Maeve Boothby O'Neill - articles about her life, death and inquest

Dr Strain replying to tweets - I actually think it’s “bad form” for him to be discussing Maeve on twitter whilst the inquest is ongoing.
I get that he wants to protect his own reputation, and ppl are @ing him but he’s crossed a line for me by saying she wanted this or that.
 
“She didn’t want to exist like that/there’s no cure” etc these medics keep rolling out

Maeve wanted nutrition in March, April, May, June, July, August and early September. She wanted to live. They didn’t get it together to provide TPN until the end of September by which time she’d spent 6 months being messed around by them, so she preferred to refuse TPN and die at home. It wasn’t her “choice” all the way through to die.
 
Did you sense that the coroner would have picked up on the significance of Dr Warren’s comment (when he is reported to have said that PEG feeding carries risks and that inserting a PEG "would medicalise Maeve to a degree")?

The coroner is not really tipping her hand that much as to what she is or is not thinking. The family is aware of the comment, however. My own interpretation of that remark in context was not that he was saying it would medicalize her as opposed to psychologizing her--in other words, I don't think he was necessarily suggesting the kind of stimulus challenge based on the GET theory. It seemed like he was mainly saying that it would medicalize her in the sense that it might leave her permanently unable to digest normally because various muscles would atrophy permanently. I could be wrong, but that's how I took it.
 
It seemed like he was mainly saying that it would medicalize her in the sense that it might leave her permanently unable to digest normally because various muscles would atrophy permanently. I could be wrong, but that's how I took it.

I am pretty certain that 'medicalise' in this context means to give credence to biomedical explanations and management approaches for an illness. That is the only UK medical usage I am aware of in this context.
 
“She didn’t want to exist like that/there’s no cure” etc these medics keep rolling out

Maeve wanted nutrition in March, April, May, June, July, August and early September. She wanted to live. They didn’t get it together to provide TPN until the end of September by which time she’d spent 6 months being messed around by them, so she preferred to refuse TPN and die at home. It wasn’t her “choice” all the way through to die.

I think that the Coroner will be looking very hard at this issue with a view to identifying whether there are any missed opportunities for providing Maeve with the nutrition she wanted and needed to keep her alive; and if so the reasons which contributed to those opportunities being missed and what actions might be needed to address such omissions in future.

I am too far away from these proceedings to have access to all the information before the Coroner, but it is interesting to note the evidence she has asked witnesses to read out from the written record and the direction of her own questions.
 
I am pretty certain that 'medicalise' in this context means to give credence to biomedical explanations and management approaches for an illness. That is the only UK medical usage I am aware of in this context.

That could be. I understand that meaning and it could be what he meant. But it didn't sound like that to me in the context. It sounded like an inartful way of saying that she wouldn't be able to digest normally afterward. ADD: Perhaps it was ambiguous and he meant both at the same time.
 
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Might be good to quote from the RCP guideline as it contrasts with what the doctors have done. The guideline gives the following case example (page 71):
6.5 Nina, a patient with functional GI disorder / psychological illness
Nina, a 23-year-old woman, is admitted with a chest infection. She weighs 38 kg (height 1.72 m, BMI 13 kg/m2 ). She says her weight is always low and she thinks she should weigh no more than 42 kg. She complains of episodic vomiting, abdominal distention/pain and constipation, and has not menstruated for 5 years. General medical and gastrointestinal investigations have not found a cause though she has been noted to be mildly hypermobile (Beighton score 5). It has become apparent that she eats very little. Nina takes analgesics (including opiates) and antiemetics (including cyclizine) at home. She says she sometimes gets confused and has complained of feeling ‘down’. She wants to go home to finish her course of antibiotics. How should she be treated?

[...]

5. Is there a role for a gastrostomy tube in this instance? What needs to be considered when obtaining consent for the procedure (and who should be involved)?
Nutritional support may be needed for a short time (months) to allow Nina to increase her BMI to an agreed safe level (eg 16 kg/m2 ). If oral intake including supplements is inadequate a nasogastric tube may be tried and failing that a nasojejunal tube. Occasionally if the nasal tube becomes frequently displaced a gastrostomy or jejunostomy may be needed to enable the patient’s nutritional needs to be met.

6. Is there a role for parenteral nutrition?
Generally parenteral nutrition is avoided if there is sufficient functioning gut, though in rare circumstances it is given most commonly as a short-term measure to increase the BMI while avoiding the abdominal pain associated with oral/enteral feeding.
So, regardless of the cause and medical condition, they should have stabilised or increased BMI to a safe level using clinically assisted nutrition and hydration, going from NG-tube, NJ-tube, PEG to PEJ or laparascopic jejunostomy. Parenteral nutrition should be avoided but is not out of the question if other options fail.

From all these treatment options, it seems that they only tried a NG-tube which was poorly tolerated?
 
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Dr Praag’s evidence seems really key, hopefully we’ll get a write up later. I’m signing off for a bit.

Exactly. that's why I'm incredibly frustrated. Does anyone on here have any idea what has happened and how to get back in after being locked out for some reason? I can't move around because the coroner sees everything and doesn't want us to move around. It would be very, very helpful if someone would at least respond to me here so I can figure out if there is something I can do.
 
It seemed like he was mainly saying that it would medicalize her in the sense that it might leave her permanently unable to digest normally because various muscles would atrophy permanently
I wonder if there is any evidence of this... Did not see this mentioned as a risk or complication in PEG reviews or long-term follow ups of PEG(-J) placement.

For example:
https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0034-1392806
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9833457/

Is there an expert present at the inquest who can point out errors in the argumentation of the doctors being questioned? Explanations like these sound plausible but may not be evidence-based.
 
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s there an expert present at the inquest who can point out errors in the argumentation of the doctors being questioned? Explanations like these may sound plausible but may not be evidence-based.

It's not clear to me whether the coroner will be vetting all the medical information, or how she will be vetting it. Obviosuly she has asked about some differences of opinion but not all. Are you in the meeting at the moment? Any idea if there's a technical fix to being locked out?
 
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