The more than $34,000 in medical bills that contributed to Darla and Andy Markley's bankruptcy and loss of their home in Beloit, Wisconsin, grew out of what felt like a broken promise.
Darla Markley, 53, said her insurer had sent her a letter preapproving her to have a battery of tests at the Mayo Clinic in neighboring Minnesota after she came down with transverse myelitis, a rare, paralyzing illness that had kept her hospitalized for over a month. But after the tests found she also had beriberi, a vitamin deficiency, Anthem Blue Cross and Blue Shield judged that the tests weren't needed after all and refused to pay — although Markley said she and Mayo had gotten approval.
While Darla learned to walk again, the Markleys tried to pay off the bills. Even after Mayo wrote off some of what they owed, her disability and Social Security checks barely covered her insurance premiums. By 2014, five years after her initial hospitalization, they had no choice but to declare bankruptcy.
Anthem Blue Cross and Blue Shield spokesperson Leslie Porras said company "records do not indicate that Ms. Markley had tests authorized that were later denied."
Markley said she never would have had the tests done if she had known insurance was not going to pay for them. "I feel for anyone that finds themselves in that predicament," said Markley, a nurse who was pursuing her Ph.D. in education. "You can go from an upstanding middle-class American citizen to completely under the eight ball."
The billing quagmire into which the Markleys fell is often called "retrospective denial" and is generating attention and anger from patients and providers, as insurers require preapproval — sometimes called "prior authorization" — for a widening array of procedures, drugs and tests. While prior authorization was traditionally required only for expensive, elective or new procedures, such as a hip replacement or bypass surgery, some insurers now require it for even the renewal of some prescription drugs. Those preapprovals are frequently time-limited.
While doctors and hospitals chafe at the administrative burden, insurers contend the review is necessary to ferret out waste in a system whose costs are exploding and to ensure physicians are prescribing useful treatments.
But patients face an even bigger problem: When insurers revoke their decision to pay after the service is completed, patients are legally on the hook for the bill.
Prior authorizations may now include a line or two saying something like: "This is not a guarantee of payment." This loophole allows insurers to change their minds after the fact — citing treatments as medically unnecessary upon further review, blaming how billing departments charged for the work or claiming the procedure was performed too long after approval was granted.
In other cases, a patient will be told that no prior authorization is needed for a certain intervention, only to hear afterward that the insurer wanted one in this particular case. It then refuses to pay. Oftentimes, approval conversations happen primarily between the insurer and the provider — leaving the patient further in the dark when the bill appears.
The American Medical Association drafted model legislation to combat the problem for lawmakers to introduce, but the measure has not been widely picked up.
Martha Gaines, director of the Center for Patient Partnerships at the University of Wisconsin Law School, co-authored an article in the Journal of the American Medical Association on the issue and sees firsthand the time and money patients lose fighting such retrospective denials — for coverage they thought they had.
"How broken can you get?" she asked. "How much more laid bare can it be that our health care insurance system is not about health, nor caring, but just for profit?"
Many physicians and health care providers consider the extra paperwork needed for prior authorizations a growing scourge that requires them to expand their staff to handle the back-and-forth with insurers. According to an American Medical Association survey released in 2019, 88% of providers reported that the burden of prior authorization has increased over the past five years, forcing them or their staff to spend an average of two business days a week completing them.
The process of prior authorization aims to establish medical necessity to prevent "unnecessary, costly, or inappropriate medical treatments that can harm patients," according to Cathryn Donaldson, a spokesperson for the America's Health Insurance Plans industry group.
It's unknown how many patients get stuck with bills for prior approvals gone wrong. But retrospective denials have become only more common as prior authorizations have increased, said Dr. Debra Patt, an oncologist and chair of the Texas Medical Association's legislative council.
Her practice has tripled the number of staff who deal with prior authorizations, and she said she is currently trying to get the Texas Medical Association to survey its members on the revocation topic after seeing its impact on her patients, one of whom she said recently had chemotherapy payments denied.
Donaldson said her insurance trade group realizes the process for prior authorizations could be improved and is working with tech companies to help streamline it for all involved. But she added that denials may be simple requests for more information.
"A denial usually occurs because the clinician may not have provided the documentation needed to show that the treatment is necessary," Donaldson said. "Once that documentation is received, claims may then be approved."
As insurers and providers argue over money, patients are often stuck in the middle.
After Rebecca Freeman's insurer, Moda Health Plan, approved a genetic test for the Portland, Oregon, woman's now 5-year-old daughter in 2018 to rule out a serious condition that could cause blindness, the insurer declined to pay after the test was performed.
Moda argued that the dates and billing codes didn't match up with what was authorized. It told Freeman's lab company, PreventionGenetics, it wasn't going to pay, and, eventually, PreventionGenetics billed Freeman.
"Everyone is pushing the blame on everyone else, and I'm left holding the bag — there's no recourse for the patient," Freeman said. "Worst case for them is they pay what they were supposed to. You don't get anything for all your stress and time."
When Kaiser Health News first asked about the case, Moda spokesperson Jonathan Nicholas said it was still an active claim. "As soon as the lab provides us with correct information, we anticipate prompt payment," he said.
But Freeman said Moda had denied five claims and appeals on the nearly $2,000 bill for more than a year.
Within days of KHN's questions, Moda paid the bill.
The Problem With Legalese
Pharmacist Melita Pasagic of Fenton, Missouri, was told by her provider — who had called UnitedHealthcare, her insurer — that her and her husband's genetic tests needed no prior authorization.
After the tests were performed, though, UnitedHealthcare told Pasagic it had deemed the tests medically unnecessary and would not pay for them. Later when she called, she said, the insurer cited a coding discrepancy. Although Pasagic spent hours on the phone appealing the decision, the insurer didn't budge. The genetic testing company sent the $5,000 bill to collections.
"How can you deny anything post-service for medical necessity?" she said. "If it didn't require a pre-review, why does it have a post-review?"
Pasagic said she plans to take UnitedHealthcare to court over it. The insurance company said the testing was never covered in the first place.
"While certain procedures, tests and drugs may not require prior authorization, individuals should still confirm that the services are covered under their benefit plans," UnitedHealthcare spokesperson Maria Gordon Shydlo said.
Typically, there's no penalty for insurance companies that play games with prior authorizations, Gaines said, calling denials and delays integral to their business model.
The National Association of Insurance Commissioners has formed a working group to investigate the revocations following a presentation in December by Patt, of the Texas Medical Association. The Minnesota and Pennsylvania departments of insurance both said they had seen complaints regarding retrospective denials of prior authorizations. But quick fixes are unlikely.
"There's no silver bullet for this issue, so we encourage consumers to remain vigilant," said Katie Dzurec, acting director for the Health Market Conduct Bureau in Pennsylvania. "Ask questions, review documents and contact the insurance department."
