Choosing not to get feeeding tube?

[samsmom]

My dad is 86 and was diagnosed with bulbar onset ALS earlier this month though he's had symptoms for about 18 months. He has lost a lot of weight and increasingly has trouble eating. We've discussed a feeding tube and he's unsure.
I'm concerned about him having the insertion surgery given his age, weakness and lack of energy. I'd hate to encourage him to have something that would cause more issues. I know it is his choice and will respect his decision no matter what.

Wondering if anyone else had a loved one who declined the feeding tube and what your experience was.

Thanks.

 

[TGB1]

Hi Jennifer,
I know we have probably discussed this before, so please bear with me if I am repeating something. The feeding tube has been an absolute god-send for my mom and my family! She was diagnosed in 12/12 and got the peg 1/13. Her symptoms - slurred speech began at least 3 years prior and swallowing difficulties began at least one year prior. Before diagnosis she would call me in an absolute panic because she couldn't eat, food just wasn't going down. She was losing weight, and the stress of getting those panicked phone calls had me and my brother just about at our wits end - we had no idea what to do! When she got diagnosed at the Cleveland Clinic the neurologist said she needed a peg asap if she wanted to continue living and not gradually starve. My mom spent one night in the hosp. after peg insertion and we have not had any major feeding problems since. Granted we did have to figure out how much water to flush thru so as not to get her sodium levels too low. Another factor is that she cannot do the feedings herself, me and my brother and his family do 3 per day. Meds go thru tube also. It is working for us because there are several of us to attend to her, and there are no more panicked phone calls. Just wanted to share my experience with my mom and the peg. I have no doubt that she would have slowly starved over this past 6 months w/o the peg.

 

[BrianD]

What specifically was/is it like to die without getting the feeding tube has been asked a few times over the years I've been around on the forum, but I've never seen it answered really.

So in that case he will be going down a path of dying by starvation/dehydration or respiratory distress, as you may not know which will deteriorate faster. In both cases he can get comfort meds. I think you can get a much better answer by calling and talking to a Hospice nurse.

 

[Katie C]

The reason you've never seen it answered specifically is because it's different for each case. In our case, Glen chose no tube. As it turned out, it wouldn't have made any difference because his FTD caused him to make poor decisions. He could only swallow pureed foods, but one morning when nobody was watching he found an apple (we thought we'd cleared everything out.. we'll never know where he found it.) He aspirated some of that apple and died within a few days of aspiration pneumonia. My father in law, not a PALS but someone with double kidney failure who chose to go off dialysis and at some point could not take in food or liquids, died quite peacefully. My mother, who had lung cancer and emphysema, could not eat or drink but with the aid of hospice and medications including morphine that kept her calm, also died peacefully.

 

[Txgirl]

As many people here know by now, I can be rather blunt. So here I go again... I have a choice of dying two different ways with this disease. Starvation or suffocation. It's my choice but I have not made up my mind yet which way is best.

 

[Nighthawk]

@Katie C:

Occasionally you hear families say about a deceased relative: "He died peacefully in his sleep. We can only hope to be as lucky as he was when our time comes."

"Lucky?"... How can they be so sure? If the evidence for a peaceful passing was simply the man's relaxed corpse, then maybe they should have withheld their judgement. Who really knows what his mental state was like when he died?

That's something we may never know for certain as we weren't inside that person's mind and body at the time of death to categorically affirm that.


Carlos

 

[lgelb]

Samsmom, make sure your dad gets a consult with an interventional radiologist experienced in non-sedated gastrostomies on BiPAP. Then he can make an informed choice. It's not actually "surgery" -- no sutures and a very small hole for the tube. But certainly his choice, a change in lifestyle (as is dying of malnutrition, yes). It sucks that there are no "good" choices.

In my health care experiences, Carlos, peaceful is as peaceful does. You can definitely tell the difference, and it doesn't take psychic powers. It's not just the moment of death, but what leads up to it. It is no small thing, but one of the best things we do, at whatever point we enter the process, to help someone to as peaceful a passing as possible, no matter where the setting or what the circumstances. As a caregiver, it is one of my major objectives. So when Katie says "peaceful," I believe she is correct, categorically. And in your constant love and care for Glen, Katie, you put him on that path.

