Health care superusers overload hospital ERs

Ten years ago, Alvin Bolster was told his heart disease was so advanced, he only had three months to live.

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 Maine, musing about death and dying from his hospice room. Today, Bolster lives in a wheelchair-accessible motel room in Hanover Township, Lehigh County, where he writes letters and composes music on a keyboard.

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 University Health Network identified 23 serious health issues, including chronic obstructive pulmonary disease, edema, obesity, sleep apnea, atrial fibrillation, internal bleeding, kidney disease, congestive heart failure and schizoaffective disorder.

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 University Health Network and Lehigh Valley Health Network at least eight times, Bolster's Medicare records show. Medical transport, sometimes advanced life support ambulances costing $900 per run, took him and sometimes returned him to his motel room.

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 Sept. 26, and in the following week, he was admitted and discharged from St. Luke's three times for respiratory issues.

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 Allentown are trying to find that health-care sweet spot.

Through a grant funded by the federal Affordable Care Act, the Lehigh Valley Super-Utilizer Partnership came into being 2 1/2 years ago, hoping to emulate the work of Dr. Jeffrey Brenner, a Camden, N.J., family doctor. He is the face of a different approach to providing care to patients like Bolster.

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 $1.7 million grant in 2012, the 10-person team in Allentown went looking for the hardest health-care cases — people who had been hospitalized at least twice in six months for complex illnesses, had at least two chronic conditions and regularly consumed six or more medications.

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 $13 million in expected health-care spending seems unlikely.

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 Allentown team confronted questions fundamental to reforming the health-care system under Brenner's model. Is health care solely about preventing or fixing illness and ailments, or does it extend beyond the physical realm? Is the problem that patients don't do what doctors tell them to do, or does it reside with health-care providers? What incentives do health-care providers have to change a system that rewards them for the volume of business, not better health?

For more than a year, The Morning Call has tracked the path of patients, caregivers, administrators and outside agencies working in the super-utilizer partnership. The newspaper wanted to see if Brenner's ideas can bring change to a health-care system that overall spends far too much while providing mediocre results.

Everybody pays

As a senior citizen, Bolster is a Medicare patient, so his recent bills, totaling thousands of dollars even after deep Medicare discounts, were paid largely by U.S. taxpayers. With Medicare already consuming 14 percent of all federal spending, that number only will rise as baby boomers age. The Kaiser Family Foundation estimates Medicare spending will rise from $512 billion this year to $858 billion in 2024.

Medicare, however, doesn't cover everything. Without insurance to cover what Medicare doesn't, Bolster is on the hook for thousands of dollars. For just one visit to St. Luke's on April 25, Bolster's deductible is $1,216, which he says he can't pay.

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 Veterans Affairs facility in Allentown, he says. He now goes to a St. Luke's clinic as well as the VA for primary care.

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 The Morning Call.

While acknowledging that Bolster deserves consideration and empathy, Ken Szydlow, St. Luke's vice president of marketing and public affairs, said Bolster failed to follow through on the care plan for his "many significant health issues," which have "resulted in repeated emergency room visits and hospitalizations." He also said Bolster has refused to work with hospital staff to set up a financial assistance plan.

"St. Luke's remains ready to offer further assistance to Mr. Bolster and others in need," he said.

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. Abby Letcher, medical director of the partnership, the program is helping on one small level to change the discussion from blaming patients for being ill to addressing why the health-care system doesn't make them better.

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 Jeff Brenner. A few years ago, he was a family doctor struggling to keep his practice open in one of the country's most notoriously poor and crime-ridden cities. Today, he's a MacArthur "genius award" winner and a media-savvy figure whose name is synonymous with health-care reform.

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 Camden lived. The project didn't pan out, but Brenner continued to analyze the hospital claims data he had accumulated.

Eventually, he would stumble onto something that would have far more impact than the Camden crime project: Using the data and mapping software, Brenner found that again and again, a large percentage of emergency department patients were coming from the same neighborhoods, often the same apartment building.

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 Camden population: The top 1 percent of "super-utilizers" consumed 30 percent of all the local health-care spending.

"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 Camden office. "As taxpayers we should bang our fists and say, 'I'm not going to take this anymore. I'm not going to spend all this money and get crap for it.'"

Brenner said uncoordinated care affects everyone, not just super-utilizers. "The story of Allentown and the story of this work is really not about poverty," he said. "It's about better care at lower cost for every American."

He's not exaggerating. The United States is well-known for having a health-care system that spends much more per capita than systems in other countries. But Americans are not getting anything near an equal return for that investment. Study after study shows the U.S. lagging all the other developed nations in measures of health and wellness.

Despite heavy health-care spending in Camden, Brenner had to close his family practice, he says, because too many patients were seeking their everyday primary care at hospital emergency departments — generally, the most expensive place to get health-care.

