In Loco Parentis – the terrifying tale of Charlie Gard

In Loco Parentis – the terrifying tale of Charlie Gard

As a doctor I have found the unfolding tragedy befalling Charlie Gard and his family extremely upsetting to follow.  This poor boy and his family are butterflies being crushed on a wheel to press home a legal point, they are unfortunates being punished having committed no crime.

Let us firstly be clear what this case is not about. Despite protestations to the contrary this case is not about the best interests of Charlie Gard. The best interests of the child (1)  are clearly important and made paramount both in the UN Convention of the Rights of the Child (2) and in British Law with the Children Act of 1989 (3) . It is clear that all the parties involved in this debate are acting because they have the best interests of Charlie at heart. The doctors and hospital feel that they, by virtue of their knowledge, know what is best to do. His parents, through love and affection, also believe that they can see the best plan and hope for their son. Both are acting in the best interests of Charlie, this is not the problem. The problem is who decides what exactly are Charlie’s  best interests.

It has always been the case that the parents of the child decide what is in the best interest of the child. This is as it should be as it reflects the natural law and ensures that the people most attached to the child’s interest are those who act as the child’s guardian. There are very few circumstances when this can be changed and they depend upon proving that the parent is being either negligent or malevolent. Neither of these factors are in play here and, if anything, the parents have taken extraordinary steps to secure chances for their child, well over and above what many parents would have been able to do.

It is interesting that, at the 24th hour, Great Ormond Street Hospital has made an application to court to revise its plans (4) possibly starting to realise that the parents’ opinion may have been closer to Charlie’s best interests, than had their own opinion been. So in this difficult calculus of what is the best plan of action it appears that Charlie’s parents may have been the better judge all along.

While these arguments over the ‘best interests’ may mean that the parent disagrees with the medical team it does not mean that the parent can compel a doctor to do something they feel is inappropriate or wrong. But again this is not the case in this situation. Charlie’s parents have never asked GOSH or the NHS to undertake treatments they do no agree with. They have gathered together sufficient resources to enable Charlie to receive this treatment by doctors who believe it is, worth a trial, in the child’s interests. This should have been the end of the dispute. Charlie and his parents should have used their money to go and try this last ditch attempt, to catch this glimmer of hope.

GOSH and its staff, however, stopped this. Their court battle stopped the treatment and refused the parents the ability to move their child. In their paternalism they not only refused to help but also stopped anyone else helping. The thousands of people who collected money to help Charlie were thwarted by this as well as Charlie’s parents and the other hospitals and doctors who wanted to help.

I am a very old-fashioned doctor and I don’t fear paternalism per se. A desire to act like a father, is a a desire to be benevolent, guiding, helpful and wise. In itself not a bad thing. It becomes bad when it belittles another party and reduces their agency. When doctors worked in a professional relationship with their patients, the doctor’s paternalism would drive them to seek the best for their patient and was usually leavened by respect for the patient’s autonomy. This combination could be valuable when there were difficult scenarios – when the future was unpredictable and  the efficacy of plans of action difficult to assess. Much of the placebo effect of medical intervention depends on this aspect of the relationship and large parts of the benefit of of healthcare comes from this caring, guiding, advisory aspect of medical care.

There was always one very good safeguard against this paternalism becoming intrusive or  belittling, when the relationship was between doctor and patient, the patient could always terminate the relationship. If they felt that the doctor’s approach was wrong they had no need to continue to use them. This was a way to safeguard the patient and also a way in which the doctor would know that they had overstepped the boundaries and they could learn where paternalism started to erode patient autonomy. But in the NHS this is difficult. The patient can’t change their doctor without a great deal of difficulty. If they change they will probably be labelled a “difficult patient” which might mar relations with their next medical practitioner.

In addition, under the NHS the patient is no longer the employer of the doctor in the UK. The most important relationship for the doctor is the one with his employer – the state, the NHS – not the the patient directly. It is the state who pays his wages, sets his targets and assesses his performance and we know “he who pays the piper calls the tune“. In this scenario paternalism is largely unchecked and can be very dangerous. Paternalism, appearing kindly and wise, can mask actions that are not in an individual patient’s best interest. Rationing and refusal of therapy is hidden as medical advice and choices are withdrawn from the patient. Doctors often find, when working in the NHS, that their attempts to maintain professional standards and a focus on their relationship with the patient can cause them difficulties. They are made to feel as if they are being disruptive when they call for what is appropriate for the patient. They can be told they are jeopardising the budgets, failing to be a team player by not following the organisation’s line, and generally made to feel awkward if they behave in a manner that was formed by their vocation and training.

In this case paternalism seems to be being employed to sweeten a bitter pill. The state wants to end Charlie Gard’s life before all options that are available have been tried. Despite having seen parents act heroically and selflessly for their child, without an ounce of malice, they would prefer Charlie died rather than allowing the parents to try all they can do. But rather than admit this we are told that they are the wise and kindly people who know what they are doing, we are awkward and unruly children causing a fuss.