Markley hopes this doesn't happen to more people.
"I wish people would understand that they are one illness away from totally losing everything they worked for," Markley said. "I lost it all in a day."
After Zoe Friedland became pregnant with her first child, she was picky about choosing a doctor to guide her through delivery.
"With so many unpredictable things that can happen with a pregnancy, I wanted someone I could trust," Friedland said. That person also had to be in the health insurance network of Cigna, the insurer that covers Friedland through her husband's employer.
Friedland found an OB-GYN she liked, who told her that she delivered only at Sequoia Hospital in Redwood City, California, a part of San Francisco-based Dignity Health. Friedland and her husband, Bert Kaufman, live in Menlo Park, about 5 miles from the hospital, so that was not a problem for them — until Dec. 12.
That's the day Friedland and Kaufman received a letter from Cigna informing them their care at Sequoia might not be covered after Jan. 1. The insurance company had not signed a contract for 2020 with the hospital operator, which meant Sequoia and many other Dignity medical facilities around the state would no longer be in Cigna's network in the new year.
Suddenly, it looked as if having their first baby at Sequoia could cost Friedland and Kaufman tens of thousands of dollars.
"I was honestly shocked that this could even happen because it hadn't entered my mind as a possibility," Friedland said.
She and her husband are among an estimated 16,600 people caught in a financial dispute between two gigantic health care companies. Cigna is one of the largest health insurance companies in the nation, and Dignity Health has 31 hospitals in California, as well as seven in Arizona and three in Nevada. The contract fight affects Dignity's California and Nevada hospitals, but not the ones in Arizona.
"The problem is price," Cigna said in a statement just before the old contract expired on Dec. 31. "Dignity thinks that Cigna customers should pay substantially more than what is normal in the region, and we think that's just wrong."
Tammy Wilcox, a senior vice president at Dignity, said, "At a time when many nonprofit community hospitals are struggling, Cigna is making billions of dollars in profits each year. Yet Cigna is demanding that it pay local hospitals even less."
In 2018, the most recent full year for which earnings data is available, Cigna generated operating income of $3.6 billion on revenue of approximately $48 billion. Dignity Health reported operating income of $529 million on revenue of $14.2 billion in its 2018 fiscal year.
It's possible Cigna and Dignity can still reach an agreement. Both sides said they will keep trying, though no talks are scheduled.
Disagreements between insurers and health systems that leave patients stranded are a perennial problem in U.S. health care. Glenn Melnick, a professor of health economics at the University of Southern California, said such disputes, which are disruptive to consumers, are often settled.
Melnick believes Dignity is using an "all or nothing" strategy in contract negotiations, meaning either all its facilities are in the insurer's network or none are.
"This allows them to increase their market power to get higher prices, which is not necessarily good for consumers," Melnick said.
Dignity replied in an emailed statement: "We do not require payers to contract with all or none of Dignity Health's providers. We do try to make sure patients have access to the full range of Dignity Health services and facilities in each of our communities."
Dignity faces a number of legal and financial challenges while it works to implement a February 2019 merger with Englewood, Colorado-based Catholic Health Initiatives that created one of the nation's largest Catholic hospital systems — known as CommonSpiritHealth.
California Attorney General Xavier Becerra approved the deal with conditions, including that Dignity's California hospitals spend $10 million in the first three years on services for people experiencing homelessness and offer free care to more low-income patients.
The requirement to treat more poor patients at no charge followed a period, from 2011 to 2016, in which Dignity's charity care declined about 35% while its net income was $3.2 billion.
Last October, CommonSpirit announced an operating loss of $582 million on revenue of nearly $29 billion for the 2019 fiscal year, its first annual financial statement after the merger took effect. Much of the loss was due to merger-related costs and special charges.
The same month, Dignity completed a five-year "corporate integrity agreement" with the U.S. Office of the Inspector General following an investigationinto how it billed the government for hospital inpatient stays. Dignity said it "fully complied" with the agreement.
Dignity is also defending itself in a class-action lawsuit alleging that it bills uninsured patients at grossly inflated rates even though it claims to provide "affordable" care at "the lowest possible cost."
More recently, an appeals court judge ruled Dignity could not charge higher prices — often a lot higher than state-set rates — for treating enrollees of L.A. Care's Medi-Cal health plan at its Northridge Hospital Medical Center.
Dignity disagreed with the court's ruling in that case, saying that although the Northridge facility did not have a contract with L.A. Care, many of the health plan's enrollees who initially sought emergency treatment there stayed in the hospital for additional care after they had been stabilized. The hospital "seeks appropriate reimbursement for providing this care," Dignity said.
If Dignity does not reach an agreement with Cigna, its hospitals, outpatient surgery centers and medical groups in most of California will soon be out-of-network for many Cigna enrollees. In-network coverage for Open Access (OAP) and Preferred Provider (PPO) ended Feb. 1, and for HMO patients it is set to end April 1.
Peter Welch, president and general manager for Cigna in Northern California and the Pacific Northwest, said Cigna can provide "adequate access" to other hospitals and doctors.
Certain Cigna enrollees can apply to continue visiting Dignity facilities and doctors under California's Continuity of Care law, enacted in 2014. Eligible enrollees include patients with chronic conditions, those already scheduled for pre-authorized services, people in need of emergency care and pregnant women in their third trimester.
Friedland and Kaufman applied, hoping she would be able to continue seeing her Dignity-affiliated OB-GYN at in-network rates.
On Jan. 22, less than a month from Friedland's Feb. 15 due date, they received written confirmation that their request had been approved. They wouldn't have to shop for a new doctor or face stiff medical bills after all.
Early Tuesday evening, Friedland gave birth to a baby girl, Eliza, who entered the world 11 days earlier than expected, weighing in at 7 pounds, 3 ounces.
"While the ordeal was stressful, and the communication fraught, we were happy to receive confirmation of continuity of care and that it ended in the best possible way — with the birth of our healthy baby daughter with the provider where we established care," Kaufman said. "For the sake of those caught in the middle and now having to start relationships with new health care providers, we hope the two sides can come to an agreement."
Clinicians wrestle with what they consider barriers to quality care: insurance preauthorization, trouble making patient referrals, endless clicking on EHRs.
This article was first published on Tuesday, February 4, 2020, in Kaiser Health News.
Dr. Keith Corl was working in a Las Vegas emergency room when a patient arrived with chest pain. The patient, wearing his street clothes, had a two-minute exam in the triage area with a doctor, who ordered an X-ray and several other tests. But later, in the treatment area, when Corl met the man and lifted his shirt, it was clear the patient had shingles. Corl didn't need any tests to diagnose the viral infection that causes a rash and searing pain.
All those tests? They turned out to be unnecessary and left the patient with over $1,000 in extra charges.
