Feeding Tubes

11/25/2020

Tube feeding can actually be comfortable, helpful and dignified, especially with help of Chloraseptic (to prevent discomfort when pushing the tube down the throat) and small tubes (smaller than hospitals usually use, see below). It can be temporary or permanent.

The son of singer Neil Young (of Crosby, Stills, Nash and Young) lives on a feeding tube, with homemade organic food. He's happy.

In this video a young woman shows how she put a thin tube through her nose to her stomach every evening for years and took it out again in the morning, getting extra nutrition all night. She had intestinal problems, and needed more nutrition than she could swallow. She says it "helps you feel better." She could have left the tube in all day, but it was so easy to put in and out that she just left it in at night, with a bag of food formula slowly draining into her stomach while she slept.
youtube.com/watch?v=EbNOZt5VQdY

The main danger mentioned for nose tubes is putting them down into the lungs, rather than the stomach, which may cause coughing and produce acidic content, as the stomach does.

Nose tubes at home are very thin and flexible, a tenth of an inch in diameter (the size measurement is "8 French" and a French is a third of a millimeter). See below for suppliers. Thin tubes are right for feeding. Hospitals are used to much thicker, stiffer tubes, since they use them for sucking liquid from a stomach as well as feeding, and tubes must not collapse under suction. Hospitals' naso-gastric (NG) tubes are usually a quarter to a fifth of an inch diameter (14-18 French). You can ask your hospital to get the smaller tubes or you may need to get them yourself.

Hospitals insert thick tubes, often quickly, without anesthesia. The woman in the video above has this follow-up where she says she used Chloraseptic spray (an over-the-counter sore throat treatment, generic name is phenol) to numb her throat while she put a thin tube down, especially at first. If the hospital does not use it, you can ask a friend to get it at a drugstore.
youtube.com/watch?v=56h3x6QTvlQ

She also said that even in an emergency visit at the hospital, when they decided she needed extra nutrition, she insisted on putting the tube in herself, since hospital staff were too hurried and rough. She does say it feels very "odd" and can cause gagging the first few times, but not after a week.

Often patients are asked to swallow water while the tube goes down, to help it go down like a pill. If the patient is not allowed to swallow water, one video says to suck a dry straw. youtube.com/watch?v=S-GNi6YWID8

Tubes often have a stylet (guide wire, or plastic) to stiffen them during insertion. The stylet is pulled out before putting food in the tube. Nurses used to be advised to use stiff tubes and refrigerate them to make them even stiffer; but an alternative is a stylet to stiffen a flexible tube for insertion, while allowing the tube to be flexible in use.

Getting Thin Nose Tubes

You can find support groups, books and feeding tubes from
Dealers (in alphabetical order) such as:

Following are specialist sellers.:

Homelink (part of VGM) in Waterloo IA works with a national network of home medical providers who may sell you what you need. They have a web inquiry form, or call 800-482-1993. (8-8 eastern, but try them 24/7)
Vygon (Advanced Medical Systems) makes tubes 4-16 French (a nineteenth to a fifth of an inch). 603-743-5988
Halyard (formerly Corpak and Kimberly-Clark) makes tubes 5-12 French (a fifteenth to a sixth inch)
Andersen makes tubes 10 or 16 French (an eighth or fifth of an inch) 800-523-1276.

Single nose tubes may be called levin, levine, dubhoff, dobhoff, dobbhoff, NG, ND, NJ, Corpak, etc. catheters or tubes. Those with pairs of tubes can be called Salem, Miller-Abbott or Cantor.

