Post by norbert1 on Oct 16, 2006 10:06:49 GMT -5
I am posting this letter and my response because it illustrates the decision point that many face at the end of dementia. People with dementia who reach the end of the disease will usually die from Pneumonia, the inability to swallow properly, or refusal to take hydration and food.
My Latest Scare by nneal 07/29/06 10:34 PM
(edited slightly for clarity)
2 days ago, my husband ate a good breakfast. At noon, he ate a small amount and then it seemed he had a temp. The hospice nurse came in to check his bed sore and had me pick up antibiotic, morphine, tylenol suppositories and nausea meds. That night between changing under garments, sweaty clothing, trying to get meds down and in and giving carrot juice, etc no progress in his condition was made, (he still had a fever?). The next day the hospice nurse said he is "declining" and takes him off all food, and liquids. I said do you mean that he can't have anything to drink..she said no...he would choke to death. I said what about an i v to keep him hydrated? She says no, the drip would go to his lungs and he would not be able to assimilate the liquid...she then said he is declining. I asked her what she means and she gives me a book about dying...I ask her does this mean I need to call in the family and she says yes. Thinking that a hospice nurse has pretty much seen it all, I am crying my eyes out but decide that she knows best.
After about 2 hours after she left, I began to think that I would rather do anything than watch his mouth swell from lack of fluids and I called the medics and have him transported to the hospital where he is now...this is the 2nd night and he is being giving fluids by iv and eating and a bit more coherent. Now i am confused and don't know what to think - not sure what the next step will be..all his vital signs are perfect. He is being given and antibiotic and his fever is gone. Has anyone been told something like this by hospice?
My response ----
First, Let’s discuss the Hospice situation. Some information is missing. At the very least, you have a communication problem - the hospice nurse is not explaining things to you so that you can understand what is going on and why these decisions are being made. Or perhaps this occurred so suddenly, you were having trouble taking it all in? I will attempt to respond to specific things you have written.
{{{“by noon, he ate a small (meal?), then it seemed he had a temp.”}}}
Apparently he was only able to eat a small meal and had developed a temperature. This suggests that he is aspirating a portion of his food into his lungs and this is what caused the temperature.
{{{“etc no progress in his condition was made”}}}
The temperature was not going down?
{{{“the next day the hospice nurse said he is "declining" and takes him off all food, and liquids.”}}}
This is not the reason patients are taken off food. You should have been given a better explanation. The explanation is below.
{{{“he can't have anything to drink..she said no...he would choke to death.”}}}
Not well explained, but that is where you now are in this disease.
{{{“that i would rather do anything than watch his mouth swell from lack of fluids”}}}
When a person is no longer getting fluids, they need to have a program for keeping the mouth moist. The nurse should have explained this to you.
{{{“he is being given an antibiotic and his fever is gone.”}}}
Right now he is being hydrated with IV, and treated with antibiotic, but this is not a long term solution and hospice is not going to keep someone in subsistence condition using an IV.
When a person is on hospice care, it is understood that the person is dying - although in dementia this can be slow and not look like the dying process. When in hospice, a person is not sent to the hospital unless approved by the hospice. Usually this would be a situation where a procedure is needed to ensure the patients comfort. By sending your husband to the ER without consulting hospice, you discontinued the hospice program.
OK, lets talk basics. The first question is what is happening when he eats? Is he coughing or gagging? Has he stopped coughing or gagging when eating when he had been doing so before? What you have written suggests that at least a portion of what he is eating is going into the lungs and causing the fever. The food in the lungs provides food for bacteria and this causes pneumonia. When this happens, and a significant portion of food and drink is going into the lungs, the doctor will determine that the person can no longer be given food because it is causing aspiration.
It appears that your husband has reached the end of this disease process where lack of brain signals is impairing the swallowing mechanism, and feeding is causing aspiration and this is causing pneumonia. (You can read about swallowing in FAQ15) The aspiration is so great, that the antibiotics will not be effective against the continuous bacteria load in the lungs. Eventually, a major portion of food and liquids will go into the lungs. Often this can be determined - if there is no longer coughing when eating (to cough food out of the windpipe) or there is gurgling in the lungs after eating. When this happens, doctors will say, “no more food or water.”
IV’s will not prevent aspiration. Eventually, even natural saliva will be getting into the lungs and causing aspiration and pneumonia. This happens even when a person is fed directly into the stomach with a feeding tube, for instance.
When food and hydration stops, it is the lack of fluids that will cause the end of life. There is very little discomfort with this. The dehydration causes a more comfortable death. If a person is somehow kept fully hydrated at this time, the death would take months instead of weeks, there would be congestion in the lungs from retained fluids, pools of fluids that collect in the throat, etc. Natural congestion also makes it harder for the heart to function. Pneumonia WILL become more frequent and harder to treat.
