The seizures started in the spring of 2013, right after Linda Cosey had two surgeries to remove a tumor from her spine and then rebuild her neck. They continued for months. Each time, her son, with whom she was living at the time, called an ambulance or took her to the emergency room himself. Cosey figures she must have gone to St. Joseph Hospital's ER at least 30 times that year.
"I would just shake," says Cosey, a petite 54-year-old with a soft, deliberate voice and shy smile. "I was always aware of what was going on. It was so scary, and there was nothing I could do about it. One day I had one that lasted at least four hours. I was exhausted."
Cosey sits stiffly on a black leather couch, her walker in front of her, inside her sparely elegant, black-and-white-themed apartment at Silvercrest, an assisted-living residence in Eureka generally for low-income seniors. It's a sunny October day and a golden sweep of grass and trees is visible through Cosey's window.
"I wish I could get out there and walk," she says wistfully.
Cosey has neurofibromatosis, a genetic disease that causes tumors to grow on her nerves. It was discovered when she was 23 years old, and she had her first surgery at 28 to remove a tumor from her leg. Since then she's had at least 12 surgeries to remove tumors. One in 1991 left her right arm crippled; she'd been about to finish nurse training and had a job lined up, but had to abandon that dream.
She was mostly fine, otherwise, she says, until the surgeries in spring 2013; afterward, she couldn't walk unassisted, her right arm was completely paralyzed and her left arm was so weakened that now she can't grip things very well. And her neck hurts so much that she takes a prescribed synthetic morphine.
Cosey is no stranger to hospitals. But these seizures, and the repeated trips to the emergency room, were a new experience. She was thoroughly frustrated by the time she met nurse Donna McQueen, who came into her room at the ER in August 2013 and asked her if she wanted to take part in a program that might help her stop the cycle of ER visits.
She said yes. And by 2014 she was no longer having seizures. Her life had begun to improve in other ways, too.
Cosey was one of 29 patients who took part in the Humboldt County Care Coordination for Emergency Department Super-Utilizers project, a two-year pilot program that ended this summer and was funded by a $200,000 grant from the Robert Wood Johnson Foundation. Five other communities in the nation received similar grants; Humboldt was the most rural.
"Super utilizers" refers to people who use the emergency room excessively. They're also called "frequent flyers." Nationally, they are the sickest 5 percent of patients and, according to the foundation, responsible for more than 60 percent of health care costs. The project's aim was to coordinate these patients' health care so its quality, and their health, improved enough to keep them out of the ER. It was based on an approach developed by a family practitioner in Camden, New Jersey.
Patients were added to the program throughout the two-year period, so data for many of them are still being crunched. But raw results for 18 of the patients revealed a 70-percent drop in their emergency room visits in the six months after joining the project, compared with visits the six months before, and a corresponding nearly 100 percent drop in unreimubursed costs. And, post-project, new initiatives have arisen to continue working with people who use the ER too much, using lessons learned in this pilot project.
The project sprang from another initiative by the Robert Wood Johnson Foundation called Aligning Forces for Quality, which gave 16 communities across the country — including Humboldt County — money to design projects to improve the health care experience for patients and providers and reduce health care costs. These projects include finding ways to: engage patients in their own care; coordinate the efforts of health care providers; and collect and publicly report data on quality of care, costs, procedures and more.
Aligning Forces Humboldt began in 2008 and is led by the California Center for Rural Policy at Humboldt State University. The Humboldt-Del Norte Independent Practice Association (IPA) and St. Joseph Hospital are close collaborators. Its projects have included workshops for people with chronic conditions and an awareness campaign to encourage residents to get screened early for colon cancer (a regular killer here in Humboldt). In 2011, the Robert Wood Johnson Foundation started a new initiative to work specifically with patients who use the emergency room excessively, and awarded six of the Aligning Forces communities more grant money to develop models for such patients. Besides Humboldt, the other five are Greater Boston, Cleveland, Cincinnati, Maine and West Michigan. The models these communities come up with to improve health care quality and reduce costs are going to be used to develop a web-based guide for other communities to follow. Humboldt's will specifically be useful for rural communities.
