Jay Zimmerman got his first BB gun when he was 7, and his first shotgun when he was 10.
“Growing up in Appalachia, you look forward to getting your first firearm,” he said, “probably more so than your first car.”
His grandfather taught him to hunt squirrels and quail. Zimmerman, who lives in Elizabethton, Tenn., said pretty much everyone he knows has a gun. It’s just part of the culture.
“When I went into the military, that culture was reinforced,” he said. “Your weapon is almost another appendage. It’s part of who you are.”
Zimmerman served as a medic in the Army in the late 1990s and early 2000s, with stints in Bosnia, Africa and the Middle East. Since he came home, he’s struggled with PTSD and depression. It reached a crisis point a few years ago, when his best friend — the guy who had saved his life in a combat zone — killed himself. Zimmerman decided his time was up, too.
“I decided that I would have one more birthday with my daughter, one more Christmas with my daughter,” he said. “I had devised my own exit strategy for 16 February 2013.”
But then he bumped into a woman who used to ride the same school bus when they were kids. His exit date came and went. They’re married now.
Zimmerman still gets depressed, but now he’s a peer counselor at the Mountain Home VA Medical Center in Johnson City, Tenn. He also travels to conferences all over the country, sharing his story with therapists and with other vets, encouraging them to ask for help when they need it.
Even today, he explains at these conferences, if he’s not doing well, he disassembles his guns and stores them separately from ammunition, so he can’t make any rash decisions. And if things get really bad, Zimmerman has a special arrangement with a few friends.
“I call them and say, ‘Look, I’m feeling like it’s not safe for me to have firearms in my home. Can you store them for me for a couple days till I feel like I’m OK to have them back?’ ”
Suicide is often an impulsive act. Nearly half the people who survive an attempt say the time between their first thought of suicide and the attempt itself was less than 10 minutes. But the method can mean the difference between life and death: People who take pills have time to change their minds, or may still be alive when discovered. That’s not the case with guns.
Almost 70 percent of veterans who commit suicide do so with a gun, which prompted President Barack Obama to order the VA to talk to vets about gun safety and storage options like the ones Zimmerman uses.
But here’s the trouble: Most therapists aren’t gun people. They don’t know how to talk about guns and so they don’t.
“One obvious reason for that is that no one has taught them how,” explained Megan McCarthy, a psychologist and National Deputy Director in the Office for Suicide Prevention in the U.S. Department of Veterans Affairs.
McCarthy was invited to speak recently at a suicide prevention conference in San Francisco, aimed at therapists who work with vets.
“How many of you would say you feel really comfortable having a conversation with any of the people you work with about limiting access to all lethal means?” she asked the roomful of therapists.
Hardly anyone raised their hand.
“OK, so that’s why we’re here today,” she said.
Researchers recommend starting with a field trip to a shooting range. There, therapists can learn about different kinds of firearms, as well as gun locks, and get an introduction to gun culture.
When counseling vets, therapists have to ask more questions and be less directive, McCarthy said.
“We often conceive of ourselves as experts — as people who impart information to clients,” she said. But with vets, “it may take time to build trust. Telling them what to do the first time you’ve met them is probably not going to be a very effective approach.”
McCarthy presented a case study at the conference: A 28-year old, unmarried Army veteran who fought in Iraq told his VA psychiatrist that he had an argument with his girlfriend last week. He drove to an empty parking lot and sat with his loaded handgun in his lap, intending to kill himself.
He didn’t do it. A week later, the man told his psychiatrist things were still tense with his girlfriend. But he didn’t want to talk about suicide or storing his gun.
McCarthy asked the clinicians in the audience what they would do next, if they were this man’s psychiatrist.
“Why did he not do it? That would be my question,” one therapist said.
“I would want to see this individual again, within the same week,” said another. “I believe in strong intervention.”
Jay Zimmerman, the former army medic and peer counselor, stood up and explained his different perspective.
“Chances are the reason he’s not talking to you is because he’s afraid he’s going to lose his gun that he carries pretty much all the time,” Zimmerman said. “My buddies are the same way. We all carry — all the time.”
A lot of veterans would sometimes rather confide in a fellow vet than someone in a white coat, Zimmerman said. And that was an unusual takeaway for the professional counselors: Sometimes their role is not to intervene at all, but to be a facilitator. To make sure vets have someone to talk to outside the therapy office.
Your federal income taxes are due April 18 and, likely for several million people, so is a fine for failing to get health insurance.
Despite a lengthy debate, Congress has not yet acted on a bill to repeal portions of the Affordable Care Act. That means the law and almost all of its regulations remain in force, for now.
For the majority of tax filers, who had insurance through an employer or government program for 2016, all they have to do is check the box on Form 1040 that says they were covered for a full year. That’s it.
Under a decision by the Trump administration, however, leaving that box blank will not get your tax return kicked back to you. The IRS under President Barack Obama also did not reject returns with the box left blank last year or the year before, but it had announced it would step up enforcement of what’s known as the “individual mandate” for tax year 2016. That plan was canceled under Trump’s executive order calling on federal agencies to “minimize the burden” of the health law.
Still, those who lacked insurance for more than three consecutive months, or who bought individual insurance and got federal help paying the premiums, need to do a little more work.
Those with no insurance or a lengthy gap may be required to pay what the federal government calls a “shared responsibility payment.” It’s a fine for not having coverage, on the theory that even those without insurance will eventually use the health care system at a cost they can’t afford and someone else will have to pay that bill.
Many people without insurance, however, qualify for one of several dozen “exemptions” from the fine. Nearly 13 million tax filers claimed an exemption for 2015 taxes, according to the IRS. The most common were for people whose income was so low (less than $10,350 for an individual) that they are not required to file a tax return, Americans who lived abroad for most of the year and people for whom the cheapest available insurance was still unaffordable (costing more than 8 percent of their household income).
The fine for 2016 taxes is the greater of $695 per adult or 2.5 percent of household income. Fines for uncovered children are half the amount for adults. Fines are pro-rated by the number of months you or a family member was uninsured.
The maximum fine is $2,676; that is the national average cost of a “bronze” level insurance plan available on the health exchanges. But most people do not pay anywhere near that much. Last year, said the IRS, an estimated 6.5 million tax filers paid a fine that averaged $470.
If you bought your own insurance from the federal or a state health insurance exchange and you got a federal tax credit to help pay for that coverage, you also have to take a step before you can file your taxes.
People who got those tax credits must fill out a form that “reconciles” the amount of subsidies they received based on their income estimates with the amount they were entitled to according to their actual income reported to the IRS.
In 2016, 5.3 million taxpayers had to pay the government because they got too much in tax credits, compared with 2.4 million who got additional money back. But among those who underestimated their incomes and had to pay back some of those tax credits, 62 percent still received a net refund on their taxes.
Humor May Be Antidote For Pain Of Death For Patients, Survivors
Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.
But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”
That’s when Mom and daughter burst into laughter that attracted every eye in the store.
For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”
Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.
On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.
Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.
As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”
Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.
“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”
But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.
Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”
A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”
Berk insists humor at that stressful moment offered a critical “release valve.”
Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”
But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.
Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.
“Why would you want that?” inquired a confused Klein.
“So I can look down at my husband and see if there’s any hanky-panky going on.”
Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.
She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.
But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.
Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.
With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.
Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.
“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”
That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.
Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.
“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”
About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.
That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.
For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.
Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.
She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.
The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.
They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”
The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.
Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.
Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.
When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.
So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.
Asking For Help
Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.
The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.
When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.
There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.
In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.
A Push For Awareness
Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.
Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.
Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.
“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.
Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.
“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”
As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.
Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.
In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.
Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.
Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.
“This is why it is so important to invest in the education of these communities,” Mizis said.
Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.
“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”
Since he watched his mother drop dead, Richard Bridgman’s fear of death has left him emotionally paralyzed.
It was right around Thanksgiving — nearly 45 years ago — and Bridgman was sleeping overnight on his mom’s living room couch.
“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be okay. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”
Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Ill., area, he has spent most of his adult years trying to cope with — if not overcome — his immense fear of death.
“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”
Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where time is commonly measured in 140 characters and 6-second sound bites, life would appear to be dissected into so many bite-sized morsels that discussion of death doesn’t even seem to fit into the equation.
Kelvin Chin (Courtesy of Kelvin Chin)
“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”
But wait. What if death isn’t actually unhappy? What if it simply — is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to emotionally deal with death. That question was posed to him by Chin, who he discovered via a Google search. Several supportive phone consultations with Chin — combined with a simple meditation process that Chin teaches — have helped to keep Bridgman’s fears under control.
“I spent so much money on psychiatrists and psychotherapists — none of them did any good,” says Bridgman. But Chin steered Bridgman towards meditation. “Meditation is better than medicine,” Bridgman said.
Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.
“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”
“Very few people die screaming. They just go to sleep.”
But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was two years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.
Donna Authers (Courtesy of Donna Authers)
It was Authers’ grandmother — while dying from cancer — who taught Authers the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days. But her grandmother could sense her granddaughter’s terrible fear.
That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve. “I was no longer afraid of death and dying,” recalls Authers.
Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.
Increasingly, however, Chin has found that Millennials — more than any other demographic — fear death the most.
“It’s the downside of social media,” said Chin. “The bombardment and speed of communication leads to an overload that can trigger a fear of death.”
Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”
In times of political upheaval— particularly when people are reminded of their mortality — the fear of death increases even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.
“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”
Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.
A terminally-ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.
“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”
The number of California seniors who land in emergency rooms after falling has risen sharply in recent years, as their population grows and they live longer with more chronic illnesses often requiring an array of medications.
Some of the rise appears to be explained by the estimated 21 percent growth in the state’s senior population, from about 4.28 million in 2010 to 5.19 million in 2015, according to the California Department of Finance.
The ranks of people 85 and older, who account for one-third of all fall-related ER visits, are also swelling: That population grew by 19 percent in the same five-year period, according to the department’s data.
In addition to their growing numbers, older adults nationwide have multiple chronic diseases and are taking numerous medications, both of which can contribute to falling, according to the CDC. And elderly adults may have cognitive decline, poor balance, physical weakness, and deteriorated vision.
“These kinds of things really affect the oldest of the old,” said Jon Pynoos, professor of gerontology, policy and planning at the USC Leonard Davis School of Gerontology. “They are more prone to have complicated medical conditions.”
Nationwide, about 2.8 million older adults are treated in emergency departments each year for injuries caused by falling, and more than 800,000 are hospitalized because of them, according to the U.S. Centers for Disease Control and Prevention.
Medical costs associated with falls are more than $31 billion each year, with hospital care accounting for about two-thirds of those expenses, according to the CDC. About one-fifth of falls cause serious injuries.
Fall-related injuries are particularly worrisome because they can lead to other problems, including immobility and even premature death, said Ted Chan, chairman of the Department of Emergency Medicine at UC San Diego and a professor at the medical school there. Hip fractures, in particular, can lead to severe health problems, including blood clots in the legs and lungs, pneumonia and loss of muscle mass, which can increase the risk of falling again.
“It is often when the real decline really starts to happen,” Chan said. “They may never quite fully recover.”
He said elderly patients who have serious falls need to be seen in the emergency room because they may have significant injuries requiring immediate medical attention. Doctors also need to determine why they fell.
“It may not be that they just tripped over something,” Chan said. “It could be related to their heart or blood pressure.”
The number of visits to California emergency rooms by people over 65 who fell surged 38 percent from 167,785 in 2010 to 232,146 in 2015, according to data from the state’s Office of Statewide Health Planning and Development.
Certain groups are more likely to end up in the emergency room after a fall, including homeless people, nursing home residents, people who live alone, and those of very advanced age, said Pynoos, the USC gerontology professor.
Joanne Lynch, 86, fell about two years ago while she was outside at night watering the garden at her Sacramento home. She was living alone at the time.
“I went face first into the flower bed,” said Lynch, a retired hospital clerk.
A neighbor heard her yell and called 911. At the emergency room, doctors told her she had broken her wrist. Going to the emergency room assured her she didn’t have an even more serious injury, she said.
“You can have a lot of things wrong with you internally that you don’t even know,” she said. “Peace of mind to an older person is worth more than anything else.”
Some counties saw sharper increases than others in the number of fall-related emergency room visits by seniors. From 2010 to 2015, the number rose 54 percent in San Bernardino County, 47 percent in San Diego County and 31 percent in Los Angeles County.
The problem could worsen, as 10,000 baby boomers turn 65 every day in the United States.
The CDC urges older adults to talk to their doctors about whether their medications could make them dizzy or sleepy. The agency also recommends seniors build up their strength through exercise or physical therapy, get their eyes checked regularly and ensure their homes are free of hazards that could trip them. The agency also encourages medical providers to screen patients for the risk of falling.
When Dan Bawden teaches contractors and builders about aging-in-place, he has them get into a wheelchair. See what it’s like to try to do things from this perspective, he tells them.
That’s when previously unappreciated obstacles snap into focus.
Bathroom doorways are too narrow to get through. Hallways don’t allow enough room to turn around. Light switches are too high and electrical outlets too low to reach easily. Cabinets beneath a kitchen sink prevent someone from rolling up close and doing the dishes.
It’s an “aha moment” for most of his students, who’ve never actually experienced these kinds of limitations or realized so keenly how home design can interfere with — or promote — an individual’s functioning.
That number is set to swell with the aging population: Twenty years from now, 17 million U.S. households will include at least one mobility-challenged older adult, according to a December report from Harvard University’s Joint Center for Housing Studies.
How well has the housing industry accommodated this population?
“Very poorly,” said Bawden, chair of the remodelers division at the National Association of Home Builders and president of Legal Eagle Contractors in Bellaire, Texas. “I give them a D.”
Researchers at the Harvard center found that fewer than 10 percent of seniors live in homes or apartments outfitted with basic features that enhance accessibility — notably, entrances without steps, extra-wide hallways or doors needed for people with wheelchairs or walkers.
Even less common are features that promote “usability” — carrying out the activities of daily life with a measure of ease and independence.
Laws that guarantee accessibility for people with disabilities go only so far. The Americans with Disability Act applies only to public buildings. And while the Fair Housing Act covers apartments and condominiums built after March 1991, its requirements aren’t comprehensive and enforcement is spotty.
We asked several experts to describe some common issues mobility-challenged seniors encounter at home, and how they can be addressed. The list below is what they suggested may need attention and has suggested alterations, but is not comprehensive.
Getting inside. A ramp will be needed for homes with steps leading up to the front or back door when someone uses a wheelchair, either permanently or temporarily. The estimated price for a five-to-six foot portable nonslip version: $500 to $600.
