By Cindy Steinberg
Cindy Steinberg is the policy chair for the Massachusetts Pain Initiative and the national director of policy and advocacy for the U.S. Pain Foundation.
“Charlie Baker vows to tackle state opiate problem,” was the Boston Globe headline two days after Election Day.
It’s good to hear from our newly elected governor that he plans to take steps to curb the ongoing problem with illegal use of prescription medication in our state. There’s little doubt that too many lives are being harmed by drug abuse and addiction.
But in a quest to fix one problem, policymakers need to consider the potential unintended negative consequences for the patients for whom these medications are a lifeline.
Gov.-elect Baker said in that Globe interview that he plans to convene a coalition of lawmakers, health care providers and labor leaders to confront the opioid crisis in our state. Representatives of the pain community — an estimated 1.2 million Massachusetts residents live with chronic pain — must be included in these discussions as well.
For many with chronic pain, the right medications mean the difference between a life worth living or not.
But despite these legitimate needs, more and more I’m hearing from residents of our state who are unable to access treatment that their doctors say they need and that they depend on. These are not addicts; these are people who are trying to manage their lives with debilitating conditions such as cancer, diabetic neuropathy, sickle cell, daily migraine, fibromyalgia, severe back pain and many others.
Not including members of the pain community in discussions about how these medications are prescribed, regulated and controlled marginalizes the lives of thousands of Massachusetts citizens who live with pain caused by a myriad of conditions and serious injuries.
There is not a silver bullet solution to solving the abuse of prescription drugs. We need to take a thoughtful, multifaceted approach to ensure that those who need pain medication have access to it, and that those who choose to abuse these medications are stopped. There is no group more invested in making sure that medications are responsibly controlled than members of the pain community.
Last legislative session, Massachusetts lawmakers did take a step forward: they passed legislation on medications specially formulated to deter abuse.
“Abuse deterrent formulations” are opioids with physical and chemical properties that prevent chewing, crushing, grating, grinding, or extracting, or contain another substance that reduces or defeats the euphoria that those susceptible to substance abuse disorders experience. The new law requires insurance companies to provide the same coverage for the new abuse deterrent formulations as non-abuse deterrents, and they are not permitted to shift any additional cost of these medications to patients. It makes doctors more able to prescribe these medications without pushback from insurance companies.
Abuse deterrent formulations are not the only solution, but they are a good first step in balancing the legitimate needs of pain patients with the need to reduce medication abuse.
Other efforts must also include more robust education of medical professionals and of consumers to keep the medication out of the hands of potential abusers in the first place. Government statistics show that 78.5 percent of those who abuse prescription pain medication did not obtain them from a doctor themselves.
As someone who personally suffers from debilitating chronic pain, I have firsthand experience with the myriad challenges faced each day by the millions of Americans with severe chronic pain. I encourage Governor Baker to work to eliminate improper use of prescription medications, while remembering the medical needs of the chronic pain community.
Cindy Steinberg tweets at @CindySteinberg_.
A Los Angeles furniture store worker who had never had health insurance enrolled in a plan for $75 a month that will cover both him and his son.
An unemployed accountant in Charlotte, N.C., who tried and failed to sign up last year found coverage for $11.75 a month.
A self-employed house contractor from West Palm Beach, Fla., found a health plan that will cost him nothing.
They were among more than 100,000 Americans who signed up for coverage Saturday through the Affordable Care Act’s online insurance exchanges, which launched this weekend with far fewer problems and less fanfare than last year. Many people qualified for federal subsidies that kept their monthly premiums well under $100.
“The vast majority of people coming to the site were able to get on and do what they were intending to do,” Health and Human Services Secretary Sylva Burwell said Sunday on NBC’s Meet The Press, adding that 500,000 people had signed onto the website.
By most accounts, the federal marketplace that handles enrollment for 37 states ran smoothly — a far cry from last year’s disastrous rollout that turned www.healthcare.gov into an embarrassment for President Barack Obama, spurred several staff departures and made the site virtually unusable for two months.
State exchanges that had encountered big problems last year — including Maryland, Massachusetts and Hawaii—all reported no major issues this weekend.
Still, there were some hiccups, with consumers and enrollment counselors facing sporadic delays accessing the website to set up an account and buy coverage. Some of those who bought coverage last year had trouble getting into their accounts because they had forgotten their passwords.
Meanwhile, the insurance exchanges run by 13 states and the District of Columbia functioned well — with the exception of the one in Washington state, which was shut down Saturday because it was giving out incorrect subsidy information. The site was fixed and back online Sunday morning.This KHN story can be republished for free (details).
