The Grafs had reluctantly started Parker on hospice at 7 months. “When it comes to the word ‘hospice,’ anyone who hears it is scared of it,” Anthony says. “But it means different things.” In the United States, “hospice” can designate a place where people go to die, like Crescent Cove, or it can refer to the services provided to make patients comfortable as they near the end of their lives. Unlike adults, children can be “on hospice” while they are also still receiving potentially curative treatments. Whatever form hospice takes, though, the philosophy remains the same: While the rest of the medical field focuses on giving patients more time to live, hospice tries to make the short time they have left as good as it can be.

Parker had in-home hospice services, which means a nurse trained in end-of-life care visited him for an hour three times a week. The hospice nurse routinely checked his heart rate. If it was very elevated, signaling pain, she would titrate an increase in his morphine dosage. She watched him on the ventilator, looking out for uneasy breathing, which would prompt a conversation with the doctor about the machine’s settings. She was often available on her cellphone, but when she wasn’t, another nurse or a doctor could always be called. Sometimes, a social worker would come by and sit with Alissa, talking to her about her hopes for her son. And her fears. “ ‘What could I do to help?’ she would ask me,” Alissa says. “Which was the nicest question ever.”

Read more on the New York Times.