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

I saw this highlighted by ME Research UK on Facebook:


Trial By Error: Post-Inquest Comments from Sarah Boothby, Maeve’s Mum

https://virology.ws/2024/08/20/trial-by-error-post-inquest-comments-from-sarah-boothby-maeves-mum/

“Again I am obliged to accept adequate funding for biomedical research – that produces verifiable evidence of disease – is the only route to us acquiring enough expertise for enough people to know how to safely manage ME. Maeve knew and understood this.”
 
Jonathan Edwards said:
It happens all the time. I well remember a patient of mine with a spinal lymphoma who had just had surgery - aged about our age - who the nurses put on to 'TLC', which included not giving drinks or keeping her mouth clean such that on my ward round she was severely dehydrate. I said to the sister I had not recommended this and she answered that since the patient had cancer that was their policy. I pointed out that the cancer was entirely curable, at which point sister went quiet.

Some days later the lady was sitting up in bed on Christmas Day and Father Christmas came around - a short tubby bearded man full of laughs. It was her husband giving out the presents. I continued to look after her and her arthritis for another ten years or so.

In Holland it is routine for older patients they tell me. Clearly it caries but Some of the comments at the recent inquest suggest that it was thought to be OK to let Maeve die because her ME/CFS was so bad that she did not have long to live anyway. That should never have been expressed.
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Yes.
It’s amazing what members of the medical profession will say out loud.
 
Trish said:
But surely that doesn't happen in other diseases.
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Anecdotal but a family member of mine died of dehydration/starvation caused by another disease and at no point did any medical doctor offer any suggestions regarding nutritional support, or any help of any kind really. I used to think it was just those of us with ME/CFS who got this sort of treatment.
 
Jonathan Edwards said:
I think that is a dodgy generalisation, even if there are some psychiatric nurses like that. In the two units my wife was admitted to none were like that. In the first the nurses seemed just to ignore the patients. In the second they were attentive and helpful. One particular nurse acted with complete understanding and sympathy, despite the fact that my wife was paranoid and irrational.

My experience with other health care episodes, including my brother in law's stroke, is that medical nurses are far worse.
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These are inappropriate generalisations based on being a visitor/tourist in two units. The reality is that if you have a "functional disorder" you will have your window blinds opened (which is difficult to cope with when you have light sensitivity issues), asked to attend the dining room for meals where there are loud noises and conversation (which is sensory onslaught for those with sound sensitivity), have constant nursing checks depending on your level of risk etc. Even during the night you will have a flashlight pointed at your face by a nurse to check if you're alive. It's really not a good environment for people with ME/CFS. A different model of inpatient care is needed for those who need nutritional support that isn't predicated on these notions of graded exposure and behavioural activation.
 
Sid said:
The reality is that if you have a "functional disorder" you will have your window blinds opened
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Absolutely, but the claim seemed to be the inappropriate generalisation that psychiatric nurses behave terribly to all patients.

Of course we want to root out the 'functional' paradigm. My point was that the problem was not that of being treated in a psychiatric unit but being treated in an inappropriate way in such a unit based on beliefs in approaches that have no evidence base.

I am trying to make the point that it may be more productive to move from the insistence that we know that ME/CFS is not psychiatric, which may be a well founded belief but actually has no evidence base, so is a weak argument, to emphasis on the point I put at the end of my Qeios article. The least we can say is that if there is any psychological component nobody has any understanding of what it is or how to treat it. In other words that those who have promoted a psychological approach have shown themselves to be totally incompetent. We need to stick to what we know keeps people alive.

When people have less common types of health problem they quite often turn out to be managed best on a 'wrong' ward. My wife actually did best when starving on a surgical ward run by an intelligent surgeon who she happened to have known as a trainee. He had to wangle it with admin but it worked. Her mental care was arranged by the community psychiatrist who could see the advantage of the arrangement.

The focus needs to be on keeping people alive with appropriate care rather than the turf wars that seem to dominate all these cases.
 
Jonathan Edwards said:
It happens all the time. I well remember a patient of mine with a spinal lymphoma who had just had surgery - aged about our age - who the nurses put on to 'TLC', which included not giving drinks or keeping her mouth clean such that on my ward round she was severely dehydrate. I said to the sister I had not recommended this and she answered that since the patient had cancer that was their policy. I pointed out that the cancer was entirely curable, at which point sister went quiet.

