For parents already dealing with the sadness, anger and guilt of having a child with a terminal illness, watching that child experience pain in her last days is excruciating.
In a study led by Children’s Hospital Boston and Dana-Farber Cancer Institute’s Joanne Wolfe, MD, MPH, which was covered today in The Boston Globe and Time magazine, more than one out of eight parents who were surveyed considered hastening the death of a child with terminal cancer, with their child’s suffering increasing the likelihood of such thoughts. Five parents said they actually asked a caregiver to speed up their child’s death. “The fear of pain is the critical factor for parents with regard to hastening death,”said Wolfe in the Time article.
To help parents deal with the agonizing decisions they must make in situations like these–and to help the final days of a terminally ill child’s life be as pain-free and fulfilling as possible–Wolfe and Children’s created the Pediatric Advanced Care Team (PACT) in 1997. PACT staff manage patients’ pain and symptoms, address issues related to family dynamics, help open lines of communication and coordinate home care.
One essential part of the PACT program is Comfort Corners, which are home-like living spaces at Children’s for patients receiving end-of-life care and their families. The large, natural sunlight-infused spaces hold many family members, who can stay with the child 24-hours a day. Prior to PACT, 38 percent of patients died in an intensive care setting; since PACT’s founding, that number has dropped to 22 percent.
PACT results in more–and earlier–discussions about hospice care, eases suffering and improves communication. “There need to be opportunities for families to express their fears and for us to be able to indicate what is possible in terms of controlling pain and discomfort at the end of life,” said Wolfe in the Boston Globe article.
Listen to Wolfe talk to NPR about this study.