You’ll want to take out the weather strip at the bottom of the front door and replace it with an automatic door bottom. “You want the threshold to be as flat as the floor is,” Bawden said. Consider installing an electronic lock that prevents the need to lean in and insert a key.
Doors. Getting through doorways easily is a problem for people who use walkers or wheelchairs. They should be 34 to 36 inches wide to allow easy access, but almost never are.
Widening a doorway structurally is expensive, with an estimated cost of about $2,500. A reasonable alternative: swing-free hinges, which wrap around the door trim and add about 2 inches of clearance to a door.
Clearance. Ideally, people using wheelchairs need a five-foot-wide path in which to move and turn around, Bawden said. Often that requires getting rid of furniture in the living room, dining room and bedroom.
Another rule of thumb: People in wheelchairs have a reach of 24 to 48 inches. That means they won’t be able to reach items in cabinets above kitchen counters or bathroom sinks.
Also, light switches on walls will need to be placed no more than 48 inches from the floor and electrical outlets raised to 18 inches from their usual 14 inch height.
Older eyes need more light and distinct contrasts to see well. A single light fixture hanging from the center of the dining room or kitchen probably won’t offer enough illumination.
You’ll want to distribute lighting throughout each room and consider repainting walls so their colors contrast sharply with your floor materials.
“If someone can afford it, I put in recessed LED lights in all four corners of the bedroom and the living room and install closet rods with LED lights on them,” Bawden said. LED lights don’t need to be changed as often as regular bulbs.
Kitchen. Mark Lichter, director of the architecture program for Paralyzed Veterans of America, recommends that seniors who use walkers or wheelchairs take time in the kitchen of a unit they’re thinking of moving into and imagine preparing a meal.
Typically, cabinets need to be taken out from under the sink, to allow someone with a wheelchair to get up close, Lichter said. The same is true for the stovetop: The area underneath needs to be opened and control panels need to be in front.
Refrigerators with side-by-side doors are preferable to those with freezer areas on the bottom or on top. Slide out full-extension drawers maximize storage space, as can lazy Susans in the corner of bottom cabinets.
Laundry. Get a side-by-side front-loading washer and drier to allow for easy access, instead of machines that are stacked on top of each other.
Bathroom. When Jon Pynoos’ frail father-in-law, Harry, who was in his 80s, came to live in a small cottage in back of his house, Pynoos put in a curbless shower with grab bars and a shower seat and a handheld shower head that slid up and down on a pole.
Even a relatively small lip at the edge of the shower can be a fall risk for someone whose balance or movement is compromised.
Also, Pynoos, a professor of gerontology, public policy and urban planning at the University of Southern California, installed nonslip floor tile and grab bars around a “comfort height” toilet.
Cabinets under the sink will need to be removed, and storage space for toiletries moved lower. A moveable toilet paper holder will be better than a wall-based unit for someone with arthritis who has trouble extending an arm sideways.
“It really wouldn’t take much effort or expense to design homes and apartments appropriately in the first place, to make aging-in-place possible,” Pynoos said. Although “this still doesn’t happen very often,” he noted that awareness of what’s required is growing and well-designed, affordable products are becoming more widely available.
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
In the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.
Shavelson, director of a Berkeley, Calif. consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers refused to participate in the state’s End of Life Options Act.
“Those are the ones who could find me,” said Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”
Across California — and in the five other states where medical aid-in-dying is now allowed — access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.
Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.
In Colorado, where the nation’s latest aid-in-dying law took effect last month, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.
Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers willing or able to dispense the lethal drugs for 100 miles, said officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.
In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.“That’s why we still have active access campaigns in Oregon, even after 20 years,” said Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”
“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”
The stance was also devastating for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.
“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”
“I thought it was going to be very simple and they would help us,” said Linda Fitzgerald. “Everything came up empty down here.”
Opponents of aid-in-dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.
“People consider it a breaking of professional integrity,” said Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.
But the decisions can effectively isolate entire regions from access to laws overwhelmingly approved by voters, advocates said.
In California’s Coachella Valley, an area that includes Palm Springs, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid-in-dying, officials said.
“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.
Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.
“All we have done is say it can’t be done in our facility,” he added.
In practice, however, the decision has had a chilling effect, said Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.
Patients eligible for aid-in-dying laws include terminally-ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify they meet the qualifications.“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”
Many individual doctors in California remain reluctant to participate because of misunderstandings about what the law requires, said Dr. Jay W. Lee, past president of the California Academy of Family Physicians.
“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee said, adding that doctors have a moral obligation to address end-of-life concerns.
There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.
“They don’t want to be known as the ‘death docs,’” said Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.
Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.
At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.
Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.
Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs and on Aug. 17, ate a half-cup of applesauce mixed with Seconal, a powerful sedative.
“Within 20 seconds, she fell asleep,” Fitzgerald recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”
End-of-life counseling sessions, once decried by some conservative Republicans as “death panels,” gained steam among Medicare patients in 2016, the first year doctors could charge the federal program for the service.
Nearly 14,000 providers billed almost $35 million — including nearly $16 million paid by Medicare — for advance care planning conversations for about 223,000 patients from January through June, according to data released this week by the Centers for Medicare & Medicaid Services. Full-year figures won’t be available until July, but use appears to be higher than anticipated.
Controversy is threatening to reemerge in Congress over the funding, which pays doctors to counsel some 57 million Medicare patients on end-of-life treatment preferences. Rep. Steve King (R-Iowa) introduced a bill last month, the Protecting Life Until Natural Death Act, which would revoke Medicare reimbursement for the sessions, which he called a “yet another life-devaluing policy.”
“Allowing the federal government to marry its need to save dollars with the promotion of end-of-life counseling is not in the interest of millions of Americans who were promised life-sustaining care in their older years,” King said on Jan. 11.
While the fate of King’s bill is highly uncertain — the recently proposed measure hasn’t seen congressional action — it underscores deep feelings among conservatives who have long opposed such counseling and may seek to remove it from Medicare should Republicans attempt to make other changes to the entitlement program.
Proponents of advance care planning, however, cheered evidence of the program’s early use as a sign of growing interest in late-stage life planning.
“It’s great to hear that almost a quarter-million people had an advance care planning conversation in the first six months of 2016,” said Paul Malley, president of Aging With Dignity, a Florida nonprofit. “I do think the billing makes a difference. I think it puts it on the radar of more physicians.”
Use of the counseling sessions is on track to outpace an estimate by the American Medical Association, which projected that about 300,000 patients would receive the service in the first year, according to the group, which backed the rule.
Providers in California, New York and Florida led use of the policy that pays about $86 a session for the first 30-minute office-based visit and about $75 per visit for any additional sessions.
The rule requires no specific diagnosis and sets no guidelines for the end-of-life discussions. Conversations center on medical directives and treatment preferences, including hospice enrollment and the desire for care if patients lose the ability to make their own decisions.
The new reimbursement led Dr. Peter Sutherland, a family medicine physician in Morristown, Tenn., to schedule more end-of-life conversations with patients last year.
“They were very few and far between before,” he said. “They were usually hospice-specific.”
Now, he said, he has time to have thorough discussions with patients, including a 60-year-old woman whose recent complaints of back and shoulder pain turned out to be cancer that had metastasized to her lungs. In early January, he talked with an 84-year-old woman with Stage IV breast cancer.
“She didn’t understand what a living will was,” Sutherland said. “We went through all that. I had her daughter with her and we went through it all.”
The conversations may occur during annual wellness exams, in separate office visits or in hospitals. Nurse practitioners and physicians’ assistants may also seek payment for end-of-life talks.
The idea of letting Medicare reimburse such conversations was first introduced in 2009 during debate on the Affordable Care Act. The issue quickly fueled allegations by some conservative politicians, such as former Republican vice presidential candidate Sarah Palin and presidential candidate John McCain, that they would lead to “death panels” that could disrupt care for elderly and disabled patients.
The idea was dropped “as a direct result of public outcry,” King said in a statement.
“The worldview behind the policy has not changed since then, and government control over this intimate choice is still intolerable to those who respect the dignity of human life,” he said.
But in 2015, CMS officials quietly issued the new rule allowing Medicare reimbursement as a way to improve patients’ ability to make decisions about their care.
End-of-life conversations have occurred in the past but not as often as they should, Malley said. Many doctors aren’t trained to have such discussions and find them difficult to initiate.
“For a lot of health providers, we hear the concern that this is not why patients come to us,” Malley said. “They come to us looking to be cured, for hope. And it’s sensitive to talk about what happens if we can’t cure you.”
A 2014 report by the Institute of Medicine, a panel of medical experts, concluded that Americans need more help navigating end-of-life decisions. A 2015 Kaiser Family Foundation poll found that 89 percent of people surveyed said health care providers should discuss such issues with patients, but only 17 percent had had those talks themselves. (KHN is an editorially independent program of the foundation.)
Use of the new rule was limited in the first six months of 2016. In California, which recorded the highest Medicare payments, about 1,300 providers provided nearly 29,000 services to about 24,000 patients at an overall cost of about $4.4 million — including about $1.9 million paid by Medicare.
The data likely reflect early adopters who were already having the talks and quickly integrated the new billing codes into their practices, said Dr. Ravi Parikh, an internal medicine resident at Brigham and Women’s Hospital in Boston, who has written about advance care planning. Many others still aren’t aware, he said.
Data from Athenahealth, a medical billing management service, found that only about 17 percent of 34,000 primary care providers at 2,000 practices billed for advance care planning in all of 2016.
The numbers will likely grow, said Malley, who noted that requests from doctors for advance care planning information tripled during the past year.
To counter objections, providers need to ensure that informed choice is at the heart of the newly reimbursed discussions.
“If advance care planning is only about saying no to care, then it should be revoked,” Malley said. “If it truly is about finding out patient preferences on their own turf, it’s a good thing.”
Imagine seniors walking around with stylish ear devices that amplify and clarify sound and connect wirelessly to smart phones, tablets, televisions and digital assistants such as Amazon’s Alexa or Apple’s Siri.
That day is coming, sooner than you may think.
Technology is already moving in this direction, and consumer marketers such as Samsung, Bose Corp., and Panasonic Corp. are reportedly readying new products of this kind.
They’ll be sold over the counter, to customers who will test their own hearing with cell phone apps or online programs and adjust sound parameters themselves.
The devices “will be widely used by older people,” just as earbuds are used by younger people today, predicted Richard Einhorn, a well-known composer who serves on the board of the Hearing Loss Association of America, a consumer group.
Recognizing market forces, the Food and Drug Administration is mobilizing. In December, Dr. Robert Califf, the FDA’s commissioner, said the agency planned to take “steps necessary to propose to modify our regulations to create a category of [over-the-counter] hearing aids.”
Last week, the Federal Trade Commission announced plans for a major meeting on hearing health care in April. That agency played an important role in ensuring that consumers get copies of eyeglass prescriptions so they could shop around for good deals. For the most part, that doesn’t happen with hearing aids today.
Whether agency priorities will change under the new Trump administration isn’t certain. But technology is developing rapidly under any circumstances.
Older adults with mild to moderate hearing loss, including aging baby boomers, are expected to be a prime market for a new generation of products marrying hearing aid and consumer electronics hearable technologies.
More than 40 percent of people over the age of 60 have some degree of hearing loss, mostly mild to moderate; that rises to 80 percent of people older than 80.
Yet only 20 percent of those with some degree of impairment use hearing aids because of their high cost (an average $4,700 per pair), the lack of insurance coverage (traditional Medicare doesn’t pay for hearing aids), stigma, denial and difficulty navigating the hearing health system.
Both organizations cite a growing body of research linked hearing loss to cognitive decline, depression, the onset of dementia, falls, poor physical functioning and social isolation. The longer people delay seeking help, research suggests, the more at risk they become.
Several recent developments are of note as consumer electronics companies, hearing aid manufacturers, audiologists, physicians, consumer advocates and regulators prepare for a surge of new hearing devices and changes in the hearing health care system:
For 40 years, the FDA has required that adults be examined by a doctor before purchasing a hearing aid or sign a waiver noting that they didn’t want to take this step. Last month, the agency eliminated that requirement for people over the age of 18.
The National Academies of Sciences’ expert panel on hearing health had noted that the rule “provides no clinically meaningful benefit” and could discourage people from seeking care. Instead of seeing a physician, adults signed the waiver 60 to 95 percent of the time.
Still, limits on access to hearing aids exist: All states restrict distribution of these devices to certified audiologists, physicians and device specialists. And some states still require medical evaluations.
Sens. Charles Grassley, R-Iowa, and Elizabeth Warren, D-Mass., said last month that they would soon introduce new legislation endorsing over-the-counter hearing aids, sold without those restrictions.
The goal is to increase competition, lower costs and expand access to devices for people with mild to moderate hearing loss, Grassley said in a prepared statement.
Currently, six companies control nearly 98 percent of the hearing aid market in the U.S., contributing to high prices. Nearly two-thirds of people with severe hearing loss — many of them elderly — report being unable to afford the devices. The cost is generally “bundled” with professional fees for evaluation, fitting and follow-up care.
Organizations representing hearing professionals are deeply divided.
The American Speech-Language-Hearing Association, an organization representing audiologists and speech-language pathologists, doesn’t believe consumers can adequately self-diagnose hearing problems and opposes over-the-counter devices.
The American Academy of Audiology, which represents more than 12,000 audiologists, believes professionals should evaluate hearing loss but is taking a “wait and see stance” until the FDA proposes a regulatory framework, its president, Ian Windmill, said.
Another audiologist group, the Academy of Doctors of Audiology, believes the benefits of expanded access to hearing devices outweigh the risks and supports over-the-counter products.
The senators plan to introduce their legislation, which asks the FDA to issue regulations ensuring the safety and effectiveness of these devices, in this new congressional session.
“Administrations shift and legal challenges occur,” Grassley said in a statement, adding that getting the law on the books would ensure needed “certainty going forward.”
One area of considerable confusion is the distinction between hearing aids and personal sound amplification products, known as PSAPs.
This is a wide category of products, ranging from cheap devices that help amplify sound to sophisticated devices that resemble hearing aids in all but their name. In some cases, companies are marketing the exact same device as a hearing aid and a PSAP, sold at different prices.
In 2009, the FDA drew a distinction between PSAPs and hearing aids based on their “intended use.” PSAPs were considered unregulated consumer electronics products for people with normal hearing who wanted to hear more sharply — for instance, during bird watching. Hearing aids were regulated and considered medical devices meant for people with hearing impairment.
But technological advances have brought the two categories closer. And it’s well understood that people with hearing loss are using PSAPs as a cheaper alternative to hearing aids.
