Prince Jackson, Circle of Life nurse, Naimah Campbell, and his mother, Kpenah, sit outside the Jackson’s Newark, N.J. home. (Matt Rainey/KHN)

NEWARK, N.J. 聳 Fourteen-year-old Prince Jackson made a fist and banged his hand on his head, again and again. “It was like this,” he said, trying to describe the blinding pain from the tumor growing inside his head. “It hurt so much. It wouldn’t stop.”

Jackson could not read or sleep or even watch television. Then he and his mother, who are Liberian refugees living in Newark, were visited by Shelia Walsh, a nurse from a local nonprofit program that helps seriously ill and dying children. “We helped him get the medicine he needed to reduce the swelling and the pain,” she said. “He was finally able to sleep through the night.”

Circle of Life Children’s Center stepped in earlier this year because public and private insurance plans generally do not cover hospice and palliative care services for seriously ill children who do not meet strict criteria, such as having just six months to live. Prince, for instance, has a good prognosis after receiving radiation treatment.

But changes are occurring. New models of care similar to hospice but not limited to children who are dying have emerged in a handful of states, and many more are moving in that direction. The programs provide services for a broader range of severely ill children, such as those with congenital defects, muscular dystrophy, HIV/AIDS, massive burns or serious brain damage from car accidents and near-drownings.

Medicaid, the state-federal health program for the poor and disabled, is paying for services in an increasing number of states, among them Florida, California and Colorado. States that obtain federal permission to use Medicaid funds must demonstrate that the programs won’t add to costs. While advocates insist these initiatives can save money, not everyone is convinced. In New Jersey, officials are not seeking Medicaid coverage because of “financial constraints,” a spokesman said.

“Hospice is a philosophy of community-based care that supports the entire family, medically, socially and spiritually,” said Lori Butterworth, co-director of the Children’s Hospice and Palliative Care Coalition in California. “We’ve created a new service model to meet the needs of children.”

Hospice was created with adult cancer patients in mind, and experts say the traditional approach does not work well for children, even when the prognosis is dire. “No parent will give up a chance to cure their children in order to get more services,” Butterworth said.

Private insurance programs generally follow the same rules as Medicaid and Medicare, the federal health program for the elderly and disabled, requiring a six-months-to-live diagnosis and no curative treatment. “But we are seeing a trend toward health plans looking for innovation in this area,” said Robert Zirkelbach, a spokesman for America’s Health Insurance Plans, a trade group in Washington.

“Some plans are allowing people on hospice to still get curative treatment. There’s been a lot of focus on improving communication to help informed decision-making before the end stages.”

Supporters say intensive support provided by the programs can reduce hospitalizations, trips to the emergency room and futile care at the end of life. Colorado’s program saves Medicaid $15,000 to $20,000 each year for each child by reducing emergency room visits and hospitalizations, according to Brian Greffe, medical director of the Butterfly Program, a pediatric palliative hospice care program at The Children’s Hospital in Denver. The family can call on a nurse to intervene before a problem leads to a trip to the emergency department, he said. In addition to savings, Greffe said children and their families benefit.

“You need someone to pull the whole picture together,” Greffe said. “Or you risk having a child die in the ICU instead of at home, or a child getting chemotherapy at the end when they don’t need it. The child’s death will be more peaceful and the family does better.”

The parents of Rihanna Leone faced wrenching decisions about treatment after she was born last year in Newark with birth complications, including severe brain damage. She could not eat and barely moved.

Circle of Life met the parents shortly after the birth. “We listened to the family,” Walsh said, “and helped them understand all that was going on.”

The parents eventually decided against further hospitalization or risky surgeries when they understood the outcome for Rihanna would not change. Circle of Life helped them take the baby home, where she briefly improved before dying in January at the age of five months. “We were happy with her those last two months,” said the child’s mother, Lilian Carchipulla.

Florida has the longest-running program, which began in 2005. It has served hundreds of children and won the support of a vast majority of parents, according to a study last November in the Journal of Palliative Care.

