Parents who Believe in Miracles are "torturing" Dying Children.

An article published recently in The Journal of Medical Ethics, in the UK, cited over two hundred cases where the parents' religious beliefs adversely affected the care of children in intensive care. In the majority of cases there was some meeting of minds but in 17 cases no accommodation was possible between the parents and the medical staff caring for their dying children. The authors, who included medical staff at Great Ormond Street Hospital along with their chaplaincy department, expressed concern that there was an increasing number of instances where parents required futile and intrusive treatment in the expectation of a miraculous recovery. The ethical issue was whether parents had the right to 'stonewall' the medical judgement of the health professionals and impose their religious beliefs on their children with pointless medical interventions.

'Christian Nurses & Midwives' (CNM) addressed this very problem in the Spring 2007 issue of CNM News, number 17, in an article titled 'Faith in Faith or Faith in God?' I was the author of that article and given the current interest in the media I thought I would revisit this issue here. I will start with a major caveat - I have only read the abstract of the JME article and some of the media comment resulting from it. I am not a subscriber to JME so I can't comment in detail on the piece in question. But given my prior interest in this topic I hope my thoughts will be helpful to the reader.

CNM gave some consideration to the interaction of 'faith' and medical treatment in the light of some cases not dissimilar to the ones cited by JME. Those were instances I had personal knowledge of in my work in Paediatric Intensive Care over twenty years and as a committed Christian I could bring to bear some insight into the predicament the parents of dying children face in the context of their 'faith' position. I too have met parents who wished to continue medical treatment in the hope of divine intervention and wrestled with the ethical dilemma of such demands as well as having to reflect on my own understanding of my own 'faith' position. My article 'Faith in Faith or Faith in God?' arose out of these demanding challenges.

The obvious point to make is that parents who seek medical treatment in the hope of a miraculous outcome are not doing so from a considered conviction borne of their faith as the JME authors intimate. Such a position is self evidently paradoxical and conflicted; why is the hoped for miracle contingent on human effort?! Theologically it is ill-considered. In fact if a belief in miracles was the driving motivation it ought logically to give rise to the opposite problem - of parents refusing reasonable medical treatment. So the dynamic is not the superficially stated position, the true dynamic lay elsewhere.

In 'Faith in Faith or Faith in God?' I set the stated 'faith' in the context of a faith community with a self deluding and self re-enforcing faulty theology. The media reports of the JME article set the parents up as discrete individuals with little social context. However it struck me that these individuals exist in the context of a 'faith' community and one, as a committed evangelical Christian, I would argue has a faulty theology which has triumphalistic expectations and a 'party' line to be adhered to. The sheer paradox I've already alluded to should be a clue that it is faulty on every level. For every miraculous deliverance in the Biblical text there are more accounts of suffering. And while it is entirely appropriate to pray for deliverance it is difficult to reconcile the naive notion that Christians are above the common suffering of humanity with the stories of Job, Jeremiah, Jesus or Paul. The conflict JME points to is not between secular values and Christianity as it implies, it is actually between Christian values and worldly ones defined by which kingdom we seek to belong to; is it a 'this worldly one' or a 'heavenly one'? From that perspective the JME authors have far more in common with the parents they despise than either have with authentic Biblical Christianity!

I am troubled by reports of the JME article which use words like 'torturing' and 'stonewall' (these may not be in the original JME article of course) which are clearly weighted to prejudice the reader and draw them on to a particular side of the debate. The discussion actually comes to centre on 'distributive justice' - a disingenuous term which means 'health care rationing' - ie each individual is entitled to only so much of health care product at the discretion of the health care professional. That is the core issue here. I'm not sure I would want that sort of power or responsibility but that is the end point the JME authors are pointing to.... an ethical debate about whether agents of the state have the power to decide the fate of your children.

'Hard cases make bad law' means that when we make generalities based on relatively rare events we are only creating a future injustice. Even assuming that the JME article is merely attempting to stir up a debate, rather than being a tendentious polemic, the problem is that it is theologically and socially naive. No doctor is compelled to 'torture' a dying child... This is mere journalistic hyperbole! If this is to be a mature discussion then such histrionics need to be set aside.

And before you comment on this article check out the one I did in 2007!

