by Claudia Windal

Created on: October 01, 2010

When the phone rang at 4 AM, we both knew something was terribly wrong somewhere. It was my friend's 85 year old father who had been admitted to an Intensive Care Unit of a Roman Catholic hospital in southeast Missouri (a 12 hr. drive from us). We were on our feet, dressed and packed within 45 minutes and on our way to Missiouri.

As Joan related the phone call to me, it seemed that her father had experienced shortness of breath and the nursing home supervisor called for an ambulance. No chart accompanied him; no living will and no one was told that he suffered from ALS/Lou Gehrig's Disease. Frightened by his inability to breathe, he indicated that he wanted to be intubated and placed on a respirator; he didin't "want to die." By the time his first daughter arrived in the ER, the tube had been placed and ICU was awaiting Gene's arrival in their unit. By the time we arrived, all seven of Gene's children as well as his wife, were with him in his room. Gene was not able to speak, but he did gesture wildly. It seemed that there was something he wanted us all to know. We tried to help him write his words, but he was too weak to move the pen even with help.

The seven adult children gathered to discuss this situation (I was invited to be with them because of my years of experience as an ICU nurse). Gene's primary physician had been honest with him about the progression of ALS. Gene realized that swallowing generally becomes a huge issue as well as requiring some time of assisted respirations. The physician told Gene that once that assistance was initiated, he would probably never be able to live without it. His advance directive clearly stated that Gene was not to be intubated. The decision was made to have a conference with the physician the next morning.

That evening, Gene was able to write his first note. In an unsteady hand, he wrote, "Let me die." The next morning, the family shared that note with the physician. His reply was that he couldn't simply remove the ET because of a written note that he couldn't even confirm had been written by Gene. He invited us to all gather with Gene as he asked him what he wanted. The physician leaned over Gene's bed and spoke loudly as he asked, " GENE, DO YOU WANT TO DIE?" The terror that overcame Gene was palapable as he shook his head "no." 

Several days later, Gene developed a high fever and was placed on a cooling blanket. His eyes begged for relief while he shook terribly from the cold. The next morning, Gene was told

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