Good news came out from the Centers for Disease Control and Prevention Wednesday: Preliminary data shows reported drug overdoses declined 4.2% in 2018, after rising precipitously for decades.

“It looks like this is the first turnaround since the opioid crisis began,” says Bertha Madras who served on President Trump’s opioid commission, and is a professor of psychobiology at Harvard Medical School.

She says it won’t be entirely clear until the CDC finalizes the numbers but, “I think the tide could be turning.”

But not everyone was celebrating. Some states actually saw double-digit increases.

“It’s deflating,” Rachel Winograd says. She’s an associate research professor at the University of Missouri-St. Louis. “It’s incredibly discouraging to see the increase in Missouri in 2018 that happened at the same time as we really ramped up so many efforts to save lives and improve lives in our state.”

The provisional data shows Missouri deaths increased by 17% — one of 18 states that saw a year-over-year increase.

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Over the last several years, Missouri has received $65 million in federal grants to address the opioid crisis, Winograd says, and she has helped the state decide where and how to spend that money. They’ve focused on expanding access to medication-assisted treatment, and “saturating our communities with naloxone — the opiate overdose antidote,” she says.

“Any scholar who’s been studying this epidemic will tell you that those are effective tools at saving lives. We’ve drastically increased access to those services and we know we’ve saved thousands of lives.

“The fact that the numbers didn’t go down and that people were dying at an even higher rate — it was devastating,” Winograd says.

The numbers out Wednesday are not final, notes Farida Ahmad, mortality surveillance lead of the National Center for Health Statistics at the CDC. She says they should be close to the final numbers, though. For provisional data, “our threshold is for 90% completeness,” she says.

Michael Botticelli, the executive director of the Grayken Center for Addiction at Boston Medical Center and formerly President Obama’s drug czar, says the geographic variation in drug deaths is troubling.

“I think it’s important to pay attention to and really understand what is happening in each of these states, and why are some states seeing dramatic increases versus those seeing dramatic decreases?” he says.

The reasons for this geographic variation are numerous. For one, this data only reflects the difference from one year to the next, so states that had a bad year in 2017, can show an improvement in 2018, even if the overall picture is still grim.

Another variable is fentanyl, the highly potent synthetic opioid that’s been responsible for a rising number of overdoses in recent years. Some states have a lot of fentanyl in their drug supply, and others do not.

“We saw increases all along the Mississippi river, and I would not be surprised if that was due to an increase in the proportion of fentanyl in their drug supply,” Winograd says. Deaths from fentanyl continue to rise, according to Ahmad from the CDC.

Other variations in the drug supply could contribute to the differences from state to state, says Christopher Ruhm, a professor of public policy at the University of Virginia. He notes stimulants have a different geographic spread than fentanyl, and those deaths are also on the rise.

“Some of this may be due to the nature of the drug epidemic in different places, some of it may also be due to how much we are providing medication-assisted treatment, and engaging in other policies to try to address this problem,” Ruhm says.

The social safety net also plays a role, says Winograd. In Missouri, “we just have fewer resources to help people in need,” she says.

“We have a lack of housing, incarceration rates are increasing — these are all connected and making the most vulnerable people in our society at highest risk of overdose deaths.”

Missouri was among five states that showed increased overdose numbers and had not expanded Medicaid, Winograd notes. Medicaid expansion means more people have coverage for addiction treatment, and research shows it’s making a difference.

Ohio was a bright spot on the 2018 map, showing a 22% decrease in 2018, although in raw numbers, it still had 4,000 reported deaths.

“It is still a nightmare. And the danger in media over-portraying this is actually quite substantial,” says Shawn Ryan, an addiction doctor in Ohio and past-president of the Ohio Society of Addiction Medicine. “If we look at just that decrease nationally — which is not that big — we’re missing the point. In order to get back to baseline, we have a very long way to go.”

In the CDC’s preliminary national numbers, 67,744 people are reported to have died from drug overdoses in 2018. Even though that’s several thousand less than died from drug overdoses in 2017, it’s still many, many more people than died of AIDS in the worst years of the crisis.

