Angharad Griffiths. Gastroenteritis, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.28790
Conor is a 10 kg, 13 month-old boy who’s presented to the ED with a 24-hour history of diarrhoea and vomiting. He has had 5 episodes of non-bloody, non-bilious vomits. Since waking up this morning has two episodes of loose/watery non-bloody malodorous stools. They have not ‘flooded’ the nappy but were quite large. He is taking sips of fluid (mixtures of water, milk, and juice being offered) and has only eaten half a digestive biscuit so far today. He has had a fairly large wet nappy last night, but not since, though it’s now difficult to tell as his last nappy was dirty. He is alert and looking around while being carried but is upset on leaving his mother’s arms. He cries with tears, has a normal heart rate but his mother is worried about his dry lips. She was told by a healthcare worker neighbour that he will “need a drip”. CRT, HR, and BP are normal. His temperature is 37.8. His nappy is dry and has been on for 3 hours now. His capillary glucose measurement is 3.2. You decide he’s probably mildly dehydrated.
Introduction
Gastroenteritis (GE) is the presence or diarrhoea or vomiting (or both) that may or may not be accompanied by fever, abdominal pain and anorexia. Diarrhoea is the passage of excessively liquidy or frequent stools with liquid high water content. Although often felt to be a common minor illness presentation, it is a major cause of childhood mortality and morbidity, causing millions of deaths worldwide in children in low and middle-income countries; of all child deaths from gastroenteritis 78% occur in Africa and South-East Asia.
Gastroenteritis accounts for a huge proportion of GP and ED presentations. In Europe, acute gastroenteritis the third commonest cause of hospital admission, accounting for between 4-17% of admissions. In Australia, gastroenteritis caused by rotavirus alone accounts for 115,000 GP visits, 22,000 ED visits and 10,000 hospital admissions a year, with an estimated cost of 30m Australian Dollars (£12m, €18m). In the UK, 20% of GP consultations in the under 5’s are for GE.
It is imperative that the child with gastroenteritis is differentiated from more sinister causes of vomiting. The presence of diarrhoea is reassuring but doesn’t exclude other intra-abdominal causes. The same can be said for pain out of proportion with gastroenteritis, distension, peritoneal signs or localised tenderness.
Most cases are not associated with complications but when complications do occur, the commonest are electrolyte disturbance and metabolic acidosis. Supplementary fluids through oral or intravenous routes are the most effective way to avoid these complications.
Gastroenteritis in low and middle-income countries can present differently, has different aetiologies, is often managed differently, and is a larger burden to healthcare systems in general than in high-income countries. This post will focus on gastroenteritis in high-income countries. For more information about comparisons of guidelines across the world; Vecchio et al (2016) is an interesting read.
This is not meant to provide a clinical practice guideline; rather an overview of the illness. Many (if not all!) paediatric emergency departments or general paediatric units have their own guidelines.
Pathophysiology
Worldwide, the commonest causes are viral pathogens, most commonly rotaviruses and noroviruses. Viral infections cause damage to the small bowel enterocytes with resultant low-grade fevers and watery diarrhoea – classically without blood. Rotavirus strains are seasonal and vary within different geographical areas. The peak age for these infections is between 6 months and 2 years. Children with poor nutrition are at higher risk of acquiring gastroenteritis and developing dehydration and complications.
Children with bacterial gastroenteritis are more likely to have bloody stool.
Escherichia coli and Shigella dysenteriae can be complicated by haemolytic uraemic syndrome (HUS). This is an acute onset, microangiopathic haemolytic anaemia, thrombocytopaenia, acute renal impairment and multisystem involvement. (Just to confuse things, HUS can present in the absence of bloody diarrhoea.)
Pathogens can be generalised into four groups:
- Viral (70% of cases): Rotavirus, Norovirus, Adenovirus, Enterovirus
- Bacterial (10-20% of cases): Campylobacter jejuni, Salmonella spp, Escherichia coli, Shigella spp, Yersinia enterocolitica.
