United States, deaths of despair* per 100,000 people
80
OxyContin painkiller
introduced
Whites aged
45-64
70
2. The downward trend
ended earlier among
middle-aged whites
1. Deaths of despair were
declining until the opioid
epidemic hit
60
50
All
40
30
Pre-1990s trend
20
1979
85
90
95
2000
05
10
15
19
*Suicide, drug overdoses or alcohol-related
In 2015 Anne Case and Angus Deaton published a landmark paper on death rates in America. The economists found that mortality had been rising among middle-aged whites, thanks to a surge in drug overdoses, alcohol-related illness and suicides—causes they deemed “deaths of despair”.
Other scholars have asked whether this category is useful. One study by Congressional researchers in 2019 found that 70% of the rise in deaths-of-despair rates came from drugs alone. It also showed that the rise in mortality did not coincide with increasing economic malaise or self-reported unhappiness. Were these untimely deaths really evidence of anguish, or merely the result of a raging opioid epidemic?
A new paper by Tyler Giles of Wellesley, Daniel Hungerman of Notre Dame and Tamar Oostrom of Ohio State bolsters the case that deaths of despair stem in part from weakening social ties. It shows that mortality from these causes among middle-aged whites stopped falling around 1990—well before the rise in opioid use.
What changed at that time? The authors studied attendance at religious services. They found that states with more participation had fewer deaths of despair, and that the faster religious attendance fell in a state, the more such deaths rose. A paper in jama in 2020 also showed that of 110,000 health workers, those who went to services were less likely to die from these causes.
Share attending religious services at least once a week, %
United States, six-year moving average*
35
65 and
over
30
Female
25
White
20
45-64
26-44
Non-white
15
Male
0-25
10
0
18
1980
90
2000
10
18
1980
90
2000
10
18
1980
90
2000
10
*Data not available for every year
United States, 1986-88
Deaths of despair* per 100,000 people
35
Arizona
California
Florida
30
Oregon
Colorado
Pennsylvania
Michigan
25
Georgia
Massachusetts
Kentucky
Tennessee
New York
Oklahoma
Louisiana
Mississippi
Connecticut
20
Minnesota
North Dakota
15
← Lower
Higher →
Religious-service attendance
*Suicide, drug overdoses or alcohol-related
This pattern does not prove that religious participation wards off deaths of despair. But the authors tried to isolate the impact of religion by studying blue laws, which banned commerce on Sundays to encourage churchgoing. Whenever a state repealed a blue law, religious attendance tended to plummet, creating a natural experiment. And sure enough, deaths of despair rose unusually quickly in the few years following these repeals. Although legalising alcohol sales on Sundays may account for some of this trend, the biggest increase in mortality came from suicides.
Strikingly, the study found that private prayer was not linked to lower deaths of despair. This suggests that the risk reduction stems not from belief, but rather from the interpersonal connections that organised religion provides. Although secular groups like charities or labour unions also produce such “social capital”, the jama authors say that faith-based networks provide unusually potent protection.■7
Chart source: “Opiates of the masses? Deaths of despair and the decline of American religion”, by T. Giles, D.M. Hungerman and T. Oostrom, NBER, 2023, working paper
Amid the new threat of the coronavirus, an old one was also quietly on the rise: More people have suffered severe sepsis in California hospitals in recent years — including a troubling surge in patients who got sepsis inside the hospital itself, state data show.
Sepsis happens when the body tries to fight off an infection and ends up jeopardizing itself. Chemicals and proteins released by the body to combat an infection can injure healthy cells as well as infected ones and cause inflammation, leaky blood vessels and blood clots, according to the National Institutes of Health.
It is a perilous condition that can end up damaging tissues and triggering organ failure. Across the country, sepsis kills more people annually than breast cancer, HIV/AIDS and opioid overdoses combined, said Dr. Kedar Mate, president and chief executive of the Institute for Healthcare Improvement.
