[I'm posting this again without my original closing sentence that someone thought was religious. I'm not religious, and nothing religious was expressed in my post or in any replies before the post was removed. But I guess there's no use quibbling with a censorious site moderator who thinks I belong in a Christian discussion group. So here is the censored version.]
From the first mention of ALS, I believed my wife would not want to live locked in, and it came as no surprise that when she prepared her advance directive, she wrote that she did not want anything done or omitted by her doctors or nurses with the intention of taking her life, but that she wanted me to end any life sustaining treatment if she ever became completely unable to communicate. She also wrote that she wanted all treatment terminated if two doctors determined that she was severely and irreversibly brain damaged.
I have also heard people say that if they had ALS, they would want someone to pull the plug before they became locked in.
But you never really know what is right and wrong until you have actually lived through it.
Last July, my wife, who is completely paralyzed except for her eyes and lips, started having some real trouble communicating, and we were concerned she was becoming locked in. She uses a ventilator for therapy at night but breaths on her own during daytime hours, so her only treatment that is "life-sustaining" is her feeding tube. I went through her advance directive with her and asked her to confirm that she wanted me to stop her tube feedings if she became locked in. She said "no." She asked me to change her advance directive so she would not be starved to death if she became locked in. Clearly it was not her idea of how to be kept comfortable. So one never knows how people will decide about things when it comes right down to it. (Interestingly, it also turned out that much of her difficulty communicating was being caused by malfunctioning eye sensors in her Tobii device.)
On December 18, my wife felt very tired all day, and in the evening she became completely unresponsive. Over the next several days, she occasionally opened her eyelids and/or moved her lips, but her gaze was fixed (doll's eyes) and she did not respond to anything in a way that suggested any cognition. On December 21 two neurologists examined her at home and diagnosed a central brain stem event (stroke) from which she was very unlikely to recover, and that she could not see, hear, or understand anything that was happening around her. They said she was permanently and severely brain damaged. Pursuant to her written instructions, we discontinued tube feedings, permanently disconnected the ventilator, and stopped all medication except for morphine. The doctors predicted she would last four days and would breathe her last on Christmas. Some observers hinted that my wife would not want to linger, suggesting that perhaps a larger dose of morphine was in order. But my wife had written in her advance directive that she did not want anything done or omitted with the intention of taking her life, so we were careful not to exceed the prescribed dosage.
Two days later, on December 23, my wife started responding to questions and said she was hungry and wanted to be put in her wheelchair. Her cognitive abilities were completely intact. We stopped making funeral arrangements and had a very, very nice Christmas celebration. Her doctors have no explanation for why my wife was unresponsive for almost six days and suddenly made a complete cognitive recovery. Again, it just goes to show you can never really know in life until you have actually gone through it.
It's tough to convey what it's like to pull the plug on a family member and then put the plug back in, but in the final tally it turned out very well. Ever since the episode last December, my wife has been smiling quite a lot and has not seemed depressed. I'm very thankful for the careful attention that went into writing, revising, and following her advance directive and for the ethical manner in which her health care providers conducted themselves at every step through our ordeal.
From the first mention of ALS, I believed my wife would not want to live locked in, and it came as no surprise that when she prepared her advance directive, she wrote that she did not want anything done or omitted by her doctors or nurses with the intention of taking her life, but that she wanted me to end any life sustaining treatment if she ever became completely unable to communicate. She also wrote that she wanted all treatment terminated if two doctors determined that she was severely and irreversibly brain damaged.
I have also heard people say that if they had ALS, they would want someone to pull the plug before they became locked in.
But you never really know what is right and wrong until you have actually lived through it.
Last July, my wife, who is completely paralyzed except for her eyes and lips, started having some real trouble communicating, and we were concerned she was becoming locked in. She uses a ventilator for therapy at night but breaths on her own during daytime hours, so her only treatment that is "life-sustaining" is her feeding tube. I went through her advance directive with her and asked her to confirm that she wanted me to stop her tube feedings if she became locked in. She said "no." She asked me to change her advance directive so she would not be starved to death if she became locked in. Clearly it was not her idea of how to be kept comfortable. So one never knows how people will decide about things when it comes right down to it. (Interestingly, it also turned out that much of her difficulty communicating was being caused by malfunctioning eye sensors in her Tobii device.)
On December 18, my wife felt very tired all day, and in the evening she became completely unresponsive. Over the next several days, she occasionally opened her eyelids and/or moved her lips, but her gaze was fixed (doll's eyes) and she did not respond to anything in a way that suggested any cognition. On December 21 two neurologists examined her at home and diagnosed a central brain stem event (stroke) from which she was very unlikely to recover, and that she could not see, hear, or understand anything that was happening around her. They said she was permanently and severely brain damaged. Pursuant to her written instructions, we discontinued tube feedings, permanently disconnected the ventilator, and stopped all medication except for morphine. The doctors predicted she would last four days and would breathe her last on Christmas. Some observers hinted that my wife would not want to linger, suggesting that perhaps a larger dose of morphine was in order. But my wife had written in her advance directive that she did not want anything done or omitted with the intention of taking her life, so we were careful not to exceed the prescribed dosage.
Two days later, on December 23, my wife started responding to questions and said she was hungry and wanted to be put in her wheelchair. Her cognitive abilities were completely intact. We stopped making funeral arrangements and had a very, very nice Christmas celebration. Her doctors have no explanation for why my wife was unresponsive for almost six days and suddenly made a complete cognitive recovery. Again, it just goes to show you can never really know in life until you have actually gone through it.
It's tough to convey what it's like to pull the plug on a family member and then put the plug back in, but in the final tally it turned out very well. Ever since the episode last December, my wife has been smiling quite a lot and has not seemed depressed. I'm very thankful for the careful attention that went into writing, revising, and following her advance directive and for the ethical manner in which her health care providers conducted themselves at every step through our ordeal.
