Pressure Mounts for Hospice Reform

— As part of a growing national dialogue around hospice abuse, trade groups and government watchdog agencies are pushing regulators to make changes.

By Ava Kofman

Last week, the four largest hospice trade associations jointly sent a detailed memo of policy proposals to the Centers for Medicare and Medicaid Services, which regulates the end-of-life care benefit. Their 34 recommendations, which span eight pages, directly address the alarming business practices outlined by a recent ProPublica-New Yorker investigation.

“The New Yorker-ProPublica investigation shook the industry to its foundation,” said Dr. Diane Meier, a geriatrician at New York’s Mount Sinai hospital and a leading authority on palliative care. “You have four major industry groups coming together, as they don’t always do, on a series of significant policy and regulatory changes for hospice. This suggests — contrary to public messages about this being just a few bad actors — that it’s not just a few bad actors. There are systemic problems with the lack of oversight and the profit motive.”

Industry leaders are not the only bloc pressuring CMS for greater hospice oversight. Senators and government watchdog agencies are also pushing the agency for concrete changes. Last week, the Government Accountability Office released a report asking that hospices be required to report observations of abuse and neglect, regardless of whether the alleged perpetrator works at the hospice. MedPAC, the congressional advisory panel on Medicare spending, has again endorsed modifying the hospice payment structure to reduce part of the financial incentive for enrolling ineligible patients. And in late December, the inspector general’s office at the Department of Health and Human Services announced that curbing the abuse of hospice patients was among its top unimplemented recommendations.

Drawing on state licensing records and federal data, our story highlighted how networks of entrepreneurs are propping up an alarming number of for-profit hospices in Nevada, Texas, Arizona and California. As part of their recommendations, the trade groups flag several specific ways that CMS could use its power to curb the “inappropriate” proliferation of hospice licenses, such as increasing the number of inspections for new providers, limiting Medicare hospice certifications in high-growth areas and cutting off funding to high-risk operators. ProPublica found that some of these new hospices improbably share staff, owners and addresses. These suspicious business practices, the trade organizations note, could be treated as red flags that would trigger prepayment scrutiny or billing audits.

“Providers don’t like surveys” — inspections — “and are usually not the ones to ask for more of them,” said Dr. Joan Teno, an expert on the industry and adjunct professor at the Brown University School of Public Health. “You’ll hear various entities paying lip service to reform, but what they’re saying here is that they want to fix the problem and offering specific recommendations for how to do so. It’s unusual and impressive.”

Among its proposals, the memo discusses the need to rein in predatory marketing schemes. ProPublica’s reporting found that profit-seeking providers can take advantage of the fact that many people don’t know what hospice is to recruit new patients who are not dying. Some hospice marketers — known in the industry as “community liaisons” or “community educators” — aggressively solicit new patients with promises of free housekeeping and trips to the beach and casino. Others treat physicians to cash bounties and bottle service at Las Vegas nightclubs to gin up referrals. The groups ask that CMS update its regulations to require hospices to develop policies on “ethical marketing practices.” (Such policies, they note, must prohibit kickbacks, disclose bonuses to marketers and mandate that hospices clearly explain the benefit to patients.)

ProPublica’s investigation pointed out that practically anyone can open a hospice. I came across hospices owned by vacation-rental superhosts, a man convicted of drug distribution and a criminal-defense attorney (who once represented a hospice employee convicted of fraud and was later investigated for hospice fraud himself). The trade associations have asked CMS to prohibit individuals with convictions for certain crimes from operating hospices and to require training and background checks for hospice administrators, noting that “unqualified or risky hospice leadership” could lead to fraud or poor quality of care.

