For today, there are no doctor’s visits. No long afternoons with nothing to do. No struggles over bathing.

At the National Gallery of Art in Washington, D.C., a group of older adults — some in wheelchairs, some with Alzheimer’s — sit with their caregivers in a semicircle around a haunting portrait of a woman in white.

“Take a deep breath,” says Lorena Bradford, head of accessible programs at the National Gallery. She’s standing before “The Repentant Magdalen” by Georges de La Tour.

“Now, let your eyes wander all over the painting,” Bradford says. “Take it all in. What do you think is going on?”

“I think she looks sad,” says Marie Fanning, of Alexandria, Va., who has Alzheimer’s.

“Yes. Yes, she looks sad,” Bradford agrees.

“This is such a gift,” Bill Fanning, Marie’s 77-year-old husband and caregiver, says of the outing.

Across the country, community groups, hospitals, government agencies and nonprofits are starting to do more to support at least some of the estimated 42 million friends and family members who are the primary caregivers of adults and children who have disabilities, are recovering from surgeries and illnesses or are coping with Alzheimer’s and other chronic diseases.

The National Gallery’s program is part of the trend focusing on the health, well-being and education of these caregivers, who are usually unpaid.

“We know that involvement with art improves well-being,” says Carolyn Halpin-Healy, executive director of the Arts & Minds program for caregivers and patients at the Metropolitan Museum of Art in New York.

“In our own research for persons with dementia, we see a reduction in apathy,” Halpin-Healy says. “For caregivers, we see less isolation and a reduction in stress.”

She co-founded the program with a Columbia University neurologist, Dr. James Noble, in 2010 at the Harlem Studio Museum in New York. The Just Us program in Washington is a spinoff of that program. Other museums in New York and Dubuque, Iowa, have similar programs.

A bipartisan law signed by President Donald Trump in January calls for a national strategy to address the needs of caregivers, who are primarily women and provide 37 billion hours in unpaid care to relatives or close friends.

All those hours are valued at $470 billion, according to an AARP study. The law will require the Department of Health and Human Services to set up an advisory council and develop a blueprint for government action on financial and workplace issues, respite care and other caregiver issues.

At the same time, 42 states and the District of Columbia have passed their own laws requiring hospitals and other nursing facilities to provide training for caregivers who perform medical tasks, and to record them as the “caregiver” when patients are admitted or released from hospitals or nursing facilities.

The laws’ required designation benefits patients and their families, proponents say.In states without such a law Alabama, Florida, Georgia, Idaho, South Carolina, South Dakota, Vermont and Wisconsin (Kansas’ law takes effect in July) — patients can be dismissed from the hospital without family members being told or briefed fully on what care the patient needs.

The CARE Act is “more than just a law,” says Elaine Ryan, AARP vice president of state advocacy and strategy. “It’s a change in the practice of health care.”

Helping the helpers

Family caregivers are almost two times more likely to have emotional and physical problems than other U.S. adults, and three times more likely to have productivity problems at work, according to a 2015 study.The more intense the care, the greater the effects, the researchers found.

Dr. Eric Coleman, a gerontologist and recipient of a MacArthur Foundation fellowship in 2012, created the Care Transitions Intervention model. The national program, based at the University of Colorado in Denver, trains coaches to help caregivers ease the transition of a patient to home care. The coaches are usually social workers, nurses or others hired by hospitals and other facilities to work directly with caregivers.

Coaches talk to the caregiver before patients are discharged from a hospital. Then they have a one-hour coaching session at the patient’s home, and three follow-up phone calls. Studies have shown that having transition coaches can drop readmission to hospitals by 20 to 50 percent, says Coleman.

Even if a caregiver is with the patient when doctors give instructions in the hospital or clinic, the medical jargon can go right over their heads, Coleman says. “We tell people that for the next 24 to 48 hours, here are key things you need to do. Then we follow up at home,” he says.

Caregivers do more than make meals; they also perform medical tasks, like giving medicine, taking blood pressure, changing bandages and more. Yet they receive virtually no training, Coleman says.

“I’m a physician, and when I take care of my mom, I have an endless loop in my head,” of the to-do list, he says.

A 2015 study by AARPfound that 46 percent of family caregivers perform medical/nursing tasks, 78 percent of family caregivers manage medications, and 53 percent of family caregivers serve as care coordinators. The majority told researchers they’d received no training in those tasks.

Caregivers are “the backbone of our health system,” says Alan Stevens, a gerontologist and psychologist who trains caregivers, in partnership with Baylor Scott White, the largest nonprofit hospital company in Texas, and a group of agencies that deal with elderly issues across the state.

“If caregivers go away, we have a problem,” Stevens says. “It’s important to better understand their needs — and to help them.”

Linking hospitals with caregivers

Dignity Health Systems, a large nonprofit hospital company in California, is partnering with the nonprofit Santa Barbara Foundation to provide caregiver coaches. At any given time, 1,000 caregivers are being coached, says Kathleen Sullivan, vice president of acute care services for Dignity.

