Binding and Loosing -Advance Directives and the Mental Capacity Act

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.

The Trojan Horse

Politicians have a number of ways of getting tricky legislation through. One method is to pass it just before Christmas or the summer recess, when noone's paying attention. Another is to couch the bill in obscure language that lasts for fifty pages and put the important bit somewhere in the middle where it won't be noticed. But by far the favourite method of passing controversial legislation is the Trojan horse method. You take an issue that everyone agrees on, and form a bill round it. Then you add on the legislation that you want to pass. People are then torn between voting on the part in the bill that they like, and the part that they don't like. Classic examples of the Trojan horse are the Tobacco and Primary Medical Services Act (Scotland) which introduced measures to prevent the sale of tobacco to minors, but also allowed GP services to be run by private companies; the Legislation and Regulatory Reform Act 2006 which became known as 'the abolition of Parliament act' for the draconian powers that it granted to the cabinet in an 'emergency; and the Mental Capacity Act itself, which was meant to provide a Court of Protection and an independent advocacy service for the mentally incapacitated, but ended up taking their rights away.

The original motivation of this bill was picking up on a previous bill that was championed by the MP Tom Clarke to provide an advocacy service for the mentally incapacitated. This bill went through Parliament in the Thatcher years, and an advocacy service was agreed to in principle, but with the caveat 'when costs allow'. Of course, the government decided that costs didn't allow them to set this up and so it sank without trace. But the other motivation was the Tony Bland case. Tony Bland was a football supporter who was crushed in the crowd at Hillsborough. He spent four years in PVS (permanant vegetative state) and his family went to the High Court to get his feeding drips removed, so that he could die.The judge ruled in their favour but made it clear that it was not to set a precedent for case law and any other cases of this nature had to go to court to be decided. These cases were relatively few; there were two or three applications each year to the High Court on these matters, but the Tony Bland case became the second driver for the more controversial stuff that was put in the MCA. These were;

1.) Making advance directives legally binding;
2) Re-classifying food and fluids provided by intravenous means, as medical treatment as opposed to basic care;
3.) 'Best interests' legislation which allowed death as one option to be considered;
4.) One that people haven't really picked up on yet; non -therapeutic medical research on the mentally incapacitated.

The Mental Capacity Bill (or the mental incapacity bill as it was known until the last year of its progress) was a long time in preparation. It was fifteen years in the writing before it finally started its journey through the various stages in Westminster. The person charged with steering it was David Lammy. David Lammy(pictured) is MP for Tottenham and was a rising star. He was the first British black to study law at Harvard. At this point he was Minister for Constitutional Affairs and this bill was a chance to prove himself. Backing him were an alliance of charities who had been involved in the consultation process of the bill and who desperately wanted the advocacy service. Those opposing were mainly church groups and the Parliamentary Pro Life Group whose main speakers were Jim Dobbin, Ann Widdecombe and Lord Brennan. So the stage was set for the debate and what a debate it turned out to be.

PS For the witches amongst us, David Lammy has a connection to DEMOS..

The Mental Capacity Act and Me

October is something of a reflective month for me. It's the time when I cut back the trees and bushes in the garden, tie up the branches and take them to the dump. I clear out all the rubbish that's gathered in the house. I get things mended, get the boiler checked and batten down the hatches for winter. And it's the time when I also look back at what has happened and assess where I've been going, and more importantly, where I'm going to end up.

This October has been more thoughtful than usual. It's now four years since the Mental Capacity Act was passed and the case of Kerrie Wooltorton has brought it to the fore. The MCA was a bill with significance for me, because it was the first time that I got seriously involved in politics. It changed my life and changed me. Although I had already looked after my mum for some time before this bill started its journey through Parliament in 2002, this was the point that I actually truly became a carer, because it was the point when I started to really care.

One of the advantages (if you can call it that) of looking after someone vulnerable for so long, is that you see the system as it actually is. Most peoples' experience of tertiary care is mercifully short; it will be a few weeks or months at the end of a relatives' life. That means that they don't get to know how it works and what the dangers are in that system. And that explains the total chasm in understanding between them and someone like myself, who has had to deal with it for twelve years. That is why, when I saw the mental incapacity bill, I nearly went off my head and other people could not see the danger. And that is why, four years from it being passed, we are sitting saying 'What happened? We didn't mean it to work like this!'

