Just quoting my own post in case this appears out of sequence: one of the important things about this verdict is that it is itself evidence.
Doctors and hospital boards cannot now say they didn't know severe ME can be fatal.
Yes I thought that. The explainer one with the whistleblower Clinician commentary about the policy maker generation - linked again below for convenience - is really quite a powerful point. Qudos to anyone who's complained and AfME for a strong quote too.Surprisingly good articles from The Guardian, perhaps they’re trying to redeem themselves after that awful one by Dr Miller.
I know this isn’t what you mean, but an unnatural cause would be being murdered.In a civilized country that is among the world’s leading economic powers, how can malnourishment be considered as a natural cause of death?
The legal definition is a death that isn't caused by a direct intervention, e.g. a surgery. So a death that happens because nothing was done to prevent it.In a civilized country that is among the world’s leading economic powers, how can malnourishment be considered as a natural cause of death?
I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that failed or was not possible there was the option of TPN. From what I read/hear, it is possible to live many years on TPN if patients are followed up by an expert team.If she couldn’t tolerate NG she wouldn’t have tolerated NJ
Was any expert, a gut-specialist, consulted to check if what Dr. Roy was saying was true or not?I once again took extensive notes if anyone has specific questions.
No. any quotes from today are the Coroner summarising what was given in evidence during the inquiry.I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that failed or was not possible there was the option of TPN. From what I read/hear, it is possible to live many years on TPN if patients are followed up by an expert team.
Was any expert, a gut-specialist, consulted to check if what Dr. Roy was saying was true or not?
Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts.quotes from today are the Coroner summarising what was given in evidence during the inquiry.
I’d guess there were protocols backing up what he said, in the evidence bundle. And the absence of any ME specific protocols.Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts.
From reading guidelines on enteral feeding it is very hard to believe that there were no other options and that nothing more could have been done. All they tried was an NG-tube.
Could be but doubt it. Would be interested in seeing that protocol if it exists. Even the bad guidelines that we discussed here on S4ME and that do not want to medicalise functional problems are not that bad that they would recommend against trying PEG-J or TPN if there is a clear risk of starvation.I’d guess there were protocols backing up what he said, in the evidence bundle. And the absence of any ME specific protocols.
So they did try NJ (from the nose to the gut) and PEG (opening directly through the stomach)? I haven't followed things closely but I thought they only tried a NG tube (from the nose to the stomach).They say her death was inevitable as she couldn’t feed herself and NJ/PEG failed.
Yes.The news articles make it sound like the main problem was that there are no ME specialist clinics and that the doctors did not have experience with ME.
From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise it. I think that explains the strange decision of not exploring artificial feeding options which are recommend by guidelines and used routinely for other health conditions where people aren't left to die of malnutrition.
Yes.Thinking about it. With the “inevitability” of death part, did the coroner just proclaim that some cases of ME can be “terminal”?
They say her death was inevitable as she couldn’t feed herself and NJ/PEG failed.
Do not want to minimise the risk of sepsis but here's for example what a review on long-term TPN says:They say they couldn’t consider TPN as risk of sepsis.
https://onlinelibrary.wiley.com/doi/full/10.1111/apt.12209Home parenteral nutrition delivered by skilled nutrition teams has low incidences of catheter-related complications. Most deaths relate to the underlying disease.
https://www.sciencedirect.com/science/article/pii/S0002916523062901Critical review of the data suggests that, in humans, TPN does not cause mucosal atrophy or increase bacterial translocation. Increased sepsis with TPN can be ascribed to overfeeding; the dangers of TPN-induced complications have been exaggerated. TPN is an equally effective alternative to EN when a risk of malnutrition is present and EN is not tolerated or when gut failure is present.
https://jamanetwork.com/journals/jama/article-abstract/188261Total parenteral nutrition does not influence the overall mortality rate of surgical or critically ill patients. It may reduce the complication rate, especially in malnourished patients, but study results are influenced by patient population, use of lipids, methodological quality, and year of publication.