"I'm not anti-hospice at all," said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother.
"But I think people aren't prepared for all the effort that it takes to give someone a good death at home."
Surveys show dying at home is what most Americans say they want. But it's "not all it's cracked up to be," said Johnston, a caregiver advocate and writer from Atlanta.
She wrote an essay about her frustrations with the way hospice care often works in the United States. Johnston, like many family caregivers, was surprised that her mother's hospice provider left most of the physical work to her. She said that during the final weeks of her mother's life, she felt more like a tired nurse than a devoted daughter.
Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.
According to a recent Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to die at home. And that's the direction the health care system is moving, as part of an effort to avoid unnecessary and expensive treatment at the end of life. (Kaiser Health News is an editorially independent program of the foundation.)
The home hospice movement has been great for patients and many patients are thrilled with the care they get, said Dr. Parul Goyal, a palliative care physician with Vanderbilt Health.
"I do think that when they are at home, they are in a peaceful environment," Goyal said. "It is comfortable for them. But," she noted, "it may not be comfortable for family members watching them taking their last breath."
When it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and amajority of Medicare patients are turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.
Hospice care is usually offered in the home, or sometimes in a nursing home. Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.
According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care. For example, one intimate task in particular — trying to get her mom's bowels moving — changed Joy Johnston's view of what hospice really means. Constipation plagues many dying patients.
"It's ironically called the 'comfort care kit' that you get with home hospice. They include suppositories, and so I had to do that," she said. "That was the lowest point. And I'm sure it was the lowest point for my mother as well. And it didn't work."
Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they've hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, said Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.
"Imagine if you're the caregiver, and that you're in the house," Teno said. "It's in the middle of the night, 2 o'clock in the morning, and all of a sudden, your family member has a grand mal seizure."
That's exactly what happened with Teno's mother.
"While it was difficult for me to witness, I knew what to do," she said.
In contrast, Teno said, in her father's final hours, he was admitted to a hospice residence.
Such residences often resemble a nursing home, with private rooms where family and friends can come and go and with round-the-clock medical attention just down the hall.
Teno called the residence experience of hospice a "godsend." But an inpatient facility is rarely an option, she said. Patients have to be in bad shape for Medicare to pay the higher inpatient rate that hospice residences charge. And by the time such patients reach their final days, it's often too much trouble for them and the family to move.
Hospice care is a lucrative business. It is now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren't building dedicated hospice units or residences, in general — mostly because such facilities aren't profitable enough.
Joe Shega is chief medical officer at the for-profit VITAS Healthcare, the largest hospice company in the U.S. He insists it is the patients' wishes, not a corporate desire to make more money, that drives his firm's business model.
"Our focus is on what patients want, and 85 to 90% want to be at home," Shega said. "So, our focus is building programs that help them be there."
For many families, making hospice work at home means hiring extra help.
'I Guess I've Just Accepted What's Available'
On the day I visit her home outside Nashville, hospice patient Jean McCasland is at the kitchen table refusing to eat a spoonful of peach yogurt. Each morning, nurse's aide Karrie Velez pulverizes McCasland's medications in a pill crusher and mixes them into her breakfast yogurt.
"If you don't, she will just spit them out," Velez said.
Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get a break each day. When Velez is not around, John McCasland — Jean's husband of nearly 50 years — is the person in charge at home.
"I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able," John said.
But what hospice provided wasn't enough help. So he has had to drain the couple's retirement accounts to hire Velez, a private caregiver, out-of-pocket.
Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce. According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient's home 30 minutes, or so, per day.
Jean McCasland's husband hasn't complained. "I guess I've just accepted what's available and not really thought beyond what could be," he said. "Because this is what they say they do."
Families often don't consider whether they're getting their money's worth because they're not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he had never noticed that his agency charges nearly $200 a day, whether there is a health provider in the home that day or not.
That daily reimbursement covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John said it gives him peace of mind that help is a phone call away. "There's a sense of comfort in knowing that they are keeping an eye on her," he said.
The rate that hospice charges Medicare drops a bit after the patient's first two months on the benefit. After reviewing his paperwork, John realized Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice.
Was the care his wife got worth that?
"When you consider the amount of money that's involved, perhaps they would provide somebody around the clock," he said.
Sue Riggle is the administrator for the McCaslands' hospice agency and said she understands how much help patients with dementia need. Her company is a small for-profit business called Adoration; she said the agency can't provide more services than what Medicare pays for.
"I think everybody wishes we could provide the sitter-service part of it," said Riggle. "But it's not something that is covered by hospices."
I checked in with John and Velez (Jean's longtime private caregiver) this winter. The two were by Jean's side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.
This experience of family caregivers is typical but often unexpected.
'It's A Burden I Lovingly Did'
"It does take a toll" on families, said Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients' lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.
"Our long-term-care system in this country is really using families — unpaid family members," she said. "That's our situation."
A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to want something else for themselves.
Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tennessee. He died of prostate cancer in their bedroom in 1993. Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she said.
But it was a burden.
"For me to say that — there's that guilt," she said. "But I know better. It was a burden that I lovingly did."
She doesn't regret the experience but said it is not one she wishes for her own grown children. She recently sat them down, she said, to make sure they handle her death differently.
"I told my family, if there is such a thing, I will come back and I will haunt you," she said with a laugh. "Don't you do that."
Sea's family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home or dying with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid. As researchers in the field look to the future, they are calling for more palliative care, not less — and, at the same time, they are advocating for more support for the spouses, family members and friends tasked with caring for the patient.
"We really have to expand — in general — our approach to supporting caregivers," Ornstein said, noting that some countries outside the U.S. pay for a wider range and longer duration of home health services.
"I think what we really need to do is be broadening the support that individuals and families can have as they're caring for individuals throughout the course of serious illness," Ornstein said.
"And I think that probably speaks to the expansion of palliative care, in general."
This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.
Medical professionals have been storing personal health information in electronic form for more than a decade, but it is cumbersome for patients to gather disparate computer and paper records scattered across doctors' offices, hospitals and medical labs.
Wouldn't life be easier if you could view your full medical history with a few taps on your smartphone?
The consolidation of medical records may be on its way, as technology companies prod the health care industry to embrace an internet-based common standard for storing and sharing patient information. It's known as FHIR and pronounced "fire" — a catchier way of saying Fast Healthcare Interoperability Resources.
Industry analysts say the rapidly growing demand for freer exchange of health care information is creating an electronic health record market estimated to reach $38 billion by 2025. With numbers like that bandied about, it should come as no surprise that Silicon Valley tech giants Apple and Google are lining up for a slice of the pie — as are other technology behemoths, including Amazon and Microsoft. Those corporations, and many smaller companies and startups, offer FHIR-based apps and services to consumers and health industry professionals.
The idea behind FHIR is to share specific pieces of information, such as symptoms, procedures or diagnoses, without passing along entire documents. Each discrete chunk of data has a unique identifier, which makes it possible for patients, doctors and researchers to get the information they need on any device or browser, regardless of where the data is stored.
Proponents of the new standard say it should ensure that health care information can be exchanged seamlessly among providers across the industry — from a urine-testing laboratory in Los Angeles, for example, to a pediatrician in Redding, California.
When tech companies can agree to use an industry standard, the adoption of new technology accelerates: Think Bluetooth or USB. It's a confusing tangle when that doesn't happen: Think laptop power cords.
Adoption of the medical record-sharing standard may begin to accelerate with the rollout of a new federal rule this year requiring health care providers that receive payments from the U.S. government — Medicare and Medicaid — to use FHIR-compatible apps for patient data.
FHIR has met considerable resistance, however. Until recently, there were few business incentives and limited advocacy by health care providers to create the necessary demand for FHIR's adoption, said Micky Tripathi, chairperson of the advisory council of Health Level Seven International, a not-for-profit developer of electronic health information standards that created FHIR.
"Change will come incrementally over time, not overnight," Tripathi said. "The older standards, though inferior, have the advantage that they are in use today and the cost of ripping and replacing them is not worth the added benefit."
Some hospitals and medical clinics put the brakes on the very concept of data sharing by engaging in "information blocking" in an effort to retain patients. In 2016, Congress enacted financial penalties to stop them from doing so, but their resistance has not been eliminated.
