As baby boomers increasingly face the responsibility of caring for a dying loved one — and making sure their final wishes are met — they often find themselves unprepared for the emotional roller coaster and ensuing battle that can lie ahead.
Her mother's painful and drawn out death nearly a year ago requires daughter Rose Evans to continue to seek professional help to deal with her emotional pain. "I couldn't begin to tell you how awful I felt. I was crying everyday," Evans says.
Evans' mother, Rose Bellmore, battled mouth cancer, pneumonia and a host of other maladies for five weeks that left her in pain — and alive against her will. Even though Bellmore had prepared an "advance medical directive" — instructing her doctors that she wished to die without heroics and with dignity when the time came — her wishes were ignored.
Although Evans says Bellmore's doctors understood her wishes, they did not observe them in Bellmore's final days because Bellmore's medical directive — though with her when she was admitted to the hospital — disappeared and was never found.
Without paper in hand, Bellmore's doctors, in fact, tried to keep Bellmore alive with life-sustaining equipment in her final days.
"The emotional part was just unreal...when the doctors wouldn't listen or others wouldn't listen, we were besides ourselves," Evans says. If she could go back in time, Evans adds, she would have stayed at her mother's side and made sure her medical directive was tacked above her bed. "I'd throw a fit and say this is what she wants!"
Even though Bellmore and her family were knowledgeable about advance directives, they — like many families — ran headlong into a medical system designed to keep people alive, instead of allowing them die according to their wishes.
Each day, dying patients' wishes are rejected for numerous reasons. These include a doctor's refusal to accept a patient's request to bypass life-sustaining treatment based on moral grounds, fear of lawsuits or criminal charges.
From Bad to Worse
Bellmore wrote her medical directive in 1994 when her health began to fail because of pulmonary fibrosis. In it, she designated a health-care power of attorney (who appoints a "proxy" to carry out the dying patient's wishes) and instructed that she wanted no life-sustaining procedures should she become terminally ill.