That is what it's like, he says, to be dying.

After 15 surgeries and 30 months of chemotherapy failed to cure the cancer that started in his right leg and spread to his lungs, Kerr decided in August to stop treatment, enter hospice, and let the disease run its course.

His goal now is to blunt the pain so he can spend what time he has alert and aware, enjoying family and close friends. "I'm comfortable," the Chester County teen said in an interview this month. "My quality of life is pretty good compared to what you would expect from someone who's dying. . . . Hospice has really helped with that."

For some, the concept is unthinkable: deciding that a child or teenager with a terminal illness should halt aggressive medical intervention and, instead, receive the kind of care that treats the pain and other symptoms of an illness, rather than the illness itself.

Though hospice and palliative care have long been accepted as an end-of-life plan for adults, some doctors, medical providers and even parents have resisted it for children.

But in Pennsylvania, a task force assembled by state Public Welfare Secretary Estelle Richman hopes to erase any stigma and eliminate barriers to providing the care for children.

When it comes to kids, the mindset is frequently to "treat, treat, treat," said Richman, even when further treatment is unlikely to work and the child is near death. Often, those treatments require hospitalization and can cause excruciating pain.

"Nobody wants to talk about children and death in the same sentence because children aren't supposed to die," said Gail Inderwies, executive director and president of the Keystone Hospice in Wyndmoor and a chairwoman of the state task force.

"But they do get sick and some do die," she said. "And we have to focus on giving them quality of life when other measures have failed."

According to a 2003 report from the National Institute of Medicine in Washington, about 55,000 people under 19 die every year in the United States. And 500,000 suffer from fatal illnesses.

Removing obstacles

Although there hasn't been any organized opposition to expanding hospice and palliative care for children, Pennsylvania's task force wants to make it more accessible and accepted so that sick children spend less time hooked up to hospital machines and more time at home just being kids.

A central goal is to find ways to start such care earlier, ideally from the moment of diagnosis, and combine it with traditional medical treatment. A set of recommendations is expected late this year.

Now, existing regulations mean that many parents "end up becoming 'general contractors,' trying to coordinate different types of care," said Gavin Kerr, Ryan Kerr's father. "It is exhausting and it is a struggle."

JoAnne Cooper of Chester Springs knows that feeling well.

'The right thing for Katy'

When surgery did not help and she realized Katy was in terrible pain, Cooper decided on hospice. She was met with fierce resistance from some doctors, who believed Katy should undergo further surgery even though it would likely not cure her.

Getting a doctor to order hospice for Katy ended up taking more than six weeks.

"I'm not sure that every parent could do what we did," she said. "But we felt it was the right thing for Katy. The last thing she saw was her family and her home."

John and Paula Barron, who recently moved to Florida from Philadelphia, said it was the right choice for their son Zachary.

Zachary was 8 when he died of a rare genetic disorder that affected his central nervous system. It was April 22, 2002, and he was at home, in his bed, with his mother lying next to him.

"It gave us peace, that he's in the right place," Paula Barron said.

Some of the goals the task force is considering would require legislation or the redrafting of state regulations.

For instance, federal regulations now permit reimbursement for hospice care only if a child is given six months or less to live, and if the family forgoes any further intervention. Many private insurers follow the federal model.

And that, hospice advocates say, puts families in the position of making the choice between hospice and painful, and possibly fruitless, hospital treatments.

Some states, such as Colorado and Florida, allow children to receive hospice and palliative care simultaneously with traditional medical treatments.

That is not the case in Pennsylvania, and the task force is examining what it can do to change that.

But perhaps the toughest job, advocates said, will be challenging the notion held by some that when a family puts a child in hospice or provides palliative care, it is giving up hope.

Ryan Kerr does not feel that way.

He was diagnosed with cancer in his right femur in 2002. After a series of surgeries and physical therapy, he thought he was cancer-free.

But in late 2004, he discovered the cancer had spread to his lungs. A year later, doctors found a new tumor in his right leg, which they amputated above the knee.

Through it all, Ryan kept up with school, friends and hobbies.

But the cancer would not leave his body. Last year, doctors found more tumors in his lungs, and they were growing aggressively.

In more ways than one, Ryan is a survivor, enduring painful rounds of chemotherapy and surgeries for four years. But he was tired. And there were few medical options open to him.

So in August, he began home hospice. He takes 17 medications four times a day, including steroids, which have made him gain weight but which have helped dull his pain. He is also on a slow, oral chemotherapy to prolong his life.

Doctors say that children with terminal diseases tend to live longer than their adult counterparts.

Still, from his symptoms, Ryan believes death is close. So he has focused on "having as much activity in my life as possible," something with which hospice has helped.

"You can never really prepare for dying," he said. "But the biggest thing I would say is, just spend as much time with family and friends as possible. And have as much fun as possible."