Editor’s note: This story focuses on suicide, self harm and other topics related to psychiatric distress. If you or a loved one is in crisis, resources are available here.
Two dates are written inside a notebook Lisa Tonseth keeps close at hand. Aug. 5, 2021: the day after her 16-year-old son Dylan was first brought to the hospital’s emergency department during a psychiatric crisis. Then, 33 days later, Sept. 7. The day Dylan finally got out.
For more than a month inside Sacred Heart Children’s emergency department in Spokane, Dylan’s world was confined to a small windowless room lit only by the unnatural glow of fluorescent light. Going outdoors for fresh air or exercise wasn’t allowed. Lisa brought him art supplies and he watched TV. But he was so lonely that sometimes he’d ask if a hospital security guard would come by to chat.
To pacify Dylan, who has autism, ADHD, depression, psychosis and low intellectual ability, staff served him chocolate milk.
His treatment was limited to antipsychotics and other medications, his parents say. Boredom eventually turned to aggression. Most days, his parents say, medical staff were forced to tie Dylan to a gurney, or call security for help. He tried to wrestle away a guard’s Taser. And Dylan attempted several times to escape, once making it as far as the parking lot before a guard hauled him back.
“He would scream and say he wanted out of there,” said Mike Tonseth, Dylan’s father. “He had less opportunity than a person who is incarcerated.”
There’s a technical term for when someone like Dylan finds themselves living inside a hospital emergency department: Psychiatric boarding. Then there’s the word Dylan’s mother uses: warehousing.
Hundreds, if not thousands, of kids across Washington have been “boarded” inside emergency departments in recent years, because the hospital has determined they need to be admitted for psychiatric care but no mental health beds are available. No one interviewed for this story supports boarding. Instead, it’s widely viewed as a grim reality. And the problem, which existed before the pandemic, is only getting worse.
Children are kept in the emergency department — or a medical unit — because they’re unsafe outside it. They might be suicidal, homicidal or in desperate need of care for hallucinations or psychosis. For Dylan, voices told him to kill himself and his parents, and in 2020, he attempted to burn down the family’s home.
But ERs are often ill-equipped to treat children with significant long-term mental health concerns. They’re noisy, chaotic and cold. ER staff are trained to stabilize patients in crisis, but often don’t know how, or don’t have the time or space, to treat complex diagnoses like Dylan’s, leaving children at risk of suicide stranded for days or weeks without proper psychiatric care. Emergency departments are outfitted with all sorts of medical equipment like needles and scissors that could be used to self-harm — not stripped to the essentials, as happens in psychiatric wards.
Using restraints or medications are sometimes medical staff’s only options to keep violent outbursts at bay, since ERs don’t always have seclusion rooms for kids to cool down. And they’re sometimes over capacity: Seattle Children’s ER has been so full, several staff said, that they’ve been forced to set up beds for boarders in a hospital office space.
“It’s so wildly inappropriate to board patients that are struggling with mental health, in a windowless room, without access to regular exercise or outdoor time. All the things we know could help children with behavioral problems,” said Dr. Breanna Barger-Kamate, an emergency room doctor at Sacred Heart who worked with the Tonseth family.
Youth like Dylan are in emergency departments instead of receiving the specialized, therapeutic care they need because the mental health care system is splintered from top to bottom, hospital workers say. Washington has historically ranked among the states with the highest rates of mental illness and worst access to mental health care. A lack of outpatient services means children often don’t get early interventions when they start having psychiatric symptoms. And there are only 94 long-term pediatric inpatient beds available to serve the state’s 1.1 million children.
On any given day, an average of 33 Washington children are in emergency departments, hotels or acute care units waiting for a long-term bed, according to records from the State Health Care Authority that urge officials to invest more in inpatient beds; wait times range from one to four months and the cost of boarding or waiting elsewhere is estimated to exceed $20 million annually. “We’re a stopgap in a broken system,” said Dr. Tony Woodward, medical director of the emergency department at Seattle Children’s.
The result is a shadowy form of isolation that keeps children in hospitals without treatment. One deemed so abhorrent it was made illegal for adults.
Washington has long lacked enough inpatient beds to meet the state’s need, but in 2014, the state Supreme Court ruled that detaining adults in hospital rooms without psychiatric treatment went against citizens’ rights. The ruling spurred the state to almost immediately invest $30 million in new adult psychiatric beds. But the ruling seemingly left room for hospitals to continue boarding children.
It’s difficult to estimate how many Washington children board each year since hospitals don’t uniformly keep records on such patients. But a November study in the Journal of the American Medical Association (JAMA) suggests that compared to before the pandemic, 84% of hospitals are boarding more youth patients, and 75% are reporting longer boarding stays. Eleven physicians, social workers and nurses across all three of Washington’s children’s hospitals — Sacred Heart, Seattle Children’s and Mary Bridge in Tacoma — told The Seattle Times in interviews that boarding has reached crisis level during the pandemic.