In the next few posts, I'm going to explain what went wrong and how we got there.

Proof of the Pudding?

About a year and a half ago, a good friend of mine introduced me to the wonderful website Cakewrecks. Cakewrecks is the kind of eccentric gem that only the blogosphere can throw up and whenever I'm feeling a bit down, I click on the site. It never fails to leave me in fits of laughter. Now we have an NHS equivalent. Step forward, Traction Man (well, metaphorically at least, cos you're in traction) of the wonderful 'Notes from a Hospital Bed'. Traction Man is - well, in traction in a hospital somewhere. He is taking pictures of his hospital food, posting them on a blog and inviting people to guess what it is. The most puzzling one so far has been the vegetable moussaka above; noone was able to guess what it was.

What I found hilariously funny about this site is that it illustrates perfectly the old unwritten British rules about cuisine. It harks back to a time when spaghetti bolognaise was completely off limits and you could only buy one kind of lettuce at the Co-op. Rules like;

1. Colour. Safe foods are yellow, green or off white in colour. Custard, peas, greasy chips are all acceptable; bolognaise and chicken chasseur are not.

2. Vegetables should either be carrots or peas. Other vegetables should not be present on a plate unless they are covered in a cheese sauce or mashed.

3. Meat should be either brown or white in colour. It should not be pink in the middle; it's not decent.

4. The only sauce that should be put on meat is gravy. Meat should be able to stand on its own two feet. If it needs a sauce, it's probably off.

5.Meat and vegetables should not be allowed to mix. They should stand politely to next other on a plate. Cooking meat and vegetables together in the continental practice of casseroles is to be frowned on and not encouraged. Potatoes can be placed on top of meat, but again not mixed through.

6. Mushrooms are permitted if they are cooked until grey. Mushrooms that are still white are not permitted.

7. Processed peas are good; garden peas are suspiciously middle class; haricot verts
is what you get when a bunch of lazy French can't be bothered shelling the peas.

8. Foods ending in 'i' or 'a' should be avoided.

9. Macaroni cheese is an exception to '8'; its yellow and gloopy status classifies it as a British dish and fulfills equality, diversity and ethnicity regulations re food.

10. Potatoes should always be present on a dish. In the unfortunate event of a dish being a pasta dish (see '8') mashed potato should be added to neutralise it.

Do have a look at this blog. And support this guy; laughs apart, he might just get something done about nutrition in the NHS. If they don't get him first..

If it was a Crime to be Conservative, would You be Convicted?

For those of you who have been living on Mars for the past year (or outside the UK) there is an election coming up. It's time for parties to polish up their policies and put their wares on display. As such, I thought it was time to examine Conservative policy and provide the following quiz; if it was a crime to be Conservative, would you be convicted?

1. You have inherited a multi million pound business from your father. On examination of the accounts, you find that the cost of administration has doubled from 6% to 12% over the past fifteen years. This can be traced back to a change your father made in bookkeeping, where he required the individual account of every customer to go through the main office instead of each office keeping its own accounts and reporting back. Your main rivals in Scotland rely on each office to keep its own accounts and its admin costs are 5%. Do you;

A)change over to the system your rival uses;
B) stick with the status quo?

2. You have a waiting list of customers that you cannot deal with alone. You decide to sub-contract work to another firm and pay them £15 million in advance for a five year contract. After you have signed the contract, the company come back and say that they can only do half of the work involved, due to health and safety issues, but the contract means that they keep the £15 million. Do you;

A) Consult your lawyers about possible breach of contract, sue the idiot who drew up the contract, and never do business with sub-contracted company again;
B) Shrug your shoulders, pay out the £15 million, and recommend this as a way of doing business?


3. You have an in-house cleaning team who are slightly more expensive than another company. You hire the new company, only to find that they will not clean the toilets, because their contract does not include cleaning up bodily fluids. Do you;

A) bring your old team back and tell the others to take a hike;
B) get some of your office staff to assume toilet cleaning duties in addition to their own work?


