Monday and Tuesday this week Assistant Coroner for Swansea, Aled Gruffydd, heard evidence in the inquest touching on the death of Shane West. He concluded the inquest yesterday, and stated his intention to issue a Prevention of Future Death Report to reflect what the court had heard over the past few days.

I haven’t had the opportunity to speak with Shane’s family members, so I wasn’t live tweeting his inquest. Unfortunately I was also unable to attend the first day, but was granted remote access to attend online to hear Tuesday’s evidence (the expert and two statements read onto the record) and for the Coroner’s summing up and conclusion yesterday. So this post is a very partial account of some of the evidence heard by the court, and my attempts to share what the coroner found, and the implications for others.

Shane

Shane was 24 when he died, on 17 August 2018, yes you read that right, almost 5 years ago. He was clearly much loved by his family, who represented themselves in court. Shane died in Morriston Hospital, and Swansea Bay University Health Board were represented by Rhodri Jones of St John’s Chambers.

The court heard that Shane had Sotos Syndrome, learning disabilities and scoliosis, although he’d undergone surgery to correct the curvature of his spine in 2010 which had been successful. The coroner in his summing up referred to his GP, one of the witnesses on Monday, describing Shane as “a lovely boy”.

Shane’s family’s questions and concerns

The coroner told the court that Shane’s family had concerns about his chronic constipation and questioned whether it was treated quickly enough.

The coroner said that Shane’s family were of the view that if his constipation had been treated earlier, he would not have passed away. We heard that the initial report of the court expert, Prof Colin Johnson, suggested that Shane had died from heart failure. Shane’s family wanted to know whether that had been considered in his treatment.

The coroner said that another area Shane’s family had questions about was whether he ought to have undergone surgery for his constipation sooner, on the basis that when it happened it was too late to save Shane. The coroner explained that the evidence heard through the inquest process had shed light on this and shown that the purpose of the surgical intervention that Shane underwent was not to treat his constipation, but to decompress his abdomen sufficiently to allow for mechanical ventilation. He said he’d therefore change the question to whether surgery should have happened to treat Shane’s constipation.

The coroner then summed up what the court had heard.

Shane’s care in the community

Shane was seen by his GP in April 2018, but constipation was not diagnosed until June that year. By July Shane was faecally loaded, which means he was suffering from faecal impaction. The coroner said that the court had heard that Shane was a people pleaser and had a tendency to tell people what they wanted to hear. The implication of this was that consequently Shane may not have been able to communicate his situation accurately to medical professionals.

Shane had been seen by his GP on 28 June 2018. The GP was aware of Shane’s medical history and had been seen by that GP since April 2018. Shane’s family had first made contact with the GP surgery after Shane developed swelling if his left leg. The first diagnosis considered with a deep vein thrombosis, but this was excluded by an ultrasound scan. The second diagnosis considered was a fracture of the leg, but that was excluded following an xray.

It was identified that there was a mass in Shane’s abdomen and there was some consideration given to Shane being admitted to hospital for further investigations. However, it was felt since the symptoms had “come on gradually” and Shane was “not keen on going into hospital”, hospital was decided against. A chest xray taken on 28 June 2018 (??) found the mass to be faeces, and also showed that it was pushing into Shane’s chest cavity.

Shane was started on laxatives.

An ultrasound scan of Shane’s abdomen was unsuccessful. It did not reveal anything as excessive bowel gas was obstructing the view of the organs. Dr Thomas (Shane’s GP) referred him to Dr Lennox at Neath Port Talbot Hospital, and started a second laxative, bisacodyl. Dr Lennox recommended conservative treatment of constipation, which was already happening by the administration of laxatives.

The coroner also told the court that Shane’s GP, Dr Thomas also stopped another medication prescribed to Shane, for bladder instability and urinary incontinence, as a possible side effect of it was constipation.

[It is not unusual to hear of people with a learning disability being prescribed one medication, to address something which in itself is often caused by constipation (such as urinary incontinence), even if in turn the medication prescribed runs the risk of further constipation. How many 24 year olds have to live with constipation and urinary incontinence?]