"There have been roadblocks that prevent innovations and data from being widely shared where it could benefit patients," said Julia Adler-Milstein, director of the Center for Clinical Informatics and Improvement Research at the University of California-San Francisco.
Beyond its potential to revolutionize medical records requests, FHIR may also provide the first reliable gateway for patient-generated health information from millions of smartwatches, fitness trackers and blood pressure monitors to merge with clinical data in doctors' offices, people in the industry say.
The need for a standard arose fromthe incompatibility of electronic health records at medical sites ranging from hospitals and doctors' offices to urgent care clinics and nursing homes.
Digitizing health records was intended to clean up the chaos of paper-based medical histories, allowing information to be shared more readily. But many practitioners still rely on paper, and among those who have made the digital switch, medical records often lie isolated in electronic silos.
In 2014, Health Level Seven International proposed leveraging how the internet works to break open the silos. FHIR evolved quickly, creating what its product director, Grahame Grieve, calls a "public treasure" of international health information exchange.
At UCSF, FHIR is being used in a study to track the weight of newborns hour-by-hour. UCSF's Healthy Start program integrates weight data with other information about each newborn to alert doctors when one of them may be struggling.
Established medical technology companies and a host of startups are salivating over FHIR, because eventually it could give them paths to lucrative uses of data, including for personalized medicine, population health and medical genetics as well as in emerging technologies such as machine learning and artificial intelligence.
"We want to have FHIR in our analytics and machine-learning tools," Aashima Gupta, Google Cloud's director of Global Healthcare Solutions, said at a conference in Orlando, Florida, in February.
Tech giants are already striving to benefit from the growing use of FHIR:
Microsoft recently releasedFHIR Server for Azure, its data-on-demand offering, to attract health care clients to its cloud services.
Google joined with the American Medical Association in an effort to improve coordination among health care systems with FHIR and develop methods of collecting and managing patient-generated health data.
Apple's Health Records app uses FHIR to let consumers download data from their health care providers.
Amazon Comprehend Medical works through Amazon Web Services to offer guidance for health care data specialists using FHIR.
Six big tech companies — Microsoft, Google, Amazon, IBM, Oracle and Salesforce — have also joined to support FHIR and broader sharing of health care data through a government-endorsed project calledBlue Button, which is intended to make it easier for patients to view and download their health records.
Consumer advocates and cybersecurity experts warn that personal health information shared on the web could be compromised. They want to make sure the risk is minimized before any widespread rollout of FHIR products. Patients do not have a say in how their health providers store medical information, but patients can request their records be sent in the format they prefer, including paper.
Facilitating access to all that data for both patients and providers without first determining how to keep it secure may open a Pandora's box that can never be shut, warned David Finn, executive vice president of strategic innovation for CynergisTek, a Mission Viejo, California, and Austin, Texas-based cybersecurity consulting firm.
"We have to change the way we think about data. It is our most valuable asset. But we have not adjusted our thinking about data to how the bad guys think of it," Finn said. "Until we think about what you could do maliciously with that information, I'm afraid we will not catch up with them."
California is known for progressive everything, including its health care policies, and, just a few weeks into 2020, state leaders aren't disappointing.
The politicians' health care bills and budget initiatives are heavy on ideas and dollars — and on opposition from powerful industries. They put California, once again, at the forefront.
The proposals would lower prescription drug costs, increase access to health coverage, and restrict and tax vaping. But most lawmakers agree that homelessness will dominate the agenda, including proposals to get people into housing while treating some accompanying physical and mental health problems.
"This budget doubles down on the war on unaffordability — from taking on health care costs and having the state produce our own generic drugs to expanding the use of state properties to build housing quickly," Gov. Gavin Newsom said in a letter to the legislature, which accompanied the $222.2 billion budget proposal he unveiled last Friday. About a third of that money would be allocated to health and human services programs.
But even with a Democratic supermajority in the legislature, these proposals aren't a slam-dunk. "There are other factors that come into play, like interest groups with strong presence in the Capitol," including Big Pharma and hospitals, said Shannon McConville, a senior researcher at the nonpartisan Public Policy Institute of California.
Newsom's plan to create a state generic drug label is perhaps his boldest health care proposal in this year's budget, as it would make California the first state to enter the drug-manufacturing business. It may also be his least concrete.
Newsom wants the state to contract with one or more generics manufacturers to make drugs that would be available to Californians at lower prices. Newsom's office provided little detail about how this would work or which drugs would be produced. The plan's cost and potential savings are also unspecified. (Sen. Elizabeth Warren of Massachusetts, who is seeking the Democratic presidential nomination, proposed a similar plan at the federal level.)
Because the generics market is already competitive and generic drugs make up a small portion of overall drug spending, a state generic-drug offering would likely result in only modest savings, said Geoffrey Joyce, director of health policy at USC's Leonard D. Schaeffer Center for Health Policy & Economics.
However, it could make a difference for specific drugs such as insulin, he said, which nearly doubled in price from 2012 to 2016. "It would reduce that type of price gouging," he said.
Representatives of Big Pharma said they're more concerned about a Newsom proposal to establish a single market for drug pricing in the state. Under this system, drug manufacturers would have to bid to sell their medications in California, and would have to offer prices at or below prices offered to any other state or country.
Californians could lose access to existing treatments and groundbreaking drugs, warned Priscilla VanderVeer, vice president for the Pharmaceutical Research and Manufacturers of America, the industry's lobbying arm.
This proposal could "let the government decide what drugs patients are going to get," she said. "When the governor sets an artificially low price for drugs, that means there will be less money to invest in innovation."
Newsom's drug pricing proposals build on his executive order from last year directing the state to negotiate drug prices for the roughly 13 million enrollees of Medi-Cal, the state's Medicaid program for low-income residents. He also ordered a study of how state agencies could band together — and, eventually, with private purchasers such as health plans — to buy prescription drugs in bulk.
Homelessness
California has the largest homeless population in the nation, estimated at more than 151,000 people in 2019, according to the U.S. Department of Housing and Urban Development. About 72% of the state's homeless slept outside or in cars rather than in shelters or temporary housing.
Newsom has asked for $1.4 billion in the 2020-21 state budget for homelessness, most of which would go to housing and health care. For instance, $695 million would boost health care and social services for homeless people via Medi-Cal. The money would fund programs such as recuperative care for homeless people who need a place to stay after they've been discharged from the hospital, and rental assistance if a person's homelessness is tied to high medical costs.
A separate infusion of $24.6 million would go to the Department of State Hospitals for a pilot program to keep some people with mental health needs out of state hospitals and in community programs and housing.
Surprise Bills
California has some of the strongest protections against surprise medical bills in the nation, but millions of residents remain vulnerable to exorbitant charges because the laws don't cover all insurance plans.
Surprise billing occurs when a patient receives care from a hospital or provider outside of their insurance network, and then the doctor or hospital bills the patient for the amount insurance didn't cover.
Last year, state Assembly member David Chiu (D-San Francisco) introduced legislation that would have limited how much hospitals could charge privately insured patients for out-of-network emergency services. The bill would have required hospitals to work directly with health plans on billing, leaving the patients responsible only for their in-network copayments, coinsurance and deductibles.
But he pulled the measure because of strong opposition from hospitals, which criticized it as a form of rate setting.
Chiu said he plans to resume the fight this year, likely with amendments that have not been finalized. But hospitals remain opposed to the provision that would cap charges, a provision that Chiu says is essential.
"We continue to fully support banning surprise medical bills, but we believe it can be done without resorting to rate setting," said Jan Emerson-Shea, a spokesperson for the California Hospital Association.
Medi-Cal For Unauthorized Immigrants
California is the first state to offer full Medicaid benefits to income-eligible residents up to age 26, regardless of their immigration status.
Now Democrats are proposing another first: California could become the first to open Medicaid to adults ages 65 and up who are in the country illegally.
Even though Medicaid is a joint state-federal program, California must fund full coverage of unauthorized immigrants on its own.
Newsom set aside $80.5 million in his 2020-21 proposed budget to cover about 27,000 older adults in the first year. His office estimated ongoing costs would be about $350 million a year.