The excessive testing, Corl said, stemmed from a model of emergency care that forces doctors to practice "fast and loose medicine." Patients get a battery of tests before a doctor even has time to hear their story or give them a proper exam.
"We're just shotgunning," Corl said.
The shingles case is one of hundreds of examples that have led to his exasperation and burnout with emergency medicine. What's driving the burnout, he argued, is something deeper — a sense of "moral injury."
Corl, a 42-year-old assistant professor of medicine at Brown University, is among a growing number of physicians, nurses, social workers and other clinicians who are using the phrase "moral injury" to describe their inner struggles at work.
The term comes from war: It was first used to explain why military veterans were not responding to standard treatment for post-traumatic stress disorder. Moral injury, as defined by researchers from veterans hospitals, refers to the emotional, physical and spiritual harm people feel after "perpetrating, failing to prevent, or bearing witness to acts that transgress deeply held moral beliefs and expectations."
Drs. Wendy Dean and Simon Talbot, a psychiatrist and a surgeon, were the first to apply the term to health care. Both wrestled with symptoms of burnout themselves. They concluded that "moral injury" better described the root cause of their anguish: They knew how best to care for their patients but were blocked from doing so by systemic barriers related to the business side of health care.
That idea resonates with clinicians across the country: Since they penned an op-ed in Stat in 2018, Dean and Talbot have been flooded with emails, comments, calls and invitations to speak on the topic.
Burnout has long been identified as a major problem facing medicine: 4 in 10 physicians report feelings of burnout, according to a 2019 Medscape report. And the physician suicide rate is more than double that of the general population.
Dean said she and Talbot have given two dozen talks on moral injury. "The response from each place has been consistent and surprising: 'This is the language we've been looking for for the last 20 years.'"
Dean said that response has come from clinicians across disciplines, who wrestle with what they consider barriers to quality care: insurance preauthorization, trouble making patient referrals, endless clicking on electronic health records.
Those barriers can be particularly intense in emergency medicine.
Corl said he has been especially frustrated by a model of emergency medicine called "provider-in-triage." It aims to improve efficiency but, he said, prioritizes speed at the cost of quality care. In this system, a patient who shows up to an ER is seen by a doctor in a triage area for a rapid exam lasting less than two minutes. In theory, a doctor in triage can more quickly identify patients' ailments and get a head start on solving them. The patient is usually wearing street clothes and sitting in a chair.
These brief encounters may be good for business: They reduce the "door to doc" time — how long it takes to see a doctor — that hospitals sometimes boast about on billboards and websites. They enable hospitals to charge a facility fee much earlier, the minute a patient sees a doctor. And they reduce the number of people who leave the ER without "being seen," which is another quality measure.
But "the real priority is speed and money and not our patients' care," Corl said. "That makes it tough for doctors who know they could be doing better for their patients."
Dean said people often frame burnout as a personal failing. Doctors get the message: "If you did more yoga, if you ate more salmon salad, if you went for a longer run, it would help." But, she argued, burnout is a symptom of deeper systemic problems beyond clinicians' control.
Emergency physician Dr. Angela Jarman sees similar challenges in California, including ER overcrowding and bureaucratic hurdles to discharging patients. As a result, she said, she must treat patients in the hallways, with noise, bright lights and a lack of privacy — a recipe for hospital-acquired delirium.
"Hallway medicine is such a [big] part of emergency medicine these days," said Jarman, 35, an assistant professor of emergency medicine at UC-Davis. Patients are "literally stuck in the hallway. Everyone's walking by. I know it must be embarrassing and dehumanizing."
For example, when an older patient breaks an arm and cannot be released to their own care at home, they may stay in the ER for days as they await evaluation from a physical therapist and approval to transfer to rehab or a nursing home, she said. Meanwhile, the patient gets bumped into a bed in the hallway to make room for new patients who keep streaming in the door.
Being responsible for discharging patients who are stuck in the hallway is "so frustrating," Jarman said. "That's not what I'm good at. That's not what I'm trained to do."
Jarman said many emergency physicians she knows work part time to curtail burnout.
"I love emergency medicine, but a lot of what we do these days is not emergency medicine," she said. "I definitely don't think I'll make it 30 years."
Also at UC-Davis, Dr. Nick Sawyer, an assistant professor of emergency medicine, has been working with medical students to analyze systemic problems. Among those they've identified: patients stuck in the ER for up to 1,000 hours while awaiting transfer to a psychiatric facility; patients who are not initially suicidal, but become suicidal while awaiting mental health care; patients who rely on the ER for primary care.
Sawyer, 38, said he has suffered moral injury from treating patients like this one: A Latina had a large kidney stone and a "huge amount of pain" but could not get surgery because the stone was not infected and therefore her case wasn't deemed an "emergency" by her insurance plan.
"The health system is not set up to help patients. It's set up to make money," he said.
The best way to approach this problem, he said, is to help future generations of doctors understand "how decisions made at the systems level impact how we care about patients" — so they can "stand up for what's right."
Whether these experiences amount to moral injury is open for discussion.
Cynda Rushton, a nurse and professor of clinical ethics at Johns Hopkins University, who has studied the related notion of "moral distress" for 25 years, said there isn't a base of research, as there is for moral distress, to measure moral injury among clinicians.
But "what both of these terms signify," Rushton said, "is a sense of suffering that clinicians are experiencing in their roles now, in ways that they haven't in the past."
Dean grew interested in moral injury from personal experience: After a decade of treating patients as a psychiatrist, she stopped because of financial pressures. She said she wanted to treat her patients in longer visits, offering both psychotherapy and medication management, but that became more difficult. Insurers would rather pay her for only a 15-minute session to manage medications and let a lower-paid therapist handle the therapy.
Dean and Talbot created a nonprofit advocacy group called Moral Injury of Healthcare, which promotes public awareness and aims to bring clinicians together to discuss the topic.
Their work is attracting praise from a range of clinicians:
In Cumberland County, Pennsylvania, Mary Franco, who is now 65, retired early from her job as a nurse practitioner after a large corporation bought out the private practice she worked in. She said she saw "a dramatic shift" in the culture there, where "revenue became all-important." The company cut in half the time for each patient's annual exam, she said, down to 20 minutes. She spent much of that time clicking through electronic health records, she said, instead of looking the patient in the face. "I felt I short-shrifted them."
In southern Maine, social worker Jamie Leavitt said moral injury led her to take a mental health break from work last year. She said she loves social work, but "I couldn't offer the care I wanted to because of time restrictions." One of her tasks was to connect patients with mental health services, but because of insurance restrictions and a lack of quality care providers, she said, "often my job was impossible to do."
In Chambersburg, Pennsylvania, Dr. Tate Kauffman left primary care for urgent care because he found himself spending half of each visit doing administrative tasks unrelated to a patient's ailment — and spending nights and weekends slogging through paperwork required by insurers.