“Sepsis is a leading cause of death in hospitals. It’s been true for a long time — and it’s become even more true during the pandemic,” Mate said.
The bulk of sepsis cases begin outside of hospitals, but people are also at risk of getting sepsis while hospitalized for other illnesses or medical procedures. And that danger only grew during the pandemic, according to state data: In California, the number of “hospital-acquired” cases of severe sepsis rose more than 46% between 2019 and 2021.
Severe sepsis acquired in California hospitals
Cases of "hospital acquired" sepsis rose during the pandemic, state data show.
Number of cases
30,495
Emily Alpert Reyes
LOS ANGELES TIMES
Experts say the pandemic exacerbated a persistent threat for patients, faulting both the dangers of the coronavirus itself and the stresses that hospitals have faced during the pandemic. The rise in sepsis in California came as hospital-acquired infections increased across the country — a problem that worsened during surges in COVID hospitalizations, researchers have found.
“This setback can and must be temporary,” said Lindsey Lastinger, a health scientist in the CDC’s Division of Healthcare Quality Promotion.
Physicians describe sepsis as hard to spot and easy to treat in its earliest stages, but harder to treat by the time it becomes evident. It can show up in a range of ways, and detecting it is complicated by the fact that its symptoms — which can include confusion, shortness of breath, clammy skin and fever — are not unique to sepsis.
There’s no “gold standard test to say that you have sepsis or not,” said Dr. Santhi Kumar, interim chief of pulmonology, critical careand sleep medicine at Keck Medicine of USC. “It’s a constellation of symptoms.”
Christopher Lin, 28, endured excruciating pain and a broiling fever of 102.9 degrees Fahrenheit at homebefore heading to the Kaiser Permanente Los Angeles Medical Center. It was October 2020 and the hospital looked “surreal,” Lin said, with a tent set up outside and chairs spaced sparsely in the waiting room.
His fever raised concerns about COVID-19, but Lin tested negative. At one point at the emergency department his blood pressure abruptly dropped, Lin said, and “it felt like my soul had left my body.”
Lin, who suffered sepsis in connection with a bacterial infection, isn’t sure where he first got infected. Days before he went to the hospital, he had undergone a quick procedure at urgent care to drain a painful abscess on his chest, and got the gauze changed by a nurse the following day, he said.Such outpatient procedures aren’t included in state data on “hospital-acquired” sepsis.
Someone with sepsis might have a high temperature or a low one, a heart rate that has sped or slowed, a breathing rate that is high or low.
It can result from bacteria, fungal infections, viruses or even parasites — “and the challenge is that when someone walks into the emergency department with a fever, we don’t know which of those four things they have,” said Dr. Karin Molander, an emergency medicine physician and past board chairof Sepsis Alliance. Treatment can vary depending on what is driving the infection that spurred sepsis,but antibiotics are common because many cases are tied to bacterial infections.
The pandemic piled on the risks: A coronavirus infection can itself lead to sepsis, and the virus also ushered more elderly and medically vulnerable people into hospitals who are at higher risk for the dangerous condition, experts said. Nearly 40% of severe sepsis patients who died in California hospitals in 2021 were diagnosed with COVID-19, according to state data. Some COVID-19 patients were hospitalized for weeks at a time, ramping up their risk of other complications that can lead to sepsis.
“The longer you’re in the hospital, the more things happen to you,” said Dr. Maita Kuvhenguhwa, an attending physician in infectious disease at MLK Community Healthcare. “You’re immobilized, so you have a risk of developing pressure ulcers” — not just on the backside, but potentially on the face under an oxygen device — “and the wound can get infected.”
“Lines, tubes, being here a long time — all put them at risk for infection,” Kuvhenguhwa said.
Experts said the pandemic may have also pulled away attention from other kinds of infection control, as staff were strained and hospital routines were disrupted. California, which is unusual nationwide in mandating minimum ratios for nurse staffing, allowed some hospitals to relax those requirements amid the pandemic.