How would I deal with these ethical situations? If I thought that there was no realistic prospect of recovery despite all our efforts in intensive care - I would tell the parents we had come to the end of all that Man can do... an acknowledgement a secular humanist is far more likely to choke on than a believer. Yet such an admission instantly resolves the clash of worldviews and focuses the discussion where it should be both medically and theologically without any contrived phoney war between the two. These parents should be treated as any other parent in a grief state of 'bargaining' or 'denial'.

What these parents most fear is not breaking faith with God, but breaking faith with their dying child.

Nairobi!

Today a team of us from the Evelina Children's Hospital will fly out to Kenya for 8 days. The plan is to do open heart operations on children born with cardiac defects who would not otherwise have access to this sort of surgery. We will be based at the Kenyatta National Hospital in Nairobi and will take over one of their operating theatres. My role will be to help run an improvised Paediatric Intensive Care Unit on one of the wards there. And we will try and blitz as many operations as we can in the time available. This will be my fifth such trip. It will be very hard work but it is an adventure!

Neverland Matrix.

I was once caring for an 8 year old who was critically ill in Intensive Care; Ventilated, on multiple inotropes and on CVVH.
A relative was keeping a vigil by her bed side during the night. In the small hours when everything was quiet we got to talking. He held the young girl's hand and quietly shook his head.
'When I watch TV and I've had enough sadness - I press the doofer and its gone and everything is happy. When I'm fed up with the news and all that stuff I just go...' He mimed pointing a TV remote control. 'One click...', he clacked his tongue, '...and its gone from my life'. He sighed.
'Well... I keep clicking and it is all still here.... it doesn't go away!' he said.

The world as presented by TV is a double illusion. It not only portrays a distorted sense of reality; it also implies a distorted measure of control of that reality. Cocooned from the hardships most humans face daily a viewer drinking deeply in the media well may sincerely believe that 'all is for the best, in the best of all possible worlds'... and if it isn't we can always turn over.

It is only when real reality intervenes that our perspective is reorientated and both those perceptions, a false reality and a phoney sense of control, are shown to be illusions. How many people go through life mired in illusion, thinking that perception is the reality? What does it take to wake people up?

MYALGIC ENCEPHALOMYELITIS, also known as CHRONIC FATIGUE SYNDROME (CFS).

In the course of my 30 year career, most of it in a critical care setting, I have never seen anyone admitted to hospital with ME, I have never seen anyone in Intensive Care with ME and I have certainly never seen anyone die of it.
Not until now that is; in a recent court case Kay Gildersdale was acquitted of murder after killing her daughter who suffered from ME. This case is deeply troubling; are we saying that it is okay to kill people with psycho-somatic illnesses?
The Euthanasia lobby have welcomed the outcome of this trial and it sets a very worrying precedent. When people demand physician assisted suicide for the pain they feel are we discussing physical pain (which can be alleviated with opiates if neccesary) or are we talking about existential angst? By which I mean the pain of living in a fallen world?

PAED-IATRIC INTENSIVE CARE & PAED-IATRIC CARDIO-THORACIC SURGERY AT THE EVELINA.

Evelina Children's Hospital

Professorships have been awarded to Mr David Anderson and Dr Ian Murdoch. This is not just a personal honour for them but also recognises the work done within the PICU as a whole at ECH in London. Mr Anderson is one of the leading cardiac surgeons in the world. Dr Murdoch is the lead consultant who consolidated the work of PICU at Guy's Hospital and pioneered the paediatric retrieval service there in the early 1990's. All these services moved from Guy's to St Thomas' in 2005 into a modern purpose built wing becoming known as the Evelina Children's Hospital. It is no surprise that this institution came top in the recent Kennedy review.... and by some margin!

Personally it has been an enormous privilege to have been part of this whole remarkable enterprise for the last twenty years!

These awards are well deserved. Congratulations!

http://www.strs.nhs.uk/

MOMBASA 2010.

The latest cardiac surgical team has just returned from Mombasa after caring for 16 patients undergoing cardiovascular surgery. Mr David Anderson was the surgeon and most of the team also came from the Evelina Children's Hospital in London.
I was part of the nursing team caring for the children following surgery to correct their congenital heart defects. We were based at The Mombasa Hospital who had kindly allowed us to use some of their facilities in their ICU.
After 6 days the tally stands at 3 ("old") PDAs, 2 ASDs, 2 VSDs, 1 Partial AVSD, 4 Mitral Valve Repairs, 1 Sub-Aortic Resection, 1 Tetralogy of Fallot, 1 Glenn Shunt and 1 fifteen year old Coarctation.
This is my fourth such trip to Kenya, but my first to Mombasa, all my previous experience was in Nairobi at the Kenyatta National Hospital.