Well thank God for the fuss that Charlie’s parents have made;  it may not save Charlie but they will have opened the eyes of many people and might save future families from the horror that they have had to endure. They truly are a heroic family who deserve our support (5)

 

 

 

 


[1] https://en.wikipedia.org/wiki/Best_interests

[2] https://en.wikipedia.org/wiki/Convention_on_the_Rights_of_the_Child

[3] https://www.publications.parliament.uk/pa/cm201012/cmselect/cmjust/518/51807.htm

[4] http://www.telegraph.co.uk/news/2017/07/07/hope-charlie-gard-great-ormond-street-seeks-explore-new-evidence/

[5] http://www.charliesfight.org/

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Snack Music

Snack Music

A few years ago I was diagnosed as having Type II Diabetes. It was quite a shock as I hadn’t felt unwell and had not realised just how bad my diet was.  In the first year I used a low carb/high fat diet to get my weight normal and to be able to stop taking medication. Since then I have paid better attention to my diet and started to exercise regularly, I have stayed off medication, my blood pressure and lipid levels  are better than when I was a younger man and I am fitter. I also feel fitter and stronger.

When I look back to see what I had done wrong to end up in this state, it was clear that snack food had been my downfall. Looking back it was obvious quick, easy to eat, high carbohydrate treats had taken over my diet.  Snacks had done it; a sandwich, a cake, a pie, a biscuit, a sausage roll .. there were many ways I could snack instead of eating regularly. I had developed a bad habit of eating easy food with a quick reward. There was no need for preparation, little need for thought, just eat and go.

Over the years this had done considerable damage to my body. I was three stones overweight, no amount of leaving my shirt outside my trousers could hide my belly, I could not run, and eventually my body started to fail. Fortunately I started to have to get up at night to pee and thinking I might have the other old man’s friend (prostate problems) I saw the doctor who, alarmed at the high levels of my blood sugar, started medication immediately.

I use the word “fortunately” as I am glad I found out the damage I was doing to myself before discovering it, too late,  after a heart attack, an amputated foot or after going blind. I have turned some things around and hopefully reduced my risks somewhat. But I was clear that snacks had been my downfall, they had messed up my diet and consequently messed up me.

However, recently I have been trying to learn from my mistakes. If I did this much damage unwittingly, what other damage might I be doing ? Are there other dangerous snacks I have been overeating ?

I realised that in cultural terms I was wreaking similar damage in other areas by snacking. I decided to tackle these problems also before they started to cause problems or disability. I have started first with music. I was aware that over the years I have started to prefer small, easily digestible pieces of music; pieces of music that require little thought or attention and which catch you quickly and satisfy instantly. I prefered the snacks of the musicalworld.

I had been led to this by the mp3 and the download. Rather than listen to a concert or an LP I would listen to a single track. Instead of listening to the whole opera I’d listen to the popular aria made famous recently by its use in an advertisment. I noted that my musical tastes have been coarsened and  are now much more reliant of rhythm and beat – the quick hit, the ‘carbs’ of the music world. I noticed also that often I was guided to music by the accompanying video which makes the emotional impact much more effective while, at the same time, taking away the need to think and consider. I think it is no surpise that the videos are becoming more important as it is not really the music that is being sold now. It is the quick snack, the fast food of the music world, rather than a balanced healthy diet.

I’m starting to see results. This morning was improved by listening to “A night on bald Mountain” and last night was spent in the company of the Dance Macabre  of Camille Saint-Saens. This has been much better for my health and soul than my previous diet and hopefully, over time, I’ll see similar amounts of improvement. Certainly I feel better and I am also much more aware of what I consume musically and that, in itself, is not a bad thing.


Night on Bald Mountain

Dance Macabre


via Daily Prompt: Snack

Volunteering : Why do we do it ?

Volunteering : Why do we do it ?

via Daily Prompt: Volunteer

When I moved to my present home, and shifted from an urban to a rural community, I became more aware of the role that volunteering played in my and my neighbours’ lives. It is not that there is any more or less volunteering in either site but rather that the structures of community organisations, and the role these play in day to day life, are much more visible in the rural setting. It is easier to see what is going on among a few people than it is amongst very large groups.

It is clear that many people volunteer regularly to provide services to our own community and for those further afield who are in need. Obviously, as this is volunteering, it is done with no thought of payment or recompense. Indeed, the cost to volunteers in terms of  time, money, and energy is often quite considerable.  For example, one neighbour drives daily to the old peoples’ home at her own expense and spends an hour talking to elderly people who might otherwise be lonely.

So why do we do this ? Some, of a religious bent, may do it as it is part of their way of practising their faith. Other may do it in recognition or thanks of previous help given. However, looking at my friends I’d suggest that most do it because they gain pleasure from helping others. In addition to pleasure it is also part of living, being a part of a community rather than a simple consumer of the benefits of society.

