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.
"Improving the quality of life for dying children in Pennsylvania will require sweeping social changes around the fact that children do die," said Gail Inderwies, founder of Keystone Hospice in Wyndmoor and the task force's cochairwoman, who spoke at a rally in the Capitol yesterday. "We need to develop more humane and holistic supports for families and children when treatment for their disease fails."
Families and child-health advocates who gathered yesterday said they were seeking the changes the task force report recommended: a more strategic and comprehensive approach to care, improved communications among health-care providers, and better education for doctors and other medical professionals.
Among the report's recommendations:
Create a bureau within the Department of Public Welfare for pediatric palliative and hospice care responsible for setting standards for end-of-life care for children, coordinating training programs, and drafting legislation to address reimbursement and funding for hospice services.
Establish a statewide Pediatric and Palliative Care Coalition and regional centers of expertise.
Establish a funding program for direct care and for program development.
Improve the range and depth of services, for instance, provide services to siblings of terminally ill children, and improve access to respite and bereavement services for caregivers.
Chris Feudtner, a pediatrician at Children's Hospital of Philadelphia and a member of the task force, said that "tremendous progress" had been made at his hospital and elsewhere in the last five years, but that there were still a lot of areas for improvement.
"We need to fundamentally help parents understand the situation with all of its gravity but also the possibilities of ways to take care of a child that would be loving and supportive," said Feudtner.
Just one year ago, doctors gave Yash - whose I-cell disease has severely impaired his physical and cognitive development - two weeks to live.
Gandhi said that she had no idea how or why Yash had beaten the prognosis, but that the hospice network had made it possible for Yash not only to live at home, relatively pain-free, but also to receive a range of therapies, including art, movement, and especially music, which makes him "smile so brightly he lights up a room."
She said she hoped the task force would help shed the "death-bed" perception of hospice care and the fear of talking about end-of-life choices for children.
"If doctors get more educated, people could start down this path earlier," she said. "If we hadn't been adamant about it, we wouldn't have gained this huge support system that has helped us get through it."
Read about pediatric palliative services in Pennsylvania and see the task force report at http://go.philly.com/hospice
Contact staff writer Amy Worden at 717-783-2584 or aworden@phillynews.com.
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