For pediatric mental health patients, days stuck in the ER
COVID has made worse a long-standing crisis in child psychiatric care
JILL CUMMINGS’ SON is a smart, loving 13-year-old with serious impulse control problems and mental health diagnoses that include ADHD and oppositional defiant disorder.
The West Boylston teen, who is not being named to protect his privacy, lives in a residential special educational school – an environment in which he often becomes destructive, pulling fire alarms, punching TVs and windows, and getting aggressive with staff. Last month, he punched a window, got stitches, then pulled the stitches out. The school, fearing for his safety, took him to Beth Israel Deaconess Hospital in Needham.
The teenager spent 16 days in the emergency room while hospital and crisis services officials searched for an inpatient psychiatric bed for him, to no avail.
“He’s been sitting in the emergency room watching everything that’s going on,” Cummings said. “No 13-year-old should be watching what’s going on in an emergency room.” Because the boy was well-behaved in the ER, after 16 days, the hospital sent him back to school rather than continue searching for a treatment facility.
“We’d never let a child with diabetes wait for days or weeks without insulin,” said Amanda Stewart, an attending physician in the Boston Children’s Hospital emergency department. “We’d never let a kid with cancer wait days or weeks without chemotherapy.”
Cummings’ son’s experience is so common in the world of mental health care that it has its own name: boarding, which is defined as spending more than 12 hours in an emergency department waiting for an appropriate placement. Sometimes patients can also “board” in medical beds, which means they are moved out of the emergency department into a regular hospital unit while they await a psychiatric bed.
The length of time that children must board means an already difficult situation is made worse for them by the stress and lack of mental health treatment while they are waiting. Families may also hesitate to seek emergency room care, knowing it will result in a long, difficult wait. And if large numbers of psychiatric patients are boarding, it can disrupt hospital operations and result in longer waits for people seeking urgent medical care, if the medical beds are filled with people who are simply waiting for a psychiatric bed to open up.
“The emergency department was never created to care for patients for a long period of time,” said Katie Stuart-Shor, a pediatric nurse practitioner in Boston Children’s Hospital’s emergency department. “The nature of it is it’s busy and it’s loud and there’s lots of activity, and that’s how it was intended to be. And now we just have this paradigm shift where we’re having children stay in a place that was not literally built for people to stay in.”
Boarding has been a problem for years in Massachusetts, for adults and for children, due in large part to financial factors relating to the way the mental health system is structured. But it has skyrocketed over the last year, particularly for kids. A recent Health Policy Commission report found that between March and September 2020, 39 percent of pediatric patients who went to the emergency department for a behavioral health need boarded, compared to 28 percent of adults.
Public health experts say boarding is a symptom of a larger pediatric mental health crisis spurred on by the COVID-19 pandemic and its collateral effects. The shuttering of school buildings and the loss of in-person community mental health services led more children to suffer from acute mental health problems. At the same time, the number of available inpatient psychiatric beds has been reduced.
A LONG-STANDING PROBLEM MADE WORSE
Accessing mental health treatment has long been a challenge. The Blue Cross Blue Shield Foundation has for years chronicled the trouble people have finding an outpatient mental health provider who is accepting new patients, particularly pediatric patients, and who takes their insurance. Many clinicians do not accept insurance, due to low reimbursement rates and administrative complexity. And not all mental health providers can treat children.
If it is hard to access outpatient care, people end up seeking care in the emergency department.
On the inpatient side, low insurance reimbursement rates have historically made it less profitable for hospitals to open psychiatric beds than medical beds. And caring for children can be more staff-intensive than for adults, making those beds even harder to maintain. In addition, low staff salaries have made it hard for facilities to attract and retain workers. That means there is a shortage of beds to accept patients who show up at the emergency room.
“It’s a big bottleneck we’re in middle of,” Stewart said.
As with so many aspects of pandemic life, COVID-19 has only made the existing problems worse.
According to the Executive Office of Health and Human Services, since June 2020, the number of patients boarding in emergency rooms has increased by 200 to 400 percent compared to the same month the previous year. State data finds that for the 3,100 adults who were referred to a psychiatric facility in 2020, the average wait time was 1.5 to 2.2 days, depending on the month. For the 1,200 children under 18, the average wait time was between 2.4 days and 4.5 days. The most common barrier to placement was bed availability.
The Massachusetts Association of Behavioral Health Systems estimates that on any given day, there are 300 to 400 patients boarding, of whom 40 percent are children.