"There was a grieving process, leaving primary care," he said. "It's not that I don't like the job. I don't like what the job has become today."
Corl said he was so fed up with the provider-in-triage model of emergency medicine that he moved his ER clinical work to smaller, community hospitals that don't use that method.
He said many people frame burnout as a character weakness, sending doctors messages like, "Gee, Keith, you've just got to try harder and soldier on." But Corl said the term "moral injury" correctly identifies that the problem lies with the system.
"The system is flawed," he said. "It's grinding us. It's grinding good docs and providers out of existence."
The decision came out of the blue. "Your husband isn't going to get any better, so we can't continue services," an occupational therapist told Deloise "Del" Holloway in early November. "Medicare isn't going to pay for it."
The therapist handed Del a notice explaining why the home health agency she represented was terminating care within 48 hours. "All teaching complete," it concluded. "No further hands on skilled care. Wife states she knows how to perform exercises."
That came as a shock. In May 2017, at age 57, Anthony Holloway was diagnosed with ALS (amyotrophic lateral sclerosis): The Frederick, Maryland, man can't walk, get out of bed or breathe on his own (he's on a ventilator). He can't use the toilet, bathe or dress himself. Therapists had been helping Anthony maintain his strength, to the extent possible, for two years.
"It's totally inhumane to do something like this," Del said. "I can't verbalize how angry it makes you."
Why the abrupt termination? SpiriTrust Lutheran, which provides senior services in Pennsylvania and Maryland, said it could not comment on the situation because of privacy laws. "In every client situation SpiriTrust Lutheran is committed to insuring the safety and well-being of the individual," wrote Crystal Hull, vice president of communications, in an email.
But its decision comes as home health agencies across the country are grappling with a significant change as of Jan. 1 in how Medicare pays for services. (Managed-care-style Medicare Advantage plans have their own rules and are not affected.)
Agencies are responding aggressively, according to multiple interviews. They are cutting physical, occupational and speech therapy for patients. They are firing therapists. And they are suggesting that Medicare no longer covers certain services and terminating services altogether for some longtime, severely ill patients.
Altogether, about 12,000 home care agencies (most of them for-profit) provided care to 3.4 million Medicare beneficiaries in 2017, the most recent year for which data is available.
To qualify for services, a person must be homebound and in need of intermittent skilled care (less than eight hours a day) from nurses or therapists.
Previously, Medicare's home health rates reflected the amount of therapy delivered: More visits meant higher payments. Now, therapy isn't explicitly factored into Medicare's reimbursement system, known as the Patient-Driven Groupings Model (PDGM).
Instead, payments are based on a patient's underlying diagnosis, the presence of other complicating medical conditions, the extent to which the patient is impaired, whether he or she is referred for services after a hospitalization or a stay in a rehabilitation center (payments are higher for people discharged from institutions) and the timing of services (payments are higher for the first 30 days and lower thereafter).
Agencies now have a stronger financial incentive to serve patients who need short-term therapy after a stay in the hospital or a rehabilitation facility, said Kathleen Holt, associate director of the Center for Medicare Advocacy. Also attractive will be patients who need nursing care for complex conditions such as post-surgical wounds.
At the same time, there are fewer incentives to serve patients who need extensive physical, occupational and speech therapy.
The new system encourages a "holistic" assessment of patients' needs, and there's convincing evidence that home health agencies sometimes provided too much therapy under Medicare's previous system, said Jason Falvey, a postdoctoral research fellow in the geriatrics division at Yale School of Medicine. Between 2000 and 2016, Medicare home health therapy services soared 112%, according to the most recent data published by the Medicare Payment Advisory Commission.
But the risk now is that too little therapy will be offered, Falvey said.
"We are very concerned about that potential," said Kara Gainer, director of regulatory affairs for the American Physical Therapy Association.
Early reports from the field substantiate reason for concern.
Last fall, the National Association for Home Care and Hospice asked 1,500 agencies how practices would change under PDGM. One-third said "categorically, across the board, we're going to reduce our therapy services," said William Dombi, the association's president.
Dombi said his group has advised agencies that these cuts "may not be a good move" medically (patients might deteriorate without therapy and end up in the emergency room or the hospital) or "from a business perspective." (If more patients end up worse off and going to emergency rooms or are hospitalized, that will reflect poorly on agencies and may affect referrals.)
The American Occupational Therapy Association is also surveying members. Based on 135 responses to date, occupational therapists and assistants are being laid off, asked to decrease the number of visits to clients and directed to provide services for less than 30 days, said Sharmila Sandhu, vice president of regulatory affairs.
In an email, a spokesman for the Centers for Medicare & Medicaid Services said the federal agency is "monitoring the implementation of the PDGM, including therapy service provision, at the national, regional, state, and agency level." (A similar system for skilled nursing facilities that provide rehabilitation was implemented in October.)
"We do not expect home health agencies to under-supply care or services; reduce the number of visits in response to payment; or inappropriately discharge a patient receiving Medicare home health services as these would be violations of [Medicare] conditions of participation," the spokesman wrote.
Yet that appears to be happening.
Carrie Madigan, an occupational therapist who worked for Kindred at Home in Omaha, Nebraska, said she was laid off in November as the company — the largest U.S. home health provider — cut therapy positions nationwide. Her agency lost four occupational therapists and three physical therapists last year as it implemented layoffs and cut back on therapy visits in anticipation of PDGM, she said.
A company spokesperson wrote in an email that Kindred at Home doesn't discuss staffing decisions. The person maintained that its "focus always has been, and will remain, on providing the right care at the right time for our patients."
Several large agencies said they had prepared extensively for PDGM. The Visiting Nurse Service of New York has trained coaches to work with Medicare home health patients and is bringing remote monitoring equipment into people's homes to track their progress, said Susan Northover, senior vice president of patient care services. The agency provided home health services to more than 30,000 Medicare beneficiaries in and around New York City last year.
Under PDGM, there are 432 ways of classifying patients. For each, the group is recommending "the amount of time we think a patient should be receiving care," based on extensive analysis of historical data, Northover said. "I absolutely see no change in how we will provide therapy going forward."
Encompass Health of Dallas serves about 45,000 home health patients in 33 states, most of them covered by Medicare. It's using an artificial intelligence tool to predict what kind of services, and how many, patients will need. "We've been able to eliminate some wasted visits" and become more efficient, said Bud Langham, chief strategy and innovation officer.
Langham said he was disturbed by reports he was hearing that "agencies are taking a very draconian approach to PDGM."
"That's dangerous, and it's going to lead to worse outcomes," he said.
In Frederick, Maryland, the Holloways have struggled since SpiriTrust terminated Anthony's services Nov. 11. Four other agencies rejected Anthony as a patient. Without help stretching his limbs and strengthening his core muscles, he's in more pain and has four new bedsores on his backside.
