G tube for elderly Dad?
November 30, 2019 9:07 PM Subscribe
My dad is is 80 years old, has parkinsons, and has been doing great until he hit a quick and steep decline 2 weeks ago. The doctor is suggesting installing a feeding tube in his stomach, but I'm skeptical. Any thoughts or anecdotes would be appreciated.
My dad was doing generally OK until about 2 weeks ago. He's lost the ability to swallow so can't take his oral-only parkinson's meds. They finally got an NG tube into him today after a lot of tries, and the doc said that they won't be trying that again due to the risk of perforating his esophagus. He is visibly in pain, but they won't give him morphine because they're afraid of he might stop breathing, I guess. Sigh. He has moments of lucidity, but is mostly wincing with what looks like pain.
The docs are heavily suggesting that he have a feeding tube installed, and made it sound like a not big deal, reversible, procedure. That's not my conclusion from the research I've done. They say he'll die within days without the tube, but we're all going to die and I don't want him to suffer more than he already has. If there's a chance that he might have quality of life outside of the hospital after the tube is installed I'd be OK with it, but nobody will give me a straight answer about what the various potential outcomes.
So I guess I'm hoping to hear about some experiences with feeding tubes in elderly, very sick, patients. Yea or Neigh?
My dad was doing generally OK until about 2 weeks ago. He's lost the ability to swallow so can't take his oral-only parkinson's meds. They finally got an NG tube into him today after a lot of tries, and the doc said that they won't be trying that again due to the risk of perforating his esophagus. He is visibly in pain, but they won't give him morphine because they're afraid of he might stop breathing, I guess. Sigh. He has moments of lucidity, but is mostly wincing with what looks like pain.
The docs are heavily suggesting that he have a feeding tube installed, and made it sound like a not big deal, reversible, procedure. That's not my conclusion from the research I've done. They say he'll die within days without the tube, but we're all going to die and I don't want him to suffer more than he already has. If there's a chance that he might have quality of life outside of the hospital after the tube is installed I'd be OK with it, but nobody will give me a straight answer about what the various potential outcomes.
So I guess I'm hoping to hear about some experiences with feeding tubes in elderly, very sick, patients. Yea or Neigh?
I'm sorry to hear about your dad's pain and eating challenges. I don't have an answer, but if you'd like more info than you receive here, you might ask or search the archives over on https://www.reddit.com/r/Parkinsons/. It is not super active, but every so often someone will ask a question that gets a whole bunch of replies. I found this post with one or two comments on whether to use a feeding tube (not super useful). My heart goes out to you both.
posted by slidell at 9:52 PM on November 30, 2019
posted by slidell at 9:52 PM on November 30, 2019
Response by poster: A few points to clarify: my dad was cognitively fine before this decline. He is now decidedly not fine cognitively. He has a good medical team, and (queenofbithynia) I'm quite skilled at communicating with medical professionals. They are genuinely perplexed as to what is going on.
My dad's wishes were clear -- if he can have some quality of life after whatever awful thing he's up for it. But he's not up for languishing in the hospital.
I'll be quiet and listen to other answers now. Thanks to anyone who has or will reply. This sucks.
posted by plantbot at 10:23 PM on November 30, 2019 [1 favorite]
My dad's wishes were clear -- if he can have some quality of life after whatever awful thing he's up for it. But he's not up for languishing in the hospital.
I'll be quiet and listen to other answers now. Thanks to anyone who has or will reply. This sucks.
posted by plantbot at 10:23 PM on November 30, 2019 [1 favorite]
I am a GI doc and had a family member with a neurologic disorder live with a feeding tube for two years.
I am very sorry about what you and your dad are going through. I would first make sure that your Dad's pain and discomfort are adequately treated. Pain management is not impossible in an elderly patient with multiple diseases - it can be challenging but a geriatrician or a palliative medicine specialist can help with that. That honestly would be my first priority at the moment.
The first thing I would ask your Dad's medical team is whether they plan on doing further testing or interventions after the feeding tube is placed or whether they want to send him home. The feeding tube would allow them to give your Dad his Parkinson's medications, food and water but also give them more time to investigate and treat. A feeding tube is placed under endoscopic guidance so that would also give them a chance to inspect the esophagus for possible additional causes of swallowing difficulties, like an obstruction. So that's one thing I'd factor in. Removing the NG tube would allow the esophagus to heal - there are pressure sores from the tube after a few days.
I understand they are not completely sure what caused the decline but how much have they tried to investigate? I would look at any possibly reversible factors and have both a neurologist and internist involved, as well as a speech language pathologist to help with the swallowing issues. This especially as your Dad as you say was doing fine until now.
