When patients with dementia become combative, there’s often nowhere to go but a state psych ward
By MARIE ALBIGES
AUG 14, 2019 | 2:17 PM
Cindy Piccirilli was out of options.
The Chesapeake assisted living facility where her spouse, 57-year-old Catherine Wright, had been living for nearly three months could no longer handle her violent outbursts and aggressive demeanor.
Wright, whose cognition had been steadily declining since she was diagnosed with early-onset Alzheimer's disease five years earlier, periodically had what Piccirilli called violent, random episodes — she would hit other residents and staff, and push and throw furniture around.
The former Virginia Beach public school teacher was younger than most residents in the memory care unit, and more able-bodied. It often took four staff members to bathe her.
When Wright became aggressive, staff at the assisted living facility, Commonwealth Senior Living at Georgian Manor, said Wright needed to go to a psychiatric facility, where her medications would be adjusted to deal with her dementia symptoms.
So one day in March 2018 after Wright had a particularly difficult weekend, Piccirilli finally agreed, hoping someone at a psych facility would figure out what was triggering the aggressive behavior and find a way to calm Wright down.
Piccirilli didn't realize it would end with her wife — who she described as usually calm and mild mannered — strapped to a gurney with her wrists chained to her ankles, screaming and crying, "You're hurting me!" as law-enforcement officers wheeled her out of a hospital emergency room and into a medical transport vehicle that would take her to a state psychiatric hospital 70 miles away, where she would develop a bowel infection and never walk again.
Health officials and experts agree this never should've happened. They acknowledge a state psychiatric hospital like Eastern State in Williamsburg wasn't the appropriate place for people like Wright, who become combative as a result of their dementia.
But a state law allows Wright and countless others living with dementia to be placed into involuntary hospitalization if they are in a psychiatric crisis and are deemed a threat to themselves or others.
Called a temporary detention order, or TDO, it's normally reserved for mentally ill individuals, but it's being used on people like Wright because there simply isn't anywhere else for them to go in Virginia for treatment.
There are a few factors that contribute to people like Wright ending up in state psychiatric hospitals, said John Oliver, who worked in the Chesapeake city attorney's office for 31 years and now represents people held under involuntary commitments.
First, there's an increasing number of people with behavioral and mental health issues that need medical attention, and a growing number of people with dementia.
According to the Alzheimer's Association, by 2025, more than 190,000 Virginians who are at least 65 years old will have some form of Alzheimer's.
And an estimated 200,000 people already have early-onset Alzheimer's, which can often affect people who are younger than 65.
Second, there's a limited number of facilities that are set up to manage the challenges of dementia, including the aggressive behavior, which can happen when a patient has a medical issue — like a urinary tract infection — but can't articulate it.
There aren't a lot of options for private inpatient hospitalization or crisis stabilization services close to home.
Third, there's a staffing shortfall. It's hard to retain people to work in those environments for low pay, and hard to find people properly trained to handle aggressive patients, Oliver said.
"When you reach that kind of situation, the state psychiatric hospitals are the backstop and they end up with these patients, ready or not," he said.
Ready or not, because state psychiatric hospitals aren't equipped to treat complex physical illnesses — they often lack oxygen tanks or supplies for ulcers — and don't have enough beds to treat everyone coming through the doors.
Virginia's "bed of last resort" law — passed in 2014 following the suicide of State Sen. Creigh Deeds' son after a psychiatric bed wasn't available for him — says the state psychiatric hospitals have to admit patients in a mental health crisis if no private facility will take them.
Since that law was implemented, state hospital TDO admissions have risen by 294%, and many of the hospitals are at or near capacity.
Private hospitals aren't required to admit those patients, and many of their beds are taken by an increasing number of people voluntarily committing themselves for psychiatric treatment.
State hospitals were traditionally designed for mentally ill patients who were having trouble getting their illness under control and were typically admitted for longer. But now, many of the TDO patients stay less than a week, according to the Department of Behavioral Health and Developmental Services.
Dr. Daniel Herr, the department's deputy commissioner for facility services, estimates 38% to 40% of people admitted to state psychiatric hospitals under a TDO require specialized care beyond mental health treatment.
Rick Jackson, a member of the state's Alzheimer's Disease and Related Disorder Commission, said there's been a debate happening for years in Virginia around the best place for someone with dementia whose behavior puts themselves or others at risk.
"We as a society have been struggling with this for decades," said Jackson, who's the executive director of the Riverside Center for Excellence in Aging and Lifelong Health.
Some, he said, argue the state should be responsible for their care. Others say that task should be handled by community-based for-profit and nonprofit facilities like nursing homes and assisted living facilities with memory care units.