"He's developing scoliosis, and he's slumping in his wheelchair," Del said. "And he can't get comfortable at night. We spend hours trying to reposition him so he's able to sleep."
Before his services were cut off, Anthony had been getting three hours of physical therapy, two hours of occupational therapy, one hour of speech therapy per week, plus a visit every other week from a registered nurse.
In an email, Hull of SpiriTrust wrote that "individualized plans of care are developed specific to the needs of each client" and that "PDGM did not influence any decision made specific to this particular client's plan of care."
Before retiring in 2016 because of ill health, Anthony was chief of police for the U.S. Bureau of Engraving and Printing. "It seems to me nobody cares about what's happening to me," he told me. "It makes me feel terrible — awful, less than human."
Several times, health care providers have suggested that Anthony move to a nursing home, Del said.
"He'd have to go to a ventilator facility, and there's only one in my area, and everyone in it was really old and drugged when I visited," she said. "How can he live in a place like that when he can't use his arms or hands or operate a call button?"
There is a glimmer of hope. A few days before I spoke with the couple, a fifth home care agency said it would initiate services: two hours each of physical and occupational therapy, one hour of speech therapy and one hour for a home health aide every week.
"I'm relieved, but I also feel I'm walking on eggshells," Del said, "since they can terminate you at any time."
Hundreds of hospitals across the nation, including a number with sterling reputations for cutting-edge care, will be paid less by Medicare after the federal government pronounced that they had higher rates of infections and patient injuries than others.
The Centers for Medicare & Medicaid Services on Wednesday identified 786 hospitals that will receive lower payments for a year under the Hospital-Acquired Conditions Reduction Program, a creation of the Affordable Care Act. The penalties are designed to encourage better care without taking the extreme step of tossing a hospital out of the Medicare and Medicaid programs, which would drive most hospitals out of business.
Now in their sixth year, the punishments, known as HAC penalties, remain awash in criticism from all sides. Hospitals say they are arbitrary and unfair, and some patient advocates believe they are too small to make a difference. Research has shown that while hospital infections are decreasing overall, it is hard to attribute that trend to the penalties.
"There is limited evidence that this is the kind of program that makes things better," said Andrew Ryan, a professor of health care management at the University of Michigan School of Public Health.
Under the law, Medicare is mandated each year to punish the quarter of general care hospitals that have the highest rates of patient safety issues. The government assesses the rates of infections, blood clots, sepsis cases, bedsores, hip fractures and other complications that occur in hospitals and might have been prevented. Hospitals can be punished even if they have improved from past years.
Medicare cuts every payment by 1% for those hospitals over the course of the federal fiscal year, which started in October and runs through the end of September.
Since the program's onset, 1,865 of the nation's 5,276 hospitals have been penalized for at least one year, according to a Kaiser Health News analysis.
Many hospitals escaped penalties because they were automatically excluded from the program, either because they solely served children, veterans or psychiatric patients, or because they have special status as a "critical access hospital" for lack of nearby alternatives for people needing inpatient care.
This year, 145 hospitals received their first penalty, the analysis found. Conversely, 16 that had been penalized every year since the start of the program avoided punishment. Those included Novant Health Presbyterian Medical Center in Charlotte, North Carolina, and Tampa General Hospital in Florida.
Novant Health said in a statement it had lowered infection rates by being more discriminating in using urinary catheters and central lines, standardizing the steps to prevent infections in surgeries, and getting staffers to wash their hands more.
This year, Medicare penalized seven of the 21 hospitals on the U.S. News Best Hospitals Honor Roll, an annual ranking often used as a proxy for identifying the most prestigious facilities.
Those penalized "honor roll" hospitals were UPMC Shadyside in Pittsburgh; Ronald Reagan UCLA Medical Center in Los Angeles; Keck Hospital of USC; Stanford Health Care's main hospital in Northern California; UCSF Medical Center in San Francisco; NewYork-Presbyterian/Weill Cornell Medical Center in Manhattan; and the Mayo Clinic's hospital in Phoenix.
Only UCSF commented to KHN on the penalties, blaming its high HAC rates on its thoroughness in identifying infections and reporting them to the government.
"That commitment will naturally make our rates appear to be higher than some other hospitals," UCSF said in a written statement.
Three other "honor rollees" have avoided punishment in all six years of the penalties: Massachusetts General Hospital, the Mayo Clinic's flagship hospital in Rochester, Minnesota, and Penn Presbyterian Medical Center in Philadelphia.
Johns Hopkins Hospital in Baltimore has also avoided penalties every year, but Medicare excludes all Maryland hospitals from the program because it pays them through a different arrangement than for the rest of the states.
The federal Agency for Healthcare Research and Quality last year estimated there were about 2.5 million hospital-acquired conditions in 2017. Rates have been dropping by about 4.5% a year, the agency calculated, with the biggest decreases since 2014 in infections from Clostridioides difficile, known as C. diff.; bad reactions to medications and postoperative blood clots.
Maryellen Guinan, a senior policy analyst at America's Essential Hospitals, the association of about 300 safety-net hospitals said, "Our folks even before the HAC program was in existence have been doing a lot to put in infection controls."
However, a study Ryan and colleagues published in Health Affairs in November analyzed a clinical surgical data registry used by 73 Michigan hospitals and concluded that hospital complications rates were higher than what the government has estimated. The study agreed rates were dropping but said there was no proof the HAC penalties played a role.
Leah Binder, president of The Leapfrog Group, a patient safety organization, said the complex formula Medicare uses to allot penalties is too confusing and the penalty set by Congress is too small to be effective.
"Americans expect 100% of hospitals to go to the ends of the Earth to prevent needless patient suffering, and singling out some hospitals for a little 1% ding isn't enough," she said.
CMS did not respond to requests for comment for this story.
The Association of American Medical Colleges said 45% of its members were penalized this year — nearly double the rate of other hospitals.
Dr. Atul Grover, the association's executive vice president, said teaching hospitals incurred penalties more often because they often treat some of the sickest people and Medicare's calculations did not sufficiently take into account the especially weakened condition of their patients, which make them more susceptible to infections.
"There are still issues with the methodology, surveillance bias, and the inability to fully risk adjust for our institutions that have patients who are sicker" and are more likely to have multiple medical problems, Grover said in an email.
When the first U.S. case of a new coronavirus spreading throughout China was confirmed last week in Washington state, public health workers were well prepared to respond, building on lessons learned during the outbreak of measles that sickened 87 people in the state in 2019.
As of Monday, the Centers for Disease Control and Prevention had confirmed five cases of infection from the new coronavirus in the U.S., including two in California, one in Illinois and one in Arizona. All were linked to people who traveled to the Wuhan region in China. More than a hundred people are under investigation for the new coronavirus in 26 states, according to the CDC.
