Mary Carol
24-05-04, 09:29 PM
One-of-a-kind home in northern California follows new thinking on care for the terminally ill
By Mielikki Org
Associated Press
Published May 24, 2004
SAN LEANDRO, Calif. -- Riley Jane Meringer, 8 months old, is bright-eyed, smiling--and dying of a rare cancer.
Her parents, Jamie and Mike Meringer, are devastated. Until recently, they had only two choices when it came to the heartbreaking decision of how and where to care for Riley during her final days.
One was the hospital, with its cold, sterile equipment and memories of painful chemotherapy. The other was home, which would require them to leave work indefinitely to handle the enormous task of caring for their baby by themselves.
Then they found an alternative--apparently the first freestanding hospice for children in the United States, the George Mark Children's House.
About half a million children die in the United States every year from terminal illnesses. Four years ago the American Academy of Pediatrics recommended that comprehensive hospice-like treatment, designed to improve the quality of life for children with life-threatening or terminal illnesses, be made widely available.
When it becomes obvious a child won't recover, the academy wrote, doctors should stop trying to cure them, and instead make their final days more comfortable.
While thousands of hospices focus on dying adults, there are only a handful of palliative services nationwide for children, all administered in hospitals or at home, except for the George Mark House.
More places like this one, set on 5 acres of rolling hills overlooking San Francisco Bay, are needed to fill a gaping hole in a medical system that offers little help for families coping with a severely ill child, says co-founder Kathy Hull, a psychologist.
This home away from home focuses on pain control and symptom management, while still letting kids be kids.
Medical equipment is cleverly hidden behind walls and cupboards covered with murals of fairy tale castles, pirate boats, forests and spaceships.
The eight hospital beds are disguised with bright red and blue comforters, and pull-out daybeds covered with throw pillows and stuffed animals are available in all eight bedrooms so that relatives can always be nearby.
Sunlight-flooded playrooms full of toys and fingerpaints keep children busy. Every week, volunteers come by to visit, play piano and guitar for sing-a-longs in the music room, or prepare home-cooked meals so that families can relax and eat together in the large, cozy dining room.
A 24-hour nursing staff, on-site apartments and non-denominational chapel are also on the premises.
The focus here is on living, not dying.
No one is ever ready for a child to die--especially doctors, who often are reluctant to give up on saving a child, even when, as in Riley's case, a disease shows no sign of retreating.
"A child comes into the hospital and, immediately, the response is that the child can't die," said Betty Davies, a professor at the University of California at San Francisco and chairwoman of its family health-care nursing department.
"We have sometimes focused so much on the cure that we forget there comes a time when all our efforts are not going to succeed. That's really hard to accept."
Since the pediatrics academy published its recommendation four years ago, hospitals including UCSF, where Riley was originally treated, have begun to offer more palliative care services and "comfort care rooms."
But paying for such care also is difficult. Medicare and other insurance programs cover hospices, but most treat a 5-month-old baby the same way they treat an 85-year-old adult. Most cover hospice care only when a patient is given six months or less to live--a tricky diagnosis for a child. Even then, only a fraction of costs are covered.
The privately funded George Mark House, by contrast, absorbs most of the $1,400 per day it spends on each child and places no limit on how long patients can stay. Children are never turned away, nor are parents ever forced to sign a "do not resuscitate" form as required by some insurance companies.
"It is a landmark thing," said Dr. Marcia Levetown, director of palliative care at Methodist Hospital in Houston, who worked on the pediatrics report. "I think it's a missing element that's finally being addressed and I'm really grateful that that's happening."
Hull hopes George Mark, named after two brothers who died, at ages 16 and 30, will provide a model for others. Already, groups in Salt Lake City and New Orleans have consulted about plans for similar facilities.
George Mark already has relieved the strain on Riley's parents. They are able to go to their jobs and tend to their 5-year-old son, Carson, while knowing that Riley is in good hands. Housed in one of the on-site apartments, the Meringers can see and eat with Riley every day, sharing precious time as a family while they still can.
"This is like home," said Jamie Meringer, 32, as she and her husband cradled Riley while sitting in a living room with a fireplace. "It's just beautiful. Now I can just enjoy every day like a gift rather than feeling like there's no one here to help me."
http://www.chicagotribune.com/news/nationworld/chi-0405240053may24,1,4149414.story?coll=chi-newsnationworld-hed
By Mielikki Org
Associated Press
Published May 24, 2004
SAN LEANDRO, Calif. -- Riley Jane Meringer, 8 months old, is bright-eyed, smiling--and dying of a rare cancer.
