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.

Our Family’s Next Feeding Tube Experience

When Daddy was diagnosed with Esophageal Cancer, one of his doctors mentioned that at some point the cancer would close off Daddy’s esophagus, and he would be unable to eat.  At that point we would need to make a decision about whether or not to insert a feeding tube into Daddy’s stomach to keep him alive.

After Daddy made it through two rounds of chemo and it became evident that the cancer was still growing, we decided not to do any more chemo.  Because Daddy’s mind was still clear, I determined that  It was time to talk to him about the feeding tube.  I reminded him about the doctor’s comments several weeks earlier.  I told Daddy that he didn’t need to make a decision right then, but just think about what he wanted to do when the time came.

Daddy’s pastor came to see him on a regular basis, and we always looked forward to his visits.  Bro. Burtis was always very perceptive to Daddy’s moods and never stayed long unless he felt like Daddy wanted to talk.  During one particular visit, Daddy asked Bro. Burtis to pull up a chair which meant “I have some things on my mind, and need to talk to you”.

After Bro. Burtis was seated near Daddy’s bed, Daddy began to talk about the feeding tube dilemma, stating that though he wasn’t sure what to do, but felt like he would probably refuse it because he didn’t want to be just kept alive.  Daddy then asked Bro. Burtis to share his opinion of should be done.

Bro. Burtis so wisely and gently shared that flatly deciding to refuse it at this point was not wise, because there were really many aspects of the results of having or not having a feeding tube to take into account.  For example, if the cancer closed off his esophagus, but otherwise he was still feeling good and felt like he would have more time to live with a reasonable quality of life, the perhaps accepting the feeding tube would be a wise choice.  Hmmmmmmm.  I know Daddy had not thought of it in that respect and I hadn’t either.

As it turned out, we never had to make the decision because in the end Daddy had a stoke which ended his life.

From this experience I learned that refusing or accepting a feeding tube for myself or a precious loved one, needs to be based on several aspects of the situation.  If a person will have a reasonably good quality of life and be able to have pleasure from being with people, then perhaps a feeding tube is appropriate.  If that person wants a feeding tube, then their wishes should be granted.

If, on the other hand, that person is already past the point of knowing anyone, or is not conscious and will never be conscious, if that person is no more than a person lying in a bed, or if that person has expressed the desire to never have a feeding tube, no matter what, then I believe that inserting that tube is cruel.

One of the most important lessons I learned from this experience and from Bro. Burtis’ wisdom, was that this type of decision can not be made ahead of time in most cases.  It is best to make that decision and cross that bridge when you come to it.

Our Family’s First Experience with the Feeding Tube Decision

Being in his late 50’s he was considered young for the disease. My father-in-law, Olius began to show the symptoms of Alzheimer’s about a year before our son was born. I don’t ever remember him saying our son’s name. Instead he called our son, ‘old chap.’ It was very sad.

My thoughts and feelings about that time in my life is for another post. For now let’s just suffice it so say that I was in my late 20’s and my view of life is considerably different that it is now.

After several years of having this disease, his ability to talk, walk, eat, and recognize anyone was gone. It all happened so gradually, about 10 years from the first appearance of the symptoms until death. In his case the progression of the disease was agonizingly slow. At that time there were no Alzheimer’s medications that would improve his quality of life.

Again leaving many of the details of the progression of his illness to another post, the day came when he was unable to eat or drink. My husband, Rick, and my mother-in-law, Mary, (Rick’s mother) were at the hospital with him when the decision was made to insert the feeding tube. I was not there. Rick told me that the doctor came and asked Mary whether or not they wanted to put in the feeding tube and she said yes. That was it. No questions, not discussion, no debate.

Olius then existed with a feeding tube for approximately a year and a half. He could not sit up. He could not walk. He could not talk. Even though he would open his eyes, he could not focus on your face or give any sign that he recognized anyone. He could give no sign that he understood anything that was being said to him. In my opinion the feeding tube allowed him to just exist. Not live.

