Health Care Superusers Overload Hospital ERs
By Tim Darragh, The Morning Call (Allentown, Pa.) | |
McClatchy-Tribune Information Services |
The doctors were wrong. His heart was in terrible shape, but the 77-year-old former engineer stabilized and even wrote a series of columns for his hometown paper in
The fact that Bolster did not die, however, does not mean he has been living well. His breathing becomes labored after minimal exertion. Just getting to a doctor's office can wear him out.
"I'm supposed to be dead," he said. "I feel like I'm dead half the time."
Bolster's health has been a nightmare by any standards. A recent diagnostic summary of him by St. Luke's
Such a record would keep anyone busy with doctor appointments and trips to the pharmacy. But Bolster's health is so precarious and his care so uncoordinated that his problems recur over and over, forcing him to seek out expensive emergency department treatment and hospital admissions at a rate unthinkable to most people.
In current health-care lingo, that makes him a "super-utilizer." To health-care experts, super-utilizers are not trauma victims or cancer patients undergoing chemotherapy and other exotic, expensive treatments. They're people like Bolster, who have poorly managed chronic ailments, mental health issues and little or no social support. They consume enormous amounts of health-care services, much of which would have been unnecessary had they gotten better-coordinated, earlier medical intervention.
The federal government estimates that the top 1 percent of patients, ranked by their health-care expenses, account for 22 percent of all health-care spending.
Bolster is typical of the super-utilizer. Over a span of about three months this year, he visited emergency departments at St. Luke's
During his admissions to the hospital and in out-patient visits, Bolster has had multiple X-rays, CT scans, electrocardiograms, blood tests, endoscopic procedures, anesthesia, breathing treatments and more, his records from April through early July show.
His health acted up again
Is there a way for Bolster to get his breathing and heartbeat under better control, while at the same time cutting back on the ambulance calls and emergency department visits? If so, can that strategy work for many people whose otherwise manageable chronic illnesses have spiraled out of control?
A small partnership of health-care workers, case managers, social workers, parish nurses, clergy and community exchange members in
Through a grant funded by the federal Affordable Care Act, the
In a nutshell, Brenner's theory is that stability is needed in a person's life before health-care can be addressed effectively. To achieve that stability, he finds patients who draw heavily on the system and, if they're willing, surrounds them with services specific to their medical, mental, domestic and social needs, until their health-care use is brought under control, which could take weeks or even months. By returning this missing stability to the patients' lives, Brenner and his supporters believe, health-care spending can be reduced substantially while patients' wellbeing and independence can improve.
Awarded the
As of October, they had enrolled 86 people from around the Lehigh Valley, far fewer than the 477 initially expected. Between that and time-consuming negotiations with local hospitals, the team's original goal of cutting
As the team would come to learn, trying to impose change on the health-care system is much different in reality than in a grant proposal.
On its journey, the
For more than a year,
Everybody pays
As a senior citizen, Bolster is a
Overwhelmed by the volume of paperwork, Bolster just throws the bills in the trash.
"They've spent millions of dollars on me since I didn't die when I was supposed to," he said. "I owe tens of thousands in bills. I can never pay any of this stuff."
Bolster says hospitals and social workers never follow up on promises to help him get on charity care plans, so he continues to get bills and threats to turn the debts over to collection agencies.
Beyond the payments, however, Bolster is frustrated by a fragmented, impersonal health-care system. He says calls go to voicemail systems and don't get returned. He knows health-care professionals want him to use one primary care doctor as the focal point for his care, but it takes months to get an appointment with his doctor at the
His breathing troubles and palpitations can come at any moment, he says, making a fist and jabbing it to describe the feeling of his irregular heartbeat.
"When you feel this going ba-BAH, ba-BAH, ba-BAH, you think you're having a heart attack. I call 911," he says. "They say you're not serious enough to go to the emergency room, go see your primary care.
"So I call my primary care and he tells me to come two months later? That's ridiculous. I have to go to the emergency room, I think I'm having a heart attack."
Hospitals and health-care professionals have a difficult time publicly addressing individual patient issues, citing federal privacy laws. That makes it next to impossible to verify all of a patient's claims, but Bolster signed a waiver of his privacy rights so St. Luke's could respond to
While acknowledging that Bolster deserves consideration and empathy,
"St. Luke's remains ready to offer further assistance to
Bolster's story illustrates the challenge before the Lehigh Valley partnership. He's chronically ill, socially isolated, personally challenging and without the resources to pay for the higher level of care he needs.
For Dr.