Going forward, Stephanie Czuhajewski, executive director of the Academy of Doctors of Audiology, believes higher-end PSAPs will become over-the-counter hearing aids.
In the meantime, the Consumer Technology Association has prepared standards for PSAPs meant to make it easier for consumers to understand what they’re buying. The standards, which address issues such as maximum output, peak output and sound distortion, and are under review at the American National Standards Institute and could be published as early as next month.
“The intent is to provide a ‘Good Housekeeping Seal of Approval’ for PSAPs,” said Mead Killion, an audiologist who founded Etymotic Research, Inc., an Illinois company that manufactures hearing devices. Currently, there is no easy, standardized way to compare these devices.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
Debbie Case held an insulated bag with two packaged meals — a sandwich wrap and fruit for lunch, a burrito and cauliflower for dinner.
“You’re going to eat well today,” Case told 75-year-old Dave Kelly as she handed him the meals. Kelly lost his sight about two years ago and reluctantly gave up cooking.
After putting the food away, Kelly chatted with Case about his experience as a folk musician. As they talked in his living room, Case, CEO of San Diego County’s Meals on Wheels program, glanced around for hazards that could cause Kelly to fall.
Kelly said the homemade meals keep him from eating too much frozen food or take-out. But more than that, he said he appreciates someone coming by to check on him every day.
“Anything could happen,” Kelly said, adding that he worries about falling. “I wouldn’t want to lay around and suffer for days.”
Meals on Wheels is undergoing a dramatic overhaul as government and philanthropic funding fails to keep pace with a rapidly growing elderly population. The increased demand has resulted in lengthy waitlists and a need to find other sources of funding. And at the same time, for-profit companies such as Mom’s Meals are creating more competition.
Meals on Wheels, which has served seniors for more than 60 years through a network of independent nonprofits, is trying to formalize the health and safety checks its volunteers already conduct during their daily home visits to seniors. Through an ongoing campaign dubbed “More Than a Meal,” the organization hopes to demonstrate that it can play a critical role in the health care system.
“We know we are keeping people out of the hospital,” Case said. “Seven dollars a day is cheaper than $1,300 a day.”
Meals on Wheels America and several of the local programs around the country have launched partnerships with insurers, hospitals and health systems. By reporting to providers any physical or mental changes they observe, volunteers can help improve seniors’ health and reduce unnecessary emergency room visits and nursing home placements, said Ellie Hollander, CEO of Meals on Wheels America.
“It’s a small investment for a big payoff,” Hollander said.
Studies conducted by Brown University researchers have shown that meal deliveries can help elderly people stay out of nursing homes, reduce falls and save states money.
Kali Thomas, an assistant professor at Brown University School of Public Health, estimated that if all states increased the number of older people receiving the meals by 1 percent, they would save more than $100 million. Research also has shown that the daily meal deliveries helped seniors’ mental health and eased their fears of being institutionalized.
Meals on Wheels can be the “eyes and ears” for health providers, especially in the case of seniors who are ill and don’t have family nearby, said Thomas, who authored several studies of the organization.
Meals on Wheels has “the potential to capitalize on that,” she said. “They realize they are doing something that is unique and needed in our current health care space.”
Visitors from Meals on Wheels are the only people some seniors see all day. The volunteers get to know them and can quickly recognize problems.
“You notice if they are losing weight, if their house is a mess, if they are talking awkwardly,” said Chris Baca, executive director of Meals on Wheels West in Santa Monica. “Our wellness check is critical and almost as important as the food itself.”
The meal delivery and in-home visits also reduce isolation among residents, said Zia Agha, chief medical officer for West Health, which has organizations that provide and study senior services. Agha said that while numerous high-tech gadgets are available to keep an eye on seniors, they can’t replace a volunteer’s human touch.
Meals on Wheels, Brown University and the West Health Institute recently launched a two-year project in six states to formally build health and safety screenings into daily meal deliveries. The goal is to improve seniors’ health and catch problems early.
“The fact that you don’t have resources to feed yourself or you are so frail you can’t cook is a very big marker that you are going to have high health care utilization,” Agha said. “There is value in targeting these clients through this meal delivery service.”
That’s also what Meals on Wheels America is planning to do in a new partnership with Johns Hopkins Bayview Medical Center and Meals on Wheels of Central Maryland. The project aims to keep seniors at home and reduce their need for costly health services after hospitalization. The idea is to have trained volunteers report red flags and ensure, for example, that patients with congestive heart failure are weighing themselves regularly and eating properly.
Dan Hale, who is leading the project from the hospital, said the meal delivery volunteers can help track patients’ health even months after discharge and keep them from returning to the hospital. “It makes sense financially,” he said.
Funding for Meals on Wheels organizations primarily comes from the federal government, state organizations and donors.
The partnerships with health care organizations and insurers mean additional money for the Los Angeles County programs, said Baca, who heads a countywide association of local Meals on Wheels organizations.
On a recent day in Santa Monica, volunteers showed up just after 10 a.m., loaded up their cars with meals and headed out to deliver them. One of the clients, 58-year old Patrick Ward, receives daily meals at his apartment in Venice.
Ward, who has osteoarthritis and knee problems, said he has fallen numerous times and also had a heart attack this year. He said he can take care of himself pretty well, but his lack of mobility makes cooking difficult.
“It takes one thing out of the day that I don’t have to worry about,” Ward said. “I know they are going to be here every day.”
One in three women with breast cancer detected by a mammogram is treated unnecessarily, because screening tests found tumors that are so slow-growing that they’re essentially harmless, according to a Danish study published Monday in Annals of Internal Medicine, which has renewed debate over the value of early detection.
The study raises the uncomfortable possibility that some women who believe their lives were saved by mammograms were actually harmed by cancer screenings that led to surgery, radiation and even chemotherapy that they didn’t need, said Dr. Otis Brawley, chief medical officer of the American Cancer Society, who wrote an accompanying editorial but was not involved in the study.
Researchers increasingly recognize that not all breast cancers pose the same risk, even if they look the same under a microscope, Brawley said. While some early tumors turn into deadly monsters, others stop growing or even shrink. But assuming that all small breast lesions have the potential to turn deadly is akin to “racial profiling,” Brawley wrote in his editorial.
“By treating all the cancers that we see, we are clearly saving some lives,” Brawley said in an interview. “But we’re also ‘curing’ some women who don’t need to be cured.”
Although experts such as Brawley have long discussed the risks posed by “overdiagnosis,” relatively few women who undergo cancer screenings are even aware of the debate.
The American College of Radiology, which strongly supports breast cancer screenings, acknowledges that mammograms lead some women to be treated unnecessarily, but said the problem is much less common than the new study suggests. Another study from Denmark – whose national health program keeps detailed records – estimated the overdiagnosis rates at only 2.3 percent.
“The amount of overdiagnosis really is small,” said Dr. Debra Monticciolo, chair of the American College of Radiology’s Commission on Breast Imaging. “Articles like this aren’t very helpful,” she said, because they leave women confused about how to be screened for breast cancer.
Yet treating women for cancer unnecessarily can endanger their health, said Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. Radiation can damage the heart or even cause new cancers. Visco notes that breast cancer activist Carolina Hinestrosa, a vice president at the coalition, died at age 50 from soft-tissue sarcoma, a tumor caused by radiation used to treat an early breast cancer.
Women should understand these risks, Visco said. Instead, women often hear only about mammograms’ benefits.
“Women have been inundated with the early detection message for decades,” Visco said.
The risks of overdiagnosis and false positives, which can lead women with benign growths to undergo biopsies and other follow-up tests, have caused some experts to reevaluate breast cancer screenings. Although mammograms don’t find all tumors, they reduce the risk of dying from breast cancer by 25 percent to 31 percent for women ages 40 to 69, according to the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services.
Medical groups now offer differing advice on mammograms:
The U.S. Preventive Services Task Force, an independent expert panel that advises the federal government on health, provoked a firestorm of criticism in 2009 when it bucked that advice, recommending that women get mammograms every other year beginning at age 50. The group noted that breast cancer risk rises with age, so mammograms are more likely to discover cancer – as opposed to benign growths – after age 50.
The American Cancer Society also scaled back its screening advice in 2015, recommending women get annual mammograms from 45 to 54, followed by screenings every other year after that.
In the new study, Danish researchers estimated the rate of overdiagnosis by comparing the number of early-stage and advanced breast tumors before and after the country started offering mammograms. If screenings work as intended, the number of small, curable breast tumors should increase, while reducing the number of large cancers by about the same amount.
Although mammograms in Denmark detected a lot more breast cancers, these were mostly small, early-stage tumors, said study coauthor Dr. Karsten Jorgensen, a researcher at the Nordic Cochrane Center in Copenhagen, Denmark. The number of advanced cancers did not fall.
The debate about overdiagnosis illustrates the limits of medical technology, Brawley said.
Although researchers can estimate the statistical rate of overdiagnosis, doctors treating actual patients can’t definitively tell which breast tumors need treatment and which might be safely ignored, Brawley said. So doctors tend to err on the side of caution and treat all breast cancers with surgery and, in many cases, radiation and chemotherapy.
An estimated 253,000 new cases of breast cancer will be diagnosed in U.S. women this year, with nearly 41,000 deaths, according to the American Cancer Society.
An additional 63,000 women will be diagnosed with ductal carcinoma in situ, also known as DCIS, which has some, but not all, of the typical traits of cancer. Although DCIS cells have changed to appear malignant under the microscope, they haven’t invaded surrounding tissue.
The American Cancer Society defines DCIS as the earliest stage of breast cancer, and women with the condition typically undergo the same treatment given to women with early invasive cancers. Although DCIS isn’t life-threatening, doctors recommend treating it to prevent it from becoming invasive.
Other experts note that DCIS carries such low risk that it should be considered merely a risk factor for cancer. Researchers are conducting studies to measure whether it’s safe to scale back treatment of DCIS.
Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.
The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.
They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.
Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.
The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.
While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.
“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).
Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.
Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.
Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:
In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.
Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.
“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.
While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.
For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.
Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.
A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.
NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.
For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.
Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.
“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.
Plans Of Care
Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.
“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.
In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.
Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.
The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.
“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”
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Phyllis Krantzman knows what she should do, but like many of her peers, the 71-year-old doesn’t know how to approach a casual acquaintance to ask who will take care of her when she needs it most.
Krantzman, of Austin, Texas, is among a growing number of seniors who find themselves alone just when aging and end-of-life care becomes real.
Unmarried, with no children, her younger sister, by seven years, died in 2014. Krantzman’s social network is limited to a handful of work colleagues and a few acquaintances.
“I’m very fearful of when I reach that place in my life when I really need help and maybe can’t take care of myself anymore,” she said. “I have nobody to turn to.”
Krantzman represents a universe that’s come to be known among geriatric specialists as “elder orphans” — seniors with no relatives to help them deal with physical and mental health challenges. Their rising numbers prompted the American Geriatrics Society this week to unveil guidelines for a segment of these older adults who can no longer make their own medical decisions and have no designated surrogates. The nonprofit dubbed them “unbefriended” and called for a national effort to help prevent a surge among incapacitated seniors who don’t have a decision maker and face a health crisis.
Single seniors have always existed, but demographic and social changes have slowly transformed aging America. In 1900, average life expectancy was 47. Now, the combination of increased longevity, the large and graying baby boom generation, the decline in marriage, the rise in divorce, increased childlessness and family mobility has upended the traditional caregiving support system.
Among the indicators:
— A Centers for Disease Control and Prevention report this year shows the number of Americans older than 100 years old increased almost 44 percent between 2000 to 2014.
— Twenty-two percent of people over age 65 are — or risk becoming — elder orphans, according to a 2015 study by New York geriatrician Maria Torroella Carney.
— A U.S. Census report from 2014 projected by 2050 the 65 and older population to be 83.7 million — almost double the 2012 estimate of 43.1 million.
— The nonprofit Population Reference Bureau in Washington, D.C., reported earlier this year that family provides more than 95 percent of informal care for older adults who aren’t in nursing homes.
“Americans are spending less time than ever in the married state,” said Susan Brown of the National Center for Family & Marriage Research at Bowling Green State University in Ohio, which “raises questions about who’s going to care for these people as they age and experience health declines.”
Reference Bureau demographer Mark Mather said the combination of aging boomers and family dislocation is creating “a potential caregiving crisis or at least major challenges down the road.”
The oldest boomers are now 70. With more on the horizon, the impact of smaller family size will become more pronounced: Baby boomers had fewer children than previous generations and significant numbers are childless, said demographer Jonathan Vespa, of the U.S. Census.
“As people have fewer children, there are fewer people in that next generation to help take care of that older generation,” he said.
New 2015 U.S. Census data also reflects more elders who live alone — 42.8 percent of those 65 and older. Yet new twists have emerged, such as cohousing, in which people live independently in housing clusters with a common building for meals and socializing. Such thinking, said gerontologist Jan Mutchler, of the University of Massachusetts Gerontology Institute in Boston, suggests a “shift [in] the way people are thinking about who can I rely on and who’s going to be there for me.”
Katie McGrail, 77, spent much of her working life in San Antonio or New York, finally retiring to Texas five years ago. McGrail and her friends daydream about “having these little houses around the spoke of a wheel and at center have a nurse and a good cook.”
Mary Gleason, 85, is an unmarried only child with no children. She’s lived on St. Thomas in the Virgin Islands for 51 years, where she developed a close group of “extremely supportive friends.” Most, she said, are five to 15 years younger, which proved important in January when Gleason had open heart surgery.
“That was it,” she said, noting she never talked about future care. “Now that I’m feeling so much better, I try to keep away from discussing that kind of stuff.”
It’s a mindset Mutchler knows well.
“People in general avoid planning for unpleasant things,” she said. “A lot of people don’t have wills or think about long-term care or what they would do if they needed it.”
Timothy Farrell, a physician and associate professor at the University of Utah School of Medicine in Salt Lake City who worked on the new policies, said he would “regularly encounter patients with no clear surrogate decision maker.”
The guidelines include “identifying ‘non-traditional’ surrogates — such as close friends, neighbors, or others who know a person well.”
Boosting social ties among elders is part of a national campaign launched last week by the AARP Foundation and the National Association of Area Agencies on Aging, a nonprofit. The aim is to combat loneliness.
Krantzman says insomnia, which has plagued her for decades, has deepened her isolation.
“I had to give up having close friends and that is one of the reasons why I find myself so alone,” she said.
Although she works part-time and lives in a government complex for low-income seniors, Krantzman said the computer she bought at age 62 has expanded her reach to connect with others.
