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09.05.03

Staff, families advocate for end-of-life care
 

Parent Christine Reilly (left) and Joanne Wolfe, MD, MPH, testify on June 4 in favor of the pediatric palliative care bill.

uality end-of-life care is every dying child’s right. So spoke Christine Reilly, whose 5-year-old son, Mikey, was a Children’s and 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 on June 4—what would have been Mikey’s 10th birthday.

The 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. 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. 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.”

The hearing before the Joint Committee on Health Care was the first step in the legislative process. In July, the committee reported favorably on the bill and referred it to the Senate Ways and Means Committee, which will consider funding. Although its cost is relatively low at about $850,000, the bill failed to pass the House Ways and Means Committee when it was originally filed last year.

“Parents often hope for a cure at the same time that they hope for comfort, yet the systems currently in place do not support these dual hopes.” —Joanne Wolfe, MD, MPH

Supported by many 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.

Joanne Wolfe, MD, MPH, assistant in Hematology/Oncology and the PACT’s medical 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 Children’s and partnering Dana-Farber to 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, Dana-Farber offers its own unique program, Hospice for Kids.

To help this bill become law, contact your state senator and representative and ask them to support the palliative care bill (Senate 605/House 1290). To identify your senator, call (617) 722-1276. To identify your representative, call (617) 722-2356. You may also visit http://www.state.ma.us/legis. —DFCI

This story by Christine Cleary, patient/family communications manager at Dana-Farber Cancer Institute, appeared in the June 10 issue of Dana-Farber’s staff newspaper, Inside the Institute.