Republicans vocally oppose such proposals. "Expanding such benefits would make it more difficult to provide health care services for current Medi-Cal enrollees," state Sen. Patricia Bates (R-Laguna Niguel) said in a prepared statement.
But last year, state legislators punted on a statewide ban on flavored tobacco sales after facing pressure from the tobacco industry.
Now, state Sen. Jerry Hill (D-San Mateo) is back with his proposed statewide flavor ban, which may have more momentum this year. Since last summer, a mysterious vaping illness has sickened more than 2,600 people nationwide, leading to 60 deaths, according to the Centers for Disease Control and Prevention. In California, at least 199 people have fallen ill and four have died.
Hill's bill would ban retail sales of flavored products related to electronic cigarettes, e-hookahs and e-pipes, including menthol flavor. It also would prohibit the sale of all flavored smokable and nonsmokable tobacco products, such as cigars, cigarillos, pipe tobacco, chewing tobacco, snuff and tobacco edibles.
Newsom has also called for a new tax on e-cigarette products — $2 for each 40 milligrams of nicotine, on top of already existing tobacco taxes on e-cigarettes. The tax would have to be approved by the legislature as part of the budget process and could face heavy industry opposition.
Tobacco-related bills are usually heard in the Assembly Governmental Organization Committee, "and that is where a lot of tobacco legislation, quite frankly, dies," said Assembly member Jim Wood (D-Healdsburg), who supports vaping restrictions.
Charlie Blakey had a sense he was sleeping poorly since he often would wake up tired and hear from his wife how loudly he breathed during the night.
So he jumped at the chance when his employer, Southern Co., an Atlanta-based electric utility, offered to test him in 2018 for sleep apnea, a potentially serious disorder in which people repeatedly stop breathing while asleep.
After he tested positive, the utility arranged for him to have a machine that provides continuous airflow through a mask while he sleeps — at no cost to him. Within weeks, Blakey, of Augusta, Georgia, noticed a difference.
"Without a doubt, it's helped me feel more refreshed when I get up," said Blakey, 38, a safety and health specialist at the company.
About 4,000 of Southern's 30,000 employees have been screened for sleep apnea in the past three years, and 1,500 are being treated. Southern officials said the program is saving money on health costs — $1.2 million in 2018 alone — because it reduces medical services for dangerous conditions such as heart disease that are complicated by sleep apnea.
Sleep is the latest in an ever-growing list of wellness issues — such as weight loss, exercise and nutrition — that firms are targeting to improve workers' health and lower medical costs.
Whether all these sleep programs deliver on their promises is not yet clear. A study published last year in the Journal of the American Medical Association followed nearly 33,000 employees of BJ's Wholesale Club for 18 months and found the wellness program did not lead to significant reductionsin health spending.
Harry Liu, a researcher at the Rand Corp. who studies job-based wellness initiatives, said that while studies show "improving sleeping habits can reduce absenteeism and improve productivity," it's uncertain if employers' efforts will have long-term effects for individual workers.
A study published by researchers at the University of Minnesota, Harvard Medical School and other institutions in October found that 1,200 commercial truck drivers who participated in an employer sleep apnea screening and treatment program saved an average of $441 per month in health costs compared with drivers who were not treated. An earlier study of members of a health plan serving Union Pacific employees also found overall health savings among workers who were diagnosed with sleep apnea and got treatment.
About 1 in 4 large employers offer programs to help workers get better sleep and more than half plan to implement such efforts by 2021, according to a 2019 survey by benefits firm Willis Towers Watson. Most businesses hire contractors to manage the programs.
Benefits officials say promoting a good night's sleep for employees is as important as making sure their blood sugar and cholesterol are under control.
Despite the public's concerns about privacy, employers say workers have been eager to reveal information about how they sleep to company vendors. To protect employees' medical privacy, the data on individual workers does not go to their bosses; companies receive only aggregated data to measure program spending and effectiveness.
Katie Kirkland, director of benefits at Southern, said a lack of sleep may promote an unhealthy lifestyle of not exercising or eating a poor diet.
In addition to reducing medical costs, the company was motivated to offer its program because state transportation department rules require that some employees who operate heavy equipment and have certain health conditions be tested for sleep apnea and get treated if diagnosed.
With a diagnosis of apnea, a patient is typically prescribed a continuous positive airway pressure (CPAP) machine. But Kirkland said many workers needed help sustaining treatment because of difficulties in learning to sleep with a mask.
"With sleep apnea, there is a high drop-off rate, where you pay a lot for the equipment and then it doesn't get used," she said. "We found it's a much better experience with the personal coaching."
When the company took on the issue, it made sense to offer the help to its entire labor force, Kirkland added.
Beyond sleep apnea, some employers also help workers with insomnia.
The Hartford Financial Services Group, based in Hartford, Connecticut, contracts with London-based Sleepio to offer employees a sleep questionnaire and online tutorial to deal with specific sleep issues.
Sandra Trisdale, a sales consultant with the company in San Diego, said she's sleeping better after finishing a six-week online course on how to fall asleep faster.
Tips Trisdale used include room-darkening window shades and getting a noise machine to drown out other noises. She also learned the importance of trying to go to sleep and wake up at the same time each day. The program had her keep a diary to track how the changes she made affected her sleep.
"It was tremendously helpful," Trisdale said, "and I got to see how making some small changes led to some big results."
According to the Hartford, the 2,000 workers who completed its six-week education program have gained an average of seven hours of sleep per week.
Judy Gordon, wellness director at the company, said a preliminary analysis suggests the sleep program is saving the company money through fewer medical claims.
The company began looking into sleep issues after it found employees with an insomnia diagnosis have more than double the average health costs of those without one. In addition, she said, employees who sleep better are likely to be more productive at work.
"There is a business reason to look at insomnia," Gordon said.
Case Western Reserve University in Cleveland also recently began working with its employees on sleep. About 185 workers took part in a voluntary four-week program last year that provided sleeping tips and asked employees to keep a record of how they slept each night. Claude "Bud" Morris, a maintenance worker, said the program helped by nudging him to turn off electronics an hour before bedtime.
Officials at the Washington Suburban Sanitary Commission, a government agency that provides drinking water for parts of Maryland near the District of Columbia, feared sleep problems were plaguing many of their employees who often work late nights or early mornings. When they looked over workers' medical and pharmacy claims, they found 226 of 1,600 employees had been diagnosed with sleep apnea and most of them had at least one chronic disease such as asthma or diabetes.
"It wasn't rocket science to tell sleep was an issue," said Lee McDonough, the commission's wellness program manager.
Many of the employees with sleep apnea who had started on a CPAP machine quit using it regularly because of difficulty wearing the mask.
"They would take it and throw it in a corner and not get better," McDonough said.
The commission contracted with FusionHealth of Suwanee, Georgia, which tests employees for sleep apnea and provides doctors and respiratory therapists to counsel individuals on how to wear the mask. The company also monitors employees remotely and follows up with regular phone calls and emails.
After 16 months using the service, the commission found the extra level of personal support helped many employees sleep better.
"The human touch combined with the technology has helped employees stick with it and given them a fighting chance to get better," McDonough said.
CHICAGO — Patients have come to expect a technician to drape their torsos with a heavy lead apron when they get an X-ray, but new thinking among radiologists and medical physicists is upending the decades-old practice of shielding patients from radiation.
Some hospitals are ditching the ritual of covering reproductive organs and fetuses during imaging exams after prominent medical and scientific groups have said it's a feel-good measure that can impair the quality of diagnostic tests and sometimes inadvertently increase a patient's radiation exposure.
The about-face is intended to improve care, but it will require a major effort to reassure regulators, health care workers and the public that it's better not to shield.
Fear of radiation is entrenched in the collective psyche, and many people are surprised to learn that shielding can cause problems. The movement also has yet to gain much traction among dentists, whose offices perform more than half of all X-rays.
"There's this big psychological component, not only with patients but with staff," said Rebecca Marsh, a medical physicist at the University of Colorado Anschutz Medical Campus in Aurora, Colorado, who spoke about shielding at a December forum here at the annual meeting of the Radiological Society of North America. "How do you approach something that is so deeply ingrained in the minds of the health care community and the minds of patients?"
