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

I’ve had a Quick Look back and found these two quotes about “TPN and Sectioning” It does seem that Dr Roy is the source of this idea, so will be interesting tomorrow to see why he thought it so relevant

 

I think you can have sparkling but maybe don’t try it! I’d suggest a bottle of iced latte for when you’re sent out for a break, if there’s a shop or machine.

 

If only there were even a single negating example — a disease like, I dunno, hypokalaemic periodic paralysis that probably gets presented every year or two at grand rounds by a first year medical registrar.

Home TPN is often given overnight and the patient may be able to eat a bit during the day. One NHS guidance example from a quick Google is here. A scenario might be advanced cystic fibrosis where the patient doesn't have the capacity to simultaneously eat and breathe during the day sufficient to maintain input. So overnight feeding would supplement this: by tube if the gut is working, PN if pancreas/gut is failing.

Once the tube is transpyloric, ie beyond the gastric outlet and round the duodenum, there is reduced likelihood of food/fluid passing retrograde to the stomach where it might be aspirated with gastro-oesophageal reflux. The risk is not nil, but it's also not nil if patients are sitting at 90 degrees - it's entirely possible to reflux and aspirate in that situation, though less likely. But all of this is moot when the alternative outcome is certain death from starvation as you say. We have patients that we know aspirate constantly, they're still fed and we deal with the lung consequences as best as possible. Often chronic aspiration causes things like bronchiectasis, but surprisingly the number of acute pneumonias seems relatively low, though treated with antibiotics when it occurs; and even the chronic situation seems surprisingly tolerable for many years. (That scenario might be severe and progressive neurodevelopmental disorder with very limited life expectancy.)

The vascular system is not comprised of tubes of fixed length and diameter. Eg The cerebral hemodynamics of normotensive hypovolemia during lower-body negative pressure (1992, Journal of Neurosurgery) —

Exactly.

 

Reading this makes me wonder why, if doctors are capable of understanding that very sick patients are unable to tolerate light and sound, the simple argument isn't made that people with severe ME are unable to tolerate being propped up for feeding.

No one needs to explain sensory intolerance, so why do they have to come up with a theory for positional intolerance? As soon as they do, other doctors can (and will) argue over it.

 

Drs seem great at refuting suggestions for treatment, but clueless at resolving medical problems.

 

I think a couple of our members are doing the Lord's good science's work over on

Thank you

 

I think a lot of medical/nursing information is lacking which I hope the physicians will supply. The MDT (which I presume has a dietician) said 1400-1700kcal/day was adequate nutrition. I am not a dietician but this does not seem adequate for weight gain. Was this via a NG tube? From what I read she was not discharged with a NG tube, so why didn't they consider the NJ tube as their next option? Maybe they will give their reason tomorrow, but then not to offer TPN seems a bit strange. How did they think she was going to gain weight? Her poor mother was only able to dribble sugared water into her mouth and her GP had clearly stated, repeatedly, she had done everything she could for her in the community and she needed specialist, inpatient care to gain weight and then to maintain the weight enough to be discharged back into the community.

The rule about sectioning for TPN is interesting. As a psychiatrist, I will try to explain why they might have such a rule (even though it does not seem applicable for this case). To section a person under the Mental Health Act, put simply and in the briefest of ways - Firstly, the person needs to have a clear history, from multiple informants, as well as symptoms on mental status examination of a Mental Disorder as defined by government legislation.

Secondly, this mental disorder, directly causes a serious risk to their health (i.e. potentially causing death). And/Or the person lacks competence to understand the severity of the risk to their health (due to the effects of a mental disorder) for not having psychiatric or medical treatment. (usually this is due to delusions or cognitive impairment). The person would then come under the care of the Responsible Clinician (a Consultant Psychiatrist or Psychiatric Registrar) whilst the Physician oversees the medical care (which includes nursing and other health professionals in the MDT eg dietician, physiotherapist etc)

Usually the MHA process is started when the patient does not consent to life-saving medical treatment, or becomes resistive to medical and nursing care (even if they do consent to the care) eg. pulls out IV canulas, seriously interferes with the sterile dressing over the canula (increasing the risk of infection of the IV site which can then progress into the bloodstream), seriously abuses staff or seriously interrupts the care of other patients or runs off from the ward etc.

