Feeding Tubes

[Indwelling Trinity]

Hi Catherine and all. I have never posted on this forum before but glancing at the topic i could not help but reply to this one.

Having lived with a feeding tube for almost 2 years... i can tell you it is a veritable hell.. a patient should have a right to choose not to put one in or be forced to have one placed or kept in .

To me it is highly extraordinary as the natural method for staying alive is through the nasal and oral routes. I chose to have a tube put in because of my age ( I have stomach paralysis and now early respiratory failure from toxin exposure as a volunteer medical provider at 9/11) in hopes of recovery. After 24 hospitalizations in 2 1/2 years and 16 surgical procedures from complications... I can't stress how extraordinary it is. One is in constant severe pain with, frequent vomiting and diarrhea, dehydration, multiple wound site infections as well needing frequent surgeries and tube placements. Even though you are being fed through the tube, because it is placed below the stomach level, You always feel as if you are starving because the stomach is not giving the brain any signals that it is full.

Think of a day in your life when you you were not nauseous and had to go 24 hours without eating. remember how hard it was to concentrate? How your stomach grumbled for food? Remember the headache from not eating? Now think of living feeling like that every day of the year for years... That is what it is like. Because you cannot take anything by mouth, you have no spit, you are constantly thirsty, ( that is if you do not have an additional IV in.) Your teeth start to fall out because the acid in your mouth is not being neutralized by water... You ask for a drink but they tell you you are getting enough hydration with the tube feedings... you get to a point where you are begging just to have a piece of crushed ice just to wet your cracked lips or to assuage your cracked parched tongue.... and it is denied you.

You lose your independence and your dignity...You are now a burden to others... Can anyone begin to see or feel how EXTRA- Ordinary this condition is?

Oxygen (unless one is on a ventilator) and hydration are neither very painful nor very invasive but tube feeding is a whole other ball game.

In medicine when a patient asks for no extraordinary measures, that means no CPR, ALS ventilators and tube feedings.. however it does not exclude hydration and oxygen by mask or nasal cannula, or giving pain control.

For Myself, after two years of hell, I finally took out my own tubes and sewed myself up so bad was the pain.

My rationale was, if the Lord still wanted me on this earth he would allow me to eat and drink enough to survive.. It has been a year now for me without tubes. I can eat about two small pureed meals 3-4 days a week and sip fluids all day and night. I still have stomach paralysis and still vomit multiple times daily. In the past three months i have been hospitalized 4 times for dehydration and gastric and esophageal hemorrhaging... but i no longer have to deal with the excruciating pain of the tubes. Nor do i have to suffer the humiliation of being accused of drug seeking for asking for pain control due to the tubes constantly rubbing in and out of a open wound in my intestines each time i move. It is funny my so called drug addiction ceased 2 days after the tubes were out.

Do I still get down often? Yes... Severe chronic disease is not easy for anyone... but this the Lord allows. and i guess after a year without tubes in , the Lord still wants me on this earth for some reason..one which i seriously cannot fathom... but it is his will and that is where i want to be.

I spent 16 years practicing medicine. But now being on the other side of the bed, what i can tell you first hand is that we who have not been on the other side of that bed on a chronic level, have no clue as to the real sufferings our patients are going through mentally, spiritually and physically. I wish i would have understood then what i know now. It surely would have changed my decision making emphasis for my patients.

Choosing not to prolong an illness from which there is no hope of recovery is not equivalent to euthanasia or neglect. In some cases it can be the most compassionate response a severely ill patient can be given aside from spiritual and emotional support... which is often lacking for the patient. What a patient needs most is not medicine, but compassion, understanding and knowing that they are not alone and that somebody really does care.

just my opinion from a birds eye view on this topic

Hugs,
IT

Edited January 11, 2012 by Indwelling Trinity

[AccountDeleted]

I think this has been answered quite well on the Catholic Q&A.

In your case, I.T. you are conscious and sensible and can determine your own desires and needs. In the case of someone who is not able to make these decisions for themself, then there is usually someone appointed to handle decisions for them. As you have pointed out, for someone to make this decision for another is difficult since they cannot know or understand exactly what is involved from the patient's point of view.