To give consumers assistance, enrollment events were held across the country over the weekend, at hospitals, clinics, churches, community centers, malls, libraries – even at the Rock and Roll Hall of Fame in Cleveland.
“It was awesome,” said Joy Floyd after she got help buying a plan for $11.75 a month at the Children and Family Services Center in Charlotte, N.C. She had tried and failed to sign up for coverage last year because of website problems.
Like most enrollees, Floyd will face additional cost-sharing as a result of deductibles and co-pays when she sees doctors, gets tests or buys prescriptions.
Despite this year’s far smoother opening, the enrollment process continues to face plenty of uncertainties, including the response of a confused and still uninformed public, among them 20 million uninsured who did not enroll the first year; a shorter enrollment period and premium increases that many of the 7 million people who bought coverage last year will face unless they shop around.
Recent political and legal developments also cast a shadow, including a hostile GOP taking control of Congress in January and the Supreme Court’s decision to hear a challenge to the subsidies that millions of people have relied upon to reduce the cost of their coverage.
Ricot Telcy, 37, a West Palm Beach, Fla., security guard, knew nothing about the legal challenge, but was pleased to learn he and his wife could get coverage for about $300 a month—about the same price his wife had been paying for herself.
Across town, at an event at a medical society office, Rick Pierre, 40, enrolled in about an hour in a plan that will cost him nothing in premiums because he qualifies for a large subsidy. “I’m very excited,” he said.
The Obama administration expects about 9 million people to get coverage on the exchanges before open enrollment ends Feb. 15. The marketplaces are a cornerstone of the health law because they help expand health coverage to millions of Americans who do not get health coverage at their jobs. More than eight in 10 people buying policies last year received a government subsidy to lower their premiums.
People must enroll by Dec. 15 if they want their coverage to start in January. In most states, those who bought coverage last year will be re-enrolled automatically if they do nothing by that date – a scenario that could result in higher costs since most premiums and benefits are changing.
The exchanges and the publicity around them also spurred millions of people to sign up for Medicaid, which has expanded eligibility under the health law in 27 states.
Some Wrestle With Higher Premiums, Confusion
In Philadelphia, Joseph Krakauskas, a retired 62-year-old, showed up two hours early at an enrollment event to secure a place at the front of the line. He has just found out that his current premiums were going to triple next year and he needed help finding a new plan. “This is almost like a bait and switch,” he said of the rate increase. “I can’t believe they’re getting away with this.”
Krakauskas wasn’t able to access his account through the website, however. Still, a counselor found him an HMO plan for $128 a month, higher than he was paying last year, but about half of what his old plan would cost in 2015.
Despite the government’s efforts to streamline the application, confusion and difficulty navigating the website also brought in many people, including Sarah White of Philadelphia, a mother of two.
“I have a doctoral degree,” she said. “The fact that this is so complicated for even someone with [her education] is ridiculous. But here I am trying to get help and I have hope.”
Demand for coverage was particularly high in California, where 1.2 million residents signed up for coverage last year.
By 9 a.m. Saturday, dozens had lined up for a festive enrollment event in Los Angeles sponsored by SEIU-United Healthcare Workers West. Most of the applicants came prepared – holding envelopes with pay stubs, birth certificates and Social Security cards. As each finished signing up, volunteers cheered, applauded and snapped photos.
Alejandro Irigoyen, 45, said he missed the deadline last year and didn’t want to risk doing that again. When he injured his foot recently, he paid about $500 for a doctor’s visit, X-rays and medicine. With the help of an enrollment counselor, Irigoyen signed up for a plan which will cover both him and his 23-year-old son for about $75 a month.
“I feel much more secure,” Irigoyen said.
The enrollment event took place in a heavily Latino neighborhood, and most of the counselors spoke Spanish. California exchange officials had been heavily criticized last year for not doing enough to reach out to the state’s large Latino population. Several of the families at Saturday’s event said they hadn’t previously enrolled in coverage because they have family members who are in the country illegally and feared telling the government too much.
After being reassured their information wouldn’t be given to immigration authorities, Crescencio Lorenzo, 48, a legal resident, came to the enrollment event with his daughter, Andrea, a U.S. citizen, and his wife, Susana Lorenzo, 48, who is in the country illegally. He and his daughter enrolled in Medicaid. “They told us not to worry,” about jeopardizing his wife, he said.
Weather And Glitches Are Issues In Ohio, Washington
Some enrollment events failed to draw consumers, including the “Rock Enroll” event at Cleveland’s Rock and Roll Hall of Fame. Officials blamed snow flurries. By mid-afternoon, Barb Wynveen, a navigator with the Carmella Rose Health Foundation, said she’d had no walk-ins, and all of her half-dozen scheduled appointments had been a bust.