Here is another young woman who had a tube surgically implanted through her skin and stomach, into her intestine (jejunum), a J-tube. She has had the tube 4 years, can eat some soft foods and liquids. She tried several suppliers of formula until she found one that her body accepted well. She gets some medicines in liquid form, dissolves some of her other pills, and grinds others. People must ALWAYS ASK the pharmacist before breaking, grinding or dissolving pills, since this usually gives a faster release, which can mean a sudden and fatal overdose.
youtube.com/watch?v=rKNCiSbUanw

This is an earlier video by the same woman. Life was harder at that early stage, since she was grinding all her pills and had a nutritional formula which did not agree with her, so it had to go in slowly, and she was on it 24/7. It shows the difference good advice and adjustments can make. She says that when her tube was first put in, the doctors wanted to use local anesthesia. She insisted on general anesthesia and the doctors told her later she was right.
youtube.com/watch?v=92Co-O6Wnr0

Feeding Tube Variations
If you have trouble eating, such as a broken jaw, muscle spasms, weakness, etc., you can get partial nutrition with an IV tube, or complete nutrition with nose or stomach tubes:

A nurse can place an intravenous (IV) tube to carry glucose, salts and medicine into a vein.

You can place a tube through your nose and swallow the end down your throat into your stomach (NG-naso-gastric), or a hospital can lead it all the way into your intestine (ND-naso-duodenal, or NJ-naso-jejunal). It can be flexible and thin: a tenth of an inch. You can also remove it any time.
An interventional radiologist or gastroenterologist can sew a larger tube through the skin into your stomach or intestine. It can appear as a small button on the skin or have several inches of tube sticking out. Radiologists operate directly on the stomach, as a PRG tube (Percutaneous Radiologic Gastrostomy). Gastroenterologists operate less conveniently down an endoscope in the esophagus, as a PEG tube (Percutaneous endoscopic gastrostomy).
G-tubes go to the stomach (gastric). D and J-tubes go to the intestine (duodenum and jejunum).

There are more videos at the bottom of the page to train people for inserting nose tubes.

CATHOLIC TEACHING ON TUBE FEEDING

US Catholic bishops asked the Pope's office about tube feeding, and the Pope's office answered,

"First question: Is the administration of food and water (whether by natural or artificial means) to a patient in a 'vegetative state' morally obligatory except when they cannot be assimilated by the patient's body or cannot be administered to the patient without causing significant physical discomfort?

"Response: Yes. The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented.

"Second question: When nutrition and hydration are being supplied by artificial means to a patient in a 'permanent vegetative state', may they be discontinued when competent physicians judge with moral certainty that the patient will never recover consciousness?

" Response: No. A patient in a 'permanent vegetative state' is a person with fundamental human dignity and must, therefore, receive ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means."

vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_risposte-usa_en.html
Official Commentary: vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_nota-commento_en.html

Another article discusses the compatibility of this Catholic teaching with the Los Angeles guidelines, discussed above, which tell doctors they do not need to offer artificial feeding to certain patients, even if the patients need artificial feeding to live.

Do End-of-Life Guidelines in Los Angeles Differ from Catholic Teaching?

The article on Ethics has a section on guidelines in Los Angeles and southern California, including Providence, a Catholic hospital chain.

Fr. Luke Dysinger has been kind enough to explain how these guidelines that doctors "are not obliged to offer" feeding tubes relate to Catholic teaching that providing food is obligatory "even by artificial means." Fr. Dysinger is a professor at a Catholic seminary, and was on the program for a press conference announcing the guidelines. Nine major health systems adopted the guidelines in May 2014, including a Catholic group which runs 6 hospitals, Providence Health & Services.

The joint guidelines say that doctors "are not obliged to offer" tube feeding:

"In patients with late-stage terminal illness, use of interventions such as... intravenous feeding, gastric food feeding... are generally non-beneficial and may cause an increase in pain and suffering (i.e. harm)." (footnote 5, emphasis added)
And the guidelines say doctors "are not obliged to offer or provide medically non-beneficial treatment" (section 4).