This is a very difficult and complex issue and even some of Mother Teresa's nuns got upset and not knowing what to do in this situation. This article talks about their concerns and details the Church Teaching on it very well:
[url="http://www.americancatholic.org/messenger/jan2006/feature1.asp"]http://www.americancatholic.org/messenger/jan2006/feature1.asp[/url]

Here is a short quote from the article.

[quote]

These focused debates about a specific treatment for a rare condition should not, however, lead anyone to conclude that there has been any fundamental change in Catholic teaching about life-sustaining treatments, even though the public discussion surrounding the Schiavo case could understandably have led many to think that. To conclude, the Church teaches that:

• We should never euthanize patients or assist them in suicide;

• Sometimes certain life-sustaining treatments (including feeding tubes) are “extraordinary” (morally optional) and can be withheld or withdrawn;

• Special care must be taken in determining that feeding tubes are extraordinary, particularly if the patient suffers from a rare neurological condition called post-coma unresponsiveness.

...

Ethical Resources
Sometimes we need help in applying the general principles about “ordinary” and “extraordinary” medical care to individual cases. Here are a few resources for that.
• The complete text of Ethical and Religious Directives for Catholic Health Care Services (United States Conference of Catholic Bishops, fourth edition, 2001) is available at usccb.org/bishops/directives.shtml.
• The National Catholic Bioethics Center has an emergency consultation number (Monday through Friday, 8 a.m. to 4 p.m. EST): 215-877- 2660.
• Information about the National Catholic Bioethics Quarterly is available at [url="http://www.ncbcenter.org/ncbq.asp"]www.ncbcenter.org/ncbq.asp[/url].
• The Web site of the Canadian Catholic Bioethics Institute is [url="http://www.utoronto.ca/bioethic/Pages/frameset.htm"]www.utoronto.ca/bioethic/Pages/frameset.htm[/url].

[/quote]

[Indwelling Trinity]

Dear Nunsense and all... First my apologies for posting on the Q&A Board. I did not know that no response was allowed as it did not specifically say that in the guidelines. I was in no way trying to pose as a "CHURCH SCHOLAR" as i surely am not. In the initial Question the poster did not speak about incompetent patients but nursing home patients in general.

I agree fully that in the case of mental incompetence such as Alzheimers, neurological disorders etc... Decisions must be made in the best interest of these patients according to proper moral guidelines expressed by the church.

However the situation is very complicated and murky at times as technology advances more rapidly than moral theologians and Church ethicists can keep up with. This makes decision processes difficult not only for family or legal guardians but for Medical professionals also.

My only reasons in responding was that in certain cases such measures are extraordinary as in the case of someone with an incurable terminal illness etc... where there is no hope of recovery. In such cases to take such measures is only to prolong suffering without the possibility of any potential positive outcome.

In view of this fact, it was only my wish to give others a P.O,V. from a patient standpoint so as to consider certain mitigating factors for having to undergo such invasive procedures. Perhaps if family or guradians were more aware of the true amount of patient suffering, they would have another perspective and seek proper counsel before choosing to continue such measures and after doing so be relieved of the feeling of having to make guilt ridden choices for their loved ones.

As a medical Practitioner i have seen terminal patients linger for almost a year in pure torment because family members feel they are required to continue advanced life support measures at all costs.

Please understand me...I AM NOT IN ANY WAY IN FAVOR OF EUTHANASIA OR NEGLECT...That is genocide. But just as i believe deeply in the right to life, so too do i believe in the rights of a patient to die a natural death with respect, dignity and all possible care as they go from this life into the arms of God.

As a Medical professional i would encourage others to have advanced directives or a living will in place so as to avoid unnecessary pain and anguish for all involved.

This is just my opinion and mine alone.

Again my apologies for posting in the wrong forum.