There was more foot traffic at Northeast Ohio Neighborhood Health Services, a community health center primarily serving the poor. Counselor Khalil Ismail met with Prempal Kaur, a woman in her 50s who spoke mostly Punjabi, and her daughter, Ravinder Kaur, who translated.
“She’s a citizen. She’s a widow, a single mother,” explained Ravinda Kaur, who had traveled from Chicago to help her mother apply for insurance coverage. “And she works at the Convenient Food Mart, where she makes minimum wage.”
Before she left, Prempal Kaur was enrolled in Medicaid.
In Washington state, meanwhile, the shutdown of the website to fix a glitch led people to start filling out applications the old-fashioned way — with paper and pen.
“It’s incredibly frustrating,” said Gary Zablocki, a 51-year-old carpenter at an event at the Southcenter Mall in Tukwila, a Seattle suburb.
Joanna Richards at WCPN in Cleveland , Elana Gordon at WHYY in Philadelphia, Ann Doss Helms at The Charlotte Observer, Nick Nehamas at The Miami Herald, Lisa Stiffler and Patrick Marshall at The Seattle Times, Jordan Shapiro at the St. Louis Post-Dispatch, Wes Venteicher at The Chicago Tribune and Robert Calandra at The Philadelphia Inquirer also contributed.
As Americans begin shopping again for health insurance under the Affordable Care Act on Saturday, they’ll be wrangling with premiums, deductibles, out-of-pocket costs and other vague and confusing insurance-speak.
Believe it or not, that’s the easy part compared to figuring out what the overall cost of health care is.
Sal Morales of Miami bought insurance in March during the ACA’s first enrollment period on healthcare.gov.
“I got my cards and it was like amazing,” Morales says, “like if I got an American Express Platinum card. That’s how I felt.”
Morales was unemployed at the time. Money was tight. And he knew he needed regular doctor visits to manage his high blood pressure. He diligently researched what he would get for the price before settling on a plan.
“Instead of me paying $560 [a month] for COBRA, I found out that I would have insurance for $145. I have a network deductible of $500,” Morales says. “My first three visits to a primary care physician, they’re zero dollars. Then it’s $5 out of my pocket.”
Morales understands his end of the health care equation, but what he sees doesn’t necessarily reflect what gets paid to doctors and hospitals for his care, says Bruce Rueben, president of the Florida Hospital Association.
Here’s how he breaks it down: “There’s one party, the hospital who provides the service. There’s a second party, the patient, who receives the service. And there’s a third party, the insurance, who pays for the service.”This story is part of a partnership that includes WLRN, the Miami Herald, NPR and Kaiser Health News. It can be republished for free. (details)
That third part is where health care pricing gets really squirrelly.
Every hospital has its own “master list” of charges for different services. Those charges are different from hospital to hospital.
But insurance companies don’t pay those listed charges. The listed charges are almost fiction. Instead, each insurer negotiates for lower prices with each hospital and doctor on every plan. And insurers can have multiple plans with multiple agreements for the same hospitals or doctors.
Even if two patients have the same insurer, if their plans are different, the insurer may pay the doctor differently for the same care for each of the patients.
All of this means there are about as many pricetags for that hypertension checkup as there are insurers and providers.
“For an individual consumer I am completely sympathetic that it’s very confusing,” says Dr. Ezekiel Emanuel, who was an adviser to the president during the drafting of the health law and is now a health policy expert at the University of Pennsylvania.
“There are at least six different prices for a hospital day. And then there’s the cost of actually delivering the service, which, for most of these things, even hospitals don’t know what that is. So when you say, ‘What’s the price?’ It’s almost a meaningless question, because there [are] all these different prices.”
Those negotiated rates—the prices insurance companies really pay hospitals—are treated like trade secrets. Insurers and many hospitals don’t want their competitors to know what the payments are
It is only on an individual basis that people can see the prices their insurer paid for their care. And it’s after the care has been delivered and only if the person is already insured.
It’s buried in a statement called an explanation of benefits. These are the letters from insurers that look like a bill but say “this is not a bill.”
Efrain Monzon helps patients interpret those explanations for Florida Blue, the largest insurance company in the state of Florida.
“We’re identifying the procedure, we’re identifying the provider, the date of service and then making sure the amount, the member responsibility has to be in there,” Monzon says.
Wedged into that statement somewhere between the billing code and the member deductible, is a column for the amount paid.
This is the secret number the insurance company and the provider have worked into their contract, says Monzon. The industry terms are usually “adjusted rate” or “negotiated rate.”