Ex Opere Operato!

A casual observer might wonder why I have taken such a keen interest in the subject of baptism. It isn't just that there is a school of thought called "Federal Vision" doing the rounds in Anglican Evangelical circles, my interest predates this. I am a Charge Nurse who has worked in children's intensive care for over a decade and a half. I have lost count of the number of infants I've seen die; not I hasten to add because our death rates are higher than anyone else's - it's just that I've been on this scene a long time! Not surprisingly I've puzzled over the subject of infant salvation and the related topic of the role of infant baptism.... or is it related?

There was an incident recently where the parents wanted their dying child baptised into the RC church. "In Extremis" it is not unknown for healthcare professionals to baptise infants - ironically I had to describe to an RC colleague what she would need to do to perform the rite.

As I understand it, according to Canon Law 861, an RC baptism is only valid in such circumstances if the person performing the rite does so with the "requisite intention", ie does the healthcare professional intend what the Church intends by the act? This seems, at face value, to be a denial of the principle of ex opere operato. How can anyone have assurance that they know what your intentions are?

The link between the parents faith and their child's salvation is broken by the intrusion of a third party, in the form an individual or institution, or so it seems to me. I have always taken the view that 1 Corinthians 7 v14, which indicates that the children of believers are "holy", is sufficient ground for assurance.

I have been challenged that such a stance "denies the sign" to the infant, a curious accusation. Yet it strikes me that Baptism does not make the child holy to the Lord but the parents faith does - in fact the rite is not mentioned in the Corinthian passage at all. In this circumstance I would not "deny" the parents the sign if that's what they want - but the sign of Baptism does not alter the childs status in God's sight one iota.

I suppose this begs the question as to who exactly is the sign aimed at? Is it for the infant's benefit, the parents', the Church's or God's? (And if you want to hedge your bets and say 'all of the above' we will need to unpick them individually!)

The use of the term Covenant in this context can be a bit confusing. God makes promises to mankind which can be called covenantal, fair enough. But sometimes the word does not mean a unilateral promise but implies a degree of conditionality - "I will do this, if you will do that..." So when the rite of Baptism is said to be 'covenantal' it raises some confusion, in my mind at least, as to what we are saying. Are we saying the infant's salvation turns on the rite of Baptism being performed correctly?

When I hear the word 'covenant' used in the context of Baptism it could mean (a) simply that the promise of salvation is to 'you and your children' [fair enough] or (b) the promise of salvation is to 'you and your children' on condition of Baptism. I personally do not find the use of this word in this context very helpful when it's meaning is left 'hanging in the air' unexplained.

Would I Baptise an infant 'in extremis' if asked to do so? Yes, if the parents affirmed their faith in Jesus. But the rite simply acknowledges a status which already exists, it does not move the child into a covenantal relationship with God, that would not be my 'requisite intention', a la Canon Law 861. The 'sign' - in such circumstances - may be a comfort to the parents in their loss and a witness to their faith in Christ for the on-looking public.

Single Pass Albumin Dialysis (SPAD).

A Father's Anger, Health Care Administration and the Philosophy of Science.

It is not unusual for parents of children in 'intensive care' to vent their anger and frustration on staff members. One accepts that people under stress can display the recognised signs of grief; "denial", "bargaining", "anger" and "acceptance". These signs are not confined to the bereaved but can also be manifested in those who grieve for their child's suffering. Thank God that the vast majority of kids on our unit do get better! Our mortality rate is about 4% which compares favourably with comparable units.

Of course, understanably, such statistics cut little ice with parents, for them a death is not a fraction it is the loss of a loved one and that is 100%. Even when seriously ill children recover it should not be inferred that the parents are unscathed psychologically; they still had the fear of loss to contend with. They may also be grieving for the 'loss of innocence' - not their child's neccesarily - but their own! People can have a rather 'Pollyannish' view of life which a visit to PICU rudely contradicts, it isn't surprising then that parents feel a deep sense of anger at society for having sold them a lie - that 'all is for the best in the best of all possible worlds'!