The above is not intended as medical advice but rather things to discuss with your Dad's doctors. Feel free to PM me.
posted by M. at 11:08 PM on November 30, 2019 [7 favorites]
I am very sorry about what you and your dad are going through. I would first make sure that your Dad's pain and discomfort are adequately treated. Pain management is not impossible in an elderly patient with multiple diseases - it can be challenging but a geriatrician or a palliative medicine specialist can help with that. That honestly would be my first priority at the moment.
The first thing I would ask your Dad's medical team is whether they plan on doing further testing or interventions after the feeding tube is placed or whether they want to send him home. The feeding tube would allow them to give your Dad his Parkinson's medications, food and water but also give them more time to investigate and treat. A feeding tube is placed under endoscopic guidance so that would also give them a chance to inspect the esophagus for possible additional causes of swallowing difficulties, like an obstruction. So that's one thing I'd factor in. Removing the NG tube would allow the esophagus to heal - there are pressure sores from the tube after a few days.
I understand they are not completely sure what caused the decline but how much have they tried to investigate? I would look at any possibly reversible factors and have both a neurologist and internist involved, as well as a speech language pathologist to help with the swallowing issues. This especially as your Dad as you say was doing fine until now.
The above is not intended as medical advice but rather things to discuss with your Dad's doctors. Feel free to PM me.
posted by M. at 11:08 PM on November 30, 2019 [7 favorites]
I'm a speech therapist with lots of experience with Parkinson's and swallowing. I agree with lots of the points already made.
It is really unusual to have a precipitous decline like you describe without a non Parkinson's cause. Often that is something as "simple" as an infection. It is usually (though not always, obviously) reversible.
In your position I would want to buy more time. I would explore the idea that he can't have Parkinson's meds. Most meds can be given in alternative form, especially if an NG is available. Even if not, there is usually a way to change the regimen to give a close equivalent medication, possibly more frequently. Another option is medication delivered through a skin patch. He should be getting some kind of Parkinson's meds even if it isn't his optimal regimen. It will take a while for his symptoms to ease but it should help.
In Parkinson's with no previous cognitive decline and a very sudden change in symptoms I would be inclined towards having the feeding tube if needed. But first explore the implications for his future care. If he recovered would he be able to care for the tube himself? (Eyesight, dexterity, memory, literacy) or is there someone at home who could do it? Otherwise who would deal with all that? Would it affect his ability to go home?
Feeding tubes are generally easy to reverse so that shouldn't be a concern. However, if he is likely to want one again as his Parkinson's progresses it is worth asking whether this could prevent another being placed as sometimes it can. Another option is to keep it in place but only put tiny amounts of water down it to keep it clean.
The best explanation i know of all the evidence around tube feeding is a set of UK guidelines called "Oral Feeding Difficulties and Dilemmas", available online. It is detailed and aimed at professionals but you might find some of it useful. It is 9 years old but as far as I know there is no significant change with new evidence.
Personally, I have seen people keep NG tubes in for a long time and I would want to see more investigations around what is going wrong with his swallowing to give a better idea of whether it might improve.
There is a good resource aimed at people with ALS trying to decide whether to have a feeding tube, which might be useful to you as many of the issues are similar: MyTube
Good luck - it is so hard to make a decision like this with imperfect information.
posted by kadia_a at 11:37 PM on November 30, 2019 [8 favorites]
It is really unusual to have a precipitous decline like you describe without a non Parkinson's cause. Often that is something as "simple" as an infection. It is usually (though not always, obviously) reversible.
In your position I would want to buy more time. I would explore the idea that he can't have Parkinson's meds. Most meds can be given in alternative form, especially if an NG is available. Even if not, there is usually a way to change the regimen to give a close equivalent medication, possibly more frequently. Another option is medication delivered through a skin patch. He should be getting some kind of Parkinson's meds even if it isn't his optimal regimen. It will take a while for his symptoms to ease but it should help.
In Parkinson's with no previous cognitive decline and a very sudden change in symptoms I would be inclined towards having the feeding tube if needed. But first explore the implications for his future care. If he recovered would he be able to care for the tube himself? (Eyesight, dexterity, memory, literacy) or is there someone at home who could do it? Otherwise who would deal with all that? Would it affect his ability to go home?
Feeding tubes are generally easy to reverse so that shouldn't be a concern. However, if he is likely to want one again as his Parkinson's progresses it is worth asking whether this could prevent another being placed as sometimes it can. Another option is to keep it in place but only put tiny amounts of water down it to keep it clean.