In Florida Blue’s explanation of benefits to patients, it’s called simply “amount paid.”
To get a clearer sense of what health care costs, someone would have to collect enough of those statements from patients at all different hospitals with all different insurance.
There are companies and crowdsourcing projects trying to do just that around the country. And Massachusetts has a law that says insurers have to disclose some of these prices in a way that is accessible to patients.
But so far, that’s not happening in South Florida.
In 1910, the American Antiquarian Society donated an 8-foot-4-inch-tall plaster cast of Michelangelo’s statue of Moses to the Worcester County Law Library Association. Moses assumed a place of honor in the Worcester Courthouse in Lincoln Square. For 97 years thereafter, Moses became the meeting place within the Courthouse for lawyers and their clients. When the Courthouse moved down Main Street to its new location, Moses came along. Ten inch tall replicas of the statue are now for sale by the Worcester County Law Library Trust, initially offered to recoup the cost of repairs to the statue; but the smaller cousins have become coveted artifacts. The replicas are on view at the Worcester Law Library.
Any visitor to the John Adams Courthouse in Boston will be impressed by Domingo Mora’s figural representations of sixteen ideas related to Law and Justice in the Great Hall. In the same location, there is a bronze statue of the nineteenth century attorney, Rufus Choate, by Daniel Chester French. A recent cleaning of the work has obscured the fact that practicing attorneys had a habit of rubbing Rufus Choate’s left foot for good luck before going into the Courtroom, giving it a particular shine.
Prominent among Daniel Chester French’s teachers was a sculptor named Thomas Ball. One of Ball’s favorite subjects was orator and attorney Daniel Webster. In 1853, a series of bronze casts were made of Ball’s clay statuette of Webster. Examples of these statuettes are currently in the collections of the U.S. Senate and the Metropolitan Museum of Art, and on view at the Berkshire Law Library. In 1876, Ball went on to sculpt a much larger (14’) version of the statute that stands today in New York’s Central Park. At the Law Library, Daniel Webster has a series of festive hats (several top hats, a straw hat, a sombrero) that he can be seen to sport.
Art appreciation, in the case of the statues of Moses, Rufus Choate, and Daniel Webster, is about looking and recognizing the story that is there waiting to be told.
Here’s the report as of 2 p.m., six hours after the state launched a new website for residents who want to buy insurance or are signing up for free or subsidized coverage.
- 2,117 enrolled in MassHealth (the state free Medicaid program)
- 1,923 shopped for subsidized or unsubsidized insurance
- 477 people selected a plan
The Connector does not know how many people received error messages and had to start over. But here’s a sample of complaints posted to the Connector’s Facebook page.[Storify]
The Connector says the average wait time for those who were instructed to call the Connector’s help center was 20 minutes this morning, but has been eliminated because the Connector added more customer service reps Saturday afternoon.
Some people were able to enroll with few, if any problems.[Storify]
So the new site works and that, by itself is a success, say some people who’ve struggled to enroll or help residents do so for the past year. But lots of people are asking why — when the state has spent $254 million between the old, failed site and this new one — they are still having so much trouble signing up for a health plan.
Updated at 1:30 p.m.
The new Health Connector website for Massachusetts launched successfully Saturday morning and was working as designed upon launch.
“All right, everyone ready to see this thing go up live? Let’s do it,” Maydad Cohen, who oversaw the effort, said to applause just before 8 a.m. Saturday.
The new website allows Massachusetts residents to browse health plans, find out what program they qualify for and complete an application during the open enrollment period between Nov. 15, 2014 and Feb. 15, 2015.
They will also be able to compare plans, including premiums, co-pays and benefits. People who meet income eligibility requirements can get help paying for their coverage through the Health Connector or free coverage through MassHealth.
Nearly a year ago, the former site crashed repeatedly and the state spent millions of dollars to launch the redesigned site.
Deputy Medicaid Director Robin Callahan said the governor’s involvement in the redesign meant a lot to the team building the site.
“I think that’s one of the things we didn’t have the first time around — a real organizing, strong presence,” Callahan said.
Jean Yang, executive director of the Health Connector, said she’s excited about the new site, compared to last year’s.
“A difference of night and day, for the very first time we’re going to be seeing people getting determined for qualified health plan, real time,” she said.
The state expects more than 400,000 people will get their health insurance through this website.
Clarification: This post’s headline was updated to reflect the fact that the website appeared successful upon launch, but more information is forthcoming about its performance.
Tomorrow it begins again – open enrollment for Obamacare. Two very successful state health insurance exchanges, Connecticut’s and California’s, are both intent on reaching people who avoided signing up last year – especially young Latinos and African-Americans.