The sectioning allows for the administration of psychiatric medication to calm the patient (in doses authorised by the psychiatrist and not routinely given on a medical ward by a medical doctor) so the Medical team can give medical and nursing care. Also, if required, the additional provision of "specialling", this is when a Psychiatric nurse is present in the room to monitor the medical treatment and mental state of the patient, keep the patient calm with distraction etc and be ready to call for additional psychiatric support if the patient becomes very distressed. Sometimes, the psychiatric nurse will sit within arms length, to prevent the patient from removing the canula etc (by force if required and this is known as human restraint). Some countries may also authorise the use of mechanical constraints when all other methods have failed. (I do apologise and appreciate many readers may find this very confronting information, but unfortunately all of these psychiatric treatments are used in exceptional circumstances if medication does not calm the patient and life-saving treatment needs to be administered).

With respect to a previous comment, on this thread, about needing to be sectioned to have ECT: One does not need to be sectioned under the MHA to have ECT. (in NZ anyhow, and I doubt it is different in the UK). Many people with a severe Major Depressive Episode voluntarily have ECT. Many people who have responded to inpatient ECT go on to have voluntary outpatient ECT, even a maintenance dose of ECT (eg every three months) as this is the only treatment that works for their mental health disorder.

 

That would make sense but the fact is that I was told that for my wife to have ECT she would need to be sectioned, despite the fact that she was happy to have the ECT. This was explained by a very intelligent and communicative psychiatrist and confirmed by the second assessor. I wonder if it was necessary because it was considered that she was not competent to consent to a procedure with long term side effects. That was certainly the case and she has had long term side effects on memory, if mild. Her thinking was seriously deranged at the time, with major paranoia and delusions of broadcasting and there was no doubt that she was not competent to give informed consent. (I don't remember but I have a feeling this is what was explained to me.)

So I guess my previous interpretation was a bit off target in that this was a logical and rule-based psychiatric procedure rather than a means to get round an illogical rule in this case.

That of course raises the question as to whether someone with severe ME/CFS would be competent to consent to a feeding procedure with major risks. As far as I can see they would be competent, so sectioning would not be relevant.

It now looks to me fairly certain that there is no rule to get round for ME/CFS either - it is just that it would be unusual to use TPN with a functioning gut without needing sectioning, but for reasons entirely irrelevant to the case.

 

Huh? There were several prominent cases with a fatal outcome from 20+ years ago. None of this is new. The only thing that’s new is that families are utilising social media to push back against BPS witchcraft in NHS hospitals instead of suffering in silence.

 

This to me is the key point. It is what I tried to argue in my Qeios piece. Dr Weir actually has no evidence for cerebral hypoperfusion actually being a problem in ME/CFS. It would be much better if he simply said that people with me/CFS cannot tolerate sitting up - for reasons unknown. Then you would not get this terrible arguing between health care professionals that leaves the patient without help.

 

Dr Weir's 10-15 yrs may have been a rough indicator, not so far from 20, but I agree.
I also think it is unhelpful to throw in speculation about 'evolution of a disease process'. It is hard to see what that could possibly mean other than spread of a mutating virus, and nobody I hope believes that we have any indications that ME/CFS in the UK is due to that.

 

I find this troubling, @Valerie Eliot Smith .

The first thing that comes to mind is that this inquest is supposed to be a fact finding exercise, not a defence of a legal client accused of some offence. In that context nobody has any business trying to manipulate the words of witnesses in order to pre-empt criticism of a potential defendant in a way that may be unjust in terms of the interests of the victim in the case and the community at large.

I would actually challenge the concept that a lawyer has a duty of this sort anyway. It is a duty that the profession has imposed on itself for its own convenience, despite it being patently at odds with the cause of justice, which is what lawyers are supposed to help us with. It has given us the Post Office fiasco, which as far as I can see is entirely the fault of lawyers who were prepared to bury evidence and even, it seems, advised, burying evidence.

The human duty of everyone in this inquest is to find out why things went so wrong. Not to take sides.