Edited January 12, 2012 by Indwelling Trinity

[AccountDeleted]

I.T. - I wasn't referring to you alone, as I have noticed another person with a Religious tag who has answered a question there and I am pretty sure she doesn't have a theology degree either. I just felt that as that forum is held up as being answered only by those with the necessary theoretical knowledge (as demonstrated through their educational qualifications), it seemed strange that anyone with a Religious tag could answer there now. At one time I had a Religious tag too, and I hardly consider myself qualified to answer those kinds of questions even if I do have a Masters degree... it is not in Theology or another closely related area. Being a religious (especially one who is not yet fully professed) does not make one an expert on Church matters as I well know myself. There are even nuns who have been in religious life for 50 years who do not have this kind of knowledge. I just wanted to make sure that those who post there are stating Church teaching and not just their own opinions (as we all have plenty of those! )

Your points about feeding tubes are very good, and show your personal experience in the matter. This is a good forum for them and I appreciate that you took the time to write such a lengthy post about it. Having been a nurse and worked with the elderly and dying for many years, I also have my opinions on the subject, but also have a need to know the official Church teachings (that article was good for me too as it had canons and quotes from Popes too). Sometimes my personal feeling might influence me and that's when I need to refer to what the Church is really saying so I can have a well formed conscience and not just my own human nature.

Thank you for sharing. It opened my eyes to a lot of things. I'm just glad there is another thread about it here though so I am happy that a mod moved your post instead of deleting it.

Edited January 12, 2012 by nunsense

[OnlySunshine]

I often wondered how it was for a patient with a GI tube in my care at the nursing home I was a CNA at. I don't know what her medical history was (nothing was ever revealed to the CNAs, though I wish it was because we need to know these things), but I assumed she had a stroke. She was totally dependent on caregivers and was in a persistent vegetative state. She was unable to communicate at all, but she was awake throughout the day because her eyes were open and she responded to touch.

I never knew if she was in any pain. Her lips were constantly dry and she was NPO because she lacked the cognitive function in order to swallow. I felt very bad for her situation because I was wondering if her suffering was being prolonged unnecessarily. I do not advocate euthanasia and am strongly pro-life, but it makes me wonder if the tube feedings weren't in place, would she still be around? This is obviously a very sensitive issue.

Thanks, I.T., for providing a patient's viewpoint.

Edited January 12, 2012 by MaterMisericordiae

[MissyP89]

God bless you, IT, for your honesty. The question was answered nicely for me, but what you've said here absolutely makes it clear for me. Thank you. (And thanks, too, to Catherine and Phatty for their responses.)

[beatitude]

I have also been fed by tube at one point, and I can testify to the fact that it is a painful process (although my experience doesn't seem to have been as bad as IT's, especially as for me it was just a short-term measure).

There are two different types of tube-feeding - naso-gastric, which is what I had (the tube going through your nose and down into the stomach) and something called a PEG feed, which is when you have surgery on your stomach to insert a tube there. This is less invasive, as you don't feel like you are swallowing a washing line all the time and the tube isn't visible, but for very severely ill patients it is often counterproductive for them to have surgery requiring a general anaesthetic that will create a wound that might not heal well. They might not be strong enough for that.

To my knowledge, PEG feeds are inserted when a patient has an illness that means they can't eat or swallow normally, but their life expectancy isn't compromised. I have a friend with a PEG who has a perfectly normal life expectancy - they gave her the PEG because she can't swallow safely, and it's not practical for her to go through her whole life with a nasal tube. But I can see that for terminally ill people, this might not be a good option.

[AccountDeleted]

[quote name='beatitude' timestamp='1326350888' post='2367481']
I have also been fed by tube at one point, and I can testify to the fact that it is a painful process (although my experience doesn't seem to have been as bad as IT's, especially as for me it was just a short-term measure).

There are two different types of tube-feeding - naso-gastric, which is what I had (the tube going through your nose and down into the stomach) and something called a PEG feed, which is when you have surgery on your stomach to insert a tube there. This is less invasive, as you don't feel like you are swallowing a washing line all the time and the tube isn't visible, but for very severely ill patients it is often counterproductive for them to have surgery requiring a general anaesthetic that will create a wound that might not heal well. They might not be strong enough for that.

