Post by Neo on Jan 19, 2005 21:33:07 GMT -5
Attributed to Norbert
FAQ - Feeding tubes 05/30/04 09:12 PM
Normally, the end stage of Alzheimers would be associated with a person who is bed bound. In your fathers case, difficulty with swallowing indicates that a difficult stage is approaching.
People with Alzheimers develop difficulties swallowing. Some will refuse food or water. With swallowing difficulties, comes a difficulty keeping food and saliva out of the airway. The loss of cough reflex means the person is ineffective in expelling foreign matter from the airway. This foreign matter causes the infection of pneumonia. The pneumonia can be treated with antibiotics, but it is likely to occur again, with increased frequency.
Without feeding tubes, the refusal to take food and water would mean that the end is going to come eventually. While the decision to use a feeding tube might seem logical, there are things about feeding tubes that need to be considered before making that choice.
- Even with a feeding tube, the weight loss of late-stage Alzheimers will continue.
- The feeding tube does not prevent aspiration into the airway; stomach contents and saliva will still get into the airway and cause pneumonia.
- Use of the feeding tube does not increase comfort.
- The presence of the feeding tube will cause distress to the person. Many people with Alzheimers pull the tubes out and require reinstallation at the hospital. In the nursing home, people are often sedated or have physical restraints to keep the tubes from being pulled out.
- In many cases, feeding tubes do not improve the 6 month survival rate.
- In some cases, the feeding tube will prolong life so the person continues to decline as the Alzheimers progresses.
- The feeding tube will not improve quality of life.
- Prolonging life with a feeding tube means there will be advanced dementia care issues to deal with: skin breakdown and bed sores, bed care techniques, physical transfers, repeated infections and pneumonia.
- Choosing to use the feeding tube now, may mean that you are faced with a far more difficult decision later, to discontinue the feeding tube.
- Many people consider a feeding tube to be a medical intervention that prolongs the dying process.
Common problems for people with feeding tubes - bloating, diarrhea, electrolyte imbalance, infection/skin breakdown at the tube site, leakage around the tube, etc
Did your father complete a living will that says he did not want use of feeding tubes? That wish should be respected.
Before considering the feeding tube, I encourage you to read the booklet “Hard Choices for Loving People.” This booklet explains feeding tube issues in great detail. The local Alzheimers Association usually has copies; but it can be ordered or viewed on line at (hardchoices dot com); click on "complete text (PDF)". This booklet was written by a chaplain with experience in hospice and nursing homes.
The local Alzheimers Association usually has copies; but it can be ordered or viewed on line at - www.hardchoices.com/
Click on "complete text (PDF)".
The best thing you can do right now; discuss the swallowing difficulties with the doctor. A speech therapist can recommend methods to minimize swallowing difficulties, and determine the needed consistency of food to allow slow swallow reflexes to be effective.
The Alzheimers Association takes the position that in late stage Alzheimers, feeding tubes are to be discouraged.
For further information, read the following fact-sheets from the Alzheimers Association-
Late Stage Care
Assisted oral feeding and Tube feeding
www.alz.org/documents/national/FSOralfeeding.pdf
Late Stage Care
www.alz.org/living_with_alzheimers_late_stage_care.asp
The previous fact sheet is no longer available
www.alz.org/Care/DaytoDay/latestagecare.asp
Placing feeding tubes in dementia patients had been fairly common. Around 2001 there was a study that showed people with alzheimers on average did not have a better 6 month survival rate compared to those who did not have a feeding tube. This sparked a series of articles in major medical journals arguing against feeding tubes - not only do they not benefit the dementia patient long term but there are negative impact to the persons quality of life because of them (see list above). One of these medical articles is referenced in the tube feeding fact sheet referenced above.
Feeding tubes are often suggested when there are problems swallowing. The other issue that is not referenced very well in Dementia literature is when a person starts to refuse food - is that a good reason to use a feeding tube? That was the situation I faced in my 2 LO's. We always heard "no feeding tubes" and we stuck with it. If a person with dementia is refusing food, will a feeding tube make his quality of life better? No. It will only keep them alive a little longer so that they will be susceptible to death by pneumonia or infection.
The natural first thought is that we cannot let a person starve to death. What is known from experiences with cancer patients (they have there mental faculties and can communicate at the end of life) is that death by not eating and dehydration is fairly painless and without a feeling of hunger. For a person with dementia, it seems to be a pretty good way to end the fight.