Indeed, Gov. Jay Inslee declared a youth mental health crisis in March 2021, citing available data from these hospitals and others that illustrated a dire spike in suicidal behaviors and boarding.
“We first saw this trend emerge in September 2020,” Sarah Rafton, who is executive director of the Washington Chapter of the American Academy of Pediatrics and compiled the data for Inslee’s office, wrote in a March 2021 email. “I am sick about it that so much time has elapsed and we are seeing children and adolescents decompensate to the point of needing hospitalizations and ICU care in these increasing numbers.”
Kathryn Leathers, general counsel for Inslee’s office, responded: “It is heartbreaking and terrifying.”
As of August, Barger-Kamate said 300 children had boarded by that point in 2021, and collectively lived 971 days inside Sacred Heart’s emergency department. It used to be rare for a child with behavioral concerns to stay two, or even three days in the ER, said Dr. Michael Barsotti, chief administrative officer at Sacred Heart Children’s. But in January 2021, one child boarded for 24 days. In February, 22. Same with March. In both April and June, the longest boarders lived in the emergency department for 29 days.
Youth like Dylan, who have developmental disabilities in addition to mental health needs, are among the hardest to place in inpatient care, several health care workers say. Children 12 and younger are hard to place, too; some as young as 7 have spent 10 or more days in Sacred Heart’s ER, Barger-Kamate said.
“The most challenging patients,” she said, “(who) are going to be most agitated in an ER unit and the least able to cope with boarding, are the ones that end up boarding.”
“Why am I still here?”
While boarding is often thought of as “something that is temporary,” a recent study shows it’s a “systemic and national problem,” said lead researcher Dr. JoAnna Leyenaar, associate professor of pediatrics at Geisel School of Medicine at Dartmouth, in New Hampshire.
In the November study in JAMA, the first of its kind to examine pediatric boarding on a national level, she and her colleagues found that all but one of the 88 children’s and community hospitals they surveyed reported that children were boarding and awaiting inpatient psychiatric care during the pandemic.
Children waited an average of 48 hours before they were transferred to an inpatient bed, more than 10 times the recommended length of stay in an emergency department.
Unfortunately, there’s still a major gap in researchers’ empirical understanding of how boarding affects children psychologically, Leyenaar said. But there’s a large body of research that points to how stress affects the brain, including negative consequences on memory, cognition and mood. And countless studies suggest social isolation is tied to suicide, high blood pressure and premature death.
The handful of small studies on boarding youth that do exist suggest these children experience a range of emotions during long stays in the emergency department. In a 2019 study, some youth described feeling safe and grateful to hospital staff, with one participant saying, “The second the [psychiatric technician] walked in, they cracked me up. They really honestly made my day so much better.”
But others were scared and overwhelmed. “I know I can’t really get up and then just walk around. And I started thinking that I don’t want to be here then I just get upset,” one participant said.
And another: “What’s taking so long to find me a bed? Why am I still here?”
In Washington, finding a bed is reliant on slow and outdated systems of communication, like fax machines.
Following Inslee’s youth mental health crisis proclamation, the state’s Department of Health commissioned a report where hospitals described a chaotic, inefficient workflow that involves cold-calling each of the state’s inpatient units every time they look for an available bed. Hospitals then fax the child’s medical information and wait for a response. If no bed is available, the child boards in the ER.
The September 2021 report points to a software solution called Open Beds, which is built to streamline referrals and share real-time data on bed availability. But, according to the report, the tool is “not currently online in Washington State.”
The strain on hospitals and inpatient facilities has been made worse amid the recent closure of residential treatment options at Ryther in Seattle and Navos in Burien, the report suggests.
So, the kids stay stuck.
The ER’s relative safety stretches resources. At Sacred Heart, kids living in the ER are occupying a room that typically would be used to serve about nine kids each day. Some nights, the waiting room at Sacred Heart is so full that families wait hours before they’re called in, said Dr. Barger-Kamate.
The hospital is responding by hiring people whose primary job is to entertain and keep watch on children who are boarding, she said.
Staff who work in Washington’s children’s hospitals described their emergency departments as having a duty — but lacking expertise — to adequately care for kids with psychiatric conditions. Turnover is high, as emergency department staff get burned out. Julie Johnson, social work manager at Mary Bridge, said when a child might benefit from taking an antipsychotic or other medication, staff sometimes consult over the phone or video with telepsychiatrists who live across the country, since there’s such a big shortage of psychiatrists in Washington.