Nancy Scannell of the Massachusetts Society for the Prevention of Cruelty to Children said as the pandemic forced schools to shut down to in-person learning and curtailed home-based services, students who were getting behavioral health services in school or at home lost them. Kids getting outpatient therapy had appointments cancelled. While telehealth and remote learning worked for some children, it did not work for everyone. Health Policy Commission data show that when the health care system shut down to in-person visits in March 2020, one-quarter of pediatric patients who had been getting psychotherapy discontinued care.
“The avenues for getting help were all shut down, so kids were ending up in the emergency room,” Scannell said.
Stewart said kids were also harmed by isolation, loss of routine, and loss of social supports caused by the pandemic, in addition to the stresses of seeing family members getting sick or dying, or losing a job.
The epicenter of the pediatric boarding crisis is Boston Children’s Hospital, because it attracts the most pediatric psychiatric patients. One day in late April, Azubuike reported having 41 children boarding at the hospital, compared to an average of 18 a day in 2019.
From July to October 2020, Children’s Hospital reported 277 youth patients boarding who had suicidal thoughts or had attempted suicide – a 47 percent increase over 2019, according to the hospital. The number of children with an eating disorder – 88 – represented a two-fold increase over the prior year.
Clinicians who work there paint a picture of a system with children in dire need who cannot get those needs met quickly. Stewart, the emergency department physician, said when she started working at the hospital in 2012, if a child with a behavioral health need was in the emergency room for 24 hours, they would be moved to a quieter room on a medical floor. “Now, we routinely have children stay in the emergency department over 100 hours before they get a bed upstairs, some even longer,” Stewart said.
When a child is boarding, they are in a private room in the emergency department, generally with a parent, receiving medical care from emergency room doctors and nurses and being reassessed daily by a psychiatric clinician. But they are not receiving any therapy or treatment for their mental health condition. If a “sitter,” a monitor assigned to them for safety reasons, and an appropriate room becomes available on a medical floor, the child may be moved there. But they still will not receive mental health treatment.
“When they come in, they’re in crisis, and it’s challenging,” Stuart-Shor said. “The waiting is really hard for them. Families are missing work and kids are missing school for these long periods of time.”
One family who suffered from the lack of outpatient care – and the long waits – includes two sisters from eastern Massachusetts. Their mother asked for anonymity to protect the family’s privacy. The younger sister, age 12, was struggling with depression after an unsuccessful surgery left her in chronic pain. After a medication gave her hallucinations, she became overwhelmed. The family tried to find a private therapist, but the clinicians they contacted all had waiting lists and prices of between $250 and $375 a session, and they did not accept insurance. Due to the pandemic, the girl lost her peer group and support system.
When the girl threatened to kill herself, her parents had her admitted to Boston Children’s Hospital. She waited there for two weeks before being admitted to a community-based residential acute treatment facility. She spent those weeks with a parent sitting in a sterile, locked-down room with two gurneys, a monitor watching her constantly, and no psychiatric treatment.
The girl spent time in the treatment facility, but was discharged before she felt ready. Within 24 hours, she told her parents nothing had changed and she still wanted to kill herself. So they readmitted her to Children’s Hospital. This time, she spent 10 days in the emergency room, then around two weeks in a medical bed before she found a psychiatric placement.
The trauma of seeing her struggle affected the girl’s 13-year-old sister, who developed an eating disorder. At one point, both girls landed in Children’s Hospital. For a month, they were boarding at the hospital, with their mother collecting schoolwork from their teachers and bringing it to them. Their mother said hospital staff would not let them speak to each other. (Hospital officials said they are not aware of any policy prohibiting contact between siblings unless there is a legal issue or a reason the communication would worsen their mental health.)
When the hospital moved one of the girls to an inpatient placement in the middle of the night, the mother felt pressured into accepting the placement – even as she protested the timing of the transfer – because it was her only option for her daughter to finally get mental health treatment.
The state Department of Mental Health finally assigned a team to the family seven months after they requested it.
The mother said even though she and her husband both spent their careers working in health care and have extensive contacts within the system, the family found that the mental health system was still an impossible maze to navigate. “You can’t function in the mental health system even if you spent 30 years in the medical system,” she said.
The pandemic also made the situation worse on the inpatient side of the system, with psychiatric beds shutting down. According to the Health Policy Commission, Massachusetts has lost 270 psychiatric beds since 2019. Providence Behavioral Health Hospital in Holyoke closed in 2020. Norwood Hospital closed after flooding in June 2020. Other hospitals reduced capacity to allow space for quarantining and social distancing.
Before the pandemic, Amy Doucette and her 8-year-old daughter Rhaewyn, of Gardner, had a relationship with Hampstead Hospital, a behavioral health facility in New Hampshire. Rhaewyn has autism and hyperactivity disorder and can become aggressive. But with the pandemic, the hospital could no longer accept Rhaewyn across state lines.
