Roger Ebert was not secretive about his feeding tube, which kept him alive the last few years of his life and allowed him to keep on writing movie reviews. “Six times a day,” he wrote in a blog post “a can of liquid food is dripped into me from a plastic bag on a pole. It takes maybe 15 minutes. I continue to write, read, or watch TV.”
In Roger’s case and in that of thousands of people with cancer, Lou Gehrig’s disease, or recovering from stokes, a small plastic tube is all that stands between them and starvation.
The modern feeding tube was developed by Drs. Jeffery Ponsky and Michael Gauderer in 1979 when in an experiment they created a small tunnel above a baby’s belly button, leading directly to the stomach. Using an endoscope, they were able to accurately place the feeding tube.
For people like Roger Ebert who can make their own decisions, feeding tubes are a great invention.
But what about someone with advanced Alzheimer’s disease who survives to the point of being unable to swallow, even with assistance, or who has lost all interest in eating and drinking, and is in the final phases of the disease process?
Is it ethically or medically necessary to use a feeding tube?
While 20 plus studies have concluded people with dementia don’t benefit from feeding tubes, they are still routinely used in many nursing homes and in many hospitals. Often times they are even used when though patients can still benefit from assisted oral feeding which at least provides human touch and contact.
It’s just more expedient for short-staffed nursing home to stick a tube into someone’s stomach.
The Alzheimer’s Association has taken an official position that it is “ethically permissible” to withhold both nutrition and hydration artificially administered by vein or gastic tube when a person with Alzheimer’s is at the end stages of the disease and can no longer take food or water by mouth.
Tube feeding can cause diarrhea and related bed sores and it can result in the use of physical restraints to prevent individuals from pulling the tubes out of their abdomens.
People with Alzheimer’s need to be informed about the risks and benefits of tube feeding while they are still competent, and have the opportunity to sign an advance directive specifying what their wishes for future care are.
In the absence of such a directive, the Association asserts, a surrogate (trusted family member) may make decisions consistent with the dying person’s expressed wishes or best interests and consistent with state laws.
Not eating at the end of life is a normal part of they dying process and once you stop eating your body triggers a biochemical process called ketosis. Ketosis blunts hunger and releases natural morphine-like agents.
If you don’t want to be artificially fed with a tube at the end of your life, you need to make this part of your medical directive and let your wishes be known to close friends and family.
For myself, I want to be able to simply refuse to eat food or drink water if I feel I’d rather die than suffer.
This should be my right. A simple right to die by starvation.
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