Nurses juggling more patients might not check and clean patients’ mouths as often to help prevent bacterial infections, Kumar said. Mate said that hospitalized patients might not get their catheters changed as often amid staff shortages, which can increase the risk of urinary tract infections.
Hospitals might have brought in traveling nurses to help plug the gaps, but “if they don’t know the same systems, it’s going to be harder for them to follow the same processes” to deter infections, said Catherine Cohen, a policy researcher with the RAND Corp.
Armando Nahum, one of the founding members of Patients for Patient Safety U.S., said that pandemic restrictions on hospital visitors may have also worsened the problem, preventing family members from being able to spot that a relative was acting unusually and raise concerns.
Molander echoed that point, saying that it’s important for patients to have someone who knows them well and might be able to alert doctors, “My mom has dementia, but she’s normally very talkative.”
Sepsis has been a longstanding battle for hospitals: One-third of people who die in U.S. hospitals had sepsis during their hospitalization, according to research cited by the CDC. But Mate argued that sepsis deaths can be reduced significantly “with the right actions that we know how to take.”
In Pennsylvania and New Jersey, Jefferson Health began rolling out a new effort to combat sepsis in fall of 2021 — just before the initial Omicron wave began to hit hospitals.
Its system includes predictive modeling that uses information from electronic medical records to alert clinicians that someone might be suffering from sepsis. It also set up a “standardized workflow” for sepsis patients so that crucial steps such as prescribing antibiotics happen as quickly as possible,hospital officials said.
The goal was to lessen the mental burden on doctors and nurses pulled in many directions, said Dr. Patricia Henwood, its chief clinical officer. “Clinicians across the country are strained, and we don’t necessarily need better clinicians — we need better systems,” she said.
Jefferson Health credits the new system with helping to reduce deaths from severe sepsis by 15% in a year.
In New York state, uproar over the death of 12-year-old Rory Staunton led to new requirements for hospitals to adopt protocols to rapidly identify and treat sepsis and report data to the state. State officials said the effort saved more than 16,000 lives between 2015 and 2019, and researchers found greater reductions in sepsis deaths in New York than in states without such requirements.
If your child gets sick, he said, “you shouldn’t have to wonder if the hospital on the right has sepsis protocols and the one on the left doesn’t,” said Ciaran Staunton, who co-founded the organization End Sepsis after the death of his son. His group welcomed the news when federal agencies were recently directed to develop “hospital quality measures” for sepsis.
Such a move could face opposition. Robert Imhoff, president and chief executive of the Hospital Quality Institute — an affiliate of the California Hospital Assn. — contended that expanding the kind of requirements in effect in New York was unnecessary.
“I don’t think hospitals need to be mandated to provide safe, quality care,” Imhoff said.
State data show that severe sepsis — including cases originating both outside and inside hospitals — has been on the rise in California over the last decade, but Molander said the long-term increase may be tied to changes in reporting requirements that led to more cases being tracked. California has yet to release new data on severe sepsis acquired in hospitals last year, and is not expected to do so until this fall.
For Lin, surviving sepsis left him determined to make sure that the word gets out about sepsis — and not just in English. In the hospital, he had struggled to explain what was happening to his mother, who speaks Cantonese. After recovering, Lin worked with local officials to get materials from Sepsis Alliance translated into Mandarin.
“I can’t imagine if it were my parents in the hospital,” he said, “going through what I was going through.”
Fran Ruhl's family received a startling letter from the Iowa Department of Human Services four weeks after she died in January 2022.
"Dear FAMILY OF FRANCES RUHL," the letter begins. "We have been informed of the death of the above person, and we wish to express our sincere condolences."
The letter gets right to the point: Iowa's Medicaid program had spent $226,611.35 for Ruhl's health care, and the government was entitled to recoup that money from her estate, including nearly any assets she owned or had a share in. If a spouse or disabled child survived Ruhl, the collection could be delayed until after their death, but the money would still be owed.
