June 17, 2003
Dana-Farber staff, families attend hearing to advocate for pediatric
palliative care bill
Christine Reilly (left) and Joanne Wolfe, MD, MPH, testify in favor of the pediatric palliative care bill.
Quality end-of-life care is every dying child's right. So spoke Christine Reilly, whose 5-year-old son, Mikey, was a Jimmy Fund Clinic patient who died of cancer in March 1999. She emphasized the point during a public hearing in support of a pediatric palliative care bill held at the Massachusetts State House June 4 — what would have been Mikey's 10th birthday.
The Senate 605/House 1290 legislation would allow patients to have hospice care at home while still receiving standard therapies in the hospital, such as radiation or blood transfusions. It would also enable them to qualify for hospice care without a physician needing to declare a life expectancy.
The hearing before the Joint Committee on Health Care is the first step required for a bill to become law. When originally filed last year as Senate 565, "An Act to Provide Pediatric Palliative Care to Children with Life-Limiting Illnesses in the Commonwealth," the bill passed the Senate Ways and Means Committee but not the House Ways and Means.
Supported by many Dana-Farber patients, families, and staff members, including the Dana-Farber/Children's Hospital Pediatric Advance Care Team (PACT), the measure aims to increase state funding for the care of children and adolescents under age 19 with life-limiting illnesses. Currently, a family must decide to stop treatment altogether in order to qualify for hospice-care coverage. Also, for a child to be eligible for such care, a physician must certify that the patient's life expectancy is not more than six months.
As his mother recounted at the hearing, Mikey Reilly lived as fully and comfortably as possible in his last days by receiving home-health care for his advanced cancer (alveolar rhabdomyoscarcoma, a disease of the connective tissue). Yet, the road was not easy, she explained. "Parents should not be forced to choose between treatment for their child's disease or palliative care," she said. "They should be allowed to concentrate on only one thing: quality time with their child."
Joanne Wolfe, MD, MPH, of Pediatric Oncology and the PACT's director, also testified, citing research that shows young cancer patients can experience tremendous pain and suffering at the end of life. "Parents often hold out hope for a cure at the same time that they hope for comfort," she said, "yet the systems currently in place do not support these dual hopes."
PACT helps children with advanced illness at Dana-Farber and partnering Children's Hospital Boston live as well and as long as they can, and it aids parents in preparing for their child's death. Sometimes care is provided in the "comfort corner," a special room at Children's that allows families to remain together at life's end. In addition, HealthCare Dimensions Hospice — acquired by Dana-Farber in spring 2002 — offers its own unique program, Hospice for Kids.
Also testifying at the hearing were Rigney Cunningham, executive director of the Hospice and Palliative Care Federation of Massachusetts; Kate Faulkner, MD, a pediatric hospice consultant; and Tina Martineau, whose 3-year-old son, Joshua, was a patient at Children's who died last year.
Those interested in helping this bill become law should ask their state senator to support Senate 605 or their state representative to support House 1290. To identify your senator, call the Senate clerk's office at (617) 722-1276; to identify your rep., call (617) 722-2356.