- Protozoa (unusual, accounting for <10%): Cryptosporidium, Giardia lamblia, Entamoeba histolytica
- Helminths (very unusual): Strongyloides stercoralis
Transmission
Pathogens are spread mainly via the faeco-oral route, acquired by ingesting contaminated food or drink. Water may be contaminated with bacteria, viruses, or protozoa. Undercooked (or inappropriately stored/cooked) meats and seafood are common culprits of bacterial pathogens. Bacterial contaminants can produce toxins (e.g. Bacillus cereus in re-warmed rice or Staphylococcus aureus in ice-cream).
Pathogens causing gastroenteritis can also be transmitted without the patient being symptomatic.
Assessment
Gastroenteritis is a clinical diagnosis. Enquire about sick/infectious contacts and potential sources (recent travel, food). Enquire about the frequency of symptoms and intake of fluids. Note the frequency of urination. Note other things that may cause diarrhoea e.g. recent use of enteral antibiotics or chronic constipation with overflow diarrhoea the presenting feature.
In the presence of signs such as high fever, long duration of symptoms, severe abdominal pain or bilious vomiting; review the diagnosis and do not immediately label as gastroenteritis.
Oral hydration fluids
Most children are not dehydrated and can tolerate oral fluids and so can be managed at home. Take a look at Nikki Abela’s DFTB19 talk on top tips for a high yield dehydration assessment.
When children are only mildly to moderately dehydrated, as a general rule they can be treated with oral / enteral rehydration with low osmolality oral rehydration solution (ORS). Worldwide, ORS is recognised as first line therapy and treating mild to moderate dehydration with enteral rehydration is supported by the WHO, European Society for Paediatric Gastroenterology and the American Academy of Paediatrics. The WHO recommends a low osmolality (hypo-osmolar) solution, usually containing sodium, potassium, chloride, carbohydrate (glucose) and a base. Low osmolarity solutions reduce the need for IV fluids, reduce stool output and reduce vomiting frequency.
But… a major limitation to the use of ORS is its taste – and this is where apple juice comes in. For minimally dehydrated patients, half-strength apple juice is associated with fewer treatment failures compared to ORS and could suit as a more palatable alternative. Take a look at a sweet summary (pun intended!) of the “apple juice trial”.
Breastfeeding should continue and a child can be supplemented with ORS if this is needed. Children can go back to a normal diet after the illness has passed.
Enteral (oral / NG) versus IV hydration
Most studies show that enteral rehydration with ORS is just as effective as IV hydration in mild to moderate dehydration with a 2006 Cochrane analysis concluding that enteral rehydration is as effective if not better than IV rehydration with fewer adverse events and a shorter hospital stay. It is also less invasive (even with NG placement) and anecdotally satisfaction is greater amongst parents. It is very safe.
Enteral rehydration only fails in approximately 1 in 20-25 children.
Barriers to oral rehydration include unfamiliarity with the benefits, misconception that it takes longer than IV therapy, and that it has a high failure rate.
Contraindications to enteral rehydration include haemodynamic instability, abdominal distension, concern over ileus, absent bowel sounds, or impaired airway reflexes.
IV therapy is more invasive and involves placing and maintaining IV access. There are also iatrogenic complications including electrolyte disturbance should inappropriate fluids / composition / volume / rate be used.
But… in severely dehydrated children, put away the ORS and apple juice. They will need IV rehydration as first line.
Antiemetics
How can we support enteral fluids? Well, children who receive Ondansetron are less likely to vomit, have greater oral intake and are less likely to require IV hydration. A Cochrane review demonstrates that Ondansetron also increases the proportion of children who stop vomiting when compared to placebo [RR1.4] and reduces the proportion of children needing IV therapy (and therefore admission rate) [RR 0.41]. Median length of stay is also shorter in the ED.
