The following New York Times article, The Last Day of Her Life, is a must read for anyone who is struggling with Alzheimer’s in their family or themselves. It chronicles the life of Sandy Bem, a Cornell Psycology Professor who was struggling with “cognitive oddities” and ended up with a diagnosis of “omonistic mild cognitive impairment”. Not a comforting verdict as cases typically progress into full blown Alzheimer’s within a decade. Sandy’s decision was to take charge of her own death while she still had the facalties to do so. As one can see from the article, the issue is much more convoluted.
It raises many more issues. Not just the ethical one of one’s right to die and assisted suicide but the complicating factors such as “being of sound mind and body”. Not only is that questioned when the decision is made but also down the road when it is carried out. How do you absolve loved ones and health care practitioners from any fallout of the responsibility from your actions? And then there is the question of what is quality of life? It’s constantly changing. It involves both “Critical Interests” (personal goals and desires that make life worth living) and “Experiential Interests” (enjoying listening to music or eating ice cream). These change as our expectations and capabilities change with age. A sixteen year-old would rather be dead than live a 60 year-old’s life so it’s hard to say what someone with Alzheimer’s is really feeling at more advanced stages. Is it about what you’d want for your life when all of your facilities are intact or about the survival instanct that often kicks in for some (but maybe not others)?
In my own case, I know Mom always wanted to live no matter what because she was always like that. She was even afraid to donate her organs for fear no one would try to keep her alive. I’m not that way, but who’s to say what I would feel? Right now, I sure know the career minded 20 year-old I once was would have been resisted the limiting life I lead now as a 58 year-old, 24/7 caregiver. Funny, the fewer goals I have in life now, the more I identify with the “Experiential Interest” side of quality of life— Yes some days I just get a big buzz from eating ice cream and that’s about it. I’m sure Mom feels the same way!
A big issue not addressed in the Sandy Bem question of quality of life is chronic pain? Most people would agree that no one wants to endure years of suffering like that (which is why we euthanize a beloved dog that has fallen into misery in it’s final days). It would seem as if Sandy Bem at least was spared that misfortune. Another issue is fear of burdening loved ones. No one wants that but it is almost inevitable for most of us. Finally, what I find to be the most criminal aspect of our healthcare culture is the cost of the treatments Sandy Bem was taking that provided no proof of effectiveness. How can a world anxiously awaiting a cure for the dreaded disease of Alzheimer’s feel confident they could ever afford that treatment, if and when that Holy Grail of medicine is finally discovered? These are all topics of ongoing, if not heated, discussion as the issues explode with aging baby boomers.