Caregivers are now officially identified as a partner Dignity’s health team, Sullivan says. “They’re given a badge, they have a tote bag with information, and the hospital knows who to contact.”

Her group works with nonprofit aging agencies to provide in-home coaches, she says. “When people get home from the hospital, they’re just exhausted. They don’t remember what they were told in the hospital.”

In Virginia, the Bay Area Council on Aging and a consortium of four other groups and five hospitals are training caregiver coaches using the CTI program. The key to successful coaching of caregivers is to take training into the home, says Kathy Vesley, of the Bay Area Council on Aging in Fredericksburg, Va.

“Some of these folks are very ill, and they’re managing 12-plus medications,” Vesley says. “You get into the home and they say, ‘Here’s my shopping bag of medicines.’ And it’s literally a shopping bag.”

The consortium has seen 26,000 patients and caregivers over the past 2½ years. In that time, rates of readmission to the hospital have fallen from 23.4 percent to 9 percent, she says.

Coaches help with food, medicine and video training for how to do medical procedures, and help solve issues like how to get patients to appointments with doctors.

Out in rural southeastern Virginia, transportation takes a whole new meaning when your driveway is half a mile long,” Vesley says.

Having fun helps, too

Caregivers also need a little fun and relaxation, says Jason Resendez, executive director of the Latinos Against Alzheimer’s Coalition. About 8 million Latinos are caregivers for their family members, Resendez says, and nearly 2 million are caring for family members with Alzheimer’s.

To bring some of those caregivers together for fun, Latino groups in Los Angeles recently partnered in producing a comedic play, performed in Spanish, about a son who is taking care of his mother. Meanwhile, in Chicago, the Latino Alzheimer’s and Memory Disorders Alliance holds caregiver trainings and free dance classes — where caregivers can learn to dance salsa.

“It’s not just about translation,” Resendez says. “It’s not just about handing out pamphlets.”

Kaiser Health News is a nonprofit news service, and editorially independent program of the Kaiser Family Foundation. It’s not affiliated with Kaiser Permanente.

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Updated at 9:05 a.m. ET

Rear Adm. Ronny Jackson, President Trump’s embattled nominee to lead the Department of Veterans Affairs, has withdrawn from consideration for the post amid allegations he had fostered a hostile work environment and behaved improperly while serving as the top doctor leading the White House medical unit.

In a statement Thursday morning, Jackson said, “Going into this process, I expected tough questions about how to best care for our veterans, but I did not expect to have to dignify baseless and anonymous attacks on my character and integrity.”

He continued, “While I will forever be grateful for the trust and confidence President Trump has placed in me by giving me this opportunity, I am regretfully withdrawing my nomination to be Secretary for the Department of Veterans Affairs.”

On Wednesday, Sen. Jon Tester, D-Mont., the ranking member of the Senate Veterans’ Affairs Committee released a two-page statement detailing allegations against Jackson from 23 unnamed individuals.

The allegations included providing “a large supply” of the opioid Percocet to a member of the White House Military Office and wrecking a government car while driving drunk after a Secret Service going-away party. Jackson denied wrecking a vehicle to reporters.

In an interview with Fox & Friends on Thursday after Jackson’s withdrawal, Trump said Jackson “would have done a great job” and “had a perfect record” and called the allegations against him false.

The Senate Veterans’ Affairs Committee had postponed Jackson’s confirmation hearing, originally slated for Wednesday, after accusations of misconduct surfaced against Jackson, who has served as the personal physician for the president under the Trump and Obama administrations.

In an interview Tuesday with NPR’s All Things Considered,Tester said committee staffers “were told stories where he was repeatedly drunk while on duty where his main job was to take care of the most powerful man in the world. That’s not acceptable,” Tester said, noting the various allegations date back to when Jackson oversaw President Barack Obama’s health care.

“Some of the exact words that were used by the folks we talked to were ‘abusive toward staff,’ ‘very explosive personality,’ ‘belittles the folks underneath him,’ staff that he oversaw. ‘Screamed toward staff,’ ” Tester said. “Basically creating an environment where the staff felt that they needed to walk on eggshells when they were around him.”

In the Fox interview, Trump blamed Tester for Jackson’s withdrawal and said Tester “has to have a big price to pay in Montana.” Tester is up for re-election in November, in a state Trump won handily in 2016.

Trump says he has someone in mind to replace Jackson, saying it’s “somebody with political capability.”

Veterans’ Affairs Committee Chairman Johnny Isakson, R-Ga., and Tester had sent a letter to Trump on Tuesday requesting additional documentation related to Jackson’s tenure as the president’s doctor and his role leading the White House medical team.

The letter requested information about rumored Pentagon inspector general reports said to detail allegations into Jackson’s conduct.

However, Jackson said there was no inspector general report about the allegations. “No, there was not,” he said before brushing off questions about whether he would withdraw.

The White House put out a statement to make it clear that Jackson was reporting to work on Thursday in his normal post at the White House Medical Unit. But the questions about his conduct in that position may not necessarily go away just because he has withdrawn his name for the Cabinet post.