It's easy, she said, to point to how the patient got stuck along the way. "The stuff that I find really compelling is, well, where has the system gotten stuck?"
With his health stable over the last few weeks, Bolster wrote a song for a favorite charity that provides free surgery to children born with cleft palates. The closing lyrics could apply as much to him as the children.
"Restore these sad young children, remove their trouble and fear.
"Help them to find a new peace of mind.
"When we have the means to fulfill all their dreams, never say never... say, 'How?'"
Brenner's vision
It's been a seeming meteoric rise to prominence for
But as with stars in most fields, Brenner's rise was the product of years of hard work and a bit of good timing.
A few years ago, Brenner thought he could help a crime-reduction task force if he could identify where all the gunshot victims in
Eventually, he would stumble onto something that would have far more impact than the
These became "hot spots" of health-care use.
Over time, Brenner would come to see that patients in these places were not just struggling with difficult illnesses. Like Bolster, these were people fighting a health-care system where caregivers didn't communicate well with them or other caregivers. A system that provided the most incentives to doctors and hospitals to keep patients coming back -- not resolve their problems. A system that could treat physical ailments, but often overlooked mental health needs. A system that failed to consider the sick neighborhoods, poverty, lack of access to healthy food and other social factors that eat away at individuals' health.
Along the way, his research of claims data revealed an amazing finding for his
"We're neither doing a good job, nor are we spending our money wisely, which is like the dumbest thing in the world to do," Brenner said in an interview in his
Brenner said uncoordinated care affects everyone, not just super-utilizers. "The story of
He's not exaggerating.
Despite heavy health-care spending in
Looking at the data made Brenner ill.
While Brenner crunched the data, other health-care policy experts around the country were looking at ways to halt, and even reverse, the skyrocketing cost of health care.
President
Brenner's work addresses this spending binge. More importantly, he realized, better health could result if the team followed through on the care of super-utilizers.
First, Brenner said, caregivers needed to re-establish the trust that had been destroyed by years of substandard care.
"Having a healing, trusting relationship is at the core of human behavior change," he said. "And ultimately this is about helping people make better decisions and to change their trajectory in life. ... We change our lives in relationship to others and it's usually because someone who really cared about you was patient and accepting and kind and said something to you over and over and over until you changed it."
He brought on case managers and social workers who met the patients in the hot spots. When patients were amenable to it, the team would visit them, listen to their stories, build relationships, teach the patients about better care and direct them to resources to reconnect to society. After a few years, Brenner saw that in his first three dozen patients, emergency-room use was down 40 percent and health-care billings dropped by more than 50 percent.
The real change for Brenner came in
Today, Brenner's
This is the work the group in
After hearing Brenner speak here a few years ago, leadership at the Neighborhood Health Centers of the Lehigh Valley, which operates a bustling clinic on
But the lessons of
The partnership also needed to convince St. Luke's,
Without analyzed data, it's impossible to determine where to be most effective, and once the partnership gets there, measuring its effectiveness will take time. Brenner is only now recruiting patients for his first gold-standard study of outcomes from the
But the Lehigh Valley program does not have the luxury of time. Its grant expires next summer, so the remaining months will determine if the work here will be able to continue with new funding sources.
It may be that the partnership's future beyond next summer will rest not so much on hard numbers of hospital claims data as on the individual patients' life stories, which the team digitally records.
If there is only one story they focus on, it will likely be one that Brenner says sticks out among the super-utilizers: that of
The shades were drawn in the room in
It's not unusual for patients who need dialysis, a process that does the cleansing work of healthy kidneys, to feel fatigued after a treatment. But for Lewis on this August day in 2013, his fatigue was as much from simply being sick of being in the hospital as from the treatment.
At the time just 25 years old, Lewis' life was, to put it mildly, chaotic. He had attended
When he was 19, Lewis said his eyesight began faltering. He vomited nightly and had "crazy" headaches. He went to
But with his life unpredictable and bouncing from home to home, Lewis was not reliably showing up for dialysis. "I need their help, but I had a lot of other stuff that was making me miss dialysis," he said. "Transportation, housing."
Other times, Lewis said, he thought he could skip the thrice-weekly drag of dialysis. A single treatment usually takes three to four hours, not including travel time, which can be lengthy for those without a car. "I'd try to be Superman," he said.