The decline should not be a signal to slow down efforts — or funding — to combat the epidemic, Ryan says.

He cites the proposed CARE Act, a legislative effort led by Senator Elizabeth Warren, D-Mass., and Representative Elijah E. Cummings, D-Md., which would allocate $100 billion over 10 years for addiction and recovery services. The CARE Act is modeled on the Ryan White Act, put in place to combat the AIDS epidemic.

“That’s actually much more in line with what’s needed,” says Ryan.

$100 billion would dwarf past federal funds for the epidemic. Grants from the State Targeted Response to the Opioid Crisis program, authorized by the 21st Century Cures Act, totaled $1 billion. In 2019, State Opioid Response federal grants are set to total $1.4 billion.

“If you look at the dollars spent to date, the fact that we’ve had the impact we’ve had is actually because of people being invested and working very hard for not that many dollars,” says Ryan.

Boticelli agrees that the only way to ensure the national trend continues is to adequately fund it. “We can’t look at a 5% reduction and say our work is done. I think it basically shows us that we have to redouble our efforts,” he says. “How are we going to ensure that states have the resources that they need to continue to focus energy on this epidemic?”

In a statement Wednesday, Health and Human Services Secretary Alex Azar celebrated the decline and indicated that federal funding won’t be going away. “By no means have we declared victory against the epidemic or addiction in general. This crisis developed over two decades and it will not be solved overnight,” Azar wrote.

Rachel Winograd says for her, the increase in deaths in Missouri is an indication that there’s much more to do.

“I am very proud of what Missouri has done. I don’t think we should have done anything differently,” she says. “And I do think that we’ve been even more aggressive than many of the states that saw decreases, in terms of our focus on evidence-based solutions.

“It’s not that we did the wrong thing — it’s that we didn’t do enough of the right thing,” she adds. “And we need more sustainable funding to do that.”

Carmel Wroth contributed reporting to this story.

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A global megacorporation best known for Band-Aids and baby powder may have to pay billions for its alleged role in the opioid crisis. Johnson & Johnson was the sole defendant in a closely-watched trial that wrapped up in Oklahoma state court this week, with a decision expected later this summer. The ruling in the civil case could be the first that would hold a pharmaceutical company responsible for one of the worst drug epidemics in American history.

Oklahoma Attorney General Mike Hunter‘s lawsuit alleges Johnson & Johnson and its subsidiary Janssen Pharmaceuticals helped ignite the opioid crisis with overly aggressive marketing, leading to thousands of overdose deaths over the past decade in Oklahoma alone.

The trial took place over seven weeks in the college town of Norman. Instead of a jury, a state judge heard the case.

During closing arguments Monday, Hunter called the company the “kingpin” of the opioid crisis.

“What is truly unprecedented here is the conduct of these defendants on embarking on a cunning, cynical and deceitful scheme to create the need for opioids,” Hunter said.

The state urged Judge Thad Balkman, who presided over the civil trial for seven weeks, to find Johnson & Johnson liable for creating a “public nuisance” and force the company to pay more than $17 billion over 30 years to abate the public health crisis in the state.

Driving the opioid crisis home has been a cornerstone of the Oklahoma’s lawsuit. In closing arguments Monday, one of the state’s attorneys, Brad Beckworth, cited staggering prescribing statistics in Cleveland County, where the trial took place.

“What we do have in Cleveland County is 135 prescription opioids for every adult,” Beckworth explained. “Those didn’t get here from drug cartels. They got here from one cartel: the pharmaceutical industry cartel. And the kingpin of it all is Johnson & Johnson.”

Johnson & Johnson’s attorney Larry Ottaway, rejected that idea in his closing argument, saying the company’s products, which had included the fentanyl patch Duragesic and the opioid-based pill Nucynta, were minimally used in Oklahoma.

He scoffed at the idea that physicians in the state were convinced to unnecessarily prescribe opioids due to the company’s marketing tactics.

“The FDA label clearly set forth the risk of addiction, abuse and misuse that could lead to overdose and death. Don’t tell me that doctors weren’t aware of the risks,” Ottaway said.

