Would a feeding tube have helped my Dad?

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

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.

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.

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!

Thanks, Everishlass, for telling us about Cheyne-Stokes. I've heard of it but had forgotten. This is good information and comforting to many.
Carol

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.

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.

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.

My heart breaks for you as I know what you are going through. My dad died of cancer at age 90. He always talked of being 100. But when his time came he was ready and welcomed it. He made those terrible noises too. I don't really think he suffered. The feeding tube would have done nothing. My brother in law had a feeding tube and they turned it off a week before he died. He was not absorbing the liquid nutrition. It only laid in his throat and choked him. He had all those gurgling noises too. It was so awful to hear. He had the feeding tube for about 4 months and he did not gain any weight. He just kept getting thinner and thinner. He actually died of malnutrition. He had a diverticula in his throat which interfered with eating and he was too weak to swallow. I think you absolutely did the right thing. You obviously loved him a lot and please don't feel guilty. I am sure he loved you just as much and totally understood. Rest easy girl. You did your best. And yes go to grief counseling.

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.

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.

From what you have described and I would need to see actual medical records, but in all probability a feeding tube would not have saved your father, only delayed his pain and increased the cancer. As a nurse, I have seen cancers in the operating room with the patient cut open and what can happen is horrific. In a way, you were so lucky to have seen your father at his last moment and he knows you were there watching over him. I am sorry for your loss, but take some time to remember all the great times you two had together and do not dwell on the could haves and should haves. When someone is terminal, they will die. But know you will live on with his strength and do something positive with your experiences. God bless and keep you! Ferris

All the people here who are posting about this kind of cancer definitely know more about it than I do, but I will say this: I have come to have a lot of skepticism and a lot of anger toward doctors. I think that when they feel a person is old enough or sick enough, they don't approach the patient's health with the kind of care that they would if they were the one who was the patient. Furthermore, I've heard that starvation is a terribly painful way to die. Not that that necessarily caused the death here--I don't know anything about that. Ultimately, of course it wasn't your fault--the whole system is basically designed to bully those of us who don't have the medical knowledge to fight back, to insist on a different approach, etc., so that we just do what the doctors say. Bottom line is that you definitely didn't do anything wrong, but use this experience and what happened to move forward in your life with the knowledge and confidence that you will never allow anyone to dictate your health care choices to you or to anyone you love ever again. Commit to being an advocate for you and your family and never be afraid to get second opinions, tell a doctor you find their care unsatisfactory, move a patient to a different facility, etc. Don't be afraid to INSIST!!! Most of all remember, nothing here was your fault.

I have also felt this way about my Mom. Would a feeding tube have helped? The answer is, no. The doctors explained to me that a feeding tube will try to maintain the current weight and nutrition. However, the body may not absorb any of this, especially in older people. There are also alot of problems which can arise, such as infections and kidney failure. My Mom wanted to live much longer as well. It just wasn't meant to be. So sorry for your loss, but second-guessing yourself will only make you miserable. Hold on to the memories and know that your father is smiling down on you and knows you were right by his side until the very end.

Perhaps those of you who are not medical professionals would like to "blame" medical decisions that seem uncaring and cruel. However, instead of blaming the messenger, look at the behaviors of those with cancer and consider their lifestyles and what they did to their bodies in order to have cancer. My own brother would not stop smoking after he joined the Navy at 17 yrs., and at 55 yrs. died of lung cancer which could have been prevented had he quit. I know there are those who get lung cancer without having smoked, but add his alcoholic binges and multiple sexual partners added to his disease processes. Know that in medicine when someone is terminal, one will die and someone has to make the decision to stop all treatment (especially with a DNR in place). It is very difficult to see a patient die, and my condolences are with you.

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

To notenoughtime - I did not mean to imply your father did anything to hasten his cancer diagnosis. I was referring to my brother. And I was not referring to your comments, it was someone else. However, I am sorry for your loss, and wish you the best in your coming days.

I dearly loved my Dad too, and I cherish his memory! He was 85 when he went to heaven and I would have loved to have him live forever. He had bladder cancer and it spread to his prostate and his bones. He was kept comfortable, clean and warm. He was able to die peacefully with dignity. I am so sorry that things did not go well for your Dad. please rest and know that he knew you loved him... take care!!!

