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I just posted this by mistake as an answer to someone's question, so have to redo it here. I am just wracked with guilt over not forcing the Dr's to put a feeding tube in my Dad. He was originally admitted to ICU with pneumonia & difficulty swallowing. After being given a swallowing test,he aspirated & was given a ct scan & was told he had esophageal cancer.He recovered from the pneumonia, I was with him 24/7 in hospital, and I asked many times for a feeding tube because he couldn't swallow and was starving. He wanted to live & recover, and fought bravely. The Dr's refused to give him a feeding tube and said "it would only feed the cancer, he wouldn't get any nutrition from it, it might get infected, or pulled out. They just kept him on a saline/salt water IV and told us to move him to palliative care after 2 weeks in the ICU and not helping him (except for the pneumonia recovery) As we were about to move him to palliative a Dr. said to me " you do realize this means we'll stop trying", when they weren't trying anyway, he was just laying there on saline and a small amount of dilaudin, and it was the Dr's who told us he'd be better off in palliative care! When we did get to palliative, my Dad mustered all his strength to fight through the sedative effect of the dilaudin and asked me "what happened?" After the aspiration incident he was mostly coherent, only sometimes confused. Before all this happened, he was in great health, still drove,gardened, went for walks, & had planned a vacation with me, even though he was 91 he definitely wanted to live a lot longer and had a strong, optimistic outlook. In palliative he only lasted a week. No nutrition, only a saline IV, and ever-increasing amounts of dilaudin which kept him asleep until the final night when the IV was removed because of edema/water in his lungs. I'll never forget the awful noises as he struggled all night to breathe. I dozed off for a minute, and the nurse woke me up and I'll never forget the fear in my father's eyes & the horrible gasps as he left this world as he stared into my eyes. I believe he tried to go when I dozed off, so I wouldn't see, but the nurse woke me up. My question is, to anyone out there, would a feeding tube inserted into the upper thigh (he was too weak for a direct line and because of the mass in his esophagus, this was the only option) have helped him to recover some strength/weight and possibly either gone home with a permanent feeding tube, or enough strength to have the procedure where they place a stent in his esophagus so he could've swallowed again. He would have definitely wanted either of these options, he wanted to live either way. I feel so guilty, and it's worse every night, I shouldn't have believed the Dr's when they said he'd get no nutrition from the feeding tube, and "it would only feed the cancer". Please, has anyone been through this and would a feeding tube have helped?
I'm so disappointed in myself, I love my father very much and feel that I failed him greatly. This guilt is worse every day and I will never forget those last few minutes of my Dad's life or the look in his eyes and the awful breathing. Also, the Dr's said that he wasn't suffering even though he had zero food/feeding tube for 3 weeks. Has anyone else had to go through this? And the guilt?

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Hi Notenoughtime,

I'm so sorry about what you're going through. Please let go of the guilt. Most of us feel that we could/should have done something different no matter what we do.

I want to state emphatically that I'm not a medical person so I can only give you my caregiver's opinion based on what I've read and my personal experience.

Pneumonia used to be called the old person's friend as it was an easier death than what may come after that. Of course, now they can medicate for pneumonia much better but that doesn't always have great results for the very old.

My mother-in-law had pneumonia and normal procedures were tried. None of that worked so they asked permission to give five shots of something very strong. That brought her out of the pneumonia, but her last two years of life after that were miserable. It's now my belief that the pneumonia was meant to take her. Still, we can only do our best and that's what we thought we were doing.

Your dad was 91 and likely the doctors didn't feel he could benefit from the tube feeding. There are times when that does help people, but often at his age and after what he'd been through, there is significant risk without a lot of hope that it will do more than keep his body alive longer. That's not the same as recovering. Yes, there are exceptions, but considering his age, I'd say that would be rare.

They found that your dad had esophageal cancer which is a very painful way to die. I suspect the doctors truly felt that palliative care now would save him much misery since he would die from the cancer anyway.

I'm somewhat surprised that palliative care didn't keep him more comfortable, however. I've only had experience with hospice and then only when my parents were more than ready to die. I think the doctor was required to tell you that they were no longer going to be trying to make him better, but he only did that after what they were trying in the hospital wasn't helping him.

In the end, a feeding tube may have kept him alive longer. His quality of life may or may not have made that a good thing. I hope that you can get some grief counseling and learn to not blame yourself. I think you did everything that you could.

