The sun, now it shines on the green fields of France,
There's a warm summer breeze that makes the red poppies dance;
And look how the sun shines from under the clouds,
There's no gas, no barbed wire, there's no gun firing now.
But here in this graveyard it's still no man's land,
The countless white crosses stand mute in the sand;
To man's blind indifference to his fellow man,
To a whole generation that were butchered and damned.

Did they beat the drum slowly, did they play the fife lowly
Did they sound the death march as they lowered you down?
Did the band play The Last Post in chorus,
Did the pipes play the Flowers of the Forest?


Ah, young Willie McBride, I can't help wonder why,
Do those that lie here know why did they die?
And did they believe when they answered the cause,
Did they really believe that this war would end wars?
Well, the sorrow, the suffering, the glory, the pain,
The killing and dying was all done in vain;
For, young Willie McBride, it all happened again,
And again and again and again and again..

First of all, apologies for the two week break. This has been partly due to my being away and partly due to the amount of background reading I had to do for this particular post. I've decided to split it into two parts; the background to the debate and the debate itself. So as the French say 'Nous revenons a nos muttons,' or 'let us return to our mutts..'

The food and fluids debate was by far the most heated part of the the MCA's passage. It concerned the re-classification of intravenous food and fluids as medical treatment as opposed to basic care. This meant that they could be given or removed as such. It also meant that there was a bias against provision of intravenous feeding; whereas a patient could insist on a drip being removed, they could not insist on a drip being inserted, because it was medical treatment and you cannot insist that a doctor provides a specific treatment. You can, however, insist on basic care.

Three high profile court cases provided the backdrop to the debate. The first was that of Tony Bland. Tony Bland was crushed in the crowd at Hillsborough and had been in PVS for four years. He was fed by intravenous drip. His family appealed to the High Court to allow them to remove the drips. The High Court agreed, but in its ruling it stated that the Bland case was not to set precedent and that any similar situations would have to be dealt with on a case by case basis by the High Court. After Bland, the High Court received a handful of these cases each year.

The second case was that of Leslie Burke. Leslie Burke has a condition known as cerebellar ataxia. When the condition becomes worse, Leslie Burke is likely to need hospitalisation and feeding by tube. Because of the Bland judgement, he decided to ask that he be guaranteed this when he could no longer help himself and could not express his wishes. He was told that he could not make such a request. Leslie Burke took the GMC to court and won; the Judge Justice Mumby ruled that not to provide the drips would be in breach of Articles 3 and 8 of the European Convention on Human Rights. These state;

ARTICLE 3

No one shall be subjected to torture or to inhuman or degrading treatment or punishment.

ARTICLE 8

1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.

The Secretary of State and the GMC both objected to the ruling. It was overturned on appeal, just after the MCA was passed.

The third court case was that of an autistic man known only as L, and Bournewood hospital. L had been at a day centre and had become agitated. He w taken to the hospital and given a sedative but grew more upset. He was finally admitted to the intensive behaviour unit for observation and treatment. The hospital could have formally sectioned him under mental health legislation, but it chose to admit him informally as he was compliant. The hospital then banned his carers from visiting L in case he left with them, and told them that they would release L when they saw fit. In September 1997 (L had been admitted in July 1997), L's cousin sought a judicial review of the situation on the grounds the detention was unlawful. L was finally returned to his carers in December.

This case was very significant for those with mental capacity problems, because it meant that some very common situations, such as elderly being admitted to nursing homes or those with learning disabilities being admitted for medical treatment could be seen as unlawful detention, and the treatment as assault. This became known as the 'Bournewood Gap'. The MCA was meant to resolve this issue and clarify protocols for this type of situation and it did make some attempt to do so, though not entirely successfully. But the relevance of this to the food and fluids debate was that since drips were to come under the 'medical treatment' banner, putting in a drip without consent could be construed as assault. So the three cases, Bland, Burke and Bournewood all had a hand in the shaping of the debate that followed.

Suppose for a moment that you are a judge. A man who has stolen a loaf is brought before you . It turns out that he stole the loaf because he was poor and had nothing to eat. You would probably let him go. But you wouldn't then go on to make a law to say that stealing was ok. There are lots of cases where stealing is just stealing. And you probably wouldn't go on to write into the law that if a person was poor, that they were to be acquitted. If you did that you would have to legislate for lots of other exceptions and the law would become confused and unclear on the matter. Instead, you might provide guidelines as to what is to be taken into consideration in judging someone, but you wouldn't give it a statutory force. After all, what is a judge and jury there for, but to use their common sense?

This is the essence of law making. It's about knowing what to bind and what to loose. Good law gets the balance right. Bad law gets the balance wrong. The Mental Capacity Act got it wrong when it made advance directives legally binding.

Why did the MCA make advance directives legally binding? It really goes back to what originally prompted the law. People lacking mental capacity have less choice than anyone else over their life. Their medication, their clothes, the place that they live, their finances; all these matters are organised through their carer and what they actually want can easily get lost. The MCA was meant to be a way of making sure that the person's choice was respected and so the MCA's five principles were as follows;

 

1.
A person must be assumed to have capacity unless it is established that they lack capacity.

 

2.
A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.

 

3.
A person is not to be treated as unable to make a decision merely because he makes an unwise decision.

 

4.
An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.

 

5.
Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

These seem a reasonably straightforward and laudable set of aims. They actually work quite well in everyday situations. But look what happens if you make advance directives legally binding. The balance between statement 3 and statement 4 is lost. The law becomes completely confused and it becomes impossible to make a decision based on it.

Then there's the bother of advance directives themselves. Now, most peoples' idea of an advance directive is a living will, carefully drawn up at leisure with witnesses in attendance. But an advance directive can be a suicide note, as Kerrie Wooltorton has just demonstrated. Or it can be a form that is handed to you as you're being wheeled into hospital with a stroke, stating that if you go into a coma, you don't want life sustaining treatment. Most people would sign that thinking that the hospital was referring to ventilators, whereas it also applies to intravenous drips. And this is where it all gets really messy. You have to start drawing up law for all the eventualities. For example, does the person really understand the implications of the directive? Do they know that they will not automatically be provided with an intravenous drip unless they specify it? If someone has a degenerative illness like Parkinsons and states they want treatment withdrawn when things get too much, and they don't keep their directive up to date, what do you do if a cure becomes available and they don't have the capacity to revoke their original directive? (This is entirely possible; there have been very promising results for Parkinsons in adult stem cell research in America and other single cell diseases like it). If a person can sign their name on the directive, does that mean they understand what they are signing? I can answer that one for you, because my mother signed up for a fitted kitchen when she was in the early stages of Alzheimers despite being too old to be granted a loan and despite the price being ridiculous. Only the fact that my sister was a lawyer and that we acted very quickly, saved her from losing a whole lot of money. The MCA does try to address some of these dilemmas but the bottom line is that it can't be policed. If something goes wrong with a directive, you can't override. It's got to go to court and there isn't always the time to do that.

If you make the advance directive advisory, all the confusion goes away. A doctor can use their discretion. If someone like Kerrie Wooltorton comes in, they can give treatment. If there's a relative hanging about looking for money and it's their signature as witness on the directive, they can ignore it. If it's someone desperately ill from cancer, they can treat palliatively but not aggressively. But make it legally binding and all discretion goes out of the window. It doesn't increase choice; it actually makes choice impossible.

Two years before the MCA started its passage, Scotland had already updated its law on this subject with the Adults with Incapacity Act. I'll say more about this, but in Scotland, advance directives are still advisory. And the law is much better for it.