The dice rattle on the table again, and Benjamin remains stuck. He needs to roll a five in order to exit the starting point of his favorite board game, Parcheesi, but it's been about 10 minutes and his game piece hasn't budged.
He shakes his head in disbelief.
"You want to change dice?" laughs his father, John. "Maybe it's bad dice."
Each roll breaks the muffled silence in the hospital cafeteria. A nurse on break glances over from a few tables away. Benjamin's parents, John and Sherry, eat dinner from Tupperware containers — something they've gotten used to recently. Since Benjamin was hospitalized with self-sustained cuts to his abdomen in February, they've come from their home in northwest Spokane to see him every night. They celebrated Easter at a big table in the corner of the cafeteria. They brought in a cake for his birthday. They'll bring in a turkey for Thanksgiving, if they must.
"We kind of consider this our living room," John says. "We're here every day."
Benjamin has been effectively trapped in Providence Sacred Heart Medical Center in Spokane for nearly eight months. He's a 35-year-old who battles severe depression and anxiety due to a missing chromosome, and while his medical problems were solved within days at the hospital, his former supported-living provider was unable to take him back. John and Sherry, who asked to be identified only by first names to protect their son's privacy, aren't able to care for him alone, and with the area losing services, there are no other supported-living programs in the area for Benjamin to go to.
So he languishes in a hospital bed watching TV, unable to leave hospital grounds and waiting for his parents to show up with dinner and a board game.
"I really want to find a new place," Benjamin says.
Benjamin's situation isn't unique. Hospital systems in the Inland Northwest report that hundreds of patients are lingering in hospital beds, sometimes for months or years, despite having no medical need to be there. With a lack of services for people with disabilities, behavioral health issues and the elderly, many patients cannot be safely discharged from the hospital. Not only can it be traumatic for patients like Benjamin, but it means sometimes hospitals turn away those who need immediate care.
"There are times when we don't have a bed to admit an acute medical patient due to the occupancy of non-medical patients who continue here," says Peg Currie, chief operating officer for Providence.
Currie says that on any given day around 100 of the 700 patients between Sacred Heart and Holy Family hospitals in Spokane are simply waiting for a long-term placement. It's an issue that she says has been "accelerating upwards" in recent years with more behavioral health diagnoses and lacking resources. And patients with developmental disabilities, in particular, have lost options for placements outside of the hospital, spurring a lawsuit against the state.
"This is definitely a community, statewide and even national issue before us," Currie says.
STATE RESPONSIBILITY
Benjamin's hospital room is dark when his parents arrive for their daily visit on a recent Monday evening. It has a TV, its own bathroom and a view of a parking garage. The nurses outside playfully tease him about him always winning at Parcheesi.
Still, he's unable to do the things he wants to do, like play basketball and soccer and the Special Olympics. His mom notes that he needs a haircut and his teeth cleaned. Being stranded here makes his anxiety and depression worse. Most of the other patients on his floor are in a similar situation, the family says, waiting for a place to go outside of the hospital.
In the last year, there have been dozens of other clients of the state's Developmental Disabilities Administration who have been stranded in hospitals. Betty Schwieterman, the Office of Developmental Disabilities Ombuds, says the responsibility falls on DDA to provide the services that these patients are missing.
"I think they have the responsibility," Schwieterman says. "I mean, the Developmental Disabilities Administration exists to provide these services."
To meet that responsibility, the state has its own program for more intensive needs, but many of DDA's clients receive services from private companies that contract with the state. And it's those providers that are in high demand. Without enough of them, people with disabilities are forced to stay hospitalized.
In December, the state's Office of Developmental Disabilities Ombuds released a report called "Stuck in the Hospital" that said the office started getting complaints in spring of 2018. Some of the people had been receiving residential services, went to the hospital but had their residential provider drop them from their care while they were there. In other cases, the providers simply dropped off a person with a disability at the hospital.
Schwieterman says the problem hasn't gotten any better since that report was released. At any given time, her office is working with 10-20 people unable to be discharged from the hospital, many of whom have been there for months. And those long hospital stays have contributed to declining mental health of DDA clients, she says.
"We still receive referrals from people stuck in the hospital every week," she says. "It's not a problem that has improved, that we can see."
That's despite a lawsuit filed this year against the state Department of Social and Health Services and the Health Care Authority aimed at reducing long hospital stays for DDA clients. The lawsuit claims the state failed to ensure services were available when a man was stuck at Harborview Medical Center for eight months, violating federal law. Disability Rights Washington joined onto the lawsuit on behalf of other people with developmental and intellectual disabilities with similar stories.
The state can't comment on the pending litigation. But Lisa Copeland, a spokeswoman for DDA, acknowledges that this is a major issue generally.
"It's our belief that if one person is in the hospital ready to be discharged, then that's one person too many," Copeland says.
