Homecoming

Perhaps to buffer against untoward communication, and to ease the shock of appreciating the degree to which her own child was injured, Nancy was met at the hospital by a couple of girlfriends upon her return from London. Her ex-husband had already left after a long night to get some rest.

Nancy knew Maggie had had a stroke and an operation to remove a clot but neither appreciated the gravity of her situation nor the details of the surgery. As a “really good social worker” and doctor explained, Maggie's stroke was a consequence of a blood clot in the basilar artery in the back of her head just above the spine. It is a crucial vessel that supplies blood to the all-important brainstem, whose essential functions are responsible for reflexes and breathing and all the sorts of things that make someone awake.

The clinical team that met with Nancy were initially circumspect about Maggie's prognosis. At the outset she was being treated for brain swelling that “could kill her.” Maggie overcame these early hurdles and the threat to her survival subsided. And as the risk of brain swelling faded, the question of whether she would live or die was replaced by the harder question of the kind of life she might have.

Maggie was at a pivotal junction in her care. She was leaving the acute care heroics of emergency rooms, neurosurgery, and high-tech interventions and transiting into the realm of decisions that would most likely destine her to a life in chronic care, of nursing homes and dependency. Several days after her stroke and into this period of relative stabilization, Nancy began to ask the doctors caring for Maggie about their views of her future. One of the doctors urged her to forgo the pivotal decision to put in her first tracheostomy and feeding tubes that would help her breathe and eat. He told Nancy that, “I needed to look at the quality of life that she would have and what she would want.” He also brought up the question of resource allocation and “they talked about even the resources that would be used.”