Dearest Notenoughtime, You are experiencing the post mortem guilt that takes us to another level of pain. Please seek counseling for yourself regarding the loss of your father. I am very sorry for your loss but more importantly, your suffering. ....
To answer your question, Yes, I would have insisted on the feeding tube as well as the IV. Of course there could be problems, such as infection at the site, etc. but so what. They could have dealt with that.
My own father was dying of Ischemic Cardiomyopathy with CHF, but I insisted on the IV along with my favorite med....the hot-water bottle at his feet. He died a peaceful, quiet happy death with a smile on his face. Prior to that he was in a fetal position and withdrawn, dehydrated and cold. As soon as the doctor ordered the IV, he straightenend out and was warm to the touch.. We are all going to die someday; why not make it comfortable.

My heart goes out to you. I totally agree with all the above posts concerning thinking we have the power to control life/death and accepting death of a loved one, assuming we could have done something to save them. I have been in your shoes, 3.5 years ago, my mom stopped eating due to dementia. She was walking with a walker, I arranged 24 hr live in help, but surely didn't think I could let her starve just because her brain didn't function properly, to help her to eat and survive. I made the decision to insert a feeding tube in her belly. Mom is still around, but the quality of her life has really declined, especially in the last 1.5 years. She can do nothing for herself, has lost her speech and dignity. I made sure she still lives in her home.
Her loss of dignity for such a long time is something that your vital, productive, Dad did Not lose. He died, as he lived, with the memories of a vital, productive, sane man. These are your memories that you will cherish and remember. Not the memories of a disabled, vulnerable man who is suffering with Cancer, and decreased quality of life. The suffering of your loved one is what you should hold on to when you think that you should have made the doctors put in a feeding tube. He did not just have pneumonia. He had Cancer. I know when my dad was sick with untreatable Cancer, I did everything I could to see if there was a cure. No Chemo would have helped him and the chemicals in the Chemo would have injured his heart. So, in a nutshell, you are suffering from Grief of someone you loved very, very, much. You feel responsible for his death, something that you had no control over. Cherish those wonderful 91 years you spent together, and know that at least your Dad died with the dignity that he deserved and your memories of him are good. He would not have wanted you to see him deteriorate and you would not have wanted to see him suffer with the painful Cancer. It is great that you are on this website. It helped me when I suffered the same guilt, but in the opposite way. I felt guilty for putting a feeding tube in my mom and dealing with the resulting reduction in the quality of her life, as her brain continued to deteriorate. Please continue to talk to people about your feelings. A therapist could help you sort out your feelings, but the Grief process takes time and there are stages that you have to go through in order to accept your loved ones passing. I send you my blessings and please speak to others about your loss and get support. If you find that you are having sleep, appetite issues and depression for more than a few weeks, please seek some professional help to get you through this.
Take care.

Having read all the posts in answering Notenoughtime's question, I still believe that a feeding tube would have made him more comfortable. We are NOT talking about a reversal of health status. He was dying. The cancer was terminal. We are only talking about the last few days of his life.........We are only answering the question about the feeding tube. Let us go and be with the Lord.......Now and at the hour of our death, Amen.

Ferris, I can see where the anger with your brother for abusing his body is still there and still hurts, but this was not a good place to vent it! It was good you apologized. (Hey, I've inadvertantly offended folks on here too.) And as I first read this post I also shared the fear that maybe the docs did not understand that a 91 year old might still want to fight to live another day, and they might not have been aware of the quality of life but only the "number" (age)...that "feeding the cancer" part seemed like a line. But in the setting of a very advanced esophageal CA, and maybe you can ask where all it had spread and what stage it was considered, chances are the appetite would be nil, and unless the person was actually hungry, just being reasonably hydrated would have been enough to maximize comfort. Some sources even suggest that allowing mild dehydration near the end will actually reduce secretions and may be more comfortable as well if the person does not feel thristy.

