It is hard to imagine anything more painful than the death of a child. What parent would not willingly exchange places with their dying child if only they could? As a community, how can we best support children and their families at the end of life? According to Kenneth Zeri, president of Hospice Hawaii, it begins with a discussion about what is most important to the individual with a terminal illness. With training and practice, professionals can skillfully engage patient and family about their values and goals and learn how they want to spend their remaining time. Only when having this discussion in earnest can the health care team develop a care plan specific to the individual. While many people wish to fight on to the very end with all the tools of medical technology, most do not wish to spend their last days in a hospital. The majority would rather stay at home and be with loved ones.

Hospice Hawaii now offers a program specializing in care for terminally ill children and their families. This care goes beyond the child and parents and can include siblings, grandparents, schools and the larger ohana. Children, even in the face of a life-limiting illness, want to live as normal a life as possible. It is a priority for pediatric hospice care to develop an emotional environment in which child and family can do so.

The team also coaches and teaches parents to talk with their child or siblings about what is happening. Often, the opportunities to talk with a child comes when their hands are busy doing crafts or games, and can come in small bits and pieces. It is completely normal that an important conversation might only take place over the period of just a few minutes, depending upon the age of the child. The caregiving and emotional demands of a terminally ill child can fracture a family, and a critical goal of the team’s support is to keep that family as intact as possible. The team works to create a calm eye in the middle of the hurricane that might otherwise whip a family out of control.

The Affordable Care Act of 2010 significantly improved access to the supportive care of a hospice program for children under 21 who are facing a terminal illness. Available only for children who receive Medicaid, this innovative change allows the parents to secure what is called concurrent care for their child. Concurrent care pays the hospice program for the supportive services at home and at the same time pays the hospital and doctors for treatment aimed at a cure or prolonging life. This concurrent care payment offers the children and their families the best of both types of care, instead of forcing a choice between them. The spirit of the law is that the best focused care will be provided to patient and family.

Early this year, University Health Alliance removed the requirements for access to hospice care by eliminating the need to choose between curative treatments or the supportive care of hospice. This concurrent care, modeled after the Affordable Care Act, Section 2302, Concurrent Care for Children, allows those diagnosed with a terminal illness to have curative or life-prolonging treatments while receiving the supportive hospice care. UHA is the first private insurance company in America to offer such innovative coverage.

Ira Zunin, M.D., M.P.H., M.B.A., is medical director of Manakai o Malama Integrative Healthcare Group and Rehabilitation Center and CEO of Global Advisory Services Inc. Please submit your questions to info@manakaiomalama.com.