The Vatican said in 2007 (approved in 2007 by Pope Benedict XVI, building on earlier teaching by Popes John Paul II and Pius XII):

"The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life. It is therefore obligatory to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient. In this way suffering and death by starvation and dehydration are prevented."

www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_risposte-usa_en.html
Official Commentary: www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20070801_nota-commento_en.html

Fr. Dysinger wrote:

Thank you for your question concerning Catholic teaching on the necessity of nutrition and hydration at the end of life. The short answer to your question lies in the very important words "in principle" within the statement you quoted. The original Italian for this phrase is "in linea di principia" (Pope John Paul II, "Life Sustaining Treatment..." Mar. 20, 2004; reference and citation below) which, as I understand it, can also be translated as "normally", or "generally speaking". Thus the statement does not – and in fact could not – make an absolute statement that artificial nutrition and hydration must always be used in any clinical setting. There is not, nor could there ever be, such a thing as a "Vatican-approved" list of modalities that are always obligatory or always optional for all Catholics. Everything depends on the unique circumstances of the case and the informed desires and moral intentions of the patient. A key summary of Catholic moral teaching on this point may be found in the Catechism of the Catholic Church:

§2278. Discontinuing medical procedures that are burdensome, dangerous, extraordinary (onerosis, periculosis, extraordinariis), or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.

For many centuries the Catholic Church has emphasized that the definition of "burden" in any particular setting can only be made by the patients themselves (i.e. not by the physician or the clinical ethicist), and that as long as the patient does not intend to cause or hasten death by refusing treatment (whether understood as "medical acts" or "natural means") , such refusal may be permissible if the patient finds the means or acts morally repugnant (St. Alphonsus M. de Liguori Theologia Moralis Tractate 4. On the Fourth and Sixth Precepts [of the Decalog]. Ch. 1, "What is forbidden by the Precept: You shall not kill", § 366-372. original text with translation: http://ldysinger.stjohnsem.edu/ThM_590_Intro-Bioeth/03_hist-devt/05_enlightenment.htm#4._ALPHONSUS_LIGOURI_ )

So the short answer to the polemical question "Are dying Catholics obliged to have feeding tubes," is "no, they are not, unless they want them." I have never met a trained provider of palliative care who recommended or encouraged parenteral feeding for the dying; and it should be added that the Catholic Church is extremely supportive of palliative care, as is stated quite strongly in the Catechism:

§2279 Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable Palliative care is a special form of disinterested charity. As such it should be encouraged.

But your question merits a longer answer (as if the foregoing were not long enough!) The statement you have quoted concerning the necessity for nutrition and hydration first occurred in an address of Pope John Paul II entitled "Life-Sustaining Treatment and the Vegetative State: Scientific Progress and Ethical Dilemmas" (March 20, 2004: http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_it.html). It was clearly the pope's intention to address the then-popular conviction among secular ethicists that it is morally permissible (or even obligatory) to discontinue nutrition and hydration of patients in the persistent vegetative state. The pope's response in this document is fairly detailed, and most specifically emphasizes that PVS patients are not dying, but are, rather, profoundly disabled; and the pope urges that they be treated as we would treat any other disabled persons who are unable to feed or otherwise care for themselves.

The pope also pointed out that PVS is a syndrome rather than a disease, that it is often misdiagnosed, and that we do not, in fact, know with certainty what level of consciousness may be present, even in patients who are correctly diagnosed as being in a persistent vegetative state. This last point is crucial, since a fundamental difference (from the standpoint of care) between dying patients and those who are not dying, is that the dying often refuse food and water, yet do not suffer from a subjective sense of thirst or hunger. This would not be the case in an apparently-"vegetative-state" person who nevertheless retained some level of awareness and sensation. There can be little doubt that such a person would, in fact, suffer very great pain from dehydration and starvation if artificial feeding were simply stopped. Recent research published in reputable medical journals (Neurology, the New England Journal of Medicine) has revealed the pope to have been alarmingly correct: a significant percentage of correctly-diagnosed PVS patients are apparently able to understand and properly respond to verbal commands. Needless to say, ethicists who formerly argued that PVS patients should not be provided with nutrition and hydration ought to more carefully nuance their arguments on the basis of these findings:

["Willful Modulation of Brain Activity in Disorders of Consciousness" Monti et.al., NEJM Feb. 3, 2009, 579-589:
http://www.cogsci.msu.edu/DSS/2011-2012/Owen/Monti%20et%20al.%202010%20NE%20J%20of%20Medicine.pdf . "Probing Consciousness with Event-Related Potentials in the Vegetative State" Faugeras and Rohout, Neurology 77:264–268, July 19, 2011: http://www.unic.cnrs-gif.fr/media/pdf/FaugerasNaccache_Neurology_2011.pdf

So it was in the context of a discussion of the persistent vegetative state, not the terminally-ill or imminently-dying patient, that Pope John Paul stated in the document cited above:

(§4) The sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his confinement to bed. He also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery. I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.

The pope's words have been misconstrued by Catholics and non-Catholics alike as constituting an obligation to use parenteral nutrition. And it was, perhaps, for this reason, that six months later (and shortly before his own death) Pope John Paul II issued another document in which he described and praised palliative care. I hope you do not mind if I quote the relevant section in full: perhaps you will find it useful in your own work:

4. True compassion, on the contrary, encourages every reasonable effort for the patient's recovery. At the same time, it helps draw the line when it is clear that no further treatment will serve this purpose.

The refusal of aggressive treatment is neither a rejection of the patient nor of his or her life. Indeed, the object of the decision on whether to begin or to continue a treatment has nothing to do with the value of the patient's life, but rather with whether such medical intervention is beneficial for the patient.

The possible decision either not to start or to halt a treatment will be deemed ethically correct if the treatment is ineffective or obviously disproportionate to the aims of sustaining life or recovering health. Consequently, the decision to forego aggressive treatment is an expression of the respect that is due to the patient at every moment.

It is precisely this sense of loving respect that will help support patients to the very end. Every possible act and attention should be brought into play to lessen their suffering in the last part of their earthly existence and to encourage a life as peaceful as possible, which will dispose them to prepare their souls for the encounter with the heavenly Father.

5. Particularly in the stages of illness when proportionate and effective treatment is no longer possible, while it is necessary to avoid every kind of persistent or aggressive treatment, methods of "palliative care" are required.

["Address of John Paul II to the Participants in the 19th International Conference of the Pontifical Council for Health Pastoral Care" Friday, 12 November 2004; http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/november/documents/hf_jp-ii_spe_20041112_pc-hlthwork_en.html ]

This second document is not as well-known or frequently cited as the one concerning PVS, but I believe it is essential to read both together.

Question Remaining

Fr. Dysinger makes a strong point above that Catholicism teaches tube feeding is a moral choice for patients to make:,

"definition of "burden" in any particular setting can only be made by the patients themselves (i.e. not by the physician or the clinical ethicist),"

"refusal may be permissible if the patient finds the means or acts morally repugnant",
and quoting the Catechism, "decisions should be made by the patient if he is competent and able."

How can the guidelines say, "Physicians... are not obliged to offer" a list of treatments which includes tube feeding (section 4 and footnote 5)? The guidelines let doctors choose, not necessarily the competent patient. As Rubin wrote, "At its heart the futility debate is a debate about power, who should have it, and how it should be exercised."

TRAINING NURSES ON TUBE FEEDING

There are several instructional videos for nurses, often showing staff touching many surfaces (hair, nose, glasses, flashlight, stethoscope, cough, etc.) then handling the tube as it goes into the patient's nose and throat. The lack of cleanliness is another reason patients may want to insert their own tubes.

Fine diameter tubes are for feeding. Larger diameters are for draining stomach contents. Video also shows a hospital pump to control flow of nutrition into the stomach.
https://www.youtube.com/watch?v=6f0VtagnbGs

Slow insertion of tube. Trainer instructs nurse to document the length of tube left outside the patient.
https://www.youtube.com/watch?v=IIeq4I3pwHA

Slow insertion of big tube by nurse trainee
youtube.com/watch?v=lHp7osmgov8

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