Two emergency department staff at Seattle Children’s, who are not being named because they feared retaliation or their jobs were at risk by speaking to the press, said that the kids have no routine, no scheduled activities. On a calm day, a nurse might pop in and play a game of cards. But constant shift changes mean children frequently have to reorient as new faces come to their bedside. The hospital was supposed to build a shower inside the emergency department but hasn’t, so boarding children sometimes go a couple of days without the ability to bathe, the employees said.
One of the Seattle Children’s employees, who is part of an emergency department team that evaluates children in mental health crises, said oftentimes the hospital boards children out of compassion for families who don’t have the resources or ability to care for their kids. But if he knows a child might board for multiple days, and isn’t at imminent risk of hurting themselves, he feels compelled to discharge them.
“If they are just going to sit by themselves in the ED with not much interaction for three or four days, that just feels wrong,” the employee said. “Just boarding in an ED could make you sicker.”
Dr. Ravi Ramasamy, a psychiatrist who works at Seattle Children’s inpatient psychiatric unit, said he’s noticed that patients who eventually get admitted from the ER to his unit are less patient and want to go home sooner than kids who don’t wait days in the ER.
“By the time they get up to the unit they may be less invested in treatment and less hopeful about whether it will help them,” he said, “regardless of what state of mind they came in with to start.”
The Loop
Dylan’s parents wonder sometimes what it would have been like had Dylan received the right treatment when he was young.
Mike and Lisa Tonseth adopted Dylan when he was born in 2005 and raised him and their older daughter in an airy rambler just north of Cashmere, Chelan County. The green roofs of neighboring homes, and a narrow road that snakes through the snowy valley, are just visible from the family home. On a day in late January, the sky was the kind of faded white that doesn’t distinguish between morning and afternoon. Wild turkeys roamed.
The couple moved here from Wenatchee before Dylan was born, wanting a reprieve from the city to raise a family. Mule deer and bison skulls taken by Mike, a Department of Fish & Wildlife biologist, adorn the family room and kitchen. But bucolic life, 30 minutes from the nearest hospitals, had unforeseen consequences.
What was Dylan like as a boy? The Tonseths recite Dylan’s behaviors like they’re ticking off boxes for all the classic traits of his eventual diagnoses. As a toddler, he avoided eye contact, had delayed speech and fixated on specific toys — all typical traits of autism. As he grew up, loud noises and rides on the school bus wound him up. He was anxious, impulsive, and eventually, physically aggressive. They suspected he might have autism. But there were no developmental specialists in the area.
He’ll grow out of it, their pediatrician said.
Around age 10 or 11, a new physician diagnosed Dylan with autism and fetal alcohol spectrum disorder. “Her comments to us were, why was he not diagnosed earlier with these conditions, particularly autism?” Lisa said. “Early intervention for these things is critical.”
When he’s able to focus, Dylan is polite, generous and makes silly jokes. He likes to sketch and write stories. But he has trouble reading social cues and was bullied in middle school. A doctor prescribed him Ritalin for ADHD. But because of where the Tonseths live, Dylan still didn’t have access to the recommended therapy for autism. And though he eventually was put on a waitlist, his parents say they couldn’t afford the $14,000-year out-of-pocket cost.
In 8th grade, his parents noticed a change in Dylan’s face, his gait, his mood. In a photo at 12, the boy with dark blond hair squints as he smiles broadly. But by 14, Dylan is hollow-eyed, staring blankly at the camera. Before the pandemic, he’d started hearing voices and seeing things that weren’t there. Dylan made threats to kill himself and his sister. His parents brought him to Central Washington Hospital, but several times he was sent home because he was deemed to no longer be in crisis.
They grew tired of the loop: crisis, ER, return home with no new tools or resources.
A couple of weeks after the pandemic shut down schools, Dylan lit a fire in the family’s basement. Over the next year and a half, Dylan was in and out of the ER and inpatient care, eventually landing a long-term inpatient bed at a Yakima facility called Two Rivers Landing. There, he started using words more frequently to express his emotions and needs.
But after a 13-month stay, Dylan was discharged in June 2021 against his parents’ better judgment. Email correspondence from the family shows they and state Developmental Disability Administration officials had raced to put together a patchwork of care options as Dylan’s discharge date approached, but his parents ultimately felt the options offered didn’t provide enough monitoring to keep Dylan safe.
When they didn’t pick him up, they discovered the facility had called the police to bring Dylan to an ER in Yakima.
With the help of a government case manager they worked furiously to find Dylan another bed at a group home in Spokane. Dylan had his own room, he’d started to get set up with doctor’s and dentist appointments, and he went on outings with the home’s staff and other residents. But a month in, his suicidal and homicidal thoughts came back, and he became violent. Police were called, and on Aug. 4, the day before the first date Lisa jotted down in her notebook, emergency services took Dylan to the ER at Sacred Heart.