Ottaway played video testimony from earlier in the trial, showing Oklahoma doctors who said they were not misled about the drugs’ risks before prescribing them.

“Only a company that believes its innocence would come in and defend itself against a state, but we take the challenge on because we believe we are right,” Ottaway said in his closing argument.

Johnson & Johnson fought on after settlements

Initially, Hunter’s lawsuit included Purdue Pharma, the maker of OxyContin. In March, Purdue Pharma settled with the state for $270 million. Soon after, Hunter dropped all but one of the civil claims, including fraud, against the two remaining defendants.

Just two days before the trial began, another defendant, Teva Pharmaceuticals of Jerusalem, announced an $85 million settlement with the state. The money will be used for litigation costs and an undisclosed amount will be allocated “to abate the opioid crisis in Oklahoma,” according to a press release from Hunter’s office.

Both companies deny any wrongdoing.

The legal liability of ‘public nuisance’

Most states and more than 1,600 local and tribal governments are suing drugmakers who manufactured various kinds of opioid medications, and drug distributors. They are trying to recoup billions of dollars spent addressing the human costs of opioid addiction.

“Everyone is looking to see what’s going to happen with this case, whether it is going to be tobacco all over again, or whether it’s going to go the way the litigation against the gun-makers went,” says University of Georgia law professor Elizabeth Burch.

But the legal strategy is complicated. Unlike the tobacco industry, from which states won a landmark settlement, the makers of prescription opioids manufacture a product that serves a legitimate medical purpose, and is prescribed by highly trained physicians — a point that Johnson & Johnson’s lawyers made numerous times during the trial.

Oklahoma’s legal team based its entire case on a claim of public nuisance, which refers to actions that harm members of the public, including injury to public health. Burch says each state has its own public nuisance statute, and Oklahoma’s is very broad.

“Johnson & Johnson, in some ways, is right to raise the question: If we’re going to apply public nuisance to us, under these circumstances, what are the limits?” Burch says. “If the judge or an appellate court sides with the state, they are going to have to write a very specific ruling on why public nuisance applies to this case.”

Burch says the challenge for Oklahoma has been to tie one opioid manufacturer to all of the harms caused by the ongoing public health crisis, which includes people struggling with addiction to prescription drugs, but also those harmed by illegal street opioids, such as heroin.

University of Kentucky law professor Richard Ausness agrees that it’s difficult to pin all the problems on just one company.

“Companies do unethical or immoral things all the time, but that doesn’t make it illegal,” Ausness says.

If the judge rules against Johnson & Johnson, Ausness says, it could compel other drug companies facing litigation to settle out of court. Conversely, a victory for the drug giant could embolden the industry in the other cases.

Earlier in the trial, the state’s expert witness, Dr. Andrew Kolodny, testified that Johnson & Johnson did more than push its own pills — until 2016, it also profited by manufacturing raw ingredients for opioids and then selling them to other companies, including Purdue, which makes Oxycontin.

“Purdue Pharma and the Sacklers have been stealing the spotlight, but Johnson & Johnson in some ways, has been even worse,” Kolodny testified.

Kolodny says that’s why the company downplayed to doctors the risks of opioids as a general class of drugs, knowing that almost any opioid prescription would benefit its bottom line.

The state’s case also focused on the role of drug sales representatives. Drue Diesselhorst was one of Johnson & Johnson’s busiest drug reps in Oklahoma. Records discussed during the trial showed she continued to call on Oklahoma doctors who had been disciplined by the state for overprescribing opioids. She even continued to meet with doctors who had patients who died from overdoses.

But Diesselhorst testified she didn’t know about the deaths, and no one ever instructed her to stop targeting those high-prescribing physicians.

“My job was to be a sales rep. My job was not to figure out the red flags,” she said on the witness stand.

The role and responsibility of doctors

Throughout the trial, Johnson & Johnson’s defense team avoided many of the broader accusations made by the state, instead focusing on the question of whether the specific opioids manufactured by the company could have caused Oklahoma’s high rates of addiction and deaths from overdose.