Shane’s care in hospital

Shane was admitted to Morriston Hospital 5 days later, on 31 July 2018. He attended after suffering abdominal swelling caused by chronic constipation, plus swelling in his left leg and shortness of breath.

He was initially under the care of Mr Manson, a general surgeon, for the first two days of his emergency admission, on 31 July and 1 August 2018. He said that he had a clear recollection of his involvement with Shane. He said Shane had Sotos Syndrome, learning difficulties, he’d had extensive surgery for spinal abnormalities, and he had an obvious chest wall deformity and cardiac malformation, but his reason for admission was gross abdominal distension, associated with swelling in his legs.

Mr Manson said his initial concern on Shane’s first admission was peritonitis, however he’d gone through previous chest x-rays and radiology and four years earlier Shane had similar appearances, which were consistent two months earlier, so it was clear he did not have peritonitis. He told the court that management of chronic impaction and faecal loading was instigated soon after Shane’s admission.

Shane’s care was transferred to Prof Harris the following day, 1 August 2018. It was felt that his expertise, he’s a consultant colorectal surgeon, was more in keeping with Shane’s medical issues, as his colon was full and was pushing his diaphragm upwards.

Professor Harris was of the view that Shane’s constipation had “been there for some time” and he believed that was longer than the previous 3 months, “possibly as far back as 2014”. He understood swelling to have been a constant feature of Shane’s presentation, becoming more acute before his admission. Prof Harris had discussed Shane’s scoliosis but he “recognised the main cause of distension was constipation”.

The coroner returned to the evidence of Mr Manson, who instigated a treatment plan for Shane after reviewing his xrays. He suggested the introduction of colonic irrigations and enemas, although the court heard that treatment was not started until 8 August 2018, as Shane needed to gain trust in the staff performing them.

To that end the court heard evidence of Paula Phillips, a community learning disability nurse, who the coroner said “oversaw and coordinated support given to Shane in hospital”. She was normally community based, but she went to the hospital on hearing Shane had been admitted. She told the court how the team used visual cues and checklists to support Shane and explain the treatment required. The coroner said that there had been “no issues with compliance” by Shane after his trust had been gained, and nurses administered enemas and colonic irrigation anally.

Mr Manson’s statement, read to the court on Tuesday, said that despite Shane no longer being under his care, he had seen him several times on the ward. The first occasion of which was the day after his admission. Mr Manson said that Shane “looked very much better” and his abdominal distension had already significantly improved. He commented that he was playing a game on his laptop in bed and expressed that he felt better and did not want to undergo surgery. He said he’d read Professor Harris’s “lengthy and high quality statement of this case” and that he respected his opinion.

The coroner said that Prof Harris reviewed Shane between 1 and 13 August before going on holiday, although there was some confusion about dates as he appeared to have made a note on 15 August after seeing Shane. His evidence was that whilst Shane’s abdomen was distended, it was becoming softer, and he said that at no point did he recall Shane being in pain. He said that there was hard impacted stool in both the left and right colon, and he reasoned that by removing what was in the left colon by irrigation it would give room for stool in the right colon to move around and be passed. Prof Harris suggested that irrigation was successful, however he was not present when Shane deteriorated.

The coroner then outlined the evidence of Dr Dallison who’d been an intensive care consultant since 2010. The coroner said that the first he knew of Shane was when he was asked to review a patient in difficulties with a distended abdomen which was causing cardio vascular compromise. He was asked to consider admitting Shane into the intensive care unit. He noted that Shane’s carbon dioxide levels were significant, while his oxygen levels were low. Oxygen therapy was given, however his abdomen needed to be compressed before mechanical ventilation would be successful.

The coroner said that Shane underwent colectomy surgery, but before this could take place he suffered a cardiac arrest and underwent 5 rounds of cardiopulmonary resuscitation. Dr Dallison attended and said “he hadn’t seen such a distended abdomen in his whole career”. Dr Dallison acknowledged that while the increased pressure of mechanical ventilation would cause harm in the long term, it was needed in the short term.

