest number since 1992. For every thousand cases, 1 to 3 people with measles will die, even with the best of care, according to the Centers for Disease Control and Prevention. So public health departments are redirecting scarce resources to try to control the spread.

Using basic techniques in place for over 100 years, public health investigators work to control an outbreak before it balloons. Such investigations have evolved with new technologies but remain among the best defenses against infectious disease outbreaks — and among the great untold costs of an epidemic.

The New York City Department of Health and Mental Hygiene, which has confirmed 566 measles cases since September, has spent more than $2.3 million on related investigations. The Los Angeles County Department of Public Health estimates spending as much as $2,000 to track down each contact of a confirmed patient — and it has made hundreds of such efforts in recent months.

"Public health departments across the country have had their budgets tightened in a sustained fashion over the past 15 years," said Dr. William Schaffner, an infectious-disease specialist at Vanderbilt University. "There are no public health departments that are like firemen playing pinochle and waiting for an outbreak. They have other things to do, and they have to put aside those tasks to deal with an outbreak."

At Cal State LA, public health officials visited the library and tried to figure out exactly where the infected student had gone — the photocopy area, for example — to determine who might have been exposed. They worked with the school to identify which library employees were present. They scoured library records to find anyone who had checked out books or logged onto a library computer during the specified time period.

But they realized they were missing others who may have come in to browse, work or eat at a library cafe. So, school officials sent out emails and posted on Facebook, Twitter and Instagram to ask anyone who may have been at the library to come forward.

Working together, Cal State and county health officials came up with a list of 1,094 people who were exposed; all were required to present proof they had been vaccinated or had immunity.

At one point during the investigation, 887 people were under a blanket quarantine order from the Los Angeles County Department of Public Health until they could establish their immunity status.

Public health departments regularly employ this sort of shoe-leather detective work to track and control outbreaks of sexually transmitted diseases and foodborne illnesses like salmonella. But there is a palpable sense of frustration that sets the measles apart: It is easily preventable.

"We shouldn't have to be using these ancient techniques. We should have everybody immunized," said Dr. Alan Melnick, director of public health in Clark County, Wash., which logged 71 measles cases during a two-month outbreak that ended in February. "That's what keeps me up at night. If we stop vaccinating, we can turn the clock back to the Middle Ages."

In the course of Clark County's outbreak, 237 people spent 19,071 hours doing outreach, investigation and monitoring the health of people exposed, at a cost of more than $864,000. They investigated 53 exposure sites, including 15 schools and the arena where the Portland Trail Blazers play just across the state line in Oregon.

All this work meant delays in other programs, including restaurant health inspections and a home-visit program for high-risk pregnant women and infants.

"Just because the measles outbreak is going on, it doesn't mean other communicable diseases are taking a holiday," Melnick said.

There was a time public health officials wouldn't have bothered. Before the late 19th century, officials "were busy trying to control diseases like typhoid, cholera and smallpox," which had much higher death rates than measles, said Graham Mooney, an associate professor at Johns Hopkins University who studies the history of medicine. But as other infectious diseases declined, officials focused more intently on measles.

By the early 20th century, schools began noting which students had already had the measles, and who might be vulnerable. When a child fell ill, he might be sent home with a card to be signed by a physician before he could return. A school medical inspector often would visit the home to make sure the child remained isolated.

During an epidemic involving thousands of cases, officials placed warnings in newspapers and later on the radio, describing likely symptoms and asking parents to keep sick children at home. "Now it's Twitter; before, it would have been The Baltimore Sun or the Chicago Tribune or the L.A. Times. But the actual information may not have changed," said Mooney.

Today, public health departments almost invariably learn of a measles case through a healthcare provider. Measles is a reportable disease, which means that any provider who suspects a case has to warn local health officials. Someone from the department visits the patient to conduct an interview and determine precisely where they might have gone while contagious. For the measles, that's four days before the rash appears, and four days after, for a total of nine days.

The interviews are rigorous. "We have to assess their hangouts, their friends, their hobbies, which grocery store do they go to, do they take Lyft or Uber?" explained L.A. County public health nurse Adarsh Almalvez.

For most people, it's hard to remember everywhere they went days earlier. Some patients are reluctant to share details. Almalvez said she starts by building a rapport, asking them about their favorite foods and where they get their hair cut. She said it's crucial to get the patient's cooperation.

She looks for clues around the house that could tell her who else might be living there. Extra pairs of shoes in the hallway, for example, might indicate other residents. If she's interviewing a woman and finds the toilet seat up, she knows a man likely has been there as well.