 

Sadly, I don't see that happening or getting anywhere if tried. Again, I see an asymmetry in these proceedings, inevitably on the side of the establishment. Dr Weir will not have a legal representative I guess. The family may well do, but legal representatives often do not get the scientific arguments quite right - as evidenced by the representative for the hospital.

I have been in a number of medical trials and although I have been consistently impressed by the ability of solicitors preparing cases to analyse problems with great insight, when it comes to the court barristers often read from a brief without really knowing the necessary details.

Maybe I am being pessimistic and the hospital people will be adequately interrogated.

 

Thank you, it’s frustrating not to be able to plan for when to listen but so far I have managed to do most of it. I had to leave early yesterday so didn’t hear who was on today. So that’s really helpful - thanks again

 

@Jonathan Edwards, Many people admitted to hospital with severe Major Depression (especially if they have psychosis or severe cognitive impairment) are sectionable under the Mental Health Act due to lack of competency (and other reasons) but if the person is agreeable to be admitted voluntarily, we always opt for psychiatric care in the least restrictive environment, which includes the legal means of sectioning. We always have the option to section them when they are an inpatient if their mental state deteriorates, medication refused, request to leave etc so detention and compulsory psychiatric treatment under the MHA is required. People may respond to medication and psychiatric care quite quickly and become competent enough to consent to ECT as a voluntary inpatient.

There are several reasons and differing presentations of a severe Major Depressive Episode eg, they are not psychotic or significantly cognitively impaired but instead have significant suicidality. The onus is on the psychiatrist to prove lack of competence by history and examination as all people are assumed competent until we can legally prove they are not.

So some of these people are able to understand the reasons for ECT (ECT is usually not offered until there is inadequate response to several medication trials) and the likelihood of side effects and the psychiatrist thinks the person is able to undergo the anaesthetic work up and the ECT procedure without undue distress. ECT is not given when the patient is distressed. It would not be safe for them or staff.

Not all people get long term memory loss, that is usually from bilateral ECT performed for various reasons over long periods, compared to more readily used unilateral ECT). It looks like the treating psychiatrist sought a Second Psychiatric Opinion (a legal requirement if you intend to give ECT involuntarily) because of your wife's lack of competency.

But yes, it really appears that medical team have used "rules" that appear to be more relevant for people with severe psychiatric disorders. I am not sure if they questioned these rules and how they decided they applied to a person with severe ME. I don't know if Consultation Liaison Psychiatry was consulted when she was an inpatient or if they had any part in this case. It appears some months later a MHA assessment done in the community found no evidence of a mental disorder and so did not need psychiatric intervention.

 

Capacity assessment for ECT has nothing to do with whether you want or don't want the treatment. Some patients are quite placid and agreeable to go along with whatever is being suggested but are deemed not to have capacity because they can't understand the complex information regarding risks and benefits. Others are declining the treatment and may be trying to leave the ward. Both types of cases result in sectioning.

This is the key issue, I think. I understand the consultant had concerns about sepsis. Surely the risk of doing nothing and the resulting risk of death from not eating/drinking (100%) is higher than the risk of sepsis.

 

Missing Millions France share the following French article on their Facebook page

Un hôpital anglais dans le collimateur de la police après la mort d’une patiente atteinte de fatigue chronique
(Google translate - An English hospital in the crosshairs of the police after the death of a patient suffering from chronic fatigue)

see https://www.20minutes.fr/sante/4102...6Px9C4LAVr94h5v7Ds_aem_9I1SFEmg21a3rJaIBGI31g

The post in the Facebook page was

I assume what I have copied was automatically translated into English by Facebook, it is not always obvious when this happens. I assume the use of MS instead of ME is an error by the auto translate. The misuse of chronic fatigue for ME/CFS obviously doesn’t just occur in English media.

Of particular interest is the mention of similar cases in France. For the Facebook page see https://www.facebook.com/MillionsMissingFrance

[edited last two sentences, discussing translation issues]

 

Why would they need the added indignity of the sectioning if they agree, and the consultants would still be delivering the same treatment after the sectioning?

In the severe ME patient’s situation sectioning is understandably a terrifying prospect.

Thus the requiring of sectioning to access the treatment becomes a major barrier.

Worrying on many accounts.