But the state's relationship with contracted providers isn't always reliable. A year ago, the state revoked the license of one such provider called SL Start due to issues with abuse, neglect and mismanagement. Many of those clients ended up with a sister company, Aacres. Then, earlier this year, the state terminated its contract with Aacres Spokane due to a litany of problems, including the death of a 64-year-old disabled woman who was killed when she drank a jug of cleaning vinegar mistakenly given to her by Aacres staff. The state's decision to cut ties meant, again, roughly 120 clients had to find a new provider. Some of them, Schwieterman says, ended up stuck at the hospital.
That is the state's dilemma. It can't keep a contract with a provider abusing clients. But when it cuts ties with the company, then a system already lacking in resources only gets worse.
Copeland points out that there's a 50 percent turnover rate among providers, causing instability for clients who constantly have different caregivers. She notes that beginning in January, the state's new budget will fund a 13.5 percent rate increase for community residential service providers, which could provide some stability. That should help, Schwieterman says, as would more diversion beds.
Still, Andrew Biviano, the attorney representing Benjamin's family, says the state needs to recognize its duty.
"They can't rely on providers who can pick and choose who they want to serve. If they can't find a private provider, they should provide those services directly," Biviano says. "They can't claim that they're powerless."
A COMMUNITY CHALLENGE
While there's been a significant increase lately in patients with developmental disabilities staying at the hospital for long periods, DDA clients make up a relatively small portion of people stranded at the hospital.
Local hospitals, including Providence Sacred Heart, MultiCare Deaconess and Kootenai Health, say a majority of their long-term patients are older adults with dementia or Alzheimers. Others are people with behavioral health conditions requiring in-home support.
Yet no matter what barriers they face in getting out, the underlying issues remain the same: A lack of community resources able, or willing, to help them.
"It's not the right thing for patients, it's not the way the system should work, and it's a burden for our members," says Zosia Stanley, associate general counsel for the Washington State Hospital Association.
Hospitals, Stanley notes, are the "most expensive health care settings we have." And if a patient is stuck there, there is often no payment to the hospital. One patient in a hospital bed can cost $1,000 per day. Last year, the Hospital Association surveyed 11 hospitals in the Puget Sound region and found that 1,441 patients stayed at the hospital longer than needed, accounting for more than 97,000 "avoidable days." Currie, with Providence, says long length-of-stay patients accounted for 11,000 days in 2018 at its Spokane hospitals, costing about $12 million in uncompensated care. Those costs then drive up the cost of health care for everyone.
Kootenai Health, meanwhile, couldn't provide exact numbers, but Chief Physician Executive Dr. Karen Cabell says they're experiencing the same challenges, especially as the community grows. She says some patients have been stuck at the hospital for over a year.
Local hospitals say their staff have plans in place to appropriately care for those battling behavioral health issues. Still, Cabell admits it can be difficult for some in the hospital who work there to care for patients with acute needs.
"It's very difficult on the caregivers to basically be providing custodial care for these patients for long periods of time," Cabell says.
Whether it's people with a developmental disability or adults with dementia — the vast majority of long-term patients at Kootenai — it's not just a lack of resources preventing them from transitioning from the hospital. It's providers who don't want to risk taking on a patient exhibiting difficult behaviors. Dr. Michael Meza, a family practice physician in North Idaho who supports older adults needing long-term care, says nursing homes may worry about accepting someone with dementia. Depending on the person, it could put the facility at higher risk of being dinged by state regulators and hurt their star rating from the Centers for Medicare and Medicaid Services. These facilities, Meza says, don't have to take a patient. And often, they won't.
Meza says more constructive state regulation, the kind that educates more than it sanctions, could help. Other solutions aren't too difficult to identify: Hospital leaders say there needs to be more facilities, more behavioral health beds, more outpatient services. And the hospital systems do what they can to address it by adding behavioral health beds and other inpatient or outpatient programs. But that only begins to address the issue.
"It's a bigger problem than just a hospital problem," says Laureen Driscoll, president of Multicare Deaconess Hospital. "It really is a community challenge."
CHANGE COMING
At the table in the cafeteria, Benjamin has finally rolled a five. He's moving around the board, strategically knocking his parents' game pieces back with each roll. The game is good for him, Sherry says. It gets his mind going. It's a sort of mental escape.
There's some hope that he'll soon be able to get out of the hospital, eight months since he got here. And there's some hope that other patients like him will find a place to go to as well. Schwieterman, the DD ombuds, says there are multiple agencies coming to Spokane soon that are certified for supported-living services by DDA: Alpha Supported Living Services, Hope Human Services and ResCare. Still, changes may be coming to the state level.
Rep. Marcus Riccelli (D-Spokane) recently visited Sacred Heart and visited patients who'd been unable to leave. The solutions, he says, come down to investing in infrastructure and the workforce, including higher pay rates for providers.
"We shouldn't be housing folks in hospitals for long periods of time. I think everybody can agree we have to come up with better solutions," Riccelli says. "The long-term savings would be huge, and it's clear that there's too many people spending too long in hospitals."
For Benjamin and his family, however, the changes couldn't come soon enough. Any day needlessly spent in the hospital is a day too long. Sherry hopes people who have a say are listening.
"If they spent time in a hospital room, even a week having to live like Benjamin does, I think changes would be made," Sherry says. "They would find a way." ♦