Reported side effects are rare with very few reported side effects other than a few cases of increased frequency of diarrhoea.
Antiemetics alleviate vomiting by acting on the ChemoReceptor Trigger Zone and vomiting centre. Ondansetron is a 5HT3 receptor antagonist. This class of antiemetics have fewer adverse effects (than dopamine antagonists, anticholinergics, antihistamines and corticosteroids) and can be safely used in children. The NICE guideline discusses its off-licence use (at time of publication it’s licence was for post-operative nausea and vomiting and chemotherapy induced vomiting).
Ondansetron prolongs the QT interval. Recommendations are it should be avoided in those with long QT and should be used in caution where there may be electrolyte imbalance (severe dehydration) or on other QT-prolonging medication.
Ondansetron is relatively cheap £1.71 for 10 4mg tablets and is available in oro-dispersible form (though these are much more expensive at £36 for 10x4mg tablets) and liquid (£36.82 for 40mg [50ml] bottle).
Probiotics
An ESPGHAN working group position paper on the use of probiotics in acute paediatric gastroenteritis concludes that:
- Effects seen in clinical trial are probiotic strain specific (this makes ‘trial-life’ difficult to replicate in ‘real-life’).
- A lack of evidence now doesn’t mean that there won’t be evidence sometime in the future.
- Safety profile of certain strains cannot be extrapolated to other strains.
- Studies that report benefits in certain doses in certain settings have insufficient evidence to support a health benefit at lower doses and different setting.
…the jury’s still out.
Other therapies
Antibiotics and anti-diarrhoeal agents aren’t routinely recommended in the management of paediatric gastroenteritis.
For gastroenteritis in high income countries, the WHO does not recommend adding zinc to a treatment regimen (it is for gastroenteritis in low and middle income countries).
Investigations
Routine lab testing in mild and moderate gastroenteritis is of little value in these patients and should be avoided unless clinically indicated.
This goes for stool samples too. Stool cultures are not routinely indicated in immunocompetent children with non-bloody diarrhoea.
Confirmation of viral gastroenteritis after the child has been discharged from the ED, and likely on the road to recovery at home, adds very little to (A) the clinical diagnosis of viral gastroenteritis in the ED, (B) the management plan and (C) the clinical outcome.
Should the investigation influence management, then stool sampling may be of benefit. This could be applicable where an outbreak may be suspected in school or creche, where there may be a public health benefit.
Stool samples should be sent in cases of bloody diarrhoea, immunodeficiency and recent foreign travel.
How about tests for dehydration? Sadly there is no one test that correlates clinically with dehydration. Urine specific gravity in infants is unreliable because the kidney reaches adult concentrating abilities after the age of 1. Also, the child often doesn’t begin urinating until rehydration has begun.
And glucose? Well, almost 10% of GE patients aged 1 month to 5 years in high income countries present with hypoglycaemia. Risk factors for hypoglycaemia on presentation include a longer duration of vomiting and increased frequency of vomiting. It would be reasonable to consider point of care glucose testing at triage for young children as identifying hypoglycaemia on clinical ground alone is difficult in this age group.
Prevention
The key to reducing the burden (and generally for an all-round happier life!) is in the prevention of acute gastroenteritis. Rotavirus vaccination is now commonplace thought the antibodies, the UK & Ireland and other countries around the world. It is very effective.
In the home and in the ED…Handwashing, handwashing, handwashing!
Vaccination leads to a profound reduction in presentations and admissions and a fall in overall seasonal workload, often within the first year after the introduction of universal vaccination against rotavirus. Even though only those under 1 year old are generally vaccinated, it has been shown to contribute to a significant herd effect with fewer cases than expected in older children. In Scotland, where initial vaccine uptake was 93- 94% during the first 2 years, annual rotavirus confirmed gastroenteritis cases fell by 84.7%, bed days reduced by 91% (from 325 to just 29), without any documented cases of intussusception. Reductions were seen across all age groups despite only infants receiving the vaccine. Similar results can be seen in other areas of the UK and Ireland.
