Jim has survived 13 years of dementia in large part due to the excellent medical professionals that have served us during that time. I respect them all immensely and value their friendship. So I was startled when one of Jim’s doctors turned to me and said “Are you force feeding Jim?”. Heavens I thought, that sounds horrible. Why would I do such a thing and why would the doctor even ask me that? To me “force feeding” sounded like it came out of a terrorist’s playbook. But in reality I didn’t even know what the term “force feeding” meant. So I asked the doctor what it was.
To my surprise the doctor said it was spoon feeding a patient who would not pick up a spoon or fork and do it for themselves. Even if the person with dementia eats willingly with assistance, the term force-feeding is used to describe the assistance. Well, truth be known, I was force feeding Jim all the time. When Jim got tired of feeding himself, I would pick up the fork or spoon and start feeding him. To me spoon feeding was basic humane care and I had asked all of his caregivers to do it as well.
The doctor told me that forced-feeding needed to be a conscious decision on my part.
Dementia is a chronic, progressive disease that can lead to days of suffering. The implication was that once you force feed, you have made a decision that is going to last for the remaining lifetime. There will be no going back. You want to be sure that your current living situation is the pattern or lifestyle you want to continue – because with assisted oral feeding the dementia patient’s life could go on for many, many years.
I told the doctor I had already made a conscious decision and I would be feeding Jim. For me this was not even a decision to consider. If Jim would eat, I would feed him. Even if I wanted Jim to avoid suffering, starvation did not seem like mercy to me.
If someone in your family has dementia, please know that force feeding is a subject that may come up.
It is a personal decision and often left to the spouse or closest family member to consider as the dementia patient has often lost or is viewed to have lost the ability to make this kind of judgment. And at this point it is difficult to be sure what the person with dementia would have wanted in their current condition. But for me It is also is a moral and ethical issue. And if direction is needed to begin framing the decision, the golden rule from Luke 6:31 “do unto others as you would have done to you”, is a good place to start.