Feeding tube pros and cons

[Mary Beth Skylis]

Hi Eva-h-Wharton,

Thanks for this topic. What an intimidating discussion. My dad hasn’t quite reached this point, but he does sometimes struggle to keep weight on. What does your husband think about the idea?

[neurodoc]

The difficulty of the disease is in swallowing liquids,as there is a risk of aspiration pneumonia.The solid foods not so much but there is a chance that it might happen.U can try putting his food in a blender and feed his slowly.Usually these situations happen when the pt loses his mobility and is bedriden.If he walks it is more difficult to choke.

[Sherman Paskett]

My heart aches for you. This is not a simple subject and hinges largely on what you and your husband believe about life in general. My wife and I had this discussion long ago and we both agree that we do not want feeding tubes. A feeding tube will prolong life, and if that is most important to you and your husband, then by all means do it. But a prolonged life is not necessarily a good life, so make sure you are both in agreement because the decision will affect both of you.

This is one of the horrors of PD: one way or another, no matter how hard you fight it, PD always wins. If you are a person of faith, meet with your spiritual advisor. If not, talk it over with a like-minded friend. Consider why, or why not, you want to take this next step and whether it is in your or your husband’s best interest.

[Sallie]

My father had a feeding tube for about 3 years before he passed away at age 85. As a family, we decided it was the best choice for everyone. My father wasn’t at a point where he wanted to give up even though it was difficult for him to move, He still was interacting and enjoying life. The last year of his life was difficult because the feeding tube was keeping him going while he was bed ridden and basically fully incapacitated with pain. This is where it became difficult on everyone because the tube is life support. Having shared all that, I still feel the decision made to get the feeding tube was the right one at the time.

I agree with everything the previous person said and I think she provides good advice of how to go through the decision making process.

If you have any questions about feeding tubes, please feel free to ask me.

Sending you strength and prayers as you navigate this stage of your husbands PD.

[Sheila_Smith]

My husband had a PEG-J tube inserted via stoma surgery about 6 months ago, not for feeding, but for gastric delivery of his primary Parkinson’s medication (a gel form of carbodopa-levodopa called Duopa). We opted for this procedure because his oral meds were losing efficacy, and he was experiencing frequent and severe “off” periods, especially after consuming any amount of animal-based protein. He is still very mobile (when his meds are on), but has had some swallowing issues with solid foods as well as liquids. As others have mentioned, he also struggles with trying to keep weight on, even though the amount of food/calories he consumes is not any less than what he consumed pre-diagnosis in 2013.

As for pros/cons of the tube, I can say that we felt the radiologist who performed his surgery downplayed the invasiveness of the procedure, as well as the recovery process — at least in terms of the complications my husband suffered. It wasn’t anything that turned out to be life-threatening, but he did experience a LOT of pain the first week, and he still has fairly frequent episodes of pain at the insertion point, even after the nurse practitioner loosened his “bumper” (part of the assembly that keeps the tube in place). His tubes (he has 2 — gastro and jejunal) must be flushed twice, 2x daily, and I help him clean the stoma area with sterile gauze strips and Qtips doused with soap and water. He has quite a bit of swelling and mucus leakage at the site, which concerns me after such a lengthy healing period. I can’t speak for how the tube functions for feeding, but he still wrestles with a comfortable way to keep the apparatus secure, since his is connected to a fanny-pack-sized pump (about the size/weight of 4 cell phones).

We are currently debating whether to maintain the current setup. He’s scheduled to have the tube replaced in a few weeks (a procedure that we were told would be necessary every 6 months), and we are considering asking them to just remove it altogether, because the cons in his case seem to outweigh the pros. When the med works, it works great — sometimes too well, because he gets significant dyskinesia for extended periods of time. We both struggle with what is still an hour-to-hour roller coaster of “overly on vs. significant off” times. And I haven’t mentioned some of the other cons related to the stoma and tube, among which are (not a complete list): People with stoma tubes are discouraged from swimming or taking a tub bath because of possible infection from contaminated water getting in through the stoma; they have to be careful about young children or pets tugging or twisting the tube; my husband is constantly experimenting with various ways to keep the tube in place (along with his pump), and has never settled on anything that feels comfortable or unobstrusive; the tube pokes out under his shirt when connected to his pump, and hangs awkwardly and/or painfully when not connected…he usually has to anchor it to a necklace-type lanyard or tuck it into an elastic belt when he gets ready to go to bed. It’s not easy to sleep on his side with it in place, so he sleeps on his back now, which results in loud, constant snoring…so I’m now sleeping on my living room recliner.

My husband’s situation is different from that of a PWP who will use the tube only for feeding; but some of the cons related to the tube itself might be the same. Of course, like PD itself, every person has her/his own unique experiences with such procedures. We have met and spoken with several other Duopa pump users who love it and are very happy with their results, compared with traditional oral medication therapy.

I would encourage you to read whatever literature your husband’s doctor has referred you to, plus some of the more credible medical web sites, such Mayo Clinic, Cleveland Clinic, etc. Here is one very brief laymen’s explanation with pictures that demonstrate the 3 different types of tube insertions: https://medlineplus.gov/ency/imagepages/19965.htm

medlineplus.gov

Tube feeding: MedlinePlus Medical Encyclopedia Image

Tube feeding is a way to provide nutrition when you cannot eat or drink safely by mouth. This can happen if you are unconscious or have trouble swallowing. Besides nutrition, tube feeding can provide fluids