In chapter 5 the limited effectiveness of artificial feeding was discussed relative to cachexia, anorexia, and asthenia. I now consider in more detail tube feeding as a means of providing hydration and nutrition. The following "Fast Fact" on tube feeding was generated to provide clinicians with some basic guidelines for their discussions and decision making with patients and families.16 It is remarkable how often clinicians suggest tube feeding or place tubes with no data to support the purported goals of therapy.
Tube feeding is frequently used in chronically ill and dying patients. The evidence base for much of this use is weak at best. In the list below some of what is known (and not known) is summarized about tube feeding for specific indications.
It is important to understand that tube feeding should always be considered relative to patient goals. Physicians should be prepared to discuss tube feeding as an option bearing in mind what evidence (or lack thereof) exists that tube feeding will help reach such goals.15,18-20
Tube feeding can be extremely helpful for patients with acute medical problems and for certain patients with chronic illnesses such as amyotrophic lateral sclerosis who want and need nutritional support. However, the benefit of tube feeding in most advanced and terminal illnesses is less clear. A large observational study of more than 7000 patients who received PEG (percutaneous endoscopic gastrostomy) tubes found that the three top reasons for PEG tube placement were organic neurologic disorders such as dementia (29%), stroke (19%), and head and neck cancer (16%). Of these, 24% of patients died during the hospitalization in which a PEG tube was placed, and median survival was 7.5 months.21 Meier and colleagues followed 99 patients with advanced dementia who were hospitalized. A new tube for feeding was given to 50%. Only 37% left without a tube (17% came and left with a tube). Median survival for all patients followed was 175 days, with no statistically significant difference in survival for patients who received tube feeding compared to those not tube fed (p = .90).22 Thus, in patients with advanced dementia, who undergo PEG tube placement with remarkable frequency, there is no evidence for life prolongation.
What about quality of life? Few studies have been done. A small study of 150 patients chronically tube fed in a community cohort study found no evidence of improvement in functional status, nutritional status, or quality of life when followed prospectively. As in the other studies cited above, mortality was approximately 50% at one year.23
The list above briefly discusses the use of tube feeding for the prevention of aspiration pneumonia and points out that evidence to support this common practice is very limited. Although some benefit may exist for mild to moderate post-stroke patients, there is no evidence of benefit in patients with very advanced illness due to strokes who are bedridden.
Often, patients thought to be at risk for aspiration undergo videofluoroscopy to look for evidence of food "going down the wrong way." Based on this, it has become common practice to recommend tube feeding for those patients who demonstrate aspiration. It seems to make sense. Food going down the wrong way is a bad thing. It would seem that if we just bypass this problem, everything will be alright. This seems to be the story upon which clinicians justify this very common chain of events - except that there is no evidence that this helps most patients. It is worth noting that videofluoroscopy was never developed as a predictive test for aspiration pneumonia; it was developed to help speech therapists understand the physiology of swallowing disorders for the purpose of assisting therapists in training patients in new ways of swallowing. Apparently, it works well for this purpose. Clinicians who perform videofluoroscopy found patients with evidence of food "going down the wrong way" and felt they had to do something.
How can we make sense of the findings to date (admittedly based on limited studies) that NG and PEG tubes do not decrease the incidence of aspiration pneumonia in most cases? While more studies would be helpful, perhaps we should consider some alternative stories. Why might tube feeding not decrease the risk of pneumonia and why might it not prolong survival? First, by bypassing eating we have overridden a whole host of feedback mechanisms that inform people whether their stomachs are empty or full. Override risks overflow (regurgitation with aspiration and diarrhea). Second, the functioning of the upper intestinal track appears to be profoundly affected. The physical presence of the tube increases the risk of reflux by inhibiting normal motility, which contributes to the problem of overflow.24 Finally, we might challenge the assumption that aspiration pneumonia is tightly linked to aspiration of food, as demonstrated on videofluoroscopy. Although, arguably, bypassing the system may decrease the probability of food aspiration, patients may still aspirate saliva, which contains large numbers of bacteria. This cannot be prevented. My sense is that for most patients aspiration pneumonia is not so much a disease to be prevented as it is a sign of often unrecognized global physiologic decline. The immune system is often compromised for reasons other than malnutrition, and this makes the patient more susceptible to infections. Because of general weakness and inhibition of the cough reflex, patients often cannot clear their airways of secretions, and this increases the probability of pneumonia. None of these problems are correctable by tube placement.