The goal is to come away with a list of all possible contacts and locations the patient visited while contagious. The results can read like a bizarrely intimate window into one person's day. L.A. County recently published a patient's itinerary in April; in one enviable day, that patient visited Peet's Coffee, Fratelli Café, TART restaurant, The Grove, the Los Angeles Farmers Market, Whole Foods and the La Brea Tar Pits.

Public health officials visit each site to gather more information. They reach out to ride-sharing services to locate drivers and other passengers who might have been in the same car during the infectious period. At restaurants, employees are easily identified, but customers can be hard to find. Officials don't routinely look at surveillance video or track down people through credit card receipts. Instead, they mainly rely on news releases and social media to spread the word. They also look to schools and businesses to do outreach.

This can be a lot of work, especially for medical clinics where a measles patient initially sought care. During a 2017 outbreak, Children's Minnesota, a hospital system in the Twin Cities, spent $300,000 on their emergency response. Part of that was tracking down everyone in the waiting room within two hours of a measles patient.

Patsy Stinchfield, who directs the Children's Minnesota's infection prevention and control program, has worked on three measles outbreaks, in 1989, 2011 and 2017. She said the work has gotten more efficient because of electronic health records and the state's electronic vaccination registry. With the click of a few buttons, investigators can determine who was in the waiting room with a measles patient, and which people were unvaccinated.

Still, Stinchfield said, measles outbreaks remain a source of great frustration. "If we can get people to use the [measles] vaccine, we won't have to spend all these healthcare dollars, all of this time and energy on follow-up," she said. "And we won't have to have all these miserable, sick children."

Jenny Gold: jgold@kff.org, @JennyAGold

Laws requiring large group health plans to put mental health benefits on an equal footing with physical health have been partially successful, but more work needs to be done.

This article was first published on Friday, June 7, 2019 in Kaiser Health News.

By Graison Dangor

Amanda Bacon's eating disorder was growing worse. She had lost 60% of her body weight and was consuming about 100 calories a day.

But that wasn't sick enough for her Medicaid managed-care company to cover an inpatient treatment program. She was told in 2017 that she would have to weigh 10 pounds less — putting her at 5-foot-7 and 90 pounds — or be admitted to a psychiatric unit.

"I remember thinking, 'I'm going to die,'" the Las Cruces, N.M., resident recalled recently.

Eventually, Bacon, now 35, switched to a plan that paid for treatment, although she said it was still tedious to get services approved.

Many patients like Bacon struggle to get insurance coverage for their mental health treatment, even though two federal laws were designed to bring parity between mental and physical healthcare coverage. Recent studies and a legal case suggest serious disparities remain.

The 2008 Mental Health Parity and Addiction Equity Act required large group health plans that provide benefits for mental health to put that coverage on an equal footing with physical health. Two years later, the Affordable Care Act required small-group and individual health plans sold on the insurance marketplaces to cover mental health services and do that at levels comparable with medical services. (In 2016, parity rules were applied to Medicaid managed-care plans, which cover the majority of people in that federal-state health program for low-income residents.)

The laws have been partially successful. Insurers can no longer write policies that charge higher copays and deductibles for mental healthcare, nor can they set annual or lifetime limits on how much they will pay for it. But patient advocates say insurance companies still interpret mental health claims more stringently.

"Insurance companies can easily circumvent mental health parity mandates by imposing restrictive standards of medical necessity," said Meiram Bendat, a lawyer leading a class-action lawsuit against a mental health subsidiary of UnitedHealthcare.

In a closely watched ruling, a federal court in March sided with Bendat and patients alleging the insurer was deliberately shortchanging mental health claims. Chief Magistrate Judge Joseph Spero of the U.S. District Court for the Northern District of California ruled that United Behavioral Health wrote its guidelines for treatment much more narrowly than common medical standards, covering only enough to stabilize patients "while ignoring the effective treatment of members' underlying conditions."

UnitedHealthcare works to "ensure our products meet the needs of our members and comply with state and federal law," said spokeswoman Tracey Lempner.

Several studies, though, have found evidence of disparities in insurers' decisions.

In February, researchers at the Congressional Budget Office reported that private insurance companies are paying 13% to 14% less for mental healthcare than Medicare does.

The insurance industry's own data shows a growing gap between coverage of mental and physical care in hospitals and skilled nursing facilities. For the five years ending in 2017, out-of-pocket spending on inpatient mental healthcare grew nearly 13 times faster than all inpatient care, according to inpatient data reported in February by the Healthcare Cost Institute, a research group funded by the insurance companies Aetna, Humana, UnitedHealthcare and Kaiser Permanente. (Kaiser Health News is not affiliated with Kaiser Permanente.)

And a 2017 report by the actuarial firm Milliman found that an office visit with a therapist is five times as likely to be out-of-network, and thus more expensive, than a primary care appointment.