“The computer is so important to me because I have so few people in my life,” she said. “Having the computer thoroughly altered my entire life.”
Five years ago, Dr. Ira Kirschenbaum, an orthopedic surgeon in the Bronx who replaces more than 200 knees each year, would have considered it crazy to send a patient home the same day as a knee replacement operation.
And yet there he was this year, as the patient, home after a few hours. A physician friend pierced his skin at 8 a.m. at a Seattle-area surgery center. By lunch, Kirschenbaum was resting at his friend’s home, with no pain and a new knee.
“I’m amazed at how well I’m doing,” Kirschenbaum, 59, said recently in a phone interview, nine weeks after the operation.
What felt to Kirschenbaum like a bold experiment may soon become far more standard. Medicare, which spends several billions of dollars a year on knee replacements for its beneficiaries — generally Americans 65 and over — is contemplating whether it will help pay for knee replacement surgeries outside the hospital, either in free-standing surgery centers or outpatient facilities.
The issue is sowing deep discord in the medical world, and the debate is as much about money as medicine. Some physicians are concerned that moving the surgeries out of hospitals will land vulnerable patients in the emergency room with uncontrolled pain, blood clots or other complications.
But proponents of the change say it can give patients more choice and potentially better care, as well as save Medicare hundreds of millions of dollars. Already, an “overwhelming majority” of commenters said they want to allow the surgeries out of hospitals, according to recent rule-making documents.
The final decision, which could come within a year, would also act as a test of sorts for Donald Trump and his new administration. They will weigh whether to limit government controls, as Trump has often suggested, or to bend to pressure from hospitals and doctors, many of whom oppose the change.
“I think the question will come down to two things,” said David Muhlestein, senior director for research at Leavitt Partners, a leading health consulting firm. “It’s the balance of trying to reduce regulations and let the market function — and the competing interest of vested parties.”
Demand for total knee replacements is growing — 660,000 are performed each year in the United States. That number is likely to jump to two million annually by 2030, making this complex and expensive operation one of surgery’s biggest potential growth markets.
Even if the policy change is made, Medicare would still pay for patients to get traditional inpatient surgery. But with the agency also paying for the bulk of outpatient procedures, there would be a huge shift in money — out of hospitals and into surgery centers. Medicare could save hundreds of millions of dollars if it no longer needed to pay for multiple-day stays at the hospital. Investors at the outpatient centers could profit greatly, as could some surgeons, because doctors often have an ownership stake in the outpatient centers where they operate.
Whether the shift is beneficial for patients remains an open question. Medicare patients tend to spend nearly three days in a hospital, data shows. Forty percent of Medicare patients also spend time in a rehabilitation facility for further recovery. The data, which reflects knee replacement operations from 2014, suggests that Medicare patients are taking advantage of the post-operation support at hospitals and aftercare centers. Given that, it is unclear the percentage of eligible patients who would choose outpatient care.
But improvements in surgery — from new medicines to control bleeding to better pain management techniques — mean that, for some patients, the days of close medical supervision are no longer necessary.
Kirschenbaum, who is in favor of the change, acknowledged that outpatient surgery would be the right move for only a small subset of his Medicare patients — perhaps 10 to 15 percent — who have good caretaking at home and few chronic health issues. But it would not be for the people who are frail, live alone or in a dwelling with stairs, he said. The decision about whether an outpatient surgery should be done instead of an inpatient one tends to be made by the physician and patient.
“We want to make sure patients — when they go home, they’re safe, no question,” said Kirschenbaum, the chairman of orthopedics at Bronx-Lebanon Hospital Center and a founder of SwiftPath, a company that offers technical support to outpatient joint replacement centers.
Perhaps of equal concern to patients are the financial consequences, because even though less care is given, outpatient procedures require higher out-of-pocket costs for patients. Medicare covers inpatient hospital stays, aside from a $1,288 deductible. While Medicare rules stipulate that the outpatient would pay no more than this amount for the procedure itself, he could face additional fees for items like medicines, and Medicare would not cover aftercare at a skilled nursing facility.
The battle lines over outpatient knee replacements began forming in 2012, when Medicare first considered removing the surgeries from its “inpatient only” list of invasive and complicated medical procedures. Many orthopedic doctors and hospitals rose up in protest, calling the proposal “ludicrous” and “dangerous” and prompting Medicare to abandon the idea.
Dr. Charles Moon, who has performed knee replacement surgeries at Cedars-Sinai Medical Center in Los Angeles, fired off a letter at the time saying that knee replacement patients stayed at his hospital for 2.5 days on average, and that that was “considered borderline safe” given the need to monitor patients’ response to clot-busting medications.
Other objectors cited research showing that patients who received knee replacements as outpatients were twice as likely to die shortly afterward, and that even one-day-stay hospital patients were twice as likely to need a follow-up surgery, compared with those who remained inpatients longer.
“While we realize this can be good for some patients, it’s not for all patients and all locations,” said Dr. Thomas C. Barber, the chairman for the American Academy of Orthopaedic Surgeons’ advocacy council.
Yet the proposal has gained renewed momentum, backed aggressively by some surgeons and surgery center investors who say that their accumulating experience justifies the change. In recent months, Medicare has signaled a strong interest in outpatient knee replacements, noting the potential for “overall improved outcomes” as well as the potential savings for the government program.
The final decision is made by Medicare officials in the annual course of proposing changes, seeking public input and announcing a final rule. If Medicare does decide to make a change, it would probably not be put into effect until a year or so later.
In an interview, Thomas Wilson, the chief executive of the for-profit Monterey Peninsula Surgery Centers, an outpatient clinic, said his doctors have replaced knees of hundreds of adults — 59 years old on average, but up to 82 — with low complication rates and sky-high satisfaction rates. He said advances in surgical technique, anesthetics and patient education make it possible.
Presented with such evidence, a panel that recommends hospital outpatient payment policies to Medicare officials unanimously recommended in August that Medicare remove the procedure from the “inpatient only” payment list.
Wilson said that as a first step, doctors should use strict criteria for choosing which patients are good candidates, like a low to moderate body mass index and a healthy heart and lungs.
Patients who meet the criteria are teamed with a friend or family member who works as a coach. The patient and coach attend an educational session before the operation, and the coach is also there to help after.
The patient is typically discharged after 23 hours in the outpatient center, and a home health service or private nurse follows up. Patients also go on to physical therapy.
“Our mix is like our regular mix of patients,” said Wilson, whose center advertises a knee replacement surgery for $17,030. “It’s not what we call unicorns, not 49-year-old marathon runners. These are average folks who need to have a knee or hip replaced and they’re generally not sick.”
But Barber and others worry that moving the procedure outside the hospital could become a norm or an expectation, even though some patients, especially those with complicating conditions like diabetes and heart disease, need the added support of a hospital team. Patient safety could be compromised, they warned.
Kirschenbaum said undergoing surgery has changed the way he approaches patients. Now he can roll up his pant leg, show a scar and tell them: “You can do this, too.”
In the operating room, “with a knife in my hand, nothing has changed,” he said. “But what has changed is how we treat them before and after. The education, support and being available — it’s very important.”
This story has been corrected. An earlier version of this article misstated Medicare’s policy on certain outpatient surgeries. For surgeries that can be done either as an inpatient or an outpatient, outpatients can be charged no more than the inpatient deductible for the procedure itself; the usual 20 percent outpatient copay doesn’t apply.
At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.
The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.
Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.
“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”
Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.
The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.
Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.
“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”
Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.
Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.
“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.
The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.
“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.
Even the worst nursing homes are nearly full because hospitals keep sending patients to them.
But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.
The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.
“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”
But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.
Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.
The Lowest Rating
Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.
But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.
Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.
“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”
Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”
On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.
Bills Of More Than $150,000
In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.
Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.
The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.
A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”
As President Donald Trump and Republicans in Congress devise a plan to replace the 2010 health law, new research suggests a key component of the law helped people with chronic disease get access to health care — though, the paper notes, it still fell short in meeting their medical needs.
Research published Monday in the Annals of Internal Medicine found that the number of chronically ill Americans with insurance increased by about 5 percentage points — around 4 million people — in 2014, the first year the law required Americans to have coverage, set up marketplaces for people to buy coverage and allowed for states to expand eligibility for Medicaid, the federal-state insurance plan for low-income people. If states opted into the Medicaid expansion, people with chronic illnesses such as heart disease, diabetes, depression and asthma were more likely to see those gains.
Still, the study suggests, the law fell short in terms of guaranteeing those people could get medical treatment, see a doctor and afford medications.
The study is the first to examine how the health law affected people with these long-term diseases, which require careful and continuous management, and whose treatment drives a vast majority of the nation’s health care costs. If these people don’t get regular treatment they are especially likely to wind up needing emergency care.
“This homes in on the patients that are most dependent on having coverage and access,” said Danny McCormick, an associate professor at Harvard Medical School and senior author on the study. “Most chronic conditions require ongoing treatment. And if you don’t get it, often it results in more expensive care downstream.”
As the GOP crafts its replacement plan, those findings could indicate what elements of the law are worth keeping, and what needs to be addressed. The Medicaid expansion in particular has come under heightened scrutiny from the GOP. This past weekend, a senior aide to President Donald Trump also said the administration wants to turn controlof the program over to states, which experts say could result in less funding.
The researchers say their findings suggest reversing the Medicaid expansion would pose significant problems for people with long-term illness.
They used data from the Behavioral Risk Factor Surveillance System — an annual survey jointly run by state health departments and the Centers for Disease Control and Prevention — to examine records for more than 600,000 adults with at least one chronic condition. Diseases included coronary artery disease, stroke, asthma, pulmonary disease, diabetes, depression and arthritis. They compared insurance rates in the three years and examined whether people used that insurance to see a doctor.
“There’s a clear difference between what happened for [chronically ill] individuals in states, based on how states implemented Medicaid. The Medicaid expansion was one of the strongest parts of the law,” McCormick said.
If policymakers are serious about using health dollars more efficiently, and getting better health outcomes, he added, the findings support including such an expansion in any new policy platform.
The paper builds on research suggesting people generally were more likely to get insurance if they lived in states that expanded Medicaid. States such as West Virginia, Illinois and Kentucky — which opted into the expansion — saw double-digit gains in coverage of chronically ill people.
“Medicaid expansion is one of the tools you would think of to help people with chronic conditions – and we are seeing more evidence this is the case,” said Benjamin Sommers, an associate professor of health policy and economics at Harvard’s public health school, who was not involved with this study. “The question of whether this informs [the policy] debate — it clearly should. It clearly should be relevant.”
That said, Obamacare was hardly a panacea, the researchers argue. Even after the law’s insurance changes, about 15 percent of people with chronic disease didn’t have coverage. More than one in four didn’t have a check-up in 2014. About 23 percent of people with chronic disease still had to go without doctors’ visits because of factors like cost. And those gaps were more pronounced for blacks and Hispanics. They were more likely on average to remain uninsured even after the health law took effect and to face obstacles in using new health insurance if they had it.
The paper suggests some possible causes: People didn’t understand how to use their insurance, or they had plans that required them to pay out of pocket large copays or deductibles — flat spending fees consumers have to front before coverage kicks in. Many marketplace plans were categorized as “high-deductible plans.”
“You’ve got hypertension or diabetes, and you have a very low income. It’s really hard to take your medications” without coverage and minimal cost-sharing, McCormick said. “Someone who’s insulin dependent who doesn’t get insulin? it’s going to result in an emergency room visit, or a hospital visit. There’s a large potential for downstream complications.”
But those gaps in coverage and access to care probably got smaller in the years following 2014, Sommers suggested. Other research has shown that with time, more people got insurance and learned how to use it.
“This is likely the tip of the iceberg in terms of what the Affordable Care Act was doing,” Sommers said. “It’s useful and part of a larger body of evidence making it clear access to care has improved among a range of populations.”
But, he noted, the findings do emphasize an important issue: The health law by itself did not expand health care to all Americans, or even all Americans with chronic conditions.
“The Affordable Care Act is not a universal coverage law. It’s a huge expansion for coverage but still left 20 to 30 million uninsured,” he said. “Even for those with coverage, some are still experiencing challenges.”
Trump has not yet offered his plan but said universal coverage will be part of his health care plan — although aides have since walked back on that claim. Meanwhile, an analysis this month by the nonpartisan Congressional Budget Office suggested that the repeal plan offered last year by Republicans eventually would increase the uninsured population by as many as 32 million.
California officials have fined health care giant Kaiser Permanente $2.5 million for failing to turn over required data on patient care to the state’s Medicaid program.
The California Department of Health Care Services said this was the first fine imposed against one of its Medicaid managed care plans since at least 2000. The state relies on the data to help set rates, ensure adequate care is available and monitor how taxpayer dollars are being spent in the program, known as Medi-Cal in California.
Jennifer Kent, the department’s director, notified Kaiser of the sanctions in a Jan. 13 letterthat was obtained by California Healthline. The department later posted it online.
“This is the first time the department has sanctioned a health plan in recent history. The amount is significant,” said Sarah Brooks, deputy director of health care delivery systems at the Department of Health Care Services. “We do take it very seriously.”
Kaiser isn’t appealing the sanctions and the health plan said it’s “working toward compliance.” The company said the sanctions were in no way related to the quality of patient care or access to treatment. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Brooks said her agency is in ongoing discussions with Kaiser and additional fines could be imposed depending on the company’s actions and whether Kaiser’s violations put the agency out of compliance with federal rules. That could force the state to repay money to the Centers for Medicare & Medicaid Services, which funds the Medi-Cal program jointly with the state.
Kaiser, the state’s dominant HMO, is among 22 health plans that participate in the Medi-Cal managed care program, which covers about 80 percent of Medi-Cal enrollees in the state.
The Oakland-based company failed to submit data on out-of-network care that Medi-Cal patients received from November 2014 to September 2016, according to the state. Kaiser also didn’t file data on “all physician-administered drugs” from March 2010 to March 2015, records show. That information is about infusions and other drugs given to patients in a doctor’s office or clinic.
The insurer missed a June 30 deadline to comply and a subsequent one Jan. 1, which triggered the current penalties. The fine related to medical claims was $742,500 and the drug data fine was $1.79 million, for a total of $2.5 million.
The reporting lapses are unusual since Kaiser pioneered use of electronic medical records and health data collection. But the company indicated in a statement that being an integrated health system that operates a health plan, its own hospitals and medical groups complicated matters.
Nathaniel Oubre, Kaiser Permanente’s vice president for Medi-Cal, said its systems and technology — including electronic health records — are focused on “quality, access and integration of care.”
