Grace, Courage and Dignity: CompassionNet marks 10 years in upstate New York

ROCHESTER, NY (11/01/2011)(readMedia)-- CompassionNet, a unique pediatric palliative care program that has served more than 1,000 families, marks its 10th anniversary Nov. 1 with the release of a commemorative book. The book includes four true stories of upstate New Yorkers facing medical crises with grace, courage and dignity.

Excellus BlueCross BlueShield offers the unusual program of all-inclusive care to its members; its affiliate, Lifetime Care Home Health and Hospice, administers CompassionNet to families in Central and Western New York.

"Our program treats the child and the family as one, addressing the child's medical and nonmedical needs across multiple disciplines. We cover additional services, equipment and supplies in full," said David Klein, Excellus BlueCross BlueShield chief executive officer. The child does not require a diagnosis of a terminal disease to participate in the program.

"CompassionNet gives families what they need without the added stress of worrying about whether it will be covered by their health insurance," said Pat Heffernan, Lifetime Care president.

Families in the program have access to a CompassionNet pediatric palliative care medical team, including a registered nurse, pediatric nurse practitioner and a certified palliative care pediatrician. The team works with community organizations to help meet other unmet needs of all family members.

Services include a case manager authorized to arrange for and approve services, even if they're typically not covered by health insurance.

"Excellus BlueCross BlueShield is committed to providing help to the family early on in a child's diagnosis," Klein said. "The depth and breadth of services that CompassionNet provides was virtually unheard of among health insurance companies 10 years ago and even today."

Initially offered to families in the Rochester area, the program has grown to embrace families across upstate New York.

CompassionNet got its start 10 years ago when Lifetime Care staff experienced firsthand the lack of services for seriously ill children as they cared for an Excellus BlueCross BlueShield employee's child who had a fatal brain tumor. With support from Excellus BlueCross BlueShield, Heffernan set out to design a program that would address the physical, emotional, psychosocial and spiritual needs of seriously ill children and their families.

Researching and visiting special palliative care programs across the country, Heffernan and Lifetime Care staff found that:

• Parents reported that their family crisis began at the time of diagnosis – not when treatment failed or when a terminal prognosis was given or recognized.

• The prevailing medical model of care did not provide the full range of services and support that families needed.

• Parents often rejected hospice as an option – even when a child was dying – because they feared it meant "giving up."

In developing the program, a task force led by Lifetime Care sought input from bereaved parents; administrators and providers from Golisano Children's Hospital in Rochester; staff and volunteers from nonprofit organizations that serve sick children; and respected community pediatricians.

Based on these findings, Lifetime Care worked with Excellus BCBS to develop a health insurance benefit that would provide families with extra support. However, it became clear that each child's situation was unique and that an insurance benefit could never be written to meet each family's needs, recalled Heffernan.

"To help the children live normal lives and assist with their pain and symptom management, CompassionNet evolved to allow coverage for alternative procedures and services that fit the individual needs of each patient and his or her family," she said.

"We feel honored to have played a part in the lives of these families," said Heffernan. "Their stories are truly inspirational and a tribute to the human spirit, resilience and love."

Klein added, "The assistance of the medical community and numerous nonprofit organizations devoted to helping sick children and their families helps to extend CompassionNet's net of care.

"The anniversary booklet is a tribute to them and to everyone who has been touched by or involved in CompassionNet," he said, "including our hard-working CompassionNet staff, the leadership of Lifetime Care and Excellus BlueCross BlueShield who had the vision and commitment to develop and continue the program, and especially to the children and families we've served and those we continue to help."

To view the 10th anniversary CompassionNet commemorative book, click here or visit https://www.excellusbcbs.com/wps/portal/xl/our/news/caringcommunity/

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Excellus BlueCross BlueShield, a nonprofit independent licensee of the BlueCross BlueShield Association, is part of a family of companies that finances and delivers vital health care services to 1.8 million people across upstate New York. Excellus BlueCross BlueShield provides access to high-quality, affordable health coverage, including valuable health-related resources that our members use every day, such as cost-saving prescription drug discounts and wellness tracking tools in our Step Up program. To learn more, visit excellusbcbs.com.

Lifetime Care Home Health and Hospice is the Rochester/Finger Lakes region's leading provider of home care, hospice and palliative care services at home and in home-like settings. Lifetime Care delivers compassionate, personalized care to adults and children who are ill, injured, dying, or grieving; and provides education that promotes healing, wellness and holistic care for children and adults. Lifetime Care is a non-profit organization recognized by the IRS as a § 501-C-3 public charity. For more information, visit www.lifetimecare.org .