In a 2020 neuropsychological report, a clinical psychologist had diagnosed Dylan with PTSD, autism, major depressive disorder with psychotic features, and intellectual disability. The psychologist also described Dylan as being aware of his angry, violent behavior. This awareness only fuels more anxiety, trauma and worse outbursts. In the Sacred Heart emergency room, though, physicians kept telling the Tonseths that Dylan didn’t meet criteria for admittance into their acute inpatient psychiatric unit. Dylan was experiencing behavioral concerns, they said, that they weren’t suited to treat. So there’s no possible way that home would work? staff asked. Absolutely not, the Tonseths said.
At home, alarms are still attached to the door and window in Dylan’s room, safety precautions from when he was prone to running away and having violent fits. Aside from his twin bed, the space is mostly empty. Dylan’s belongings are boxed in his closet, waiting for a more permanent home. “Thinking about being a mom, thinking about my little boy suffering, it’s definitely hard,” said Lisa, who works in special education. “But I know I can’t provide the safety that he needs.”
Steep cost
This legislative session, Inslee wants to inject $30 million — including $15 million in federal dollars — to fund an additional 42 Children’s Long-term Inpatient Program beds, known as CLIP, which is the most intensive inpatient service available to children and involves lengthy residential stays. Lawmakers are also floating several policy fixes, including a measure that would improve access to intensive outpatient programs for low-income families. The package of proposals represents a “pretty significant” investment compared to recent years, said Amber Leaders, senior policy adviser on behavioral health, aging and disability in the governor’s office.
But several experts interviewed for this story, including Leaders, said Washington has historically underinvested in pediatric mental health care.
The medical system has little financial incentive to build more inpatient psychiatric beds, said Barsotti, the Sacred Heart Children’s administrator. Mental health care, he said, is a money-losing proposition. Medicine is reimbursed based on procedures patients undergo, he pointed out, and with mental health “there are no procedures.” “There are a lot of hospitals in the state, Seattle Children’s, Sacred Heart, Mary Bridge, who do this work because they know it’s the right thing to do and they will eat the cost of part of it … but you can’t bleed your entire resources out on one service.”
According to a state estimate, one day of boarding costs $1,670. But at Seattle Children’s, the hospital is only able to bill insurance for the equivalent of a single visit to the ER, said Woodward, the head of Seattle Children’s ER, no matter how long the child stays. “It really costs the hospital a lot,” he said. “But I think more than finance, it’s about the service provided to the other patients.”
Children who are boarding largely exist in a legal gray area, and a fix isn’t straightforward.
The principles of the 2014 Supreme Court ruling on adults should also protect youth who are involuntarily committed, said Jeff Sconyers, former senior vice president and general counsel at Seattle Children’s who now teaches at the University of Washington School of Public Health. But most children in need of inpatient beds aren’t involuntarily committed — parents or caregivers have rights over their care and can seek treatment without involving the courts.
Other state laws offer protections for inpatient children, but kids who are boarding usually aren’t considered inpatients. “They ought to be getting care and, probably, there’s a legal right to it,” Sconyers said. That question hasn’t been litigated, however.
In September, Dylan’s luck improved after Barger-Kamate took matters into her own hands. “The reason we got him eventually out of the ER is because I essentially begged the hospital to do so,” she said.
Finally, after more than a month, Dylan was headed upstairs to an inpatient bed.
Dylan’s new room has a window. He has a team of psychiatric staff overseeing his medications. And when he gets upset, trained staff calm him down. But his behavior is volatile and they’re often forced to restrain him; Dylan has punched at least one staff member and threatened to hurt others, offenses that come with time spent in a locked, secluded room. He’s receiving limited therapy, and as a side effect of his medications, his eating habits and inability to exercise, is now 253 pounds, up from 130 pounds in 2019.
Dylan’s family says they’re not equipped to bring him home, and state agencies have tried and failed to find a long-term bed for him out of state. Other forces are now pushing to get Dylan out of the hospital: Sacred Heart has hired attorneys, the Tonseths said, who are pressuring the state to find an alternative. One option, a state-operated supported living program is supposed to become available in April. But it’s not clear where Dylan would go in the meantime.
For now, Dylan’s good days are becoming more common.
On a recent visit, in early December, Dylan showed Mike and Lisa drawings he’d made and introduced them to staff on the unit. They listened to music. He told them he’s homesick.
“I was having such a good time I felt like I wanted to stay a little longer because we don’t get to see him very often,” Lisa said. “There’s that sorrow of, you walk off, and the reality of the situation hits you.”