The not to miss bits
- Do not assume isolated vomiting in a child is gastroenteritis. Consider other causes -these very widely from inborn errors of metabolism to diabetes mellitus, surgical obstruction to urinary tract infections. If you’d like to hear more, check out Dani’s talk on vomiting in children in DFTB Essentials.
- Beware chronic diarrhoea in an infant – do they have malabsorption or is this a presentation of IBD or an immunodeficiency?
- Beware the non-thriving child with diarrhoea.
- And beware chronic diarrhoea.
But what happened to Conor?
Conor was given a cup of Dioralyte ORS and his favourite beaker filled with Dioralyte. His mum was encouraged to give him syringes of 5 mls of Dioralyte frequently or for him to take sips from his beaker and was asked to document on a piece of paper how many he received. He vomited after 30 minutes of this therapy.
You give him a dose of Ondansetron and place an NG tube and give him 100mls (10ml/kg) over 1 hour after deciding he does not need rapid rehydration but slightly more than normal maintenance. He then receives maintenance volumes of Dioralyte via his NG, which he tolerates well and then starts to take his own sips from his beaker.
He does not vomit in the ED again, has one episode of loose stools, passes urine, and is tolerating fluids orally. He’s smiling at you! You feel he can be discharged and council his mum regarding regular fluid intake, choice of fluids, of any red flags, and encouraged to return in the event of any concern.
Conor’s Dad calls to say that Conor’s 3 year old sister at home is now vomiting too! But it’s OK – He’s not too worried about her and Conor’s Mum has advised his Dad to start giving her regular sips of Dioralyte at home…
References
Colletti JE, Brown KM, Sharieff GQ, Barata IA, Ishimine P. The Management of Children with Gastroenteritis and Dehydration in the Emergency Department. J Emerg Med [Internet]. 2010;38(5):686–98. Available from: https://dx.doi.org/10.1016/j.jemermed.2008.06.015
Elliott EJ. Acute gastroenteritis in children. Br Med J. 2007;334(7583):35–40.
Vecchio A Lo, Dias A, Berkley JA, Boey C, Cohen MB, Cruchet S, et al. Comparison of Recommendations in Clinical Practice Guidelines for Acute Gastroenteritis in Children. Gastroenterology. 2016;63(2):226–35.
Freedman SB, Willan AR, Boutis K, Schuh S. Effect of dilute apple juice and preferred fluids vs electrolyte maintenance solution on treatment failure among children with mild gastroenteritis: A randomized clinical trial. JAMA – J Am Med Assoc. 2016;315(18):1966–74.
BK F, A H, JC C. Enteral vs Intravenous regydration therapy for children with gastroenteritis: A meta-analysis of randomized controlled trials. Arch Paediatr Adolesc. 2004;158(1):483–90.
Hartling L, Bellemare S, Wiebe N, Kf R, Tp K, Wr C, et al. Oral versus intravenous rehydration for treating dehydration due to gastroenteritis in children (Review). 2006;
Fedorowicz Z, Jagannath V, Carter B. Antiemetics for reducing vomiting related to acute gastroenteritis in children and adolescents. [Internet]. Cochrane database of systematic reviews. 2011. Available from: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD005506.pub5/full
NICE. Management of vomiting omiting in children and y young oung people with gastroenteritis : ondansetron. NICE GUIDELINES. 2014. p. 1–20.
Szajewska H, Guarino A, Hojsak I, Indrio F, Kolacek S, Shamir R, et al. Use of Probiotics for Management of Acute Gastroenteritis : A Position Paper by the ESPGHAN Working Group for Probiotics and Prebiotics. 2014;58(4):531–9.
Forrest R, Jones L, Willocks L, Hardie A, Templeton K. Impact of the introduction of rotavirus vaccination on paediatric hospital admissions , Lothian , Scotland : a retrospective observational study. 2017;323–7.