Jackson’s initial nomination came as a surprise to many when the president announced his pick last month to lead the VA after the departure of Veterans Affairs Secretary David Shulkin, who had been confirmed with unanimous bipartisan support in the Senate.

While previous presidents had praised Jackson’s medical care, questions arose almost immediately about whether he had the managerial experience to oversee a massive health care operation of more than 370,000 employees that serves more than 9 million veterans and has a budget of nearly $200 billion.

“Adm. Jackson is highly trained and qualified and as a service member himself, he has seen firsthand the tremendous sacrifice our veterans make and has a deep appreciation for the debt our great country owes them,” Trump said in announcing his nomination.

But after the allegations against Jackson began to be reported by national media outlets this week, Trump said he wouldn’t be surprised if Jackson wanted to withdraw given the rising storm, but that it was “his decision.”

“I wouldn’t do it. I wouldn’t do it. What does he need it for? To be abused by a bunch of politicians that aren’t thinking nicely about our country? I really don’t think personally he should do it, but it’s totally his — I would stand behind him — totally his decision,” Trump remarked Tuesday during a news conference alongside French President Emmanuel Macron.

Ultimately, as he often does, Trump appeared to go with his gut in picking Jackson and it’s unclear how much — if any — vetting the White House did before making the selection. Trump had become personally fond of Jackson, especially after he gave the president a glowing review after his first presidential physical earlier this year, even boasting that the 71-year-old president had such “great genes” that “if he had a healthier diet over the last 20 years, he might live to be 200.”

Jackson joined the White House medical unit in 2006, helping care for President George W. Bush, and was formally named physician to the president in 2013 by Obama. A West Texas native, he attended Texas A&M University and the University of Texas Medical Branch, specializing in emergency medicine.

There were also questions about Jackson’s position on privatizing the VA — something many of Trump’s most conservative backers have pushed for. Shulkin said he believed that was one reason he was ousted from his post, though there were also questions raised about improper travel expenses during his tenure.

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This story was co-published with ProPublica.

Doctors would see new mothers sooner and more frequently, and insurers would cover the increased visits, under sweeping new recommendations from the organization that sets standards of care for obstetrician-gynecologists in the U.S.

The 11-page “committee opinion” on “Optimizing Postpartum Care,” released today by the American College of Obstetricians and Gynecologists (ACOG), represents a fundamental re-imagining of how providers, insurers and patients can work together to improve care for women after giving birth.

“To optimize the health of women and infants, postpartum care should become an ongoing process, rather than a single encounter, with services and support tailored to each woman’s individual needs,” the committee opinion states.

While an ACOG task force began rethinking its approach several years ago, the guidelines arrive at a moment of mounting concern about rising rates of pregnancy-related deaths and near-deaths in the U.S. As ProPublica and NPR have reported, more than 700 women die every year in this country from causes related to pregnancy and childbirth and more than 50,000 suffer life-threatening complications, among the worst records for maternal health in the industrialized world. The death rate for black mothers is three to four times that of white women.

The days and weeks after childbirth can be a time of particular vulnerability for new moms, with physical and emotional risks that include pain and infection, hypertension and stroke, heart problems, blood clots, anxiety and depression. More than half of maternal deaths occur after the baby is born, according to a new CDC Foundation report.

Yet for many women in the U.S., the ACOG committee opinion notes, the postpartum period is “devoid of formal or infor­mal maternal support.” This reflects a troubling tendency in the medical system — and throughout American society — to focus on the health and safety of the fetus or baby more than that of the mother. “The baby is the candy, the mom is the wrapper,” said Alison Stuebe, who teaches in the department of obstetrics and gynecology at the University of North Carolina School of Medicine and heads the task force that drafted the guidelines. “And once the candy is out of the wrapper, the wrapper is cast aside.”

The way that providers currently care for pregnant women and infants versus new mothers exemplifies this difference. During the prenatal period, a woman may see her ob-gyn a dozen or more times, including at least two checkups during her ninth month. Her baby’s first pediatric visit usually occurs a few days after birth. But the mother may not have a follow-up appointment with her own doctor until four to six weeks after delivery — and in many cases, insurance only covers one visit. “As soon as that baby comes out, [the mom] is kind of an afterthought,” said Tamika Auguste, associate medical director of the MedStar Health Simulation Training & Education Lab in Washington, D.C., and a coauthor of the ACOG opinion.

For working mothers, having to wait four to six weeks makes it harder to arrange a check-up.

Some 23 percent of mothers employed outside the home are back on the job within 10 days of giving birth, a 2014 report for the U.S. Department of Labor found; another 22 percent return to work within 40 days. Lack of childcare and transportation can also present significant hurdles to accessing care. According to ACOG, as many as 40 percent of women skip their postpartum visit; for low-income women of color, the rates are even higher.

“You may have a woman that has asthma, is having problems lactating, and is obese, and when they come to see you at six weeks, we have missed the boat here,” Auguste said.

