Transfer trauma: America's seniors suffer as care system pushes them between sites

Rafiyq Friend bends his tall frame over his eldest brother and, with a paper straw, releases drops of water on to Thomas’s tongue. Thomas lost the strength to close his mouth a few days ago and his labored breathing – which hauls up his emaciated chest and then drops it – has turned his lips and tongue white with dryness.

Cancer has now gotten the best of Thomas’s lungs, but only year ago he was relatively healthy, living alone, still a protective big brother to seven younger siblings.

Thomas is here now, in room 489 of Vitas Hospice in Upper Darby, a neighborhood near Philadelphia, after a series of transfers – over the past year, Thomas has had to move between hospitals and nursing homes at least six times, Rafiyq tells me, some part of him left behind each time.

Transfer trauma, a nonclinical term for what elders experience when they are moved from one facility to another, is something elder care advocates see families confront every day. “It’s extremely common,” Eric Carlson of Justice in Aging said. “It’s a very dangerous point in the life of a nursing facility resident when the Medicare has ended.”

Nursing home managers who are pressured by owners to maximize profits regularly evict residents who need too much care or are coming to the end of their Medicare reimbursements. Federal regulations require that facilities help residents to apply for Medicaid, which would enable them to stay on in the facility but would reimburse that facility at a lower rate. Facilities are instead routinely forcing vulnerable and uninformed elders out.

“There are business consultants who specialize in maximizing a facility’s Medicare revenues,” Carlson said. “There are probably ways of doing it legally, but there are also ways of doing it illegally, improperly, and you see too much of that.”

“Everybody loves Shorty,” Rafiyq told me from across his brother’s hospice bed. Thomas kept his siblings out of trouble, put them on a good path, took in nephews and grandchildren. For at least 15 years, Thomas lived in a retirement community in West Philadelphia, where he was tenant council president. His underlying diseases, Crohn’s and COPD, were stable for years, but last March Thomas began to feel unwell and started showing up at his parent’s house and staying for days at a time. A bout of pneumonia put him in the hospital.

Then the troubling series of moves began, first to Delaware County Memorial hospital, west of Philadelphia, then Westgate Hills rehabilitation and nursing center, Thomas Jefferson University hospital, Pennsylvania Presbyterian medical center, and Powerback Rehabilitation. Powerback is run by a national holding company, Genesis, which, as a nursing home chain, operates 400 facilities in 26 states nationwide and provides rehabilitation therapy in another 1,400 locations. Genesis has settled numerous multimillion-dollar lawsuits for financial and care violations. When the Centers for Medicare and Medicaid Services changed national reimbursement rules last fall, lowering compensation for therapy, the for-profit company promptly laid off 585 of its staff therapists.

While Thomas was at Powerback, he met Michael Johnson, a member of the national long-term care ombudsman program. Ombudsmen like Johnson oversee facilities and are the primary contact for residents who experience poor care, neglect, or abuse. Johnson said Thomas was well-liked among the staff and residents at Powerback, but that the facility was not delivering the rehabilitation and recovery it had promised. The Friend family hoped the skilled care would allow Thomas to return to his baseline level of health, before he got sick, and return home. But, Rafiyq and Johnson told me, the rehab never happened. Rafiyq would find Thomas in a chair in the hallway with a blanket over his head when he visited. Thomas went back to the hospital with pneumonia, his physical and mental health deteriorating before his family’s eyes.

“It’s OK if you say to the family: ‘Your hopes and dreams of him getting back to walking and talking and living on his own are not realistic,’” Johnson said. “But the facility wasn’t saying that. They weren’t doing anything, really.”

Then Thomas was told that he no longer had a payer – his Medicare, which had to that point fully covered his stay at Powerback, had run out. The family had no pot of gold to pay the facility on their own – which could run anywhere from $300 to $500 a day – and no one able to take Thomas into their home full-time, which would have required paying for skilled home care out of pocket. Their only choice was to apply for Medicaid and hope that Powerback or another facility would accept it.

Powerback never informed the Friends of what their decision was. Johnson said: “They simply said: ‘You’re going to be discharged. We have to discharge him.’” It was late December and the holidays were coming. Rafiyq and his family began to look at other facilities. Johnson suggested to both parties that Powerback help Thomas apply for Medicaid, but Powerback said it had no Medicaid beds. Which was not true, Johnson found out by calling the Pennsylvania department of health. All its beds were dual beds, designated for both Medicare and Medicaid patients.

Related: Up to 43m Americans could lose health insurance amid pandemic, report says

But like so many care facilities, Powerback organized patients by reimbursement levels. They kept higher-paying Medicare recipients on one floor where “skilled nursing” services were available; they kept lower-paying Medicaid, or “long-term” recipients, on another. In this way, the facility made a clear distinction between the two rates of state and federal reimbursement. Medicare was the most lucrative; there was a hurry to get Medicaid patients out of the facility to free up more beds for Medicare residents. The facility maintained its own quotas of resident types in order to maximize profits. According to law, there are five reasons a resident can be evicted, including disturbing other residents or failure to pay. Any of these reasons are routinely used to evict unwanted residents.