But assisted living facilities have to balance caring for those with behavioral issues with protecting their other clients, Jackson said.
Often, like in Wright's case, the combative patients are sent to the emergency room, where doctors can try to treat the short-term issue causing the behavior — if they can identify it.
If they can't, and the assisted living facility is reluctant to take them back, the only other option is usually a state psychiatric hospital, Jackson said.
Cindy Piccirilli stands with her wife, Catherine Wright, in their home Thursday afternoon May 16, 2019. Wright has early-onset Alzheimer's and after an outburst at an assisted living facility was issued a temporary detention order. (Jonathon Gruenke)
Cindy Piccirilli reflects while discussing her wife, Catherine Wright, Thursday afternoon May 16, 2019. Wright has early-onset Alzheimer's and after an outburst at an assisted living facility was issued a temporary detention order. (Jonathon Gruenke)Wright moved into the memory care unit at Georgian Manor on Jan. 9, 2018, and over the next 10 weeks, staff struggled to bathe and feed her.
"Very combative when we changed her. It took four staffs to change her," read one entry in Wright's medical chart, a copy of which Piccirilli provided to The Virginian-Pilot. "She really fights. All four staff helped together to changed (sic) her," another entry states.
In the 10 weeks she lived at Georgian Manor, staff recorded at least 11 instances where Wright was labeled as "combative" or attacking staff members who tried to change her. Piccirillli said she noticed bruises on Wright's arms from where she suspected staff members gripped her to bathe her.
She also didn't eat much, Piccirilli said. Even though she was paying for three meals a day, she mostly ate chocolate nutritional drinks. By the end of her stay, Piccirilli said Wright had lost 30 pounds.
On that March day, she was originally sent to Chesapeake Regional Medical Center for medical clearance before being voluntarily admitted — through Piccirilli's medical power of attorney — to The Pavilion at Williamsburg Place, a private inpatient psychiatric facility.
Nearly 18 hours into their stay at Chesapeake Regional, with the medical evaluation done, the Pavilion said it could no longer accept Wright as a patient.
Mike Post, Pavilion's CEO, would not discuss Wright's case but said there are several reasons why the facility would turn someone away. It could be full; it could lack the resources to treat a medically complex patient, like someone who has cancer or needs dialysis; or the patient doesn't fit the population the Pavilion serves — for example, it doesn't admit children under 18.
In Wright's case, her medical records show she wasn't admitted because there appeared to be something wrong with her EKG.
So, like so many others in her situation, her next stop was Eastern State Hospital on a TDO.
TDOs, signed by a magistrate, involuntarily commit people experiencing a mental health crisis who might harm themselves or others to a hospital for up to 72 hours. After that, a judge can order further treatment if it's still needed.
More than 25,500 TDOs were issued in fiscal 2018 according to the state behavioral health department. The region that includes Hampton Roads had the second-highest number after Southwest Virginia.
That day in the ER was the first time Piccirilli — herself a retired Navy neurosurgeon — had ever heard the term temporary detention order.
She didn't know it involved a social worker calling around to different hospitals to see if they could admit her wife. She didn't understand why, after the eight-hour limit to find a bed mandated by state law, the only option was Eastern State Hospital, a place she'd been told by Chesapeake Regional staff to avoid if possible.
Piccirilli wasn't told a TDO meant armed officers would show up and take her wife to Eastern State in handcuffs, even though she said Wright was medicated and calm at that point.
And she didn't understand why her medical power of attorney — which she and Wright had obtained before Wright's cognitive decline — was powerless to stop it.
Patients under a TDO are usually taken to the psych facility in a police car, though a new state alternative transportation program is trying to make that less common. Wright couldn't get out of bed, so a medical transport vehicle was called, and Piccirilli followed it and a police car up Interstate 64 to Williamsburg in the middle of the night.
"Catherine was a frightened child, being arrested and chained," Piccirilli said.
Similar ordeals are happening more frequently in Virginia, Herr said in a phone interview.
In fiscal 2013, 16 people with a primary diagnosis of dementia were admitted to the state's psychiatric hospitals under a TDO, according to the state behavioral health department. By this year, that number had risen to 115.
The state code section around TDOs doesn't have any exceptions for people with dementia who are experiencing behavioral changes because of underlying medical issues.
In Wright's case, that issue was extreme constipation. At Chesapeake Regional, a test showed no medicine in her system, despite what had been prescribed to her at Georgian Manor.
And a week into her stay at Eastern State, she developed bed sores and a fever and was taken to Sentara Williamsburg Regional Medical Center, where doctors discovered a bowel infection.
But the state code is clear — if a person is in a crisis and is deemed a threat to themselves or others, the only place for them is at a psychiatric hospital. And often that means handcuffs and a police car.