Recently one father had a 'go at me'. He could not comprehend 'how in this day and age' medical science had no clear cut answer to an issue he raised. He was quite angry about it and I listened - I hope with good grace - to his frustrations. Of course I had no answer to his technical question although I could have replied "do you really want to discuss The Philosophy of Science?" I suspected he did not. His frustration arose out of a misconception about science; in his worldview "science" was about concrete facts, settled knowledge which can be looked up in a text book. But the reality is "science" does not deal in such certainties, what Mankind "knows" is only ever provisional - we must constantly re-evaluate our knowledge and revise our practice in the light of new information. Medical science is no exception, especially when one is dealing with complex and dynamic disease processes.

Another naive idea which came to grief was his view, of what I will term, his "entitlement" within the UK's National Health Service. I suppose, again, I could have asked "do you really want to talk about 'Social Policy and Health Administration'?" I suspected he did not. He clearly felt that having paid more than his fair share in taxes he was entitled to more than he felt he was getting. I listened - again I hope with good grace - to his frustrations. The answer I could have given would have been inappropriate; 'however much you have paid in tax it is no where near enough! And I bet at the last election you didn't vote for higher taxation did you?!' The demand for all health care services way outstrips the supply and the electorate needs to wake up to that reality. The government is not some rich uncle who can dig ever deeper into his infinite pockets, it is the tax payer who funds the health service and in a world with 'third party payment' we can always be very generous with other people's money can't we? But we live in a democracy where politicians will promise more and more while the electorate is prepared to pay less and less. This irreconcilable conflict is taken out on the people who have to break the bad news to a naive public that the State cannot always provide what they demand and that is usually the same people who are haplessly trying to make the system work!

Western society has produced a generation with a profound sense of what life owes to them. People feel some sort of entitlement from life which is bolstered by our concepts of 'rights' - as if our 'rights' are absolute and written as immutable laws into the very fabric of the cosmos rather than relative and subject to the vagaries of humanity.

But, of course, I didn't say any of this. This father was grieving, but not for his child, who was ultimately discharged from our unit alive and well - he was grieving for the death of his naive worldview!

CHILD PROTECTION!

*

Today was a 'Team Away Day' mainly dedicated to a variety of mandatory training issues. We covered things like 'Infection Control' and 'Pain Control in the Paediatric Intensive Care Unit'.

*

We had a couple of major sessions on 'Child Protection'. One of the most distressing aspects of PICU is coping with the aftermath of a "non accidental injury". Sadly not all the kids make it!

7/7 Bombings.

Today is the fourth anniversary of the 7/7 Bombings in London in 2005. Three tube trains and a bus were bombed killing over 50 people.
I heard this on the news in the late morning of 7th July 2005 and phoned work saying that I was available if required.... I do have an 'Adult' qualification as well as 'Paediatric' and wondered if the PICU might have to act as an overflow from Adult ITU. I was asked to help cover the night shift - with the transport system closed down it was probably going to be impossible for a lot of our staff to physically get in to work anyway on PICU. I even volunteered to put up people from the day shift in our house if they couldn't get home.
As it turned out the transport system was up and running by evening, and everyone who was due in for work turned up. I wasn't actually needed. I went in anyway.
I never felt so proud to be a Londoner!

ADVANCED PAEDIATRIC LIFE SUPPORT.

I would describe APLS as a medical version of "The Crystal Maze". Imagine being ushered from one room to another with some life threatening scenario being laid out before you using a variety of mannikins and equipment.

Basic resus of infants and children are first covered and assessed. Then we moved on to the critically ill child. We coped with cardiac arrhythmias, shockable and non shockable rhythms, and defibrillation. Convulsing children, asthma, anaphylaxis, DKA and cardiogenic problems. And of course a variety of infective causes. Airway management skills are assessed.

The next day we looked at the critically injured child - head injuries, spinal injuries, penetrating chest and abdo wounds etc etc etc. Practical skills like chest drain insertion, surgical airway, emergency thoracocentisis and IO needle insertion.

The point is one expected to make a thorough assessment of the child, identify the problems and take effective action.