Some days later the lady was sitting up in bed on Christmas Day and Father Christmas came around - a short tubby bearded man full of laughs. It was her husband giving out the presents. I continued to look after her and her arthritis for another ten years or so.

In Holland it is routine for older patients they tell me. Clearly it caries but Some of the comments at the recent inquest suggest that it was thought to be OK to let Maeve die because her ME/CFS was so bad that she did not have long to live anyway. That should never have been expressed.
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TLC? That name is quite the sick joke. The opposite of tender, loving care.

The internet suggests that in a nursing context TLC should stand for "Timely: Proactive rather than reactive approach to avoid prolonged unnecessary suffering; Team oriented: Nurses, social workers, trained laypersons, and others involved; Longitudinal: Balance of palliative and curative measures evolves with time; Collaborative: Patients, family members, and providers share decisions".

Possibly helpful concepts like "avoid prolonged unnecessary suffering" and "balance of palliative and curative measures" get abused in an overstretched system so it is not TLC but LTC: Leave To Croak.
 
Trish said:
But surely that doesn't happen in other diseases. No matter how likely someone is to die soon, they should stlll be provided with nutrition and hydration if they want i
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My father was put on the Liverpool Care Pathway (LCP). He had a lot of health problems but his final issue was a stroke which made swallowing and chewing difficult or impossible. He couldn't talk by that stage. It seemed that as soon as hospital staff realised this was the case he had food and water withdrawn. I managed to get to the hospital about two hours before he died. There were sticks with small pink sponges on them in a jug of water to moisten his mouth with. One of the things that upset me was that dad was desperately sucking water out of these sponges, lifting his head off the bed to get at them. When I decided to try and give him some water a nurse appeared and shouted at me. Nobody had told me that the whole point was for my dad to die as soon as possible. From my point of view this was entirely for the hospital's convenience. By the time he died he'd been on the LCP for 2 or 3 days. I've since read that he went fairly quickly compared to some who last for a week. Given that thirst which can't be quenched is torture I think it is a really cruel way to go.

The other thing that I noticed was that when he actually died dad clutched his chest, suggesting to me that he was having a heart attack. Yet his death certificate said he'd died of cerebrovascular accident (aka stroke). I don't think the doctor who certified my father's death actually looked at him. He (the doctor) was an aged old codger himself and he was not seeing living patients any more, he was just seeing the dead ones. I think the fees for certifying death were just a nice adjunct to his pension.

At least when my mother died quite a few years later she had stopped eating and drinking under her own steam. Then she was given what seemed to be a lot of sedative injections throughout her last day - I don't know what they actually consisted of. It almost felt like watching her die had become a spectator sport for the family members who turned up because nobody could say anything to her and get a response. It was horrifying.
 
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Trish said:
According to this article the Liverpool Care Pathway was abolished in 2013, largely it seems because they realised depriving dying people of fluids was cruel.
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I've seen articles that say that the LCP has continued in many places, just under another name :

https://www.bmj.com/content/350/bmj.h555

Unfortunately I don't have a link to the whole article.

What I'm now wondering about is how people in hospital died, say, 40 or 50 years ago. It isn't something that would ever have crossed my mind at the time. I certainly would never have guessed that medical staff would hasten someone's death by depriving them of food and water.
 
Arnie Pye said:
Unfortunately I don't have a link to the whole article.
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Here are a few relevant passages —

The House of Commons Health Committee held an evidence session on 28 January [2015] for its inquiry into end of life care and asked about the pathway, an integrated care tool intended to be used to improve the quality of a person’s last few days of life. However, after a series of media stories claiming that patients were drugged and deprived of fluids in their last weeks of life, and a government commissioned review found that some hospital staff had wrongly interpreted its guidance and had received poor training in its use, the NHS was ordered to stop using it last summer.
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MPs asked whether the pathway was still being used in some form. Adrienne Betteley, end of life care programme lead for the charity Macmillan Cancer Support, said, “There are areas that I know that have . . . tweaked the original document, called it something else, and that’s what they are using. And that is very concerning because it will potentially remain as a tickbox exercise.”
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The committee member Rosie Cooper, Labour MP for West Lancashire, asked, “If you believe that the Liverpool care pathway, by any other design, name, or practice, is going on, how do we know that the abuses, the misunderstandings, and the lack of education aren’t going on under our noses now?” Cheesley said, “Bluntly, we don’t, unless somebody identifies that it is happening or you happen to be one of the brave patients or carers who try to jump up and down and say this is what’s happening.”
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Later in the session the MPs asked Norman Lamb, the health minister for care and support, about the claim that the Liverpool care pathway was still in use under another name. He said, “It shouldn’t be used. It would be wholly wrong for a hospital, for example, just to re-badge their approach or their use of the Liverpool care pathway, call it something else, and carry on as before.”
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Good to see there is precedence for Government banning the NHS from using a harmful practice when they themselves have failed to correct their systemic error. Looking forward to them tackling ME/CFS usefully in the delivery plan and then they should feel free to take on psychosomatic medicine more generally ...