He said that there was so much pressure in Shane’s abdomen that his bowel came out when the incision was made. Shane underwent colectomy surgery and ileostomy formation. There was some improvement in his condition, but it was not sustained. As his condition deteriorated, he later developed a pneumothorax (collapsed lung) which was treated in the intensive care unit. He had intercostal drains (chest drains placed to help drain excess air and fluid) inserted on both sides.

The coroner said that Dr Gorst took over Shane’s care in the intensive care unit on 17 August. He was undertaking a handover when he learnt about Shane, and he prioritised Shane’s case, passing his handover duties to a colleague.

Dr Gorst noted Shane’s pneumothorax, which he said can be survivable, but Shane’s overall condition meant that for him it was not.

What caused Shane’s death?

Dr Gorst gave Shane’s cause of death as: 1a multiple organ failure, as a result of 1b cardiorespiratory arrest and pulmonary aspiration due to 1c severe faecal impaction (colectomy operated 16 August 2018). In Part 2 Dr Gorst listed Sotos Syndrome and Scoliosis, as linked but not directly causative conditions. This cause of death was accepted by the coroner at the time, and consequently no post mortem took place.

Following the Health Board’s serious incident review, the coroner said that “a question mark was raised in respect of cause of death”. He said that the general consensus now of Dr Gorst, the reporting doctor, and the treating surgeons, is that cause of death should not have been offered and a post mortem should have been carried out.

The coroner explained that the initial position of the intensive care consultants was that Shane’s death had an abdominal cause, that Professor Harris believed the most likely cause of death to be a pulmonary embolism, and that the court expert, Prof Colin Johnson, believed heart failure to be the cause of Shane’s death.

The coroner stated that “as evidence progressed” there had been “some alignment”, with Professor Harris remaining of the view that the most likely cause of death was pulmonary embolism, but Professor Johnson had aligned with the intensivists. He had come to understand that the distension and pressure in Shane’s abdomen was variable, and that it was feasible that his stomach was soft and tender one day and grossly distended and tense on another.

The coroner said that Dr Dallison, one of the intensive care doctors “could not think of any cause other than faecal impaction” causing the distension. Dr Gorst, another intensive care doctor, put forward the view that laxative treatment causes excessive gas and fluid, and that may be one theory for why Shane’s condition was variable, with his abdomen becoming distended after it was previously considered soft and tender.

The coroner recapped Dr Gorst’s explanation that Laxido is an osmotic laxative, drawing fluid into the bowel, thus making faeces more liquid, and that it was this fluid that was responsible for the distension. He said that Prof Harris had been unable to find a link between excessive gas from Laxido in the literature. The court expert, Prof Johnson, considered Dr Gorst’s theory and was “persuaded by it” and agreed it was not likely to be excessive gas, but excessive fluid.

The coroner said that it was accepted that Shane’s stomach was soft on 15 August 2018, but that on 16 August 2018 his colon filled with fluid as a result of laxative treatment, which in turn pressed against his lungs. Prof Johnson had said that Shane’s distension was variable, and as such was confusing. He explained, with reference to the inner tube of a bike tyre, that if the bowel fills with air it can compress and adapt to the space it occupies but if it is filled with liquid, it can not compress and therefore it needs to stretch the colon to cope with the increased volume of fluid in the intestine (which in turn then impinged on Shane’s lung function).

The coroner said that Prof Johnson had told the court that when someone has long standing constipation it causes the bowel to lose muscle mass, and become floppy, so if the bowel is expanding, and it does not have sufficient muscle mass to pass stool down and out of the bowel, that it will push it up and against the lungs. Professor Johnson told the court on Day 2 of Shane’s inquest that he now believed his cause of death to be an abdominal matter.

CJ: Like Dr Gorst, I’ve given this matter a lot of thought, and I think what has become clear to me, was that, the amount of distension was variable, and this was something that I initially found somewhat confusing. On the 16^th for example in the morning, when examined by Prof Harris, the abdomen was less distended and soft, in the evening it was tense and extremely distended.