It’s hard to require that hospice owners have appropriate qualifications, however, if the identity of those owners remains unknown. As private equity firms acquire an ever-greater share of the hospice market, many families have no way of untangling who actually operates their provider. This lack of transparency, the trade groups write, “makes accountability for poor performance difficult and makes it harder for patients and families to choose quality providers.” At the moment, it’s easier to research a hotel for your honeymoon than it is to research the hospice that will care for your loved one. But it doesn’t have to be this way: CMS could make hospices disclose their owners and major investors, the groups say. It could also revamp its Care Compare website — a sort of TripAdvisor for end-of-life care consumers — to prioritize quality metrics and make its data more accessible. In response to questions from a groundswell of readers in the wake of its reporting, ProPublica published a guide to help families research their provider and spot common signs of fraud. The trade groups propose that similar information be incorporated into the official Medicare handbook for hospice consumers.

Throughout the memo, the trade groups emphasize that CMS already has the authority to implement many of their suggested reforms. The next step, they say, is making sure the agency has the funding to actually carry out its essential oversight role. “Part of our plan is to offer support in advocating for the agency to have the resources it needs, and that’s part of our goal in sharing this with Congress,” said Mollie Gurian, a vice president at LeadingAge, an association of nonprofit eldercare providers, which co-authored the memo. Gurian and her peers in the field are in the process of scheduling a meeting with CMS, which did not respond to ProPublica’s request for comment. “We didn’t all come into these discussions with the same list, but we are all committed for hospice to be the special benefit that it is and we all agree that it is under threat,” Gurian said.

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Does Medicare Cover Hospice?

The answer is yes, but you must qualify and use a Medicare-approved hospice provider.

By Kate Ashford

As you or a loved one nears the end of life due to a terminal illness, hospice care might be a consideration. Hospice is a type of care in which a team of specialized health care professionals make someone who is terminally ill as comfortable as possible during the time they have remaining.

Medicare does cover hospice, but you must meet specific requirements [1]:

  • The hospice provider must be Medicare-approved.
  • You must be certified terminally ill by a hospice doctor and your doctor (if you have one), meaning you’re expected to live six months or less.
  • The hospice care must be for comfort care, not because you’re trying to cure your condition.
  • You must sign a statement opting for hospice care over other Medicare benefits to treat your illness. (See an example of this statement here [2].) If you’re thinking about seeking treatment to cure your illness, talk to your doctor — you can stop hospice care at any point.

Hospice care through Medicare generally takes place in your home or a facility where you live, such as a nursing home.

What hospice care is covered?

Hospice care providers care for the “whole person,” meaning they help address physical, emotional, social and spiritual needs [3].

  • All items and services needed for pain relief and symptom management.
  • Medical, nursing and social services.
  • Drugs to manage pain.
  • Durable medical equipment for pain relief and managing symptoms.
  • Aide and homemaker services.
  • Other covered services needed to manage pain and additional symptoms, and spiritual and grief counseling for you and family members.

In addition to you and your family members, your hospice care team may include some or all of the following:

You’ll also have the option of a hospice nurse and doctor who are on-call 24/7, for the sole purpose of giving your family support.

What will it cost?

Under Original Medicare, there are no costs for hospice care, although you’ll still pay any Medicare Part A and Medicare Part B premiums.

You’ll pay a copayment of up to $5 for each prescription for outpatient drugs to manage pain and symptoms. You may also pay 5% of the Medicare-approved amount for inpatient respite care — this is care you get in a Medicare-approved facility so your day-to-day caregiver can rest.

What isn’t covered?

Once your hospice benefit has begun, Medicare will not cover any of the following:

  • Curative treatment: Any treatment meant to cure your terminal illness or any related conditions.
  • Curative drugs: Prescription drugs meant to cure your condition.
  • Care from a hospice provider that wasn’t arranged by your hospice medical team. Once you have a hospice provider, you must get care arranged by them. You can still see your primary doctor or nurse practitioner if you’ve picked them to be the attending medical professional that helps manage your care.
  • Room and board: If you’re at home or you live in a nursing home or hospice inpatient facility, Medicare will not cover room and board. If your hospice team decides you need a short inpatient or respite care stay, Medicare will cover the costs, although you may owe a small copayment.
  • Care received as a hospital outpatient (such as in an ER), as a hospital inpatient or ambulance transport. However, Medicare will cover these services if they’re arranged by your hospice team or they’re not related to your terminal illness.

