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!
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!!
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.
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.
I'm so sorry for your loss.
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.
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.
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.
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.
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!!