The past days' controversy about Terri Schiavo, the brain-damaged Florida woman whose family has fought to keep her on a feeding tube, has reminded me of the decision my older sister and I had to make in my mom's last days. It was hard for us to believe she was near the end. There were so many times in her battle with AIDS-related lymphona when she had seemed sicker, in more pain. But I think she knew this time was different. As we filled out the extensive paperwork to check her in, she pleaded with us, "You're my advocate, right? You guys will make sure they take good care of me?"
We agreed, of course. We knew she meant we should look out for her best interests, to make the right decisions. And we knew that to my mom the "right" decision meant doing nothing to hasten her death, but not doing anything to prolong it either.
Two weeks into her stay, we were still hopeful that the staff would get her pain and the rapidly growing tumors under control, enough that we could take her home again. That is, until her doctor pulled us into his office and told us our mom wasn't going home. "She's in the final stages of this disease," he said. "She's tired and we've done all we can do for her." He advised us to remove the artificial hydration and nutrition being given to her by the IV lines in her left arm. His reason: The woman in that bed was no longer our mother.
"That is only her shell. Your mother left us two weeks ago and you need to come to terms with that and let her go," he told us, quickly looking away. As he stood, signaling to us that this meeting was over, he said, "She can’t live very long without water. . She won't feel a thing."
When we returned to mom's room her left arm was swollen with fluid. One of the nurses told us her IV had moved and was now going straight into her tissue. As the nurse pulled out her line, we asked her not to replace it. Tears were running down both of our faces. I could hardly breathe. The horrible reality of our decision hit us: We were going to starve our mother to death.
I had failed her. I had promised to be her advocate and now I felt I had just given up on her.
Mom died a week later. I had let her go, but the guilt over the decision we made was overwhelming. What if there was more we could have done?
In the years that followed, my sister went back to school to become a hospice bereavement counselor. In her training, she learned there are benefits of not using artificial hydration and nutrition in the end stages of dying patient's life. My mom's swollen arm was already telling us that she was retaining fluid--an indication that her vital organs were already shutting down. Forcing liquids into a person whose body is shutting down can create an
My sister also learned that as the body dehydrates, it naturally releases pain-relieving chemicals that produces what's even been described as "mild euphoria." Experts say the state that comes with no food intake also suppresses appetite and brings about a sense of well-being. That knowledge gave us both some measure of comfort about our role in Mom's final days. While we were making these decisions, we felt that to continue hydrating and feeding my mom was the kindest thing to do. It was what we needed to do to make ourselves feel better, but not, we now know, what my mom needed to make her last days, hours and minutes, peaceful and comfortable. Feeding and hydrating her further would have been cruel. The most compassionate thing for us to do was…nothing.
But knowing that it was the right thing to do doesn't mean I'm not still haunted by the moment when we said 'Don't replace that feeding tube.' No amount of information can change the agony of these decisions. Even now, we both wonder if there was something more we should have done.
My mom was terminally ill. Terri Schiavo is not.Though her brain has been damaged, her body is nowhere near the terminal shutdown in which food and water become immaterial. Removing Terri’s feeding tube is nowhere near the same scenario as that of my mom. In fact, removing Terri’s feeding tube sets a scary precedent and seems to say being disabled makes you a non-person.
But as the courts and the governor of Florida continue to argue about Terri Schiavo's case, we shouldn't lose sight of the fact that everyone of us could face similar agonizing choices some day. What is the difference between giving up and letting go? A few hours before my mom died, I whispered in her ear, "It's ok for you to go." She had fought so long, put herself through so much. I honestly wanted her to rest. I was so tired of her suffering too.
But after she died, I remember yelling, 'I lied! I don’t want you to die! Come back!”I had thought that ending her pain would also end my own. I learned quickly how wrong that was. It was just the beginning.