But he said the systems were not designed or updated to collect information in the format required by the state.
“We are taking steps to change this,” he said. “We are making investments in technology that will facilitate compliance with the state’s data reporting requirements.”
Medi-Cal represents a small portion of Kaiser’s overall business, and some industry experts said the company may have been hesitant to alter its information technology systems to meet the state’s demands.
Kaiser said it serves about 700,000 Medi-Cal enrollees across the state. Rival Anthem Inc. serves more than 1 million Medi-Cal patients.
In Medi-Cal managed care, the state pays insurers a fixed amount per enrollee to provide comprehensive care. That’s different from the conventional fee-for-service system in which the state pays medical providers directly for services rendered.
In addition to being an insurer, Kaiser runs 38 hospitals across the country and hundreds of clinics. More than 18,000 salaried doctors work at its affiliated medical groups. Kaiser operates in eight states and the District of Columbia, but nearly 80 percent of its 10.6 million members are in California. For 2015, the company reported revenue of $60.7 billion and net income of $1.9 billion.
Kaiser has faced other stiff fines from California regulators. In 2013, the California Department of Managed Health Care fined the insurer $4 million for problems related to mental health treatment.
Two years later, the managed care agency criticized Kaiser again for failing to address the long delays in treatment for mental health patients.
Brooks said the state is rolling out a new ratings system for all Medi-Cal managed care plans next year that will track the quality of patient care, appeals processes, contract compliance and other performance measures.
When Cindy Hunter received her Medicare card in the mail last spring, she said she “didn’t know a lot about Medicare.” She and her husband, retired teachers who live in a Philadelphia suburb, decided she didn’t need it because she shared his retiree health insurance, which covered her treatment for ovarian cancer.
“We were so thankful we had good insurance,” she said. So she sent back the card, telling officials she would keep Medicare Part A, which is free for most older or disabled Americans and covers hospitalization, some nursing home stays and home health care. But she turned down Part B, which covers doctor visits and other outpatient care and comes with a monthly premium charge. A new Medicare card arrived that says she only has Part A.
When Stan Withers left a job at a medical device company to become vice president of a small start-up near Sacramento, Calif., he took his health insurance with him. Under a federal law known as COBRA, he paid the full cost to continue his coverage from his previous employer. A few years earlier, when he turned 65, he signed up for Medicare’s Part A. With the addition of a COBRA plan, he thought he didn’t need Medicare Part B.
Hunter and Withers now know they were wrong and are stuck with medical bills their insurance won’t cover. Hunter called it “an honest mistake” and said there was nothing in the written materials she and her husband received indicating that if they had Medicare Part A, his retiree coverage could not replace Medicare Part B. Withers had no idea he made a bad choice.
Thousands of seniors unwittingly make similar mistakes every year, believing that because they have some type of health insurance, they don’t have to worry about signing up for Medicare Part B. Generally, insurance other than that provided by a current employer will not exempt them from Medicare’s strict enrollment requirements. Seniors’ advocates and some members of Congress want to fix the problem, backed by a broad, unlikely group of unions, health insurers, patient organizations, health care providers and even eight former Medicare administrators.
Medicare’s Part B enrollment rules haven’t changed since the program was created in 1965. Seniors can enroll only when they first become eligible — usually three months before and after the month they turn 65 — or when their job-based insurance ends. If they miss this opportunity, they have to wait until the months of January through March to enroll and then coverage only begins July 1. Most won’t be allowed to buy any other health insurance policy during that time.
And if they delay signing up for 12 or more months after becoming eligible, many will be hit with a permanent penalty added to their Part B monthly premium. In 2014, about 750,000 beneficiaries paid late penalties, raising their Part B premiums an average of 29 percent, according to the Congressional Research Service.
“The rules have not changed, but our lives have,” said Joe Baker, president of the Medicare Rights Center, an advocacy group that is leading the effort to update the enrollment process. When Medicare began, the government wanted seniors, especially younger and healthier people, to sign up quickly and so the deadlines and late penalties were incentives to get them in the program.
But these days more seniors work past the Medicare eligibility age, get health insurance through their employer or their spouse’s, or have coverage through the health insurance marketplaces, Baker said. The problem isn’t that people are going without insurance. “The confusion that we really see is with how Medicare interacts with other insurance coverage,” he said.
Hunter, 62, became eligible for Medicare earlier than 65 because she gets Social Security disability benefits. She’s receiving two chemotherapy drugs to control a second reoccurrence of ovarian cancer. This fall her oncologist’s office told her there’s “something going on with your insurance,” she recalled. After many calls to her husband’s retiree plan, Social Security, Medicare and even her congressman, she learned that her insurance would only pay a share of the bills for her cancer treatment after deducting the amount the insurer said was Medicare’s responsibility. “But Medicare isn’t paying because I don’t have Part B,” she said. So Hunter is probably responsible for that portion.
Withers thought the health plan he purchased through his old employer would count as job-based coverage, but COBRA is not a substitute for Medicare Part B, a point no one mentioned when he submitted his paperwork. He should have signed up for Part B when he left his previous job.
“How could there be a rule that no one knows about?” Withers asked.
In addition, the private plan has refused to pay thousands of dollars in medical bills because the company argued that he should have had Part B and those are Medicare’s responsibility.
Confusion over COBRA is just one of many reasons that people miss their opportunity to enroll in Part B. Others think, incorrectly, that getting Veterans Health Administration benefits, job-based health insurance from a company with less than 20 workers, retiree coverage from a formeremployer, or coverage from the health law’s insurance marketplace exempts them from Part B’s lifetime late penalties and waiting periods with no insurance.
To help seniors avoid such mistakes, bipartisan legislation has been introduced in both the House and Senate that would allow people who miss their initial Part B enrollment deadline to sign up in the fall, when millions of seniors already in Medicare are choosing private drug or medical policies. Part B coverage would begin the month after they enroll, said Stacy Sanders, federal policy director at the Medicare Rights Center. It would also allow most people who enroll late to apply for retroactive coverage to their initial eligibility date and request a waiver of the late penalties if they can prove they were misled by an employer, health plan, insurance broker or state official (currently, an exemption may be based only on misinformation from a federal government representative).
“Because I didn’t ask Social Security and they didn’t give me the wrong information, there was nothing they could do,” Hunter said. “They said if they had given me the wrong information, they might be able to do something.”
Seniors “shouldn’t face penalties or gaps in their Part B coverage simply due to bureaucratic snafu,” said Rep. Patrick Meehan, R-Pa., who co-sponsored the House bill. “I’ve had seniors contact my office and say they simply had no idea of existing deadlines — or that they faced penalties down the road for missing them.”
The legislation also would require Medicare officials to notify all Americans prior to their 65th birthday about signing up for Medicare. Currently, the federal government and some states notify only those 64-year-olds who have health insurance though the Affordable Care Act’s marketplaces.
Although the bill appears unlikely to see action before the end of the current congressional session, Meehan said he will reintroduce it in 2017.
Getting an official government notice before turning 65 explaining when to sign up for Part B would “absolutely” help, said Withers. “There should be something that tells people what they need to do.”
Doctors have complained for years that they’re not paid adequately for time-consuming work associated with managing care for seriously ill older patients: consulting with other specialists, talking to families and caregivers, interacting with pharmacists and more.
Under the new rules, physicians will be compensated for legwork involved in working in teams — including nurses, social workers and psychiatrists — to improve care for seniors with illnesses such as diabetes, heart failure and hypertension.
Care coordination for these “high need” patients will be rewarded, as will efforts to ensure that seniors receive effective treatments for conditions such as anxiety or depression.
Comprehensive evaluations of older adults with suspected cognitive impairment will get a lift from new payments tied to the standards that physicians now will be required to follow.
The new Medicare policies reflect heightened attention to the costliest patients in the health care system — mostly older adults who have multiple chronic conditions that put them at risk of disability, hospitalization, and an earlier-than-expected death. Altogether, 10 percent of patients account for 65 percent of the nation’s health spending.
It remains to be seen how many physicians will embrace the services that the government will now reimburse. Organizations that advocated for the new payment policies hope they’ll make primary care and geriatrics more attractive areas of practice in the years ahead.
Here’s a look at what is entailed:
Complex Chronic Care Management
Two years ago, Medicare began paying nurses, social workers and medical assistants to coordinate care for seniors with two or more serious chronic conditions. But low reimbursement and burdensome requirements discouraged most medical practices from taking this on.
New payments for “complex chronic care management” are more generous (an average $93.67 for the first hour, $47.01 for each half hour thereafter) and can be billed more often, making them more attractive.
They’ll cover services such as managing seniors’ transitions from the hospital back home or to a rehabilitation center, coordinating home-based services, connecting patients with resources, and educating caregivers about their conditions.
Many practices will be able to hire care managers with this new financial support, said Dr. Peter Hollmann, secretary of the American Geriatrics Society and chief medical officer of University Medicine, a medical group practice associated with Brown University’s medical school.
To illustrate the benefits, he tells of a recent patient, with diabetes, hypertension and heart failure who was retaining fluid and had poorly controlled blood sugar. After a care manager began calling the 72-year-old man every few days, asking if he was checking his blood sugar or gaining weight, Hoffmann adjusted doses of insulin and diuretics.
“The patient remained at home and he’s doing well, and we likely prevented a hospitalization,” Hoffmann said.
Cognitive Impairment Assessment
Making a dementia diagnosis is difficult, and primary care physicians often fail to do so on a timely basis. But new Medicare policies may help change that by specifying what cognitive examinations should entail and offering enhanced payments.
Physicians who conduct these evaluations are now expected to meet 10 requirements. In addition to performing a careful physical exam and taking a detailed history, they need to assess an older adult’s ability to perform activities of daily living, their safety, behavioral and neuropsychiatric symptoms, and caregivers’ knowledge, needs and abilities.
All the medications the senior is taking should be evaluated, and standardized tests used to assess cognition. Efforts to elicit the patient’s goals and values need to occur in the context of advance planning, and a care plan must be crafted and shared with caregivers.
Medicare will pay $238.30 for the initial assessment and additional fees for creating a care plan and performing care management.
“Hopefully, this will kick start the development of practices that provide these dementia-related services,” said Dr. Robert Zorowitz, senior medical director at OptumCare CarePlus, a managed Medicare long-term care program in New York City.
Care Between Patient Visits
Until now, the rule has been: if the doctor is with a patient, he can bill for his time. But if he takes home medical records to review at night or talks by phone with a caregiver who’s concerned about her elderly mother, that time goes unpaid.
That will change next year: Medicare will begin paying $113.41 for the first hour spent in these kind of activities and $54.55 for every subsequent half hour.
For the first time, “this recognizes the significant and valuable services that physicians perform in between face-to-face visits,” said Dr. Phillip Rodgers, co-chair of the public policy committee at the American Academy of Hospice and Palliative Medicine.
Physicians will also get extra reimbursement for extra time they spend in person with complex patients or their caregivers.
Dr. Paul Tatum, an associate professor of clinical family and community medicine at the University of Missouri School of Medicine recently scheduled a half hour for a patient in his mid-70s with high blood pressure, kidney disease, skin issues and cognitive impairment. But the visit ran to 90 minutes when it became clear the gentleman was more confused than ever, falling, not eating well, not taking medications, and needed more help.
“Much of what we did for this patient fits in the new Medicare codes, which recognize the extent of what’s needed to care for people with complex illnesses,” the doctor said.
Integrating Behavior Health
Research has shown the seniors with depression — a frequent complication of serious illness — benefit when primary care physicians collaborate with psychologists or psychiatrists and care managers track their progress.
Now, Medicare will begin paying $142.84 for the first 70 minutes that physicians and behavioral health providers work together, $126.33 for the next hour, and $66.04 per half hour for a care manager who stays in touch with patients and tracks whether they’re improving.
Care managers may work on site or off; psychologists and psychiatrists will be called for consultations, as needed.
“Accessing mental health services is a really big problem for my patients, and having professionals ready to work with me and compensated to do so will be extraordinarily valuable,” said Rodgers of the hospice and palliative medicine academy.
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President Donald Trump’s administration made explicit this weekend its commitment to an old GOP strategy for managing Medicaid, the federal-state insurance plan that covers low-income people — turning control of the program to states and capping what the federal government spends on it each year.
It’s called “block granting.” Right now, Medicaid, which was expanded under the 2010 health law to insure more people, covers almost 75 million adults and children. Because it is an entitlement, everyone who qualifies is guaranteed coverage and states and the federal government combine funds to cover the costs. Conservatives have long argued the program would be more efficient if states got a lump sum from the federal government and then managed the program as they saw fit. But others say that would mean less funding for the program —eventually translating into greater challenges in getting care for low-income people.
Block granting Medicaid is a centerpiece of health proposals supported by House Speaker Paul Ryan and Rep. Tom Price, Trump’s nominee to run the Department of Health and Human Services. This weekend, Trump adviser Kellyanne Conway emphasized the strategy as key to the administration’s health policy.
But what would this look like, and why is it so controversial? Let’s break down how this policy could play out, and its implications — both for government spending and for accessing care.
Q: How would a block grant work?
So far, Trump hasn’t released details on his particular plan. But the basic idea is that states would get fixed federal grants that would be based on the state and federal Medicaid spending in that state. The grant would grow slightly each year to account for inflation. However, the inflation adjustments are expected to be less than the medical inflation rate.
Currently, states share the cost of Medicaid with the federal government. Poorer states pay less: In Mississippi, for instance, the federal government pays about three-fourths the cost of the program, compared to 50 percent in Massachusetts.
The federal funding is open-ended, but in return, states must cover certain services and people — for instance, children, pregnant women who meet income criteria and parents with dependent children. Under a block grant, states would have more freedom to decide who qualifies, and for what services.
How much freedom states will have will depend. Many proposals loosen state coverage requirements, which could mean that if states opted to cap enrollment, for example, people who are technically eligible might not get coverage, noted Edwin Park, vice president for health policy at the left-leaning Center for Budget and Policy Priorities in Washington, D.C.
“It’s going to be up to the specifics of any block grant proposal looking at legally, whether there would be certain benefits states would have to provide,” Park said. “Usually states are given unfettered flexibility, or near unfettered flexibility.”
Q: Is this the same thing as a “per capita cap”?
The block grant differs slightly from that other conservative favorite. Per capita caps have also been endorsed by Ryan. Under those, states also get a fixed amount of money each year, but that sum is calculated based on how many people are in the program. Since block grants aren’t based on individual enrollment each year, the state wouldn’t necessarily get more money to compensate if, say, more people qualified for Medicaid because of an economic downturn. In theory, a per capita caps system would increase funding. But if, say, an expensive new drug entered the market, or a costly new disease emerged, the Medicaid budgets still wouldn’t change to reflect that, Park noted.