Starting hospice care

If you have Medicare Advantage, your plan can help you find a local hospice provider.

The hospice benefit is meant to allow you and your family to stay together at home unless you require care at an inpatient facility. If you need inpatient care at a hospital, the arrangements must be made by your hospice provider — otherwise you might be responsible for the costs of your hospital stay [4].

How long can you get hospice care?

If you’ve been in hospice for six months, you can continue to receive hospice care, provided the hospice medical director or hospice doctor reconfirms your terminal illness at a face-to-face meeting.

If you have other health issues that aren’t related to your terminal illness, Medicare will continue to pay for covered benefits, but generally, hospice focuses on comfort care.

Under your hospice benefit, you’re covered for hospice care for two 90-day benefit periods followed by an unlimited number of 60-day benefit periods. At the start of every benefit period after the first, you must be recertified as terminally ill.

What if you’re in a Medicare Advantage plan?

Once your hospice benefit begins, everything you need will be covered by Original Medicare, even if you decide to stay in your Medicare Advantage plan or another Medicare health plan. (You do have to continue paying the premiums.)

If you remain a member of a Medicare Advantage plan, you can use the plan’s network for services that aren’t related to your terminal illness, or you can use other Medicare providers. Your costs will depend on the plan and how you follow the plan’s rules.

Nerdy tip: If you start hospice care after Oct. 1, 2020, you can request a list of items, services and drugs from your hospice provider that they’ve classified as unrelated to your terminal illness and related conditions, including the reasons behind their inclusion on the list. (Find an example of this kind of statement here.)

Can you stop hospice care?

If your condition gets better or goes into remission, you may wish to end hospice care. You can stop hospice care at any point, but you must make it official: You’ll need to sign a form that states the date your care will stop.

Note that you should sign a form of this kind only if you are ending hospice — there are no forms with an end date when you start hospice care.

If you were in a Medicare Advantage plan, you’ll still be a member of that plan after you end hospice and are eligible for coverage from the plan. If you’re a member of Original Medicare, you can continue with Medicare after you end hospice care.

If you have additional questions about your Medicare coverage, visit or call 1-800-MEDICARE (800-633-4227, TTY: 877-486-2048).

Works cited

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Struggling with care — When is ‘end of life’ too much?


A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

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What Would Happen to Seniors in Nursing Homes Under the Republican Health Care Bill?

By Elizabeth O’Brien

[D]awn Burnfin’s 94-year-old grandmother recently had a massive stroke in a Missouri nursing home. She quickly recovered well enough to tell the end-of-life hospice workers caring for her to go home, since she had no plans to die.

But the Medicaid funds that help pay for her care are now up in the air.

“I don’t know where she would go,” Burnfin, 43, says of her grandmother, if she loses her bed in the nursing home. “It’s really scary.”

Included in the Better Care Reconciliation Act, the bill Senate Republicans have proposed to replace the Affordable Care Act, are an estimated $772 billion in federal cuts to Medicaid through 2026, plus a reduction in the funding formula that would sharply decrease spending beyond that. The nonpartisan Congressional Budget Office projected on Thursday that federal Medicaid spending in 2036 would be 35% less than under current law.

Proponents of the bill say the new Medicaid structure would increase states’ flexibility to design their Medicaid programs around the unique needs of their populations. But the proposed cuts have many like Burnfin wondering who will pay to keep her grandmother cared for?

While Medicaid is best known for insuring low-income Americans, the government program also provides a vital safety net to elderly Americans who need long-term care, either at home or in a facility. Medicaid covers about 60% of nursing home residents, and according to a 2015 study by Truven Health Analytics, roughly 2.2 million elderly Americans received Medicaid-financed long-term care in 2011. As more baby boomers reach older age, these numbers will only grow

Burnfin lives in Chisholm, Minn., not close enough to provide hands-on care to her grandmother, although though she has plenty of expertise: Burnfin herself works as a home care worker, providing in-home assistance to an elderly woman on Medicaid. Her own livelihood depends on the program’s health.

