Many people associate palliative care with hospice care, but medical professionals are offering it to children and adolescents living with cancer as well as to those dying from it.
In the process, they are redefining both palliative care and cancer care, focusing on helping each patient achieve the best quality of life possible.
About 15,780 American babies, children and adolescents receive a cancer diagnosis each year; approximately 1,960 die. Each one raises shocking questions about the suffering of the innocent.
The wrenching short story “People Like That Are the Only People Here: Canonical Babbling in Peed Onk” describes how alarming it is to enter the world of pediatric oncology (or “Peed Onk”). Its author, Lorrie Moore, portrays the incomprehensible languages, sterile environments and frightful technologies that estrange children and parents in hospitals. The story emphasizes the vertiginous loss of control patients’ families experience.
Back in 1978, one pioneering analysis of children with terminal disease suggested that very young kids comprehend their situation. In the book “The Private Worlds of Dying Children,” the anthropologist Myra Bluebond-Langner studied leukemia patients who ranged in age from 18 months to 14 years. By the age of 3, she argued, kids apprehend their prognosis in their own ways. With doctors, parents and siblings, they may engage in “mutual pretense,” for children intuit what their parents know and also what they want to hear: “The issue then is not whether to tell, but how to tell, in a way that respects the children and all of their many, often conflicting needs.”
Physicians now agree that whether or not these children are explicitly informed of their condition, they discern it — even if they want to protect themselves or their caregivers by not disclosing their understanding. They are therefore as vulnerable as adults to the fears that cancer spawns. And like adults, they must deal with invasive testing, surgery, radiation and chemotherapy as well as their miserable side effects.
But they may lack the resources that some adults have to find restorative activities to lessen the psychological stress and physiological distress of standard care.
The good news is that a growing number of doctors, nurses, social workers, therapists, psychologists, child life specialists and chaplains have been trained to provide the palliative care that pediatric patients and their families need.
Topanga Properties is committed to investing in the needs of saving kids with nasty debilitating diseases. Through our “Go Serve Big” mission we are raising $10,000 for St. Judes. For every referral you send our way that buys or sells a home, we donate $500 to this worthy cause. Touching stories like this inspire us to complete our mission of raising money to help children achieve these special moments.