Avoiding the use of long-term parenteral support in patients without intestinal failure: A position paper from the... 2024 Lal et al

Full title: Avoiding the use of long-term parenteral support in patients without intestinal failure: A position paper from the European Society of Clinical Nutrition & Metabolism, the European Society of Neurogastroenterology and Motility and the Rome Foundation for Disorders of Gut–Brain Interaction

Abstract

The role of long-term parenteral support in patients with underlying benign conditions who do not have intestinal failure (IF) is contentious, not least since there are clear benefits in utilising the oral or enteral route for nutritional support. Furthermore, the risks of long-term home parenteral nutrition (HPN) are significant, with significant impacts on morbidity and mortality. There has, however, been a recent upsurge of the use of HPN in patients with conditions such as gastro-intestinal neuromuscular disorders, opioid bowel dysfunction, disorders of gut–brain interaction and possibly eating disorders, who do not have IF.

As a result, the European Society of Clinical Nutrition and Metabolism (ESPEN), the European Society of Neuro-gastroenterology and Motility (ESNM) and the Rome Foundation for Disorders of Gut Brain Interaction felt that a position statement is required to clarify – and hopefully reduce the potential for harm associated with – the use of long-term parenteral support in patients without IF. Consensus opinion is that HPN should not be prescribed for patients without IF, where the oral and/or enteral route can be utilised. On the rare occasions that PN commencement is required to treat life-threatening malnutrition in conditions such as those listed above, it should only be prescribed for a time-limited period to achieve nutritional safety, while the wider multi-disciplinary team focus on more appropriate biopsychosocial holistic and rehabilitative approaches to manage the patient's primary underlying condition.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/nmo.14853

 

"Hypermobility Disorder/hypermobile Ehlers Danlos Syndrome (HD/hEDS) is an emerging condition for which there are increasing referrals for PN.20 DGBIs, especially functional dyspepsia and irritable bowel syndrome are strongly associated with HD/hEDS.21, 22 There is a large overlap with fibromyalgia and chronic fatigue/myalgic encephalomyelitis (ME) with a core feature of chronic pain due to both peripheral and central sensitisation, overlapping with anxiety and a dysregulated autonomic nervous system including postural orthostatic tachycardia syndrome (POTS). As there is also no established evidence that patients with HD/hEDS have small intestinal malabsorptive failure, PN should be avoided other than again in life threatening extremis as a temporary bridge to pain management and rehabilitative MDT therapies.23 This may be particularly important since anecdotal clinical experience suggests that HPN-related CRBSI are more frequent in this patient cohort."

 

Man it’s so frustrating when they can’t even get the name right. Doesn’t inspiire any confidence.

 

Well whichever way you want to look at it, dying with a body weight of 30kg kinda does imply a failure of nutrient absorption. And hoping for "the wider multi-disciplinary team focus on more appropriate biopsychosocial holistic and rehabilitative approaches to manage the patient's primary underlying condition" is not going to be saving lives.

Contrast with psychiatry's use of ECT in our other thread. They don't know how it works and it can have significant side-efects, but they use it because they know it saves lives.

 

In relation to very severe ME/CFS presumably it is exceedingly rare to be looking at parenteral nutrition avoiding the gut completely, rather getting nutrition directly into the cardiovascular system.

In the cases relatively recently in the news, discussion has revolved around enteral feeding, via one of the various tube feeding options. Presumably in such patients partial or total parenteral nutrition would only be considered if adequate nutrition can not be maintained by these methods, especially as we can not currently say that intestinal failure requiring some level of parenteral nutrition never occurs in very very severe ME/CFS.

The article says:

The authors seem to be making unproven assertions about the underlying disease process in ME/CFS and from that implying parenteral nutrition would never be appropriate for any one with ME/CFS. We lack relevant research and currently the main problems we see are arising from clinicians refusing to treat the feeding problems involved in severe ME/CFS as anything other than being psychogenic based on their unevidenced personal beliefs.

To me it seems that common sense should dictate, lacking any evidence based rehabilitative treatments, that if adequate nutrition can not be maintained orally alternatives should be considered, but also subsequently, if nutrition can not be maintained under via the various available enteral tube feeding options, then parenteral nutrition is the only logical solution. To reject that when we do not understand the underlying disease processes is to place the clinician’s personal beliefs above the survival of their patient.

Having said that I expect that for the majority of those few very severe ME/CFS patients requiring alternatives to oral feeding only a very small percentage will prove to be in need of parenteral options. Obviously parenteral nutrition should not be the first option but on our current knowledge nor should it be totally ruled as a last option if adequate nutrition can not be maintained by any other means.

 

Interesting to see that these people are arguing in public the case that I was arguing against in my recent piece in Qeios. And they make exactly the mistake I was criticising - basing policy on theory rather than evidence of keeping people alive.

They obviously have no understanding either of the biomedical or 'biopsychosocial' side with the emphasis on 'hEDS' which is an irrelevance. It is concerning that a 'position paper' should be put out. Maybe these are the nutty 'gut-brain axis' people who are the equivalent to Jon Stone's FND people.

Their case, as people have already said, above, seems non sequitur in that everyone agrees that parenteral nutrition is a policy of last resort. But if you are at the last resort you don't not treat because of some unevidenced position statement.

 

Precisely. I have been followed by a nutrition department at the hospital that specializes in eating disorders for severe malnourishment / weight loss secondary to my gastroparesis, and while they put me on a nasojejunal tube early on with which I maintained but failed to gain weight due to poor tolerance, they never spoke about parenteral nutrition until it was put on the table as a last resort if my surgery (G-POEM) did not work (which, thankfully, it did). The focus never was on my gastroparesis per se or ME/CFS but always on my nutritional status.