Today we had a final assessed scenario and an exam with an 80% pass mark. Anyway I'm pleased to report that I passed. I won't have to do APLS for another 4 years. Hurrah!

ADVANCED PAEDIATRIC LIFE SUPPORT!

I've been away on holiday for a couple of weeks and now I need to knuckle down and work through the APLS manual ready for the course next week at Guy's Hospital in order to renew my APLS certificate.

Peritoneal Dialysis.

During our 2008 trip to Nairobi on a Cardiac Surgery mission one of our post op children went into acute renal failure. I improvised a PD set, as well as made our own bicarbonate dialysis fluid. The advantage of taking a dinosaur like me along is that I remember how we used to have to do things twenty+ years ago!

Take a one litre bag of sterile 0.9% Saline for IV use and remove 350ml using an aseptic technique. Discard this 350ml.

Using an aseptic technique add the following to the remaining 650ml bag of 0.9% Saline; 300ml Glucose 5%, 10ml Glucose 50% and 40ml Sodium Bicarbonate.

Properties of this solution are as follows Sodium 140mmol/L, Glucose 2% and Bicarbonate 40%. PLEASE NOTE THIS SOLUTION CONTAINS NO POTASSIUM! Normally one would add 4mmol/L of Potassium Chloride depending on the patient's serum K+ level; however if the patient is hyperkalaemic use a reduced amount, eg if their potassium level is 5-7 add just 2mmol/L, and if the patient's level is >7 add no potassium to the solution.

Start with Fill Volumes of 10ml/kg. In over 5 minutes, dwell 10 min and drain over 15 min. And repeat the cycle. This will draw off some excess water as well as correct the patient's electrolytes and acidosis. Monitor patient's fluid balance and serum electrolytes regularly until the patient's kidneys recover. Until they do recover restrict the patient's fluid intake to 2ml/kg/hour if they weigh less than 10kg, and if they are upto 20kg give 1ml/kg/hour.

For larger patients give a maximum of 40ml/hr if they weigh more than 20kg (please note this is NOT 40ml/kg/hr but 40ml total volume per hour!)

More Training.


Today I completed my annual "Moving & Handling" mandatory training. And, as a special treat, we had a short session on the respirators we are being fitted with in case of pandemic Swine Flu. 3M Respirator type 7500 with p3 filters........................... so I'm okay!.........................

The Age of Aquarius!

Among the wide range of gadgets we use in PICU to help support the sick kids we have is this one. It is an "Aquarius" haemofilter produced by 'Edwards Lifesciences Services GMBH'. We use this for Continuous Venous Venous Haemofiltration (CVVH). We generally use this when the children are in acute renal failure and need excess fluid removing &/or their chemistry correcting. Occasionally we will have children who need a drug dialysing out.

In essence we draw blood out from the patient through a large intra-vascular catheter called a 'vascath' by means of the "blood pump" which is the red roller pump [top left]. The patient's blood is pre-diluted with a dialysis solution [Multi-Bic] drawn from a reservoir bag slung beneath the machine by the green pumps before entering the blood filter in the centre of the picture. Excess water is drawn out from the filter by the yellow pump into a waste bag also underneath the machine (not shown). The filter will also correct the patient's blood chemistry and pull out any other waste products too.

Depending on the size of the patient (and they can be infants all the way up to teenagers!) we will select the appropriate size filter and the various parameters for an effective treatment. This is programmed into the computer screen at the top of this picture.

Renal Replacement Therapies is one of my 'specialities'.

Return to Africa.

This coming May I will be returning to Nairobi with a team of people to do open heart surgery on children there. This will be my third such trip having been before in 2007 and 2008.

My role will be to help set up an improvised Paediatric Intensive Care Unit on ward 4b in the Kenyatta National Hospital and to care for children following their heart operation.

The picture above was of first impressions taken by me in 2007 when we very first arrived on the unit we were to use. The electric bar fire was an improvised attempt at an incubator! The hurricane lamp was the emergency lighting. The ventilators were pretty good though. The monitors were clunky old Hewlett Packard monitors which I recall using twenty years ago - they're outdated but effective. Lab facilities were pretty minimal so we had to rely on our own clinical judgment a lot. It was a real privilege to be part of this whole enterprise organised by MEAK (Medical & Educational Aid to Kenya).

