Top Doctors 2005: The Long Goodbye

Michelle Holmes knew it was inevitable. Her son Brandon, weakened by a rare neuromuscular disease, wouldn’t live to see his 19th birthday. Michelle swore his last days would be spent at home, not in some bleach-soaked ward. But Carolyn Long, a social worker at Children’s Hospital of Philadelphia, offered her another option. Bring Brandon’s family to him here at CHOP, she said. We’ll do everything for both of you, so you can stop playing doctor, receptionist, housekeeper, cook — and just be with him. “I didn’t get to be Mom at home,” Michelle says. “But for that last week, I didn’t worry about anything else.”

Michelle and Brandon first met Long months before his death, through CHOP’s Pediatric Advanced Care Team, a handful of physicians, nurses, psychologists and counselors who deal exclusively with terminally ill children. Created two years ago, PACT has served more than 150 kids, and helped parents make decisions they shouldn’t have to. The kids are cared for 24/7 by PACT’s staff; art therapy helps them release emotions they can’t express in words. The team also offers survivor support, with extended counseling and annual vigils in tribute to former patients.

Dr. Chris Feudtner, PACT’s research director and a father of two, always hears the same question—How can you do this? His answer: “How can I not?” Years ago, Feudtner saw his aunt and sister get less than ideal hospital treatment as they approached death. But he doesn’t often tell patients that. It’s not about him, this work. It’s about kids like Brandon. A year after he died, his sister continues to take art therapy through PACT, and when Michelle feels like the world just wants her to move on, she knows PACT is still walking at her pace. “When I talk to Carolyn, I feel my needs are really understood,” she says.