What if he refuses a PEG?

[KitMike21]

Mike has refused a PEG or. TRACHEOTOMY. What will that do to his timeline? He was diagnosed in March, he has lost 55 lbs, he is wheelchair bound, and has little mobility left.

 

[lgelb]

Where does he stand on BiPAP? For most people, that is as far as they get in terms of respiratory support.

Re the PEG, if he's lost 55 lb, depending on where he started, that may be more of a limiting factor. Are you doing high-cal shakes, soups and the like? There are many tips in other threads.

Best,
Laurie

 

[affected]

Hi Kit,

it's really hard isn't it watching these decisions?

My Chris did accept a peg, but he was in starvation mode and very dehydrated and we never got him to stop losing weight even with the peg. Mostly this was because he would refuse some feeds nearly every day, and when he did take them he would feel over-full and nauseous. He wouldn't really get into trying to turn things around.

For me, at least with the peg I could give him medications and he stopped being dehydrated, and as he approached the end it was great to be able to easily give palliative meds.

He also refused bipap, so I watched his breathing decline.

He also refused most pain meds even though he had terrible pain for about 9 months.

What is his swallowing ability like with puree or thickened fluids?
Where is his breathing at?

It's always hard to say what will happen, but I can tell you that I have known of PALS who have refused peg and any breathing assistance who have had a good peaceful passing.

The peg does not always make their life longer.

To me it's about quality of life. I felt that with good hydration and nutrition his quality would at least be better. But with the paranoia of FTD he felt that saying no gave him some control.

I'm not sure if that really answers your question or not. Keep talking to us.

 

[Nikki J]

I am so sorry. I looked at your other thread and see you said he is six feet and started at 165. If he is now 110 as you know he is very very underweight so that is indeed likely to be his limiting factor.

Have you considered hospice? It sounds as if he wants comfort measures. Hospice is not just for the final days

 

[KitMike21]

Where does he stand on BiPAP? For most people, that is as far as they get in terms of respiratory support.

Re the PEG, if he's lost 55 lb, depending on where he started, that may be more of a limiting factor. Are you doing high-cal shakes, soups and the like? There are many tips in other threads.

Best,
Laurie

We are trying high cal shakes along with meals when he wants them. He has a BiPAP machine but rarely uses it.

 

[KitMike21]

I am so sorry. I looked at your other thread and see you said he is six feet and started at 165. If he is now 110 as you know he is very very underweight so that is indeed likely to be his limiting factor.

Have you considered hospice? It sounds as if he wants comfort measures. Hospice is not just for the final days

We do have hospice. He's not one for taking pain Meds much. He's just wasting away. In the last few days his voice has become a whisper. He can't do anything without assistance. We hired a caregiver to come in 40 hours during the week so I can go to work...

 

[KitMike21]

Hi Kit,

it's really hard isn't it watching these decisions?

My Chris did accept a peg, but he was in starvation mode and very dehydrated and we never got him to stop losing weight even with the peg. Mostly this was because he would refuse some feeds nearly every day, and when he did take them he would feel over-full and nauseous. He wouldn't really get into trying to turn things around.

For me, at least with the peg I could give him medications and he stopped being dehydrated, and as he approached the end it was great to be able to easily give palliative meds.

He also refused bipap, so I watched his breathing decline.

He also refused most pain meds even though he had terrible pain for about 9 months.

What is his swallowing ability like with puree or thickened fluids?
Where is his breathing at?

It's always hard to say what will happen, but I can tell you that I have known of PALS who have refused peg and any breathing assistance who have had a good peaceful passing.

The peg does not always make their life longer.

To me it's about quality of life. I felt that with good hydration and nutrition his quality would at least be better. But with the paranoia of FTD he felt that saying no gave him some control.

I'm not sure if that really answers your question or not. Keep talking to us.

His breathing is weak. He doesn't use the BiPAP very much though. His swallowing is difficult and he usually has a coughing spell after drinking anything or when taking pills. He rarely asks for pain Meds. He can swallow thicker fluids, but it takes time and he will cough for a good while before it calms down. His ALS is limbar onset, so all the breathing, eating , swallowing issues have been the last to develop. But he's so weak and virtually paralytic in both legs and one arm, that he never seems to have an upswing... Only marked decline weekly.

 

[affected]

It's really hard to watch, especially when you feel some symptoms could be managed better. But I learned to accept it was his body and disease, no matter how hard that was.