“The big takeaway for us last year was that the uninsured were really pocketed in a couple of key, large cities,” says Jason Madrak, the chief marketing officer of Access Health CT, in Connecticut. In light of that, he says, the exchange has changed its ad strategy.
“We’ve dialed up some of the more locally-focused efforts while we’ve dialed down some of the broader efforts,” he says.
The uninsured people Madrak’s trying to reach tend to be young, male, urban and Hispanic or African American. They also “aren’t really consumers of traditional media,” he says.
They don’t necessarily read the big daily newspapers and they don’t watch mainstream TV, so they can be harder to reach. So Madrak is spending his media money on ads in community newspapers and on local television and radio.
Reaching potential customers is the first half of the job. The second half is figuring out what to tell them. One emphasis is on money, like in this TV ad with a barber asking his customer if he has health insurance. When the customer says, “No, I can’t afford it,” the barber says, “Now, you can, with Access Health CT, since you may qualify for help to pay for your coverage.”
Madrak says the messages of ads that appear later in the open enrollment period, as people are starting to think harder about choices, will be more specific about the cost of the insurance.
We need to go from a culture of coping to a culture of coverage.- Peter Lee, executive director, Covered California
“If I say ‘affordable,’ nobody really knows what that means,” he says. “If I say, ‘I can get you a plan for 20 bucks a month with tax credits,’ that means something to somebody at that point.”
California health officials are also deploying a new and (they hope) improved campaign to woo Latinos. Last year, Covered California made a series of missteps. First, the exchange had only a handful of Spanish-speaking counselors at the call centers. And the Spanish advertising campaign was riddled with cultural oversights.
Among the worst gaffes: Some Latinos who worried that signing up would get undocumented relatives in trouble were shown a written promise from President Obama to the contrary – a note that, unfortunately, was printed on letterhead of U.S. Immigration and Customs Enforcement.
Covered California says it has learned from those mistakes. Peter Lee, the executive director, says this year, the agency is doubling down on making sure Latinos get the right messages.This story is part of a partnership that includes WNPR, KQED, NPR and Kaiser Health News. It can be republished for free. (details)
“We’re actually spending more money on outreach, education, and marketing this year for a three-month period than we spent for six months last year,” he says.
The agency has hired 200 new call center counselors who speak languages other than English, Lee says. It is enlisting more trusted community organizations to allay fears about deportation. And it’s rolling out a new ad campaign tailored specifically to Latinos.
“Every person you see [in these advertisements] that is a Spanish speaker is a Latino who got coverage through Covered California this last year, and it made a difference in their lives,” says Lee.
This new video commercial shows pages of immigration documents flying into a safety vault – accompanied by verbal assurances that the application process is confidential.
But the main challenge, Lee says, is persuading Latinos to buy something they don’t believe they need or is worth the price.
“They’ve adjusted to a culture of coping,” he says. “We need to go from a culture of coping to a culture of coverage.”
Still, a woman in a recent focus group in Connecticut showed Madrak that even the best messages might not work.
“She said, ‘Listen, I saved everything that you guys sent me,’ ” Madrak says. ” ‘I have a box of postcards and letters that you sent me because it has the phone number on it and I wanted to save it.’ And we said, ‘Did you call?’ And she said, ‘No, I never called.’ And we said, ‘But you saved it all!’ And she said, ‘I know, I knew it was important; I just never got around to actually doing it.’ “
That, Madrak says, is the big, continuing challenge.
Open enrollment runs from Saturday, Nov. 15 through Feb. 15, 2015.
…to finish the sentence in the headline: But it was not the simple no-brainer that you might think.
Lung cancer is the biggest cancer killer of all, causing 160,000 American deaths a year. But should we use lung scans to screen longtime smokers en masse for it? That question has been vigorously debated of late in medical circles, as Medicare has weighed whether to pay for the scans.
This week, Medicare announced that it did indeed propose to cover annual low-dose CT scans for smokers and former smokers, ages 55 to 74, with a smoking history equivalent to a 30-year pack-a-day habit. (More details here.)
The draft decision now gathers public comment for a month and will still need to be finalized, but cancer activists and some doctors are already hailing it as a victory. Laurie Fenton Ambrose, president of the Lung Cancer Alliance, which had helped lead the push for the coverage, predicted that the scans would save tens of thousands of lives.
Well, first, the pendulum has been swinging lately towards greater skepticism about routine cancer screening, from mammograms to prostate tests.