Covering testicles and ovaries during X-rays has been recommended since the 1950s, when studies in fruit flies prompted concern that radiation might damage human DNA and cause birth defects. Only in the past decade did radiology professionals start to reassess the practice, based on changes in imaging technology and a better understanding of radiation's effects.
Lead shields are difficult to position accurately, so they often miss the target area they are supposed to protect. Even when in the right place, they can inadvertently obscure areas of the body a doctor needs to see — the location of a swallowed object, say — resulting in a need to repeat the imaging process, according to the American Association of Physicists in Medicine, which represents physicists who work in hospitals.
Shields can also cause automatic exposure controls on an X-ray machine to increase radiation to all parts of the body being examined in an effort to "see through" the lead.
Moreover, shielding doesn't protect against the greatest radiation effect: "scatter," which occurs when radiation ricochets inside the body, including under the shield, and eventually deposits its energy in tissues.
Still, Dr. Cynthia Rigsby, a radiologist at Chicago's Ann & Robert H. Lurie Children's Hospital, called the move away from shielding a "pretty substantial" change. "I don't think it's going to happen overnight," she added.
Sweeping Shift
In April, the physicists' association recommended that shielding of patients be "discontinued as routine practice." Its statement was endorsed by several groups, including the American College of Radiology and the Image Gently Alliance, which promotes safe pediatric imaging.
Around the same time, the Food and Drug Administration proposedremoving from the federal code a 1970s recommendation to use shielding. A final rule is expected in September.
However, experts continue to recommend that health care workers in the imaging area protect themselves with leaded barriers as a matter of occupational safety.
Groups in Canada and Australia have endorsed the change, and a movement to abandon lead shields is underway in Great Britain, according to Marsh.
Marsh, who's helping direct the educational effort, said perhaps a dozen U.S. hospitals have changed their official policies, but "most hospitals are starting to have the conversation."
Chicago's Lurie hospital is launching an "Abandon the Shield" campaign to educate staff, patients and caregivers before it stops shielding across the organization this spring, Rigsby said. Shielding is used for most of the 70,000 X-ray procedures performed annually at Lurie in a variety of settings, from orthopedics to the emergency department.
A few miles away, at the University of Chicago Medicine hospitals, the recommendation to stop shielding "came as kind of a shock," said Dr. Kate Feinstein, chief of pediatric radiology.
Feinstein said it seems contrary to what radiology professionals are taught, and she's uncertain how it applies to her department, which already takes steps to reduce the chance that a shield will interfere with an exam. "We apply our shields correctly, and our technologists are incredibly well trained," she said.
Nevertheless, Feinstein said, her department is weighing a halt to routine shielding.
Some hospitals are concerned about violating state regulations. As of last spring, at least 46 states, including Illinois, required shielding of reproductive organs if they are close to the area being examined, unless shielding would interfere with the diagnostic quality of the exam, according to the medical physicists' association.
Some states are revising their regulations. In some cases, hospitals have applied for waivers or sidestepped state rules by taking the stance that a shield has the potential to affect diagnostic quality anytime it is used, Marsh said.
No Evidence Of Benefit
The amount of radiation needed for an X-ray is about one-twentieth of what it was in the 1950s, and scientists have found no measurable harm to ovaries and testicles of patients from radiation exposure that comes from diagnostic imaging after decades of looking at data.
"What we know now is that there is likely no [hereditary] risk at all," said Dr. Donald Frush, a radiologist at Lucile Packard Children's Hospital Stanford in Palo Alto, California, who chairs the Image Gently Alliance.
There's also no evidence that fetuses are harmed by even a relatively high amount of radiation exposure, such as that from a CT scan of the abdomen, Marsh said.
Nevertheless, some patients may insist on shielding. The physicists' group suggested that when hospitals craft their policies they consider that shielding may "calm and comfort."
"I don't think any of us are advocating to never use it," Frush said.
A Need For Outreach
Public confusion might develop if dentists continue to shield while hospitals don't. An estimated 275 million medical X-ray exams were performed in the U.S. in 2016, but 320 million dental X-rays were done.
Mahadevappa Mahesh, the chief physicist at Johns Hopkins Hospital, said there's been less outreach to dentists on the topic. "It's high time we bring them into the discussion," he said.
The American Dental Association states abdominal shielding "may not be necessary" but has continued to recommend using lead collars to shield the thyroid "whenever possible."
But Mahesh, who's on the board of the physicists' association, cautioned that lead collars to protect the thyroid may not be helpful and could obscure images taken by newer 3D dental imaging machines.
Contacted for a response, the dental association said its guidance on shielding is under review.
Technologists especially will need support in educating patients and families "so they are not feeling like they are walking into a disastrous conversation," said Marsh, the medical physicist.
She is doing her part. At the radiology conference, Marsh strummed a banjo and sang her version of the Woody Guthrie ballad "So Long, It's Been Good to Know Yuh," with lyrics like: "To get rid of shielding at first may seem strange, but the time is upon us to embrace this change."
Kathleen Hoechlin lost control as she crested a small jump on her final ski run of the day at California's Mammoth Mountain two years ago. She landed hard on her back, crushing one of the vertebra in her lower spine "like a Cheerio," she said.
An air ambulance flew Hoechlin, then 32, to an airport near Loma Linda University Medical Center in Southern California's Inland Empire. There she underwent emergency 12-hour surgery to remove bone fragments and replace the crushed vertebra with a metal cage that was fused to the rest of her spine with rods and screws to provide structure and stability.
Hoechlin was still in intensive care when her husband, Matt, got the bill for the 300-mile air ambulance ride. The total: $97,269. The company wasn't in their health plan's network of providers, and the PPO plan they had through Matt's job agreed to pay just $17,569.
The Hoechlins were on the hook for the $79,700 balance.
"It was just shocking," said Hoechlin, who worked as a business analyst project manager in Highland, California. "I was just focused on, 'Am I going to be able to walk again?' I thought I was going to have a heart attack when he told me."
A California law that took effect Jan. 1 aims to protect consumers from such enormous bills for out-of-network air ambulance services. The measure limits what consumers owe if they're transported by an air ambulance that's not part of their insurance network to the amount that they'd be charged if they used an in-network provider. The health plan and the air ambulance provider must then work out payment between themselves.
But the new law won't protect consumers like Hoechlin, whose health plan isn't regulated by the state. Matt's employer pays its workers' medical claims directly rather than buying state-regulated insurance, a common arrangement called "self-funding." Self-funded plans are regulated by the federal government and generally not subject to state health insurance laws.
In this regard, the new air ambulance law is like laws in California and other states that protect consumers from surprise medical bills: They don't apply to residents in federally regulated health plans. Those plans cover about two-thirds of people who get insurance through their jobs nationwide.
Federal legislation is the best solution for those consumers, experts say. One of the leading bills before Congress to address surprise medical bills includes air ambulance charges. But that, and other measures, are up in the air, although members of Congress say they are working to reach an accord this year.
Another legal wrinkle affects even consumers with health plans the state does oversee. Under the federal Airline Deregulation Act of 1978, states aren't permitted to regulate the "rates, routes, or services" of air carriers, including air ambulances. It's unclear whether the California law, which doesn't spell out a payment rate for a health plan, would be preempted by federal law if challenged in court, according to legal experts.
"It's a very big step in balance billing, but it's not a definitive one," said Samuel Chang, a health policy researcher at the Source on Healthcare Price and Competition, a project of the University of California-Hastings.
Although people rarely need to be transported by a helicopter or airplane for medical care, it's often an emergency when they do, and they're unable to shop for an in-network provider, even if their health plan offers one. According to a federal Government Accountability Office analysis of air ambulance private insurance claims, 69% of air ambulance transports were out of network in 2017.
The median price charged in 2017 was $36,400 for a transport by helicopter and $40,600 by plane, according to the report. If an insurer doesn't have a contract with an air ambulance provider, the air ambulance company may bill the consumer for whatever the insurer doesn't pay, a practice known as balance billing.
"The air ambulance issue is such a big deal because it's just such an eye-popping bill," said Yasmin Peled, the policy and legislative advocate at Health Access California, a consumer advocacy group.