Looking at the data made Brenner ill. Camden could have four or five fully staffed family practice offices if they had been paid what the city's hospital ER's received for treating head colds, he said.

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 Barack Obama energized the effort to reform health care. Under a lesser-known section of Obama's signature health-care law, Medicare increased accountability on hospitals by withholding payments to facilities that had high rates of expensive patient readmissions. Hospitals now are also taking a payment hit for costly infections patients catch while in their care. Partly as a result, the rate of growth in health-care spending has slowed to a low not seen this century.

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 January 2011, when an article in The New Yorker, "The Hot Spotters," featured him and his work. Television cameras and speaking engagements soon followed, and health-care reformers stepped in with money.

Today, Brenner's Camden Coalition of Healthcare Providers has an annual budget of $6.1 million. It is funded with a mix of public and private grants and uses AmeriCorps service workers to flesh out a staff that now occupies a whole floor of an office building just off the Ben Franklin Bridge.

This is the work the group in Allentown is seeking to replicate.

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 Second Street in Allentown, applied for and received the $1.7 million grant to see how it could apply the lessons of Camden locally. Three much larger regions, San Diego, Aurora, Colo., and Kansas City, Mo., also got shares of the funds, which totaled about $14.3 million.

But the lessons of Camden can go only so far. For one, the populations in the Lehigh Valley and Camden are dissimilar, and while Allentown has more than its share of social problems, it pales compared with Camden, where nearly 39 percent of the population lives below the poverty level.

The partnership also needed to convince St. Luke's, Lehigh Valley Health Network and Sacred Heart Health Network that they should refer their frequent patients and share their data with the team. The data analysis only recently began.

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 Camden project. In that study, the Camden team will measure health status and usage over time between randomly selected patients in the program and similar patients who were not. Then they should be able to determine if it's possible to change the behavior of chronically ill people like Bolster, improve their health and spend less.

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 Mark Lewis.

Mark Lewis

The shades were drawn in the room in Lehigh Valley Hospital-Muhlenberg, where patient Mark Lewis lay on one side of the bed, clutching a pillow. His voice was barely audible to visitors who had come to check on his health following a dialysis treatment.

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 Dieruff High School and played some football, but dropped out and developed a minor criminal record. His family life was fractured. His mother suffered a severe stroke.

When he was 19, Lewis said his eyesight began faltering. He vomited nightly and had "crazy" headaches. He went to Sacred Heart Hospital in Allentown, where he learned his kidneys were failing. Lewis would need dialysis three times a week until he could get a donated kidney.

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 June 28, 2013.

Doctors also would diagnose him with pericarditis, an inflammation of the covering around the heart, said Lisa Cordero, a parish nurse then with the Lehigh Valley super-utilizer team.

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 Rosemary Browne, a former executive at the Highmark Foundation, which also funds the partnership, the bill for this one hospital stay was "in the range of $400,000."

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 Bethlehem for three months of rehabilitation.

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 South Hall Street in Allentown. "She's like another mother to me," Lewis unabashedly said at the time of Cordero.

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 Ronald Cook's case, it came with kidney failure, stroke, drugs, crime and jail. Cook, in an interview last year, said his life had spiraled out of control. He guessed that he entered any one of several local hospitals 15 times in one year.

"I was gone," Cook, 49, said from an Allentown apartment. "I was a walking zombie."

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," Evelyn Kramer, who until recently was a social worker in the Lehigh Valley partnership program, said of Cook. "He was literally living in the living room [at an aunt's house.] He had no privacy. That's what added to his depression at the time."

It's difficult to find treatment for a Medicaid patient for both conditions, Letcher added. That leaves the patient with at best fragmented care, where one hand doesn't know what the other is doing.

Understanding the central link between mental illness and super-utilization, Letcher called in Haven House, an Allentown behavioral health agency. Haven House this year established its first office in the health center where Letcher works.

Now, a patient can schedule an appointment with a doctor and can get immediate attention as well from a mental health-care provider, said Erma Moore, outpatient director for Haven House.

"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. Arthur Caplan, a bioethicist at New York University's Langone Medical Center in New York City. Seeing the same people over and over in the emergency department is "absolutely upsetting" to people who are trying to help.

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. Josh Chisholm, deputy director of a local church-based agency and a key player in the partnership, said people have a hard time believing two opposite things simultaneously — in this case, that providers need to take a "hard line" on patients while simultaneously showing unconditional love to them. But it's a truism in every major religious faith, he said.

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 Mark Lewis from dialysis, Letcher said, illustrated her point. Lewis also needed treatment for depression.

"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.

Next: 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 Allentown Super-Utilizer Partnership: Neighborhood Health Centers of the Lehigh Valley; The Community Exchange; Parish Nursing Coalition of the Greater Lehigh Valley; and POWER, for Pennsylvanians Organized to Witness, Empower and Rebuild.

Photo by Emily Paine/The Morning Call.

This story was originally published in The Morning Call.