At issue is the pivotal question of whether some forms of cancer screening do more harm than good, given that some of the tumors they pick up would never have caused any trouble. Routine blood tests for prostate cancer have fallen out of favor, for example, and the New England Journal of Medicine just published a cautionary tale from Korea about how mass ultrasound scans for thyroid cancer saved no lives.
So that’s the broader medical context. Then there’s the money. I recently heard a Medicare official say with pained realism at a public forum, “We can’t cover everything good.” Close to 5 million people on Medicare would be eligible for the screening, NPR reports, and the scans cost an estimated $241 each.
So at a time of greater emphasis on health costs and greater doubts about cancer screening, “We just found ourselves caught in that crossfire,” said Fenton Ambrose of the Lung Cancer Alliance.
With lung cancer, there’s also the question of special stigma. People say “You deserve this because you brought it on yourself, and thus, suffer the consequences,” Fenton Ambrose said. “It has always had that type of stigma, that even carried through in some of the public comments that came forth during the Medicare consideration.”
Dr. Chrisopher Lathan, a medical oncologist at the Dana-Farber Cancer Institute, similarly cited stigma as a source of “hesitation” on the coverage. “This is a cancer that’s heavily linked to a behavior,” he said. “The amount of data needed to convince everyone that this was a good screening tool — that hurdle was much higher. And also, we are in a more skeptical time, academically, when we look at screening. We know that screening is good, but it’s good in certain circumstances.”
Which circumstances, when it comes to lung scans? This is the moment for the Public Service Announcement that says, “Talk with your doctor.”
“At the end of the day, this is about the relationship between doctors and patients,” Fenton Ambrose said. And in particular, there are some gray areas that require discussion, she noted. What if, for example, you’re a bit younger, or smoked a bit less than the cut-off? Research is now under way on that “second tier” of potential scan subjects, she said.
The Harvard Health Blog offers this guide to risks of lung cancer CT scanning you might want to discuss with your doctor:
•False alarms. In the New England Journal of Medicine study, about a quarter of people who had low-dose CT screening for lung cancer had positive tests, which set them up for additional CTs, bronchoscopies, or biopsies. Ultimately, only about 5% actually had lung cancer. False alarms can be quite stressful, and the additional testing can cause problems.
•Radiation exposure. Although the risk is low, some people develop radiation-induced cancers.
•The test could pick up a cancer that is unlikely to cause problems in your lifetime.
•Availability of quality testing. It’s important to have CT screening at a medical center that has experience in lung cancer screening and treatment and that offers follow-up counseling based on your results.
For those who like to delve into the stats themselves, the numbers abound. The one most often cited by scanning supporters comes from a big, gold-standard study called the National Lung Screening Trial, which found that screening cut cancer mortality by 16 percent. From the “pro” paper in JAMA Internal Medicine:
The National Lung Screening Trial (NLST)9 randomized 53 454 patients at high risk of lung cancer to 3 annual screenings with low-dose CT or single-view posteroanterior chest radiography. The trial was stopped early when interim analysis demonstrated a 20% lung cancer mortality benefit. A follow-up analysis recalculated this as an overall 16% benefit, but with a substantially greater benefit in women than in men (27% vs 8% mortality reduction).
But even now, with the new endorsement from Medicare, low-dose CT scans may remain a tricky decision for doctors and patients.
In a recent update in their series, “Slow Medicine,” Dr. Pieter Cohen of Cambridge Health Alliance and Dr. Michael Hochman of Altamed Health in Los Angeles expressed their lingering reservations:
In routine practice many things change compared to a carefully done randomized controlled trial — the expertise of the radiologists, the meticulousness of follow-up and carefully ensuring the correct selection criteria (avoiding indication creep). But even when all this was carefully managed in the NLST [National Lung Screening Trial] there was still a 96% false positive rate from the CT scans which would certainly increase in the community…
The key article used to promote this practice — the NLST — has an extremely key flaw: smoking cessation was not offered/provided prior to randomization. No one should be screened for lung cancer using CT or any other test if they haven’t already been offered comprehensive, state-of-the-art smoking cessation. But even if smoking cessation is offered first, we are not convinced that the management of abnormal CT scans in the community will be able to live up to what was achieved in the NLST.
Dr. Lathan of Dana-Farber cited another concern: that smokers who get CT scans and check out healthy may become likelier to keep smoking — though there’s no data to bear that out, he said.
As the scales tip toward lung-cancer screening, he said, patients should seek out high-quality screening centers — and among other things, that means making sure there’s a quit-smoking program included.
“All these screening programs should also be tied to a smoking cessation program,” he said, “so that you can use it as a teachable moment for a person who might be smoking. If they’re smoking, you can say, ‘Whoa, would you like to quit smoking? Yes, we’re going to do your CT scan, screen you for lung cancer, but let’s address your smoking issue at the same time.”