Nor is a single visit enough time to address a new mother’s questions and concerns, especially if she had a complicated pregnancy or is suffering from chronic conditions such as hypertension, diabetes or a mood disorder. “We’re trying to address all of the issues that women are dealing with after having a baby in one 20-minute encounter,” Stuebe said. “And that’s really hard to do.”

Under the new ACOG guidelines, women would see their providers much earlier — from within three days postpartum if they have suffered from severe hypertension to no later than three weeks if their pregnancies and deliveries were normal— and would return as often as needed. Depending on a woman’s symptoms and history, the final postpartum visit could take place as late as 12 weeks after delivery and ideally would include “a full assessment of physical, social, and psychological well-being,” from pain to weight loss to sexuality to management of chronic diseases, ACOG says.

In another significant change, ACOG is urging providers to emphasize in conversations with patients the long-term health risks associated with pregnancy complications such as preterm delivery, preeclampsia and gestational diabetes. “These risk factors are emerging as an important predictor of future [cardiovascular disease],” the recommendations state. “…[B]ut because these conditions often resolve postpartum, the increased cardiovascular disease risk is not consistently communicated to women.”

Earlier, more frequent and more individualized care could be a step toward addressing the stark racial disparities in maternal and infant health, said ACOG’s outgoing president, Haywood Brown, who has made reforming postpartum care one of the main initiatives of his term. Black mothers are at higher risk for many childbirth complications, including preeclampsia, heart failure and blood clots, and they’re more likely to suffer long-lasting health consequences. They also have higher rates of postpartum depression but are less likely to receive treatment. Regardless of race, for women whose pregnancies are covered by Medicaid, the postpartum period may be their best opportunity to get help with chronic conditions before they lose insurance coverage.

The new guidelines urge doctors to take a proactive approach, helping patients develop a postpartum care plan while still pregnant, including a team of family and friends to provide social and other support. According to ACOG, one in four new mothers surveyed recently said they didn’t even have a phone number of a health care provider to contact with concerns about themselves or their babies.

ACOG isn’t the only organization calling for a reinvention of postpartum care; patient-safety groups, researchers, nurses and midwives have also tackled the issue, recasting the three months after birth as akin to a “fourth trimester.”

“The postpartum period has become a priority,” said Debra Bingham, a professor of nursing at the University of Maryland and executive director of the Institute for Perinatal Quality Improvement who has participated in many of these initiatives.

Some providers, including Brown, who is affiliated with Duke University, are already incorporating some of ACOG’s ideas. Still, putting the reforms into common practice may take years. One of the biggest impediments is insurance reimbursement. Currently, payment for prenatal care, delivery and a single post-birth visit is bundled together into one global fee, creating a disincentive for doctors to see patients more than once, Auguste said.

The disincentives are greater for women on Medicaid, which pays for about half of U.S. births. What’s more, in many states Medicaid coverage ends at two months postpartum. The ACOG opinion didn’t estimate the cost of implementing its recommendations.

Brown agreed that revamping how postpartum care is reimbursed is critical, and insurance representatives — along with members of other medical specialties — were on the ACOG task force that drafted the new guidelines. “I want to make sure that I get some employee health plans and some health systems to adopt this nationally,” Brown said.

Although the guidelines are aimed at ob-gyns, they would require changes throughout the maternal care system. That’s what ACOG is hoping for. “It’s really a societal call to action,” Stuebe said.

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A disability rights group in Texas sent out a survey last month, trying to figure out how many of its members became disabled by gun violence. The group, ADAPT of Texas, says it’s an effort to collect data that will help inform Texas lawmakers about how they should legislate guns.

Bob Kafka, an organizer with ADAPT, says when gun violence occurs, particularly mass shootings, the public tends to have a pretty limited discussion about what happens to the victims.

Susan Nelson was one of those victims. About 25 years ago, she was having dinner at a friend’s house. Her friend had a gun.

“It was registered and everything,” she says of her friend’s firearm.

There was also a young man there that night. He’d been thrown out of his parents’ house and was unstable. He found the gun and confronted both Nelson and her friend, saying he was going to rob and then kill them. Nelson says he first shot her in her left shoulder.

“I stood up to turn to run and was shot in the back of the head,” she says. “My friend was as well and that’s the last part I remember from the shooting. My friend died in flight to the hospital and I woke from a coma two weeks later.”

She was 29-years-old and had to start her life all over.

“I was paralyzed,” she says. “I could barely read and write. My vision was really bad so I had to spend the next seven months in therapy relearning everything and working really, really hard.”

Her hard work paid off. Nelson can walk now and she’s a writer. Her vision is good but she still lives with various disabilities.

“It takes me longer to formulate my sentences because my brain doesn’t work as fast to make the words come out of my mouth as fast as I’d like,” she says.

This experience hasn’t changed Nelson’s relationship with guns very much, though. Nelson grew up in southeast Texas surrounded by guns. She says she still thinks people who are responsible should be able to have them.

“I am not against guns. And I don’t know that everyone who gets shot is going to turn them against guns,” she says.