In this environment, only half of the nearly 8 million children who have been diagnosed with depression, anxiety or attention deficit hyperactivity disorder receive treatment, according to a February research letter in JAMA Pediatrics. Fewer than 1 in 5 people with substance use disorder are treated and, overall, nearly 6 in 10 people with mental illness get no treatment or medication.

Amanda Bacon, who is still receiving care for her eating disorder, remembers fearing that she wouldn't get treatment. She was at one point rushed to an emergency room for care, but after several days she was sent home, no closer to getting well.

Today, because of her disability, Bacon's primary insurance is through Medicare, which has paid for treatment that her earlier Medicaid provider, Molina Healthcare, refused. She has been treated in four inpatient programs in the past two years — twice through Presbyterian Centennial Care, a Medicaid plan she switched to after Molina, and twice though her current Medicare plan. Bacon is also enrolled in a state-run Medicaid plan.

Molina said it could not comment on Bacon's case. "Molina complies with mental health parity laws," said spokeswoman Danielle Smith, and it "applies industry-recognized medical necessity criteria in any medical determinations affecting mental health."

The 'Wrong Criteria'

Dr. Eric Plakun, CEO of the Austen Riggs Center, a psychiatric hospital and residential program in Massachusetts, said that often insurers are "using the wrong criteria" for what makes something medically necessary. They pay enough to stabilize a patient's condition, he said, but not enough to improve their underlying illness. Plakun was one of the experts who testified in the case before Judge Spero in California.

Insurers say they recognize the importance of mental healthcare coverage and that they are complying with the law.

Cathryn Donaldson, a spokeswoman for the trade group America's Health Insurance Plans, said that the industry supports parity but that it is also harder to prove when mental health treatment is needed.

Compared with medical and surgical care, the data and standards to measure mental healthcare "trail far behind." She cited a 2016 study of Minnesota hospitals, where nearly one-fifth of the time patients spent in psychiatric units occurred after they were stabilized and ready to be discharged.

"Just like doctors use scientific evidence to determine the safest, most effective treatments," insurers do the same to cover treatment "consistent with guidelines showing when and where it's effective for patients," Donaldson said.

Health plans commonly apply several controls for mental healthcare. The techniques are legal — unless they are applied more strictly for mental healthcare than medical care.

They often require patients to try cheaper options first, a strategy called "fail first." Patients referred by their doctors to a residential program for opioid addiction, for example, might be denied by their insurers until they try, and fail, to improve at a less expensive part-time program.

Hiring doctors, nurses and pharmacists to review claims is another technique.

Dr. Frederick Villars, who reviews mental health claims for Aetna, remembers arguing with insurers to approve treatment when he was a practicing psychiatrist. His team decides what to cover based on clinical standards, he said, and providers upset about a coverage decision "are well aware of what these guidelines are."

"It's not a pleasant process," he said, "but it's the only tool that exists in this setting to try to keep costs under control."

Tens of thousands of Americans each year are dropped by their insurers over payment issues, sometimes with little or no prior warning from their insurers.

This article was first published on Wednesday, June 5, 2019, in Kaiser Health News.

By Julie Appleby

Caitlin and Corey Gaffer know they made a mistake.

Anyone could have done the same thing, the Minneapolis couple says. Still, they can't believe it cost them their health insurance coverage just as Caitlin was in the middle of pregnancy with their first child.

"I was like 'What?' There's no way that's possible," said Caitlin, 31, of her reaction to the letter she opened in early October telling them the coverage they had for nearly two years had been canceled. It cited nonpayment of their premium as the reason.

Except they had paid the bill, they thought.

The Gaffers' snafu — and their marathon battle to correct the error with insurer HealthPartners — is featured in the podcast "An Arm and a Leg," which launches its second season this week and is co-produced by Kaiser Health News.

Like the Gaffers, tens of thousands of Americans each year — exact counts aren't available — are dropped by their insurers over payment issues, sometimes with little or no prior warning from their insurers.

The question is: Can insurers cancel people with little or no notice? The answer is yes … and no. Like so many issues in American healthcare, it is surprisingly complicated.

This is one problem the Affordable Care Act was designed to fix. Certainly, safeguards were put in place. Insurers can't cancel people when they fall ill, for example. But the protections for being dropped for a missed payment are uneven. Consumers who get an ACA subsidy have more protection than those who don't.

The Gaffers didn't qualify for a subsidy. So they were subject to state law. Minnesota's law requires insurers to provide at least 30 days' notice before canceling, said Scott Smith, spokesman for the state Department of Health, which regulates HMOs. However, an administrative rule seems to undercut that requirement.

The Gaffers didn't get a notice, they say. Their efforts to correct their error were stymied until Dan Weissmann, creator and host of "An Arm and A Leg," started making inquiries about their case.