“Children don’t die when you expect,” said Charlotte Curtis, director of the Florida program. “Sometimes they leave sooner or they live for years. We found their needs were not being met.”

The financial impact on Medicaid is still being calculated, according to Ann Armstrong-Dailey, who is director of Children’s Hospice International and has been leading the efforts to create these programs. More than 20 states are in some stage of seeking permission for Medicaid coverage. Rep. Jim Moran, D-Va., has introduced legislation that would allow states to skip the lengthy approval process, which can take years.

Prince Jackson, meanwhile, is doing much better. Circle of Life has helped him and his mother, Kpenah obtain food and keep their electricity on. His most recent scans show no signs of the brain tumor.

“I remember I was afraid to go to sleep. That I’m going to die and not see the next day,” Jackson said in a soft voice. “I would keep praying to be brave.”

“Now,” he said, “I think my future will be good.”

This <a target="_blank" href="/health-industry/childrens-hospice/">article</a&gt; first appeared on <a target="_blank" href="">麻豆女优 Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

This story is a collaboration between Kaiser Health News and .

Emergency room doctors noticed the difference. Many of their “super user” patients weren’t coming around much anymore.

These troubled people, struggling with chronic illness – and often with homelessness and addiction – routinely appeared at Camden hospitals, racking up huge bills and straining already crowded emergency rooms.

One person was seen at a local ER 324 times over five years. Another sought emergency care 115 times in a single year. Yet another racked up $3.5 million in hospital bills, paid by Medicaid and Medicare, from 2002 to 2007.

Then last year a pilot program employing a nurse practitioner, a social worker, and a community health worker began closely following these top users – even tracking them down in homeless shelters to help find them places to live. The team made sure patients checked their blood sugar, if necessary, and took their medications.

Early data show promising results: a significant reduction in ER visits, and huge savings. The effort could become a model for other cities.

Hospital executives around the nation are grappling with the same problem, and scattered initiatives are emerging to deal with it. Thomas Jefferson University Hospital in Philadelphia has joined with outside groups that help the homeless, especially those with both mental and chronic illness.

“The overutilization of the ER is a huge problem,” said Richard Wender, chairman of the hospital’s department of family and community medicine. “It’s a problem in Camden, in Philadelphia, in rural areas, and in every large city. Our programs here are not as advanced as the work in Camden, but we are trying to learn their lessons and apply them here.”

The program run by the Camden Coalition of Healthcare Providers is the brainchild of Camden physician Jeffrey C. Brenner, whose goal was to strengthen the city’s primary care.

“We hear all these negative comments about these people, that they just want to go to the ER,” Brenner said. “No one wants to go to the ER. We’ve demonstrated that if you give people alternatives, they will stop going to the ER.

“We can lower costs and improve care.”

His team intervened in the lives of 35 patients who together ran up $1.2 million in hospital charges each month. As a result, the group’s total ER and hospital admissions fell from a monthly average of 61 to 37, cutting the bills in half, to $531,000.

The effort costs about $300,000 a year, far less than it saved tax-funded programs such as Medicare and Medicaid and the hospitals. Funding comes from the Robert Wood Johnson Foundation.

ER doctors did not need to see the numbers to recognize something had changed.

“We always knew we had these frequent-flier patients,” said Anthony J. Mazzarelli, medical director of the Cooper University Hospital emergency department in Camden. “I remember one patient we used to see all the time. He had diabetes, liver problems, and some mild psychiatric issues. The coalition got him and began coordinating his care. Now when I see him I think, ‘Wow. Where’s he been?’ “

The coalition began with a citywide examination of exactly who uses the emergency room and why – and a striking portrait of top users emerged. These aren’t people who show up with earaches or viruses because they have no personal physician. Rather, they usually have complicated problems and lack the emotional or financial wherewithal to fill prescriptions or make doctor appointments. So they get sick, and end up in the ER – again and again.

One day this winter, the team went to visit Paul, 52, a cocaine abuser and smoker who suffers from asthma, cardiac disease, and high blood pressure. In the last year, Paul, who asked that his last name not be used, had been to Cooper’s ER four times and to Our Lady of Lourdes’ ER once. He ended up in Cooper’s cardiac unit for more than a week in early January.