The notice said the family had 30 days to respond.
"I said, 'What is this letter for? What is this?'" says Ruhl's daughter, Jen Coghlan.
It seemed bogus, but it was real. Federal law requires all states to have "estate recovery programs," which seek reimbursements for spending under Medicaid, the joint federal and state health insurance program mainly for people with low incomes or disabilities. The recovery efforts collect more than $700 million a year, according to a 2021 report from the Medicaid and CHIP Payment and Access Commission, or MACPAC, an agency that advises Congress.
States have leeway to decide whom to bill and what type of assets to target. Some states collect very little. For example, Hawaii's Medicaid estate recovery program collected just $31,000 in 2019, according to the federal report.
Iowa, whose population is about twice Hawaii's, recovered more than $26 million that year, the report says.
Iowa uses a private contractor to recoup money spent on Medicaid coverage for any participant who was 55 or older or was a resident of a long-term care facility when they died. Even if an Iowan used few health services, the government can bill their estate for what Medicaid spent on premiums for coverage from private insurers known as managed-care organizations.
Supporters say the clawback efforts help ensure people with significant wealth don't take advantage of Medicaid, a program that spends more than $700 billion a year nationally.
Critics say families with resources, including lawyers, often find ways to shield their assets years ahead of time — leaving other families to bear the brunt of estate recoveries. For many, the family home is the most valuable asset, and heirs wind up selling it to settle the Medicaid bill.
For the Ruhl family, that would be an 832-square-foot, steel-sided house that Fran Ruhl and her husband, Henry, bought in 1964. It's in a modest neighborhood in Perry, a central Iowa town of 8,000 people. The county tax assessor estimates it's worth $81,470.
Henry Ruhl, 83, wanted to leave the house to Coghlan, but since his wife was a joint owner, the Medicaid recovery program could claim half the value after his death.
Fran Ruhl, a retired child care worker, was diagnosed with Lewy body dementia, a debilitating brain disorder. Instead of placing her in a nursing home, the family cared for her at home. A case manager from the Area Agency on Aging suggested in 2014 they look into the state's "Elderly Waiver" program to help pay expenses that weren't covered by Medicare and Tricare, the military insurance Henry Ruhl earned during his Iowa National Guard career.
Coghlan still has paperwork the family filled out. The form says the application was for people who wanted to get "Title 19 or Medicaid," but then listed "other programs within the Medical Assistance Program," including Elderly Waiver, which the form explains "helps keep people at home and not in a nursing home."
Coghlan says the family didn't realize the program was an offshoot of Medicaid, and the paperwork in her file did not clearly explain the government might seek reimbursement for properly paid benefits.
Some of the Medicaid money went to Coghlan for helping care for her mother. She paid income taxes on those wages, and she says she likely would have declined to accept the money if she'd known the government would try to scoop it back after her mother died.
"We do not like families or members being caught off guard," she said in an interview. "I have a lot of sympathy for those people."
Matney says her agency has considered changes to the estate recovery program, and she would not object if the federal government limited the practice. Iowa's Medicaid estate collections topped $30 million in fiscal year 2022, but that represented a sliver of Medicaid spending in Iowa, which is over $6 billion a year. And more than half the money recouped goes back to the federal government, she said.
Matney notes families can apply for "hardship exemptions" to reduce or delay recovery of money from estates. For example, she said, "if doing any type of estate recovery would deny a family of basic necessities, like food, clothing, shelter, or medical care, we think about that."
Frances Ruhl's chair now sits empty in the home of surviving husband Henry in Perry, Iowa.
KC McGinnis/For Kaiser Health News
Sumo Group, a private company that runs Iowa's estate recovery program, reported that 40 hardship requests were granted in fiscal 2022, and 15 were denied. The Des Moines company reported collecting money from 3,893 estates that year. Its director, Ben Chatman, declined to comment to KHN. Sumo Group is a subcontractor of a national company, Health Management Systems, which oversees Medicaid estate recoveries in several states. The national company declined to identify which states it serves or discuss its methods. Iowa pays the companies 11% of the proceeds from their estate recovery collections.