The major comfort measures when intake is stopped it to keep the mouth moist with swabs and ice chips. Morphine also helps when signs of discomfort are seen.
It appears that you have reached a point where food and drink is no longer possible because of aspiration. The choice is to allow the end to occur in the most comfortable manner. Or you can go with hospitalization, and IV’s, possibly a feeding tube. It will delay the inevitable for a while.
Studies show that the 6 month survival rate is the same with or without feeding tubes.
Of course, he could be one of the few to beat the odds and live a year or two on a feeding tube. This means he will decline much further into Alzheimers. Aspiration will still happen, Pneumonias will be more difficult to treat each time. Death with congestion (in a fully hydrated body) will be more difficult and definitely less pleasant to watch. Death may occur in a noisy hospital with tubes attached and restraints to keep the tubes from being pulled. The alternative is what hospice offers.
You need to decide between hospice care, or aggressive medical treatment against the inevitable decline that occurs at the end of this illness.
An expression that helps many is “He is not dying because he is not eating, he is not eating because he is dying.” In your LO’s case, he is not eating because he is at a point in this disease that he is unable to eat properly - the food is going into the lungs and causing infection.
I am sorry that you are now dealing with this distressing situation.
You may want to ask for a hospice nurse who is more willing to take the time to explain things to you, if that is where the problem occured. Or perhaps you did not understand - factually and emotionally - where you are in this disease (as suggested by the title of this thread)
PS - I personally believe that an order/recommendation to withhold food and fluids should have come from a physician.
Probably, in the next few days of hospitalization, a doctor will bring up the subject of installing a feeding tube. I urge you to think carefully before going this route. You can read more about feeding tubes in an older post FAQ5
Norbert
-----------------------------
The common causes of death in end stage Alzheimers:
- Pneumonia that is not able to be treated (considered to be the most common cause. Weak debilitated people are not able to fight infection effectively coupled with bacteria load discussed above.)
- No longer able to take fluids
- No longer willing to take fluids (refusal)
- Upper urinary track infection (kidneys) that gets into the blood and causes sepsis.
- Other infections that the body is too weak to fight.
This is a difficult subject that no-one wants to read about, but when that stage is reached, it is important to understand so that proper and compassionate decisions can be made.
My Latest Scare by nneal 07/29/06 10:34 PM
(edited slightly for clarity)
2 days ago, my husband ate a good breakfast. At noon, he ate a small amount and then it seemed he had a temp. The hospice nurse came in to check his bed sore and had me pick up antibiotic, morphine, tylenol suppositories and nausea meds. That night between changing under garments, sweaty clothing, trying to get meds down and in and giving carrot juice, etc no progress in his condition was made, (he still had a fever?). The next day the hospice nurse said he is "declining" and takes him off all food, and liquids. I said do you mean that he can't have anything to drink..she said no...he would choke to death. I said what about an i v to keep him hydrated? She says no, the drip would go to his lungs and he would not be able to assimilate the liquid...she then said he is declining. I asked her what she means and she gives me a book about dying...I ask her does this mean I need to call in the family and she says yes. Thinking that a hospice nurse has pretty much seen it all, I am crying my eyes out but decide that she knows best.
After about 2 hours after she left, I began to think that I would rather do anything than watch his mouth swell from lack of fluids and I called the medics and have him transported to the hospital where he is now...this is the 2nd night and he is being giving fluids by iv and eating and a bit more coherent. Now i am confused and don't know what to think - not sure what the next step will be..all his vital signs are perfect. He is being given and antibiotic and his fever is gone. Has anyone been told something like this by hospice?
My response ----
First, Let’s discuss the Hospice situation. Some information is missing. At the very least, you have a communication problem - the hospice nurse is not explaining things to you so that you can understand what is going on and why these decisions are being made. Or perhaps this occurred so suddenly, you were having trouble taking it all in? I will attempt to respond to specific things you have written.
{{{“by noon, he ate a small (meal?), then it seemed he had a temp.”}}}
Apparently he was only able to eat a small meal and had developed a temperature. This suggests that he is aspirating a portion of his food into his lungs and this is what caused the temperature.
{{{“etc no progress in his condition was made”}}}
The temperature was not going down?
{{{“the next day the hospice nurse said he is "declining" and takes him off all food, and liquids.”}}}
This is not the reason patients are taken off food. You should have been given a better explanation. The explanation is below.
{{{“he can't have anything to drink..she said no...he would choke to death.”}}}
Not well explained, but that is where you now are in this disease.
