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My dad developed MRSA endocarditis with severe sepsis but was responding to antibiotics....but he stopped eating and drinking during this 2 week illness.....he was kept going with IV fluids and dextrose but his albumin was 1.5 - apparently that signifies severe malnutrition....since my dad was a voracious eater before this illness = his weight loss didn't look dramatic...he was a strong muscular almost 90 yr old....but they told me he would need a feeding tube before going back to rehab for 8 weeks of IV antibiotics...…..I couldn't imagine him in a rehab, bedridden with picc line, feeding tube, stage 3/4 bedsore and urinary catheter for what I was told MIGHT work for healing his endocarditis......but perhaps I should have sent him there without feeding tube...since im reading he could have survived a long time without eating...I feel like I killed him prematurely with hospice...I also was never told about parenteral nutrition ie via vein.....I always thought tube was thru the nose and didn't want him to have that pain....but parenteral might have been ok.....I wish I was more educated on all this when I made hospice decision....after the fact, his dr told me the feeding tube wouldn't have made a difference (why tell me then?) and that parenteral would be prone to infection, etc and it would be a revolving door back to hospital from rehab, etc....so confusing what they tell you before and then after they die!

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I’m sorry for your loss along with the doubting and self recrimination you’re going through. My mother had a gastric feeding tube placed following a hemorrhagic stroke, based on the advice of several doctors telling us there was excellent hope of recovery and she just needed the feeding support as she got better. We consented to the minor procedure of having the tube placed. She never got better despite much rehab, and over time she got worse. It was beyond awful to watch, a long horrific death. If we’d known that the great hope of recovery wasn’t to be the tube wouldn’t have been placed, but we did the best we could for her based on the medical advice we were given. As for your dad, he had an overwhelming infection, sounds like no one was giving you great hope of recovery, and a feeding tube or other artificial means of eating would have only prolonged his life but not made it better or been healing. Doctors are obligated to present us with all options, even the long shots. Your dad had multiple issues that would have been too much for a far younger person. I hope you can find peace in knowing you did your best for him, I’m sure he knew your love
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I am sorry for your loss. The 'what ifs,' and 'could haves' can drive us crazy! Your dad had a major infections and having a feeding tube could cause another infection or made his infection worst. The chances of your dad making a full recovery was low.

As Daughter stated "Drs are obligated to give the LO every options." Your dad's Dr couldn't tell you that a feeding tube wouldn't have made any difference in the beginning because they (Drs) can not influence a person's decision. Believe me there are Drs that would love to tell people their opinions but they can't. The decision has to come from the pt or family.

My mother had a surgery in 2012 and was sent home with a feeding tube and she told me that it was painful and she never wants one again.

You did not kill your dad. You made the best decision in a very difficult situation.

Your dad had a long life and now he is at peace. Try to focus on the good memories.

Hugs!!
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Mhillwt Apr 2019
thank you.....it is hard ie the what ifs......im sorry about your mom as well......ie that it was painful etc...
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First Hospice would not have excepted him if they felt more could have been done. My daughter told me to never OK a feeding tube for my Mom. Sometimes it only prolongs the inevitable. You said he stopped eating and drinking. Signs of the body shutting down. Sepsis is really bad.

I think you did the right thing letting him go peacefully. Sometimes thats the best gift we can give someone. He was 90 and lived his life.
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Mhillwt Apr 2019
thank you......he was accepted into hospice because I had to agree to stop the life saving antibiotics that MIGHT work.....we were going to continue the 8 weeks of IV antibiotics but when he stopped eating and drinking we decided on hospice....otherwise if he were still on antibiotics he would not have been accepted into hospice......this is where my guilt lies …..im not sure if stopping to eat and drink is always pointing to body shutting down? I think when you are on so many antibiotics and are sick - you just don't want to eat?
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thank you and IM so so sorry about your moms horrific death....watching my dad for just a few weeks traumatized him so I cant imagine!
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He was 90. Stop beating yourself up. My other turned 92 and stopped eating about 3 months ago. She might drink some hot chocolate and a little ice cream now and then, but she is still alive. She has lost a lot of weight and stays in bed most the time now. She is tired and weak. I feel so sorry for her. I would not want to prolong her life if it caused more pain in any way. Your father had a lot of issues. I would agree that you made the right decision. At least did not continue to suffer for months more before dying.