I don't see how you could have gone against all the healthcare professionals who really felt it would have been wrong to put in a feeding tube or give hyperalimentation (that's what you meant by the femoral line in the leg, right?)
while you cared as much as you did and would not have wanted him to have a procedure that didn't help or could have hurt. And, for him to have lived only a week if he was hydrated is not the result of starvation alone by any means...but when you say he was starving was he complaining of hunger or just not getting feedings? And if you remember, was it just saline or was it D5 half normal or a fluid with some glucose in it (would have started with a D)?

You could have the option to ask them to go through the medical records with you and see if what you learn eases your mind. Or, if you find out the cancer was in an earlier stage and could have been treated but they did discriminate purely on age, you could be angry with them and not with yourself! But that seems really, really unlikely, esepcially since he was not even diagnosed until he had pneumonia and aspiration because the esophagus was already so obstructed.

I am so sorry for your loss. More time would have been/could have been a great thing.

I found a link that also might help a little: www.cancerresearchuk.org/cancer-help/coping-with-cancer/dying/what-happens-in-the-final-days-of-life

esophageal cancer is cancer. My father in law had it, with feeding tube. He had the "Cadillac" Surgery. They cut him from front to back, took out cancer, reattached the esophagus to stomach. He did this so he can see his grand daughter and wife. He had the feeding tube..... He had dalaudin, or whatever that was, he hallucinated like crazy. ANSWER IS NO IT DOESNT HELP, IT ONLY PROLONGS THE SUFFERING, well in our case it did. He did not feel the same afterwards..He apologized to his wife, he did not want to live like that. Tubes are no fun... WE ARE HUMAN... DON'T FEEL GUILTY... YOU DID NOTHING WRONG.... PERIOD!!!!!! I truly believe in HOSPICE..... I have signed up with my mother. Hospice is guiding me in what to do and not to do. Hospice is helpful, even just talking with them over the phone....Take care.

i think you did a wonderful things with your father who was 91. i commend you. my dad decided to have a feeding tube in his stomach. he has now. and he decided to stop eating and drinking. now he is still doing ok. he is 77 and needs to be watched. my mother is 70 and tries her best, but wanted to and still does want to take off , running from doctors to hospital and stores and buying junk. my mom has lukemia in remission. she takes insulin 3 times a day. my sis thinks dad will last long. but he was a foody before this feeding tube was put in. my mother is a hoarder so it is hard on me to see him be put in a house of filth. i have tried many times to clean for her. it just is a failure on my part. i love my dad very much. all i can do is be there when my mom or dad needs me when they call. i know how to give him his liquid and meds, o have the same feeling as you do but i know that he wont be living very long. i also have that feeling of death around me. i know that god will take him soon. bless you with what you went through, and thank you for letting me read what you you went through. it is in gods time not ours.

not enough time, I lost my daughter to Leukemia June 8th. Trust me when I tell you that the IV's did prolong his life. It's just that the cancer was too advanced. Feeding tubes would not have added anything more. Your father concealed his symptoms, he avoided earlier treatments and chose to live life by his own rules. My daughter also spoke about vacations, planning two years down the road even when she was two days from death.
Your father wanted you to look to the future, not to the loss. Follow his directions and take that vacation; he will be with you along the way.

My sympathies for your loss. The "what-ifs" can be hard to deal with. What if your father's cancer had been diagnosed earlier? What if he'd gotten into a clinical trial? What if he'd been treated at another hospital, and so on. There's no way you can go back and make other choices, and dwelling on it won't help you.

From what you describe of your father's condition, a feeding tube wouldn't have done what you;d hoped it would do: build up his strength so he'd have more years of life. It would only have prolonged his suffering. I know it's hard to see it this way, but 91 years are more than most people get. You were fortunate to have him with you for so long. My mom only made it to 66.

I agree with Eyerishlass that the sounds your father made that disturbed you so were Cheyne-Stokes, and not an indication that he was suffering. Being born involves a struggle, and so does dying, usually. Few of us are fortunate enough to slip away painlessly in our sleep, at age 105. It's a natural transition, in other words, but of course you were unprepared for it, and it must have been frightening.
It would be wonderful if everyone had an advance medical directive, so their families knew exactly what their wishes are if they become unable to advocate for themselves.
Please take care.