The first U.S. patient, an unidentified man in his 30s, had traveled to the Wuhan area at the end of last year. He fell ill shortly after flying back to the U.S., where he lives north of Seattle.
In Washington state, health agencies have identified more than 60 people who came in close contact with the infected man before he was hospitalized in Everett, a city in Snohomish County outside Seattle.
The case quickly grabbed national headlines, but it didn't rattle the local health clinic workers who had recently geared up to handle another infectious disease.
"The measles really kind of enlightened everybody about 'Wow, there are a lot of things out there that can be really contagious and can get you really sick, really fast,'" said Tové Skaftun, the chief nursing officer for the Community Health Center of Snohomish County.
Skaftun said she's glad that last year's outbreak forced them to improve how they approach these situations.
"We've recently grown our infection-control program so it's kind of at the forefront of a lot of what we do," said Skaftun.
She said that effort focused on educating staff about the correct precautions to take when faced with different kinds of infectious diseases — including wearing protective air-purifying respirators when in contact with patients who may be infected.
Measles is one of the most contagious viruses and can stay in the airspace of a room for up to two hours. In contrast, public health experts believe the new coronavirus requires close contact to spread between humans.
"Coronaviruses are generally transmitted through sneezing, coughing and close contact with individuals, so those are the types of criteria we use to identify people at risk," saidDr. Kathy Lofy, Washington's state health officer.
She said previous outbreaks and most recently the measles outbreak led to "a lot of preparation by our health care system partners around how to appropriately … protect themselves from highly infectious pathogens."
In Washington, public health workers are daily calling people who have come in contact with the confirmed case and asking about symptoms such as a fever or cough. Those being monitored are not required to be isolated unless they develop symptoms.
The patient in Seattle first went to a local health clinic when he started showing symptoms. Once it became clear he was at risk for coronavirus, he was transported to Providence Regional Medical Center in Everett, a hospital north of Seattle, where he was treated in isolation. He remains in "satisfactory" condition, according to the Washington State Department of Health.
Dr. Amy Compton-Phillips, thechief clinical officerat Providence St. Joseph Health, which runs that hospital, said it was set up to handle high-level infectious pathogens during the Ebola scare of 2014.
"All types of infrastructure had been put in place to ensure that when something came around we'd be ready," said Compton-Phillips.
Those include specialized gurneys to keep patients isolated while they're wheeled around the hospital, robots that can listen to patients' lungs and take blood pressure, and rooms with negative-pressure airflow so germs aren't circulated throughout the rest of the hospital.
In Snohomish County, health workers are on alert for signs that any patients could be at risk of carrying the new virus. At the Community Health Center of Snohomish County, signs posted in the waiting room tell patients to notify staff if there's any indication they could have been exposed.
"We do have patients that are calling in, and we do have patients that are talking about it with their provider staff," said head nurse Skaftun.
Skaftun said it's natural that some patients have been asking questions, but like other health providers in the area, her clinic had all the right protocols and infection-control gear at the ready when they first heard the news.
Last year, Clark County, Washington, which is in suburban Portland, Oregon, had an alarming outbreak of 71 cases of measles, mostly among unvaccinated children. In the Seattle area, the outbreak was smaller, and Snohomish County had just one case of measles. Still, the contagion containment efforts were statewide and can be drawn on now.
Federal health officials have been advisinghealth care workers to take "airborne precautions" and wear protective gear if they are near a patient who is under investigation for the new coronavirus. At the moment, it appears considerably less dangerous than the flu.
"At this time in the U.S., this virus is not spreading in the community," said Dr. Nancy Messonnier, director of the National Center for Immunization and Respiratory Diseases at the Centers for Disease Control and Prevention, at a news conference.
The Washington patient was diagnosed after samples were sent to CDC headquarters in Atlanta. The CDC has developed a test to diagnose the new coronavirus.
"We are refining the use of this test so we can provide optimal guidance to states and laboratoriums on how to use it," said Messonnier. The agency plans to distribute those to public health labs around the country "as fast as possible" in the coming weeks, she said.
"There are a lot of unknowns," said Janet Baseman, a professor of epidemiology at the University of Washington. "The best thing public health can do now is assume that it will be similar to other coronavirus outbreaks we have seen in recent years until proven otherwise."
"Being overprepared is the name of the game," she said.
With only one case of the coronavirus from China confirmed so far in Washington, Baseman said it's much easier for public health workers to do contact tracing than it was last year when they faced the measles outbreak, which included multiple cases.
"It was a really different situation because there were also a lot more exposed people," said Baseman.
This story is part of a partnership between NPR and Kaiser Health News.
California Gov. Gavin Newsom was a single-payer candidate.
The Democrat campaigned hard for the creation of one public insurance program for all Californians. And within hours of taking office last year, he called on the federal government to allow California and other states to create single-payer programs.
On Monday, some of the biggest names in California health care policy are convening in Sacramento to fulfill that promise.
Or not.
Those who hope this meeting could lead to the end of private insurance and the creation of a state-based "Medicare for All"-type system should probably temper their expectations.
"The goal of this commission is likely to demonstrate political momentum without making any firm policy commitments," said Thad Kousser, chair of the political science department at the University of California-San Diego.
The commission will discuss how to get every Californian covered — with an emphasis on single-payer, a system in which health care is paid for by a single public authority.
But the reality is that single-payer is unlikely to materialize anytime soon, given the Trump administration's opposition to the concept and the exorbitant cost of completely overhauling the health care system.
Perhaps most important, members of the commission don't agree on what the commission should accomplish.
Single-payer "is one of the key places to look, but not the only place," said California Health and Human Services Secretary Dr. Mark Ghaly. Newsom's office, which declined to comment on the commission, directed questions to Ghaly, who will chair the panel.
But there will be powerful voices on the commission that are firmly committed to creating a single-payer system for the state.
Stephanie Roberson, the government relations director for the California Nurses Association, won't be on the commission herself, but her union will have a representative on the panel. The union is a loud and insistent advocate for single-payer.
"There is absolutely universal concern across this organization that this commission could be used to slow-walk single-payer," Roberson said. "More often than not, a bill becomes a study or a commission and no one ever hears about it again."
The commission plans to issue two public reports, one in July 2020 and the other in February 2021. The first will detail the current state of health care coverage in California and the second will explain the nuts and bolts of how to get a single-payer system up and running.
For the single-payer advocates on the commission, these questions have already been asked and answered.
A 2017 special legislative committee investigated single-payer in California and issued a report on California's uninsured population that outlined several options for covering them, such as how to implement and pay for single-payer.
Much of that work is now being repeated. The state of California awarded a $2.5 million contract to a group from the University of California to conduct research and analysis for the new commission and draft its reports. These are the same people who wrote the last report for the legislative committee.
