BOB ABERNETHY: Our cover story this week concerns children at the end of life, in pain and, often, alone. A new report from the Institute of Medicine, which advises the government on health policy, calls on the U.S. to do far more than is now being done to relieve the suffering of dying children and their families.

Earlier this year, Lucky Severson reported on the dilemma of doctors and families trying to choose between painful treatment that is unlikely to work and palliative care to make possible a so-called "good death."

BONNIE SHOVAL: The minute the diagnosis comes back as cancer, you feel, I think, as if you're in a bad dream.

JACOB SHOVAL: He was an amazing fighter. I've never seen anybody so brave. He was in agony. He was in very bad shape.

LUCKY SEVERSON: Ben was four when he died a very painful death from neuroblastoma, leaving behind a lonely older brother and a devastated mom and dad, Bonnie and Jacob Shoval.

They fought for Ben's life to the very last minute -- praying for a miracle, for a medical breakthrough, the latest technology. Ben went through five chemotherapies, several surgeries; and then he died in a hospital room. And now his mother wonders if they should have accepted his death earlier and let Ben die in the comfort of his home.

MS. SHOVAL: He would have been probably happier had he been with his toys, in his house, with family around him.

SEVERSON: Almost 30,000 children in the U.S. die each year from chronic illness, like cancer and heart disease -- some in extreme pain, too many all alone. Fewer than 10 percent get the end-of-life palliative care treatment that's available for grownups.

DR. CYNDA RUSHTON (Johns Hopkins Medical Center): The majority of children die in this country in some kind of health care institution. And many of them die in critical care units. And many people question whether or not that is the environment where children should die.

SEVERSON: Dr. Cynda Rushton is director of Palliative Care for the Children's Program at Johns Hopkins Medical Center. The team is discussing the best approach to treating a dying child.

DR. RUSHTON: There are many ethical issues when you think about caring for children at the end of life. There is that tension between ... benefiting them by using our technology and the reality that often comes with that ... So we are trying to find that balance.

DR. IVOR BERKOWITZ (Pediatrician, Johns Hopkins Medical Center): I think that we can predict with a really good degree of accuracy that this child's life span is really pretty limited.

SEVERSON: Dr. Ivor Berkowitz is a pediatrician and a member of the Children's Palliative Care team. Because some children do rally with aggressive treatment, Dr. Berkowitz finds himself caught in a difficult place -- knowing when to keep the aggressive and often painful treatment going, and when to stop it.

DR. BERKOWITZ: It's a burden of pain and a burden of discomfort. And that has to be balanced with the benefits and I think that all of us have recollections of exceeding what we should have in this kind of environment.

DR. DAVIS YANG: Doctors are trained to cure people. So [with] people that can't really get better, they really can't help and you can't fix. It is easy to think of it as a sense of failure.

SEVERSON: In a Chicago suburb, Dr. Davis Yang is experiencing first hand the anguish of a son dying before his eyes. DJ has a very rare genetic disorder that destroys the central nervous system. It's called Tay-Sachs, and it is always fatal. DJ's mother is Akari Yamada.

AKARI YAMADA: I can't lie. We were utterly devastated.

SEVERSON: Many parents choose against palliative or hospice care for kids because they think it means giving up. That's what DJ's parents thought until they found one of an increasing number of programs that simply help the family make wise decisions during the most traumatic time of their lives.

Tiffany Levinson runs the Palliative and Hospice Care Center of the North Shore, in Evanston, Illinois. Her team works with DJ's parents.

DR. TIFFANY LEVINSON (Palliative and Hospice Care Center, North Shore): It is not magically driven, it is not doctor-driven. It is really what the family chooses to do and we support them no matter what that is. Whether they are cured or not cured.

MS. YAMADA: We wanted to keep DJ at home. We didn't want him to die in the hospital. We haven't given up hope on him, but we understand that there are certain things that aren't going to get better.

SEVERSON: Akari has taken leave of her job as a professor. Dr. Yang only works part time, so they can both spend as much time with DJ as possible. They also have a baby girl.