Q: It seems like both Democrats and Republicans are pretty fired up about this. Why is this such a big deal?
The block grant system is a radical shift from how Medicaid has worked previously. Republicans say it could save the government billions of dollars. But other analysts note those savings could limit access to health care if the funding becomes squeezed. Thanks to the 2010 health law, which led states to expand Medicaid eligibility, more people would face the brunt of those cuts.
The fiscal impact: The non-partisan Congressional Budget Office estimates recent Republican block grant proposals could cut Medicaid spending by as much as a third over the next decade. The cuts would start small, growing larger over the years.
Many Republicans say that, because states will have greater flexibility, they can innovate with their Medicaid programs.
But opponents note that experimentation alone won’t make up for smaller budgets. The fixed grants could mean states cut benefits or force beneficiaries to take on more cost-sharing, for instance.
Some federal requirements are necessary, said Tom Miller, a resident fellow at the conservative American Enterprise Institute. Block granting could “be great or a disaster,” he said, depending on how it’s implemented. “The ideal model from the view of states is, ‘Give us the money, and I’ll let you know what I did.’ That’s not going to work,” he said.
The potential impact is significant. More than 10 million who got insurance through Obamacare are on Medicaid and could be affected. That’s also why some Republican governors — particularly in states that embraced the health law’s Medicaid expansion — have joined their Democrat peers in expressing qualms.
Q: You say this is an “old GOP idea.” How old?
This dates back at least until the 1980s. President Ronald Reagan pushed Medicaid block grants in 1981, House Speaker Newt Gingrich in 1995 and President George W. Bush in 2003.
Gingrich’s plan came closest — it passed through Congress but failed to garner approval from then-President Bill Clinton. He eventually consented to block grant welfare, resulting in the Temporary Assistance for Needy Families program.
Q: I don’t get my insurance through Medicaid. So why should I care?
Medicaid is a major government program. In 2015, it accounted for 17 percent of the nation’s health care expenditures — money that comes from taxpayer dollars.
Plus, the 75 million people covered make up almost a quarter of the U.S. population. And almost two-thirds of people in nursing homes pay for their care using Medicaid — indeed, most of the program’s spending is on the elderly and disabled. If lawmakers are trying to save $1 trillion over a decade, it’s hard to see how that could happen without touching elderly benefits, noted Matt Salo, executive director of the National Association of Medicaid Directors.
Even if you aren’t covered by Medicaid, you probably know someone who would be affected by block granting.
Revamping Medicaid could also affect what services hospitals provide, and their economic strength. Specifically, hospitals and clinics that treat large numbers of Medicaid beneficiaries may have to rethink their budgets, what services they can provide and how many people they can employ. That matters from a health care standpoint, but also a jobs one — hospitals are often large community employers.
Finally, the debate could also set the tone for how Congress treats other so-called “entitlement programs,” such as Medicare and Social Security. The CBO estimates that, barring any meaningful change, spending on Social Security and other health programs will account for about 16 percent of all the country’s yearly goods and services — the gross domestic product — by 2046. A successful change in Medicaid could pave the way for similar changes in other programs.
Q: What are the odds this actually happens?
Now that the GOP has control over Congress and the White House, Republicans have made health care a top priority, including provisions in the new budget to repeal Obamacare, for instance.
Large portions of a block grant proposal could be achieved through budgetary reconciliation, both Park and Miller said. That means it could pass without Democrat support, even in the Senate, since it would only require 51 votes.
But without more specifics, any assessment of the consequences is, at best, informed speculation.
“What does a block grant mean in terms of rules? … No one’s ever gotten far enough to say, ‘Here’s what this actually means,’” Salo said. “This is uncharted territory for a lot of us.”
KHN Senior Correspondent Mary Agnes Carey contributed to this article.
This story was updated to correct a reference to a CBO report on spending. CBO estimates that spending on Social Security and health programs will account for about 16 percent of the yearly U.S. gross domestic product by 2046, not 16 percent of federal spending.
It took a lot of convincing for John Evard to go to rehab. Seven days into his stay at the Las Vegas Recovery Center, the nausea and aching muscles of opioid withdrawal were finally beginning to fade.
“Any sweats?” a nurse asked him as she adjusted his blood pressure cuff. “Last night it was really bad, but not since I got up,” replied Evard, 70, explaining that he’d awakened several times with his sheets drenched.
Even for him, it was hard to understand how he ended up 300 miles away from his home in Scottsdale, Ariz., at this bucolic facility in the suburbs of Vegas. “This is the absolute first time I ever had anything close to addiction,” he said. He prefers to use the term “complex dependence” to describe his situation: “It was, shall we say, a big surprise when it happened to me.”
As the nation grapples with a devastating opioid epidemic, concerns have primarily focused on young people buying drugs on the street. But America’s elderly also have a problem. Over the past several decades, physicians have increasingly prescribed seniors pain medications to address chronic pain from arthritis, cancer, neurological diseases and other illnesses that become more common in later life.
A recent study found that in 2011, 15 percent of seniors were prescribed an opioid when they were discharged from the hospital; three months later, 42 percent were still taking the pain medicine.
One in three Americans who have taken prescription opioids for at least two months say they became addicted to or physically dependent on the medications, according to a recent Washington Post-Kaiser Family Foundation poll. (KHN is an editorially independent program of the foundation.)
It’s no surprise, then, that some seniors end up addicted.
Evard spent his life working as a corporate tax attorney. He’s spry and white haired, with a contagious grin. A few years ago he and his wife retired to Arizona with their eyes on the golf course. The dream didn’t last long. Just months later, a virus infected Evard’s left ear. Overnight, he lost half his hearing and was left with chronic pain. In January, he had surgery to fix the problem.
“From the surgeon’s standpoint, the operation was successful. The problem was, the pain didn’t go down. It went up,” he recalled.
His doctors prescribed opioids, including Oxycontin. “They decreased the pain, particularly at first,” said Evard. “As time went on they had less and less effect, and I had to take more and more.”
As the doctors increased his dosage, Evard’s once active life fell apart. He was confused, depressed, and still in pain. “I was effectively housebound. I couldn’t play golf anymore. I couldn’t go to social events with my friends or my wife.”
He couldn’t think of anything except the pills and when he could have the next one. He knew he was in trouble — despite having taken them exactly as his doctor instructed.
“I was a rule-follower,” he said. “And I still ended up, in a mess!”
In 2009, the American Geriatric Society came out strongly in favor of opioids, recommending that seniors with moderate to severe pain be considered for opioid therapy. The panel cited evidence that seniors were less likely than others to become addicted.
“You don’t see people in this age group stealing a car to get their next dose,” Dr. Bruce Ferrell, chairman of the panel that issued the Society’s guidelines, told The New York Times at the time.
Mel Pohl, medical director of the Las Vegas Recovery Center, called that conclusion a “horrible misconception.”
“There’s no factual, scientific basis for that. The drug takes over in the brain. It doesn’t matter how old the brain is.”
The problem is that chronic pain is common as people age, and there aren’t many good options to treat it. Even aspirin and ibuprofen carry bleeding risks. The 2009 AGS guidelines are no longer in use, but opioid medications remain a crucial tool to treat pain in older people. Most people are able to take opioids in small doses for short periods of time without a problem.
“We really don’t use opioids necessarily as the first line of treatment because we understand what the risks are. But we also don’t want to see our patients suffering needlessly if we can provide them with relief,” said Dr. Sharon Brangman, past president of the AGS. The trick, she said, is to try non-pharmacological options such as acupuncture first and to use the smallest effective opioid dose possible, if necessary.
Still, most of the seniors at the Las Vegas Recovery Center have taken the drugs as prescribed by a willing doctor trying to address their pain, said Pohl. That pattern sets them apart from many of the younger patients, many of whom start buying drugs on the black market after being turned away by physicians.
Nonetheless, in the past 20 years, the rate of hospitalization among seniors that is related to opioid overuse has quintupled. But relatively few of them end up in rehab. Pohl said that’s due to a combination of factors.
“They’ve grown up in an era where drug addiction and alcoholism [were] evil, and I think that’s internalized for some of the folks that I’ve seen,” he said, so they don’t seek help, particularly from an in-patient facility. Also, some rehabs not are equipped to deal with the complex medical problems common among older people.
Another problem are patients whose addictions have been misdiagnosed as dementia. “We’ll have a family come [visit], three weeks into treatment, and it’s like ‘Oh my God, you’re back! I haven’t seen that glimmer in your eye in 20 years!’” said Pohl.
It took John Evard about a week to get over the vomiting and flu-like symptoms of detox, which can be particularly hard on older patients. He’s speaking out now because he doesn’t want other seniors to fall into the same trap.
“Don’t just take the prescription because it’s part of the checkout process from the hospital,” he cautioned. “It’s your body, take charge of it, and push for alternatives at all costs. And if you do go on, get off them as fast as you can.”
Tai Boxley needs a hysterectomy. The 34-year-old single mother has uterine prolapse, a condition that occurs when the muscles and ligaments supporting the uterus weaken, causing severe pain, bleeding and urine leakage.
Boxley and her 13-year-old son have health insurance through her job as an administrative assistant in Tulsa, Okla. But the plan has a deductible of $5,000 apiece, and Boxley’s doctor said he won’t do the surgery until she prepays her share of the cost. His office estimates that will be as much as $2,500. Boxley is worried that the hospital may demand its cut as well before the surgery can be performed.
“I’m so angry,” Boxley said. “If I need medical care I should be able to get it without having to afford it up front.”
At many doctors’ offices and hospitals, a routine part of doing business these days is estimating patients’ out-of-pocket payments and trying to collect it up front. Eyeing retailers’ practice of keeping credit card information on file, “there’s certainly been a movement by health care providers to store some of this information and be able to access it with patients’ permission,” said Mark Rukavina, a principal at Community Health Advisors in Chestnut Hill, Mass., who works with hospitals on addressing financial barriers to care.
But there’s a big difference between handing over a credit card to cover a $20 copayment versus suddenly being confronted with a $2,000 charge to cover a deductible, an amount that might take months to pay off or exceed a patient’s credit limit. Doctors may refuse to dispense needed care before the payment is made, even as patient health hangs in the balance.
The strategy leaves patients financially vulnerable too. Once a charge is on a patient’s credit card, they may have trouble contesting a medical bill. Likewise, a service placed on a credit card represents a consumer’s commitment that the charge was justified, so nonpayment is more likely to harm a credit score.
Approximately three-quarters of health care and hospital systems ask for payment at the time services are provided, a practice known as “point-of-service collections,” estimated Richard Gundling, a senior vice president at the Healthcare Financial Management Association, an industry group. He could not say how many were doing so for higher priced services or for patients with high-deductible plans, situations that would likely result in out-of-pocket outlays of hundreds or thousands of dollars.
“For providers, there’s more risk with these higher deductibles, because the chance of being able to collect it later diminishes,” Gundling said.
But the practice leaves many patients resentful.
After arriving by ambulance at the emergency department, Susan Bradshaw lay on a gurney in her hospital gown with a surgical bonnet on her head, waiting to be wheeled into surgery to remove her appendix at a hospital near her home in Maitland, Fla. A woman in street clothes approached her. Identifying herself as the surgeon’s office manager she demanded that Bradshaw make her $1,400 insurance payment before the surgery could proceed.
“I said, ‘You have got to be kidding. I don’t even have a comb,’” Bradshaw, a 68-year-old exhibit designer, told the woman on that night eight years ago. “I don’t have a credit card on me.”
The woman crossed her arms and Bradshaw remembers her saying, “You have to figure it out.”
As providers aim to maximize their collections, many contract with companies that help doctors and hospitals secure payments up front, often providing scripts that prompt staff to talk with patients about their payment obligations and discuss payment scenarios as well as software that can estimate what a patient will owe.
But as hospitals and doctors push for point-of-service payments to reduce bad debt from patients with increasingly high deductibles, the risk is that patients will delay care and end up in the emergency room, Rukavina said. “Patients are essentially paying for their procedures up front,” he said. “It may not be a significant amount compared to their salary, but they don’t necessarily have it available at the time of service.”
The higher their deductible, the less likely patients are to pay what they owe, according to an analysis of 400,000 claims by the Advisory Board, a health care research and consulting firm. While more than two-thirds of patients with a deductible of less than $1,000 were likely to pay at least some portion of what they owe, just 36 percent of those with deductibles of more than $5,000 did so, the analysis found.
Fifty-one percent of workers with insurance through their employer had a deductible of at least $1,000 for single coverage this year, according to the Kaiser Family Foundation’s annual survey of employer health insurance. (KHN is an editorially independent program of the foundation.)
Boxley pays $110 a month for her family plan. She could not afford the premiums on plans with lower deductibles that her employer offered. She plans to talk with the doctor and hospital about setting up a payment plan so she can get the surgery in January.
“I’ll make payments,” Boxley said, although she acknowledged what she could pay monthly would be small. If that doesn’t pan out, she figures she’ll have to use student loan money she got for graduate school to cover what she owes.
Still, experts say that trying to pin patients down for payment in more acute settings, such as the emergency department, may cross a line.
Under the federal Emergency Medical Treatment and Labor Act (EMTALA), a patient who has a health emergency has to be stabilized and treated before any hospital personnel can discuss payment with them. If it’s not an emergency, however, those discussions can occur before treatment, said Dr. Vidor Friedman, an emergency physician who is the secretary-treasurer of American College of Emergency Physicians’ board of directors.
Bradshaw finally got her appendix removed by calling a friend, who read his MasterCard number over the phone. The surgery was uneventful and Bradshaw was home within 24 hours.
“It’s a very murky, unclear situation,” Friedman said of Bradshaw’s experience, noting that a case might be made that her condition wasn’t life threatening. “At the very least it’s poor form, and goes against the intent if not the actual wording of EMTALA.”
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When Dr. Christopher Callahan examines older patients, he often hears a similar refrain.
“I’m tired, doctor. It’s hard to get up and about. I’ve been feeling kind of down, but I know I’m getting old and I just have to live with it.”
This fatalistic stance relies on widely-held but mistaken assumptions about what constitutes “normal aging.”
In fact, fatigue, weakness and depression, among several other common concerns, aren’t to-be-expected consequences of growing older, said Callahan, director of the Center for Aging Research at Indiana University’s School of Medicine.
Instead, they’re a signal that something is wrong and a medical evaluation is in order.