To my knowledge, PEG feeds are inserted when a patient has an illness that means they can't eat or swallow normally, but their life expectancy isn't compromised. I have a friend with a PEG who has a perfectly normal life expectancy - they gave her the PEG because she can't swallow safely, and it's not practical for her to go through her whole life with a nasal tube. But I can see that for terminally ill people, this might not be a good option.
[/quote]

At the hostel where I recently worked, the residents who were on hospice care did not have feeding tubes. One of the reasons for this is that the staff were mostly PCAs (caregivers) and not trained nurses, and the residents who were at the point where they were refusing all food and drink were usually those with advanced dementia or Alzheimer's. If a feeding tube had been used, most of them (maybe all of them) would have been constantly pulling the tubes out - especially the naso-gastric ones, but most likely also the PEG ones and it would have been impossible to have monitored them 24/7 with the number of residents to take care of compared with the ratio of caregivers and nurses. Families were always advised of their option to have their relative transferred to a hospital if they wanted them to have a tube, but in the time I was there, not one relative requested this. Since their loved ones were already unable to understand what was being done to them, it was kinder not to use any invasive measures to try to force them to receive nutrition or fluids, although staff did offer drinks frequently, including those with nutrients in them. Sometimes we could get someone to drink a little, but when they didn't, we simply gave them oral care and sips of whatever they would accept. I don't see this as euthanasia as nothing was denied them, but neither was anything forced on them.

[OnlySunshine]

[quote name='nunsense' timestamp='1326351441' post='2367486']
At the hostel where I recently worked, the residents who were on hospice care did not have feeding tubes. One of the reasons for this is that the staff were mostly PCAs (caregivers) and not trained nurses, and the residents who were at the point where they were refusing all food and drink were usually those with advanced dementia or Alzheimer's. If a feeding tube had been used, most of them (maybe all of them) would have been constantly pulling the tubes out - especially the naso-gastric ones, but most likely also the PEG ones and it would have been impossible to have monitored them 24/7 with the number of residents to take care of compared with the ratio of caregivers and nurses. Families were always advised of their option to have their relative transferred to a hospital if they wanted them to have a tube, but in the time I was there, not one relative requested this. Since their loved ones were already unable to understand what was being done to them, it was kinder not to use any invasive measures to try to force them to receive nutrition or fluids, although staff did offer drinks frequently, including those with nutrients in them. Sometimes we could get someone to drink a little, but when they didn't, we simply gave them oral care and sips of whatever they would accept. I don't see this as euthanasia as nothing was denied them, but neither was anything forced on them.
[/quote]

Since I am not a Church scholar, I am not properly read up on this, but do you know what is permissible in the case of someone who cannot request their own medical care because they are in a persistent vegetative state? I actually never saw her family because they always came on the evening shift and I worked days. I just think it's rather strange that someone would request a feeding tube if the person had no hope of survival without it and their quality of life was greatly diminished. I know that, in the case of Terri Schiavo, there was some crazy stuff at work regarding her family and she was basically in the same position. Plus, she already had the feeding tube placed.

Would refusing to insert a GI tube in a persistent vegetative patient be cruel?

[AccountDeleted]

[quote name='MaterMisericordiae' timestamp='1326352129' post='2367490']
Since I am not a Church scholar, I am not properly read up on this, but do you know what is permissible in the case of someone who cannot request their own medical care because they are in a persistent vegetative state? I actually never saw her family because they always came on the evening shift and I worked days. I just think it's rather strange that someone would request a feeding tube if the person had no hope of survival without it and their quality of life was greatly diminished. I know that, in the case of Terri Schiavo, there was some crazy stuff at work regarding her family and she was basically in the same position. Plus, she already had the feeding tube placed.

Would refusing to insert a GI tube in a persistent vegetative patient be cruel?
[/quote]

You obviously didn't read the article that I posted the link to above. But here is a part of it ...

[quote]

[url="http://www.americancatholic.org/messenger/jan2006/feature1.asp#top"][b]Advance Directives[/b][/url]

The main issue in the case of Terri Schiavo was actually not the feeding tube itself but rather who should decide whether she should have the feeding tube. She had left no “advance directive” (such as a living will or a durable power of attorney for health care) stating what she would have wanted done in such circumstances or who should make medical decisions on her behalf. Deciding what to do for her would have been easier if she had left such a directive.

Broadly speaking, the Catholic Church supports advance directives, provided these are executed in a way that is consistent with Church teachings. In fact, if a person, motivated by a charitable desire to relieve others of the burdens such care might impose, executes an advance directive that states that he or she would not want artificial hydration and nutrition if ever in a state of post-coma unresponsiveness, then even the most conservative of Catholic moralists would conclude that the treatment should not be given.