C: Yes

CJ: In my surgical practice, the usual course of a raised intra-abdominal pressure, and we’ve heard of abdominal compartment syndrome, is the accumulation of fluid, either free within the abdomen, or swelling of internal organs and I was struggling to put together this variable pattern of distension with that kind of picture

C: Yes

CJ: However, I came to realise that the effect of the bowel distension within the abdomen, was not constant. If the bowel was filling with air, then gas is compressible, so it can adapt more to the space that is occupied. If the bowel is filling with liquid, that is not compressible, so the additional liquid pushes outwards and if you think of the bowel as the inner tube of a bicycle tyre

C: Hmmm

CJ: Then you can pump in more air and it makes the tyre very rigid, but if the inner tube were filled with liquid, water rather than air, it would not be possible to pump in any more. You can’t add volume by adding liquid, without increasing the, I’m not explaining that very well. If you add air to a confined space, pressure goes up but the space doesn’t need to expand, if you add liquid the increased pressure has to stretch to the surroundings.

C: Yes, once it’s full, it’s full

CJ: Yes, and so whereas I was previously rather sceptical of the concept a prolonged or steady raised intrabdominal pressure had been present, I can and I do accept, the concept that intra-abdominal pressure was probably varying depending on the amount of gas and liquid in the colon, and it has to be remembered that the colon in long standing severe constipation, loses muscular activity, so the bowel becomes floppy, and is unable to push the contents forward as it normally would. And so when the bowel is filled up with fluid, it may sit there rather than being passed through and expelled.

What is the effect of these variable amounts of fluid and air within the bowel? Well if the bowel is expanding because its filling with fluid, that will push against the abdominal wall and also the diaphragm. The abdominal wall distension becomes obvious, pushing up against diaphragm presses against the lungs, if we understand that the rising pressure is a peak, and there are rises and troughs where pressure falls, I think it is an attractive hypothesis that on 16 August, the rise in pressure exceeded the capacity of the lungs to respond, and to continue transferring adequate amount of oxygen in and carbon dioxide out.

So, that has put together some of the pieces of the jigsaw, and made it clearer to me, from hearing the evidence of yesterday, and the reflections I’d made previously.

The coroner said that Prof Johnson’s concise summary of Monday’s evidence allowed him to skip a little but he then asked about his initial conclusion.

C: I will ask therefore, in your original report you suggested perhaps the cause of Shane’s deterioration wasn’t an abdominal cause, more possibly linked to his heart, in particular the Ebstein Anomaly. Is it the case therefore following the evidence of yesterday, now your view is this was an abdominal matter rather than a heart issue?

CJ: Yes, and I repeat the apology I made in my addendum report, that I did stray beyond the boundaries of my expertise. Which reflects, the fact, I couldn’t at that time see a mechanism that linked the abdominal situation with the events. I speculated about tricuspid regurgitation, because although an echocardiogram was obtained on 17 August, that did not mention tricuspid regurgitation, it was not clear whether that had been excluded. Dr Gorst stated yesterday it was excluded, so these cardiac possibilities which I considered, turn out to be not relevant, and having considered the effect of the bowel filling with fluid, which was reinforced by the discussion around the amount of laxative that had been given, I think that does become a logical and evidence based sequence of events.

Returning to the coroner’s summing up and conclusion, he said that he accepted that there was still a difference of opinion, and without a post mortem it’s not possible to be 100% certain, however he thought it was “more likely than not cause of death was abdominal”. He said he felt that there was insufficient evidence for pulmonary aspiration to remain, and that the colectomy Shane underwent on 16 August was in response to his deterioration, not the cause of it, so he’d remove that from the cause of death also.

Therefore Shane’s final cause of death is: 1a multiple organ failure, as a result of 1b cardiorespiratory arrest due to 1c abdominal distension caused by faecal impaction. In Part 2 the coroner listed Sotos Syndrome and Scoliosis.

He said that heart failure had been discounted by Prof Johnson in his evidence, so the question of investigation of Shane’s potential heart condition falls away. He then turned to Shane’s care from his GP.

Should earlier treatment by the GP have been administered?