This way of thinking is something Kafka says he’s expecting to better understand as the ADAPT survey results come in. He wants the information to help educate lawmakers and bolster the group’s authority to testify on behalf of its members about gun legislation. Kafka says victims of gun violence all face different hurdles in recovery and he wants to know about those experiences. But he’s not expecting everyone surveyed to hold the same views.

“We have people on both sides of the issue,” he says. “There are probably NRA members in the disability community.”

Kafka says we should hear from people who were disabled by gun violence because we rarely do.

“Not only do we not talk about it, it’s invisible,” he says. “The media loves to focus on how many people died and then they have the sort of other injured, but I’ve never seen where they follow the rehab of somebody.”

Mass shootings also tend to garner a lot of media attention, says Noam Ostrander with the School of Social Work at DePaul University in Chicago. But there are many people who become disabled because of day-to-day gun violence in major cities who never get called by a reporter. For many years, Ostrander worked with gang members in the west side of Chicago who became paralyzed after being shot.

“The cost of that injury and that often then becomes a public cost is astronomical and I think that would be shocking to a lot of folks,” he says.

It’s also easy to forget, Ostrander says, that about three to five times the number of people who die from gun violence actually survive. And Kafka wants to make sure that their voices count in the debate.

This story is part of a reporting partnership with NPR, KUT andKaiser Health News. You can follow Ashley Lopez on Twitter: @AshLopezRadio.

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A few months ago, I wrote a check for $12,000 but couldn’t figure out exactly why.

The payment was to secure a place for my mother at Sligo Creek Center, in Takoma Park, Md. It’s a nursing home and rehab center owned by Genesis Healthcare.

My mother was about to be discharged from Holy Cross Hospital, in nearby Silver Spring, after a fall. Medicare wouldn’t pay for her rehabilitation care.

So before the Sligo Creek Center would let her through the door, I had to pre-pay for a month — $12,000 — or nearly $400 a night.

Now my mother had paid in to Medicare her entire working life, and since she retired, the Social Security Administration has automatically deducted $130 for her basic Medicare premium from her $1,650 monthly check. On top of that, she pays about $300 a month for a prescription drug plan and supplemental “Medigap” insurance.

But because of dueling rules and laws that have been well-known to Medicare officials and members of Congress for years, none of that covered my elderly mother when she needed care.

This is a story of how money, outdated laws and federal budget rules can interfere with patient care and leave elderly patients vulnerable.

The Fall

I found my mother lying on the floor of her apartment one evening in early January. I had stopped by because she didn’t return my calls. It was Wednesday, and she had fallen sometime in the last 24 hours.

She was awake, but confused. Her lips were chapped, her skin was too pink, and her thick white curls were a mess on her head. I needed help getting her up and into bed. When my husband and I couldn’t do it, we called the local fire department.

There were no obvious injuries and she was speaking coherently, so I spent the night with her and tried to care for her the next day, thinking she just needed rest and food. But it soon became clear she needed medical help.

She couldn’t walk, couldn’t even move her left leg. Her confusion was getting worse. Her doctor recommended I take her to the emergency room at Holy Cross Hospital in Silver Spring.

An ER doctor there examined her, saw that she couldn’t move her leg, couldn’t really even hold her body upright and had trouble with her memory. He said he would admit her to the hospital’s observation unit to figure out what was going on. He mentioned she might need rehab care to get up and walking again.

The word observation triggered an alarm deep in my brain. I had read that patients on observation status sometimes weren’t eligible for rehab care, and I told the doctor that I was concerned.

He said he and the hospital “do all they can to be sure their patients’ care is covered.” I was reassured.

My mother spent four nights at Holy Cross. She was on IV antibiotics for an infection. She got nine X-rays, two MRIs, scans of her carotid arteries and lungs and a CT scan. They drew blood no less than six times because they were concerned she might have had a mild heart attack or stroke that had caused her to fall.

Administrative Maze

On the day they decided to release her, a social worker named Jay called to say the doctors were recommending she go to an inpatient rehab center. And then he said Medicare wouldn’t pay for it.

My mother was caught in an administrative wonderland where she slept at a hospital for four nights but the paperwork claimed she was an inpatient only one of those nights. Medicare’s rules, dating back to the 1960s, require people to spend three nights in a hospital before the federal program will pay for inpatient rehabilitative care.

It would cost upward of $12,000 a month, Jay told me.

I sped to the hospital in a rage. I demanded to know why they were releasing her when she still couldn’t walk. Further, I wanted to know, why were they calling her an “outpatient” when she was sleeping in their bed, under their blankets, wearing their hospital gown and being cared for by their staff.

Here were some of the things a parade of social workers and nurses told me that day.

• The doctor couldn’t admit her as an inpatient because she didn’t have a qualifying diagnosis.
• Her status was changed from observation to inpatient on the third day because Medicare requires that.
• They could not change her status to inpatient for the entire stay because they didn’t want to be audited.
• She couldn’t go to acute rehabilitation, which Medicare pays for, because there was no evidence she’d had a stroke or heart attack.