Air ambulance providers defend their charges, saying the rates offered by commercial insurance companies barely cover their costs. And public insurance programs often pay even less.
"Seven out of 10 of our transports are Medicare, Medicaid or uninsured," said Doug Flanders, director of communications and government affairs at Air Methods, a large air ambulance company that provides services in 48 states, including California. Medicare pays Air Methods an average of $5,998 per transport, and Medicaid payments are typically half of that, Flanders said via email. That presents a "huge financial challenge," he said.
In recent years, Air Methods has focused on joining the networks of some major insurers, including Blue Shield of California and Anthem Blue Cross of California, Flanders said. In addition to protecting patients, being in network "stabilizes operations and eases the administrative burden of the claims processing procedures created by insurers," he said.
For the past several years, reimbursements by Medi-Cal, the state's Medicaid program, for air ambulance services have been bolstered by funds collected from penalties for traffic violations. But the penalty was slated to sunset in 2020. Under the new California law, the state will extend supplemental funding of Medi-Cal payments for air ambulance services until 2022. Without that agreement, the rates would have reverted to much lower 1993 levels.
With the higher Medi-Cal rates, the industry supported the bill, including the prohibition on balance billing. In fact, the California Association of Air Medical Services sponsored the bill, although it didn't respond to requests for comment.
In contrast, when other states have tried to prohibit air ambulance balance billing, the companies have often successfully challenged those laws on the grounds that the federal Airline Deregulation Act of 1978 prohibits state rate setting, according to Erin Fuse Brown, an associate law professor at Georgia State University who has studied air ambulance billing.
Legal experts say California's approach may thread the needle where other states have failed.
"I do think the state has a pretty tolerable argument here that they are not regulating rates," said Christen Linke Young, a fellow at the USC-Brookings Schaeffer Initiative for Health Policy. "They are telling the air ambulance providers who they can go to to get paid, but they're ultimately not telling the amount that is getting paid."
Kathleen Hoechlin and her husband, who now live in Riverside, California, eventually negotiated the amount they owed down to $20,000, arguing to the air ambulance firm that by tapping their savings and using money from a GoFundMe campaign, that was all they could afford.
She is now able to walk with only a slight limp. But she continues to deal with severe pain due to nerve damage. She recently underwent a fourth surgery to implant a spinal cord stimulator to interrupt the pain signal to her brain.
"When you look at the bigger picture, at the total amount, we're feeling very fortunate," she said.
Kristie Flowers had been sick with the flu for four or five days in July before the 52-year-old registered nurse from Genoa, Colo., acknowledged she needed to go to the ER.
At Lincoln Community Hospital, about 10 miles from her home on the Eastern Plains of Colorado, doctors quickly diagnosed her with pneumonia and sepsis. Her right lung had completely filled with fluid, and Flowers needed much more intensive care than the 15-bed hospital could provide.
Doctors stabilized Flowers and transferred her by ambulance about 80 miles away to St. Francis Medical Center in Colorado Springs. There, doctors put her on a ventilator for 10 days as they slowly nursed her back to health. After two weeks, she returned to Lincoln Community Hospital for another week of rehab before going home.
After her insurance plan had paid its share, Flowers owed $8,000 in medical bills. A big chunk represented the $3,500 deductible from her employer-sponsored health plan. Never one to let the bills pile up, Flowers went to the bank and took out an $8,000 loan to pay off her medical tab.Bottom of Form
Plans with annual deductibles of $3,000, $5,000 or even $10,000 have become commonplace since the implementation of the Affordable Care Act as insurers look for ways to keep monthly premiums to a minimum. But in rural areas, where high-deductible plans are even more prevalent and incomes tend to be lower than in urban areas, patients often struggle to pay those deductibles.
That has hit patients like Flowers hard as they grapple with medical debt when emergencies happen — but small rural hospitals like Lincoln Community are suffering, too. These facilities often stabilize critically ill patients and then transfer them to larger regional or urban hospitals for more definitive care.
But when the hospitals submit their claims, bills from the first site of care generally get applied to a patient's deductible. And if patients can't afford to cover that amount, those hospitals often don't get paid, even as the larger urban hospitals where patients were transferred get close to full payment from the health plan.
"As soon as we send them to the city, those things start being paid by the insurance company," said Kevin Stansbury, CEO of Lincoln Community, "while we're still chasing the patient around for collections."
The result is financial headaches for patients and a substantial rise in the amount of uncollectible "bad debt" written off by all hospitals during the past few years. According to the Healthcare Financial Management Association, hospital bad debt increased by $617 million to nearly $56.5 billion between 2015 and 2018. More hospitals, especially those in rural areas, are left teetering financially.
At least 120 rural hospitals nationwide have shut down in the past decade. Without changes, advocates say, more will close, leaving patients such as Flowers in remote areas far from access to immediate emergency care.
Shopping On Premiums
According to the nonprofit National Rural Health Association, bad debt for rural hospitals has gone up about 50% since the passage of the Affordable Care Act in 2010.
"People in rural America were buying plans maybe for the first time, but buying plans they couldn't afford," said Maggie Elehwany, the group's vice president for government affairs and policy. The plans "seemed to make sense at the time, until they got sick."
Part of the problem is that consumers primarily shop based on monthly premiums, and insurance plans can lower the monthly premiums they charge by increasing deductibles and copays. Some consumers take the gamble that they'll stay healthy and won't get stuck paying the high deductible. But others simply may not understand they are typically responsible for the full deductible before their insurance kicks in to cover the rest of their bills.
In many rural counties, consumers shopping on their state's health insurance exchange had little choice. This year, about 10% of enrollees, living in 25% of counties, many of them heavily rural, will have access to just one insurer in their local Affordable Care Act marketplaces, according to a Kaiser Family Foundation analysis. (KHN is an editorially independent program of the foundation.)
"The exchanges have never worked the way they were envisioned," Elehwany said. "The goal was you go on your computer and it's going to be like buying an airline ticket, and just shopping around for what makes sense for you. There's no shopping in rural America. You have one choice."
In Colorado, for example, the average deductible in 2017 was nearly $5,800 for a bronze-level plan. According to an analysis by the Colorado Center on Law & Policy, 1 in 4 Coloradans would not be able to afford to pay that deductible over the course of a year. The ability to pay was even worse in rural areas.
Mark Holmes, director of the North Carolina Rural Health Research and Policy Analysis Center, said that incomes are generally lower in rural areas than elsewhere, and that higher-income rural residents are more likely to travel to an urban hospital than to stay local. Lower-income rural residents, meanwhile, generally go to their local hospital, he said, but they are less likely to be able to meet a high deductible.
Rural residents are also less likely to be covered by employer-sponsored plans and, therefore, more likely to face high deductibles than their urban counterparts.
"They may never pay us," said Stella Worley, CEO of the 25-bed Keefe Memorial Hospital in Cheyenne Wells, Colo., near the Kansas line. "They get transferred onto high level of care and the other hospital gets paid. We get paid nothing — a lot."
Worley recalled one patient who had been treated and transferred to a larger hospital. Keefe Memorial wrote off $14,000 in total charges. The patient was billed $1,000 for his deductible and never paid it. Eventually, the unpaid bill went to a collection agency, which takes a 30% cut if it ever collects the fee.
For many rural residents, paying a monthly premium and still facing thousands of dollars in out-of-pocket costs can feel like having no insurance at all. As a result, patients avoid seeking primary care services that could solve minor problems before they devolve into major health issues with much higher costs.
"Some of the people I know in our community trying to get insurance for their employees had a $10,000 deductible, which is really catastrophic insurance," said Rob Santilli, CEO of Gunnison Valley Health, in Gunnison, Colo. "It's not going to help them, and it immediately puts them into bad debt with the first instance when they need coverage."
To be sure, non-rural hospitals have also seen an increase in bad debt. But most city hospitals are part of a larger health system and can weather the storm better than small, independent rural hospitals operating on razor-thin margins.
Colorado has so far avoided the rural hospital closures that have plagued other states. Nonetheless, 22 rural hospitals in Colorado operated in the red last year, according to Michelle Mills, CEO of the Colorado Rural Health Center. That's double the number in 2018.
"We're definitely at a tipping point," Mills said.