The coroner said that when the GP was first approached in April 2018, Shane had swelling in his left leg. He said that appropriate tests were conducted to exclude obvious causes, and that more obscure causes need to be considered. A diagnosis of constipation was given. Prof Harris on Shane’s admission to hospital said that it was likely that constipation had been present “for a number of years” and that clearing it “could take weeks or months” and as such the coroner said he “did not find the few weeks delay” or the GP’s actions fell below accepted standards.

Should surgical treatment have taken place for Shane’s constipation?

The coroner said that it is very easy to look with the benefit of hindsight and advocate for different treatment options, but he had heard no evidence advocating for surgical intervention to address Shane’s constipation, and he said had it taken place he would have been left with a stoma bag.

I just want to return to the evidence of Mr Manson which was read to the court on Tuesday. His statement included the following sentence:

Please remember that such surgery would inevitably have resulted in a stoma bag, which neither Shane nor his mother, would in all probability, near certainty, have been able to manage.

[Which looks from where I’m sat as bias writ large. Mr Manson appears to have decided that Shane, and his mum, wouldn’t have been able to handle a stoma, and it is unclear from his statement that he explored that option with Shane, his family members, or indeed with the nurses from the Learning Disability Team who were supporting Shane, and the coroner did note that with their support Shane was 100% compliant with his treatment].

Also in his statement Mr Manson said that he couldn’t say how many patients he’d seen with chronic and severe impaction but it was “particularly common in patients with mental or learning disabilities” and that management was “nearly always by conservative measures and surgery was a last resort”. He said that in Shane’s case there was never a convincing or compelling indication for surgery. Mr Manson said that Shane was improving, and that in forty years he’d had over a hundred patients with a similar presentation to Shane but that he could not recall any patient deteriorating in such a way as had occurred in this case. He said the clinical course was extraordinarily unusual.

[Again this is surprising to me, as reporting what happened to Shane feels like an almost carbon copy of what happened to Richard Handley, but I’m sure my perspective is skewed, not least because this is the second inquest relating to constipation in a person with learning disabilities that I’ve reported in recent months].

The coroner continued in his summary by stating that every witness had deemed Shane’s deterioration “as unexpected and unforeseeable”. He said that the surgery Shane underwent was to depress his abdomen, not to treat his constipation, and that surgical intervention was not related to his cause of death.

The coroner concluded “ultimately the decision not to choose surgery to treat constipation was reasonable”, however he wished to consider the overall treatment of Shane’s constipation.

What was the overall treatment of Shane’s constipation in hospital? Was there an overdose of Laxido?

The coroner acknowledged that the hospital teams had gone to great lengths to involve the Learning Disability Team to assist Shane, in understanding his treatment and gain his trust.

The coroner said there had been “some confusion in certain parts of monitoring”. That the notes said Shane had not opened his bowels in two weeks, but “all witnesses point to this was not the case”. However, the coroner flagged that it was hard to see how, or if, the treatment was working in the records.

I’m reminded of the Dimensions’s staff at Sally Lewis’s inquest who said that they’d not been monitoring her bowels to preserve her dignity and/or because they didn’t think they needed to. I’m not really sure how the recording and monitoring of such a life threatening condition as faecal impaction and chronic constipation is taken so lightly.

The coroner said that Professor Harris had indicated there was “such a lot [of faeces] to come out, it would have taken weeks or months to clear fully” and that while treatment wise “things were going in the right direction”, Shane was “far from being cured”. The court also heard that consideration was being given to discharge Shane home.

The coroner recalled that Dr Gorst had questioned the dose of Laxido prescribed to Shane on the 15th August. Shane had been prescribed 8 sachets of Laxido, on top of his regular prescription of 6 sachets, given as three sachets, twice daily.

The court had heard that the maximum number of sachets of Laxido that can be taken in a 24 hour period (according to the BNF) is 8 sachets. So if Shane had been given 8 on top of his existing prescription of 6 sachets, then he would have overdosed on Laxido.