Norbert
FAQ - Feeding tubes 05/30/04 09:12 PM
Normally, the end stage of Alzheimers would be associated with a person who is bed bound. In your fathers case, difficulty with swallowing indicates that a difficult stage is approaching.
People with Alzheimers develop difficulties swallowing. Some will refuse food or water. With swallowing difficulties, comes a difficulty keeping food and saliva out of the airway. The loss of cough reflex means the person is ineffective in expelling foreign matter from the airway. This foreign matter causes the infection of pneumonia. The pneumonia can be treated with antibiotics, but it is likely to occur again, with increased frequency.
Without feeding tubes, the refusal to take food and water would mean that the end is going to come eventually. While the decision to use a feeding tube might seem logical, there are things about feeding tubes that need to be considered before making that choice.
- Even with a feeding tube, the weight loss of late-stage Alzheimers will continue.
- The feeding tube does not prevent aspiration into the airway; stomach contents and saliva will still get into the airway and cause pneumonia.
- Use of the feeding tube does not increase comfort.
- The presence of the feeding tube will cause distress to the person. Many people with Alzheimers pull the tubes out and require reinstallation at the hospital. In the nursing home, people are often sedated or have physical restraints to keep the tubes from being pulled out.
- In many cases, feeding tubes do not improve the 6 month survival rate.
- In some cases, the feeding tube will prolong life so the person continues to decline as the Alzheimers progresses.
- The feeding tube will not improve quality of life.
- Prolonging life with a feeding tube means there will be advanced dementia care issues to deal with: skin breakdown and bed sores, bed care techniques, physical transfers, repeated infections and pneumonia.
- Choosing to use the feeding tube now, may mean that you are faced with a far more difficult decision later, to discontinue the feeding tube.
- Many people consider a feeding tube to be a medical intervention that prolongs the dying process.
Common problems for people with feeding tubes - bloating, diarrhea, electrolyte imbalance, infection/skin breakdown at the tube site, leakage around the tube, etc
Did your father complete a living will that says he did not want use of feeding tubes? That wish should be respected.
Before considering the feeding tube, I encourage you to read the booklet “Hard Choices for Loving People.” This booklet explains feeding tube issues in great detail. The local Alzheimers Association usually has copies; but it can be ordered or viewed on line at (hardchoices dot com); click on "complete text (PDF)". This booklet was written by a chaplain with experience in hospice and nursing homes.
The local Alzheimers Association usually has copies; but it can be ordered or viewed on line at - www.hardchoices.com/
Click on "complete text (PDF)".
The best thing you can do right now; discuss the swallowing difficulties with the doctor. A speech therapist can recommend methods to minimize swallowing difficulties, and determine the needed consistency of food to allow slow swallow reflexes to be effective.
The Alzheimers Association takes the position that in late stage Alzheimers, feeding tubes are to be discouraged.
For further information, read the following fact-sheets from the Alzheimers Association-
Late Stage Care
Assisted oral feeding and Tube feeding
www.alz.org/documents/national/FSOralfeeding.pdf
Late Stage Care
www.alz.org/living_with_alzheimers_late_stage_care.asp
The previous fact sheet is no longer available
www.alz.org/Care/DaytoDay/latestagecare.asp
Placing feeding tubes in dementia patients had been fairly common. Around 2001 there was a study that showed people with alzheimers on average did not have a better 6 month survival rate compared to those who did not have a feeding tube. This sparked a series of articles in major medical journals arguing against feeding tubes - not only do they not benefit the dementia patient long term but there are negative impact to the persons quality of life because of them (see list above). One of these medical articles is referenced in the tube feeding fact sheet referenced above.
Feeding tubes are often suggested when there are problems swallowing. The other issue that is not referenced very well in Dementia literature is when a person starts to refuse food - is that a good reason to use a feeding tube? That was the situation I faced in my 2 LO's. We always heard "no feeding tubes" and we stuck with it. If a person with dementia is refusing food, will a feeding tube make his quality of life better? No. It will only keep them alive a little longer so that they will be susceptible to death by pneumonia or infection.
The natural first thought is that we cannot let a person starve to death. What is known from experiences with cancer patients (they have there mental faculties and can communicate at the end of life) is that death by not eating and dehydration is fairly painless and without a feeling of hunger. For a person with dementia, it seems to be a pretty good way to end the fight.
Norbert
