The
International
Heartsongs
Project

’Palliative care’ means
more than ‘end-of-life’ care
for children and families
coping with muscle disease

by Amy Labbe

Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too.

Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.

Although the term “palliative care” traditionally is associated with hospice or end-of-life care, it takes on new meaning when applied to children with muscle diseases, says MDA Vice President of Advocacy Annie Kennedy.

For these children, Kennedy says, “ palliative care begins when a child receives a diagnosis, and continues throughout that child’s life, regardless of any treatment received.”

Pediatric palliative care seeks to address not only the child’s comfort and quality of life, but also medical communication, decision making, access to resources, and the family’s emotional needs.

Says Kennedy, “One of the greatest services MDA can provide is to connect the families we serve to valuable resources. We want to expand and extend

the palliative care services available to our families — focusing on ‘quality of life,’ not ‘end of life.’”

An international effort

While some fields, such as oncology (cancer care), do provide pediatric palliative care, it’s a new idea in the care of children with muscle diseases.

But that’s changing, not only in the U.S., but around the world.

MDA’s palliative care program is part of the International Heartsongs Project, a collaboration among seven countries to improve services for children and families affected by pediatric neuromuscular diseases, particularly Duchenne muscular dystrophy (DMD) and type 1 spinal muscular atrophy (SMA1). The project was named in honor of former MDA National Goodwill Ambassador Mattie Stepanek (see page 57).

Heartsongs was conceived as an international project, funded by the Stavros Niarchos Foundation and co-directed by Gail Geller and Cynda Rushton from the Johns Hopkins Berman Institute of Bioethics.

The participating countries — Australia, Canada, Denmark, France, Greece, United Kingdom and the United States — all have active muscular dystrophy organizations with a readiness to integrate palliative care into their programs, says Geller.

The aim of the international project, she explains, is “to marry two worlds — the muscular dystrophy community and pediatric palliative care programs — by bringing together the active partnership and voices of interdisciplinary professionals, palliative care professionals, parents and children.”

Redefining palliative care

A palliative care program for children with muscular dystrophy, “says nothing about when, or even whether, the child will die,” Geller says.

“It simply says that since there’s a possibility the child might have a life-threatening or life-limiting experience, they can benefit from these services at any time, and these services ought to be woven into their overall care early on before it becomes a crisis issue.”