Johnson & Johnson’s lawyer, Larry Ottaway, argued the company’s opioid products had a smaller market share in the state compared to other pharmaceutical companies, and he stressed that the company made every effort when the drugs were tested to prevent abuse. He also pointed out that the sale of both the raw ingredients and prescription opioids themselves are heavily regulated.

“This is not a free market,” he said. “The supply is regulated by the government.”

Ottaway maintained the company was addressing the desperate medical need of people suffering from debilitating, chronic pain — using medicines regulated by the Food and Drug Administration and the Drug Enforcement Administration. Even Oklahoma purchases these drugs, for use in state health care services.

Next steps

Judge Thad Balkman is expected to announce a verdict in August.

If the state’s claim prevails, Johnson & Johnson could, ultimately, have to spend billions of dollars in Oklahoma helping to ease the epidemic. State attorneys are asking that the company pay $17.5 billion over 30 years, to help abate” the crisis in the state.

Balkman could choose to award the full amount, or just some portion of it, if he agrees with the state’s claim.

“You know, in some ways I think it’s the right strategy to go for the $17 billion,” Burch says. “[The state is saying] look, the statute doesn’t limit it for us, so we’re going to ask for everything we possibly can.”

In the case of a loss, Johnson & Johnson is widely expected to appeal the verdict. If Oklahoma loses, the state will appeal, Attorney General Mike Hunter said Monday.

This story is part of NPR’s reporting partnership with StateImpact Oklahoma and Kaiser Health News, a nonprofit news service of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

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The Trump administration has dropped one of the meatiest portions of its plan to reduce drug prices.

The Department of Health and Human Services said it will no longer pursue a rule that would have prohibited the payment of certain rebates on drugs in Medicare Part D and Medicaid plans.

The idea was to target the middlemen, pharmacy benefit managers, whose negotiations with drugmakers and insurers influence the costs consumers pay for drugs.

The hope was the rule would have effectively pressured drugmakers to give discounts to consumers instead of middlemen, HHS secretary Alex Azar said in remarks to the media in February. “Passing discounts directly on to the patient will move us toward a real market for drugs,” said Azar. “We’re going to fundamentally rewire how we pay for drugs in this system.”

Right now, if you’re a Medicare Part D beneficiary, and you need to pick up a drug that has a $120 list price, you might have to pay that full price, even if the middleman that negotiates on behalf of your insurer only pays a net price of $100 for it, after rebates. The idea of this proposal was that the consumer would only have to pay the discounted price.

When the rule was first announced, drugmakers supported the idea, and some drug pricing experts said it could be an effective move. “This is a huge potential change, transformative,” Dr. Walid Gellad, director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh told NPR.

But some critics were concerned that the move wouldn’t address drugs’ list prices that are the starting point for negotiations.

Also, there was a worry that the elimination of rebates could ultimately cost seniors more, in higher premiums on their Medicare plans. The nonpartisan Congressional Budget Office in May determined the plan would cost the federal government $177 billion over nine years, largely from increases in the government’s share in the cost of premiums.

In a briefing with reporters Thursday, Azar said the administration scrapped the plan after getting feedback from the public and stakeholders. “At the end of the day, while we support the concept of getting rid of rebates, while we appreciate and are passionate about the problems and the distortions in the system caused by this opaque rebate system, we’re not going to put seniors at risk of their premiums going up.”

“Congress perhaps might even take this up — they have more tools than we do,” Azar said. “They can actually look more holistically at changes to the system that could also mitigate or protect seniors from bearing any impact of change. I don’t have those tools; they might have those tools.”

A senior Trump administration official, who spoke on background during a separate briefing Thursday, echoed those sentiments, saying their primary focus is to support a legislative deal to lower drug prices and that there was concern this change would disrupt those efforts.

Drugmakers were in favor of trying to bring consumer prices down by targeting middlemen. The drug industry trade group PhRMA called the rollback of the plan “a blow to seniors who could have paid less for their medicines at the pharmacy counter.”