Empty chairs in dialysis centers are health threats to patients and lost revenue to providers. Lewis missed so many appointments that local dialysis centers refused to take him. That brought on the inevitable health crisis, leading to Lewis' roughly three-month hospital stay beginning
Doctors also would diagnose him with pericarditis, an inflammation of the covering around the heart, said
But once he was stabilized in early July, Lewis could not leave. He had no home and without a fixed place to stay -- and a commitment to stay on dialysis -- Lewis had no workable discharge plan
Finally, doctors and dialysis providers arranged for Lewis to get back into outpatient treatment. That put Lewis on a path back to normalcy, but left a huge hospital -- and taxpayer-paid bill covering virtually all of summer 2013.
According to
At least Lewis was out and temporarily living with a family member. He spoke about getting his high school diploma so he could get a decent job. Things were looking up.
In Lewis' life, however, positive developments seem to generate their own turbulence. Lewis fell down a flight of steps after stepping on the strap of his cargo pants in December, dislocating both his knees. That sent him to ManorCare in
He walked out stiffly in March, after Cordero and other team members and volunteers addressed another driver of Lewis' poor health -- a lack of decent, consistent housing.
On a Saturday afternoon, Lewis took the keys to a modest apartment on
Once again a setback came. Cordero had her own health issues and had to step back from the program.
About three months after he had moved into the apartment, Lewis was told to leave. Lewis was back bouncing from house to house.
But in the year since that ultra-long stay at LVH-Muhlenberg, Browne said, Lewis did not require one day of hospitalization related to his kidney disease.
Mental health issues
Getting super-utilizers to change is difficult for any number of reasons, but one of the most significant is that the majority of them have untreated mental illness. Undiagnosed and untreated behavioral health problems, which often lead to substance abuse, is a common issue, said Letcher, the partnership's medical director.
"These patients are sick and difficult to manage. Many of them have not been willing to take on the extra stigma of saying that I have a diagnosis or anxiety, even though when you hear their story, it's depression and anxiety that drive their admission" to the hospital, she said.
One super-utilizer patient, a diabetic, also was having trouble keeping her food down. After being referred to the partnership, Letcher said they could see the woman wasn't vomiting -- she was spitting out her food. She'd be upset and spit out her food, so her brother would take her to the emergency room and that would simply increase her anxiety, Letcher said.
Earlier this year, she underwent treatment for depression, and the eating issue faded.
"This is probably at least 15 admissions in that it took us to stop trying to solve this with a medical model and to see the bigger picture," Letcher said.
Mental illness also comes in connection with other health and social issues. In
"I was gone," Cook, 49, said from an
Getting into the super-utilizer program, Cook said, helped him when he was ready to help himself. "I was already grown," Cook said. "I had to wise up."
That's a key point program officials and experts in the field say about super-utilizer programs. Nothing will work unless the patient is ready to try.
"He was sad, depressed, didn't want to take his medicine,"
It's difficult to find treatment for a
Understanding the central link between mental illness and super-utilization, Letcher called in Haven House, an
Now, a patient can schedule an appointment with a doctor and can get immediate attention as well from a mental health-care provider, said
"This is groundbreaking" she said. "It should always have been this way... bringing these two worlds together."
Knowing that mental illness drives overuse of health care doesn't make it any easier for the public to swallow, however.
"Individuals who are chronically sick from behaviors that are self-harming cost us... They're very, very expensive," said Dr.
People tend to be more forgiving of someone who racks up a big taxpayer-paid health-care bill because he didn't wear a helmet and got in a motorcycle accident, Caplan said, than the person who abuses drugs and gets obese.
"We're a little picky at what we get mad about when it comes to sin," Caplan said.
It's a conundrum that is not lost on the partnership's leadership.
It's something that Letcher wishes more health-care providers would try -- less "savior mode" and more patient-first care.
"What if everybody deserves help... instead of saying these are undeserving needy?" she asked. "How about we understand their story, instead of judging them as undeserving? That's a hard thing for hospitals to give up. It's in their culture."
The firing of
"That was a painful one," she said. "Watching so many people I know who are good people ... talking themselves into doing something they knew was wrong."
The key, in Letcher's mind, is changing the question from "What's wrong with you?" to "What happened to you?" Reframing the question that way, she said, redirects some of the power from the clinician to the patient.
But as the partnership learned over its first couple of years, for such difficult, unpredictable patients to change, caregivers and all those the patients depend on must change first.
Monday: The challenges of transportation.
What is a "super-utilizer?"
Generally, they are patients who are among the top 1 percent based on their health-care expenses, not including trauma victims or patients who require regular, expensive care such as chemotherapy. They often have multiple poorly managed chronic and behavioral health illnesses, lack social support and are frequent users of hospital emergency departments. Because their health needs are so complex and their care uncoordinated, these patients frequently require expensive hospitalizations.
The Partnership
These organizations are involved in the
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