The coroner said that Shane’s drug chart recorded that he was prescribed 8 sachets, in addition to his daily dose of 6 sachets. A note in the nursing record said that they were not happy to give the prescribed dose because it would take him to more than the daily recommended dose. A record later that evening showed the additional doses had been signed for with x4 next to it, which suggested Shane was given 10 sachets on the 15 August [remember Shane’s sudden unexpected and unforeseeable deterioration happened the next day].

The coroner said that he’d heard evidence that an overdose, or high dose of Laxido alone, was “unlikely to cause the dramatic deterioration” seen on the night of 16 August. He said it was unclear whether Shane received 6 sachets or 10 or even 14 that day.

Professor Johnson acknowledged that there was “not much evidence of how much laxative had been given” and that in principle, the larger the dose, the greater the fluid build up would occur. He also told the coroner that it would be affected by how quickly each sachet was given, and whether it was given all at once or evenly distributed over a 24 hour period [which is somewhat worrying, given it appears to suggest that the court expert isn’t aware that in cases of faecal impaction it is recommended that the entire dose is taken within a 6 hour period].

Prof Johnson said that it was conceivable that a dose “less than maximum” could result in fluid being drawn into the bowel leading to distension. He said that it appears from the records that Shane opened his bowels on the 16 August, but it was “not clear how much was coming out”.

Prof Johnson in his evidence on Day 2 told the court:

CJ: Within the accepted maximum recommended dose, the amount of fluid going to the bowel will be affected by factors such as how quickly one after another the sachets are given, whether a 24 hour allowance is given within few hours or spread evenly through 24 hours, so it is conceivable and I think, more than conceivable, it is a possibility, that a dose of laxative which was less than the recommended maximum could in some circumstances have produced a volume of fluid flowing into the bowel, that led to the sequence of events of extreme bowel distension, pressure against the diaphragm, reduction of ability to ventilate the lungs.

Umm, so we don’t know for sure how much was given, and I certainly cannot say when things were given, but laxatives given within the space of a few hours, will have a bigger effect in a short time, than laxatives given over a period of 24 hours, spread evenly one every 3 to 4 hours.

C: How long does a laxative take to work? Are we even looking in the right place? It seems to me, let me go to my notes a second, the, obviously there’s a confusion regarding whether 8 sachets given on top of the 6 prescribed, or whether they were even given, because the prescription chart said X but the nursing notes said Y, they’d only go to maximum of 8 because it was agreed it shouldn’t go beyond. What I’m, if the dose was given on the evening of the 15^th, for example, how long would that take to work through? A few hours event or 12 hours to work through? I’m trying to get an understanding whether we’re looking in the right place here.

CJ: I think from the, when we’re talking about the evening, I think I recall that the laxative treatments were given at a time when the Learning Disability Team were available, and so this was probably late afternoon, although I’ve not checked all of those records.

C: I’ve got a feeling, I’ve seen 21:00 hours somewhere

CJ: Alright, fine. I think, its, the effect would be measured within hours, so for example, overnight, from, if last dose was given 9pm… then the effect of that would have been through to the bowel by the morning of the 16^th. Whether it stays in the bowel, or is expelled depends on the activity of the bowel. That fluid having been transferred into the bowel would stay there in this case, unless there was a trans anal washout. Then if further doses were, of the laxative, were given at regular prescribed level, was 3 sachets given in the morning and again in the late afternoon or early evening, there would be a cumulative effect.

I find it, that the precise mechanism is difficult to pin down exactly.

C: I agree totally

CJ: But we’re working on what is the most likely solution, when all others have been discounted.

C: I’m looking at nursing notes now, can see rectal irrigation, on 16^th. If we work on hypothesis the dose given on 15^th, on 16^th was rectal irrigation, 300mls water instilled, I assume inserted rather than expelled?

CJ: Yes

C: Observations recorded, open bowels this morning, laxatives given as prescribed. So it looks like on 16^th, would have been another irrigation, been a movement of some sort, although not clear how much expelled and then more laxatives would have been given on top.

Obviously all of this, lot of ifs and buts there.

In his summing up the coroner said that Prof Johnson had told the court (in response to a question from Shane’s grandmother) that he could not say Shane’s death was due to an overdose of laxatives, but that laxatives had a strong action and the effect “can be cumulative” especially if they are given close together.