So when Rhaewyn was in crisis, Doucette turned to UMass Memorial Health Alliance Hospital in Leominster. While Doucette is no stranger to emergency room waits, she said during the pandemic, “it was a lot worse. There were just people everywhere.” When the hospital was under construction, Rhaewyn was left in a hallway for two or three days before a bed opened up on a unit. Her two hospital waits during the pandemic lasted for a week and almost 10 days.
Doucette said psychiatric facilities did not do intakes on weekends. A mobile crisis service kept failing to send Rhaewyn’s records to the facilities quickly. Doucette said the system is exhausting for parents, who are often expected to remain with their child 24/7 in the emergency room. Calling the system “overloaded,” she said many clinicians she saw appeared burned out. “It wasn’t great to begin with, but now the pandemic has…exacerbated the problems that were already there,” Doucette said.
HELP ON THE WAY?
With enormous effort from both state officials and mental health clinicians and advocates, the outlook for the mental health system is improving, if gradually.
The state is working to add more beds, offering financial incentives for hospitals to open psychiatric beds for children and adolescents. According to the Executive Office of Health and Human Services, there are currently 357 licensed inpatient psychiatric beds for children in Massachusetts, with 92 more expected to come online.
Today, some of the children who are hardest to place have multiple needs: children with autism and a mental health issue, children with a medical and mental health issue, or children who are aggressive. There is only a single hospital unit in the state dedicated to caring for children with both autism and another condition, and one other unit capable of providing medical and mental health care.
Some of the new units will serve these kids. Cambridge Health Alliance in December announced plans to add 42 beds for children with autism and other neurodevelopmental disorders. Boston Children’s Hospital is adding 12 beds for children with medical and behavioral health needs. With a dearth of beds in Western Massachusetts, Baystate Health is opening a 12-bed temporary pediatric psychiatric unit while building a permanent behavioral health hospital.
Brooke Karanovich, a spokesperson for the Executive Office of Health and Human Services, said the agency recognizes the mental health impacts of the pandemic. She said state officials are working to increase inpatient psychiatric treatment capacity and to reduce emergency room waiting times, by providing financial incentives and working with hospitals to accelerate the opening of new beds.
During the pandemic, the state increased reimbursement rates for behavioral health providers who are paid through MassHealth or state contracts. State officials also laid out a multi-year plan for increasing access to mental health care in the community. The plan envisions creating a centralized location someone can call to be connected to a mental health provider and developing a network of urgent care facilities that can address mental health crises at nights or on weekends.
Leigh Simons Youmans, senior director of health care policy for the Massachusetts Health and Hospital Association, said the increased state rates and the additional beds are making a difference. Youmans said one reason hospitals have not been using available beds, in addition to infection control requirements, is a lack of staffing. The association, which represents hospitals, has backed legislative proposals aimed at putting more money into staff, whether through loan forgiveness or higher pay.
The Children’s Mental Health campaign — an advocacy campaign run by Boston Children’s Hospital, the Massachusetts Society for the Prevention of Cruelty to Children, and other health care organizations –has laid out a legislative agenda that includes several bills to address boarding.
Bills sponsored by Sen. Cynthia Friedman, an Arlington Democrat who chairs the Health Care Financing Committee, and Rep. Marjorie Decker, a Cambridge Democrat who chairs the Committee on Public Health, would create a real-time web portal to track children who are boarding. They would also create a complex case resolution panel tasked with resolving administrative issues for children with complex behavioral health needs. This could resolve issues related to who pays for care when a child is eligible for services from multiple state agencies.
Other bills would facilitate the creation of behavioral health urgent care centers and make sure behavioral health resources are available in schools. Azubuike said the hospital is also advocating for reimbursement when behavioral health services are provided in the emergency department, so the hospital can begin treatment while a child boards.
The fiscal 2022 Senate budget proposal contains $10 million for new grants to create community treatment programs in every region to provide intensive community-based services to children and adolescents with serious mental and behavioral health needs.
“There’s no reason to believe we can’t address this,” Youmans said. “I think we’re hopeful, with all the stakeholders in the room, and really focused on it as everyone has been. Hopefully, we can make progress on it soon.”For Jill Cummings and her son, change can’t come soon enough. She said for her family, it has become a cycle: Her son acts up, gets sent to the emergency room, calms down before a bed opens up, then gets sent back to school with no real treatment, only to act up again.
“After a couple days, insurance pushes back and says we don’t need to continue to pay for this child. The crisis situation has passed. They can go home, especially because there’s no beds available anyway,” Cummings said. “So a lot of kids don’t make it to the bed that they’re trying to get.”