Trudy refused to be pinned down about the ventilator. In an effort to rein her in, my siblings and I resorted to communicating with her via group email. This system would make it harder for Trudy to lie, since she has to report to all of us simultaneously. Plus, even though Trudy resents direct questions, she can’t burst into tears and hang up on an email.
I wrote a message insisting that Trudy put in a standing order not to ventilate Dad in an emergency, in case no family members are present. I reminded her that we don’t want to prolong John’s suffering, and offered to instruct the doctors for her. Trudy expressed the fear that if she agreed to do that, the hospital would then stop all forms of treatment, because that is what happened to her “darling friend Jan.”
Jan was a petite, 95 year old woman who wore her gray hair in the same chin length bob she was probably given by her mother in 1923. She was an outspoken atheist, a staunch leftie, and a pragmatic intellectual. Until the day she went into the hospital for the last time, Jan continued to clip socially significant articles from the newspaper and mail them to her many friends, my father among them. She was as tough and sharp as nails throughout her entire life, but after nearly a century of service, her body finally wore out. Jan’s Advance Directive instructed the hospital not to sustain her by medical means. As was her wish, Jan spent the last few days of her life drifting toward death on a morphine drip.
Trudy’s recollection is a bit more Gothic. In her eyes, the sinister hospital staff managed to dig up an ancient, ill-conceived directive, which permitted them to leave poor, feeble Jan languishing, unattended, on the “dark and gloomy” 5th floor. One day, just after Trudy had gone home, Jan died. Trudy often wonders whether one of the hospital staff had, “slipped Jan something,” while no one was looking. She concluded by writing, “It still haunts me and I don't want to think of that happening to your Dad.”
To Trudy’s mind, Jan could not have chosen to die. Events and thoughts that don’t correspond with my mother’s wishes are inconceivable to her. Dying, i.e. leaving Trudy, is disloyal. Therefore, Jan must have been killed. Trudy will not allow John to leave her. Trudy will not let John be killed. Besides, as it stands now, John is the perfect husband. He lives at the hospital, he can make no demands, he is totally at her mercy, she gets attention from doctors, and his illness puts her at the center of attention.
Now furious, I asked Trudy to take a good look at John’s roommate and decide if that’s what she wants for Dad. I told her that John was not going to get better, ever, and begged her to take him off the feeding tube as well, so he could die in peace. I informed her that if she decided to keep John alive with a ventilator or any other life support apparatus, I wouldn’t be back to witness it.
Contrasting my hot-headed missive, my warm-hearted sister-in-law, Susan, jumped in with a long, thoughtful email, designed to assuage Trudy’s fears. She had spoken to her friend, an oncology nurse, who assured Susan that a hospital will not discontinue any treatment without specific consent from the family. She reiterated that putting John on a ventilator may prolong his current state, but without any quality of life. She added that any intubation can expose patients to additional infections and complications, and worried that a ventilator may cause John more suffering.
After visiting John, and reading the flurry of emails, Karla calmly put in her two cents as well. “Now is not the time to argue, to put things off, or to be controlling. This was the worst visit I have had with John and my feeling is that he is very close to death; his body is swollen which must mean that his organs are shutting down. He can barely open his eyes to acknowledge that he is aware of anyone’s presence. I am sure that he does not want to spend another second in this condition. He has lost any ounce of dignity that he might have had. He will never, ever improve. I am sure that if he had the ability, he would close his eyes and will himself to death. I don’t know about the rest of you but I get no pleasure from watching John in discomfort. I think he should be given the okay from all of us to let go, and be put on the morphine drip. Mom, I know that this is burdensome to you. You should relieve that burden and put John’s care in Mary’s hands. Her love for him will guide her to do what’s best for John.”
Trudy was pissed. Not because of my irate email, but because of Susan’s and Karla’s more reasonable appeals. Trudy loathes being placated. This wasn’t about John's well-being; it was about power and control. Her lengthy reply began, “How dare you…” and it only got worse. The bottom line was that she is running the show. “Never have I stated that I would use a ventilator to try and keep him alive, and it is still not my intention to use one; however, I said I don’t want to think about it right now!!!” She summed it up by telling us all she wished we understood, but if we don’t, “so be it.”
The following day, Susan and Karla both sent out emails reiterating their concern for John, and apologizing to Trudy for interfering.
Wednesday, December 12, 2007
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