Does he have much pain, and just won't take meds, or he doesn't have much pain?

My Chris had a lot of pain but wouldn't take much meds, he seemed to feel he should just 'put up with it'. hugs xx

 

[affected]

Oh, do you know why he won't use the bipap much?

Sometimes it is because the settings are not right.

 

[gerrie]

I'm so sorry to hear this. My mom has also lost alot of weight even though she has feeding tube she is down to 79 pounds it's very hard to watch this disease destroy the ones we love.prayers for you and your family

 

[JimInVA]

My PALS went over a year, after first undeniable symptoms, chasing a misdiagnosis. When she finally sought another opinion, she was having problems breathing at night and during the day if she laid back in her PWC. And she was losing a huge amount of weight... even though her appetite remained unchanged. On that first appointment with the neurologist at Johns Hopkins, he asked about both her breathing and her weight. He explained that her body was working overtime, especially at night when laying flat, to get in enough air to flush her lungs... not so much to get oxygen as to remove carbon dioxide that was building up. He said that it was like running a marathon each night. He immediately prescribed a BiPAP. Once she began to use it, she began to sleep much better. Her weight also leveled out. She didn't gain back all that she'd lost... but she was no longer losing weight.

Darcey also did not want a PEG. I wanted to be able to provide any medicines that she might need but could not swallow and asked that she reconsider the PEG. She said she'd think about it and that we'd revisit this decision when her breathing decline reached the point in time where such decision was "now or never". She was still swallowing well but elected to agree to the PEG. With that agreement was an understanding between us that she was doing to allow me the comfort of knowing I could provide medicines that might be necessary when she could no longer swallow. But she also wanted me to understand that it was not (and continues not to be) her intent to actually use it for the purpose of providing nourishment. To this point, her PEG has only been an unwelcome item of interference. I keep it clean... try to keep it from becoming raw and irritating where the tube exits her stomach... have to regularly flush it... and have to remember to locate it each time I lift her in the sling or pull down on the front of her shirt or sweater (so as to not pull the PEG out). We are both aware that we'll only know if the PEG was worth doing after she's gone. For the moment, however, we just raise our eyebrows. And regarding a trach... Darcey is personally dead set against it.

As a caretaker, it is difficult to watch a loved one's decline due to ALS. But while ALS can take away some decisions from the person afflicted, there are other decisions that the can continue to make for themselves. And for Darcey, there is a certain sense of power, control and delight in the ability to make those choices. Fortunately, for me, we're able to fully talk about these things... and how it feels on both sides of our "ALS Together" journey. It is difficult... but being able to openly share creates an opportunity for understanding that makes it much easier for me to support her choices and to provide the care that she wants and needs.

The ALS journey is different for each of us. I hope the two of you are able to find the path that best honors and respects each of your hearts...

Jim

 

[Diane H]

Mike has refused a PEG or. TRACHEOTOMY. What will that do to his timeline? He was diagnosed in March, he has lost 55 lbs, he is wheelchair bound, and has little mobility left.

It doesn't seem that anyone has answered the basic question you asked. If you aren't sure you want to know, stop reading because I am going to give you the most honest answer I can.

Without a feeding tube he will continue to lose weight of course, but the immediate problem is that he will aspirate when trying to swallow. You said in a later post that he coughs when trying to eat or drink. The cough indicates that he is already aspirating some of the food or liquids. If his cough is stong enough, the aspiration may be minimal. A prolonged coughing spell indicates his cough is weak. Continuing to try to eat will inevitably lead to aspiration pneumonia and a respiratory crisis. Depending on the severity of the pneumonia and how strong his breathing is, he may survive the first bout of pneumonia if he agrees to be hospitalized in order to get IV antibiotics and IV fluids for hydration. His poor nutritional state will make it harder for his body to fight the infection however. With the BiPAP he may not need to be put on a ventilator to survive. He can choose not to treat the pneumonia at any time and be given whatever medications help keep him comfortable until his breathing is too bad to support life.

If he recovers and still refuses a feeding tube but continues to try to eat and drink, he will develop pneumonia again fairly quickly. Accepting the feeding tube will help prevent the pneumonia. Even so, his breathing will continue to decline and the BiPAP will need to be used more and more. He can then be medicated to reduce the feeling of air hunger, and if he chooses, be heavily sedated, have the BiPAP taken off and die comfortably.