Every second week in our village hall committee we meet and spend hours organising events for the community and seeing to the logistics of running various societies which have their base in our society. When we meet and talk, when we interact and exchange ideas, when we choose form options for our society, we are in fact living. While we do this we are more than individual consumers, we are not solitary agents but social beings, and while we take part like this our lives become richer and fuller.

Possibly the most quoted sentence by Adam Smith  is this below :-

It is not from the benevolence of the butcher, the brewer, or the baker that we expect our dinner, but from their regard to their own interest.

and many people think that this suggests that selfishness was the sole key to the organisation of capitalist societies. Many portray capitalism as incompatible with altruistic actions and see the  phrase “greed is good” as one which summarises a trading society.  Many libertarians do little to counter this image.

While it is true that self-interest guides the many voluntary trades that people make everyday which allow our society to develop and grow. It is these multiple interactions  which allow us to concentrate on what we are good at, to specialise and divide labour, and to create things that would otherwise be impossible. It is through all these voluntary transactions that the spontaneous order arises which makes up our society. Billions of individuals freely interacting with billions of others give rise to the order which is the society in which we live. While this requires that the individuals look after their own interests it works because we are human and there is another side to our nature.

Unfortunately the following quote, which is the first sentence of Adam Smith’s “The Theory of Moral Sentiments” is much less frequently quoted :-

“No matter how selfish we suppose man to be, there is obviously something in his nature that makes him interested in the fortunes of others and makes their happiness necessary to him, even if he derives nothing from it other than the pleasure of seeing it”

Adam Smith believed that innately we wish to help our fellow man. Indeed he believed that the pinnacle of moral development would be “To feel much for others and little for ourselves; to restrain our selfishness and exercise our benevolent affections, constitute the perfection of human nature”. He correctly recognised it was the combination of voluntary transactions, guided by self-interest, in association with an innate tendency to care for the welfare of others which allowed capitalism to thrive and develop.

It is this innate desire to help others alongside the gaining of pleasure by doing so that I see in my community here. I am aware that this is a universal aspect of human nature seen in people from all walks of life and in all areas of the globe. It doesn’t detract from the wealth creation of trading but rather augments it as it is the glue that creates the society in which we can pursue our dreams. I am sitting using a computer and social media to create this blog, this is just one example of the multitude of sites (Flickr, Youtube, Facebook,  Freecycle, Twitter, etc) where people create things (images, stories, songs, news, goods) simply to share with our fellows with no expectation of profit. It seems further evidence of our need to share and to give.

However, I do have some concerns that the last century has seen a change in how we view such activities as volunteering and charity. Alongside the growth of the welfare state it is possible that we have started to feel that we no longer need to undertake these activities.  Certainly the amount we give to charity has dropped from an average 10% of a middle class family’s income in  1895 to around 1% today. Friendly societies which used to provide much of the welfare that people received prior to the war when it was estimated that over three-quarters of the working population were registered with such a society were destroyed by the introduction of National Insurance. A model which was based on local planning, voluntary choice and democratic decisions when local people got together to form groups to look after themselves was swept away by Lloyd George’s changes. In their place, an unaccountable, impersonal and inefficient centrally organised state system took over.

The change to state organisation funded by taxation has had a further change which has an impact on charitable activities. As James Bartholomew said “People have changed from being team members in mutual support groups to being state dependants who feel no particular responsibility to act decently. “. It is important to feel that one is helping others, as said before it is an innate desire and part of what lifts us above other species of animal. When we organise our welfare services by taxation it removes us as individuals from the care of our neighbours. It becomes anonymous and faceless, it breaks the link between the two individuals helping each other. It removes our option to be compassionate and good as we can’t really think of ourselves as good when we have no choice over our actions.

We will always need to provide welfare for our societies and will always want to do so. We need to encourage voluntary arrangements which allow this to be done in a human, individual and engaged manner and we need to wrest welfare back from the state. We need to bring it back from the central state and back to local societies and the individuals amongst them

I think Dominic Frisby summarised this well in his “Life after the State” :-

“The giver goes unconsidered in the process of state care. Taxes are taken and that is it. But the giver too has needs. Sometimes the giver needs to be anonymous – sometimes he needs recognition. Sometimes he or she likes to be involved with the recipient in some way, sometimes not. The forced giving that is taxation destroys the satisfaction that altruistic people get from giving voluntarily. To share with others is part of humanity. In a world in which the government takes care of the poor and needy, compassion is removed from life. As a result, the state now has a monopoly on compassion! In fact it is even more bizarrely specific than that: the pro-welfare left wing has a monopoly on compassion. Anyone who doesn’t agree with the concept of a large, generous welfare state is deemed heartless and selfish.”


Volunteer


Wealth of Nations
Theory of Moral Sentiments
The Welfare State we are In
Life after the State
David Green, Working-class Patients and the Medical Establishment (Gower, 1985).