What does it mean to be a human being? What does it mean to live a dignified life? Should the two not go together? When a person no longer has any real awareness of her existence, no recognition of previously loved friends and family, no control over body functions, no ability to feed herself, is this a dignified life? Is this a human existence? How much worse the situation must be to a person who exhibits all of the above losses, but who still retains enough lucidity to understand the situation. Living must be a torment, a “hell” on earth, except to those who still retain a belief in a “heaven” after death. To someone like that, the only control left, is over food. Whether to eat and live, or refuse to live, and die. Suicide by starvation. I was faced with just that situation.
I let her die. When my aunt was admitted to a nursing home, she weighed about ninety pounds, and was hardly eating. The team of doctors, nurses, social workers, psychiatrists, suggested a feeding tube. They were shocked by my immediate refusal, as they felt it was the only way to keep her alive. I was the designated Power of Attorney for her health care. Why did I make that decision, and why was it easy for me to make it?
My aunt was my friend. Ten years older than I, and ten years younger than my mother, her sister. She and I were more friends than niece and aunt. She was the one who explained menstruation to me. She had never married, had no children, was the last of her siblings still alive, and had outlived all her friends. No one came to visit her. None of the other nieces or nephews would visit her after one visit. “It’s too painful”, one said to me. Only one nephew, who was also her lawyer, came to see her, but he lived a great distance from here, and was out of the country most of the time. Fortunately I was in the Nursing Home facility every day, so I saw her almost daily.
The basis of my decision rested on two foundations. One was her personality and life until then, the other what she herself had told me were her wishes. She had been a very proud woman, never married, very independent, bought only the best of everything. Immaculate about herself and her living conditions. She had been very explicit about her wishes of end-of-life treatment. We had talked about it often. She said she wanted no efforts made to continue her life if she were ever to be in a nursing home. When my mother, her sister was placed in a Home, she visited once, and never returned, and said, “Don’t you ever do that to me!” But there did come a time when there was no choice. She had fallen, lost the use of her arms, and could walk no longer. She was distraught.
Her whole demeanor changed. Previously quiet, polite and a pleasure to be with, she became violent, spit, kicked, spit out her food at people, bit when nurses attempted to treat her. She was given medication to calm her. This worked somewhat. She ate and drank what appealed to her, but not enough to stop her weight loss. I could see her pain in her eyes. One day she asked me, “How long?” I knew what she meant. How long do I have to live like this? I answered, “Who knows?” She then asked, ”Who does know?” I said, ”God knows”. She yelled, “There is no God!”
Gradually she stopped eating and drinking altogether. She weighed less and less, and got weaker and weaker. She started sleeping more. One afternoon I went up to take her for a walk in her wheelchair. She was still asleep, had not really woken that day. That night I received a call that she had died in her sleep. What did I feel? Sadness that her last years had been such a torment for her, and relief that she was now at peace. I miss her. She is the last of my mother’s siblings. We were good friends. But I am glad that I followed her living wishes to the end. No funeral, cremation, no burial, only a spreading of her ashes. At least there was some dignity for her, she had chosen her time to go. I have made the same requests in my will. I hope my family does the same for me.
– Evelyn Weinrib