Mae King, the team’s social worker, met Paul there and got him into a drug treatment center in a local rowhouse.

He wasn’t feeling well when the team caught up to him there. Gospel music streamed from the kitchen as Paul, hunched over on a couch, explained what was wrong: “I know my blood pressure is way up.”

Kathleen Jackson, a nurse practitioner, checked Paul’s vital signs and went through the bottles of medicine and inhalers he kept in a plastic grocery bag. Did he need a ride to his next doctor’s appointment? she asked. Where will he fill his prescriptions?

On any given day, team members might search a train depot for a homeless alcoholic with diabetes, or visit a heart patient in a retirement high-rise who routinely calls the ambulance. Sometimes the assistance isn’t just medical. It’s helping someone apply for disability, or get back in touch with estranged family members.

“What they are doing in Camden could lead the way,” said William J. Oetgen, a professor of medicine at Georgetown University School of Medicine in Washington.

One program just beginning in Washington and Baltimore uses EMS workers to identify frequent ambulance users, said Bill Frohna, vice chairman of Washington Hospital Center’s department of emergency medicine. Social workers then help these patients find clinics or physicians to follow their care.

In San Francisco, where the University of California uses nurses and social workers to treat high-frequency ER patients, organizers estimate that each dollar spent saves $1.44 in hospital costs.

The Camden study is the first to examine emergency use throughout an entire U.S. city and across multiple hospitals, health experts said. Brenner persuaded three competing hospitals to share information from more than 380,000 hospital and ER admissions from 2002 to 2007.

The data showed that 1 percent of the patients, or just over 1,000, accounted for nearly 40,000 hospital and ER visits over five years. The cost to treat them over five years was $46 million.

Redirecting super users will not eliminate overcrowding in the nation’s ERs, but it will help, said Alfred Sacchetti, chief of emergency services at Our Lady of Lourdes.

“If you have even three or four patients who come three or four times a week, it dramatically impacts your ability to treat other patients. [They] take up the time of doctors, nurses, laboratories, blood services, everything,” he said.

George DiMattesa is a good example. He said he went to the ER about 30 times last year, mostly for pain from cirrhosis of his liver caused by decades of drinking. “I had nowhere else to go,” he said. But since getting involved with the team, DiMattesa, 55, has not been back to the hospital.

He lives in a shelter, but will soon move to an apartment with another shelter resident, Joe Serpico, 58, a former bus driver who lost his vision from cataracts and was forced to stop working.

The team helped Serpico arrange surgery and soon he should be able to see again. Serpico, who jokingly calls DiMattesa his “seeing eye person,” is thrilled.

“They should erect a statue for Mae!” Serpico said.

“We’re a team,” King countered.

Not every client responds. Some continue to live in the streets, and end up in the ER with bumps and bruises from falls and fights or from the complications of untreated chronic illness.

Brenner expects to publish his data when the coalition has followed enough patients for an entire year. He’s been talking to New Jersey officials about creating similar programs in Atlantic City, Trenton, and Newark.

Brenner, a professor at the UMDNJ-Robert Wood Johnson Medical School in New Brunswick, said the coalition’s model of a “medical home without walls,” as he calls it, could be valuable for other groups, such as chronically ill elderly people. Right now, though, the coalition is starting with what he describes as the “worst of the worst” cases to manage.

He described a man in his 50s, morbidly obese and living in a welfare hotel. He had an infected gallbladder, heart failure, and diabetes. He ended up in an intensive care unit for two months. The team helped him get sober and found him an apartment. He goes to church now and his medical problems are under control.

The cost of the intervention? “Less than one day in the ICU,” Brenner said.

Carol Ann Campbell, a former health columnist at the Star-Ledger of Newark, can be reached at carolnews@verizon.net.