They didn’t say much about her medical care. It was all about the rules.

For the record, my mother has no money. She lives on Social Security. She has no car, no house, no savings. My siblings and I help pay her bills.

And now they were saying she had to leave the hospital. But she obviously couldn’t go home.

Holy Cross kept her one more night — at no charge — while we figured out where she could go. They said she could apply for Medicaid, and a social worker handed me a 17-page application. I picked a handful of rehab centers from a list, after a quick search of reviews on my iPhone. One was full, one rejected her because she was listed as “Medicaid pending,” and finally Genesis Healthcare said they’d take her — on condition I come by with a $12,000 check that day.

So I did.

Rules, Rules, Rules

So now I was out $12,000 — borrowed from a home equity line of credit — and I wanted to know why.

And here’s what I learned.

Medicare, in its zillions of pages of guidelines and regulations, has two competing rules. The first says patients must spend three nights as a hospital inpatient to qualify for inpatient rehabilitation or skilled nursing care once they’re discharged. The second encourages hospitals to keep patients on observation status or risk being audited.

The reason? Medicare pays more for short inpatient stays than short outpatient stays. But once a patient has been at the hospital for a number of days, that calculus flips, and outpatients end up costing more. So in its effort to control costs, Medicare forces hospitals to justify their decisions about inpatient and outpatient status.

“It was always kind of assumed that when you go to the hospital, people know what hospital care is,” says Judy Stein, executive director of the nonprofit Center for Medicare Advocacy. “Hospital admission is when you’re admitted to the hospital.”

Her group is leading a class-action lawsuit against the Department of Health and Human Services, seeking to give patients the right to appeal their status as observation patients.

Stein says the use of observation status has grown dramatically in the past decade, in part because Medicare has become far more aggressive in going after hospitals they claimed were inappropriately — and expensively — admitting patients who didn’t need hospital care.

A study in the journal Health Affairs found that the number of Medicare patients who spent three or more days in a hospital under observation rose 88 percent from 2007 to 2009. That increase came just after Congress authorized Medicare to use contractors to audit hospitals for overcharges. But the trend in observation care has continued.

A report by the HHS inspector general found that in fiscal year 2014, more than 633,000 Medicare beneficiaries spent three or more days in the hospital but were considered outpatients, an increase of 8 percent over the previous year. A separate report found that in 2012 about 24,000 patients went to skilled nursing homes or rehab centers and had to pay their own way.

New Unit

Holy Cross built a dedicated observation unit around 2011, according to Dr. Yancy Phillips, the hospital’s chief quality officer, who spoke to me at length about the use of observation status.

It’s where my mother spent those four nights. She had her own room, with glass doors that were covered by a curtain. The nurses’ station was right outside her door. It looks like a cross between a traditional patient floor and the emergency room. Doctors came around at least once a day.

Phillips says that Holy Cross has no financial motive to classify patients like my mother one way or another because Maryland law requires the same payment for the same services. It’s the only state with such rules.

But the hospital still has to follow Medicare’s rules when it comes to inpatient and observation care.

“There’s really no financial advantage to us except if we get the status wrong,” he said. “Medicare has come back to us and said, ‘No, no, no, this should not have been an inpatient.'”

When that happens, Medicare pays nothing at all.

To avoid losing money, Holy Cross, like many other hospitals, uses “decision support” software — in this case a package called InterQual, sold by McKesson — that guides doctors or case managers in making the call on whether a person should be admitted or kept on “observation.”

The programs are designed to ensure that hospitals don’t get dinged by Medicare for overcharging or providing inappropriate services.

Phillips says doctors use their own judgment about whether a patient should be admitted. But he also acknowledges that InterQual is embedded in the electronic health record software used at Holy Cross. It was likely this program that concluded that my mother didn’t meet Medicare’s criteria for inpatient care.

The thing about all this is that this problem is well known to everybody involved.

But lawmakers and Medicare haven’t taken action to fix it.

A bipartisan group of lawmakers, led by Sen. Sherrod Brown, D-Ohio, and Rep. Joe Courtney, D-Conn., have proposed bills multiple times that would simply require Medicare to count all the time patients spend in a hospital toward their requirements for nursing care.

The House version attracted 162 co-sponsors from both parties, but neither bill has gotten a hearing on Capitol Hill or been close to a vote.

Jonathan Blum, the former Medicare director at CMS, suggests another fix — get rid of the three-night requirement altogether.

“It’s really an artifact,” he said. “It was put in place as a budgetary control and it was designed when the average length of a hospital stay was seven, eight or nine days.”

Everyone I talked with agrees that the root of the problem is money. There’s been no formal analysis from the Congressional Budget Office, but most people believe that eliminating the three-night requirement would end up costing the government more money.

“These are insurance rules. They’re policies. They can be changed,” says Phillips of Holy Cross Hospital. “But it would have enormous financial implications for the country. And we may have an appetite for tax cuts, but I don’t see that we have an appetite for something that would increase Medicare costs.”

