Hospice: a Break for Parents of Dying Children

Most of the sympathy in cases where a child is terminally ill goes to the child, but a top official at Valley Children’s Hospital believes something needs to be done for the parents.

“Parents of children who are terminally ill undergo a tremendous amount of pressure,” said Dr. Stephen H. Kassel, senior vice president for medical affairs at Valley Children’s. “Such a situation is extremely stressful to everyone in the family.”

What Kassel envisions is a hospice for terminally ill children that would enable the parents to take a short break from the constant pressure and stress of caring for a their dying child.

“Hospice care is usually for dying adults,” Kassel said. “Most children have a home and a care-giver who can provide what hospice attempts to provide for older people.

“So what is really needed in terminal pediatric cases is a respite house for the children so their parents can get away from the tremendous strain for a little while. The parents have a need to get away for a brief time for their own psychological well-being.”

Parents Could Take Vacation

What Kassel would like to see is a comfortable place where children who are diagnosed with cancer or any other terminal disease could stay while their parents take a brief vacation.

“The parents would have to feel that their children will get the same loving care they, themselves, provide in their own home,” Kassel said. “They would have to be confident that they were not doing their children any harm by leaving them in the facility.”

Kassel got the idea of a hospice for children while attending a seminar led by Elisabeth Kubler-Ross, the psychiatrist who has written extensively on death and dying and who has been instrumental in promoting the concept of hospice care for dying adults.

After formulating the idea, Kassel arranged for the Valley Children’s staff to meet with Kubler-Ross when she visited California recently.

Kassel said he thinks that Valley Children’s Hospital would be the ideal place for a children’s hospice.

“We’re a regional hospital, serving pediatric patients from more than just the Fresno area,” he said. “Such a hospice would draw patients from all over Central California and possibly from even further away.”

As usual, the problem is money.

Since meeting with Kubler-Ross, hospital supporters, working through the Valley Children’s Hospital Foundation, have begun to check with community and civic groups to see if they are interested in helping finance a children’s hospice.

Kassel said he thinks funding for a children’s hospice should be a community project because there is not much way for such a service to pay for itself.

“The idea is probably not viable in and of itself,” he said. “In most cases where there is a terminally ill child, the family does not have a lot of money to spare. Most of their money goes or has gone for medical treatment for the child.”

Kassel said he believes that if the right approach is made to the civic groups and the community at large, the funding can be found to finance a children’s hospice at the hospital.

“We at Valley Children’s have found that the community at large usually responds when the appeal involves children,” he said.