More NurseWeek Features   Smoke-Free Zone   Nurses and patients tackle nicotine addiction   Bloodless Survival     Surgical techniques to use when transfusion drops out of the equation

Jeanne pulls up in front of a seemingly indistinct gray duplex on a block of tattered homes in San Jose, Calif. She peers through the screen door and scans the room, looking for 11-year-old Antonio.

The boy appears to be nowhere in sight, until her eyes fasten on a motionless lump on the couch. She enters, and prods Antonio gently. His heavy eyes open briefly. Jeanne and the boy's relatives smile with nervous relief-and with good reason.

Each of Antonio's naps could be his last. Doctors didn't expect the boy to survive through the week, and Jeanne, a hospice nurse, had been charged with making his final days as enjoyable as possible.

Antonio Cancilla was a candidate for a third heart transplant, but he had grown to loathe the life confined to monitors and white walls. The sixth-grader knew another heart wouldn't fix his problem and finally confided in his uncle that he didn't want to go back to the hospital anymore.

Both were relieved when doctors introduced them to hospice, a program that would shift the focus from finding a cure to enjoying Antonio's remaining days. Jeanne Fabricius [fah-BREE-she-us], RN, a nurse with Hospice of the Valley in San Jose, was visiting twice a week to ensure that Antonio wasn't in pain and to check in with his uncle, who was the primary caregiver.

Like many hospice patients, Antonio and his uncle Anthony wished they'd known about hospice before the final weeks of the boy's life. Other patients are driven away by misconceptions about this form of care. For some, it's perceived as a dismal failure to conquer a disease. For others, it's a place people go to die. Yet nurses such as Fabricius contend that this couldn't be further from the truth.

Hospice nurses see their mission as helping people to fully live their final days or months. The nurses interviewed by NURSEWEEK agreed that when families wait too long to seek hospice, it not only increases the acuity of the patient's illness, but also severely limits the patient's ability to fulfill their final wishes for connecting with loved ones. As a result, many hospice administrators are looking to the future with trepidation. They foresee an aging baby boomer population with increased acuity levels flooding hospice programs in the midst of a nursing shortage.

Although nurses like Fabricius are eager to see patients turn to hospice sooner, they acknowledge that they are butting against society's deeply engrained denial of death. Fabricius remembers seeing this denial as soon as she began nursing in the 1970s. She saw doctors and families avoid the topic of death at the expense of the patients.

"I felt people died very lonely because family and doctors didn't bring it up," she said. "The patients knew they were dying, but nobody would talk about it. People think they are protecting the dying person, but really they are protecting themselves. I thought there must be a better way to die."

Next Page