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In Nursing Care, Advocates Say Services For Long-Term Patients Falls Short

As California ages, the demand for nursing home beds is exceeding the supply. Advocates say it is especially difficult for seniors who need long-term care because our health care system incentivizes providers to favor short-term patients.

Our stories are made to be heard. Click the audio player to listen if you can.

Antoinette Malveaux sings with her mother, trying to get her to sing along, to help her relearn to speak after a stroke. Proteone Marie Malveaux is living at home in the house she owns in San Francisco.

Antoinette travels to San Francisco from Seattle every few weeks to do her part. Marianne lives at the house with her mother full time. Two other sisters and a cousin travel from as nearby as Oakland and as far away as D.C. to do their part. When they can’t all be in the same place, they all dial into a conference call they’ve set up to organize their mom’s care.

Marie Malveaux was in a nursing home. The best one in the region, according to its reputation: The San Francisco Campus for Jewish Living, formerly the Jewish Home. She was discharged there from a hospital after suffering a stroke at 91. This – coming from a hospital – is how a lot of patients first arrive at a nursing home. The therapy was going well, Marianne says, but it could take a long time, or a lot of persuading, to get help from understaffed nurses.

“When you hit the bell, it rings at a nursing station and keeps ringing until somebody comes into the room and turns it off. And it was their main focus to turn it off as soon as they go into that room. Regardless of whether or not they were going to help you,” Marianne Malveaux says.

Marie Malveaux also suffered a fall while she was at the campus, bruising her right side, hitting her head, and setting her progress back, her family tells me. That meant she was recovering from a stroke and an injury. From early on, according to Antoinette Malveaux, she was being pressured to leave. Even if her condition wasn’t improving.

“So we're asking, well how do you make the decisions about whether or not she's ready. And so we start hearing the language: Well it depends on her progress it depends on how much assistance she needs. It depends on if she's plateauing,” Antoinette Malveaux says.

The Malveaux daughters say patients are categorized as “moderate” or “maximum” assist depending on their needs.

“She was a maximum assist, because she needed two people to get her out to get her on the commode to get her out of bed get her dressed,” she says, “And so their expectation was, if she didn't move beyond maximum assist in the 21 days, she was going home.”

They also felt that this pressure was being exerted because of the kind of insurance they had, and how much the nursing home would be reimbursed by that insurer – even though, Antoinette Malveaux says, the family had calculated that they could afford the co-pays for about 100 days of care. Marie Malveaux does have long-term care insurance, but when we spoke the family was in a holding pattern while a mandatory waiting period expired. And it wasn’t covering the nursing homestay. 

“So, in our mind, we're focusing on care[...] I'm thinking okay, two, three, weeks, my mom's going home, and she's going to be a whole lot better,” Antoinette Malveaux says. “Turns out, two to three weeks is the process and the determination around cost.” 

It seemed to the family like the nursing home staff was following a formula.

“And so they say that well if she can't make enough progress to get to the next level then our determination that she is not going to benefit from more therapy which is bad is totally backward,” Malveaux says.

Advocates say nursing homes don’t like to take too many long-term patients because the state’s insurance that covers short-term stays pays far more than the one that covers long-term stays. 

I spoke with Terry Palmer, a retired geriatric doctor whose mother lives in a long-term room at the Jewish Home, where she’s very happy. Terry Palmer is also a local activist in elder and long-term care.

“One of the problems in San Francisco and actually all over the state is [...] nursing homes are happy to take you to rehab you from a hospital because that six weeks to three months is paid for by Medicare, which is a higher level of reimbursement,” she says. “But then when they just need to take care of you long term – it's called custodial long term care – that's Medi-Cal now, and it's a much lower level of reimbursement. And so they will try everything to get people home, or to get people out.”

Nursing Homes Face A Balancing Act

The San Francisco Campus for Jewish Living, where the elder Malveaux had been staying, says they can’t comment on specific cases. But they did make their CEO and president available to talk more generally about how the facility operates. His name is Daniel Ruth. 

We met in his office, where he keeps an “instant audience” noisemaker that he jokes about using on his staff.

“Usually, they are deserving beyond any measure of applause,” he tells me, playing the applause sound.

Ruth was straightforward about the balance nursing home operators need to strike between short-term and long-term care. 

Remember, Medi-Cal covers long-term care in California. In order to qualify, you need to have very little in the way of assets and income. Medi-Cal pays far less to the provider than either private insurance or MediCARE, which generally don’t cover long-term stays. So providers are trying to move away from long-term care, Ruth says.

“They don't want to take Medicaid or Medi-Cal residents. They would rather just provide post-acute, which is higher reimbursement,” he says.

Financially, he says, that works better for the provider.

“It's very difficult to have a truly viable operation that is primarily based on Medi-Cal payments. So it's tough,” he says.

Ruth also says he knows families might object to how their loved one’s needs are evaluated. 

“You can imagine that, from time to time, residents of families don't agree that it's time,” he says. “And there is a process whereby they can have their case heard.”