The Church’s deepest worry about patients like Schiavo is that they—or even patients who are not as debilitated as she was—will come to be considered mere burdens. The Church worries that their dignity will be impugned if they are thought of as “vegetables.”
It is indeed a failure of charity if we decide not to provide medical treatment for patients merely because we don’t consider them worthy of our time and resources. But this does not mean that we can never act with a spirit of profound Christian charity and humility, fully respecting the dignity of dying persons, if we decide that it is best to let them return to their Maker. We can never kill patients, but we can, under certain conditions, allow them to die.

Debate persists within the Church about the conditions under which family members can be allowed to determine that the provision of tube feeding to persons who suffer from post-coma unresponsiveness represents “extraordinary means.”

This debate reflects ongoing questions about the symbolic nature of feeding, whether someone in an unresponsive state can be said to suffer and whether it is ever possible to construe the intentions of a third party discontinuing life-support for a person in that state as anything other than an intention to make the person dead.

These focused debates about a specific treatment for a rare condition should not, however, lead anyone to conclude that there has been any fundamental change in Catholic teaching about life-sustaining treatments, even though the public discussion surrounding the Schiavo case could understandably have led many to think that. To conclude, the Church teaches that:

• We should never euthanize patients or assist them in suicide;

• Sometimes certain life-sustaining treatments (including feeding tubes) are “extraordinary” (morally optional) and can be withheld or withdrawn;

• Special care must be taken in determining that feeding tubes are extraordinary, particularly if the patient suffers from a rare neurological condition called post-coma unresponsiveness.

[/quote]

[Indwelling Trinity]

[quote name='nunsense' timestamp='1326337512' post='2367345']
I.T. - I wasn't referring to you alone, as I have noticed another person with a Religious tag who has answered a question there and I am pretty sure she doesn't have a theology degree either. I just felt that as that forum is held up as being answered only by those with the necessary theoretical knowledge (as demonstrated through their educational qualifications), it seemed strange that anyone with a Religious tag could answer there now. At one time I had a Religious tag too, and I hardly consider myself qualified to answer those kinds of questions even if I do have a Masters degree... it is not in Theology or another closely related area. Being a religious (especially one who is not yet fully professed) does not make one an expert on Church matters as I well know myself. There are even nuns who have been in religious life for 50 years who do not have this kind of knowledge. I just wanted to make sure that those who post there are stating Church teaching and not just their own opinions (as we all have plenty of those! )

Your points about feeding tubes are very good, and show your personal experience in the matter. This is a good forum for them and I appreciate that you took the time to write such a lengthy post about it. Having been a nurse and worked with the elderly and dying for many years, I also have my opinions on the subject, but also have a need to know the official Church teachings (that article was good for me too as it had canons and quotes from Popes too). Sometimes my personal feeling might influence me and that's when I need to refer to what the Church is really saying so I can have a well formed conscience and not just my own human nature.

However, i do not think i have stepped outside of church teachings on the matter and if i have, it is not intended and i willingly withdraw anything outside of those teachings.

Thank you for sharing. It opened my eyes to a lot of things. I'm just glad there is another thread about it here though so I am happy that a mod moved your post instead of deleting it.
[/quote]

Nunsense,

No offense taken my friend. The error was all my own. I have only a BA in spiritual theology which by no mean makes me an expert on anything theologically but i was not trying to write as a theological expert by any means.

My predominant area of expertise is In Medicine and when my Hearing loss made it impossible for me to do Cardio-thoracic surgery or Internal medicine anymore, I returned to study in Clinical psychology at the doctoral level which i could not finish because of the progression of my illness.

And yes.. TY to Lil Red for moving this post to this forum. It means a lot to me. I tend to be very passionate about things.. but am a very far shot from being always right. I appreciate everyone's input and kindness in accepting my apology.


IT

Edited January 12, 2012 by Indwelling Trinity

[Indwelling Trinity]

[quote name='beatitude' timestamp='1326350888' post='2367481']
I have also been fed by tube at one point, and I can testify to the fact that it is a painful process (although my experience doesn't seem to have been as bad as IT's, especially as for me it was just a short-term measure).