I do not believe that he would have wanted it this way. However, because he was never told that he had Alzheimer’s, he had no opportunity to express his wishes to anyone. It was not talked about. Period. Mary lived in denial until she could deny it no longer. By then it was too late for him to let us know his wishes.

His feeding tube was never removed. It stayed until his body, no longer able to function, shut down.

My feelings than and now are that the feeding tube was not helpful. It was hurtful. It was not kind. It was cruel. The feeding tube extended the dying process his body was in for well past a year. Even though he was given excellent care, he had no quality of life. Again, it was very sad.

There were several things that could have and should have been done as a family. First of all, the denial was helpful to no one, least of all Olius. The disease should have been recognized, admitted, and openly discussed. Our efforts in this regard were rebuffed by Mary. It was frustrating to all of us, but it was most of all not fair to Olius.

Additionaly, as a part of the dicsussion there should have been questions asked by health care professionals about the disease, its progression and what decisions were going to need to be made before the end came. Again, because of Mary’s denial, no questions were asked. Basically the family was ‘flying blind’ through this ordeal.

Also, when it was time decide about whether or not to insert a feeding tube, there should have been questions asked, discussion and even debate. Would Olius have wanted this? I think not.

In all fairness, Rick and his brother did the best they could in a difficult situation. They were young men at the time and their father, also young, was dying. It was hard. Would they do things differently now? Of course. But at this point, what do you do? Nothing can be changed, so you just go forward with your life applying the lessons you learned to future experiences. They have done that.

For families facing this most difficult of decisions, whether or not to insert a feeding tube into a precious loved one to sustain their life, please, please talk about it. Ask questions. Ask your doctor questions. Ask each other questions. Discuss. Debate. Do not make a decision one way or another without thinking about all the effects your decision will have on your ill family member and the rest of the family as well.

In my next post, I will discuss our decision to put a feeding tube in Mother.

Feeding Tube Discussion

This post is a response to a comment I received a few days ago. The comment was made on my post titled “Time to Say Good By to Mother” https://deborahfoster.wordpress.com/time-to-say-goodby-to-mother/

The comment came in the form of a post on another blog or website.

http://news.technophobiac.com/2008/03/27/how-not-to-say-goodbye-to-a-loved-one/

This comment was very respectful of us as a family and very understanding of our sorrow and grief.  I appreciate that. I also understand the writer’s position on the debate of whether or not to remove a feeding tube from a terminal patient, and do not disagree with the statements made in the comment.  I must, however, make one statement in my defense at this point.  Rightly or wrongly,  I did not know, yes, even in this post Terri Shiavo era, the physical effects  dehydration would have on my mother’s body.  At the time of Mother’s death, April 15, 2005, Terri Shiavo’s case was still very much in the media, but somehow, I just don’t remember those details being stated.  At any rate, the truth is I did not know and was not told about what she would experience as her body with through the process of dying resulting from the denial of hydration and nutrition.

As a result of this comment, however, I have mentally revisited the days of agony in which we first made the decision to insert a feeding tube in Mother and then the day in which the decision was made to remove it.

I also realized that almost everyday there is someone who reads my posts about Mother’s feeding tube as a result of a internet search for information about this subject. Additionally, realistically speaking, almost every family will one day face the feeding tube dilemma, as they make life and death decisions for a precious loved one.

It is so hard.  I don’t have enough wisdom to give every family advice.  However, I plan to do some writing about what we learned from this experience and also another time in my life when my father-in-law, dying from Alzheimer’s Disease, existed for a year and a half because of a feeding tube.

There is no doubt that this discussion of feeding tubes will be very emotional for all of us who have had to face ‘the decision’.  Please feel free to share your thoughts and experiences.  I know there are families who are wrangling with this delimma even as I write this post.  It is my prayer that my words, our discussion, perhaps even debate, will be helpful to you and your family.