MARLOW RD, MUIR P, VIPOND I, TROTTER CL FA. Assessing the impacts from the first year of rotavirus vaccination in the UK. Arch Dis Child. 2015;100(Supl 3):A30.
Ethical considerations and decision-making about the resuscitation of very sick children
Karen Horridge. Ethical considerations and decision-making about the resuscitation of very sick children, Don't Forget the Bubbles, 2020. Available at:
https://doi.org/10.31440/DFTB.30898
You wouldn’t judge a book by its cover, would you?
When thinking about the knotty matter of decision-making about resuscitation of sick children, we need to remember:
Every child’s life matters.
To always listen to the child, their parents and those who know the child best and include them in best-interests decision-making.
To always make decisions within an ethical framework and record the process of decision-making and who was involved.
To ensure pathways are in place to record and make visible best-interests’ decisions about levels of intervention.
So, what can help us with an ethical framework? Our friends at the General Medical Council have laid this out for us, in ‘Treatment and care towards the end of life: good practice in decision-making’.
This helpful document reminds us that:
When making decisions, even in a dire emergency, we are reminded to:
We must be careful not to make judgements based on poorly informed or unfounded assumptions about the impact of disability on the child or young person’s quality of life.
So, you wouldn’t judge a book by its cover, would you?
Disabled children and young people come in all shapes and sizes. We can’t all be experts in each child, which is why it is so important for us to listen to parents and those who know the child best.
Please do beware of falling down the rabbit hole of preconceived ideas about what a child’s quality of life is like – always ask parents and familiar carers what the child is like when well. They may have photos and videos they can show you of their child having fun and taking part in everyday activities.
Disabled children may appear, sound and behave differently when unwell. This may be because they cannot tell you where it hurts or how they feel. They may present with behaviours that others may see as challenging. They may not tick the expected boxes on the usual screening tools, for example, for sepsis. Their temperatures may be low when you might expect them to be high, they might have high or low heart rates and may not be able to mount the expected increased work of breathing, because their respiratory muscles may be too weak for them to do so. Their control centres may not work as expected.
Hasty decisions based on preconceived ideas can lead to poor outcomes, including premature death. None of us want that.
So, what’s all this about premature death in people with learning disabilities?
If you are ready for a shocking read, then take a look at Death by Indifference, written by Mencap in 2006, but just as relevant today.
If you prefer some e-learning on the subject, take time to work through the Disability Matters session: Equal Access to the Best Health Outcomes Matters. This was co-produced with disabled children, young people, parent carers and other experts.
Then there’s the Confidential Inquiry into Premature Deaths of People with Learning Disabilities report. This report showed that women and men with learning disabilities die 29 and 23 years, respectively, sooner than women and men without learning disabilities.
So what about children? The series of reports on Why Children Die show that more than half of all children who die in England have a pre-existing, life-limiting condition. So, we all need to pay great attention and ensure we achieve the very best outcomes for these children and all children.
The team at Bristol University have built on the work they did for the CIPOLD report and now lead on the Learning Disabilities Mortality Review (LeDeR) programme. This links to the Child Death Review programme and considers the circumstances of every death of anyone with a learning disability at any age. The latest annual report can be found here.
Between 01/07/2016 and 31/12/2019, 516 children aged 4-17 years were notified to the LeDeR programme. Of these children and young people who died, 43% were from Black and Minority Ethnic groups. 46% had profound and multiple disabilities.
Whilst 7% of the deaths reported to the LeDeR programme were of children and young people aged 4-17 years, the death rate overall in the 5-19 years age group in England was 0.3%.
The LeDeR programme 2019 report highlights good and problematic practices that the multidisciplinary team, including people with learning disabilities, identified.