Someone with a chronic condition like dementia needs different treatment than a person in the midst of a psychiatric crisis. But in the eyes of the law, Herr said, they both meet the definition of someone who should be temporarily detained.
Larry Fitch, a professor of mental health law at the University of Maryland law school, studies involuntary commitment proceedings and said situations like Wright's happen all over the country.
He said some states have found ways to prevent people with dementia from being involuntarily committed.
In Wisconsin, the state Supreme Court ruled in 2012 that someone suffering exclusively from Alzheimer's disease couldn't be subject to Wisconsin's version of a TDO. Instead, they are appointed a guardian ad litem, who can place them somewhere other than a psychiatric facility.
In Kansas, the state Department of Aging and Disability Services and the Alzheimer's Association partnered to create the Kansas Dementia Bridge Project, which provides crisis support to dementia patients and tries to avoid hospitalization at all costs. Coordinators work with families to provide direct support, counseling, and advocacy in crisis situations at home, the hospital, at the doctor's office or during transitions to facilities.
Researchers found the Bridge Project significantly reduced patient anxiety, depression, resistance to care, impulsive behavior, verbal outbursts and wandering. Patients also were hospitalized less frequently, and people living at home were able to hold off on being placed in nursing homes.
In Virginia, a state-mandated work group consisting of mental health advocates, the private hospital system, law enforcement and state health officials wants to tackle one part of the temporary detention order cycle: reducing the number of people admitted involuntarily to the state's psychiatric hospitals, as Wright was.
Members are considering extending the eight-hour window Community Services Board workers have to evaluate the patient and find them a bed in a psychiatric facility. That could be key, because finding a facility that's also equipped to address the patient's physical issues often takes longer.
And if the time window is extended, a follow-up assessment could lead to a CSB worker deciding a TDO isn't necessary and placing them in a more appropriate setting, like a geropsychiatric facility.
The problem remains, however, that more appropriate settings are pretty slim, Herr said.
"Virginia doesn't have that in any consistent kind of way," he said.
Piccirilli still can't believe Wright's experience under a TDO was legal.
"The state treated her worse than a dog, and like a common criminal, because she has dementia," she said. "It was immoral, it was medically inappropriate —- they hurt her — and it was so inhumane."
After safely returning Wright home — she didn't want to bring her back to Georgian Manor — and hiring 24-hour help, Piccirilli finally had some time to think.
She wrote a letter to Commonwealth Senior Living, and the state department that regulates assisted living facilities. The department sent an inspector to investigate the claims, and found instances where medications weren't being administered according to physician's instructions, according to the Department of Social Services inspection report.
The inspector also found the facility "failed to ensure" that it not admit or retain clients "presenting an imminent physical threat or danger to self or others."
Bernie Cavis, who oversees residence programs at five Commonwealth Senior Living facilities in Hampton Roads including Georgian Manor, said the facility thoroughly assesses each potential new resident to determine their needs and appropriate level of care.
But sometimes, especially if the resident becomes violent, her staff doesn't have the capacity to restrain them and aren't able to safely calm them down, so hospitalization is inevitable.
"It's a process we avoid at all costs," she said.
Piccirilli drafted a letter to Gov. Ralph Northam — a pediatric neurologist — but never sent it. She read it over it once, and realized it was filled with raw emotion.
She spoke with a former Virginian-Pilot reporter who wrote about a case similar to Wright's four years ago.
She commiserated with another caregiver who wrote about her experience losing her husband to early-onset Alzheimer's.
More than a year later, she's still grappling with who to hold accountable, and what to tell her elected representatives. She wants to write to members of Virginia's congressional delegation and Deeds, the state senator whose son died.
"I don't know why the legislature keeps lumping dementia with psychiatric illness," she said.
She wants to see staffing standards put in place at assisted living facilities. She wants to see a facility that can give individualized care to people living with dementia, with physicians available to detect and treat underlying symptoms that cause aggressive behavior.
Six years into being officially diagnosed, Wright needs less intensive care as her condition has worsened. She sleeps more, and when the aides aren't there, Piccirilli sits with her, occasionally listening to the Carpenters.
Piccirilli often thinks about what Wright would've wanted if she'd hadn't gotten sick. She regrets taking Wright out of their home in Great Bridge, but the one positive outcome of the TDO ordeal was that Wright got to come home.
Now, Piccirilli's goal is to ensure her spouse has a dignified, peaceful death at home.
Correction: This article has been updated to reflect John Oliver worked for the Chesapeake city attorney's office, not the Commonwealth Attorney's office.
Marie Albiges, 757-247-4962, firstname.lastname@example.org
Jeff Sodoma, MPA, Esq. is a lawyer based in Virginia Beach, Virginia
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