Misfired Payments

The problem for the Gaffers started in early September. They changed checking accounts and had to set up all new online payments. When they made their monthly $730 health insurance premium payment, they mistakenly sent it to a hospital owned by HealthPartners rather than the health plan itself. The hospital didn't let the health plan know it had a payment from the Gaffers. Compounding the problem, the couple sent their October payment a couple of weeks later to the correct place but had insufficient funds to cover the amount.

The Gaffers got a letter from HealthPartners dated Oct. 8 canceling coverage back to mid-September. Caitlin was six months pregnant.

"It was a busy time in our life," said Corey, 32, who runs an architectural photography studio. "We made these two little mistakes, but were never given any notice that we were making mistakes until after the fact."

Why didn't the hospital and health plan communicate about the misdirected payment? After all, they are part of the same system and that could have avoided the problem altogether.

HealthPartners spokeswoman Rebecca Johnson said its hospitals are supposed to notify the health plan if they receive premium payments in error, but said that "even though we have this process, we are not always notified of this or not notified in a timely fashion."

As far as a past-due notice to the Gaffers, Johnson said HealthPartners' policy at the time was to include information on monthly statements about outstanding balances.

That, however, is different from getting a warning that "you will be canceled as of this date," said JoAnn Volk, a research professor at the Georgetown University Center on Health Insurance Reforms.

Still, the Gaffers' story does have a happy ending — including an apology and some new notification practices by HealthPartners — but not before they racked up lots of stress and nearly $30,000 in medical bills incurred while Caitlin was uninsured briefly during her complicated pregnancy.

Same Insurance, Different Rules

The ACA bars insurers from retroactively canceling policies if consumers fall ill or discover they are pregnant —things that could have occurred in most states before the federal law passed.

But it does allow allows cancellations for two reasons: false information on an application or failure to pay premiums.

Those who qualify for a tax credit — because they earn less than 400% of the federal poverty level, or roughly $50,000 for an individual — get a 90-day grace period after missing a payment. Also, the law requires insurers to notify those policyholders that they have fallen behind and face cancellation. If payment is made in full before the end of the 90-day grace period, they are reinstated. If not, they're canceled and medical costs incurred in the second and third months of the grace period fall on the consumer.

This policy keeps federal subsidy dollars flowing to insurers during the grace period, even if a consumer has a financial wobble.

It's different for people like the Gaffers, however, who make too much for a subsidy. They are subject to state laws and can be dropped much more abruptly.

Most states have a 30-day grace period to make a payment after the premium is due, said Tara Straw, a senior policy analyst at the Center on Budget and Policy Priorities. But how much prior notice insurers must give before canceling — if any — varies by state.

"In most states, plans would balk at also having to send a notice of delinquent premium," said Straw. "But notice is important for consumers so they can correct the situation and make the payment, especially in a case like this where they made an honest mistake."

It's a policy that harks back to a time before the ACA when individual consumers could be dropped for almost any reason. It isn't clear why the Gaffers received no notice.

Spokeswoman Johnson, when asked about the state requirement, wrote: "Members are notified of any outstanding balance on their monthly premium statements. They have a 30-day grace period."

HealthPartners told the state's insurance exchange as part of an inquiry into the Gaffer's case, that "as far as past-due notices go, we do not send letters for members that do not have [a subsidy]," an appeals document shows.

Following the attention on the Gaffer's plight, HealthPartners has a new policy, rolled out in March and April for customers who don't get subsidies: Those who fall behind will get a late notice around the 15th of the month, said spokeswoman Johnson.

That might have helped the Gaffers, but it is still far less time than the 90-day window the insurer must give by law to anyone who bought the same insurance plan but got a subsidy.

An Apology

As for the Gaffers, who scrambled for months trying to get coverage and went uninsured for a while, there's good news.

First, they got new coverage from a different insurer before they welcomed baby Maggie, born without a hitch and healthy in late January.

Months later, after fielding questions from "An Arm and a Leg," HealthPartners called the Gaffers: It wanted to reinstate them — and cover the outstanding medical bills racked up during their time uninsured.

"We've apologized to the family, reinstated their coverage and view this situation as an opportunity where we can do better," spokeswoman Johnson said in an email.

The Gaffers have learned a lot in the process.

"Being an advocate for yourself is such a huge thing," said Corey.

He's glad HealthPartners has now said it will send warnings to consumers who fall behind on payments.

Oh, and just to be sure, the couple's premiums are now on "auto pay" and "we have like eight calendar reminders set up," Caitlin said. "Today it popped up three times: 'Make sure insurance is paid.'"

Julie Appleby: jappleby@kff.org, @Julie_Appleby