My Mother's false teeth became very loose a while back and I thought about getting her a new pair, but after researching and getting advice from others, I figured at 92, it would be much more trouble and frustration for her to adjust to a new pair of dentures, so for her sake, I decided not to. If she were much younger I would have made a different decision.

I think today, so many people are kept alive a lot longer than they would have survived naturally. I know I would not want to have my suffering prolonged at that age.
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Feeding Tubes are money makers for Doctors and Hospital. They know they may not work, but it's money anyway.

I'm so sorry for your loss.
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You made the correct decision by allowing your father to pass away with dignity.

You are correct about low albumin reflecting poor nutrition. Normal albumin is between 3.5-4.5 & dad was 1.5. Low albumin is associated with increased mortality. The possibility of C.diff is high as well due to prolonged antibiotic therapy and Lord knows how hard constant diarrhea would be for your father to cope with.

Parenteral nutrition takes months to be effective. To me I am not sure it is even worth the cost (& it is expensive). You wouldn’t see a change in his nutritional status for a long long time. Plus it has to be given in a large vein and your doctors were correct in pointing out recurrent infection is an issue. Parenteral nutrition is high in glucose which is perfect feeding ground for bacteria.

He lived a long life. His body fought with all his strength but at 90 he might not have had much.

Pleass don’t feel guilty. You allowed nature to take its course.

I am so so sorry for your loss.
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Mhillwt Apr 2019
yes true. and thank you...I guess he was so agitated and delirious mentally that I couldn't gage his physical...when I got his medical records(after he died) - all his vitals were ok until the very end ie BP, Respiration, etc. with exception of albumin being low due to not eating....he never went into septic shock, etc....so I keep thinking - would a person who is dying have good vitals till the end?
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Basic answer: regardless of age, feeding tubes are worthwhile IF a patient has a realistic chance of recovering an acceptable quality of life.

BUT I do not think that can have been true for your father.

I can't know this, I wish I could say something absolutely certain, but it sounds as though your poor father was so sick that even if he had got past the endocarditis, been lucky with that slim chance, he would have been so destroyed by the infections that his quality of life and his life expectancy would have been dreadful. You would have put him through invasive, distressing treatments for the sake of more suffering for a little while longer.

I am as sure as any non-qualified person can be that you made the right decision, in spite of how difficult and complex the decision was to make. I'm so sorry for your loss, and for how it happened, but I honestly don't think anyone could have handled it better - no matter how theoretically knowledgeable you might be, when it's for real and it's your Dad nothing is simple about these choices.
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Mhillwt Apr 2019
yes true....I guess he was so agitated and delirious mentally that I couldn't gage his physical...when I got his medical records(after he died) - all his vitals were ok until the very end ie BP, Respiration, etc. with exception of albumin being low due to not eating....he never went into septic shock, etc....so I keep thinking - would a person who is dying have good vitals till the end?
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IV antibiotics for 8 weeks is pretty serious. Your dad had no chance to recover from all his ailments. You did the right thing, and that's what the doctor told you only after the fact. He has malpractice insurance regulations which make him tell you all the options, not what he would do. You made the right choice and I'm sure your dad is thankful. He's in a better place and his struggle is past.
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My Mom got very agitated near the end. She was given something to calm her but made her a little dopey. My daughter says agitation is not good for them so choosing to calm her was good. A week later she wouldn't get out of bed, eat or drink and closed her eyes for good. Hospice was called in, my daughter checked her out and agreed. She was gone 6 days later, peacefully.