Good practices included:
Problematic areas of practice to reflect and learn from included:
Recommendations from the LeDeR report included:
So where is the evidence about what parents think about end-of-life decision making? Dr Sarah Mitchell is a GP who is really interested in this and has written a useful paper in BMJ Open on the subject.
Sarah and her team interviewed parents and reported that:
‘place of acceptance’
With regard to the last statement, preferred place of death is, in my experience, different for each family. Some choose home, others need to know that no stone has been left unturned right to the end, so choose intensive care. Whilst this may not always sit comfortably with paediatric intensive care teams, for some families it is what is needed to bring them peace in their journeys of grief. I have been witness to what I would consider to be ‘good deaths’ in a wide range of settings, including homes, hospices, children’s wards and intensive care units over many years. What matters most and what families remember, are how the child’s needs were identified and addressed at every step and how they are families were kept in the loop about what was happening, including being fully involved in all decision-making.
It’s all well and good listening to my views as an experienced disability paediatrician on the subject, but much better to hear directly from a mother who has been on the advance care planning journey. Here are Kay’s words, describing her and her family’s journey with her son Matthew. If you prefer to hear her speaking directly, please check out the Disability Matters e-learning session Advance Care Planning Matters.
Kay says:
“Matthew had quite severe learning and physical disabilities. He was a very complex child and we used the Emergency Health Care Plan to help plan for the future and to enable us to communicate fully with other health professionals in the healthcare setting.
Matthew didn’t have the capacity to actually make decisions for himself although he was a very wilful little boy who had very clear likes and dislikes, so he could make decisions for himself that were relevant to his day to day needs like what he wanted to eat, where he wanted to go. He had no formal communication, but as parents and the people who were involved with him we learned to read what he was trying to tell us, and as I say, he was very clear on what he liked and disliked doing but wouldn’t have been able to make the kind of big decisions that as parents we were responsible for making for him.
We did have a very large team involved in Matthew’s care and we discussed the Plan with his consultant paediatrician but she also took into account the views of people like the occupational therapists, physiotherapists, the surgeons who were dealing with him as well as the parents, myself and Matthew’s dad. We were all involved in the discussions around the development of the Plan and what was in his best interests.
Matthew’s Health Care Plan went everywhere with him and it lived in his communication bag on the back of his wheelchair. So it went with him to school, to his respite and to his dad’s house when he was there and also it was with him whenever he needed to go into hospital.
The Emergency Health Care Plan actually protected Matthew’s rights should he ever become seriously unwell. It clearly stated that he needed full resuscitation and any treatment that was available to him and clinicians then could use the plan to make judgments on what treatment would be necessary but he was able then to access a full range of treatment that would be available to any other child in a similar circumstance.
Matthew was very well for the early part of his life but when he turned 11 he had an accident, a quite serious accident and we were able to use the Emergency Healthcare Plan to access full range of medical interventions for him, as a result of that he did end up in intensive care for the first time. After that we did go through a period when he was 12 he had a twisted bowel, so he was literally in and out of intensive care and needed to be resuscitated on quite a few occasions, unfortunately, but his plan enabled us to access all of this medical intervention for him and saved his life in that instance.
Over a period of about a year, Matthew became more and more unwell. He needed regular trips to Intensive Care and regular trips to the hospital. The Plan actually went with him to hospital in Newcastle. It gave us the assurance that during these periods of Matthew being very, very poorly that the doctors in the hospital that weren’t used to dealing with Matthew, the Plan gave them all the information so we didn’t have to go through it every time that he was admitted. They trusted what we were saying because it was backed up by the Plan”.
Matthew’s paediatrician says:
“Matthew developed a lot of new symptoms that were unexplained; his seizures were becoming less controlled and we needed discussions around how we were going to treat these new symptoms as and when they appeared and what needed to be done for them.
