May 28th, 2009

Reports the Philadelphia Inquirer:

When Sonal Gandhi’s 8-year-old son was diagnosed with a rare metabolic disease seven years ago, the family took the conventional route of seeking out the best and most aggressive treatment in the hope of prolonging his life.

But last year, as Yash’s condition deteriorated and after months of discussion with her husband, Ashesh, the West Chester couple decided to take a path not often traveled by families of terminally ill children: They turned to hospice for help.

Their decision was met with resistance from their doctors at the A.I. duPont Hospital for Children in Delaware, where Yash was being treated.

“The reaction was, ‘Why would you do that? Why would you give up on him?’ ” said Gandhi, 37. “Doctors look at quantity of life, not quality.”

Under the care of Keystone Hospice nurses and therapists, Gandhi said, she believes that Yash has lived with less pain and that the family, including Yash’s 6-year-old brother, has benefited from a wide support network.

Health-care advocates say that the Gandhis are the exception and that most of the 2,000 children in Pennsylvania who die each year from chronic or terminal illnesses or trauma, and their families, are not being presented with all the options for end-of-life care.

In a report released yesterday by the Department of Public Welfare, a 190-member task force concluded that the health-care system in Pennsylvania is not meeting the needs of those children and their families.

The report found that families, particularly in rural areas, do not have sufficient access to hospice care, nor do they have adequate financial or emotional support. Hospitals, insurance companies, and doctors fail to recognize the needs of dying children, which leads to a host of problems, including painful treatments to keep them alive. Advocates say this often robs the child and family of pleasant times near the end of life.

Read more about what the DPW says needs to change at the Inquirer.