Please check back with us and let us know how you're doing over time.
Carol
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Honey I don't believe a feeding tube would have extended your fathers life. It might have caused a whole lot of new problems, infection, more aspiration incidents and pain from surgical insertion. I would guess that his doctors felt like the cancer was too advanced to fight affectivelly. It's disappointing that they didn't have someone explain things to you more clearly. Your Daddy became ill and died within a few weeks. That is probably better then suffering for months. You loved him well and I'm sure he knew it. Rest easy.
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Your dad may have been experiencing Cheyne-Stokes breathing which occurs at the end of someone's life. It sounds as if the person is laboring to breathe but they're not. It's part of the body shutting down and is a universal symptom of that process.

No one can say whether a feeding tube would have helped him. Toward the end of life most people can't eat and are at risk for aspiration pneumonia if they are fed or given fluids.

Esophageal cancer is a very painful and agonizing way to die and is very, very difficult on the family. Having a feeding tube inserted may have prolonged his life a little but at what cost? Dad would have been alive but in agony or you could have done what you did and let him go before he began to suffer. I think you did the right thing by your dad, I really do.

However, if the grief and regret is consuming you grief counseling might be beneficial. Hospice provides grief counseling for free or you can get your own counselor.

I wish you didn't feel guilty and I won't say, "Don't feel guilty". But you did all the right things. Your dad was 91. He had had pneumonia and was then diagnosed with cancer. Prying his esophagus open with stents so he could swallow again sounds brutal.

I'm sorry about your dad. It sounds like you loved him very much. The end of life is always confusing and heartbreaking and stressful for us, the family. I think it's normal to question our decisions.I don't know when your dad passed away, it might have been very recent. If, in time, you find yourself still upset over how he died I hope you seek out grief counseling.
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notenoughtime, you and the doctors did the right thing. Esophageal cancer is one of the bad ones, and the doctors knew there was little they could do. What you and the doctors did showed great humanity. A feeding tube may (or may not) allowed your father to live longer, but the quality of life would be very poor. I think your father's doctor's advice was the best and the kindest they could have given. I am so sorry that you didn't have enough time. He sounds like he was a wonderful man to have you love him like you did. I believe we'll see our loved ones again one day, so missing him will be a temporary thing.
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Not enough time: Carol's response is very good. Your father's body was already ravaged by the cancer. The pneumonia was a symptom of that. The doctor's were being realistic. It is hard for them to give you the medical advice there is nothing more they can do. Prolonging agony by giving him a feeding tube was not going to change the outcome. It is so important for people to have medical directives to stipulate whether or not they would want a feeding tube if they were going to die. You are very caring and much love shines through in your words. You did a wonderful job! Grieving process takes time... Hugs to you!
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The desire to feel like "at least we tried" is very strong. However, in this age of high tech medicine, I really believe that your Dad's doctors were showing more humanity than many of their profession do these days. A 91 year-old man with very compromised health is not a candidate for a feeding tube. He was fortunate to be under the care of doctors who were thinking of his best interests instead of the interests of the hospital's billing department.
Let go of your guilt. Death is the final transition of our lives and, nowadays, many of us are denied a good one. Your father had a much better death that the one he would have suffered succumbing to cancer after torturous and futile attempts at feeding and infection fighting.
You were a good daughter and fought for your father. You were lucky to have had caring doctors in charge of his care. The healthcare system did however fail at supporting you. A doctor or nurse or social worker should have spent a little time thoroughly explaining the dying process. The body shuts down at the end of life and there is no feeling of hunger. The final breaths we take sound labored and painful, but aren't. In fact, all the latest research says that intervention in the process is what causes pain and discomfort to a dying person.
Not all doctors are particularly skilled at communicating with families. "Do you realize this means we'll stop trying" is a formality that has to be addressed before beginning hospice care (though it certainly could have been asked in a better way). I remember my uncle's wife being horrified that one of the first questions they asked by uncle when he was transferred to a hospice was "are you ready to die." He seemed relieved to answer it.
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Please don't feel guilty. My grandmother insisted no feeding tube. My parents have requested the same (though my Dad has passed on due to Kidney disease). I can't imagine how hard if must have been for you to watch your father pass, but I wouldn't want to be kept alive by artificial means. I just pray he didn't suffer too much. And now it's time for you to stop suffering. There are grieving support groups and they are helpful. Please take advantage of one. I wish I could have, but when my Dad died, my Mother was acting very odd. It turns out she has Alzheimer's. I still cry for my Dad (he died December 15, 2011), but I am going to put my Mom in care because it is killing me, and my older brother does nothing to help ever.
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You are taking responsibility that isn't yours. People sometimes do this because it feels better than feeling helpless! As if there were a tug-of-war between life and death and you had the power to make life "win" a little longer, so you have to feel bad that you didn't use that power exactly right. But you didn't have the power in the first place -- life and death are both bigger forces than we are! I am so glad to see the other answers here.
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Apparently your father's cancer was so advanced at the time of diagnosis that there was little to nothing that could be done. I had a middle aged friend who died of esophageal cancer last year. He went through a terrible and painful surgery to remove the mass and even so, he only lasted about 8 more months and then the cancer reappeared in his brain and he died very quickly after that - within 3 - 4 days of going into hospice.