But Deborah Kelch, executive director of the nonprofit and nonpartisan Insure the Uninsured Project, said the older findings might not reflect today's reality.
"Those all predate our current coverage landscape, so it's a good time for policymakers and a commission like this one to really take a look at what's true now," she said.
No one thinks single-payer would be cheap or easy to implement, and estimates vary on how much it would cost. A 2017 legislative estimate put the price tag for California at around $400 billion annually. A newer analysis released in mid-January focused instead on savings and concluded that savings from single-payer systems would outweigh the costs.
Whatever the commission decides to do, one huge hurdle to get single-payer up and running in the state remains: President Donald Trump.
Seema Verma, head of the Centers for Medicare & Medicaid Services, said she would reject any state plans to use federal dollars to implement a single-payer system.
But the hostility from the federal government doesn't mean the commission's work is meaningless, said Scott Graves, director of research for the California Budget & Policy Center. Instead, it could give the commission time to get a single-payer plan ready for a different president, he said.
"If we decide as a state that we really want to move towards a single-payer health care financing system, we will have done our homework," Graves said.
Dr. Robert Ross, president and CEO of the California Endowment, a foundation that focuses on expanding health care access among Californians, sees a path forward whether Trump wins or loses in November.
Ross, a member of the commission, said he's willing to look at all options to get the remaining 7.2% of uninsured Californians covered, not just single-payer. For instance, California has expanded Medi-Cal eligibility to people who are in the country illegally, and created state-based subsidies to help people buy private insurance.
"I'm sure there are others on the commission resolutely focused on single-payer," he said. "That's fine. We should have that conversation and that debate within the boundaries of the commission's work."
Jennifer Kent, former director of the state Department of Health Care Services, said it's vital to continue the process of debates, research and public meetings. They will bring in more people to work out the thorny details of what could be a massive overhaul of the health care system, she said.
"Democracy is messy," said Kent, who is now a health care consultant. "The people who say we already know what the answer is — if we knew what the answer is, it would have been done already."
There's a deadly virus spreading from state to state. It preys on the most vulnerable, striking the sick and the old without mercy. In just the past few months, it has claimed the lives of at least 39 children.
The virus is influenza, and it poses a far greater threat to Americans than the coronavirus from China that has made headlines around the world.
"When we think about the relative danger of this new coronavirus and influenza, there's just no comparison," said Dr. William Schaffner, a professor of preventive medicine and health policy at Vanderbilt University Medical Center. "Coronavirus will be a blip on the horizon in comparison. The risk is trivial."
To be sure, the coronavirus outbreak, which originated last month in the Chinese city of Wuhan, should be taken seriously. The virus can cause pneumonia and is blamed for more than 800 illnesses and 26 deaths. British researchers estimate the virus has infected 4,000 people.
A second person in the U.S. who visited China has been diagnosed with the Wuhan virus, officials from the Centers for Disease Control and Prevention said Friday. Public health workers are monitoring 63 additional patients from 22 states.
Influenza rarely gets this sort of attention, even though it kills more Americans each year than any other virus, said Dr. Peter Hotez, a professor of pediatrics, molecular virology and microbiology at Baylor College of Medicine in Houston.
Influenza has already sickened at least 13 million Americans this winter, hospitalizing 120,000 and killing 6,600, according to the CDC. And flu season hasn't even peaked. In a bad year, the flu kills up to61,000 Americans.
Worldwide, the flu causes up to 5 million cases of severe illness worldwide and kills up to 650,000 people every year, according to the World Health Organization.
And yet, Americans aren't particularly concerned.
Fewer than half of adults got a flu shot last season, according to the CDC. Even among children, who can be especially vulnerable to respiratory illnesses, only 62% received the vaccine.
If Americans aren't afraid of the flu, perhaps that's because they are inured to yearly warnings. For them, the flu is old news. Yet viruses named after foreign places — such as Ebola, Zika and Wuhan — inspire terror.
"Familiarity breeds indifference," Schaffner said. "Because it's new, it's mysterious and comes from an exotic place, the coronavirus creates anxiety."
Some doctors joke that the flu needs to be rebranded.
"We should rename influenza; call it XZ-47 virus, or something scarier," said Dr. Paul Offit, director of the Vaccine Education Center at Children's Hospital of Philadelphia.
Measles in the Democratic Republic of Congo has killed 5,000 people in the past year — more than twice as many as Ebola. Yet UNICEF officials have noted that the measles, which many Americans no longer fear, has gotten little attention. Nearly all the measles victims were children under 5.
Some people may worry less about the flu because there's a vaccine, whose protection has ranged from 19% to 60% in recent years. Simply having the choice about whether or not to receive a flu shot can give people an illusion of control, Schaffner said.
But people often feel powerless to fight novel viruses. The fact that an airplane passenger spread SARS to other passengers and flight crew made people feel especially vulnerable.
Because the Wuhan virus is new, humans have no antibodies against it. Doctors haven't had time to develop treatments or vaccines.
The big question, so far unknown, is just how easily the virus is transmitted from an infected person to others. The WHO this week opted not to declare the Wuhan outbreak aninternational health emergency. But officials warn the outbreak hasn't peaked. Each patient with the new coronavirus appears to be infecting about two other people.
By comparison, patients with SARS, or severe acute respiratory syndrome, spread the infection to an average of two to four others. Each patient with measles— one of the most contagious viruses known to science — infects 12 to 18 unvaccinated people.
Health officials worry that the new coronavirus could resemble SARS — which appeared suddenly in China in 2002 and spread to 26 countries, sickening 8,000 people and killing 774, according to the WHO.
The U.S. dodged a bullet with SARS, Schaffner said. Only eight Americans became infected, and none died, according to the CDC. Yet SARS caused a global panic, leading people to shutter hotels, cancel flights and close businesses.
Coronaviruses can be unpredictable, said Dr. Michael Osterholm, director of the Center for Infectious Disease Research and Policy at the University of Minnesota. While some patients never infect anyone else, people who are "super spreaders" can infect dozens of others.
At Seoul's Samsung Medical Center in 2015, a single emergency room patient infected 82 people — including patients, visitors and staff — with a coronavirus called MERS, or Middle East Respiratory Syndrome. The hospital partly shut down to control the virus.
"This is one of the finest medical centers in the world, on par with the Cleveland Clinic, and they were brought to their knees," Osterholm said.
Yet MERS has never posed much a threat to the U.S.
Only two patients in the U.S. — health care providers who had worked in Saudi Arabia — have ever tested positive for the virus, according to the CDC. Both patients survived.
Hotez, who is working to develop vaccines against neglected diseases, said he worries about unvaccinated children. Most kids who die from the flu haven't been immunized against it, he said. And many were previously healthy.
"If you're worried about your health, get your flu vaccination," Hotez said. "It's not too late."