Johnson convinced Powerback’s social worker to agree to work with Rafiyq to apply for Medicaid (which is up to three months retroactive). But while the paperwork was still being completed, Powerback checked Thomas into Jefferson hospital, where he stayed for several days. “They tried to make plans with Powerback to transfer him back, but Powerback was like, ‘No, we’re not taking him back,’” Johnson said.

This is a common nursing home practice referred to as “hospital dumping”. Have a Medicaid patient you don’t want? Find a reason to send them to the hospital – and there’s always a reason. “Just dump him in the hospital and it becomes the hospital’s responsibility to find a safe discharge for the person,” Johnson said.

While the Friends frantically searched for a new home for him, Thomas was diagnosed with advanced lung cancer. Vitas Hospice seemed the most logical next step. By now, neglect and inconsistent care at prior facilities had caused a bedsore at the bottom of Thomas’s spine to grow; eventually it became a deep wound an inch wide and about five inches long.

Nursing homes were initially run by religious denominations for their parishioners or low-income community members. County homes, once called poorhouses, were also available to elders who had nowhere else to go. But it wasn’t until 1965, with the passage of the Older Americans Act and the advent of Medicare and Medicaid, reimbursed at both the federal and state levels, that nursing home care became a profitable industry. Non-profit, often family-run, facilities popped up all across the country in the 1970s. Increasingly, in recent decades, large for-profit operators like Genesis have moved in, which – as with so many other business categories – has caused consolidation, remote management, and the quick-fire flipping of properties.

Federal and state governments have largely been silent on the corporatization of nursing and long-term care facilities (in Pennsylvania, the department of health approves sales of nursing homes). Last year, Pennsylvania’s two US senators released national data on the Special Focus Facility Program – about 400 facilities reported by residents, families and inspectors as troubled. It was information that the Centers for Medicare and Medicaid Services had long refused to release, probably because of industry pressures.

Related: Andrew Cuomo gave immunity to nursing home execs after big campaign donations

“What often happens is folks are entering into the nursing home system in crisis,” Lori Walsh said. Walsh is the program director for Carie – the Center for Advocacy for the Rights and Interests of the Elderly, which provides support for victims of trauma and financial abuse. She is also one of a handful of ombudsmen in Philadelphia. “Usually, the cause for rehab is an accident of some sort, a fall, surgery like a knee or hip replacement. People are coming into the system in panic mode.”

Some facilities have made knee and hip replacement their specialty – a niche practice that allows them to focus on Medicare-reimbursed rehab residents and deters Medicaid recipients from seeking admissions. The problem for residents occurs when they are ready to go home.

“If there is a good discharge plan with services in place at home,” Diane Menio, the executive director of Carie, said, “then the likelihood of their being readmitted to the hospital is reduced. The problem is that the responsibility [for a discharge plan] falls squarely on the nursing home.” Which means they don’t always happen. So when a resident is served with a discharge notice, they are already panicked, they may not have advocates, and the very people they must appeal to for their rights are the ones providing their physical care.

The discharge notice includes a list of residents’ rights and contact information for the local ombudsman. Residents can appeal the eviction and apply for Medicaid, but the process is complex. “It is not set up for laypeople,” Menio said.

In their many years as advocates and ombudsmen, Menio and Walsh have accumulated harrowing stories, many involving residents released to homeless shelters or hotel rooms. The best advice Menio and Walsh have for residents who are facing eviction is to stay in your bed, then call your ombudsmen.

“The whole system is set up so that even the reasonably good people end up behaving in non-optimal ways,” Carlson said. “They’re short staffing, they’re not providing rehab, they’re treating the Medicaid people like trash.”

Change won’t come soon enough. Of the 10 largest US cities, Philadelphia has the highest percentage of elders living in poverty. According to 2018 data from the Philadelphia Corporation for Aging, nearly half of the city’s elders earn less than $24,000 a year. Age and poverty are only compounded when they intersect with other demographics, such as race and sexual orientation (the city is home more than 150,000 LGBTQ+ elders). And the trend lines show that those numbers will only increase.

Thomas Friend Jr died at Vitas hospice on the afternoon of 22 February, his parents and siblings at his bedside. This was not the death they had wanted for him, his last months unsettled by continuous moves from one facility to another.

“I kept telling them: ‘He’s the patient.’ They just kept acting like: ‘It’s our way or the highway,’” Rafiyq told me. We were speaking on the phone, a week after his brother’s death. The family had been through hell, coordinating to prevent Thomas from experiencing loneliness or neglect during the long course of his illness.

“Some nights I was afraid to leave him alone,” Rafiyq said solemnly.

Thomas’s family buried him in the Friends Southwestern Burial Ground, a 17-acre Quaker cemetery that dates to the 1860s. It’s a quiet place with lots of trees and low headstones. It’s also near many in the Friend family and the names, Rafiyq acknowledged, gave them a fondness for the place. He also said the family was considered pressing charges against Powerback; a lawyer is reviewing Thomas’s medical records.

“I’m glad he’s gone. I really am,” Rafiyq said. “I believe that there’s a better place, and he was qualified.”

This story was supported by the journalism nonprofit the Economic Hardship Reporting Project