Finding Solutions
Hospital and rural health groups across Colorado are lobbying for changes in insurance plan designs to circumvent the impact from high-deductible plans. Lincoln Community's Stansbury suggested that primary care services, which help keep rural hospitals afloat and patients healthy, should be exempt from the deductible to encourage patients to keep up with their care.
Another option would be simplifying billing so insurance plans would pay hospital and doctor bills directly and send patients a single bill of what they owe. That approach would solve a common complaint from patients who struggle to reconcile multiple bills from various hospitals, doctors and other health care providers that stem from a single episode of care. It would also shift the burden of collecting the patient's portion of the bill to insurance companies, and protect the hospitals against uncollectible bad debt, leveling the playing field for the rural hospitals.
The Colorado Hospital Association is working with several state legislators to propose that sort of billing structure during the 2020 legislative session. Stansbury said the approach would also allow rural hospitals to focus on patient care rather than trying to collect payments.
"We just don't have the expertise for billing," he said. "We do it badly."
The National Rural Health Association favors requiring insurance plans that offer Medicare and Medicaid plans in rural areas to also offer exchange plans in those counties. If rural consumers had more options, they might be able to avoid high-deductible plans.
That could minimize bad debt for rural hospitals and pay dividends far beyond health care, Elehwany said.
"When you've got a small rural hospital and it closes, it's a nail in the coffin of that rural community," she said. "How are you going to attract a business? How are you going to keep your school if you don't have physicians? In rural America, health care is really part of the whole infrastructure of the community."
Improving health and lowering costs for the sickest and most expensive patients in America is a dream harder to realize than many health care leaders had hoped, according to a study published Wednesday by the New England Journal of Medicine.
Researchers tested whether pairing frequently hospitalized patients in Camden, New Jersey, with nurses and social workers could stop that costly cycle of readmissions. The study found no effect: Patients receiving extra support were just as likely to return to the hospital within 180 days as those not receiving that help.
"It's my life's work. So, of course, you're upset and sad," said Brenner, who now does similar work with health insurance giant UnitedHealthcare.
The model of care, pioneered in part by Brenner and profiled in a widely read 2011 article in The New Yorker, has inspired dozens of similar projects across the country and attracted millions in philanthropic funding.
"This is the messy thing about science," said Brenner, who won a MacArthur Foundation "Genius Grant" for his efforts. "Sometimes things work the way you want them to do work and sometimes they don't."
The Hope
Many hospital and insurance executives have pinned their hopes on this work because it promised to solve a common problem: when patients lives are so complicated by social factors like poverty and addiction that their manageable medical conditions, like diabetes and asthma, lead to expensive, recurring hospital stays.
Writer and physician Atul Gawande introduced Brenner as a brash visionary crusading on behalf of the "worst-of-the-worst patients" in the New Yorker piece, titled "The Hot Spotters." (Gawande, who now heads Haven, a joint venture of Amazon, Berkshire Hathaway and JPMorgan Chase, declined to be interviewed for this article.)
Brenner's prescription: Pair these people with front-line care workers who would shepherd them to the social and medical services they needed. Early evidence was promising, the anecdotes inspiring. Brenner boiled the model's potential down to four words and two tantalizing goals: better care, lower costs.
"Lots of organizations make claims that their programs work and they've never been rigorously tested," Brenner said.
Instead, Brenner took the unusual step of inviting the scrutiny of respected researchers.
In 2014, Massachusetts Institute of Technology economist Amy Finkelstein began a randomized controlled trial, the same rigorous method used to evaluate new drugs. Over four years, the coalition enrolled 800 patients, all who had been recently hospitalized and struggled with social problems. Half received the usual care patients get when leaving the hospital. The other half got about 90 days of intensive social and medical assistance from the coalition.
And the result: The 400 patients who received the intensive help were just as likely to return to the hospital as the patients who didn't. In both groups, nearly two-thirds of people were readmitted within 180 days.
So why did the coalition fail? Why did the savings touted in their early data, which Gawande had declared "revolutionary" in The New Yorker nearly a decade ago, disappear when put to this rigorous test?
'My Daily Routine'
Larry Moore, who has hypertension, alcohol addiction, chronic seizures and difficulty walking, was one of the first people to enroll in the coalition's trial.
Moore's experience serves as a road map for understanding why the coalition missed its mark.
His first months were promising: prescriptions filled, medical appointments attended, Social Security benefits claim in process. The 47-year-old even started to trust the team with the details of his deep-seated addiction, confiding how he would consume mouthwash, vanilla extract and even hand sanitizer at times.
"You couldn't keep anything with alcohol in it" around him, Moore recalled. "That's addiction."
But all the progress suddenly stopped when Moore seemed to disappear from the coalition's radar.
"We didn't see Mr. Moore after November," said nurse Jeneen Skinner. "We went to the house. We sent text messages. We [made] phone calls."
The coalition has learned that for people living in poverty and with poor health, a small hiccup — in Moore's case, a missed rent payment — can spiral into a major setback.
Moore spent the next 2½ years mostly homeless, completely out of touch with the coalition.
"I was going from place to place. I sleep on a bench or a rock until the next day when the liquor store opens," remembered Moore. "That was my daily routine."
Seventy emergency room visits and six hospital admissions later, Skinner reconnected with Moore.
He told her the one thing that would keep him out of the hospital: housing.
The 'Camden Coalition'
Too many times, during the trial, people ended up back in the hospital despite the intervention. But the coalition is convinced it didn't fail as much as the larger social safety net did.
"The bottom line is, we built a brilliant intervention to navigate people to nowhere," said Brenner.
Coalition staff and their patients usually knew what was needed — evidence-based addiction treatment, housing, mental health services — but resources were often in short supply.
Over the past three years, the coalition set out to fill in those gaps, undergoing a kind of metamorphosis.
"We think of ourselves now as the Camden Coalition" steering away from the "health care providers" part of the name, said Kathleen Noonan, who succeeded Brenner as head of the organization.
It has forged partnerships with jails, lawyers and legislators, and started its own housing program. Many of these efforts began as the clinical trial was ongoing — a sign the coalition had seen the writing on the wall.
'I Kid You Not'
"I would have never imagined this," said Moore, sweeping his arm around his one-bedroom apartment.
A green houseplant sits in the sunshine. A fluorescent-colored stuffed animal decorates the bed.
"When I first moved in here," Moore explained, "it took me about a month to even sleep in my bed. I slept on a couch."
Housing made it easier to face his other problem, choosing to try the drug naltrexone, a long-acting injection to treat alcohol addiction.
Moore is nearly two years sober today. He meets with a coalition support group on Wednesdays. He's becoming a deacon at his church. In the 22 months he has lived in the apartment, Moore's trips to the hospital have plummeted: just one admission and one ER visit.
"I kid you not, when I saw Mr. Moore probably a month ago, I was standing next to him and did not recognize him," said nurse Skinner. "He looked at me, and said, 'Jeneen, it's me. And I was like, 'My God, you look amazing!'"
Larry Moore's story is just that: one story.
Yet it represents a larger trend. Insurers — including UnitedHealthcare under Brenner's direction — hospitals and many state Medicaid agencies have begun spending millions to meet patients' social needs.
The new study, though, backs up the skepticism of other researchers that, when it comes to saving money at least, these approaches don't work well. For one, programs are expensive and hard to scale. The coalition's housing effort currently serves only 50 people and costs about $14,000 per person per year. Secondly, the data is lacking, cautioned Boston University economist Austin Frakt. "Despite what people would like to believe, there's not a lot of evidence you can reduce health spending by spending more in other areas."
Finkelstein said that as health care companies move further beyond the four walls of a hospital, the need for rigorous evaluation grows. "I think a lot of well-intentioned people in health care can't handle the truth," she said. "They're trying to do good, but they don't have the courage to say, 'Let's do a gut check on ourselves.'"
Dan Gorenstein is the creator and co-host of Tradeoffspodcast and Leslie Walker is a producer on the show, which features the study on the Camden Coalition in episode 7.
India Hardy has lived with pain since she was a toddler — ranging from dull persistent aches to acute flare-ups that interrupt the flow of her normal life.