The communities were coached by staff from the Camden Coalition, an organization founded by Dr. Jeffrey Brenner. In the late 1990s, Brenner was a young family doctor working in Camden, New Jersey, a poor, crime-ridden community. He gathered data from his city's hospitals, mapped it out geographically, and discovered, as he put it in a story on the Robert Wood Johnson Foundation website, "an unbelievable story of wasteful, disorganized services."
"Somehow good doctors were going to work every day at good hospitals and delivering a very disorganized set of services," he said. "My patients were in those data. They weren't getting their needs met."
He noticed that almost half of Camden's residents were going to the ER for head colds, sore throats and the like. And he discovered that 20 percent of the city's patients accounted for 90 percent of the costs. And he discovered hotspots — such as some of the sickest, most-ER-visiting patients, all living in the same senior residence.
The foundation sponsored Brenner to start the Camden Coalition, and he began finding these patients and working intensively with them and their various health care and social services providers. Resolving their social issues became key to his approach, and coordinating their various care providers' efforts, so he developed a care management team of nurses, social workers, community services providers and health coaches. The patients he worked with began using the ER less. A happy side effect, Brenner found, was that their health care costs drastically declined.
In Humboldt, project leaders first studied St. Joseph Hospital patient data from 2011. They focused on the top 50 users of the emergency room — who collectively made 1,359 visits to the ER that year, with one patient accounting for 82 of those. They looked for hotspots. And they found one, with a pattern that was surprising in many ways, says Sharon Hunter, a nurse with St. Joseph Hospital for 29 years who was in charge of the hospital's Care Transitions Program at the time of the project (she recently went back to school and works part-time now at the hospital as an adviser). Of the 50 top ER users, 30 actually saw a primary care provider regularly, too — something not at all expected — with most going to the Eureka Community Health Center. Most were covered by publicly funded insurance (Medicare and Medi-Cal) — not uninsured, as had also been expected. Yet they went to the ER most often on Wednesdays during the daytime, mostly with complaints of joint pain, headaches or abdominal pain — not at night or on weekends when their provider's office might not be open. They tended to be between 40 and 60 years old and to have complex and sometimes multiple medical problems for which they were also being treated.
They weren't predominantly homeless, as one might expect of ER frequent flyers, although a few were and many were at risk of being homeless. The project team — comprised primarily of Priority Care, Care Transitions and Eureka Community Health Center — decided to focus on the high-ER users who had regular providers and insurance and complex medical conditions, and to coordinate with health, mental health and social service providers and others in the community to figure out why they were using the emergency room so much. Rosemary den Ouden, chief operating officer for the Humboldt-Del Norte IPA and the project manager, hastens to say that it was "not the patients' fault in any shape or form."
As Hunter puts it, "We wanted to find out, 'What is it about our current health care system that failed for them?'"
Between July 1, 2012 and June 30, 2014, the team slowly built a caseload of 29 patients. And they began tackling each patient's issues intensively, with lots of hands-on, coordinated attention.
The project revolved around a nurse-led team approach. As in Cosey's case, the patients' first contact in the project was usually Donna McQueen, the Care Transitions nurse the hospital hired specifically to work with excessive ER users. McQueen, a long-time emergency and urgent care nurse who favors Western snap shirts and silver jewelry, would introduce herself to them when they came into the ER. She'd sit beside them and, in her warm and friendly manner, explain all of the ways she, and others, could help them. If they agreed to participate in the project, she enrolled them and began finding out more about them, building a relationship. She made twice-weekly home visits, sometimes with the social worker intern hired for the project, and often met family members. She talked to patients about their goals in order to devise a focused care plan — Cosey, for instance, wanted to stop having seizures and to improve her mobility. And McQueen went with patients to their doctors appointments, prepping them beforehand, taking notes there, interpreting the medical jargon for them, helping reconcile their medications from various providers, and more. If the patient seemed in need of mental health or behavioral counseling — for depression, say, or addictions — McQueen made sure someone skilled in those disciplines sat in on the patient's regular provider appointments.
McQueen, the social worker and later the Priority Care nurse also connected patients to community services. Some needed housing, or transportation. In Cosey's case, she was living with her son and 10-year-old granddaughter in an upstairs apartment, and to get up and down the stairs Cosey had to hand her walker to her son and hoist herself along the railing with her weak left arm. Her son had taken several months off work to help his mother after her surgeries. McQueen said he was really helpful when she started meeting with Cosey. But eventually he had to return to his job as manager of a store at the mall. And the stairs were a big issue. So the social worker filled out an application for Cosey to live at Silvercrest, and she moved into her own apartment this July.
