Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

11. Bereavement

275 Nine months after her child’s death, a mother shares that it wasn’t until 2 months ago that she could acknowledge that she wasn’t bringing him home. A father whose son died of cancer despite valiant efforts becomes angry when he remembers his son’s ordeal. He has never cried since his son died 3 years ago, admitting that he lives behind a hard, protective shell that only his wife and daughter can penetrate. The death of one’s child can be among the most difficult losses to grieve. This is especially true when the child is underage and depends on the parent for life-sustaining activities. One goal of hospice and palliative care programs is to assist the family in being “prepared” for the death. Many hospice /palliative care professionals also speak about a “good” death. However, for family members facing the death of a child, no death is good and no one in the family is ever truly ready or prepared. The best that health care professionals can do is to assist the family in finding a way for the death to occur in a manner that reflects their goals, values, cultural practices, and religious and spiritual beliefs. Health care professionals know much more about the experience of bereavement than in years past: • A commonality in loss exists for all bereaved families. • There may be particular nuances and unique features of the grief process for families whose child dies suddenly or with an uncertain prognosis. 11 Bereavement Stacy F. Orloff, Ed.D., L.C.S.W., A.C.H.P.-S.W., Suzanne S. Toce, M.D., Lizabeth Sumner, R.N., B.S.N., and Lee Ann Grimes 276 the cycle of care • A perinatal loss often entails unique meanings and is experienced differently from an older child’s death. This chapter will address the common bereavement experience as well as some unique features associated with perinatal, sudden, or uncertain death. Health care providers understand that they are not the experts in showing families how to grieve. Just as the goals of care for the living child are mutually derived by the patient, family, and clinicians, the bereavement plan of care is directed by the surviving family members. The hospice/palliative care team serves as a guide and fellow traveler on this uncharted journey, providing support if the family feels they are losing their way. For families, the death of a child symbolizes the loss of a future—the dream that this child will continue the family’s legacy. The effect of this death may reverberate through the family in untold ways. Heartfelt grief is also noted by the larger community that surrounded the child, such as the child’s peers and classmates, teachers, members of the family’s faith community , and the health care professionals involved in the child’s care. According to a recent study, regardless of the number of years that have passed, memories of the child’s life and death remain fresh (Arnold and Gemma, 2008). Families and individual family members are forever changed by this experience . Parents must learn to integrate their grief in such a way that they can focus on their loss in a controlled manner while restoring their capacity for daily functioning (Barrera et al., 2007). Parents, siblings, grandparents, and all others who were a part of the child’s life need the informed support of health care professionals as they grieve. When a child dies, a large void is left, both physically and figuratively. There is an empty bed, toys no longer played with, perhaps an empty kitchen chair. These reminders are present day in and day out for all members of the family. For some, these are painful reminders, while for others tangible objects such as a favorite doll or sweatshirt provide great comfort. Common Themes Some generalities about parental grief are universal. A study found two factors to decrease parental grief: the parents’ ability to say goodbye to their child (this could have been said at or before the time of death or could have been completed through a symbolic ritual at a later date) and the decision to have their child laid out at home (Wijngaards-De Meij et al., 2008). Many factors may influence how the family grieves the death of the child. bereavement 277 In trying to effectively assist them, health care professionals need to note...