Hospice and Death in the Life of Children
Photo from NAGC- childrengrieve.org
This is really a double blog, about National Home Care and Hospice Month as well as Children’s Grief Awareness Month. Initially, I planned to write about the two topics separately, but they kept getting tangled together. Eventually, I realized that you really can’t talk about one without the other.
When most people think of hospice, they envision an older person dying at home, surrounded by their loved ones. But what about when the person dying is a child? In all reality, most children don’t end up in hospice, because parents and doctors fight to the end. It never seems right when a child dies. To see so much potential and hope die before it has really even begun is heartbreaking for everyone. But there are some special needs that happen when a child’s death is imminent and unavoidable.
Child Life Specialists receive specialized training in working with hospitalized children, providing support to the child as needed, but also to siblings, cousins, friends and family. Usually, the hospitalization is brief, non- life-threatening, and hopefully a singular occurrence. But for families with a chronically ill child, a severely disabled child, or a child with fatal disease, it is a very different experience. Likewise, a sudden accident or illness that results in a death or imminent death is devastating. When a result of an accident or sudden grave illness, this is often the first experience that many siblings, cousins, or friends have ever had with the hospital. As a Child Life Specialist in a hospital setting, I will be the first one to tell you that how we handle the death of a child can change the family’s life for better or for worse. It can be scary, frightening, devastating, and cause a future avoidance, or it can be a learning experience, where the children in the family feel loved, supported, and included. I work hard with the surviving children, as well as their parents and supporting adults, to be sure that this experience is handled as well as it possibly can be. But I worry, when they leave me. Is the care I’ve introduced continuing at home? Are the tragic loss and the overwhelming grief of the adults overshadowing the needs of the children? For this reason, I truly support the idea of Child Life Specialists who provide home and follow up care. It is my dream that someday every child will have access to a trained Child Life Specialist through private practice or local bereavement centers. That every child will receive the support they need to move forward from the death of a loved one no matter where they live, or if their family can afford to pay for private counseling. Because early loss does truly change everything from that point forward.
For this same reason, I feel very strongly that every hospice should offer the support of Child Life Specialists for their clients- adults and children alike. Whether the person who is dying is an adult or a child, there are often children who will be significantly impacted by the loss. Child Life can provide anticipatory grief and support, as well as preparation for death and the rituals that occur after, such as funerals, viewings, and trips to the cemetery. Death is an inevitable part of life, and children should be included in these life events as a full and valued member of the family. As the role of Child Life Specialists continues to expand in this important area, I hope that you will tell your patients and colleagues about this important service.
The National Alliance for Grieving Children has a wide variety of support materials available for adults who are supporting a grieving child. You can visit their website here.