The best explanation i know of all the evidence around tube feeding is a set of UK guidelines called "Oral Feeding Difficulties and Dilemmas", available online. It is detailed and aimed at professionals but you might find some of it useful. It is 9 years old but as far as I know there is no significant change with new evidence.
Personally, I have seen people keep NG tubes in for a long time and I would want to see more investigations around what is going wrong with his swallowing to give a better idea of whether it might improve.
There is a good resource aimed at people with ALS trying to decide whether to have a feeding tube, which might be useful to you as many of the issues are similar: MyTube
Good luck - it is so hard to make a decision like this with imperfect information.
posted by kadia_a at 11:37 PM on November 30, 2019 [8 favorites]
My mother had an illness which is rarer than but related to Parkinson's. She had a bad spell late in the disease due to a UTI, including confusion and other cognitive issues. She got back to her baseline state of illness after the UTI was treated.
In your situation I would want to know what caused the decline before making this decision, if possible. While there are excellent, excellent physicians who treat the elderly, there are also some incredibly reckless, shitty ones, as I've learned to my cost. Do they fully understand that he had no cognitive issues prior to this? Make sure they understand that baseline for him did not include cognitive symptoms. It sounds wild that some of the doctors might not know this, but this very thing happened when my great aunt was ill - they were all set to send her home because they thought she must have had cognitive issues before she came in, when really she needed treatment for an immediate issue causing cognitive problems. We had to get other doctors involved.
posted by Frowner at 4:47 AM on December 1, 2019 [7 favorites]
In your situation I would want to know what caused the decline before making this decision, if possible. While there are excellent, excellent physicians who treat the elderly, there are also some incredibly reckless, shitty ones, as I've learned to my cost. Do they fully understand that he had no cognitive issues prior to this? Make sure they understand that baseline for him did not include cognitive symptoms. It sounds wild that some of the doctors might not know this, but this very thing happened when my great aunt was ill - they were all set to send her home because they thought she must have had cognitive issues before she came in, when really she needed treatment for an immediate issue causing cognitive problems. We had to get other doctors involved.
posted by Frowner at 4:47 AM on December 1, 2019 [7 favorites]
my mom had a feeding tube during her last few months (she had ALS). it had pros and cons - she was able to get the nutrition she needed, but also all her medications were administered through the tube. her actual death was caused by sepsis brought on by a perforated stomach. it was still necessary, and the right choice, but i'd definitely question his medical team about the effects of any meds administered through the tube.
posted by megan_magnolia at 6:31 AM on December 1, 2019
posted by megan_magnolia at 6:31 AM on December 1, 2019
I had a G-tube for about 4 (maybe 6, I can't remember) weeks after I had gastric bypass surgery. It was there so I could take my psych meds if I couldn't get them in orally. Turned out I never needed to use it. I was inserted during my surgery, so I can't tell you anything about that. It was removed in my surgeon's office. It was painful to have removed, but there was something funky about the way it was inserted. Ordinarily it is a simple thing.
I had to flush it a couple times a day. That was pretty easy. Fill syringe with water. Take cap off the tube. Clean tube. Insert syringe. Push water. Take the syringe out. Put the cap back on. The worst part was the cap that kept falling off in between flushings which I actually lost. I used a binder clip to keep the tube closed, so no big deal there.
It was pretty annoying at times to sleep with, because it would pull. Usually I could find another position. Then again, I had also had my GI tract drastically altered so that might have made a difference. There was some leakage of fluid from the site, and I ended up with yellow stains on my bedding.
I can answer any other questions, feel free to MeMail me.
I wish you and your dad the best.
posted by kathrynm at 10:36 AM on December 1, 2019 [1 favorite]
I had to flush it a couple times a day. That was pretty easy. Fill syringe with water. Take cap off the tube. Clean tube. Insert syringe. Push water. Take the syringe out. Put the cap back on. The worst part was the cap that kept falling off in between flushings which I actually lost. I used a binder clip to keep the tube closed, so no big deal there.
It was pretty annoying at times to sleep with, because it would pull. Usually I could find another position. Then again, I had also had my GI tract drastically altered so that might have made a difference. There was some leakage of fluid from the site, and I ended up with yellow stains on my bedding.
I can answer any other questions, feel free to MeMail me.
I wish you and your dad the best.
posted by kathrynm at 10:36 AM on December 1, 2019 [1 favorite]
I'm so sorry you're dealing with this - it stinks. Came in to say what Frowner did - has he been checked for a UTI? If that's part of the reason for the decline, treating it could help him resume the ability to eat -- and if not, it could at least restore enough cognitive function to have him help make the decision of what he wants.
