Feeding Tube Lessons

After writing about our family’s experiences with inserting feeding tubes into the stomachs of precious loved ones, I have now arrived at the point of drawing some conclusions and sharing what I have learned.  This discussion must be prefaced with the caveat that I am not a medical professional.  I don’t have all the information about feeding tubes, nor can I give advice to a family.  I can only share with you my personal conclusions on this topic.  In addition, it is entirely possible that what I write in the next two posts, might completely change in the next 5 years because of presently unknown future events.  We don’t know what the future holds for us and our family.

I have learned that sometimes a inserting a feeding tube is entirely appropriate.  When a person has a curable disease and needs a temporary way of getting nutrition and hydration, then by all means. put that feeding tube in.  If a person is otherwise reasonably healthy, has a reasonable cognitive ability,  understands about the need for a feeding tube, and is in favor of it, then, again, I think a feeding tube is appropriate.  If a person has a type of cancer that has taken away their ability to eat, but otherwise the cancer is moving slowly, and that person is still enjoying life, then with that person’s permission, put in the feeding tube.

On the other hand, If a person’s quality of life is very low, if that person is just lying in a bed, not able to communicate, recognizing no one, is ready to give up this life, or does not have the cognitive ability to understand the need for a feeding tube, much less make a decision about it, then perhaps inserting a feeding tube, would not be appropriate.  If that person is in continual pain and must be kept sedated to the point of not being conscious, then perhaps inserting a feeding tube would cruel, not kind.

Taking out a feeding tube is also a very difficult decision and should not be made without considerable prayer and discussion on the part of the family and family member if possible.  If a family member’s physical condition is one of pain and suffering, if they are unconscious, if they have no cognitive ability, or if they are ready to die and have expressed a desire for the feeding tube to be removed, then take it out.  However, if it is taken out, then, family, make sure that certain things are done, such as oral hydration so that your loved one’s mouth does not dry out.  It is your responsibility to see to these details so that your family member will then pass from this life into the next with as little discomfort as possible.

My Biggest Regret About Our Decision to Remove Mother’s Feeding Tube

I have discussed this regret in a previous post, but am going to write about it once again because it is a very important part of this topic.  For some of you it may also fall into the category of TMI (too much information) because it is rather gross, but nevertheless this information is also relevant to our discussion.

We place Mother in the hospital on the Hospice Unit Sunday afternoon.  The decision to remove her feeding tube was made on Monday and by late that afternoon, it was gone.

After my sisters and I said goodby to our Mother, we decided to ‘let her sleep the rest of the way’, by keeping her sedated.  We could tell she was in pain, and decided there was no reason to have her awake any more than necessary.

By Wednesday afternoon the effects from the lack of nutrition and hydration had set in, and I noticed the change in her tongue.  It was swollen, and had a hard, leathery look to it.  It looked absolutely hideous.  There is no way it could not have contributed to her pain level. I didn’t ask the nurses about it.  I don’t know why.  I am usually attentive to all kinds of detail when it comes to hospital care, but I didn’t mention this.   A major regret on my part.

The next day I noticed that the nurses had brought in moist sponges on a stick. (I’m sure there is a medical name for this, but I don’t know it.)  I’m sure the sponges did some good, but my opinion is that was too little, too late.  The nurses didn’t talk to me about it either.

Recently I discussed this regret with a friend who is involved in a hospice program.  He shared something with me that I think is significant here.  There should have been more oral care done with Mother from the moment the feeding tube was removed.  If that care had been given, then her tongue would not have dried out at all.

I have no other personal experience with which to compare what happened to Mother.  I just wish that I had had the advantage of 20/20 hindsight beforehand!  Of course, there are no ‘do overs’ here, so I refuse to dwell on this and let it be a burdensome memory.

However, if my 20/20 hindsight will help some of you as you face a similar situation with you family, then it has all been worth it.