A frail, exhausted octogenarian dies and we muse on his consummate life. He’s made it through childhood to old age, and the finishing post is death. Grief and sadness arise, but he had a “good inning” (or that’s the hope). Not so with the demise of a child. We expect our progeny to flourish, to enter adulthood, to thrive and outlive us, and when they don’t, the natural order of things is undone. It’s a generalization, but that’s mostly how we see it. Our editorial team braced itself for tears with this issue of Natural Transitions Magazine. If death is still largely a taboo topic in this culture, child death is probably the hardest to broach. Bereaved parents often feel the discomfort of others who don’t know what to say or do around them.
It’s not just lay people who don’t know what to do or say when a child is dying or has died. Many healthcare professionals, including hospice staff, feel inadequately trained to serve terminally ill children and their families.
In research for Vol.2#2 of Natural Transitions Magazine, I came across the work of Children’s Hospice International (CHI), whose mission is to encourage the inclusion of children in hospice, palliative, and home care programs. The organization has provided invaluable education and training to enhance services to families with terminally ill kids. In 1983, when CHI began, only four hospices in the US accepted children. Now, most hospices are at least open to serving children. Unfortunately, many hospices still do not feel well equipped to deliver pediatric care.
Getting families with dying children to even consider hospice is another monumental challenge. If choosing hospice means handing parents an ultimatum to stop treating their child’s disease, hospice frequently doesn’t stand a chance. Families of very sick children most desperately want them to live. Terminally ill kids generally receive more aggressive treatment than adults with similar diseases. Moreover, physicians often find it difficult (medically speaking) to hand out the six-month prognosis of probable death that is typically required for hospice eligibility.
CHI has been instrumental in promoting the option of concurrent curative and palliative care from the time of diagnosis, available through the Medicaid waiver. (See our article Entering the Mainstream: Pediatric Palliative Care Comes of Age.) A gifted palliative care team can act as a bridge to hospice, introducing the hospice concept, helping families to evaluate treatment options holistically (for example, their impact on quality of life), and even introducing the “what if” scenario of death.
This summer issue of Natural Transitions Magazine isn’t just about child death; it’s also about how children experience the deaths of others. Intuitively, I’ve always felt this hinges a great deal on how we adults deal with mortality. Read our contributors’ views on exposing children to the way of all things—death. And then read how we can help them to experience healthy grieving.