The coroner said that he’d told the court “even if there was no overdose on the 15 August, a regularly prescribed dose on 16 August could feasibly cause the effect” if the bowel was not evacuated during the day, due to the loss of muscle mass in Shane’s bowel, and an inability to squeeze it out without assistance.

The coroner said that he’d hear the more solid the bowel was, the less room there was for liquid and that Shane had long standing distension, which meant an increase in abdominal pressure “would have a substantial effect on lung function”.

The coroner said that when he asked about Shane being observed in pain at 14:20 on 16 August, he was told that could have been as a result of an increase in abdominal pressure, but it could also have been due to contraction of his small bowel passing material into the larger bowel.

He said that he was unable to state that Shane died due to an overdose of laxatives being given, however “I am concerned about how he was monitored and recorded”. He said that Shane had long standing constipation, a lack of muscle mass in his colon, that the same long standing distension was pressing his diaphragm up into his lungs and reducing his lung function. He said that further pressure from Shane’s abnormally distended abdomen would reduce his lung function even further.

He said also, due to Shane’s lack of understanding he “may not have been completely honest with staff about how he was feeling”. He said that Shane was described as a people pleaser, and that there was evidence heard that he was telling staff he was ok, and then he was observed holding his stomach in pain when he believed staff were not looking [poor, poor Shane, and where was the professional curiosity of the surgical team?]

The coroner went on to say that Mr Jones, barrister for the Health Board, had said a short form conclusion of natural causes would be appropriate, but he disagreed. He was of the view that a narrative conclusion was most appropriate in this case. He explained that this meant he wouldn’t use one of the traditional labels heard in inquests, and that he’d give a short non-judgemental statement or sentence summing up how Shane died. This was given as follows:

Shane died from multiple organ failure caused by cardiorespiratory arrest, due to increased pressure on the lungs from abdominal distension. Distension was caused by long standing chronic constipation and fluid build up from constipation treatment.

The coroner recorded that Shane died on 17 August 2018 at Morriston Hospital, Swansea.

Prevention of Future Deaths Report

Conversation then moved on to whether the coroner was under a duty to issue a Prevention of Future Death report.

The coroner said that he’d heard in the evidence that from the point of view of the Learning Disability Service, both in their witness statements, and in oral evidence from LDN Paula Phillips, that there were suitable interactions with Shane. However, he said an element arose on Day 2, very specific to somebody in Shane’s position, in relation to what would be an appropriate amount of laxatives to be prescribed to someone who isn’t communicating pain, for one reason or another.

The coroner said that Shane had long standing constipation, such that it was causing distension. That distension was compromising Shane’s lung function. The laxative treatment for Shane’s constipation was causing further distension.

He said Shane was someone who was “not able to say, hang on something is going on in my stomach” and that was the case even in the last two day period, where symptoms would be becoming intolerable, in a person already compromised.

He said that he understood that it was “a very rare and unforeseeable condition” and that “the fact it happened means we need to try and reduce the risk of it happening again”.

Mr Jones for the Health Board said that one of the thoughts they had was that it might be covered in relation to training. They felt that the Learning Disability Service were the appropriate party to bring to the fore, as they serve as advocates for someone with a learning disability on a ward.

[I have to say this outsourcing of responsibility to what usually amounts to a small, over stretched learning disability team working restricted hours, does not fill me with much confidence; I’d far rather the focus was on all hospital staff, including surgeons, viewing patients as individuals and making appropriate adjustments to meet their needs, as the Equality Act requires them to do].

The coroner didn’t feel that alone would deal with the issue of how much laxative was appropriate for someone in Shane’s condition on 15 August 2018. He said that there was “obviously no evidence to say was an overdose, it may not have been within safe limits, but if an already distended abdomen fills up with fluid, even a lower dose than maximum might be dangerous”. The coroner was also interested in whether the timescale over which the dose was given, might be a significant factor contributing to fluid load, “so fluid is getting to the stool to soften it, as is the intention, but not overloading and causing increased volume in the abdomen”.