To end on a hopeful note: Dr. Edward Benz, president of the Dana-Farber Cancer Institute, said this week on Here & Now that he thinks many of the controversies over cancer screening — like this one — will soon give way to more targeted strategies.
“I think that the future, and the not-too-distant future, will be that we will be able to use other tests to pull out of the population those people at highest risk, where those screening tests will have the most effect,” he said.
Readers, thoughts? What do you think of the Medicare decision?
By Nell Lake
For Eileen, who is disabled and reliant on a wheelchair to get around, life in a nursing home isn’t easy. Particularly when it comes to the other residents: “There’s this guy,” she says. “He made advances to me all the time. I did not want his advances. Many times I had to take my grabber and actually strike him to get him to leave me alone.” Another resident, Eileen says, is a “real bully. She has terrorized quite a few people. She tries to boss people around. She says harassing things.”
In coping with this type of hostile behavior, Eileen (who asked not to be identified) has plenty of company. New research released last week shows that aggression among residents in nursing homes is widespread and “extremely high rates of conflict and violence” are common, according to study author Karl Pillemer, professor of gerontology in medicine at Weill Cornell College of Medicine in New York. His stark findings, presented at the annual meeting of the Gerontological Society of America: One in five people living in the nursing facilities studied was involved in at least one “negative and aggressive encounter” with another resident during a four-week period.
“In most environments — say my work environment at a university — someone yelling at me angrily is so unusual that it would keep me up all night worrying about it,” Pillemer says. Yet such conflict in nursing homes appears to be routine.
Abuse and Mistreatment
As part of the study, researchers examined patient records at ten nursing homes in New York state, interviewed staff and residents, and recorded incidents through direct observation. In a sample of more than 2,000 residents, 16 percent were involved in incidents of cursing, screaming, or yelling; about 6 percent in physical violence such as hitting, kicking, or biting; one percent in “sexual incidents, such as exposing one’s genitals, touching other residents, or attempting to gain sexual favors”; and 10.5 percent in events researchers labeled “other” — residents entering rooms uninvited, for example, or rummaging through others’ belongings.
Abuse and mistreatment of the elderly in general — in their homes and in nursing facilities — is a serious and growing problem. The elder population is burgeoning; the number of vulnerable elderly is increasing; more and more people need care—and nursing homes are often understaffed. Because abuse is usually hidden, data on abuse is difficult to gather. The problem is very likely vastly underreported, according to the National Center on Elder Abuse. Surveys tend to miss elders who don’t have a phone, who are too frail to answer it, or who can’t respond truthfully about their situations because their abusers are present. Research finds that at least one in ten elderly people who live at home experience abuse each year, according to the National Center on Elder Abuse. (This figure does not include financial mistreatment.)
The great majority of abusers in these cases are family members. Rates of abuse are especially high among elders with dementia: as many 50 percent of people with Alzheimer’s and other dementing diseases may be mistreated.
Abuse of elders by staff in nursing homes is also pervasive. One survey of certified nursing assistants found that 17 percent of CNAs had physically abused residents, 51 percent had yelled at them, and 23 percent had insulted or sworn at them.
Crowded Conditions and Understaffing
Resident-on-resident aggression has received less study and publicity — but “it happens all the time,” says Diane Menio, executive director of the Center for Advocacy for the Rights and Interests of the Elderly in Philadelphia. Pillemer’s study found that the residents involved tend to be among the more active and cognitively intact in a nursing home — they’re the ones who are more engaged.
Mild to moderate dementia is clearly a factor in much of the aggression, however, because it causes disinhibited behavior. Other factors, Pillemer says, include:
• Crowded conditions: The study found higher rates of mistreatment in more crowded facilities, and in areas within facilities where residents were more densely gathered.
• Understaffing: The study found higher rates of resident-on-resident aggression in nursing homes with lower staff-to-resident ratios.
• Nursing-home workers who are inured to the problem: “Staff can become somewhat blinded to this,” Pillemer says, “because of the frequency with which it occurs.”
• Conflict’s cyclical nature: “The negative behavior and effects are contagious,” Pillemer says. “Seeing these incidents causes other residents to be fearful, anxious, concerned—and that can lead to more of the behavior.”
The prevalence of such aggression raises questions about how well U.S. nursing homes are meeting the great and growing need for compassionate, skillful long-term care. In many ways, aggression among nursing home residents is more complicated than other forms of elder abuse. When a family member or nursing-home worker abuses a vulnerable elder, the perpetrator is clear. But resident-on-resident aggression is more systemic and much less clear cut.