Medicaid is such an important safety net because Medicare, the federal health insurance program for those ages 65-plus, does not cover the kind of routine assistance that most elderly need: help with dressing, bathing, eating and other activities of daily living. According to government estimates, 70% of people turning 65 will eventually need such assistance in older age.

When it comes to finding—and financing—long-term care for older loved ones, most families are on their own. And many end up turning to Medicaid when their money runs out. It’s not hard to drain your life savings on nursing home care that runs around $82,000 per year but can go much higher in costlier areas of the country. To qualify for Medicaid for long-term care, applicants need to have depleted most of their resources. Criteria vary by state; in New York, for example, the asset limit is about $14,000, not including a certain amount of home equity.

Eligibility criteria would likely get even stricter under the Better Care Reconciliation Act, experts say. That’s because the bill would fundamentally change the entire Medicaid program, not just the parts affected by the ACA: it would switch Medicaid financing from an open-ended benefit to one that’s capped.

Instead of receiving increased federal funding to meet mounting needs—say, to fund opioid addiction treatment or to pay for a new breakthrough drug—beginning in 2020 states would receive a capped amount. This would represent “a transfer of risk, responsibility, and cost to the states of historic proportions,” according to a statement by the National Association of Medicaid Directors, a bipartisan organization representing leaders of state Medicaid agencies nationwide.

Spending caps would become even more harsh in 2025, when Medicaid spending could only rise each year with general inflation, which tends to lag medical inflation by several percentage points. “The bill’s Medicaid cuts are really about starving the program, and states won’t think about the long-term, they’ll think about surviving until the next year,” says Edwin Park, vice president for health policy at the Center on Budget and Policy Priorities.

Medicaid finances are already stretched, and there’s not that much fat to cut in the system. “It’s not like Medicaid systems have been rolling in cash under the current system, due to the need,” says Eric Carlson, a directing attorney in Justice in Aging, a nonprofit legal advocacy organization.

Nobody knows yet how states would respond to the cuts, but experts say all long-term care supports and services are vulnerable–that includes quality care in nursing homes for patients whose needs are best met in such facilities, and also in-home care for patients who can stay at home with assistance.

Among the limited choices states would have to cope with the cuts: they could restrict Medicaid eligibility, reduce the already-low payments Medicaid makes to medical providers, and reduce the number of services that Medicaid covers. In-home care is generally considered an optional benefit in state Medicaid programs, so it would likely be on the chopping block if the Senate bill becomes law. Nursing home care, by contrast, is considered mandatory. “What’s horrible about the bill is it will force institutionalization,” says Michael J. Amoruso, president-elect of the National Academy of Elder Law Attorneys and a practicing attorney in Rye Brook, N.Y. In other words, the bill would force older, vulnerable citizens out of their homes and into nursing facilities.

This week, Senate Majority Leader Mitch McConnell postponed the Senate’s vote on the bill until after the July 4 recess, hoping to shore up support. Burnfin agrees with critics who say the Senate’s actions are shortsighted. Keeping older patients at home for as long as possible not only increases their quality of life, it also generates economic activity in their communities, Burnfin says: the residents continue to pay property taxes on their homes and consume goods and services in their area. They also employ caregivers in greater numbers than nursing homes. The ratio of caregivers to care recipients is 1:1 at a patient’s home, but about 9:1 in a typical nursing home, Amoruso says.

Burnfin has an even more personal connection to Medicaid: her family is also insured through the program. She works full-time as the primary breadwinner for her family, but her income remains low enough that they qualify. Her husband is disabled, and the four of her children who live at home have complex medical needs. She worries for their future as well.

“We couldn’t survive without the Medicaid,” she says. “We just couldn’t.”

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