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Pediatric Palliative Care Coalition Plans November Conference
by Nancy Kennedy

Scott Maurer, M.D.The loss of a child is an unspeakable tragedy. Parents and families who endure this most profound of losses have enormous needs, for emotional support, information, guidance and compassion. Their often overwhelming needs are best met by professionals who specialize in pediatric palliative and hospice care – physicians, nurses, social workers, chaplains and others who have dedicated themselves to providing this extraordinarily humane, comprehensive and personalized care to children with life-limiting conditions.

Prominent among these professionals in this region is Scott Maurer, M.D., a board-certified pediatric hospice and palliative medicine specialist at Children's Hospital of Pittsburgh who also serves as the Medical Director of the Supportive Care Team. Every day, Dr. Maurer and his colleagues offer parents and families their superb clinical expertise along with their humanity, walking with them on a journey that no parent ever expects to take. "In pediatric palliative care, we are constantly aware of the enormity of the parent's loss and grief," Dr. Maurer says. "One of our most important roles is to support them as good parents to their dying child. We help them with the difficult decisions and support them as advocates for their child."

It's a tall order. Pediatric palliative and hospice care is unique even within the specialty of palliative care – because of the youth of the patients, the goal is to both prolong life and assure the highest possible quality of life, goals which are not easily compatible at times. It requires meticulous management of symptoms, goal setting and planning, empathy and the capacity to respond to a wide range of emotions, on a daily basis. Even for the most experienced, it's a demanding field, and those who choose to practice it have needs of their own, for support, empathy and ongoing education.

Supporting pediatric palliative care providers is one of the goals of Pennsylvania's Pediatric Palliative Care Coalition (PPCC). PPCC is a statewide, grass-roots collaborative jointly developed by the Pennsylvania Children's Hospice and Palliative Care Coalition and Helping Hands – Healing Hearts, a volunteer program initiated in 2004 by Fox Chapel Presbyterian Church in Pittsburgh as their Jubilee Mission Project. These two visionary, dedicated organizations combined their resources in order to create PPCC and achieve their shared goal of improving quality of life for children in Pennsylvania with life-limiting conditions. In the U.S., over 50,000 children die every year from cancer, congenital conditions and other serious diseases, but only a small percentage actually receive hospice or palliative care. "Children are absolutely an underserved population in terms of availability and quality of palliative care services," says Dr. Maurer. "Many pediatricians are reluctant to consult palliative care, for fear that it looks like they are throwing in the towel. Children who live in rural areas may not have access to quality hospice providers or even home care providers with pediatric expertise."

PPCC is part of a national movement to address this deficiency, says Executive Director Betsy Hawley, and towards that goal, the organization will hold its first statewide conference in November, bringing much needed attention to the unique and significant role of hospice and palliative care in the lives of children and families who are living with medically complex and life-limiting conditions. The one-day conference will take place in Harrisburg on November 5, 2015 and is intended for health care professionals, families, volunteers and others who are invested in promoting and improving pediatric hospice and palliative care services throughout Pennsylvania and surrounding states.

The conference features a number of dynamic, expert speakers who will present in-depth discussion of issues relating to the quality and availability of hospice and palliative care to children. The keynote speaker is Dr. Maurer, who will address decision-making support for families. Special Guest speaker Leesa M. Allen, Deputy Secretary, Pennsylvania Department of Human Services, Office of Medical Assistance Programs, will discuss the Affordable Care Act's concurrent care for children requirement. At the afternoon luncheon buffet, each table will have an expert seated with the participants, to lead small group discussions and answer individual questions.

A highlight of the conference promises to be the after-lunch presentation of the one-hour film, The Magic Bracelet. The film was written by 15-year old Rina Goldberg, who died of mitochondrial disease before it was completed; the screenplay has been adapted by Diablo Cody, well known as the Oscar-winning writer of the acclaimed 2008 film Juno. Directed by Jon Poll (Meet the Fockers), the film will be followed by a discussion with Rina's parents, Stacy and Ari Goldberg, about their daughter's life and legacy.

Other sessions will focus on ethical issues in pediatric palliative care; communicating about death and dying with families and children; and easing transitions among various settings as the child and family navigate the continuum of medical and social services.

"This conference will be an enlightening and moving experience," Dr. Maurer says. "PPCC is having a positive impact across the state in improving the quality and availability of palliative and hospice care for children and families, through efforts such as this conference. Thanks to PPCC, the medical community is paying greater attention to this issue. Pennsylvania now has three comprehensive pediatric palliative care programs, in Pittsburgh, Philadelphia and Hershey. PPCC is raising public awareness, educating healthcare professionals, advocating for families and making a difference."

To register, learn more about the conference, or arrange to exhibit/sponsor, visit www.ppcc-pa.org or call (412) 963-8243

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