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Study explores child end-of-life scenarios

Some parents had considered hastening deaths

By Elizabeth Cooney
Globe Correspondent / March 2, 2010

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When Christine Reilly’s little boy was being treated for cancer, she told his doctor she could handle almost anything.

“The only thing I will not be able to tolerate is him looking at me and saying, ‘Mommy, it hurts,’ ’’ she recalled yesterday.

Michael died when he was 5 years old of alveolar rhabdomyosarcoma, which was diagnosed when he was 9 months. His pain was well controlled, especially at the end of his life. But Reilly, who lives in Whitman, said she can understand why a parent would contemplate ending the life of a dying child sooner if that would ease the child’s unrelieved suffering.

A small study published yesterday in the Archives of Pediatrics & Adolescent Medicine reports that more than one in eight parents surveyed considered hastening the death of a child with terminal cancer, with the child’s suffering increasing the likelihood of such thoughts. Five parents said they actually asked a caregiver to speed up their child’s death.

Michael Reilly’s physician, Dr. Joanne Wolfe, an oncologist and palliative care specialist at Dana-Farber Cancer Institute and Children’s Hospital Boston, is the senior author of the paper, which is regarded as the first to weigh parents’ thoughts about the end of life in these terms.

She and her colleagues surveyed 141 parents whose children had died of cancer at least a year before, asking them about their child’s death and how they would respond to hypothetical vignettes of terminally ill children suffering excruciating pain or in an irreversible coma. The study was conducted at Dana-Farber, Children’s, and Children’s Hospitals and Clinics of Minnesota, in St. Paul-Minneapolis, from 1990 through 1999.

Nineteen of the 141 parents said they considered asking their child’s doctors about an earlier death for their child in the last weeks of life.

Thirteen reported having such a discussion, and five said they asked their child’s caregiver to act on their wishes. Three parents said that wish was carried out, using morphine, but the researchers were skeptical, saying it is more likely that morphine was being used to treat worsening pain in doses not intended to end life.

When presented with a scenario in which a dying child was in extreme pain, half the parents said they would favor speeding that hypothetical child’s death. They were 40 percent more likely to approve of an early death if the child was in pain rather than in a coma.

Wolfe thinks the study should be a starting point for discussion about end-of-life care for children. “The important point is that these considerations may be mitigated if we did a better job taking care of children’s suffering while we are doing end-of-life care,’’ she said in an interview. “There need to be opportunities for families to express their fears and for us to be able to indicate what is possible in terms of controlling pain and discomfort at the end of life.’’

Reilly, who was not part of the study, said once she and her husband, David, knew Michael’s cancer had spread, their focus shifted from curing the disease and having a child who could live a normal life to making sure he could have the most peaceful death possible. He died 10 days after the family came home to Massachusetts from a trip to Disney World.

After they returned home, Michael’s pain medications made him sleepier each day as his disease took its natural course, his mother said. “We felt very fortunate we had control over what happened.’’