“Of all the policies proposed in Washington right now, this was the only proposal that would provide immediate savings at the pharmacy counter, instead of only saving the government or insurance companies money,” said Holly Campbell, PhRMA’s deputy vice president of public affairs in a statement.

Other stakeholders cheered the administration’s reversal of the proposed rule, including groups representing private insurers, public sector health plans and pharmacy benefit managers. They pointed to the prices set by drugmakers as a better focus for efforts to reduce drug costs.

“Any solution should start with addressing drug prices,” T.J. Crawford, a spokesman for CVS Health, which operates a large pharmacy benefit manager, wrote to NPR.

Matt Eyles, president and CEO of America’s Health Insurance Plans, said in a statement: “As we all know, drug prices and price increases are set and controlled solely by drugmakers. They alone could decide to reduce prices – and can do so today.”

The rebate reversal is the second defeat for the administration on drug pricing in a week, coming just days after a court struck down another pillar of its drug pricing plans, a proposed regulation to require that drug companies disclose prices in ads.

Azar says the administration hasn’t given up on lowering drug prices. But Congress will have to play a bigger role. “We have many other things that we’re doing in drug pricing,” he says. “We are working on a bipartisan basis with Congress on drug pricing legislation.”

The White House official who briefed reporters Thursday said people in the administration don’t plan to “twiddle our thumbs” while the legislative process plays out, and are working on a number of plans.

President Trump hinted at one idea last week — a “most favored nation” clause that would tie American drug prices to what other countries pay. The administration has not released any details about how that would work or when it would roll out.

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Updated 6:30 p.m.

The Trump administration has announced an ambitious plan to change treatment for kidney disease in the United States.

President Trump signed an executive order Wednesday directing the Department of Health and Human Services to develop policies addressing three goals: reducing the number of patients developing kidney failure, reducing how many Americans get dialysis treatment at dialysis centers and making more kidneys available for transplant.

“With today’s action, we’re making crucial progress on another core national priority: the fight against kidney disease,” Trump said at a speech prior to signing the order.

Kidney disease is the ninth-leading cause of death in the U.S. and a major expense for the federal government. Medicare pays for end-stage renal disease treatment, including dialysis and kidney transplant.

“Taxpayers spend more on kidney disease — over $110 billion — than we do on the National Institutes of Health, the Department of Homeland Security and NASA combined,” Joe Grogan, head of the White House’s Domestic Policy Council told reporters.

The executive order pushes for changes in three areas: prevention, dialysis care and kidney donation. To implement parts of the order, the Centers for Medicare and Medicaid Services announced Wednesday five proposed payment models intended to increase innovation in the delivery of kidney care.

Better prevention of kidney failure is desperately needed, according to Dr. Holly Mattix-Kramer, a kidney specialist at Loyola University Chicago and the president of the National Kidney Foundation. Mattix-Kramer was among dozens of kidney specialists and patient advocates who attended the announcement Wednesday.

“We’re extremely excited,” she says. “For so long we felt like no one was paying attention to this epidemic of kidney disease.”

One problem, she explains, is that there hasn’t been financial incentive to get doctors to screen for kidney disease or to diagnose and educate patients about it. “Once you get kidney failure then there’s a payment structure for that,” she says. “But there lacked a good payment structure incentive for preventing kidney failure, which seems not intuitive and seems obviously something that we should fix.”

The executive order proposes to change the way Medicare providers are paid to motivate them to focus on patient education and preventing the progression of kidney disease. It also calls for an awareness campaign. “Forty percent of Americans with some stage of kidney disease do not know they have it,” Health and Human Services secretary Alex Azar told reporters on a call Wednesday morning.

A key focus of the executive order is effort to encourage in-home dialysis. One of the new, proposed CMS models incentivizes clinicians to offer this option to patients.

Currently, most dialysis is delivered at dialysis centers, a multibillion-dollar industry dominated by two for-profit companies. In-center dialysis can be time-consuming and burdensome for patients.

“Currently only 12% of American dialysis patients receive it at home. That would compare to 56% in Guatemala and 85% in Hong Kong,” said Azar. “We want to get to 80% of those who are under treatment either in-home dialysis or transplanted eventually — so a radical change from where we stand now.”

