Ending a painful choice
Program melds hospice, medical care for children
A year ago, Holly Poirier would have had to refuse chemotherapy for her son in order to get the free counseling, massage, and baby-sitting that is helping them cope with his life-threatening brain tumor.
Like most parents, Poirier wouldn't even have considered making that trade-off.
"I want to try every last option . . . until the end," she said last week, as she cradled 3-year-old Owyn Tyler Law in her lap.
Now, Massachusetts families no longer face that painful choice.
The state is blazing a path that melds the latest medical treatments with emotional and spiritual supports for families of children with life-limiting illnesses. Massachusetts is one of only three states using this approach, according to Children's Hospice International. The initiative brings government-paid palliative care to the homes of families, without requiring them to meet the strict requirements of end-of-life hospice programs.
"We're trying to improve the quality of life and make the process of going through this type of illness more bearable," said Stewart Landers, who oversees the program at the state Department of Public Health.
More than 80 children have been helped since the program began in January with little public notice. State funding, $800,000 this year, would cover services for about 200, and officials aren't sure if the demand will eventually be much greater than that. The program is open to children 18 and under who have diagnoses that are expected to cut their lives short, including HIV, cystic fibrosis, metabolic diseases, and cancer. Families of all incomes qualify.
Under federal payment rules, which are also followed by many private insurers, patients qualify for hospice only if they have less than six months to live and are willing to give up curative treatments. In most cases, they must also forgo home health services provided by any nonhospice agency.
For children, meeting those rules is difficult, since prognoses are often uncertain and few parents are willing to concede their child is dying or to give up on a possible cure. As a result, very few children get hospice care.
"The new program removes those barriers," said Rigney Cunningham, executive director of the Hospice & Palliative Care Federation of Massachusetts. Services are being provided by 10 of the state's 53 hospice programs.
The program also reflects an acknowledgement that seriously ill children and their families need more support than they typically get, and not only in the last months of the child's life. Lawmakers authorized the program last year as part of the state's health reform law, after lobbying by families, doctors, and hospice officials.
At his home in Dudley, a small town south of Worcester, Owyn tears from room to room with the energy typical of boys his age. Dark circles under his eyes and an undercurrent of anxiety are the only palpable signs of his illness.
Doctors diagnosed the brain tumor about 13 months ago, after Owyn began falling down, sometimes up to 20 times a day, and his speech became slurred. Surgeons removed part of the tumor but couldn't get it all because a portion had grown into his optic nerve and doctors didn't want to endanger his vision. Even with chemotherapy, there is a 66 percent chance the tumor will grow back, Poirier said. The long-term prognosis is far from rosy.
Owyn is in the 50th week of an experimental chemotherapy regime that requires weekly trips to Boston for infusions that can leave him sick for days. At home he receives regular doses of a potent liquid that makes him gag. He battles against both drugs, wearing down Poirier, a single mother who quit her social work job to care for her only child full time.
"He has a ton of anxiety about fear of not coming home from the hospital, about any little change in his routine," Poirier said.
Through the palliative care program, an "expressive therapist" comes to the house to help calm Owyn, using art, music, and movement. Together, they recently sewed a small, scented beanbag pillow that fits over his eyes to help him relax, and a string of red, white, and blue feathers he can blow on to ease tension.
A social worker gives Poirier an outlet for her own frustrations and helps her manage the endless medical appointments. A volunteer comes once a week to babysit Owyn and give Poirier a few-hour break. A massage therapist works on both Poirier and Owyn.
"That was a treat," Poirier said, describing a recent massage, only the third one of her life.
The program, she said, "is definitely a bonus. The services are free, there's no waiting list, and they come to your house."
Families in the program can request help from a chaplain and from nurses who specialize in pain management and emergency services, said Suzanne Azar, a social worker for VNA Care Network & Hospice who Azar oversees palliative care for Poirier and for seven other families in central Massachusetts. Counseling and support are also offered to siblings of sick children. The funding is also helping hospices develop expertise in caring for children. Coincidentally, a private effort is underway to open the first exclusively pediatric hospice in the state. PediPathways is about halfway through the process of federal and state certification, said Melody White, the hospice's founder.
With the new expertise, the palliative care program may find additional ways to help Owyn and others. Lying still on the living room couch last week, his eyes covered with the beanbag, Owyn demonstrated the desired relaxation effect - for about 30 seconds. Then he jumped up and spun around the room with an impish grin.
For more information of the Pediatric Palliative Care program, call 1-800-882-1435. Alice Dembner can be reached at Dembner@globe.com.