Sitting in the afternoon heat on her mom's porch in Athens, Georgia, Hardy recollected how a recent "crisis" derailed her normal morning routine.
"It was time for my daughter to get on the bus, and she's too young to go on her own," Hardy recalled. "I was in so much pain I couldn't walk. So, she missed school that day."
Sickle cell disease affects red blood cells, which travel throughout the body carrying oxygen to tissues. Healthy red blood cells are shaped like plump and flexible doughnuts, but in people with sickle cell disease, the red blood cells are deformed, forming C-shaped "sickles" that are rigid and sticky.
These sickle-shaped cells can cause blockages in the blood vessels, slowing or even stopping normal blood flow. An episode of blockage is known as a sickle cell "crisis" — tissues and organs can be damaged because of lack of oxygen, and the patient experiences severe spells of pain.
'It's Like Torture'
Hardy tries to manage these crises on her own. She'll take a hot bath or apply heating pads to try to increase her blood flow. Hardy also has a variety of pain medications she can take at home.
When she has exhausted those options, she needs more medical help. Hardy would prefer to go to a specialized clinic for sickle cell patients, but the closest is almost two hours away, and she doesn't have a car.
So, Hardy often goes to the emergency room at nearby St. Mary's Hospital for relief. Until recently, the doctors there would give her injections of the opioid hydromorphone, which she says would stop her pain.
Then, some months ago, the emergency room changed its process: "Now they will actually put that shot in a bag which is full of fluids, so it's like you're getting small drips of pain medicine," Hardy said. "It's like torture."
It's the same for her brother, Rico, who also has sickle cell disease and has sought treatment at St. Mary's. The diluted medicine doesn't give the same pain relief as a direct injection, they say.
Striking A Balance
St. Mary's staffers explain that they're trying to strike a balance with their new treatment protocol between adequate pain treatment and the risk that opioid use can lead to drug dependence.
It's a local change that reflects a national concern. The U.S. is in the midst of an addiction and overdose crisis, fueled by powerful opioids like hydromorphone. That crisis has made medical providers more aware of the risks of administering these drugs. More than 47,000 Americans died in 2017 from an overdose involving an opioid, according to the Centers for Disease Control and Prevention.
That has prompted some emergency room leaders to rethink how they administer opioid medications, including how they treat people, such as Hardy, who suffer from episodes of severe pain.
"We have given sickle cell patients a pass [with the notion that] they don't get addicted — which is completely false," said Dr. Troy Johnson, who works in the emergency room at St. Mary's. "For us to not address that addiction is doing them a disservice."
Johnson proposed the ER's shift to intravenous "drip delivery" of opioids for chronic pain patients because of personal experience. His son has sickle cell disease, and Johnson said he has seen firsthand how people with the disease are exposed to opioids when very young.
"We start creating people with addiction problems at a very early age in sickle cell disease," Johnson said.
He brought his concerns to the director of the ER, Dr. Lewis Earnest, and found support for the change. Hospital officials say they also consulted national guidelines for treating sickle cell crises.
"We're trying to alleviate suffering, but we're also trying not to create addiction, and so we're trying to find that balance," Earnest said. "Some times it's harder than others."
St. Mary's says the new IV-drip protocol is for all patients who come to the emergency room frequently for pain, and most of their sickle cell patients are fine with the change.
Caught In The Crossfire
The national guidelines cited by St. Mary's also say doctors should reassess patient pain frequently and adjust levels of opioids as needed "until pain is under control per patient report."
Some people who work closely with sickle cell patients, upon hearing about the new approach to pain management at St. Mary's, called it "unusual."
It's more common for ERs to give those patients direct "pushes" of pain medication via injection, she noted, not slower IV drips.
People with sickle cell disease aren't fueling the opioid problem, Andemariam said. One study published in 2018 found that opioid use has remained stable among sickle cell patients over time, even as opioid use has risen in the U.S. generally.
"If anything, individuals with sickle cell disease in our country have really been caught in the crossfire when it comes to this opioid epidemic," Andemariam said.
She suggested that ER doctors and nurses need more education on how to care for people with sickle cell, especially during the painful crisis episodes, which can lead to death.
A study of some 16,000 deaths from 1979 to 2005 related to sickle cell found that men in the group lived to be only 33, on average. Women didn't fare much better, living to an average age of 37. The same study suggested that a lack of access to quality care is a factor in the short life spans of people with sickle cell disease.
Researchers who study sickle cell say the opioid epidemic has made it harder for patients with the condition to get the pain medication they need. The American College of Emergency Physicians isfocusing on the problem, asking federal health officials to speak out about sickle cell pain and fund research on how to treat it without opioids.
"We in the physician community are looking for ways to make sure they get adequate pain relief," said Dr. Jon Mark Hirshon, vice president of the group. "We recognize that the process is not perfect, but this is what we're striving for — to make a difference."
Considering A Move To Find Relief
In the meantime, India Hardy said she feels those imperfections in the process every time she suffers a pain crisis, and she's not alone.
In addition to her brother, Hardy said she has another friend in Athens with sickle cell disease, and that friend has also reported difficulty in finding pain relief at the St. Mary's emergency room.
"It's just really frustrating, because you go to the hospital for help — expecting to get equal help, and you don't," Hardy said, her voice breaking. "They treat us like we're not wanted there or that we're holding their time up or taking up a bed that someone else could be using."
Hardy filed a complaint with the hospital but said nothing has changed, at least not yet. She still gets pain medication through an IV drip when she goes to the St. Mary's emergency room.
At this point, she's considering leaving her relatives and friends behind in Athens to move closer to a sickle cell clinic. She hopes doctors there will do a better job of helping to control her pain.
This story is part of a partnership that includes WABE, NPR and Kaiser Health News.
Seema Verma, administrator for the Centers for Medicare & Medicaid Services, sat down for a rare one-on-one interview with Kaiser Health News senior correspondent Sarah Varney.
They discussed her views on President Donald Trump's plan for sustaining public health insurance programs, how the administration would respond if Obamacare is struck down by the courts in the future and her thoughts on how the latest "Medicare for All" proposals would affect innovation and access to care.
A portion of their conversation aired on PBS NewsHour on Dec. 23. A transcript follows, edited for length and clarity.
Sarah Varney: Thank you, Administrator Verma, for joining us. We really appreciate it. You spoke recently about this need to protect Medicaid as a lifeline, but also not to have people be entrapped, or trapped on, Medicaid and come to rely upon it too greatly. So, as I was mentioning, we were in Tennessee recently, and I know you can't speak to specific cases —
Seema Verma: Mmm, hmm.
Varney: But, we did find a number of families who had been disenrolled, and then found it quite difficult to get back on. And I just wondered if there is a danger in taking this approach where there's more frequent verification checks, a real focus on eligibility verification, that it could discourage some parents and kids who might be eligible for the program from signing up?
Verma: Well, our top priority is making sure that the beneficiaries in the Medicaid program have high-quality, accessible care, and we want to do everything that we can to improve the quality of their lives. In terms of the enrollment process, we also have an obligation to taxpayers to make sure that only the people that qualify for the programs are participating. And we also want to make sure that the programs are sustainable over the long term. I think there's a balance between making sure it's easy for people to apply, but we also have to make sure that we do the appropriate work to make sure that they qualify for the programs.
Varney: So, are you concerned, though, that there were a number of people, after the eligibility process kicked in again in 2017, after the ACA sort of put things on hold for a while, that there might have been families, though, that have been lost? That just don't want to come back, or can't come back? Or are hearing worries about the public charge rule, as well, and so are concerned about giving the government their information?
Verma: You know, our top priority is making sure that we focus on improving quality of care, high-quality care, accessible care, and making sure that we're improving the quality of life for individuals. You know, when I think of the Medicaid program, and in every decision we make, I try to keep in mind the actual beneficiary. In my time spent on the Medicaid program, I've met a lot of Medicaid beneficiaries. I met a gentleman, Richard, who was in Indiana. He was a quadriplegic and literally requires 24-hour care. I met some parents of a child on the Medicaid program. This child had cerebral palsy and so severe that they require 24-hour care, and you can imagine the impact on the entire family. This is a child that will never be independent, will always require help. And so, when we're creating our eligibility policies, we keep those individuals in mind. We don't want to make it harder for them to apply for the program.