CMS Administrator Seema Verma explained that the current system prioritizes payment to in-center dialysis, but her agency wants to start to incentivize in-home dialysis and transplants.

“The way we currently pay for chronic kidney disease and kidney failure isn’t working well for patients,” said Verma in a statement.

Mattix-Kramer says the administration’s targets for increasing the proportion of patients getting dialysis at home may be overly ambitious. “It’s great to have big goals like that, but I do think 80% is going to be incredibly difficult,” she says.

For a lot of her patients, it wouldn’t be easy to switch to in-home treatment. “You need social support and you need a clean house and you need someplace to have equipment. Many of our patients live in areas where they don’t even have a grocery store in their neighborhood,” she says. “A lot of those socioeconomic issues would need to be addressed.”

Another focus of the executive order is the organ transplant system. Currently, close to 100,000 people are on a waiting list for kidneys.

“Many, many people are dying while they wait,” Trump said, addressing a room full of kidney doctors, advocates and patients in Washington, D.C., just before signing the executive order. “We’ll do everything we can to increase the supply … of the available kidneys and getting Americans off these waitlists.”

Azar said he believes it’s possible to double the number of kidneys available for transplant by 2030. “There is currently a lack of accountability and wide variability among these organ procurement organizations,” he said. “The executive order will demand a much higher level of accountability.” He also said living donors could receive compensation from the government for lost wages and child care.

Finally, the executive order encourages research and development of an artificial kidney, an innovation that could someday replace the need for transplants.

Administration officials touted Wednesday’s news as the first major action related to kidney disease in decades. Previous administrations, including Barack Obama’s, have suggested similar initiatives, but not much has changed.

Andy Slavitt, who ran the Centers for Medicare and Medicaid Services under President Obama, praised Wednesday’s announcement on Twitter. “Care of kidney patients has been broken in the US for a long time, plagued with a corporate duopoly [and] a lower income minority population losing out,” he wrote.

But he also pointed out that as the Trump administration makes this announcement, it is arguing in court that the Affordable Care Act should be struck down as unconstitutional. “There is one law that makes this new change possible. The same law that requires people with [preexisting] conditions get coverage. The ACA,” he tweeted. “Without it, there is no authority to do this.”

It was unclear how quickly these changes could roll out. Frequently, Trump’s executive orders instruct agencies to develop federal rules, a lengthy bureaucratic process. One more immediate change is in how Medicare providers are reimbursed; CMS announced that its proposed payment models would roll out starting in January 2020.

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California has become the first state in the country to offer government-subsidized health benefits to young adults living in the U.S. illegally.

The measure signed by Gov. Gavin Newsom on Tuesday extends coverage to low-income, undocumented adults age 25 and younger for the state’s Medicaid program.

Since 2016, California has allowed children under 18 to receive taxpayer-backed healthcare despite immigration status. And, state officials expect that the plan will cover roughly 90,000 people.

“The law will not give health insurance benefits to everyone 25 and younger, but only those whose income is low enough to qualify,” reported the Associated Press.

The idea of giving health benefits to undocumented immigrants is supported by most of the Democratic candidates running for president, and California’s move comes as the Trump administration continues to ramp up its hardline crackdown on unauthorized immigrants. On Tuesday, Newsom said the state law draws a sharp contrast with Trump’s immigration policies.

“If you believe in universal health care, you believe in universal health care,” Newsom said. “We are the most un-Trump state in America when it comes to health policy.”

In California, extending health benefits to undocumented immigrants is widely popular. A March survey conducted by the nonpartisan Public Policy Institute of California found that almost two-thirds of state residents support providing coverage to young adults who are not legally authorized to live in the country.

California, the institute notes, has more immigrants than any other state. And an estimated 14% of them are living in the state without legal status.

A national poll suggests that many Americans across the country are far less accepting of the notion of giving health coverage to those who came into the U.S. illegally. A CNN poll conducted after the Democratic debates last month found that 59% of those surveyed do not think government-backed health coverage should be provided to undocumented immigrants.