But he insisted that the facility doesn’t just boot people.

“We work with the family we try not to just – ‘Oh, Mom's being discharged at 3 o'clock today.’ We don't operate that way,” he says.

The standards for evaluating patients can be tough for everyone. Liz Halifax is a gerontological nurse researcher at the University of California, San Francisco. She’s worked in nursing her whole life, originally in the UK. These days, she’s also a volunteer with the long-term care ombudsman program in San Francisco. 

“Quite often I get people saying to me, you know, they've stopped my physical therapy and I don't understand why and that is often because maybe they've enjoyed the physical therapy but because they're no longer making progress in terms of healing or improving it gets discontinued,” she tells me. “And so, you know, having to explain that to people is very harsh at times.”

But one memory, in particular, stands out to her about how the kind of insurance a patient has can influence the care they get.

“When I very first moved here, and I took a job in a nursing home, I do remember when it really occurred to me that things were very very different here from Britain, where I was used to the National Healthcare System,” she says. 

The moment Halifax remembers involved a visit to a room in the nursing facility with two women of a similar age with similar leg wounds. She says one was receiving an innovative, but expensive, new treatment.

“And I remember just talking to the physician and suggesting that as we were having such good success with the new treatment in the first person, that maybe we could use it for the second woman too,” she recalls. “But he pointed out that she was Medi-Cal coverage, not Medicare covered, and that there was no way to cover the cost of this treatment for her.” 

To her, it’s not right that the insurer someone has could result in a disparity in their care.

“I mean, not only did it strike me as being completely unethical, but it struck me that it really is all about the money. It's about how your care is financed,” Halifax says.

Advocates say, because of the pay disparity, even getting a place at a nursing facility at all is harder for long-term patients on Medi-Cal.

The California Association of Health Facilities represents nursing facilities in the state. I spoke with the association’s DeAnn Walters. When it comes to finding a bed, she says, more people transition from short- to long-term care, rather than coming straight from home. And facilities often have more beds for long-term than short-term patients, but turnover is low with long-term patients. 

“Sometimes it is full because when people come and stay long-term, it is long-term. They could be there for years under the care of the facility,” Walters says. “And so then you just don't have as many openings, and so there are times when that may take a little bit longer to transition than we would like.”

A Changing Landscape Of Financial Models

Nursing homes have slim margins. Walters points out that rather than new facilities being added, California is actually losing facilities. That said, they can make a profit – in fact, a report by two UCSF researchers showed that in 2015, more than 80 percent of nursing homes in California were run by for-profit facilities. And the majority of their patients are covered by public insurance programs, Medi-Cal and Medicare. 

I asked DeAnn Walters with California Association of Health Facilities how, given all the factors that constrain revenues in the industry, a private nursing home makes money.

“It takes really good management skills. There's just no other way around it,” she says.

That includes getting the best rates with contractors, paying staff a good wage to keep turnover low, while also not over-spending relative to revenue, Walters tells me.

“And I imagine that it is both very difficult for profit and for not for profit facilities to manage that,” she says.

From one nonprofit nursing home provider’s perspective, though, a for-profit model limits what a nursing home can offer to do. Daniel Ruth, the CEO of the non-profit San Francisco Campus for Jewish Living, tells me about a time when his facility was able to take on a charity case: A resident who had been there for two years lost her Medi-Cal eligibility after a government rule change. He says all she had left was Social Security – and what she could collect from that per month was close to the cost of staying at the nursing home per day. 

“She did extremely well here. She created a whole new sense of community,” Ruth says. “Our community, philanthropic, the board and otherwise, made the decision that we would eat the financial impact of her coming off Medi-Cal and being purely on SSI, because there was nowhere for her to go and she was thriving. Why? Because of the support systems and the care that was being provided here. And we weren't just going to say, ‘see ya.’”

That kind of decision, Ruth speculates, probably wouldn’t make it into the calculus of a for-profit model.

“It seems to me that if they want to, they're motivated by their bottom line whereas nonprofits [...] we have a dual bottom line,” he says. “We're motivated by providing a level of care and service that we would want for our own loved ones.”

But this is the kind of dedication to helping a patient thrive that the family of Marie Malveaux never felt they received. They could have afforded the cost of care for their mother for about twice as long as she was able to stay, but felt her needs and progress were brushed aside. 

Instead, Antoinette Malveaux told me, it was determined that her mother wasn’t making progress, and she was sent home. Even making sure she stayed for the time she did was a battle.

“I tell my boss this has been the hardest thing I have ever fought. I've never fought for anything harder in my life. And but it's the right fight,” Malveaux says. “But it shouldn't be this hard. It really should not be this hard. And the sector is not about care. It's about cost. And we came to learn that.”

It was a fight the family carried out in part because their mother had been such a proud advocate – she herself was a social worker in geriatric care and a staunch advocate for the vulnerable. But now she can’t speak for herself, so her family stepped in to be her voice. 

This story was produced as part of the USC Center for Health Journalism’s California Fellowship.