My father is about one step behind yours in his Parkinson's development, but nowhere near lucid most of the time, so maybe I'm overinterpreting what you mean by lucidity. I know he'd want whatever happened to be his choice if that was possible (my father would). One thing that we've talked about when his care professionals talk about the inevitability of a feeding tube, is that even though it's removeable in theory, in practice it's really unlikely that they will remove it and resume feeding - especially if he's lost the ability to swallow. Which means there's a chance one day you'll reach a point where it becomes your responsibility to decide whether or when to remove that tube (and potentially cause death by starvation). We don't have a plan in place yet, and we're hoping we have time, but I think my mother is leaning against having them put in a tube for that reason.
posted by Mchelly at 12:57 PM on December 1, 2019 [2 favorites]
My father is about one step behind yours in his Parkinson's development, but nowhere near lucid most of the time, so maybe I'm overinterpreting what you mean by lucidity. I know he'd want whatever happened to be his choice if that was possible (my father would). One thing that we've talked about when his care professionals talk about the inevitability of a feeding tube, is that even though it's removeable in theory, in practice it's really unlikely that they will remove it and resume feeding - especially if he's lost the ability to swallow. Which means there's a chance one day you'll reach a point where it becomes your responsibility to decide whether or when to remove that tube (and potentially cause death by starvation). We don't have a plan in place yet, and we're hoping we have time, but I think my mother is leaning against having them put in a tube for that reason.
posted by Mchelly at 12:57 PM on December 1, 2019 [2 favorites]
It is really hard. You have my sympathy.
My mother loved her food. She also had Parkinson's and had some dementia as a result (along with some simultaneous clarity, so that it was hard to know what was going on with her), but when we got to the point where she had to be fed by hand but before we discussed feeding tubes, she refused the forkful of food I was trying to give her; her expression was emphatic and fierce and I said, "OK, mom. If you don't want me to feed you, I won't." It was pretty clear what she was planning, though by that point she couldn't talk much any more.
She stuck to it. Several days later the skilled nursing center called to tell me they wanted to take her to the hospital to treat her dehydration and I had them get in touch with my sister who had the health care power of attorney, and we were able to let her die in her own room with family present as she wished. For myself, the importance of following the wishes of the person with the illness is primary, even though for me personally it was fairly awful.
It's my opinion that when you are the caretaker for someone, there are no right answers. There is only care, and presence, and doing the best you can manage, and none of us gets out of it feeling that we did everything perfectly. But as the head nurse said to me afterwards, "You were there. Most of the people here have no one. Nobody ever even visits them."
posted by Peach at 4:10 PM on December 1, 2019 [5 favorites]
My mother loved her food. She also had Parkinson's and had some dementia as a result (along with some simultaneous clarity, so that it was hard to know what was going on with her), but when we got to the point where she had to be fed by hand but before we discussed feeding tubes, she refused the forkful of food I was trying to give her; her expression was emphatic and fierce and I said, "OK, mom. If you don't want me to feed you, I won't." It was pretty clear what she was planning, though by that point she couldn't talk much any more.
She stuck to it. Several days later the skilled nursing center called to tell me they wanted to take her to the hospital to treat her dehydration and I had them get in touch with my sister who had the health care power of attorney, and we were able to let her die in her own room with family present as she wished. For myself, the importance of following the wishes of the person with the illness is primary, even though for me personally it was fairly awful.
It's my opinion that when you are the caretaker for someone, there are no right answers. There is only care, and presence, and doing the best you can manage, and none of us gets out of it feeling that we did everything perfectly. But as the head nurse said to me afterwards, "You were there. Most of the people here have no one. Nobody ever even visits them."
posted by Peach at 4:10 PM on December 1, 2019 [5 favorites]
I specialize in Parkinson Disease and want to reiterate what The Elusive Architeuthis, M., and kadia_a have said, especially about ensuring there's not some other cause to explain his sudden decline -- PD is a slow disease (pun not intended) and if there's been a big change over the course of days to weeks, there is almost certainly an infection, stroke, or something else to blame. Knowing what that thing is will give you a lot of the info you need about what his expected recovery is.
A feeding tube won't cure his Parkinson's, but it will allow the PD to be treated which will in turn reduce his pain in the short term. It can absolutely be reversed later if needed, and reversal is usually easier than initial placement. I've seen both good and bad outcomes from G tube placement in elderly and frail individuals, including my own grandfather. Mostly depends on the reason/goals of the G tube.