In most states, people living in the country illegally are not eligible for federal health insurance programs like Medicaid and Medicare, except is some cases, like medical emergencies and pregnancies, according to the National Conference of State Legislatures.

Republican lawmakers in California criticized the law, arguing that the state should be spending health care dollars on those living in the state legally.

“We are going to be a magnet that is going to further attract people to a state of California that’s willing to write a blank check to anyone that wants to come here,” said Republican Senator Jeff Stone at a May legislative hearing. “We are doing a disservice to citizens who legally call California their home.”

The plan does not cover all unauthorized immigrants under 25, only those whose incomes are low income to qualify. State officials estimate in the first year the program will cover around 138,000 residents and cost California taxpayers $98 million.

Trump has publicly attacked Newsom’s plans.

“It’s crazy what they’re doing. It’s crazy,” Trump told reporters last week. “And it’s mean, and it’s very unfair to our citizens. And we’re going to stop it, but we may need an election to stop it.”

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We all hope for some peace and comfort at the end of life. Hospices are designed to make that possible, relieving pain and providing emotional and spiritual support. But two new government studies released Tuesday morning find that the vast majority of hospices have sometimes failed to do that.

And there’s no easy way for consumers to distinguish the good hospices from the bad.

The reports are the government’s first to look at hospice deficiencies nationwide. The Office of the Inspector General in the Department of Health and Human Services found that from 2012 through 2016, health inspectors cited 87% of hospices for deficiencies. And 20% percent of hospices had lapses serious enough to endanger patients.

Deputy Regional Inspector General Katherine Harris cites the case of a patient who had untreated bed sores, or pressure ulcers, on both heels.

“These ulcers rapidly worsened,” says Harris. “The patient developed gangrene and needed a leg amputation.”

In the dry terminology of government reports, this is called “poor care planning.” And having plans of care developed in conjunction with the patient and the patient’s family, Harris says, is a fundamental requirement of hospice,.

“So when we discover that hospices are not doing them, there is reason for concern,” she says.

For example, there’s the case of Karen Bishop Collings and her 85-year-old dad, Dean Bishop. Though Bishop had chronic lung disease, he’d been doing OK and living independently. Then, last winter, he was hospitalized with pneumonia. When he was transferred to a residential care facility to recuperate, he began receiving hospice services. That was a surprise to his daughter.

“We only agreed to pre pre-assessment of his conditions, to even see if he qualified for hospice or palliative care,” she says.

Collings has shared some of her father’s medical records with NPR, and they verify her recollection. The hospice never held a meeting with Bishop or the family to establish a care plan. So Collings was shocked when hospice workers gave her father two new medications: morphine and the anti-anxiety drug Ativan.

“We knew something distressing had happened,” she says. “His whole physicality and mental capacity was completely altered.”

Dean Bishop died a couple of days later.

If this hospice had previously been cited for deficiencies, Collings would have had a hard time finding out. The Centers for Medicare and Medicaid Services, or CMS, doesn’t make that information available on Hospice Compare, its website for consumers, even though the agency has the authority to post at least some of that data.

“We live in a time when we don’t even think about booking a hotel without checking its ratings and reviews,” says Harris. “Why do we demand less for hospices?”

The reports also highlight the the options CMS has for disciplining hospices are few. The agency can drop substandard hospices from the Medicare program altogether. But it lacks the legal authority to assess fines. It would take an act of Congress to give CMS that power.

In response to the Inspector General’s reports, CMS issued a written statement that the agency “has zero tolerance for abuse and mistreatment of any patient.” The statement also says that the agency has added consumer feedback to the Hospice Compare website. Katherine Harris thinks that’s not enough.

“There are a lot of great hospices out there,” Harris says. “There are a lot of highly skilled, committed professionals who are dedicated to helping others leave this life in comfort and with dignity — and the public should know about them.”

The amount of money that Medicare spends on hospice services has roughly doubled since 2006. But Harris says this isn’t just a matter of taxpayer dollars.

You’re only going to die once, she says. It’s important that things go right.

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