A few years ago, my two sisters, my mother, and I sat in the conference room of an elder-care attorney and updated my mother’s legal paperwork. She was 97-years-old at the time and my mother granted her powers of attorney to me, both financial and healthcare. I have long been her primary caregiver, and I have always known her end-of–life wishes. After that day, I felt confident that I could speak on her behalf and she could have the death she wanted, peaceful and without heroics. Today, at age 99, my mother is still alive but is increasingly frail physically, and her dementia is worse. I became less confident about being able to grant her wishes after attending the end-of-life sessions at HealthJournalism2014. Those presentations inspired this story. I have since learned that doctors and healthcare professionals anywhere, for any reason, can ignore advance directives, even those written with explicit requests. Now, I’m convinced, that unless my mother dies at home we may have a fight on our hands, despite her age, and despite her declining cognitive abilities. My story explains and explores the subtleties of advance directives and how physicians view them, and why they ignore them. Geography greatly determines whether end-of-life wishes will be honored. So do politics. After early landmark cases in which parents fought to remove feeding tubes or ventilators from their mortally-injured children, advance directives enjoyed non-partisan support. Now, the religious right has folded this issue into their right-to-life arguments. Dementia complicates everything, most especially when it comes to feeding someone in the late-stages of this disease–no matter what’s been written in a directive.