Her parents, Jamie and Mike Meringer, are devastated. Until recently, they had only two choices when it came to the heartbreaking decision of how and where to care for Riley during her final days.
One was the hospital, with its cold, sterile equipment and memories of painful chemotherapy. The other was home, which would require them to leave work indefinitely to handle the enormous task of caring for their baby by themselves.
Then they found an alternative--apparently the first freestanding hospice for children in the United States, the George Mark Children's House.
About half a million children die in the United States every year from terminal illnesses. Four years ago the American Academy of Pediatrics recommended that comprehensive hospice-like treatment, designed to improve the quality of life for children with life-threatening or terminal illnesses, be made widely available.
When it becomes obvious a child won't recover, the academy wrote, doctors should stop trying to cure them, and instead make their final days more comfortable.
While thousands of hospices focus on dying adults, there are only a handful of palliative services nationwide for children, all administered in hospitals or at home, except for the George Mark House.
More places like this one, set on 5 acres of rolling hills overlooking San Francisco Bay, are needed to fill a gaping hole in a medical system that offers little help for families coping with a severely ill child, says co-founder Kathy Hull, a psychologist.
This home away from home focuses on pain control and symptom management, while still letting kids be kids.
Medical equipment is cleverly hidden behind walls and cupboards covered with murals of fairy tale castles, pirate boats, forests and spaceships.
The eight hospital beds are disguised with bright red and blue comforters, and pull-out daybeds covered with throw pillows and stuffed animals are available in all eight bedrooms so that relatives can always be nearby.
Sunlight-flooded playrooms full of toys and fingerpaints keep children busy. Every week, volunteers come by to visit, play piano and guitar for sing-a-longs in the music room, or prepare home-cooked meals so that families can relax and eat together in the large, cozy dining room.
A 24-hour nursing staff, on-site apartments and non-denominational chapel are also on the premises.
The focus here is on living, not dying.
No one is ever ready for a child to die--especially doctors, who often are reluctant to give up on saving a child, even when, as in Riley's case, a disease shows no sign of retreating.
"A child comes into the hospital and, immediately, the response is that the child can't die," said Betty Davies, a professor at the University of California at San Francisco and chairwoman of its family health-care nursing department.
"We have sometimes focused so much on the cure that we forget there comes a time when all our efforts are not going to succeed. That's really hard to accept."
Since the pediatrics academy published its recommendation four years ago, hospitals including UCSF, where Riley was originally treated, have begun to offer more palliative care services and "comfort care rooms."
But paying for such care also is difficult. Medicare and other insurance programs cover hospices, but most treat a 5-month-old baby the same way they treat an 85-year-old adult. Most cover hospice care only when a patient is given six months or less to live--a tricky diagnosis for a child. Even then, only a fraction of costs are covered.
The privately funded George Mark House, by contrast, absorbs most of the $1,400 per day it spends on each child and places no limit on how long patients can stay. Children are never turned away, nor are parents ever forced to sign a "do not resuscitate" form as required by some insurance companies.
"It is a landmark thing," said Dr. Marcia Levetown, director of palliative care at Methodist Hospital in Houston, who worked on the pediatrics report. "I think it's a missing element that's finally being addressed and I'm really grateful that that's happening."
Hull hopes George Mark, named after two brothers who died, at ages 16 and 30, will provide a model for others. Already, groups in Salt Lake City and New Orleans have consulted about plans for similar facilities.
George Mark already has relieved the strain on Riley's parents. They are able to go to their jobs and tend to their 5-year-old son, Carson, while knowing that Riley is in good hands. Housed in one of the on-site apartments, the Meringers can see and eat with Riley every day, sharing precious time as a family while they still can.
"This is like home," said Jamie Meringer, 32, as she and her husband cradled Riley while sitting in a living room with a fireplace. "It's just beautiful. Now I can just enjoy every day like a gift rather than feeling like there's no one here to help me."
http://www.chicagotribune.com/news/nationworld/chi-0405240053may24,1,4149414.story?coll=chi-newsnationworld-hed