My father was diagnosed with throat cancer a year ago. He is 89, agreed to try radiation and chemo, They placed a gastric feeding tube before the radiation, knowing he would encounter problems eating etc from the treatment. He started treatment in January and by Feb he was using the tube 80% of the time, radiation had killed off his taste buds and salivary gland function, only able to swallow juice and maybe milkshakes. By summer, he was pretty much only on the tube feeding. In July, he was told the treatment had failed and there was no more to do. He was having a lot of pain by then, so hospice was called in. Initially, we thought this was "too much too soon" but started the process. One of the consent forms, besides DNR choices, has an option for feeding tubes. Since his was already in, he checked that he wants it. He did deteriorate quickly and within a month, he became mostly bedridden. We (me and hospice) have continued his feeding by tube. All his medications are administered by tube. He has become more and more disoriented, still has significant pain even with hospice meds. He hasn't eaten anything in over 6 months. If he did not have this tube, he would have passed already. At the risk of sounding heartless, I just cant see still tube feeding him when he is basically 'gone" but just keeping his body alive for years. As it is, he's already down to 115lbs. He is fading away, even with the feedings. I just feel like this is prolonging his suffering but not feeding him is not an option. He does not have enough of his wits about him to change the directive. I want some peace for him .. feel like I'm on a tightrope. I am caring for him alone, just me and my 13 year old grandson.
I guess I erally didn't have a question, just need to vent in a safe place! Thank you!
Thank you so much for your response! So many good directions!
Yes, we have a social worker, I just wasn't sure what I needed her for. She did get us help for discounted utility service and a handicap placard for the car (tho I don't really take dad out anywhere!)
His pain is hard to gauge. He will tell me when his head aches, when his nurse is here and asks him how he feels or how his pain is, he says "Oh, fine. I feel pretty good." That's his standard response when he can't hear or doesn't understand what's being said. She tries to engage him but he's not aware of his treatment etc. I do the talking for him. He was not asked if he preferred consciousness over pain control. He assumed, about a month into this, that it was a guided death procedure! He thought it was taking too long.
I appreciate your suggested questions. For whatever reason, I am having trouble putting things into the right words. I am very tired..mentally, not physically.
I will try contacting the social worker, as well as present my questions to his nurse.
Take care and thanks again.
I am so sorry that you are going through all of this-it is an impossibly difficult situation.
Years ago I was a Hospice nurse (I am a Nurse Anesthetist now), and the issue of feeding tubes is always difficult.
Are you his healthcare power of attorney? If not, even if he is weak and deteriorating, he can make you his POA now. That allows you to make decisions legally.
But more importantly, are you able to talk with him? Can you ask him if he wants to continue the tube feedings? If not, if he is not able to articulate his wishes, you as next of kin will likely be the person that the Hospice team relies on for direction. Hopefully, there is not other family around that disagrees.
Does the Hospice service you have send a social worker to visit? That may be an option, there should be support for the family (Hospice considers the whole family as the patient not just the individual). There should be someone there that can come out and assess the situation and help you with this issue.
I am concerned that you say he is still in significant pain even with the medication. This should not be the case. There is no upper limit for medication at this stage of the game. And there is no reason to have someone in pain. I am assuming that your dad did not say that he would rather be in pain than to have medications that may have him sleeping most of the time? That is usually something that Hospice intake people ask in the beginning, if consciousness is the priority or if pain relief is the priority. This is not always the choice, sometimes people at the end of life are able to have their pain controlled and still remain mostly awake. But it is not uncommon that as the pain increases, the meds need to increase and the person is mostly sleeping.
I would prioritize a list of concerns and request a visit from the Hospice people.
Some suggestions of questions:
-Are tube feedings ever withdrawn to avoid prolonging suffering? (many times we had family request tube feedings stop, and we usually just continued to provide water through the tube. At the end of life people rarely complain of hunger, it is thirst that is uncomfortable)
-My father isn't able to direct his care, am I the one to make decisions now?
-My father is in pain, how can we get him comfortable?
Make it clear to them what your #1 priority is, I assume it is that your dad is comfortable. You will need to advocate for that goal.
You are generous to be there for your dad at this stage of life. Please write if you have more concerns or need support. There is no one "right" way to do all of this, you are doing your best!
Margaret