We talk about it with clients almost daily … its part of the planning conversation, “Do you wish to be kept alive by artificial means if the effort to sustain life is futile?”
Today, I got to look at this issue from a very personal angle, and I’d like to share the story with you, in the hope that it will make a difference for someone.
For the past 13 years, I have served as the legal guardian for Dee. Dee was born with a developmental disability. When we first met, she was about to lose her home for reasons that were not in her control. She had spent most of her adulthood moving from one place to another. She never really caused any trouble, but was definitely a handful for anyone who knew her. Through a series of events, I eventually became her guardian, and have overseen her life, finances and healthcare ever since.
Two months ago, Dee suffered a major stroke. She was taken to the hospital, where it was determined that, in addition to some other injuries caused by a series of falls, her brain was bleeding. She was admitted to a Neuro-critical care unit, where tests were run to determine a course of treatment. The Neurologist explained to me that there was really nothing they could do because the bleed was so deep in her brain. He recommended a wait-and-see approach for a few days. On the 3rd day, I walked into her room to find her awake and looking right at me! She was talking a bit, and although she didn’t recognize me or anyone else, it seemed that she was making positive progress.
The progress was short, unfortunately, and Dee soon slipped into a semi-consciousness. Her prognosis was poor, and the decision had to be made. As her guardian, it was my responsibility to honor her wishes and make decisions in her best interests. Thankfully, she and I had discussed the matter on numerous occasions, so I knew that I was making the decision she wanted me to make. I agreed to transfer her to a nursing home for palliative care. She passed away peacefully a few days ago.
My peace of mind lies in the fact that I knew Dee well, and we had discussed the possibility of such a situation. I was confident when answering questions about resuscitation, ventilators and feeding tubes, that I was giving the answers she wanted me to give. But it was still hard … because these are end of life decisions … and it should be hard.
Talk to your loved ones. Tell them what you want. Don’t make them make these decisions without knowledge of your wishes. That would be torture.
Rest in Peace, Dee, I will certainly miss you.
Susan M. Hunter, Attorney at Law
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