Some patients with mental illness, particularly children, are spending days stuck in tiny windowless rooms in hospital emergency departments waiting for treatment, a persistent problem despite new statewide rules designed to resolve the backlogs.
From February through May, 155 patients in mental health crisis spent at least four consecutive days in an emergency room, according to Massachusetts officials who began gathering the data six months ago. A few patients slept or “boarded’’ in the ER for two weeks.
Many others waited two to three days for a spot to open in a psychiatric facility. In most cases, patients are not allowed to go outside — or even leave their rooms — and do not have access to a shower. Television is usually the primary distraction.
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New rules adopted this year require mental health officials to intervene in the most dire cases — patients waiting 96 hours — and put pressure on psychiatric facilities and insurers that pay for the care to find an appropriate spot.
State officials said these and similar efforts have been successful in part, but a shortage of mental health treatment beds is a persistent problem.
Even as the state’s number of beds has grown, to 2,727, so has the number of patients coming to emergency rooms in mental health crises — rising 13 percent between 2011 and 2015.
The backlog in emergency departments not only slows treatment for mentally ill patients, but it creates stress for doctors and nurses, who are generally not well trained to manage patients who might be psychotic, violent, or suicidal. More than 6,000 psychiatric patients a month arrive in emergency departments statewide.
At Massachusetts General Hospital, the emergency department sees 500 to 600 mentally ill patients a month, a number that has increased gradually and is about 6 percent of its total patients.
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Dr. David Brown, chairman of emergency medicine, said the new state rules are a positive step, but it’s too soon to tell if they are having an impact. “The psychiatric boarding issue hasn’t gotten markedly better,’’ he said.
That is especially true for patients who are harder to place in inpatient psychiatric units because they are aggressive or young or have a medical illness, autism, or other developmental delays.
Collin Concheri, 16, of North Reading was such a patient. Collin has been diagnosed with autism, developmental disabilities, and severe anxiety that causes him to sometimes hit, kick, and bite his family members and teachers. He experienced “really bad aggression’’ in March and ended up in an ambulance on the way to Winchester Hospital’s emergency room, where he was not allowed to leave his small windowless room even to shower, said his mother, Linda Concheri. Collin stayed there for five days.
His mother said the emergency room was no place for a mentally disabled boy.
Her son’s neighbor on the unit was clearly suffering from problems of her own and screamed and swore, Linda Concheri said.
Security guards strapped her son to the bed at one point. Staff did not employ special de-escalation techniques when her son acted out and did not seem to have training in caring for autistic teens, she said.
“With my son, the more hands on him, the more aggressive he becomes,’’ she said. The restraints were “just really harsh for someone who doesn’t understand what’s going on.’’
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Finally, a spot opened for Collin at Bradley Hospital in Rhode Island, where he spent almost three months.
Like many hospitals, Winchester is seeing more patients with mental health diagnoses arrive at its emergency room. The hospital is not licensed to provide inpatient psychiatric care, but “our staff works diligently to help these patients find access to the appropriate type of care they need,’’ hospital spokeswoman Kyle Reilly said in a statement.
“We recognize that extended stays in emergency departments are challenging and stressful to patients and families,’’ Reilly said.
Corrina Kelly-Dias played board games and watched videos with her 13-year-old nephew during the four days he spent earlier this year in a bare white room with a television and a security camera in the South Shore Hospital emergency department in Weymouth.
Kelly-Dias is the guardian for her nephew, Phillip, who suffers from post-traumatic stress disorder and severe anxiety and has had several long emergency room stays.
A crisis team evaluated Phillip once a day to make sure he still needed inpatient psychiatric care and called psychiatric hospitals searching for a spot. Patients “lose hope,’’ said his aunt, who stayed in the emergency room with Phillip, who fears abandonment.
Kelly-Dias had heard that Franciscan Children’s Hospital in Brighton provides high-quality care, and called there herself. An opening never materialized.
Eventually, Phillip got a bed in Springfield, two hours away from where the family lives in Randolph.
“There is really nowhere else in health care where you show up in the ER and they are going to send you halfway across the state,’’ said Kate Ginnis, director of behavioral health advocacy and policy at Boston Children’s Hospital and a leader for the advocacy group the Children’s Mental Health Campaign.
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Two years ago, Massachusetts Health and Human Services Secretary Marylou Sudders created a task force on emergency room waits for mentally ill patients to increase focus on the problem, which has plagued patients across the country.
The new regulations grew out of that effort and require most insurers to start a psychiatric bed search for members who have been stuck in the emergency room for 48 hours — and to go outside the insurer’s regular network of providers if necessary. At 96 hours, a patient’s case goes to the Department of Mental Health, which can negotiate with Medicaid and private insurers to pay a higher rate to a psychiatric hospital for admitting a patient who needs more supervision or a private room.
Of the 155 patients referred to the state over four months, more than half were under age 18. It took the department almost two days on average to find these patients a spot in a psychiatric facility, statewide data show. In a few cases, it took 9 to 11 days.
“The insurers and the state have to recognize that some patients are more difficult than others,’’ said David Matteodo, executive director of the Massachusetts Association of Behavioral Health Systems.
The hospitals with the most stuck patients were St. Luke’s Hospital in New Bedford, Sturdy Memorial Hospital in Attleboro, and Boston Children’s Hospital. Lack of beds and patient aggression and acuity were the most common reasons why patients spent days in the emergency room waiting for a psychiatric facility to agree to accept them, according to the state data.
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The data do not include patients who wait in the emergency room fewer than four days, but estimates say that nearly one-quarter of psychiatric patients wait more than 12 hours.
The policy adopted early this year “was developed in an effort to change the culture regarding how behavioral health patients are managed’’ in emergency rooms, according to an e-mail from Sharon Torgerson, spokeswoman for Health and Human Services. “In many cases, insurance carriers were not aware that their members had been boarding in an [emergency room] for many days.’’
Generally, the state will not intervene when patients refuse placement at an institution they consider to have poor quality care or where they’ve had a negative experience. This means patients with mental health issues can feel pressured to go to a certain hospital, rather than having choices like patients with physical illnesses.
State officials have pushed hospitals to open units for complicated patients who require more staff and said the state has “recognized these enhanced services’’ in new Medicaid rates for psychiatric providers.
The California psychiatric company Signature Healthcare Services recently opened a hospital in Westborough, with plans for three units for youths in the next three months, including a 17-bed unit for adolescents with autism, which would be the first in the state. Advocates said the company has delayed its plans because of staff shortages.
Ginnis said the Children’s Mental Health Campaign is attacking the problem from all angles. Next month, it will provide training to emergency room staff from community hospitals across the state to better care for mentally ill children. “Providers are champing at the bit to come to this,’’ she said.
Liz Kowalczyk can be reached at kowalczyk@globe.com.