{{{“that i would rather do anything than watch his mouth swell from lack of fluids”}}}
When a person is no longer getting fluids, they need to have a program for keeping the mouth moist. The nurse should have explained this to you.
{{{“he is being given an antibiotic and his fever is gone.”}}}
Right now he is being hydrated with IV, and treated with antibiotic, but this is not a long term solution and hospice is not going to keep someone in subsistence condition using an IV.
When a person is on hospice care, it is understood that the person is dying - although in dementia this can be slow and not look like the dying process. When in hospice, a person is not sent to the hospital unless approved by the hospice. Usually this would be a situation where a procedure is needed to ensure the patients comfort. By sending your husband to the ER without consulting hospice, you discontinued the hospice program.
OK, lets talk basics. The first question is what is happening when he eats? Is he coughing or gagging? Has he stopped coughing or gagging when eating when he had been doing so before? What you have written suggests that at least a portion of what he is eating is going into the lungs and causing the fever. The food in the lungs provides food for bacteria and this causes pneumonia. When this happens, and a significant portion of food and drink is going into the lungs, the doctor will determine that the person can no longer be given food because it is causing aspiration.
It appears that your husband has reached the end of this disease process where lack of brain signals is impairing the swallowing mechanism, and feeding is causing aspiration and this is causing pneumonia. (You can read about swallowing in FAQ15) The aspiration is so great, that the antibiotics will not be effective against the continuous bacteria load in the lungs. Eventually, a major portion of food and liquids will go into the lungs. Often this can be determined - if there is no longer coughing when eating (to cough food out of the windpipe) or there is gurgling in the lungs after eating. When this happens, doctors will say, “no more food or water.”
IV’s will not prevent aspiration. Eventually, even natural saliva will be getting into the lungs and causing aspiration and pneumonia. This happens even when a person is fed directly into the stomach with a feeding tube, for instance.
When food and hydration stops, it is the lack of fluids that will cause the end of life. There is very little discomfort with this. The dehydration causes a more comfortable death. If a person is somehow kept fully hydrated at this time, the death would take months instead of weeks, there would be congestion in the lungs from retained fluids, pools of fluids that collect in the throat, etc. Natural congestion also makes it harder for the heart to function. Pneumonia WILL become more frequent and harder to treat.
The major comfort measures when intake is stopped it to keep the mouth moist with swabs and ice chips. Morphine also helps when signs of discomfort are seen.
It appears that you have reached a point where food and drink is no longer possible because of aspiration. The choice is to allow the end to occur in the most comfortable manner. Or you can go with hospitalization, and IV’s, possibly a feeding tube. It will delay the inevitable for a while.
Studies show that the 6 month survival rate is the same with or without feeding tubes.
Of course, he could be one of the few to beat the odds and live a year or two on a feeding tube. This means he will decline much further into Alzheimers. Aspiration will still happen, Pneumonias will be more difficult to treat each time. Death with congestion (in a fully hydrated body) will be more difficult and definitely less pleasant to watch. Death may occur in a noisy hospital with tubes attached and restraints to keep the tubes from being pulled. The alternative is what hospice offers.
You need to decide between hospice care, or aggressive medical treatment against the inevitable decline that occurs at the end of this illness.
An expression that helps many is “He is not dying because he is not eating, he is not eating because he is dying.” In your LO’s case, he is not eating because he is at a point in this disease that he is unable to eat properly - the food is going into the lungs and causing infection.
I am sorry that you are now dealing with this distressing situation.
You may want to ask for a hospice nurse who is more willing to take the time to explain things to you, if that is where the problem occured. Or perhaps you did not understand - factually and emotionally - where you are in this disease (as suggested by the title of this thread)
PS - I personally believe that an order/recommendation to withhold food and fluids should have come from a physician.
Probably, in the next few days of hospitalization, a doctor will bring up the subject of installing a feeding tube. I urge you to think carefully before going this route. You can read more about feeding tubes in an older post FAQ5
Norbert
-----------------------------
The common causes of death in end stage Alzheimers:
- Pneumonia that is not able to be treated (considered to be the most common cause. Weak debilitated people are not able to fight infection effectively coupled with bacteria load discussed above.)
- No longer able to take fluids
- No longer willing to take fluids (refusal)
- Upper urinary track infection (kidneys) that gets into the blood and causes sepsis.
- Other infections that the body is too weak to fight.
This is a difficult subject that no-one wants to read about, but when that stage is reached, it is important to understand so that proper and compassionate decisions can be made.
I am no longer able to hold your hand my beloved but I cherish the remembrance of your hand in mine...and the wonderful person that touched so many lives with joy. : )