The 2021 federal advisory report urged Congress to bar states from collecting from families with meager assets, and to let states opt out of the effort altogether. "The program mainly recovers from estates of modest size, suggesting that individuals with greater means find ways to circumvent estate recovery and raising concerns about equity," the report says.
U.S. Rep. Jan Schakowsky introduced a bill in 2022 that would end the programs.
The Illinois Democrat says many families are caught unawares by Medicaid estate recovery notices. Their loved ones qualified for Medicaid participation, not realizing it would wind up costing their families later. "It's really a devastating outcome in many cases," she said.
Schakowsky noted some states have tried to avoid the practice. West Virginia sued the federal government in an attempt to overturn the requirement that it collect against Medicaid recipients' estates. That challenge failed.
Schakowsky's bill had no Republican co-sponsors and did not make it out of committee. But she hopes the proposal can move ahead, since every member of Congress has constituents who could be affected: "I think this is the beginning of a very worthy and doable fight."
States can limit their collection practices. For example, Massachusettsimplemented changes in 2021to exempt estates of $25,000 or less. That alone was expected to slash by half the number of targeted estates.
Massachusetts also made other changes, including allowing heirs to keep at least $50,000 of their inheritance if their incomes are less than 400% of the 2022 federal poverty level, or about $54,000 for a single person.
Prior to the changes, Massachusetts reported more than $83 million in Medicaid estate recoveries in 2019, more than any other state, according to the MACPAC report.
Supporters of estate recovery programs say they provide an important safeguard against misuse of Medicaid.
Mark Warshawsky, an economist for the conservative American Enterprise Institute, argues that other states should follow Iowa's lead in aggressively recouping money from estates.
Warshawsky says many other states exclude assets that should be fair game for recovery, including tax-exempt retirement accounts, such as 401(k)s. Those accounts make up the bulk of many seniors' assets, he said, and people should tap the balances to pay for health care before leaning on Medicaid.
Warshawsky says Medicaid is intended as a safety net for Americans who have little money. "It's the absolute essence of the program," he says. "Medicaid is welfare."
People should not be able to shelter their wealth to qualify, he says. Instead, they should be encouraged to save for the possibility they'll need long-term care, or to buy insurance to help cover the costs. Such insurance can be expensive and contain caveats that leave consumers unprotected, so most people decline to buy it. Warshawsky says that's probably because people figure Medicaid will bail them out if need be.
Eric Einhart, a New York lawyer and board member of the National Academy of Elder Law Attorneys, says Medicaid is the only major government program that seeks reimbursement from estates for properly paid benefits.
Medicare, the giant federal health program for seniors, covers virtually everyone 65 or older, no matter how much money they have. It does not seek repayments from estates.
"There's a discrimination against what I call 'the wrong type of disease,'" Einhart says. Medicare could spend hundreds of thousands of dollars on hospital treatment for a person with serious heart problems or cancer, and no government representatives would try to recoup the money from the person's estate. But people with other conditions, such as dementia, often need extended nursing home care, which Medicare won't cover. Many such patients wind up on Medicaid, and their estates are billed.
On a recent afternoon, Henry Ruhl and his daughter sat at his kitchen table in Iowa, going over the paperwork and wondering how it would all turn out.
The family found some comfort in learning that the bill for Fran Ruhl's Medicaid expenses will be deferred as long as her husband is alive. He won't be kicked out of his house. And he knows his wife's half of their assets won't add up to anything near the $226,611.35 the government says it spent on her care.
"You can't get — how do you say it?" he asks.
"Blood from a turnip," his daughter replies.
"That's right," he says with a chuckle. "Blood from a turnip."