So at this point in time, having taken account of the views of both of Matthew’s parents and the whole of the multidisciplinary team, we made a decision in his best interests that, at that time, further intrusive procedures or further intensive care was not going to be helpful or appropriate for him and might cause him further distress. So, together, we changed the wording on Matthew’s Advanced Care Plan at that time to reflect the possibility of him being allowed a natural death when his time came, recognising that we would always be there to manage his symptoms and always be there to support his family”.
Kay continues:
“Matthew had had a chest infection and was having great difficulty breathing and his dad brought him up to hospital. We called all the family, it was obvious that Matthew was dying at this point. We had all the family called from all corners of the UK to come and say goodbye to him. We sat for hours and hours with him in the hospital ward and he was almost pronounced dead when all of a sudden, he decided it wasn’t quite his time and he took a great big breath and started breathing normally and all his colour came back. His dad described it as, like, “re-booting” his system as he wasn’t on any treatment. He was having no medication or anything and he just decided “No, it’s not my time. I’m going to come back” and we had him for another five weeks after that.
Then one day, approximately five weeks after the “re-booting” incident, Matthew wasn’t very well at all. He was due to see his paediatrician in clinic that day, but I phoned and said that “I don’t think he’s up to actually travelling to hospital,” so the paediatrician agreed to visit at home, so we waited. He’d had a massive seizure. I’d had to give him medication to bring him back from the seizure. When his paediatrician arrived, it became obvious that he was deteriorating very, very quickly and we decided that we were just going to keep him at home and see what the outcome would be, whether he would “re-boot” again or how it would play out this time”.
Matthew’s paediatrician continues:
“So Matthew was really very frail on clinical assessment at this point, so I needed to put in place the right procedures to make sure that his needs were met and the family’s needs were met. He was very peaceful and he was essentially drifting off to sleep. He didn’t have any difficult symptoms at that point that needed any changes in medication or changes in his Plan. What we did at that point is I made arrangements for if Matthew was to slip away in the night, a colleague to be able to come out and support the family and to confirm his death at that point. I also contacted the Coroner, because our Coroner liked to know in advance about any child’s death and if there is a death that is likely to be expected as defined under the Child Death Review Procedures, then our Coroner liked to know in advance. So, we made all of those arrangements and let the family have their special private time together”.
Kay reflects:
“We spent quite a few hours with Matthew – we called close family this time around. We didn’t get everybody coming from the far end of the country to be with Matthew. So, the time when Matthew did die, it was very, very peaceful. We had some quality time with him. We had a wonderful five weeks planning memories, planting memories for the other children and we spent those few hours reflecting on that and talking and supporting each other through the inevitable outcome of Matthew dying in the early hours of the morning.
We found that, when dealing with the professionals around Matthew’s death, that being able to change the wording of the Emergency Health Care Plan it kind of validated for us that what we wanted … we wanted Matthew to be peaceful and at home when he died, surrounded by his toys and his family. We felt that the Plan, when we read the wording of it, was quite a shock to see that he should be allowed to ‘die with dignity’ but it validated what we were feeling, that it gave us permission to ask that he could die at home where we wanted him to be. It made us feel that we weren’t asking for anything that was out of the ordinary or not possible and felt that we were actually more in control of the situation when the time actually came for Matthew to pass away”.
Achieving a supporting a child or young person through a good death is an important part of our job, when death is inevitable. We need to ensure we always steer the best possible course through the tricky waters of decision-making, protecting the rights of all children and young people to the best possible outcomes.
So, back to the key messages
If you want to read more about advance care planning, look at:
Horridge KA. Advance Care Planning: practicalities, legalities, complexities and controversies. Arch Dis Child. 2015;100:380-385
If you want to see and hear examples of the conversations that underpin advance care planning, more free e-learning can be found here:
https://councilfordisabledchildren.org.uk/our-work/health-and-wellbeing/practice/emergency-healthcare-plans
To listen to discussions between paediatricians and a parent about signs of sepsis in disabled children, tune in to Episode 4 of the RCPCH sepsis podcast series here.
Thank you for your time and all the best for your advance planning and decision-making.