It needs to be addressed, many experts believe, not by thinking in terms of perpetrator, victim, and punishment, but by looking at causes and prevention — by improving care. Laura Mosqueda, a practicing geriatrician and director of the National Center on Elder Abuse, believes that nursing homes should be seen as responsible for easing aggression. “Let’s not forget that the people [in this study] … are some of the most vulnerable members of our society. Even if they’re the ones who are ‘perpetrating’ some of this, they’re not the ones who should be held accountable,” Mosqueda says.
If, for example, inadequate staffing is linked to the problem, as the study found, then facilities should hire more staff, she says.
Mosqueda, Pillemer, and others say that staff need to better understand the root of the problems. For instance, Pillemer asks, “Is someone being aggressive because they’re in pain? Are they being aggressive because they’re hungry or bored? Personalizing the care for residents, understanding why they [become aggressive], and looking for individual solutions are very important.”
Alison Hirschel, the elder law attorney for the Michigan Poverty Law Program and director of the Michigan Elder Justice Initiative, agrees. She cites cases in which relatively simple adjustments by nursing-home staff eased elders’ “difficult behaviors.” One man, a former police officer, had worked the night shift for decades before going into a nursing home. Staff expected him to sleep at night; but he found this impossible, and became frustrated and aggressive. Eventually the nursing aides figured out what would help. They gave him a clipboard and allowed him to wander around his unit at night. His frustration and challenging behaviors eased.
Another woman, who’d lived in an abusive orphanage as a child, did better when treated in ways that didn’t trigger terrifying memories. And a blind resident needed to hear from staff the steps they’d take as they bathed her.
Such adjustments by staff require knowledge of residents’ emotional needs and of their life histories — not just of residents’ medical charts. Acquiring such knowledge takes greater effort and skill, but Pillemer says that workers are generally eager to learn how to better address aggressive behaviors. “Staff feel very powerless to deal with this,” he says. “They don’t quite know how to handle it.”
He believes that better training for nursing-home workers is essential to help them deal with aggression more skillfully, to protect residents and to keep themselves safe. “These violent and aggressive and conflictual incidents are extraordinarily stressful for staff,” he says. Workers, too, are at risk of being injured.
Hirschel, the lawyer, acknowledges that not all difficult behavior can be solved through simple, compassionate adjustments to residents’ treatments and circumstances.
“Residents with these behaviors do have a negative impact on other residents,” she wrote in an email, and “sometimes these issues are really intractable and challenging for even the most skilled and thoughtful staff.”
Diane Menio, the elder advocate in Philadelphia, tells a story about her own experience with “problem behavior” in nursing homes — her mother’s. Menio’s mother had Lewy-Body dementia (which can cause hallucinations) and lived in a facility at the end of her life. The staff at the facility loved her mother, Menio says, and saw her as “a sweetheart.” But one day, in a dining area, Menio’s mother threw water from her glass at a woman sitting at the same table. The woman had been bothering her mother. Not long after, staff sat the same woman next to Menio’s mother, who again threw water.
“So they wanted to medicate my mother” with a psychotropic drug, Menio says. This, Menio believed, was misguided. She asked the staff to keep the two women separate, and her mother never threw water again.
Menio’s story highlights a tricky issue. In 1987, a federal law declared that residents have “the right to be free” from both physical and chemical restraints when these are not required for treating medical symptoms.
The law was responding, in part, to practices in nursing homes such as tying “difficult” residents to beds or chairs.
No More Bullying
Today antipsychotic drugs are still used in nursing homes, usually therapeutically but sometimes as “chemical restraints” in response to difficult behaviors. With reform, such use has declined. While the Weill Cornell study illuminates the problem of resident-on-resident aggression, Mosqueda says, this shouldn’t mean “we end up putting people back in restraints.”
As with many complex issues, the first step toward easing resident-on-resident aggression, many experts agree, is greater recognition and understanding of the problem. Pillemer recalls the days when bullying in schools was considered normal — a dynamic that kids needed to tolerate and learn to deal with. “The idea that we’d even tell our parents [about being bullied] was inconceivable,” he says.
“Now things have changed, and standards have changed, and schools are taking on no-bullying policies. I think the same thing needs to happen in the nursing home context. The goal of this study was to show that this is a very frequent phenomenon — a disturbing and potentially damaging phenomenon for probably everybody in the nursing home setting. We need to begin the search for good solutions.”
Nell Lake, a journalist and magazine writer, wrote the new book, “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love” in which she chronicles the lives of family caregivers over two years. She lives in Western Mass.