A feeding tube is not a good option for someone who is already in the process of dying and in fact, it can cause a great deal of pain and distress. And honestly, based on what your wrote and the doctor's reactions, that's where your father was. He was dying and the doctors knew it and knew that the feeding tube would be a terrible thing to do to your father.

What many people are unaware of is that the process of dying usually starts a few months before the person actually dies. Towards the end, in the last few weeks of our lives, our bodies become unable to metabolize food, so being fed at this time with a feeding tube leads to great additional pain and distress. The signs of impending death are there, but most people who are not medical professionals are unaware of these signs. I'm certain that this is why the doctor refused to consider a feeding tube and the fact that your father died so quickly after being placed in palliative care indicates that the doctor was right, otherwise he might have lived on up to 40 days without food.

Finally, I don't know what religion your are if any, but hope that it will be of comfort to you to know that the Bible says that even before we are conceived, all the days of our lives have been planned for us, including the date and time of our deaths.
PSALMS139:16
16 Your eyes saw my unformed substance;

in your book were written, every one of them,

the days that were formed for me,

when as yet there was none of them.

Nearly every major religion in the world has a similar belief. Extraordinarily, this ancient thought on the substance of our lives has been confirmed by modern science which has proven that our bodies know when they are supposed to die from the day we are conceived. Every cell in our body is preprogrammed for this and hands the programing down to successor cells as the cells divide, live and die during our entire lives. Your father died exactly when he was meant to die, in the way he was meant to die and there's not a thing in the world anyone could have done about it.

There is much to be grateful for because your father's death was natural and as intended instead of an unnatural death.

Instead of torturing yourself and wondering if something could have been done, please take joy in the fact that your father lived to be 91 years old. That is an awesome accomplishment and something you can really be proud of. How wonderful that you had 91 years with him in your life! Take further pride in the fact that his disease trajectory was so very short and that he enjoyed wonderful health and was active right up until the last few weeks of his life. That's amazing! My own grandmother died under similar circumstances. At the end, she quit eating on her own and quit drinking. Her body was so old she went into liver failure and died within 2 weeks, just like your father. Extreme measures would not have helped her either. I believe that people like your father and my grandmother are the lucky ones. They didn't have to suffer a long protracted deaths and enjoyed great health into their 90's. How exceptional and wonderful that is! How fortunate people like you and I are to have that in our family lines for we, too, may well have inherited the genetic predisposition to live out our lives in such a way.

I recommend that you attend grief counseling at a church or even with a psychologist. As you come to understand the process your father was in, you will know there was really nothing you could have done to change things. We have no control over death. We can only control our reaction to death.

It takes a while to move past the death of a parent. It really is the most profound and defining moment of our adult lives. Here is a book which, I believe will be of assistance to you:

"The Orphaned Adult: Understing and Coping with Grief and Change after the Death of Our Parents" by Alexander Levy

Take care...and my deepest sympathy in your loss.
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Thanks to all of you who have taken the time and given such sensitive help, I truly appreciate your kindness.
Exception being ferris1 who is way off track with her last comment about me blaming the Drs. My question was if I had had my Dad put on a feeding tube, would it have helped him, because I feel guilty about not doing that. Also, my Father NEVER SMOKED, ONLY HAD AN OCASSIONAL SOCIAL DRINK, walked every day, took vitamins and lived a healthy lifestyle. Your remarks about people basically getting what they deserve for the life they have led are cruel and uncaring, especially when the person is 91 yes old. How do you think he managedto live that long if he didn't live healthy??? I reported your post because so many good, caring people's comments were just beginning to help me past my extreme guilt about not having done enough to help the person I've loved my whole life and who was an extremely kind and good man. I don't know why you would post something so hurtful, and probably hurtful to others who have lost someone to cancer. This was not my "patient" as you closed your horrible comments with, this was my beloved PARENT.
TO EVERYONE ELSE, THANK YOU SO MUCH FOR GIVING ME THE HELPFUL, KIND, INSIGHTFUL COMMENTS THAT HAVE HELPED ME BEGIN TO FEEL A LITTLE BETTER ABOUT NOT GETTING A FEEDING TUBE. And thanks for the hugs, you are all angels to care enough to help a stranger who is suffering. Thank you
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