And so, we try to come up with policies that don't put a lot of onerous requirements on the beneficiary, but we can have requirements for states that require them to do back-end processes, and back-end checks that don't actually burden the actual recipient or their families, but that also ensure that we are putting the appropriate protections in place for taxpayers, so the program is sustainable over the long term. And we have only the people that qualify for the program participating.
Varney: We know that more health coverage leads to longer life expectancy; I think this has been well established. And I wonder if whether or not the administration should be emphasizing more finding those children who are not enrolled, who are eligible but not enrolled, and perhaps focusing on outreach, which we haven't really heard your administration talk about?
Verma: Well, again. Our focus is on making sure, especially children, that they have access to high-quality health care. As a mom, I've got two kids, so I can personally attest to the fact that having health insurance is very important for children. Something very little, like an ear infection, can lead to deafness if it's not, you know, treated appropriately. So having that access to high-quality health care is very, very important to their development. The Trump administration is very committed to the Children's Health Insurance Program; the president signed legislation around that. Additionally, we have spent over $48 million on outreach efforts. We're very focused on working with states, so that they can identify the best practices to make sure that those individuals, children that qualify, can enroll in the program, that they're aware that this program exists.
Varney: Have you found that the reduction in the Navigator grants has made it more difficult to reach those families?
Verma: We, actually, we have not. If you look, the Navigator programs are really aimed at the Affordable Care Act programs and the exchange programs. So those are not aimed at children. Those are aimed at our adult population. And we have seen very minimal impact. What we have done is try to increase our digital communication, of, to help enrollment. And we've seen a very minimal impact on enrollment.
I think the issue around enrollment really comes back to affordability. Obamacare has had a direct impact on increasing premiums. Across the nation, we've seen premiums go up by 100%, 200%. [Editor's note: PolitiFact rated this claim by the Trump administration "false." ACA premiums were down by about 4% in 2019 compared with 2018.] And so the issue around enrollment is that health insurance has become so unaffordable for families that that's why they can't afford their coverage.
Varney: So we did hear from a number of federally qualified health centers that although the Navigator grants really were focused on, you know, ideally they were focused on exchanges, people buying private health insurance, that, in fact, there were a lot of people who came in, who became eligible for Medicaid and discovered that they were eligible for Medicaid in that way. So I wonder if there is additional outreach that needs to be done to those families, not just virtually or online, but some other way to reach those families?
Verma: The real problem around making sure that people have access to affordable coverage is really addressing the high cost of health care. And that's what the president is focused on. His health care agenda isn't just about putting out more subsidies and having the government pay more and more and creating unaffordable programs. But it is about addressing the underlying cost drivers in health care. That's why he's focused on prescription drug pricing, he's focused on transparency, price transparency, so that there's more competition in the market. We're also focused on getting rid of burdensome regulations that we know drive up the cost of care.
I think by addressing that, that is going to result in decreased premiums, which will result in more people having access to affordable coverage.
Varney: But all those things that you just mentioned — they don't necessarily affect the Medicaid population directly. Now, they may affect them indirectly by increasing overall health care costs, but in terms of the Medicaid population, really reaching out, ensuring that every single child who's eligible for Medicaid is enrolled?
Verma: So, our focus is also on addressing the economy. Under the president's leadership, we have a booming economy. We have one of the lowest unemployment rates. We have more people that are earning more money, and we have fewer people living in poverty. There's been a reduction in the number of people living in poverty by 1.4 million people. And so, we are seeing people coming out of the Medicaid program, and because the economy's doing so well. The issue is, though, they can't afford coverage. And so, even as we increase our outreach efforts, we spent over $48 million on outreach, the issue is around affordability. Obamacare has impacted the market in such a way that it's become unaffordable for people that don't have subsidies.
Varney: So, we're at this moment in our country and our national conversation where we're talking about how do we ensure that more and more people are insured? And I wonder what the administration is doing to move the needle, to stop the growth in the uninsured, particularly among children?
Verma: I think our focus has been about addressing affordability of health care. The underlying issue in people not being able to afford their health insurance is that it's too expensive. And the solution is not trying to throw more government money around subsidies, because that's just going to increase taxes for everybody. Our approach is to address the underlying issues. President Trump is addressing long-standing issues in health care that haven't been addressed by any administration. The blueprint that he put out on drug pricing was very historic. The work that he's done on price transparency. And the work that we're trying to do around the regulatory burden, getting rid of all kinds of unnecessary regulations that are actually increasing the cost of health care for providers. We spend over $200 billion on administrative costs every year. So what we're trying to do is address the cost of health care, but also make sure that we continue to have the high-quality, innovative health care system that Americans are used to.
Varney: So there are some people who are advocating for a Medicare for All type of solution to this, to say that much of those costs are because the marketplace, in a sense, doesn't work in health care. And I wonder what you say to people who are proposing that? Who are saying, this is all just, that the market doesn't work when it comes to health care?
Verma: So, when it comes to health care and it comes to the solutions around Medicare for All. … Medicare for All would strip Americans, 180 million Americans, of their private health insurance and put them on a government-run, bureaucratic program. If we look at the programs that we have today, our government-run programs, our Medicare program is not affordable. The Medicare Trustees have indicated in the next seven years they're gonna run out of money, they're gonna have trouble paying their bills. The Medicaid program is the No. 1, No. 2 budget item for many states. And you're hearing states every day — look at the situation in New York, where they can't afford their Medicaid programs. And so, our track record on government-run programs isn't strong. And I think our focus is on trying to unleash competition to drive down costs, but keep the innovation in the system. Our concern is that a government-run or more government is going to thwart innovation.
As the head of the Medicare program, I see every day that government regulations kind of stand in the way, that there are delays in our beneficiaries being able to access treatments. That's why the president put out the Medicare Executive Order, which was focused on making sure we can do better with this. But I think, you know, putting more people on a government program is actually going to threaten the sustainability of the programs that we have in place today.
Varney: And do you think through the measures that you're talking about, that you could reduce costs — 15%, 20% — in the health care system of the United States?
Verma: I think our goal is to try to reduce cost, and to make it more unaffordable [sic]. And we've had great success with this under President Trump's leadership. If we look at the Medicare Advantage Program, for example, under his leadership, premiums have gone down by over 23% since he came into office. In the Part D program, premiums are down by 13%, the lowest level in seven years. Going back to Medicare Advantage, that's the lowest level in 13 years. So, I think the president's policies are working, because we demonstrated that we can lower premiums.
Same thing on the individual exchanges. For the very first time, the individual market has been stabilized and premiums went down last year by a percent, this year by 4%, and they're still too high, there's a new class of uninsured being created by Obamacare, but President Trump's policies have actually resulted in more Americans, more seniors having money back in their pockets.
Varney: Now we're waiting for a ruling from the courts on the future of the Affordable Care Act. If it's struck down, what is your plan to replace it?
Verma: Well, the president's been very clear that he wants to make sure that individuals with preexisting conditions have protections. And we have prepared for a variety of scenarios, and we want to make sure that there's no disruption in coverage. And we'll work with Congress to make sure that Americans have access to high-quality, affordable coverage. That is not what they have today. People with preexisting conditions do not have those protections. Individuals that don't get subsidies and can't afford coverage really don't have those protections. And so the president wants to make sure that we're addressing those individuals, and that people with preexisting conditions have the appropriate protections that they don't have today.
Varney: But how do you guarantee those protections, also reduce costs and not lead to widespread uninsurance rates going up?
Verma: I think our focus is not just on costs, but it's also making sure that we preserve quality and innovation in the system. One of the initiatives that we've had is around trying to pay our providers differently. Right now, we're paying in a system where we just pay for people to get things done. And we want to change that paradigm, where we're holding providers accountable for providing quality care, improving the quality of life, preventing disease and keeping people healthy.
Varney: So, just my final question. There have been these reports of a rift, a growing rift between you and Department of Health and Human Services Secretary Alex Azar. And I wonder if people should be concerned about whether or not that's going to get in the way of the very ambitious slate of initiatives that you and President Trump have planned?
Verma: Well, Secretary Azar and I are both committed and have a shared goal around delivering on the president's agenda.