A highly publicized approach to lowering health costs failed to pass rigorous study this month, but hospitals, insurers and government health programs don't intend to give up on the idea.
The "hotspotting" model was pioneered in Camden, New Jersey, in 2002 and inspired dozens of similar projects around the country, many financed by millions of dollars from the government and private foundations. The model focuses on people who face social barriers such as homelessness or drug addiction and use the hospital multiple times a year, typically for avoidable complications from chronic diseases. The participants work with doctors, social workers and nurses for individual help, seeking to prevent future hospital admission and extra expenses down the road.
A study in the New England Journal of Medicine published this month confirmed that repeat hospitalizations dropped for participants in the Camden program but the result was no better than the results from a group of patients who did not get the intensive care coordination.
A different study, released Wednesday, showed that a similar, multibillion-dollar experiment in California yielded even more discouraging preliminary results: Participants were hospitalized at more than double the rate of patients who were not enrolled in the program.
State and federal policymakers were attracted to the hotspotting model because they saw it as a possible solution for this intractable reality: Just 5% of patients account for half of all health spending.
The disappointing results from Camden caused some angst among health officials working on the model from Oregon to North Carolina — even before the California study was released.
"The study should give everyone who is involved in hotspotting a chance to pause and really reflect on the programs that they are doing," said Dr. Amit Shah, chief medical officer at CareOregon, a large Medicaid managed-care insurer that for a decade has targeted some of these high-cost patients.
But "to stop now would be foolish," said Susan Cooper, chief integration officer for Regional One Health, a Memphis, Tennessee, health system that launched a program in 2018 based on the Camden model. It is geared to patients who have the most emergency room and hospital visits because of unmet social needs such as hunger and housing.
Using nurses and social workers, the hospital pairs up these "super-utilizer" patients with community resources such as housing, transportation and meals as well as connecting them to primary care. From April 2018 through last month nearly 350 people have enrolled in the program and the hospital said it has saved more than $9 million than would have been expected to be spent on them by reducing ER visits and hospital admissions.
A Medicaid experiment similar to the Camden approach may also expand in the most populous state in the nation — at great cost and despite disappointing initial results.
As part of his 2020-21 state budget proposal, California Gov. Gavin Newsom wants to add $582.5 million to Medi-Cal, the state's Medicaid program, to increase intensive, comprehensive care management to high-needs, high-risk patients, including homeless people and those getting out of jail or prison. If approved by the state legislature, the infusion would also fund services designed to decrease reliance on expensive hospital visits and emergency service transportation.
The move would expand the state's $3 billion, five-year Medicaid experiment called "Whole Person Care," which began in 2016 and provides participants with social and medical services, such as substance abuse treatment and recuperative care after hospital stays. In most cases, California is creating services for participants in addition to connecting people to existing programs.
But a new report by researchers at the UCLA Center for Health Policy Research suggests that California's experiment has resulted in more participant hospitalizations, despite offering comprehensive services.
The study found that, two years into the experiment, there was no significant change in emergency department visits for participants compared with a similar group of patients who were not part of the program. But hospitalizations went up for both groups, with participants getting admitted at more than twice the rate of the control group: 17.47 inpatient admissions per 1,000 enrollees, compared with 7.41 admissions per 1,000 for the control group.
Dana Durham, chief of the policy and medical monitoring branch of the state Department of Health Care Services, said that the data is preliminary and that she expects hospitalizations to drop the longer patients are in the program.
"There hasn't been enough enrollment in the program to make this comparison one that we have confidence in yet," she said.
Clemens Hong, director of the Whole Person Care pilot in Los Angeles, which has served more than 46,000 people and has a five-year budget of more than $1 billion, could not be reached for comment after the results were released Wednesday.
Prior to the release, Hong said it would take time to see positive results because the participant population is "much sicker than most people understand or realize." He also said evaluations of these programs shouldn't focus exclusively on hospitalizations, but should also consider outcomes such as how well they increase employment or reduce time spent living on the street.
"One of the key lessons is that it can't just be medically focused," Hong said about the results of the Camden study.
Camden Coalition officials agree. They say that, although their work was originally designed to help people find safety-net services, they learned that sometimes those resources were not available. The coalition now has expanded its outreach and set up more partnerships, including efforts to start a housing program.
Looking For 'Hot Spots'
The Camden Coalition, which provided services for 194 people last year, was founded by Dr. Jeffrey Brenner, a family doctor, who was looking to improve health care in one of the poorest cities in the country.
Using medical billing data from hospitals in Camden, Brenner located "hot spots" that had larger numbers of high-cost patients — even down to the city block. These patients, he found, repeatedly showed up in emergency rooms and doctors' offices. They often had physical health issues such as diabetes, asthma and other chronic illnesses that were compounded by psychological and social issues such as anxiety and homelessness.
Earlier studies of the initiative primarily measured how patients in the program used services before and then after being enrolled. By coordinating the medical care and social services these patients needed, Brenner and his group were able to cut down the number of rehospitalizations.
The New England Journal of Medicine study, conducted by researchers at the Massachusetts Institute of Technology and published Jan. 9, confirmed that the program over six months reduced readmissions by nearly 40%. But a group of similar patients who did not get the interventions had a similar drop.
This type of randomized-control trial, the gold standard in clinical medicine, is rarely used in health policy studies, partly due to the cost.
Shah of CareOregon said the study results prove there is no single solution that will work in every community for every type of patient.
"There is no one magic bullet," Shah said. "The study confirmed there is a population of super utilizers that will not go away" just through these community efforts alone. He stressed local, state and federal policy changes are needed to fix social and legal challenges that influence patients' health.
Camden Coalition officials said the results were disappointing but noted they have made major changes to the hotspotting efforts since the study trial ended in 2017. This includes efforts to help participants find stable housing and legal services to break down barriers to Medicaid and other benefits.
"We have already made some pivots," said the coalition's CEO, Kathleen Noonan.
She said people should not take away from the study "that focusing on social determinants of health and all those efforts are moot." The study showed some positive benefits, including how participants were more likely to obtain food stamp benefits compared with those in the control group.
"To paraphrase Mark Twain, reports of the death of the hotspotting model are greatly exaggerated," said Rutgers University professor Joel Cantor, director of the Center for State Health Policy, before the California results dropped. Cantor has worked closely with the coalition. "This is a single study, focusing mainly on one of many possible outcomes, in a single location."
Brenner, who won a MacArthur Foundation fellowship — known as a "genius" grant — in 2013, said hotspotting efforts need to keep evolving.
"There are glimmers of things that work, and we need to keep at this. It is a solvable problem," said Brenner.
When he first started the coalition, Brenner said, he hoped just helping people navigate the health system would improve their health and lower costs. But that approach faced shortcomings when services such as addiction treatment and housing assistance were lacking.
"It's not as simple as just navigating and coordinating," he said.
"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.