During our time there we did over twenty operations. My proudest moment came last year when I improvised a means of giving peritoneal dialysis to one of our patients with my own homemade brew of dialysis fluid! He was very ill and went into acute renal failure. The advantage of taking a dinosaur like me along is that I remember how we used to have to do things here 15-20 years ago.

We fly out on 15th May and return on 24th. If I can I'll try and post a couple of blogs describing our adventure there - but the photos might have to wait until I'm back in the UK!

Philosophy of Care!

It is not unusual for our Paediatric Intensive Care Unit to receive patients from all over the UK, we are a centre for some highly specialised cardiac surgery, but we have just had a patient flown down to us with a relatively common cardiac condition called 'Transposition of the Great Arteries'; this tells us that (as at today's date) there are few childrens' intensive care beds available nationwide. There are other PICUs which were a lot closer! Certainly our unit has been horrendously busy in recent weeks and I'm sure we are not alone.

When I first started working in PICU, nearly two decades ago, I recall having a conversation with one of our consultant intensivists during which I suggested that a referal we had received could not be accepted because our unit was at capacity. He replied, "Peter, there isn't a 'St Elsewhere' for this kid!"

Up until that moment in time I had had the naive notion that the state would always provide. If we couldn't take this child then another unit somewhere else would. I had a vision of an all wise, monolithic system that planned and made provision for all eventualities. How wrong I was. No "system" works, not really.

In so far as any system functions; it is down to the good will of individual people. If individuals have a 'jobs-worth' approach to their work then no system will serve its intended purpose. I recall this same consultant having to battle the system to get our "Retrieval" service up and running; we had to start on a shoestring budget and prove that it served a purpose.

At the "Saline Nerve Child Hospital" our philosophy is always to try and make room for any child who needs intensive care - we will be loathe ever to say that "we have no beds" when the 'Emergency Bed Service' phones to ask what our 'bed state' is. We will bend over backwards to find a way of creating a bed for a child who needs PICU - it's a philosophy of care I feel comfortable with.

Children Die Too.



Last night I carried a two week old baby in my arms down to the mortuary. Statistically our PICU has a better than average mortality rate compared to similar units - about 4%; which isn't much of a comfort when its your child. For parents the loss is 100%.

Mandatory Training.

Although today is actually a day off for me I went into Guy's Hospital this morning for a lecture on "Mentorship". The Guy's site is closer to home than the other hospital where I actually work. (This picture is of the Colonnade at Guy's).

There are a variety of courses one is obliged to do over the year to keep up to date. Some of these; like 'Health & Safety' and 'Fire' are done as part of an online training programme. 'Moving & Handling' involves the practice of shifting people around. As that involves some familiarity with the gadgets we use these days we need to attend practical sessions for that. I'm up to date with my 'child protection' training. So I'm pretty much on track although later this year I have the joy of doing my "Advanced Paediatric Life Support" course again. Let me tell you about APLS.

Now that APLS is seriously scary! The last time I did it it was a three day course involving a relentless series of scenarios overseen by outside assessors. It's a bit like being on "Crystal Maze": you enter the room and someone gives you a brief synopsis of a child (in the form of a computerised manikin) about to be admitted; here's just one instance by way of example, 7 year old fallen from tree, no loss of consciousness but now deteriorating and you just enough time to calculate a few basic essentials like an estimated weight based on age and resuscitation drugs for that weight.... then Go! You have sole responsibility to guide your team; YOU make all the clinical decisions based on your own patient assessment. The assessors follow an algorithm and project details onto a monitor as your interventions alter the 'patients' vital signs. Head injury? Internal bleeding? Penetrating chest wound? I quickly worked out that it was the latter which required immediate treatment but it does not preclude any of the others on top of that does it? Broken leg can be temporised while we sort out the life threatening stuff. Oh yes, we have internal injuries too....oh joy!.....

I passed but even so I'm still traumatised from that last assessment!!!

Anyway today was a fairly gentle affair looking at the documenation and processes of mentoring student nurses who pass our way. We get students from Kings College and South Bank University and wider afield on a variety of courses. The Paediatric Intensive Care Unit (PICU) is a great learning opportunity for them and we are responsible for teaching them, helping them through this placement and assessing their competence to be registered nurses. But the bottom line is if someone isn't up to the job you have to fail them which is just as traumatic in it's own sweet way.......................