I'm sorry you're going through this. Definitely ask for a palliative care consultation to help you think through the pros and cons before making a decision. (Contrary to popular belief, palliative care does not mean hospice, but they are trained geniuses at helping patients and families assess and articulate their goals of care.) Feel free to PM me as well.
posted by basalganglia at 4:19 PM on December 1, 2019 [6 favorites]
A feeding tube won't cure his Parkinson's, but it will allow the PD to be treated which will in turn reduce his pain in the short term. It can absolutely be reversed later if needed, and reversal is usually easier than initial placement. I've seen both good and bad outcomes from G tube placement in elderly and frail individuals, including my own grandfather. Mostly depends on the reason/goals of the G tube.
I'm sorry you're going through this. Definitely ask for a palliative care consultation to help you think through the pros and cons before making a decision. (Contrary to popular belief, palliative care does not mean hospice, but they are trained geniuses at helping patients and families assess and articulate their goals of care.) Feel free to PM me as well.
posted by basalganglia at 4:19 PM on December 1, 2019 [6 favorites]
I also came to suggest testing for a UTI. I only know non-elderly folks with gtubes, so I’ll keep it to myself. Wishing you and your Dad the best.
posted by quince at 10:21 PM on December 1, 2019 [1 favorite]
posted by quince at 10:21 PM on December 1, 2019 [1 favorite]
Response by poster: Thanks for all the replies. They have tested him for everything imaginable (all the way to lumbar puncture, ugh). Everything is negative, although clearly there is something going on. Right now he's got an NG tube and is in restraints, writhing in pain, and clueless about what is going on. My gut says this is the end. I've been with other family members when they died, and he has *that* look in his eyes. But if there's a chance that he might have a little fun after all this...
They treated him empirically with tons of antibiotics and an antiviral to no avail. We were hoping for improvement after he resumed his parkinsons meds, but no luck so far. I guess it is a fine line between extending life and extending death. Sigh.
posted by plantbot at 11:58 AM on December 2, 2019
They treated him empirically with tons of antibiotics and an antiviral to no avail. We were hoping for improvement after he resumed his parkinsons meds, but no luck so far. I guess it is a fine line between extending life and extending death. Sigh.
posted by plantbot at 11:58 AM on December 2, 2019
writhing in pain
This is NOT ACCEPTABLE. This would be my first priority right now.
posted by fiercecupcake at 12:45 PM on December 2, 2019 [2 favorites]
This is NOT ACCEPTABLE. This would be my first priority right now.
posted by fiercecupcake at 12:45 PM on December 2, 2019 [2 favorites]
Response by poster: >writhing in pain
This is NOT ACCEPTABLE. This would be my first priority right now.
I KNOW. They're giving him tylenol, afraid that anything stronger will kill him (not a bad way to go, IMO). If there are keywords I can use to get the medical team to address his discomfort please let me know. This is a good, university-affiliated research hospital, but I'm not impressed with the care he's been getting.
posted by plantbot at 3:29 PM on December 2, 2019
This is NOT ACCEPTABLE. This would be my first priority right now.
I KNOW. They're giving him tylenol, afraid that anything stronger will kill him (not a bad way to go, IMO). If there are keywords I can use to get the medical team to address his discomfort please let me know. This is a good, university-affiliated research hospital, but I'm not impressed with the care he's been getting.
posted by plantbot at 3:29 PM on December 2, 2019
So sorry you are dealing with this. I'm sure you are doing the best you can under these circumstances. I would ask the medical team what you need to ask to have his pain addressed, under what circumstances they would provide a solution for his pain. Surely there are a variety of options here. I would pursue asking for palliative care as soon as possible, maybe they could help you.
posted by RoadScholar at 4:13 PM on December 2, 2019
posted by RoadScholar at 4:13 PM on December 2, 2019
Without the Parkinson's medication (I'm assuming he's taking Sinemet), he might go into withdrawal and the symptoms, including pain, dysphoria, muscle rigidity can be very unpleasant. At this point it's really time to have a goals of care discussion with the admitting team and maybe get palliative care involved. I would try to do this before they lose the NG for whatever reason.
posted by reformedjerk at 8:58 PM on December 2, 2019 [1 favorite]
posted by reformedjerk at 8:58 PM on December 2, 2019 [1 favorite]
« Older Drivable mountain destinations in Nor Cal on... | How can I feel okay about throwing money at a... Newer »
This thread is closed to new comments.
I'm concerned that your father's team is not addressing his pain or talking to you about end of life issues in this frail, 80 year old man with an advanced illness. If your hospital has a palliative care consult team I would strongly urge you to ask for them to be involved--they are not just for people on hospice but are specifically trained to help you work through decisions with tradeoffs just like this, as well as to make recommendations for maintaining your father's comfort. If palliative care isn't available I would see if you can get a geriatrician involved.
posted by The Elusive Architeuthis at 9:44 PM on November 30, 2019 [26 favorites]