In fact, Bellmore chose one of two common ways to set up a medical directive. The other is a living will that lays out what life-saving measures should occur if you are incapacitated by a terminal illness.
Four years later, doctors discovered that Bellmore's mouth cancer had recurred and told her that she surgery was too risky because of her pulmonary fibrosis; they recommended radiation therapy. When the radiologist told Bellmore that she would need a feeding tube and that her lips and tongue would turn black, Bellmore refused to go through with it and opted for surgery, believing that if she died, her death would be more peaceful.
As she prepared for surgery, Bellmore reminded her doctors that she did not want to be put on a tracheotomy tube or ventilator. Her doctors "knew very clearly she did not want to be resuscitated under any circumstances," Evans says.
Five days after the surgery, however, Bellmore had no breath or a pulse. She was placed on a tube and ventilator and her family was not notified. After Bellmore was resuscitated, she wrote her family: "What went wrong, and why?"
"They did all this heroic stuff," Evans says. "This is what my mom absolutely did not want done!" At that point, Evans says, "everything went from bad to worse."
Evans then launched a full-court press with hospital administration, doctors and the hospital's bioethics commission to have her mother's wishes met. It wasn't until three weeks later, however, when Bellmore developed a second case on pneumonia during her stay and failed to respond to antibiotics that doctors finally relented and removed the ventilator. Fifteen minutes later Bellmore died.
Eventually, Evans took her mother's case to Compassion in Dying, a Portland, Oregon-based national education, service and lobbying organization that advocates end-of-life choices and pain management. The organization put Evans in touch with others families who had similar experiences.
"The family was given the runaround and manipulated," says Barbara Coombs Lee, president of the organization.