It’s not clear that it would cost more, however. Two pilot programs from the late 1970s showed mixed results from eliminating the three-night rule, with Medicare costs rising in Massachusetts, but falling in Oregon, according to an article in JAMA, the Journal of the American Medical Association.

That article concluded however, that the rule may be preventing patients from getting appropriate care.

And that would have been the case with my mother, who couldn’t have written a $12,000 check to secure a rehab bed for herself.

Two weeks into her therapy at the Sligo Center, my mother fell again. This time, she broke her hip and needed hip replacement surgery. Because she didn’t stay the whole month getting rehab care, I got a refund of about $6,000.

Under Medicare’s rules, that surgery meant she was automatically eligible for post-surgical rehab care. So after she was released from the hospital, she went to a new center — no deposit required.

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Most people are familiar with some form of triage: When you go to an emergency room, you first sit down with a triage nurse who records your symptoms, takes your vital signs and assesses the urgency of your medical need.

As of Thursday, that’s happening over the phone for 911 callers in Washington, D.C., where triage nurses now sit alongside 911 dispatchers to help field calls.

Why are they there? D.C. has the highest rate of 911 calls in the U.S., and one in four of those calls is not an actual emergency — instead, it’s a twisted ankle, or a cough or a rash. The new triage program aims to improve those numbers by diverting needs that aren’t urgent to medical care that doesn’t involve an ambulance or an emergency room.

During a practice session, trainee Ogechi Ukachu, a registered nurse who has previously worked in an ER, clicks through a series of questions.

“Are you having any difficulty breathing or catching your breath?” she asks the the training exercise’s pretend caller, who has complained of a sore throat. “Do you hear any weird sounds when you’re breathing — like whistling?” No, and no, the caller tells her.

It’s not an emergency, Ukachu determines, so instead of having the dispatcher send an ambulance, Ukachu gets to work finding the caller an appointment with a primary care provider who can see the patient that day.

On her computer, based on the information the caller has provided, Ukachu can see whether the patient already has a relationship with a doctor or clinic, or, if not, which community health clinic is closest. She can also see nearby clinics’ schedules for the day, so can make the patient an appointment.

The triage nurses can even coordinate free Lyft rides for people who are on Medicaid — including a stop at a pharmacy if needed.

The “ride” part of the new triage service is critical, proponents say, because that’s the real emergency for many of the inappropriate calls to 911. Some callers simply have a hard time getting to the doctor in parts of the District where clinics can be miles away, and public transportation may not be readily accessible.

It has taken two years to pull off this plan. City health agencies, 22 primary care clinics, contractors and unions were all involved, under the coordination of the D.C. Fire and EMS Department.

“We’re very excited,” says Dr. Robert Holman, the department’s medical director, “and of course we all have butterflies in our stomach.”

Holman says he hit upon the idea soon after taking his job two years ago. He was looking at the city’s emergency call data and noticed that more than a hundred calls every day were for basic medical issues.

“I simply asked a question,” he says: ” ‘Wouldn’t this be simply better evaluated using a triage nurse?’ “

Other cities across the U.S., such as Louisville, Reno and the Dallas-Fort Worth area have tried similar initiatives, Holman says. But D.C.’s program is distinct in its broad reach, and in the way it’s embedded within the 911 dispatch system.

The hope is that the triage line will save the city and insurers money — ambulances and ERs are the most expensive way to deliver care. Wait times for ambulances should go down, as should ER overcrowding.

And the patients will benefit, too, Holman believes. One example might be someone like a patient he encountered in his previous job at a walk-in health clinic; she’d come to the clinic looking for antibiotics for an infection.

“She mentioned that she’d had a bladder infection quite recently that was treated easily in an emergency department nearby,” he recalls.

Instead of just giving her the antibiotics, Holman also checked the patient’s vital signs and talked to her. Her blood glucose levels were really high. She was depressed, and had stopped taking her diabetes medication, she told him.

“We could actually offer her treatment for her behavioral health problem as well as treatment of her diabetes,” he says, “in addition to [treating] her bladder infection.”

This is part of Holman’s message to city residents: Helping callers get a primary care visit, if they need one, is a service the triage nurse can provide.

“The mapping of our low-acuity callers exactly maps to where our community health centers are in Washington,” he says.

However, D.C. has a somewhat rocky history when it comes to its emergency services. In a few high-profile cases in the past, patients have died while waiting for emergency care. Some 911 callers who are advised their case isn’t an emergency may feel they’re being denied something crucial.

To address these fears in advance, Holman and his colleagues have crisscrossed the District, going to community meetings and neighborhood associations talking to residents.

Lois Wiley, a longtime resident of the LeDroit Park neighborhood, is skeptical of the triage plan, and lets Holman know that at a public meeting.

“Suppose,” she says, “I say I don’t want to talk to the nurse, I want to go to the hospital?”

Holman tells her the city’s response will be based on the severity of the problem. “If you call with a sore throat,” he says, “we are not taking you to the emergency department.”