The coroner said he’d picked up from Mr Manson’s statement that patients who “have mental disabilities or learning difficulties, it’s quite common to see chronic or severe constipation with gross faecal loading”.

So, he reasoned “even if the exact situation is rare and unforeseeable, the potential for it in patients such as Shane could be something that is more common than initially known. So, it’s a case really of managing that class of patient really”.

Mr Jones for the Health Board said that he couldn’t really go beyond the learning assurance plans that reflects the wider learning and shared learning following the serious incident investigation. He acknowledged that perhaps there was a different message produced following the inquest that possibly needed disseminating in a similar way.

The coroner said that it was:

No-ones fault, it is simply a case that’s how the evidence came out at inquest, so no-one had any forewarning of this. It took the inquest to knuckle down and nail down the cause of death in this case. So there’s no criticism on my part to the Health Board for not addressing it sooner, everyone was in the dark and very eminent medical professionals were perplexed as to how Shane could deteriorate. No criticism of the Health Board that it was not considered sooner, simply a case of right, this is where we are, where do we go from here.

The coroner then adjourned for a short period to read the documents provided by the Swansea Bay University Health Board. On his return conversation turned to the dosage of Laxido that may have been given to Shane.

C: I can’t make a criticism because I’ve got no evidence on whether or not it was that dose that was given. Ultimately if that dose was given, clearly in safe guidelines as per manufacturer but in Shane’s unique position its excessive. If additional PRN given, topped up to 8 sachets, 10 or 14, we simply don’t know. It’s a case of ensuring where there’s a significantly compromised abdomen, due to distension, that yes of course you want them to have the prescribed amount, but whether administered in one go or staggered basis, that’s something that maybe ought to be given consideration. If you say won’t be effective, fine it’s not effective, but at least have exploration of issue and answer.

RJ: Electronic prescribing will assist with clarification of who’s prescribing what and when it’s given.

C: Absolutely

RJ: The discrete issue, other issue applying caution to patients in similar situation as Shane, will require a little thought on behalf of the Health Board if possible.

C: Yes. On that basis I think, I do this very sparingly, I am going to issue a Prevention of Future Death report with those concerns and give the Trust the opportunity to respond to it. Mindful they are usually proactive, is no criticism of the Trust. The issue arrived at inquest.

Has gone from a coronial power to a coronial duty in a situation where I’m not satisfied at this stage my concerns have been allayed, so the only tool at my disposal is to issue this report, and will allow the Trust to consider whether any action is required.

A body is entitled to come back and say we don’t have those concerns, we’re not making changes, it’s very rare and probably folly on behalf of bodies if they take that view, but they have that right, but nevertheless is something that needs to be looked at, and reasoned, and assessed whether or not steps can be taken, albeit in these very narrow circumstances.

The coroner thanked counsel, the witnesses and Shane’s family for their assistance with the inquest. The last word went to Shane’s grandfather:

C: I know it was 5 years ago but I’m sure he burns bright in your hearts nevertheless.

Grandfather: Just wanted to say from family who’s lost a dear member of the family, it’s comforting to know in the future, there might be some development so would stop, so wouldn’t have same situation again, so different rules or conditions to follow. It’s comforting for family to know some action may be taken in the future.

C: Of course, it’s part of the coronial process, I do think the Health Board are proactive in doing that, regardless of whether failings are found. I do find them proactive, regardless of whether criticism made or not. It’s very good benefit for the whole system, and I’m pleased to hear you take some comfort from that. Thank you.

The inquest concluded at 13:40 on Wednesday 19 July 2023.

I guess i’m left wondering what more needs to happen? According to all LEDER statistics ever published, constipation is a serious issue for learning disabled people. We have known this for decades.

So why is constipation still not being taken seriously?

Why is it not understood that laxatives could make things worse?

And why, if it is known that constipation is a very serious condition, that can and does lead to the premature deaths of people, do professionals at each inquest express their surprise at what happened?

Whether that’s Richard’s inquest, Jared’s inquest, Sally’s inquest, or Shane’s inquest? What does it take to learn?