The project also secured a free Angel Flight to San Francisco for Cosey last winter to have surgery to remove a tumor from her leg, and set her up for eight weeks of physical therapy afterward.
"I think she was really happy to have someone as an advocate," McQueen says.
McQueen spent up to six months with each patient, and then gave him or her a "warm hand-off" to the nurse case manager with the IPA's Priority Care program, where the intensive coaching and care coordination continued. While Care Transitions is a short-term program, Priority Care is a long-term program and has its own regular caseload of about 400 patients. Some patients continued with Priority Care for the duration of the program, and some were eventually handed off to their primary care providers (usually Eureka Community Health Center). A few dropped out and didn't finish the program.
One of the things Jenifer King, a care manager nurse with Priority Care, says she also did with her patients, like Cosey, was have them phone her first whenever they had the urge to dial 911.
"If she'd call and say, 'I'm thinking about going to the ER,' I'd say, 'You went to ER last week; how did it help you?'"
And then she'd help the patient get over to his or her primary care provider if the situation truly was an emergency.
All of these providers — nurse care coordinators, primary care providers, behavior and mental health specialists, social workers — held bi-weekly huddles to talk about program issues and refine their approach. They also met frequently to talk about specific cases. These huddles not only improved coordination of the patients' care, but made things easier for the providers — and served as a support group for them. "Getting people to follow through and do the things you ask them to sometimes is very difficult," says King. "You're working hard on their behalf and yet sometimes they don't follow through; you learn to care for them, but you need them to be active in their health care."
As the project progressed, more patterns emerged that indicated where some of the gaps in care were occurring.
The team found, for instance, that the hospital emergency department had actually been writing care plans for the patients, and so "were doing a good job in trying to care for these patients," says den Ouden. "But nobody knew they were doing this so nobody else saw these plans."
The team also found that many of the patients had underlying mental health issues, or behavioral issues such as addictions, and yet lacked easy access to behavioral and mental health services.
"The county mental health department does a great job," says Hunter, "but their programs are pretty structured, and people have to be willing to go [to them] for help. So we started working with the county mental health department to see how mental health could be included in a more seamless way. And that was a success. Eureka Community Health Center hired a mental health staff person, and as our patients came into their primary health care appointments, she'd be included in their appointments. She'd be introduced, do an easy access, low-stress visit with these clients, and then start working on a behavioral health plan — such as counseling for addiction issues."
Perhaps the most informative finding the team made was that "pretty much across the board, most of the individuals we were working with had suffered some sort of early life trauma," says Hunter.
This possibly explained why many of them, though certainly not all, used the emergency room so much, says den Ouden.
"A lot of these folks using the emergency department had early life trauma — sexual, drug, physical abuse or whatever — and they see the emergency department as a safe place. A lot also said their family was troubled when they were growing up — that they had a parent who was in the emergency room a lot, for instance, and 'there was this nice nurse who always talked to me ...'"
The other communities doing similar projects had discovered this, too, and a new term, "trauma-informed care," has emerged. Basically, say Hunter and den Ouden, it means the health care provider changes the question it asks the person using the emergency room a lot from "What's going on with you?" to "What happened?"
In Linda Cosey's case, what happened was she was born with a complicated, rare, incurable disease that has required multiple surgeries over the years. She was partially disabled in 1991, and she suffers from depression. In 2013, she became more severely disabled after surgeries on her spine and neck. Then she started having seizures.
When McQueen first met her, last August, Cosey was having a particularly bad month. She'd had numerous frantic trips to the ER. She'd been prescribed ineffective medicine there. An ER doctor had told her she was faking it — which caused her son to get into a yelling match with the doctor. Cosey was eager to try something new that might help. Not long after she signed on, she was at a doctor appointment at Eureka Community Health Center with her nurse case manager, and she had a seizure right there in the exam room. Luckily, she says, the doctor attending her was dually trained as a psychiatrist.
"And he knew just by looking at me what was wrong," Cosey says. "He gave me medication — a pill under the tongue — and it worked right away."