Why, then, despite the lack of evidence in most cases for efficacy relative to the goals of life prolongation and improved quality of life, has tube feeding persisted in its popularity? A basic reason is that clinicians and families have not seriously questioned the common story line that assumes that not eating and drinking is simply a mechanical problem that can be solved by bypassing the normal intake mechanism. Callahan examined the decision-making processes that resulted in PEG tube placement in 100 patients using questionnaires and semistructured interviews. Tube placement usually occurred in the midst of acute decompensations that elicited much distress on the part of clinicians, patients, and families. The major finding of this study was that "Patients, caregivers, and physicians are often compelled to make decisions about long-term enteral feeding under tragic circumstances and with incomplete information. Decision-makers typically do not perceive any acceptable alternatives." Decisions for tube feeding were usually "nondecisions" that proceeded along set story lines that went unquestioned. "Physicians have clear patterns of triage for percutaneous endoscopic gastrostomy, but the assumptions underlying these patterns are not well supported by the medical literature."25 The underlying issue seems less medical than cultural and psychological.
Often, I find myself in the position of recommending against therapies such as tube feeding when I believe they will not be beneficial to the patient. To the best of my ability, I try to explain what is known and not known about the potential benefits and burdens of tube feeding. However, given that this is a culturally and psychologically loaded issue, families very often have trouble accepting my story, which seems so at odds with their own story lines. In listening to their stories about why they think artificial nutrition is needed, I am struck by how much is assumed (for example, that bypassing the system will automatically fix the problem or that not feeding artificially is the equivalent of starvation) and by how little insight people often have into the psychological processes that frequently underlie their requests. (The same can be said for clinicians.) As I will discuss further in Chapter 8 on communication, if my explanation, my story, of why I believe artificial hydration or nutrition would not be beneficial is understood simply as an invalidation their stories, it will, quite reasonably, be rejected. The trick, which is far easier said than done, seems to be to validate those elements in the family (or clinician) story line that make sense, at least in terms of intent, and try to reframe, or at least suggest alternative interpretations (such as understanding that not feeding does not equal starvation), in terms of their story line. In Table 6.1, in abbreviated fashion, I outline how this might be done for a request for artificial nutrition when I believe it would not be helpful.
|Table 6.1. Reframing Requests for Artificial Nutrition|
|He is dying because he is not able to eat or drink.|
|A) I understand how worrisome that must be.||A) Empathetic validation of concern.|
|B) Of course, it must seem that getting food and water into him would be important.||B) Validation that their explanation, if true, would suggest the appropriateness of artificial nutrition.|
|C) We have noticed that he only wants small amounts of food and water.||C) Drawing attention to information available to suggest an alternative explanation.|
|D) People with this illness who are dying tend not to be hungry or thirsty.||D) Sharing alternative explanation that validates linkage between nutrition and dying, but in a different way, thereby reframing the issue.|
|We can't let him starve to death (die of thirst), which can be prevented by artificial feeding.|
|A) You are right, if he were starving or thirsty and we could prolong his life through such feeding, that would make sense.||A) Validation of internal consistency of their story.|
|B) While it may seem like starvation, what is going on is somewhat different.||B) Suggest possible alternative interpretation.|
|C) It would be great if tube feeding worked that way. However, in other patients with this illness we have found that tube feeding neither prolongs life nor makes people feel better.||C) Share more information that suggests that tube feeding will not accomplish their goals, which are reasonable in and of themselves.|
|So we're just going to do nothing.|
|A) Not at all! This is a time to pay special attention....||A) Acknowledge "need to nurture" and reframe current situation in terms of this.|
|B) He may not be able to eat or drink much, but is there some special food he really liked?||B) Involve family (facilitating nurturing) concretely in a new way - feeding for pleasure vs. calories.|
|C) At this stage dry mouth is a big problem. You could really help us care for him by giving ... (ice chips, swabs, lemon drops, etc.).||C) Identify how family can be of help in paying special attention, thereby forming an alliance.|
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.