Death of a Child: Losing Adam

Two-year-old Adam and his mother, Bonnie. Adam was diagnosed at 14 months with Tay-Sachs disease.

Tim Chisser, San Diego Hospice and Palliative Care

Adam's hospice nurse, Susan Finkelstien, left, with another infant patient.

Tim Chisser, San Diego Hospice and Palliative Care

The largest survey to date of bereaved families is published today in the Journal of the American Medical Association. It reports family members' perceptions of the quality of end-of-life care in America. Only half of the families surveyed rated overall care in hospitals and nursing homes as excellent, while 70 percent said at-home hospice care was excellent.

NPR's Michelle Trudeau and producer Peggy Mears recount one family's experience with hospice care. It's the story of a San Diego couple who were faced with the impending death of their infant son Adam, who had Tay-Sachs disease, a fatal genetic illness.

Trudeau talked with Adam's mother, Bonnie, during the time of her son's illness, and also to the children's hospice team in San Diego who cared for the family. The family has asked that NPR not use their last name.