This <a target="_blank" href="/health-industry/er-super-users/">article</a&gt; first appeared on <a target="_blank" href="">麻豆女优 Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

Prince Jackson, Circle of Life nurse, Naimah Campbell, and his mother, Kpenah, sit outside the Jackson’s Newark, N.J. home. (Matt Rainey/KHN)

NEWARK, N.J. 聳 Fourteen-year-old Prince Jackson made a fist and banged his hand on his head, again and again. “It was like this,” he said, trying to describe the blinding pain from the tumor growing inside his head. “It hurt so much. It wouldn’t stop.”

Jackson could not read or sleep or even watch television. Then he and his mother, who are Liberian refugees living in Newark, were visited by Shelia Walsh, a nurse from a local nonprofit program that helps seriously ill and dying children. “We helped him get the medicine he needed to reduce the swelling and the pain,” she said. “He was finally able to sleep through the night.”

Circle of Life Children’s Center stepped in earlier this year because public and private insurance plans generally do not cover hospice and palliative care services for seriously ill children who do not meet strict criteria, such as having just six months to live. Prince, for instance, has a good prognosis after receiving radiation treatment.

But changes are occurring. New models of care similar to hospice but not limited to children who are dying have emerged in a handful of states, and many more are moving in that direction. The programs provide services for a broader range of severely ill children, such as those with congenital defects, muscular dystrophy, HIV/AIDS, massive burns or serious brain damage from car accidents and near-drownings.

Medicaid, the state-federal health program for the poor and disabled, is paying for services in an increasing number of states, among them Florida, California and Colorado. States that obtain federal permission to use Medicaid funds must demonstrate that the programs won’t add to costs. While advocates insist these initiatives can save money, not everyone is convinced. In New Jersey, officials are not seeking Medicaid coverage because of “financial constraints,” a spokesman said.

“Hospice is a philosophy of community-based care that supports the entire family, medically, socially and spiritually,” said Lori Butterworth, co-director of the Children’s Hospice and Palliative Care Coalition in California. “We’ve created a new service model to meet the needs of children.”

Hospice was created with adult cancer patients in mind, and experts say the traditional approach does not work well for children, even when the prognosis is dire. “No parent will give up a chance to cure their children in order to get more services,” Butterworth said.

Private insurance programs generally follow the same rules as Medicaid and Medicare, the federal health program for the elderly and disabled, requiring a six-months-to-live diagnosis and no curative treatment. “But we are seeing a trend toward health plans looking for innovation in this area,” said Robert Zirkelbach, a spokesman for America’s Health Insurance Plans, a trade group in Washington.

“Some plans are allowing people on hospice to still get curative treatment. There’s been a lot of focus on improving communication to help informed decision-making before the end stages.”

Supporters say intensive support provided by the programs can reduce hospitalizations, trips to the emergency room and futile care at the end of life. Colorado’s program saves Medicaid $15,000 to $20,000 each year for each child by reducing emergency room visits and hospitalizations, according to Brian Greffe, medical director of the Butterfly Program, a pediatric palliative hospice care program at The Children’s Hospital in Denver. The family can call on a nurse to intervene before a problem leads to a trip to the emergency department, he said. In addition to savings, Greffe said children and their families benefit.

“You need someone to pull the whole picture together,” Greffe said. “Or you risk having a child die in the ICU instead of at home, or a child getting chemotherapy at the end when they don’t need it. The child’s death will be more peaceful and the family does better.”

The parents of Rihanna Leone faced wrenching decisions about treatment after she was born last year in Newark with birth complications, including severe brain damage. She could not eat and barely moved.

Circle of Life met the parents shortly after the birth. “We listened to the family,” Walsh said, “and helped them understand all that was going on.”

The parents eventually decided against further hospitalization or risky surgeries when they understood the outcome for Rihanna would not change. Circle of Life helped them take the baby home, where she briefly improved before dying in January at the age of five months. “We were happy with her those last two months,” said the child’s mother, Lilian Carchipulla.

Florida has the longest-running program, which began in 2005. It has served hundreds of children and won the support of a vast majority of parents, according to a study last November in the Journal of Palliative Care.

