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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
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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 or click
here. —DFCI
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