The point made about "brave patients or carers who try to jump up and down" is very relevant to this thread. At great cost to Sarah and Sean.

"re-badge their approach or their use of the Liverpool care pathway, call it something else, and carry on as before". Looking at you FND.
 
I'm wondering what evidence Dr Shenton will give when she responds to the written questions posed to her by the coroner at Maeve's inquest.

What she writes will depend on the questions asked- unless she wishes to introduce her own perspective beyond that requested by the coroner. Will she be allowed to do this?

Do we know what questions the coroner has posed to Dr Shenton?

Dr Shenton presumably has views on how her patient was treated/ not treated in the hospital, and on Dr Weir's advice on treatment. Will she be asked to or choose to comment on this. Sarah ( I think it was Sarah) has already said what Dr Shenton said to her about Maeve's treatment.

edit: Apologies. I am clinging to straws in an effort to be hopeful about 27th Sept. @MrMagoo has reminded me that the Coroner covered Dr Shenton's written replies on the Fri afternoon.
 
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Trish said:
I'm sorry you and your family suffered that treatment, Arnie Pye.
According to this article the Liverpool Care Pathway was abolished in 2013, largely it seems because they realised depriving dying people of fluids was cruel.
https://www.theguardian.com/society/2013/jul/15/liverpool-care-pathway-independent-review
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I watched my Grandpa die just last month, in exactly the way the Liverpool pathway is described. This is in a big well known hospital here. His food was withdrawn first, even though he was at the time still able to swallow/eat small amounts. He was drinking a bottle of fortisip at a time, although he was unwell, but still they withdrew it and put him on nil by mouth. Later, as he deteriorated for several days without any food (and we were continually asking the nurses / doctors if they would actually feed him some other way), they kept fobbing us off and told us he was “very old”, and gave us the sponge with sticks. And then they withdrew water IV too, and we watched him waste away to a living skeleton state in front of our eyes.

In the end all of us - his family - knew that it was not his cancer that killed him, but starvation and dehydration that killed him quickly. At the time nothing was explained to us and they never told us what they were doing or why. So yes hospitals still do this to some patients. :( :( it is the worst thing I have ever witnessed.
 
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Binkie4 said:
I'm wondering what evidence Dr Shenton will give when she responds to the written questions posed to her by the coroner at Maeve's inquest.

What she writes will depend on the questions asked- unless she wishes to introduce her own perspective beyond that requested by the coroner. Will she be allowed to do this?

Do we know what questions the coroner has posed to Dr Shenton?

Dr Shenton presumably has views on how her patient was treated/ not treated in the hospital, and on Dr Weir's advice on treatment. Will she be asked to or choose to comment on this. Sarah ( I think it was Sarah) has already said what Dr Shenton said to her about Maeve's treatment.
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I’m confused - I thought there was already something from her? Faint memory of discussion of how she corrected the line ‘worst I’ve ever seen a patient treated’ like

is there more to come from this?
 
lunarainbows said:
I watched my Grandpa die just last month, in exactly the way the Liverpool pathway is described. This is in a big well known hospital here. His food was withdrawn first, even though he was at the time still able to swallow/eat small amounts. He was drinking a bottle of fortisip at a time, although he was unwell, but still they withdrew it and put him on nil by mouth. Later, as he deteriorated for several days without any food (and we were continually asking the nurses / doctors if they would actually feed him some other way), they kept fobbing us off and told us he was “very old”, and gave us the sponge with sticks. And then they withdrew water IV too, and we watched him waste away to a living skeleton state in front of our eyes.

In the end all of us - his family - knew that it was not his cancer that killed him, but starvation and dehydration that killed him quickly. At the time nothing was explained to us and they never told us what they were doing or why. So yes hospitals still do this to some patients. :( :( it is the worst thing I have ever witnessed.
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I’m so sorry, that’s awful :hug:
 
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