“Children don’t die when you expect,” said Charlotte Curtis, director of the Florida program. “Sometimes they leave sooner or they live for years. We found their needs were not being met.”

The financial impact on Medicaid is still being calculated, according to Ann Armstrong-Dailey, who is director of Children’s Hospice International and has been leading the efforts to create these programs. More than 20 states are in some stage of seeking permission for Medicaid coverage. Rep. Jim Moran, D-Va., has introduced legislation that would allow states to skip the lengthy approval process, which can take years.

Prince Jackson, meanwhile, is doing much better. Circle of Life has helped him and his mother, Kpenah obtain food and keep their electricity on. His most recent scans show no signs of the brain tumor.

“I remember I was afraid to go to sleep. That I’m going to die and not see the next day,” Jackson said in a soft voice. “I would keep praying to be brave.”

“Now,” he said, “I think my future will be good.”

This <a target="_blank" href="/health-industry/childrens-hospice/">article</a&gt; first appeared on <a target="_blank" href="">麻豆女优 Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

This story is a collaboration between Kaiser Health News and .

Emergency room doctors noticed the difference. Many of their “super user” patients weren’t coming around much anymore.

These troubled people, struggling with chronic illness – and often with homelessness and addiction – routinely appeared at Camden hospitals, racking up huge bills and straining already crowded emergency rooms.

One person was seen at a local ER 324 times over five years. Another sought emergency care 115 times in a single year. Yet another racked up $3.5 million in hospital bills, paid by Medicaid and Medicare, from 2002 to 2007.

Then last year a pilot program employing a nurse practitioner, a social worker, and a community health worker began closely following these top users – even tracking them down in homeless shelters to help find them places to live. The team made sure patients checked their blood sugar, if necessary, and took their medications.

Early data show promising results: a significant reduction in ER visits, and huge savings. The effort could become a model for other cities.

Hospital executives around the nation are grappling with the same problem, and scattered initiatives are emerging to deal with it. Thomas Jefferson University Hospital in Philadelphia has joined with outside groups that help the homeless, especially those with both mental and chronic illness.

“The overutilization of the ER is a huge problem,” said Richard Wender, chairman of the hospital’s department of family and community medicine. “It’s a problem in Camden, in Philadelphia, in rural areas, and in every large city. Our programs here are not as advanced as the work in Camden, but we are trying to learn their lessons and apply them here.”

The program run by the Camden Coalition of Healthcare Providers is the brainchild of Camden physician Jeffrey C. Brenner, whose goal was to strengthen the city’s primary care.

“We hear all these negative comments about these people, that they just want to go to the ER,” Brenner said. “No one wants to go to the ER. We’ve demonstrated that if you give people alternatives, they will stop going to the ER.

“We can lower costs and improve care.”

His team intervened in the lives of 35 patients who together ran up $1.2 million in hospital charges each month. As a result, the group’s total ER and hospital admissions fell from a monthly average of 61 to 37, cutting the bills in half, to $531,000.

The effort costs about $300,000 a year, far less than it saved tax-funded programs such as Medicare and Medicaid and the hospitals. Funding comes from the Robert Wood Johnson Foundation.

ER doctors did not need to see the numbers to recognize something had changed.

“We always knew we had these frequent-flier patients,” said Anthony J. Mazzarelli, medical director of the Cooper University Hospital emergency department in Camden. “I remember one patient we used to see all the time. He had diabetes, liver problems, and some mild psychiatric issues. The coalition got him and began coordinating his care. Now when I see him I think, ‘Wow. Where’s he been?’ “

The coalition began with a citywide examination of exactly who uses the emergency room and why – and a striking portrait of top users emerged. These aren’t people who show up with earaches or viruses because they have no personal physician. Rather, they usually have complicated problems and lack the emotional or financial wherewithal to fill prescriptions or make doctor appointments. So they get sick, and end up in the ER – again and again.

One day this winter, the team went to visit Paul, 52, a cocaine abuser and smoker who suffers from asthma, cardiac disease, and high blood pressure. In the last year, Paul, who asked that his last name not be used, had been to Cooper’s ER four times and to Our Lady of Lourdes’ ER once. He ended up in Cooper’s cardiac unit for more than a week in early January.