The doctor told her she was having pseudoseizures — more accurately called psychogenic non-epileptic seizures — which can be brought on by severe stress. She still takes the medication, which also helps her sleep at night, and she hasn't had a seizure since. It was a huge relief. She hasn't been back to the emergency room, either, except once in January because her legs suddenly gave out on her completely.
But the project is over now, and she's been officially handed off to her primary caregiver at Eureka Community Health Center, just across the street from Silvercrest. Her physical therapy sessions have ended, too. All of the people who'd come around, helping her and giving her special attention, have gone away. This is actually a good thing, Cosey realizes, and she's glad she's not going to the ER all the time anymore. Her son comes over to help her with her therapy exercises when he can. Her granddaughter visits her on the weekends and goes to church with her on Saturday.
"She does everything in her little power to help me out," Cosey says.
But she gets pretty lonely, she says, and has decided she hates living by herself. She says she's probably the youngest person here at Silvercrest, and every day it seems someone dies. Her hands don't work well enough to play Bingo, cards or other games with her neighbors. Plus getting around, even with her walker, is really hard. She misses walking more than anything — she used to walk six miles every other day, and especially liked the hills on S Street.
"I get really depressed about it," she says, adding she'd had a particularly bad day recently and cried and cried and cried. Most days she stays in. "I sit here. Watch TV or read my Bible. Pray."
But this is the nature of living with her disease and related complications. More tumors are in her future — they form slowly, she says. But she's keeping on top of it and has some MRIs and X-rays scheduled for later this month. She's not sure she'll have surgery again, however.
Although this particular grant-funded project is over, several of the groups involved in it have continued on with similar work. Priority Care continues to enroll patients with chronic, complex health issues. Eureka Community Health Center has started a program called Health Connections to provide patients with a health coach who works with them and their primary care provider to develop a health care plan. There's a new pain management initiative starting up. And Donna McQueen is now permanently embedded as the complex care liaison nurse under the Care Transitions program in the St. Joseph Health System. She works three days a week in the emergency room at St. Joseph Hospital and one day a week at Redwood Memorial, still screening for people with high use of the ER but focusing in particular, now, on patients who have addictions or are homeless, and connecting them to services.
Staff from the various organizations involved in the excessive-ER-use project still get together in bi-weekly huddles, which are now coordinated by Eureka Community Health Center and include its Health Connections health coaches and other new participants.
For McQueen, the project led to sort of a dream job. Sure, she wishes there were more resources out there — more drug and alcohol treatment centers, more homeless resources, more mental health resources.
"We're a small county with a lot of people with problems," she says.
But she loves her job.
"I know how often, as a nurse, I used to wish I could spend a little more time with a patient and help figure out ways to help them have a better life." Now that's exactly what she does.
Top 50 emergency room users, 2011
Total visits to ER: >1,359
Visits made by top user: 82
56 percent were women
54 percent were between ages 41 and 85
30 had an identified primary care provider
Most had Medicare and/or Medi-Cal
Source: Aligning Forces for Quality
Average 6-month charges for patients in the Humboldt “super utilizer” project
Pre-enrollment: $109,851 … and unreimbursed amount paid (then written off) by St. Joseph Hospital: $36,674.
Post-enrollment: $3,788 … and unreimbursed: $1,265
Source: Aligning Forces for Quality
First enrolled patient in the Humboldt “super utilizer” project
21 visits to the emergency room in one year
$80,000 in corresponding unreimbursed ER charges
Six months post-project:
Seven visits to the ER
Less than $1,000 in corresponding unreimbursed charges
Source: Aligning Forces for Quality
Unreimbursed care covered by hospitals in California annually
Source: California Hospital Association
The Humboldt “super utilizer” project enrolled 29 of the top ER-using patients at St. Joseph Hospital between July 2012 and June 2014. As of June 2014, here is how they had progressed through the project system:
Nine were officially handed off from Care Transitions to Priority Care
One started with and remains with Priority Care
Six were directly handed off to their primary care provider
Three had no specific hand-off: One declined help, one dropped out and one went to a skilled nursing facility and then to jail.
10 remained with Care Transitions, with various plans: one to go into a social services case management system, one too new to the project to have finalized goals, six to their primary care provider, and two to the long-term Priority Care.
Source: Final Narrative Report, “Improving Management of Health Care Super Utilizers,” June 30, 2014