- Beaumont is again managing its pediatric hospice service it sold to an Ohio-based home health company
- Parents of children in the program say they are worried Beaumont might sell or transfer it again
- Beaumont officials say they are seeking partners to expand the program statewide
After less than a year, Beaumont Health has taken back a children's hospice service it sold to Ohio-based Alternate Health Solutions Network after that company told more than 30 families with terminally ill children that it would close the service.
The announcement by Beaumont on Dec. 30 to families in Southeast Michigan ended several weeks of anxiety and confusion.
It's another move for an unprofitable program that helps dozens of families with terminally ill children that has been passed around among four different companies over the past several years.
The parents now worry that Beaumont might not continue what is called the Patch hospice program, although the health system's officials say they are working with other providers to possibly expand it statewide because of the need.
Jessica Hall, who lives in Chesterfield Township, is the mother of Andrew, a 19-year-old who is severely developmentally disabled and has been helped by Patch for many years, the past four with Beaumont. Andrew is terminally ill, blind and has multiple conditions including CHARGE syndrome, a genetic disorder that affects many parts of the body, she said.
"We are extremely worried" about the Patch program ending, Hall said. "We are satisfied with the Beaumont program (the past four years). They have been very supportive. If they close it, it will mean more hospitalizations, more trips to doctor offices, more ambulance trips to Children's (Hospital of Michigan). Nobody else can do it. The Patch team extends life."
Stacey Lotterman, a former Beaumont nurse who lives in Washington Township, has a 4 1/2-year-old son who has been in the Beaumont-led program two years. Holden, who also is terminally ill, has several diagnoses, but the main one is mitochondrial disease, a disorder that affects energy production and creates organ dysfunction in the body.
Still, with assistance, Holden is able to attend a special education program at Macomb Intermediate School District for up to six hours per day. "Sometimes he misses half-days, but the school has a nurse in the building. He has a (tracheostomy) feeding tube. The nurse knows how to take care of him," Lotterman said.
Similar to the other children in the Patch program, Lotterman has a team of caregivers that regularly visit the home to treat Holden. Nurses are on call 24-7 for emergencies, she said.
Once a week, a nurse, physical and occupational therapists, and a social worker visit Holden. A chaplain also is available, along with a respite worker who helps out from time to time, giving the family time off, Lotterman said.
"Our social worker is totally amazing. She helps with resources and worked with us for a year with state paperwork," Lotterman said. "Holden sees seven doctors and she helps (manage) the bills. One of our children has more anxiety about Holden. She sat down with him one afternoon and talked it over."
Susan Grant, R.N., Beaumont's chief nursing officer, confirmed Beaumont will transition Alternate's Patch employees back to Beaumont. She said Beaumont recognizes Patch hospice provides much-needed services to families.
"Managing pediatric patients requires specialized care and expertise," Grant said in an email to Crain's. "(Alternate) does not typically provide care for pediatric patients and ultimately decided it was unable to continue supporting the Patch program."
While Grant said there are no plans to transition the program elsewhere, she said Beaumont is talking with other hospice, palliative and home-care providers across Michigan "to find a more comprehensive solution." She did not name specific providers.
Grant added that Beaumont "would also like to work in partnership with families going forward to help create solutions to serve families who might need these kinds of services across the state of Michigan." She added: "We are reaching out to multiple health systems, hospitals and organizations across the state. It will require a team effort to meet the need for these kinds of services in Michigan."
Last January, it was a different story.
In a move criticized by parents and employees, eight-hospital Beaumont Health sold a 90 percent majority share of Beaumont Home Health and transferred operations of its seven-county home health and hospice agency to Alternate Solutions Health Network, a Kettering, Ohio-based for-profit home health company. The new joint venture company is called Beaumont Home Health and Hospice LLC and once contained the pediatric hospice program.
Two former Beaumont nurses who are familiar with the Patch program told Crain's that Alternate never wanted to take on pediatric hospice because the company had no experience in the services and understood it was not a profitable enterprise. However, it agreed to take the program to close the deal.
Last July, Alternate began plans to exit pediatric hospice and Beaumont began searching for ways to keep the program going. Alternate was unavailable for comment.