--Laurie

 

[samsmom]

Thank you all. We initiated hospice this morning as my dad is declining rapidly. It has become impossible to discuss the feeding tube with him as he doses off throughout the day. He has finally agreed (though is still angry) to have an aide with him at night and to help him sleep with the bipap along with a script for Ativan to help him relax with the bipap. I am praying that I get one more chance to discuss the feeding tube wih him tomorrow as it might be easier after a night's sleep. the last t ime he was truly able to discuss it he was not interested but he is barely eating now. I am at a loss for what to do. There is no good choice which seems to be a theme with ALS.

 

[Nikki J]

I am glad you have hospice. I am so sorry that he is declining quickly.

Comfort and strength
Nikki

 

[TGB1]

Sounds like the hospice visit at least is providing something to help relax your dad. My mom has a scrip for Ativan, but has only let me give it to her once recently because she became very anxious about swallowing/mouth not closing. She is afraid to take it, and at our pcp visit this week I asked the dr. to please explain how it is the lowest dosage and it cannot harm her, just relax her. I keep trying to explain to her that there is no special reward for her in heaven for suffering when she could take something to alleviate the anxiety. She finally took one Wed. nite and she actually became relaxed! Imagine that! She also takes 10 mg amitryptiline nightly. I hope your dad is able to get some restful sleep tonite, and that maybe after a few good nites of sleep he will want to talk about the peg. I'm thinking about you and your dad.

 

[10steps]

My husband declined a feeding tube. It was his choice. He was not bulbar onset. From the first day of symptoms til the day he died was almost exactly 2 years. It came down to starving or suffocating - as someone else stated. He briefly considered the peg for me, if only to get his marinol pill down. Because he was highly claustrophobic, the doctor felt the chance that he would need to be vented was high, something he did not want but a call I would have to make if he was on the table. He was glad he didn't get the peg. Looking back I'm glad he didn't as well, ALS took everything from him except his ability to make decisions.
Ultimately he suffocated...there was no pain, I administered the intitial doses of morphine but then the hospice nurse had the morphine on a pump. He was comfortable. He was 45...it took 4 days.

 

[Txgirl]

My husband declined a feeding tube. It was his choice. He was not bulbar onset. From the first day of symptoms til the day he died was almost exactly 2 years. It came down to starving or suffocating - as someone else stated. He briefly considered the peg for me, if only to get his marinol pill down. Because he was highly claustrophobic, the doctor felt the chance that he would need to be vented was high, something he did not want but a call I would have to make if he was on the table. He was glad he didn't get the peg. Looking back I'm glad he didn't as well, ALS took everything from him except his ability to make decisions.
Ultimately he suffocated...there was no pain, I administered the intitial doses of morphine but then the hospice nurse had the morphine on a pump. He was comfortable. He was 45...it took 4 days.

10steps, I am so sorry. Out of all the posts i have read in this forum. Yours is the one that made me cry.

 

[bemindful]

As many people here know by now, I can be rather blunt. So here I go again... I have a choice of dying two different ways with this disease. Starvation or suffocation. It's my choice but I have not made up my mind yet which way is best.

Thank you Txgirl. My mom has to make that choice and I will support her decision. I appreciate you sharing your thoughts. You are strong.

 

[Txgirl]

Thank you Txgirl. My mom has to make that choice and I will support her decision. I appreciate you sharing your thoughts. You are strong.

I am so sorry that any of us PALS have to make this decision. I know it is painful with your mom having ALS and knowing what lies ahead. I pray that it goes easy for her and I pray for strength for you.

 

[bemindful]

I am so sorry that any of us PALS have to make this decision. I know it is painful with your mom having ALS and knowing what lies ahead. I pray that it goes easy for her and I pray for strength for you.

Thank you very very much. I pray for your strength as well.