“People have a perception, promulgated by our culture, that aging equals decline,” said Dr. Jeanne Wei, a geriatrician who directs the Donald W. Reynolds Institute on Aging at the University of Arkansas for Medical Sciences.
“That’s just wrong,” Wei said. Many older adults remain in good health for a long time and “we’re lucky to live in an age when many remedies are available.”
Of course, peoples’ bodies do change as they get on in years. But this is a gradual process. If you suddenly find your thinking is cloudy and your memory unreliable, if you’re overcome by dizziness and your balance is out of whack, if you find yourself tossing and turning at night and running urgently to the bathroom, don’t chalk it up to normal aging.
Go see your physician. The earlier you identify and deal with these problems, the better. Here are four common concerns that should spark attention — only a partial list of issues that can arise:
Fatigue. You have no energy. You’re tired all the time.
Don’t underestimate the impact: Chronically weary older adults are at risk of losing their independence and becoming socially isolated.
Nearly one-third of adults age 51 and older experience fatigue, according to a 2010 studyin the Journal of the American Geriatrics Society. (Other estimates are lower.) There are plenty of potential culprits. Medications for blood pressure, sleep problems, pain and gastrointestinal reflux can induce fatigue, as can infections, conditions such as arthritis, an underactive thyroid, poor nutrition and alcohol use.
All can be addressed, doctors say. Perhaps most important is ensuring that older adults remain physically active and don’t become sedentary.
“If someone comes into my office walking at a snail’s pace and tells me ‘I’m old; I’m just slowing down,’ I’m like no, that isn’t right,” said Dr. Lee Ann Lindquist, a professor of geriatrics at Northwestern University’s Feinberg School of Medicine in Chicago.
“You need to start moving around more, get physical therapy or occupational therapy and push yourself to do just a little bit more every day.”
Appetite loss. You don’t feel like eating and you’ve been losing weight.
This puts you at risk of developing nutritional deficiencies and frailty and raises the prospect of an earlier-than-expected death. Between 15 and 30 percent of older adultsare believed to have what’s known as the “anorexia of aging.”
Physical changes associated with aging — notably a reduced sense of vision, taste and smell, which make food attractive — can contribute. So can other conditions: decreased saliva production (a medication-induced problem that affects about one-third of older adults); constipation (affecting up to 40 percent of seniors); depression; social isolation (people don’t like to eat alone); dental problems; illnesses and infections; and medications (which can cause nausea or reduced taste and smell).
If you had a pretty good appetite before and that changed, pay attention, said Dr. Lucy Guerra, director of general internal medicine at the University of South Florida.
Treating dental problems and other conditions, adding spices to food, adjusting medications and sharing meals with others can all make a difference.
Depression. You’re sad, apathetic and irritable for weeks or months at a time.
Depression in later life has profound consequences, compounding the effects of chronic illnesses such as heart disease, leading to disability, affecting cognition and, in extreme cases, resulting in suicide.
A half century ago, it was believed “melancholia” was common in later life and that seniors naturally withdrew from the world as they understood their days were limited, Callahan explained. Now, it’s known this isn’t so. Researchers have shown that older adults tend to be happier than other age groups: only 15 percent have major depression or minor variants.
Late-life depression is typically associated with a serious illness such as diabetes, cancer, arthritis or stroke; deteriorating hearing or vision; and life changes such as retirement or the loss of a spouse. While grief is normal, sadness that doesn’t go away and that’s accompanied by apathy, withdrawal from social activities, disturbed sleep and self-neglect is not, Callahan said.
With treatments such as cognitive behavioral therapy and anti-depressants, 50 to 80 percent of seniors can expect to recover.
Weakness. You can’t rise easily from a chair, screw the top off a jar, or lift a can from the pantry shelf.
You may have sarcopenia — a notable loss of muscle mass and strength that affects about 10 percent of adults over the age of 60. If untreated, sarcopenia will affect your balance, mobility and stamina and raise the risk of falling, becoming frail and losing independence.
Age-related muscle atrophy, which begins when people reach their 40s and accelerates when they’re in their 70s, is part of the problem. Muscle strength declines even more rapidly — slipping about 15 percent per decade, starting at around age 50.
The solution: exercise, including resistance and strength training exercises and good nutrition, including getting adequate amounts of protein. Other causes of weakness can include inflammation, hormonal changes, infections and problems with the nervous system.
Watch for sudden changes. “If you’re not as strong as you were yesterday, that’s not right,” Wei said. Also, watch for weakness only on one side, especially if it’s accompanied by speech or vision changes.
Taking steps to address weakness doesn’t mean you’ll have the same strength and endurance as when you were in your 20s or 30s. But it may mean doctors catch a serious or preventable problem early on and forestall further decline.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visitkhn.org/columnists to submit your requests or tips.
Baby boomers are getting high in increasing numbers, reflecting growing acceptance of the drug as treatment for various medical conditions, according to a study published Monday in the journal Addiction.
The findings reveal overall use among the 50-and-older study group increased “significantly” from 2006 to 2013. Marijuana users peaked between ages 50 to 64, then declined among the 65-and-over crowd.
Men used marijuana more frequently than women, the study showed, but marital status and educational levels were not major factors in determining users.
The study by researchers at New York University School of Medicine suggests more data is needed about the long-term health impact of marijuana use among seniors. Study participants said they did not perceive the drug as dangerous, a sign of changing attitudes.
The study was based on 47,140 responses collected from the National Survey on Drug Use and Health.
Joseph Palamar, a professor at the NYU medical school and a co-author of the study, said the findings reinforce the need for research and a call for providers to screen the elderly for drug use.
“They shouldn’t just assume that someone is not a drug user because they’re older,” Palamar said.
Growing use of the drug among the 50-and-older crowd reflects the national trend toward pushing cannabis into mainstream culture. Over 22 million people used the drug in 2015, according to the Substance Abuse and Mental Health Services Administration. Eight states have legalized the drug for recreational use as well as medicinal use, according to Marijuana Policy Project, a non-profit advocacy group dedicated to enacting non-punitive marijuana policies across the United States. The drug has also proved to be a financial boon for state economies, generating over $19 million in September in Colorado.
Researchers also uncovered an increasing diversity in marijuana users. Past-year use doubled among married couples and those earning less than $20,000 per year.
More people living with medical conditions also sought out marijuana. The study showed the number of individuals living with two or more chronic conditions who used the drug over the past year more than doubled. Among those living with depression, the rate also doubled to 11.4 percent.
Palamar says the increase among the sick could be attributed to more individuals seeking to self-medicate. Historically, the plant was difficult to research due to the government crackdown on the substance. The Drug Enforcement Administration classifies the plant as a Schedule I substance, “defined as drugs with no currently accepted medical use and a high potential for abuse.”
Benjamin Han, assistant professor at the New York University School of Medicine and the study’s lead author, fears that marijuana used with prescription drugs could make the elderly more vulnerable to adverse health outcomes, particularly to falls and cognitive impairment.
“While there may be benefits to using marijuana such as chronic pain,” he said, “there may be risks that we don’t know about.”
The push and pull between state and federal governments has resulted in varying degrees of legality across the United States. Palamar says this variation places populations at risk of unknowingly breaking the law and getting arrested for drug possession. The issue poses one of the biggest public health concerns associated with marijuana, Palamar says.
But unlike the marijuana of their youth, seniors living in states that legalized marijuana for medicinal use now can access a drug that has been tested for quality and purity, said Paul Armentano deputy director of NORML, a non-profit group advocating for marijuana legalization. Additionally, the plant is prescribed to manage diseases that usually strike in older age, pointing to an increasing desire to take a medication that has less side effects than traditional prescription drugs.
The study found over half of the users picked up the habit before turning 18, and over 90 percent of them before age 36.
“We are coming to a point where state lawmakers are responding to the rapidly emerging consensus-both public consensus and a scientific consensus — that marijuana is not an agent that possesses risks that qualifies it as a legally prohibited substance,” he said.
Montana State Senator Ed Buttrey is a no-nonsense businessman from Great Falls. Like a lot of Republicans, he’s not a fan of the Affordable Care Act, nor its expansion of Medicaid, the health insurance for the poor and disabled.
“We didn’t want to implement a plan that was another entitlement that just had a bunch of people signing up to get free or cheap or subsidized health care,” Buttrey said. “We wanted a plan that said, ‘We’re going to get you on. We’re going to get you healthy. We’re going to identify your barriers to employment or better employment, and then we’re going to move you off the plan.’”
So Buttrey wrote a Medicaid expansion bill for Montana that linked the health coverage to a job training program. He wanted everyone getting benefits to have to meet with a labor specialist who would help them figure out how to get a job or to get a better paying job.
The goal is to “make them healthier, get them off social programs, get them off dependence on government, get them into higher wage jobs that have a future that possibly pay benefits. That’s a great benefit for the state,” he said.
But so far, federal officials said states can’t make participation in a work program mandatory for Medicaid recipients. Montana, instead, had to make its job training component voluntary.
Republican leaders across the country have long angled for more state control over Medicaid. The program’s funding comes from both states and the federal government, with the U.S. Department of Health and Human Services scrutinizing states’ use of the money. In Montana and many other states, the bulk of Medicaid funding comes from the federal government. HHS in a Trump administration may let states have more leeway — in fact, Seema Verma, Trump’s pick to run that division of HHS, advocated for more state control when she helped Indiana expand Medicaid. So the door could open to more Medicaid experiments like the one Buttrey has been pushing for.
The feds’ rejection of mandatory job training meant Buttrey was barely able to win enough votes in Montana’s Republican majority legislature to pass Medicaid expansion in 2015 last April. How’s it working?
“I think it’s a success story. I love this. I’m the poster child,” says Ruth McCafferty. She is a 53-year-old single mom from Kalispell, with three kids at home. She lost her job with a lending company last spring, and she had no idea there was a new job training program available when she signed up for Medicaid. She was just focused on finding a way to afford the drugs she needs to control her diabetes and asthma.
“One inhaler that I do is $647,” she says, bringing her medication costs to about $1,000 a month. “My plan was not to get them, only, like, a couple of them that were affordable, like $60, and the rest of them I was like, I guess I’ll just be called ‘Wheezy’ from now on!”
McCafferty instead got Medicaid, filled her prescriptions, and she got free online training to become a mortgage broker. The state even paid for her 400-mile roundtrip to Helena to take the certification exam. And now they’re paying part of her salary at a local business as part of an apprenticeship to make her easier to hire.
“It’s awesome!” she said.
Of the 53,000 Montanans who’ve signed up for expanded Medicaid, only about 3,000 have signed up for help getting a job. That’s in part because the federal government won’t allow states to use Medicaid money for it. To set it up here, Buttrey had to cobble together funding from other jobs programs and squeeze $1 million out of a reluctant state legislature.
Giving states the flexibility to tie their Medicaid programs to work requirements is an idea that’s likely to be popular with the new Congress and Trump administration. But health policy researcher Joan Alker, who runs the Center for Children and Families at Georgetown University, warns that it could backfire.
“I think it’s great and well worth doing to link people who might not be aware of existing job training programs or other kinds of work supports that can help them work. What I think is problematic is when this becomes a stick and not a support,” she said.
Alker said many people on Medicaid already have jobs, often low-paying ones that don’t offer health insurance, and they have little time for new training. In Montana, about two-thirds of those on Medicaid are already working. She said if people fail to meet a work requirement and then lose health benefits as a result, they’ll likely just get sicker and become less able to work.
Giving Medicare authority to negotiate drug prices is the best way to keep those spiraling costs under control for the program’s recipients, departing Health and Human Services Secretary Sylvia Burwell said Monday.
“Those drug costs are continuing to grow,” Burwell said at the National Press Club in Washington, D.C. The question, she said, is not whether Congress should give her department the necessary power, but rather “what is the alternative?”
Burwell largely devoted her remarks to defending the Affordable Care Act, the Obama administration health care law that is facing repeal by a Republican-controlled Congress and President-elect Donald Trump. HHS billed the speech as her last on the health law as the department’s secretary.
As she touted the ACA’s successes, Burwell acknowledged the law has fallen short in certain areas. In an exit memo released Friday, Burwell implored Congress to create a public option to increase competition in areas where few insurers offer plans. President Barack Obama also said last week he would have added that feature into the law if he could start over “from scratch.”
She rejected criticism that the ACA, often called Obamacare, is collapsing.
“Are there things that need to be improved? Are there places where more competition could help affordability? Yes. But the idea of disaster and collapse — those comments need to be examined.”
Burwell also dismissed the idea of repealing the law without a comprehensive replacement in place, saying a delay would bring chaos to individual insurance markets. Insurers would drop out or raise prices, and consumers would be unable to find or afford coverage.
She said any replacement plan must meet three requirements: cover as many or more people as the ACA does, maintain quality care and keep down health care costs. Republicans haven’t offered enough details to even evaluate a plan under those benchmarks, Burwell said.
“I don’t think most women think it’s a nitty-gritty detail whether their contraception is covered at no additional cost. I don’t think it’s a nitty-gritty detail whether or not your preexisting condition is covered,” she said. “That’s the level that the conversation needs to get to.”
Both benefits are required under the health law.
Republicans who are trying to repeal Obamacare and replace it with an alternative are looking for easy solutions to a complicated problem, and one faulty move could wreck the entire health care system, Burwell said.
She compared the health law to Jenga, a game where players take turns removing one wooden block at a time from a tower of 54 without making it topple. Republicans, she said, are looking for easy pieces to take out of the law. But less-popular provisions — such as the individual mandate requiring all Americans to purchase health insurance — are akin to an integral Jenga piece that props up the more popular parts, like banning insurance companies from discriminating against people with preexisting conditions.
Silver bullets don’t exist, she said.
“Instead, one of the most important things I’ve learned from implementing the Affordable Care Act is that if something sounds too good to be true, it usually is.”
The high prices Americans pay for generic drugs may have been cooked up by pharmaceutical salespeople on golf courses, at a New Jersey steakhouse or over martinis at a “Girls Nights Out” in Minnesota.
Details emerging from an ongoing investigation show that drug company employees gathered regularly at such swanky locations and conspired to keep prices and profits high, according to interviews and a complaint filed last week in U.S. District Court by Attorneys General in 20 states.
“The wining and the dining and the dinners and the social repertoire sort of led to an atmosphere in which follow up conversations could occur [and] where price fixing could occur … because they had these relationships,” said Minnesota Attorney General Lori Swanson in an interview. “I think people should be absolutely appalled.”