"We work with very sick children," said one Beaumont pediatric hospice employee, who asked for anonymity. "It never was a good fit with Alternate. They kept the service going as best they could to serve the families, but the last few months (of 2019) several (providers) left and they didn't replace them. They knew they were exiting."
The Patch program, which stands for Palliative Team and Children's Hospice, has been managed by Beaumont since April 2016 and is headed by Jeanne Lewandowski, M.D., a hospice and palliative care physician affiliated with Beaumont.
Before Beaumont, the pediatric hospice program was part of Henry Ford Health System and operated as "Kaleidoscope Kids" until October 2014 and headed up by Nadia Tremonti, M.D., a Wayne State and Children's Hospital pediatrician.
It was then transferred to the former Ascension St. John Providence Health System as part of the home health program "Walk with Me." The St. John program was consolidated into Reverence Home and Hospice, which is an Ascension Health subsidiary, before becoming a Beaumont program.
Beaumont managed the program until the Alternative Health deal in late December 2018.
Barry Cargill, president of Michigan Home Health and Hospice, said few providers besides Beaumont offer pediatric home health, palliative care or hospice programs.
Most children or young adults are under pediatric palliative care programs, he said. For both children and adults, hospice care is aimed at those with six months or less to live. Palliative care seeks to ease symptoms for those expected to live longer.
"It is very difficult for a parent to put their child into hospice. Oftentimes it is done under palliative services. Every hospice has done some level of pediatrics," he said. "Others have specialized in it as Beaumont did."
Hospice of Michigan has the only other combination pediatric palliative care and hospice program in Michigan, said Michael Paletta, M.D., HOM's vice president for medical affairs. He said HOM offered to take on some of Beaumont's patients, if they met admission criteria.
"We heard Beaumont was taking the pediatric program out of the joint venture (with Alternate) even as they leave the adult hospice program in place (with Alternate)," Paletta said. "We were in talks with Beaumont last summer, but we are not talking about partnering with them."
On the other hand, Paletta said HOM offered if there were families in need of pediatric palliative care or hospice care, "we would be willing to assess those families with care planning and maybe admit them into our program or maybe look at another model of care."
HOM has between 20 to 25 children in its pediatric home health program, the majority in hospice care, he said. HOM also has partnerships with the University of Michigan C.S. Mott Children's Hospital and Spectrum Health's Helen DeVos Children's Hospital in western Michigan.
"We have the ability to do pediatric palliative care" in northwestern Upper Michigan, he said.
While Paletta acknowledged that pediatric palliative and hospice care are not profitable enterprises, HOM considers it part of its mission as a nonprofit agency. He said HOM supplements reimbursement with charitable donations and grants.
"Hospice care is when a child is gravely ill and the end of life is foreseeable," he said, adding: "Many children have significant health problems from birth on and require a lot of medical services and specialized equipment. The prognosis could be short, a few weeks or a month, or it could be longer. The general notion of palliative care is based on individual patient need."
Last December, Hall, Lotterman and about 10 other parents in the program formed an advocacy group when they realized Alternate was going to end the Patch hospice program.
"After Beaumont decided to take back the program, they sent us a letter (on Dec. 30). We are thankful, but we don't know what to think. We don't know what they are planning," Hall said. "They did tell us they didn't understand the level of support the Patch team played" in our lives "and wanted to ensure it continues."
Hall said her son Andrew has multiple congenital anomalies and is on a ventilator 14 hours each night. Along with husband Christopher, the Halls have hired part-time private duty nursing to supplement their own care. The couple also has two other children, ages 10 and 13.
"Andrew is home-schooled now," Hall said. "He used to go to (Macomb County public school) but in 2012 he had spinal fusion and gets pressure sores if he sits too long."
Lotterman's pregnancy with Holden was normal and the couple did not know for some time that he had the mitochondrial disorder. "He will die from the disease and complications. There is no time estimate. It is making his brain shrink. The last year he hasn't been doing well," said Lotterman, who had to resign her nursing job at Beaumont Hospital Troy last summer to take more care of him.
"He is non-verbal and is wheelchair-bound. He can babble a little. We like to believe he can't express his feelings. He is legally blind, too. He responds to voice and touch," Lotterman said. "When the (other three) kids come home from school and hears their voices, he smiles."
Contact: [email protected]; (313) 446-0325; @jaybgreene
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