There are two different types of tube-feeding - naso-gastric, which is what I had (the tube going through your nose and down into the stomach) and something called a PEG feed, which is when you have surgery on your stomach to insert a tube there. This is less invasive, as you don't feel like you are swallowing a washing line all the time and the tube isn't visible, but for very severely ill patients it is often counterproductive for them to have surgery requiring a general anaesthetic that will create a wound that might not heal well. They might not be strong enough for that.

To my knowledge, PEG feeds are inserted when a patient has an illness that means they can't eat or swallow normally, but their life expectancy isn't compromised. I have a friend with a PEG who has a perfectly normal life expectancy - they gave her the PEG because she can't swallow safely, and it's not practical for her to go through her whole life with a nasal tube. But I can see that for terminally ill people, this might not be a good option.
[/quote]


Just hijacking for a moment...

I just had a NG Tubed placed in the end of September for a GI bleed and torn esophagus. In truth although it was nasty going down i found it much easier to tolerate and would take it any day over a Peg or GT. Peg and GThave a high complication rate and also one needs to place a patient under general anesthesia which is always a risk.

However, although less invasive, Naso-gastric tubes are only for the short term treatment to either feed or give the stomach a rest. They are impractical in the unconscious patient as there is a very high risk of aspiration and pneumonia, So sometimes if the patient is unconscious there is no other alternative but to go to a peg even given the higher risk.


Hugs,

IT

Edited January 12, 2012 by Indwelling Trinity

[AccountDeleted]

[quote name='Indwelling Trinity' timestamp='1326359706' post='2367506']
Just hijacking for a moment...

I just had a NG Tubed placed in the end of September for a GI bleed and torn esophagus. In truth although it was nasty going down i found it much easier to tolerate and would take it any day over a Peg or GT. Peg and GThave a high complication rate and also one needs to place a patient under general anesthesia which is always a risk. :the end:

However, although less invasive, Naso-gastric tubes are only for the short term treatment to either feed or give the stomach a rest. They are impractical in the unconscious patient as there is a very high risk of aspiration and pneumonia, So sometimes if the patient is unconscious there is no other alternative but to go to a peg even given the higher risk.
[/quote]

How can it be hijacking when we are talking about feeing tubes?

I think it is amazing how God gives each of us tailor made sufferings. I wouldn't wish what I have been through on anyone else, but then when I hear about other people's sufferings, like yours, I see how perfectly each one of us is taken care of. I wouldn't want to go through what you have, but at the same time, I don't know if anyone else could have handled some of the things I have been through either.

Maybe when we think about the measures we use for others (like feeding tubes and other extraordinary and not so extraordinary measures), we need to remember that even though we may not be able to totally prevent all suffering, we can at least pray that God give each person the strength and grace to handle that suffering.

After all, one of St Therese's special graces was the way in which she handled her incredibly painful (and slow) death. Sure, sometimes she gave way to expressions of that suffering when it became unbearable, but for the most part, she set a beautiful example of suffering without complaints and offering it all up. For those who are unable to offer up their suffering because of mental incompetence or being in a coma, etc, perhaps we who care for them can do their praying for them?

[Indwelling Trinity]

[quote name='nunsense' timestamp='1326360420' post='2367507']
How can it be hijacking when we are talking about feeing tubes?

I think it is amazing how God gives each of us tailor made sufferings. I wouldn't wish what I have been through on anyone else, but then when I hear about other people's sufferings, like yours, I see how perfectly each one of us is taken care of. I wouldn't want to go through what you have, but at the same time, I don't know if anyone else could have handled some of the things I have been through either.

Maybe when we think about the measures we use for others (like feeding tubes and other extraordinary and not so extraordinary measures), we need to remember that even though we may not be able to totally prevent all suffering, we can at least pray that God give each person the strength and grace to handle that suffering.

After all, one of St Therese's special graces was the way in which she handled her incredibly painful (and slow) death. Sure, sometimes she gave way to expressions of that suffering when it became unbearable, but for the most part, she set a beautiful example of suffering without complaints and offering it all up. For those who are unable to offer up their suffering because of mental incompetence or being in a coma, etc, perhaps we who care for them can do their praying for them?
[/quote]


Beautiful! Thank you!