Sometimes no matter what you do, its their time. My Mom just wanted to be left alone. Nurse tried to put a bp cuff on her and she pulled her arm away.
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I am so sorry for your loss.
My dad had bacterial endocarditis when he was in his early 40's and, other than his heart issue, he was very healthy. With 2 months of aggressive antibiotic treatment he survived but, as is common with bacterial endocarditis, suffered damage to the heart and had to have an aortic valve replacement.
You DID NOT kill your dad. Had you consented to the feeding tube and antibiotics, your dad may have had to go through a long agonizing journey of cardiac issues, procedures and treatments. There were no guarantees it would have resulted with no further consequences. You had valid reasons and you made the right decision at that time and there is no goodness or value in rehashing your decision. If/when you reach the age of 90 years old and have had a relatively happy and productive life would you not want to leave this earth peacefully and with dignity as opposed to being put through months of unbearable treatments and end up a weaker, damaged version of the person you were? There comes a point when we have to stop the heroics and let nature/god take its course, even as hard as that can be for us.

My family is facing a similar decision now, mom who is in Stage 5 Alzheimer's Disease suddenly took a turn for the worse a month ago. She declined suddenly with increased confusion, anxiety and agitation, lower extremity weakness and headache. They finally diagnosed her with Cerebral Amyloid Angiopathy which was causing seizures, bleeding and inflammation in the brain. We have 2 choices insert a gastric feeding tube and give high doses of steroids to reduce the inflammation of the brain. And hope that she comes back to her baseline....... being able to talk but struggling with words and memory, moments of suspicion and paranoia mixed with crying for what reason? she has no idea and becoming very frustrated and angry with herself because she hated the the way she was and the problems she was having. Don't get me wrong, I have no problem answering the same question 5 times in 10 min. or preparing her meals and helping her get dressed but my mother has told me she does not like being the way she is, having to depend on someone helping her and being anxious about not being able to remember anything. She has been unable to enjoy life for quite some time. Our second choice is palliative/hospice care with no permanent feeding tube or aggressive drug therapy.

As much as we want to do everything we can for our loved ones, we have to make these decision for them, not for us. Would they want to be put through all this extensive treatment, prolonging the agony and for what kind of quality of life in the end? It's a very tough decision because we tend to think if we don't try every last effort, we have given up on them but we have to realize that its not giving up on them. Sometimes WE have to give up the fight and let them go with dignity and in peace.
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Mhillwt Aug 2019
thank you for your thoughtfulness......in regards to your mom, im so sorry......I did read that for ALzheimers patients feeding tubes do not extend life.....If you choose palliative, I would imagine you would be forced to do a feeding tube VS hospice wouldn't? Also, if you do inpatient hospice, be on top of the dosing, etc......let them know you want mom comfortable but also alert - I didn't know I could even ask this and my dad was quickly sedated with all the hospice meds and never woke up again - I was blindsided....keep us posted on mom!
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I am sorry for your loss. I know it is all so confusing! This is how it works, Drs have to give you all the facts and all the Tx plans. They can not influence you one-way or another. They have to let you make the the decision. Now, that you made your decision and they are no longer that persons Dr because...well for what ever the reason is then they can give you their 2 cents.

Your dad was very ill. He had very complex illnesses going on all at the same time. Plus, he was up there in age. His body just couldn't take all the diseases and stress that was going on. You made the right choice. A feeding tube at that age with that prognosis would have prolonged his pain, but having MRSA at the age of 90...I am not sure if antibiotics would have kept working, nor would his body be able to fight off the infection.

Look, I have seen people live for yrs with feeding tubes and they end up being bedridden and in pain. And once they are in, it is very hard to have it removed.

To the answer of your question, no they are not worth it. You loved your dad and You made it possible to let him go in peace and hospice helped you do that.

You did the right thing!

Hugs!!
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Mhillwt Aug 2019
thank you...….I appreciate your thoughtful response!
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My mom specifically told me that she doesn’t want a feeding tube if given a choice. I’m glad she feels that way. If nothing can be done why put them through the misery at the very end of their life. It’s almost cruel to do that, forcing them to be kept alive.
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Mhillwt Aug 2019
thank you for your thoughts....appreciate it !
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I'm no feeding tubes in someone that age. If it's a short term thing, sure. But for someone that age it's probably not going to be. It'll be there for the rest of their life. Which won't be very long. Why prolong the suffering? For the same reason I'm anti-intubation at that age. That tube will never come out. I have a general no tubes policy for someone at that age. It doesn't do much to extend life. It does a lot to destroy quality of life for what time they have left.
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NO! Definitely not. It would only prolong your Dad's suffering.
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