The timeline for all of this is variable and although this is the most common scenario, it is not the only possible path. His progression since March has apparently been very rapid so another year without a feeding tube is highly unlikely, but as with any prognosis from someone who isn't there, doesn't know all the details of his progression and general health, it is no more than a big guess. But I can say that medical statistics show that without any food a person will live about a month, less if they are malnorished to start with. Without water we can only survive about a week.

OK, that is what I know about refusing a feeding tube with ALS. I don't feel good about posting such hard truths, and maybe I shouldn't, but some people want the bare facts. Others prefer to take it as it comes. Neither way is best or worst, right or wrong.

 

[skipper66]

My dad had limb onset. He lived for 3 years from his official diagnosis with it. He used a bi-pap in the first few months of his diagnosis and then never used it again. He functioned well without it. He could talk, eat, and swallow until about 24-48 hours before his death and then all the sudden he lost his voice, had trouble breathing, and couldn't swallow. We had Hospice for less then 24 hours. He went that quick. 5 days prior he was at his granddaughter's volleyball game. Hospice used liquid Morphine and Ativan for him during the last few hours.
I don't want to alarm you. But, please get everything in order. Even though we knew dad's time was coming. It happened so rapidly at the very end that we couldn't even catch our breath. We were not prepared. Is anybody for the inevitable. I would see if your loved one wants anything in particular done now. Does he want to see someone special? Does he want to have a visit from a pastor? See what he wants to make him comfortable. Hugs, Kim

 

[KitMike21]

It doesn't seem that anyone has answered the basic question you asked. If you aren't sure you want to know, stop reading because I am going to give you the most honest answer I can.

Without a feeding tube he will continue to lose weight of course, but the immediate problem is that he will aspirate when trying to swallow. You said in a later post that he coughs when trying to eat or drink. The cough indicates that he is already aspirating some of the food or liquids. If his cough is stong enough, the aspiration may be minimal. A prolonged coughing spell indicates his cough is weak. Continuing to try to eat will inevitably lead to aspiration pneumonia and a respiratory crisis. Depending on the severity of the pneumonia and how strong his breathing is, he may survive the first bout of pneumonia if he agrees to be hospitalized in order to get IV antibiotics and IV fluids for hydration. His poor nutritional state will make it harder for his body to fight the infection however. With the BiPAP he may not need to be put on a ventilator to survive. He can choose not to treat the pneumonia at any time and be given whatever medications help keep him comfortable until his breathing is too bad to support life.

If he recovers and still refuses a feeding tube but continues to try to eat and drink, he will develop pneumonia again fairly quickly. Accepting the feeding tube will help prevent the pneumonia. Even so, his breathing will continue to decline and the BiPAP will need to be used more and more. He can then be medicated to reduce the feeling of air hunger, and if he chooses, be heavily sedated, have the BiPAP taken off and die comfortably.

The timeline for all of this is variable and although this is the most common scenario, it is not the only possible path. His progression since March has apparently been very rapid so another year without a feeding tube is highly unlikely, but as with any prognosis from someone who isn't there, doesn't know all the details of his progression and general health, it is no more than a big guess. But I can say that medical statistics show that without any food a person will live about a month, less if they are malnorished to start with. Without water we can only survive about a week.

OK, that is what I know about refusing a feeding tube with ALS. I don't feel good about posting such hard truths, and maybe I shouldn't, but some people want the bare facts. Others prefer to take it as it comes. Neither way is best or worst, right or wrong.

You answered my question very succinctly and I appreciate it! His coughing spells are prolonged and weak in effectiveness. I don't know if I mentioned that he has an illiostomy- but that provides an additional hurdle and makes him super susceptible to dehydrate. In all the things you read, many times the exact answer your looking for can't be found or no one wants to tell you. Thank you so much for your honest and thorough response. I'm pretty sure he's not going to fight much to survive. This is not away to live in his mind- and I understand that. There is no easy path through this disease...

 

[KitMike21]

You answered my question very succinctly and I appreciate it! His coughing spells are prolonged and weak in effectiveness. I don't know if I mentioned that he has an illiostomy- but that provides an additional hurdle and makes him super susceptible to dehydrate. In all the things you read, many times the exact answer your looking for can't be found or no one wants to tell you. Thank you so much for your honest and thorough response. I'm pretty sure he's not going to fight much to survive. This is not away to live in his mind- and I understand that. There is no easy path through this disease...

What are the signs of pneumonia? What should I look for? He has already said if hospitalized, he does not want IV fluids...