Mae King, the team’s social worker, met Paul there and got him into a drug treatment center in a local rowhouse.

He wasn’t feeling well when the team caught up to him there. Gospel music streamed from the kitchen as Paul, hunched over on a couch, explained what was wrong: “I know my blood pressure is way up.”

Kathleen Jackson, a nurse practitioner, checked Paul’s vital signs and went through the bottles of medicine and inhalers he kept in a plastic grocery bag. Did he need a ride to his next doctor’s appointment? she asked. Where will he fill his prescriptions?

On any given day, team members might search a train depot for a homeless alcoholic with diabetes, or visit a heart patient in a retirement high-rise who routinely calls the ambulance. Sometimes the assistance isn’t just medical. It’s helping someone apply for disability, or get back in touch with estranged family members.

“What they are doing in Camden could lead the way,” said William J. Oetgen, a professor of medicine at Georgetown University School of Medicine in Washington.

One program just beginning in Washington and Baltimore uses EMS workers to identify frequent ambulance users, said Bill Frohna, vice chairman of Washington Hospital Center’s department of emergency medicine. Social workers then help these patients find clinics or physicians to follow their care.

In San Francisco, where the University of California uses nurses and social workers to treat high-frequency ER patients, organizers estimate that each dollar spent saves $1.44 in hospital costs.

The Camden study is the first to examine emergency use throughout an entire U.S. city and across multiple hospitals, health experts said. Brenner persuaded three competing hospitals to share information from more than 380,000 hospital and ER admissions from 2002 to 2007.

The data showed that 1 percent of the patients, or just over 1,000, accounted for nearly 40,000 hospital and ER visits over five years. The cost to treat them over five years was $46 million.

Redirecting super users will not eliminate overcrowding in the nation’s ERs, but it will help, said Alfred Sacchetti, chief of emergency services at Our Lady of Lourdes.

“If you have even three or four patients who come three or four times a week, it dramatically impacts your ability to treat other patients. [They] take up the time of doctors, nurses, laboratories, blood services, everything,” he said.

George DiMattesa is a good example. He said he went to the ER about 30 times last year, mostly for pain from cirrhosis of his liver caused by decades of drinking. “I had nowhere else to go,” he said. But since getting involved with the team, DiMattesa, 55, has not been back to the hospital.

He lives in a shelter, but will soon move to an apartment with another shelter resident, Joe Serpico, 58, a former bus driver who lost his vision from cataracts and was forced to stop working.

The team helped Serpico arrange surgery and soon he should be able to see again. Serpico, who jokingly calls DiMattesa his “seeing eye person,” is thrilled.

“They should erect a statue for Mae!” Serpico said.

“We’re a team,” King countered.

Not every client responds. Some continue to live in the streets, and end up in the ER with bumps and bruises from falls and fights or from the complications of untreated chronic illness.

Brenner expects to publish his data when the coalition has followed enough patients for an entire year. He’s been talking to New Jersey officials about creating similar programs in Atlantic City, Trenton, and Newark.

Brenner, a professor at the UMDNJ-Robert Wood Johnson Medical School in New Brunswick, said the coalition’s model of a “medical home without walls,” as he calls it, could be valuable for other groups, such as chronically ill elderly people. Right now, though, the coalition is starting with what he describes as the “worst of the worst” cases to manage.

He described a man in his 50s, morbidly obese and living in a welfare hotel. He had an infected gallbladder, heart failure, and diabetes. He ended up in an intensive care unit for two months. The team helped him get sober and found him an apartment. He goes to church now and his medical problems are under control.

The cost of the intervention? “Less than one day in the ICU,” Brenner said.

Carol Ann Campbell, a former health columnist at the Star-Ledger of Newark, can be reached at carolnews@verizon.net.

This <a target="_blank" href="/health-industry/er-super-users/">article</a&gt; first appeared on <a target="_blank" href="">麻豆女优 Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">