The lawsuit hits home for many middle-class families who have struggled in recent years to pay for generic medications while prices for some drugs soared more than 8,000 percent. The price for a decades-old antibiotic called doxycycline, for example, jumped from $20 for a bottle of 500 pills in October 2013 to more than $1,800 in April 2014.
That price hike was the result of secret efforts by generic drugmakers to make as much money as possible, the complaint says. Maine Attorney General Janet T. Mills said, “It is unconscionable for anyone to manipulate the system in order to line their pockets at the expense of people who need access to affordable medications in order to remain healthy.”
The ongoing Attorneys General investigation began in 2014, according to the complaint, and has “uncovered evidence of a broad, well-coordinated and long-running series of schemes.”
The companies accused of price fixing include Aurobindo Pharma USA, Citron Pharma, Heritage Pharmaceuticals, Mayne Pharma, Teva Pharmaceuticals USA and Mylan Pharmaceuticals, which has come under fire for an unrelated increase in the cost of its EpiPen, used for severe allergic reactions. The Justice Department also charged two former executives at Heritage with price fixing.
In addition to doxycycline, the companies and executives were charged with fixing the price of an oral diabetes drug called glyburide, which helps control blood sugar.
Spokeswomen for Teva and Mylan denied any wrongdoing. In a statement, Heritage said that it fired the two employees accused of price fixing in August and has filed a separate lawsuit against them, accusing them of embezzlement.
“We are fully cooperating with all aspects of the Department of Justice’s continuing investigation,” Heritage said. Aurobindo, Citron and Mayne did not respond to requests for interviews.
In an interview Friday, Connecticut Attorney General George Jepsen said, “The issues we’re investigating go way beyond the two drugs and the six companies. Way beyond … We’re learning new things every day.”
Generic drugs now account for 80 percent of prescriptions in the U.S., with sales of $74.5 billion in 2015. These drugs saved consumers $193 million in 2011 alone, because their prices are typically a fraction of the cost of brand-name drugs. Both consumers and taxpayers have been hurt by skyrocketing drug costs, according to the complaint. Medicaid plans spent more than $500 million from June 2013 to June 2014 on generic drugs whose prices more than doubled.
Generic drugmakers have explained recent price increases as the result of “a myriad of benign factors, such as industry consolidation, FDA-mandated plant closures or elimination of unprofitable generic drug product lines,” according to the complaint. In truth, the explanation for soaring prices is “much more straightforward and sinister — collusion among generic drug competitors,” the complaint said.
“It’s always suspicious when you see dramatic increases in price in areas where there’s really no market protection, either through patents or something else,” said Dana Goldman, director of the Schaeffer Center for Health Policy and Economics at the University of Southern California.
Executives from Heritage, a New Jersey company described as the “principal architect and ringleader of the conspiracies,” sought out competitors and got them to “agree to raise prices for a large number of generic drugs,” according to the complaint.
A Heritage saleswoman from Minnesota would allegedly organize the Girls Nights Out, Swanson said. The gatherings were sometimes called “women in the industry” meetings, as if the aspiring executives intended to mentor each other on the secrets to getting ahead in a man’s world.
But the cozy cocktail conversation veered far from career advice. Instead, the saleswomen shared sensitive information about their companies’ business plans, according to the complaint.
Male drug industry executives weren’t idle, either. In 2014, at least 13 male CEOs, company presidents and senior vice presidents allegedly met at a steakhouse in Bridgewater, N.J. At these “industry dinners,” one company typically paid for dinner for all of the guests. Executives decided which company would pay based on alphabetical order. Drug company representatives socialized at trade shows, golf outings and conferences, as well, the complaint said.
Executives discussed how to divvy up market share to avoiding competing with each other for business, according to the complaint. Companies either declined to bid for certain customers or offered “cover bids” that they knew would be rejected. Companies knew they were breaking the law and took care to have most of these discussions on cell phones or in person, to avoid leaving a paper trail. Employees destroyed evidence from text messages and emails, the complaint said.
Heritage and other companies routinely consulted their competitors before selling new medications so that they could avoid competing on prices, the complaint said. The agreement gave the illusion of competition, but kept prices high.
In 2014, for example, Heritage “devised a scheme whereby it would seek out its competitors” and arrange to “raise prices for a large number of generic drugs,” including glyburide, whose price was targeted for a 200 percent increase, according to the complaint. Executives instructed the Heritage sales team to immediately contact competitors to agree on price increases.
Heritage executives destroyed incriminating emails, knowing that the company didn’t have a policy about keeping copies of old messages, according to the complaint. Employees involved in the scheme “deleted all text messages from their company iPhones regarding their illegal communications with competitors.”
“In August 2016, following an internal investigation that revealed a variety of serious misconduct by the individuals charged today, Heritage Pharmaceuticals terminated them,” the statement from Heritage said. “We are deeply disappointed by the misconduct and are committed to ensuring it does not happen again.”
Minnesota’s Swanson noted that some information in the complaint has been blacked out at the request of government officials. Eventually, though, Swanson said she wants all of the allegations’ details made public.
“I’m committed to try to see this through and have an unredacted copy of this complaint eventually get filed so people can see just what’s in all of these text messages an emails and what was occurring,” said Swanson. “I think that’s important.”
The investigation has uncovered a hidden side of the generic pharmaceutical industry, said Michael Carrier, a professor at Rutgers Law School who specializes in antitrust law in the drug industry. “It’s a bombshell,” he said.
The charges should prevent generic drugmakers from dramatically raising prices in the near future, Carrier predicted.
“These sorts of charges can filter out over months if not years,” Carrier said. Based on the complaint, he said, “it’s not just two bad apples acting alone.”
The victims of the alleged price fixing include both consumers and taxpayers, who support government insurance programs, the complaint said.
“Many Mainers rely on lower-cost generic prescription drugs in order to make ends meet,” said Mills.
The price fixing charges have surprised even pharmaceutical industry experts.
“There are some economic experts who have suspected that there is some tacit collusion among brand-name drugmakers not to lower drug prices,” said Dr. Hagop M. Kantarjian, chair of the department of leukemia at the University of Texas MD Anderson Cancer Center, who has analyzed the strategies brand-name drugmakers use to keep their products out of the generic market. “But nobody has thought that possibly the generic companies could be potentially colluding to develop monopolistic prices.”
Kantarjian called for stiff penalties that drugmakers can’t write off as the cost of doing business. “If they’re guilty, they should be penalized in a deterrent fashion,” he said.
Goldman said drugs that have been used for years and cost pennies to make shouldn’t be regarded as ordinary consumer products.
“They should be thought of like electricity or something we all need,” Goldman said. “In electricity, we take the view that there is a safe and steady supply and we provide a fair return to the manufacturers.”
Sen. Bernie Sanders, I-Vt., and Rep. Elijah Cummings, D-Md., had asked Heritage for details about doxycycline’s price increase in 2014. In a letter to the company released Friday, they noted that Heritage never sent the information. When asked about the drug’s price increase, an attorney for Heritage told Cummings and Sanders that “Heritage has not seen any significant price increases” for doxycycline in the U.S.
In their new letter, Sanders and Cummings said Heritage’s 2014 statement now seems “disingenuous at best” and repeated their request for information about doxycycline’s sales and pricing.
The Affordable Care Act of course affected premiums and insurance purchasing. It guaranteed people with pre-existing conditions could buy health coverage and allowed children to stay on parents’ plans until age 26. But the roughly 2,000-page bill also included a host of other provisions that affect the health-related choices of nearly every American.
Some of these measures are evident every day. Some enjoy broad support, even though people often don’t always realize they spring from the statute.
In other words, the outcome of the repeal-and-replace debate could affect more than you might think, depending on exactly how the GOP congressional majority pursues its goal to do away with Obamacare.
No one knows how far the effort will reach, but here’s a sampling of sleeper provisions that could land on the cutting-room floor:
CALORIE COUNTS AT RESTAURANTS AND FAST FOOD CHAINS
Feeling hungry? The law tries to give you more information about what that burger or muffin will cost you in terms of calories, part of an effort to combat the ongoing obesity epidemic. Under the ACA, most restaurants and fast food chains with at least 20 stores must post calorie counts of their menu items. Several states, including New York, already had similar rules before the law. Although there was some pushback, the rule had industry support, possibly because posting calories was seen as less onerous than such things as taxes on sugary foods or beverages. The final rule went into effect in December after a one-year delay. One thing that is still unclear: Does simply seeing that a particular muffin has more than 400 calories cause consumers to choose carrot sticks instead? Results are mixed. One large meta-analysis done before the law went into effect didn’t show a significant reduction in calorie consumption, although the authors concluded that menu labeling is “a relatively low-cost education strategy that may lead consumers to purchase slightly fewer calories.”
PRIVACY PLEASE: WORKPLACE REQUIREMENTS FOR BREAST-FEEDING ROOMS
Breast feeding, but going back to work? The law requires employers to provide women break time to express milk for up to a year after giving birth and provide someplace — other than a bathroom — to do so in private. In addition, most health plans must offerbreastfeeding support and equipment, such as pumps, without a patient co-payment.
LIMITS ON SURPRISE MEDICAL COSTS FROM HOSPITAL EMERGENCY ROOM VISITS
If you find yourself in an emergency room, short on cash, uninsured or not sure if your insurance covers costs at that hospital, the law provides some limited assistance. If you are in a hospital that is not part of your insurer’s network, the Affordable Care Act requires all health plans to charge consumers the same co-payments or co-insurance for out-of-network emergency care as they do for hospitals within their networks. Still, the hospital could “balance bill” you for its costs — including ER care — that exceed what your insurer reimburses it.
If it’s a non-profit hospital — and about 78 percent of all hospitals are — the law requires it to post online a written financial assistance policy, spelling out whether it offers free or discounted care and the eligibility requirements for such programs. While not prescribing any particular set of eligibility requirements, the law requires hospitals to charge lower rates to patients who are eligible for their financial assistance programs. That’s compared with their gross charges, also known as chargemaster rates.
NONPROFIT HOSPITALS’ COMMUNITY HEALTH ASSESSMENTS
The health law also requires non-profit hospitals to justify the billions of dollars in tax exemptions they receive by demonstrating how they go about trying to improve the health of the community around them.
Every three years, these hospitals have to perform a community needs assessment for the area the hospital serves. They also have to develop — and update annually — strategies to meet these needs. The hospitals then must provide documentation as part of their annual reporting to the Internal Revenue Service. Failure to comply could leave them liable for a $50,000 penalty.
A WOMAN’S RIGHT TO CHOOSE … HER OB/GYN
Most insurance plans must allow women to seek care from an obstetrician/gynecologist without having to get a referral from a primary care physician. While the majority of states already had such protections in place, those laws did not apply to self-insured plans, which are often offered by large employers. The health law extended the rules to all new plans. Proponents say direct access makes it easier for women to seek not only reproductive health care, but also related screenings for such things as high blood pressure or cholesterol.
AND WHAT ABOUT THOSE THERAPY COVERAGE ASSURANCES FOR FAMILIES WHO HAVE KIDS WITH AUTISM?
Advocates for children with autism and people with degenerative diseases argued that many insurance plans did not provide care their families needed. That’s because insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such speech therapy for a child who never learned how to talk, or to maintain a patient’s current level of function. The law requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups.
Abra and Matt Schultz, both 32, recently built a house in a middle-class neighborhood in Pottsville, Pa. Matt works as a carpenter foreman for a construction company. He and Abra, his wife, are right in Trump’s wheelhouse — Republicans in Republican Schuylkill County.
The couple spent December trying to decide whether to buy health insurance or skip it for 2017. They voted for Trump because they were fed up with how much they are paying for health insurance.
In mid-December in the couple’s kitchen, Abra was sizing up their health insurance options. She showed off a thick notebook, along with a file folder with policy documents and notes piled as high as a stack of pancakes. “Don’t touch my paperwork — don’t even try to touch it,” Abra joked to Matt. “I get so stressed out about it. I’ll not pick one until the very last minute, like that deadline day.”
Matt makes good money, but he usually gets laid off in the winter when construction slows down. For the past few years, he and Abra have bought coverage on Healthcare.gov, the Affordable Care Act exchange.
But they’re in a tough spot. They make too much money to get a subsidy to help them pay for insurance. Subsidies are available only to those who make under 400 percent of poverty, or about $97,000 for a family of four. But while the Schultzes don’t qualify for help, paying full price for health insurance stretches their budget to the limit.
Two years ago, when they first signed up for insurance on the exchange, they were paying $530 a month for a plan they liked, Abra says. The price rose a little for 2016, but the options for 2017 went up a lot — about 30 percent on average in Pennsylvania.
“We have one for $881, one for $938, one for $984, like the deductibles are — look, these are insane,” Abra said, as she checked the exchange website for monthly premiums. “The one that we would be stuck with would be the silver. This is $881.50, and our deductible would be $7,000.”
It’s frustrating, she said, because she and her husband are relatively healthy and haven’t needed that much care. Add to that the cost of a separate partially subsidized insurance policy for their two children, and the family is expecting to pay at least $14,000 in health premiums.
Abra resented the mandate to buy health insurance from the beginning. And she liked what Trump said about the Affordable Care Act on campaign stops, like one in King of Prussia in November, just before the election.
“Obamacare has to be replaced, and we will do it and we will do it very, very quickly,” Trump said in his speech. “It is a catastrophe.”
Abra said she wouldn’t mind being in health insurance limbo while Trump and lawmakers debate the future of Obamacare.
Larry Levitt, with the Kaiser Family Foundation, said he understands her frustration with the law. “These are people who are playing by the rules, and doing the right thing, and they feel like they’re getting the shaft,” he said. (KHN is an editorially independent program of the foundation.)
No one likes higher and higher premiums, he said, but there’s a trade-off. “Before the ACA, to get insurance on your own, you had to fill out a medical questionnaire, and an insurer would only take you if you were reasonably healthy,” Levitt said. “That kept premiums down, but it’s because sick people were excluded from the market altogether.”
Levitt said the law’s goal was to to get insurance to a point where premiums only increase slightly every year while everyone can still get coverage, no matter their pre-existing condition. And, he says, any replacement plan devised by Republicans will have upsides and downsides, just like the Affordable Care Act. “If this were easy, it already would have happened,” he said.
Abra said she understands the broader picture, but she needs to focus on what’s best for her family — affordable health insurance.
“[Trump] just wants to fix what needs to be fixed, which I think is wonderful news,” she said.
Abra did decide on a policy for her and her husband — she selected the plan that costs $938 a month because she wants to keep her current doctor. But if lawmakers eliminate the penalty for people who don’t get insurance, she might take a risk and drop the coverage.