“Oh, yes you are,” Wiley says under her breath.

In the face of that sort of skepticism, Washington officials are prepared to carefully monitor how well the pilot project is working.

According to the city’s plan, every caller who gets sent to a clinic instead of the ER will be surveyed the next day about their experience. And data analysts will be checking ambulance response time, ER use, primary care use and 911 call volume.

Other cities grappling with the same difficult issues will be closely watching, too.

This story is part of NPR’s reporting partnership with local member stations and Kaiser Health News.

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States are continuing to do battle with budget-busting prices of prescription drugs. But a recent federal court decision could limit the tools available to them — underscoring the challenge states face as, in the absence of federal action, they attempt on their own to take on the powerful drug industry.

The 2-to-1 ruling Friday by the U.S. Fourth Circuit Court of Appeals invalidated a Maryland law meant to limit “price-gouging” by generic drug manufacturers, inspired by cases such as that of former Turing Pharmaceutical CEO Martin Shkreli, who raised one generic drug’s price 5,000 percent after buying the company.

The law, which had been hailed as a model for other states, is one of a number of state initiatives designed to combat rapidly rising drug prices. It gave the state attorney general power to intervene if a generic or off-patent drug’s price increased by 50 percent or more in a single year.

If dissatisfied with the company’s justification, the attorney general could file suit in state court. Manufacturers could face a fine of $10,000 and potentially have to reverse the price hike. The generics industry was fiercely critical of the law.

“We are evaluating all options with regard to next steps,” Maryland Attorney General Brian Frosh said, in a written statement. His office would not elaborate further.

The state could appeal to have the case heard “en banc,” meaning by the full Fourth Circuit, as opposed to just the three judges.

Such appeals aren’t commonly granted, but this law could be a strong candidate, suggests Dr. Aaron Kesselheim, an associate professor at Harvard Medical School who researches drug-price regulation.

The Friday ruling looms large as other state legislatures grapple with ever-climbing drug prices.

Similar price-gouging legislation has been introduced in at least 13 states this year, though none of those measures became law, according to the National Conference of State Legislatures. Three other bills failed to gain passage.

The NCSL also cited the law in a March advisory for states seeking new approaches to regulating drug prices.

The appeals court’s finding could have a chilling effect on such efforts, especially as more state legislatures wrap up business for 2018.

“A negative court ruling will put a damper or a pause on state activities,” says Richard Cauchi, NCSL’s health program director. “Unless this topic is your number one priority of the year, your legislators are juggling multiple bills, multiple strategies. When bill three gets in trouble, they move to bill four.”

The appeals court held that Maryland’s law overstepped limits on how states can regulate commerce — specifically, a constitutional ban on states controlling business that takes place outside their borders. The majority ruling argues that since most manufacturers of generic drugs and medication wholesalers engage in trade outside Maryland, the state cannot control what prices they charge.

In a dissenting opinion, the panel’s third judge argued Maryland can regulate the drug prices charged within the state since it only is meant to affect medications being sold to its own residents.

Kesselheim, in an article published last month in the medical journal JAMA, argued a similar point.

Regardless, striking down a law on constitutional grounds can be particularly discouraging, says Rachel Sachs, an associate law professor at Washington University in St. Louis, who researches drug regulations.

“If it had been a rejection on vagueness grounds, that’s something you can cure with a more specific statute,” she says. “But the fact that they said this is unconstitutional poses real concern for other states.”

That’s important. While the federal government has talked a big game on bringing down drug prices, it’s done little. Instead, states have taken the lead — spurred by the budget squeeze pricey prescriptions impose on their Medicaid programs and on benefits packages for state employees.

But states have far fewer tools at their disposal than does Congress. Most state laws so far only tackle pieces of the problem — targeting a specific drug or particular practice, specialists in health law say.

“We’ll get more broad and better evolution on this issue if the federal government decides to take it seriously — which it hasn’t so far,” Kesselheim says.

In the meantime, Maryland’s law is only one of a bevy of approaches.

Other states have focused on price transparency laws. In California, drug companies must disclose in advance if a price might increase by more than a set percent, and the companies must justify that increase.

Drugmakers have sued to block the California law.

New York has limited what the state will pay for medications, establishing a process to review if expensive drugs are priced out of step with their medical value.

Since 2017, a number of states have passed laws regulating pharmaceutical benefits managers — the contractors who negotiate discounted drug coverage for insurance plans, but who rarely reveal what level of discount they actually pass on to consumers.

Health policy specialists expect that activity to continue, especially as drug prices show little sign of letting up.

“The states are going to keep trying and experimenting,” Sachs says. “This is a problem that isn’t going away.”

Even efforts such as Maryland’s — which targeted price gouging — will likely remain at the forefront.

“I don’t think this is the end of states trying to do something on price gouging,” says Ellen Albritton, a senior policy analyst at the consumer advocacy group Families USA, who consults with states on drug pricing policy. “It’s such an issue that offends people’s sensibilities. It’s crazy [that] people can do this.”

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