4. You want to build a dividing wall in one of your offices. Do you

A) Get a couple of quotes from local builders, take the lowest one and build it;
B) Take out an advert in the European journal?


5. A light switch is not working in your office and requires an electrician. You go to a local electrician, who, on hearing the location, tells you that he will have to charge you £300 for the job because it's in the contract tied to the building. Do you;

A)Accuse the business consortia that drew up the contract, of profiteering and hire another electrician;
B) shrug your shoulders and pay out?

6. You want to build a new office. You go to a group of lenders who borrow money on your behalf from the bank and they charge you a lending rate of 20% on the money. Two years later, you find that the bank has lowered its lending rate to 15% and the lenders have re-financed your deal, but they are still charging you 20% interest. Do you;

A)attempt to negotiate for some of the refinanced money;
B) sit back and let them pocket it all?

7. Some of your skilled workers have recently been unavailable for overtime. You find out that this is because they are moonlighting for another company. Do you;

A) Warn them that if they keep this up, you'll sack them;
B) Invite their company to take over part of your premises and allow your workers to prioritise their customers at the expense of your own?

8. The government decides to introduce a new tax for business that charges you 4% of the value of your land and property. This is a particular problem for your city offices where the land is much more valuable. Do you;

A)unite with other businesses to protest at this new and unnecessary tax that is forcing you to downsize;
B) close all your city offices and move into the country?

So how did you do? Well the good news is, that if you voted 'A' on all those questions you would not be convicted as a Tory. You would be handed the key to the cell and walk out the front door of the jail to a car with its engine running and a bottle of bubbly.Now I bet all you rank and file Tories are scratching your heads. Because 'A' is the answer that you would give to all these questions. Because they make good business sense. Because the market is about competition, minimum cost and minimum waste and providing a good service to customers. No one in their right mind would answer 'B' to any of those questions.

Except- that that is precisely what the Conservative Party has answered on all of those questions. The above are all true life scenarios from the NHS. They are all examples of how a small number of private companies have taken the NHS for a ride and pocketed its money. Private companies that are being supported by the Conservatives and Labour. They are not business men. They are profiteers. Normal business men understand the difference. And this is what I do not understand-why the hell is any self respecting Tory supporting this? If you are a Tory, you believe in the market. You believe that you should get good value for money, that things should be run efficiently without waste. Why do you not chuck these guys out on their neck? What sensible business man would deal with people like this and allow them to take him for a ride? Has the Tory party gone mad?

I know very little about the Conservative party, so I don't know how much of a split there is between the leaders and the rank and file. But if I were a Tory I would ask why my party was supporting policies that went against all sensible business practice. And why they were supporting the kind of cads,bounders and shocking bad hats that your old Tory grandee would not have put in charge of a farthing of the public money, let alone £75 billion.

The Tory party is meant to be the party of thrift and business. If you as a Tory believe this, truly believe this, then you must believe in getting rid of these companies. And if David Cameron wants to put some clear blue water between himself and Nu Labour he could do it by promising to get rid of all these leeches. Then a few of us who aren't Tories might vote for him. And even end up in jail for it.



PS the examples in order are;

1. The introduction of fundholding and the purchaser/provider split;
2. The independent sector treatment centre Stracathro;
3. The situation with most hospitals re cleaning; nurses have to do the cleaning of any bodily fluids, because the cleaners won't do it. Which is pretty useless in a hospital.
4. Most contracting work now has to be put out to tender in the European journal. This example comes from 'Can Gerry Robinson Save the NHS?'. They wanted to build a dividing wall to divide one operating theatre into two. They were going to have to advertise in the European journal. It was at this point Gerry Robinson decided he couldn't save the NHS..
5. Hospitals built under PFI are usually tied in to particular contractors. They charge inordinate amounts for maintenance work.
6. Again a feature of PFI. The consortia that borrow money on the NHS's behalf make millions through re-financing. The government tried to bring in a voluntary code where 30% of profits from re-financing would be given back, but it has been largely ignored.
7. This is the practice of consultants treating private patients ahead of ordinary NHS ones. In NHS hospitals..

8. This refers to the capital charge, a tax of 4% on land and property owned by the NHS. This has been a really big problem for the London hospitals, where the value of land has shot up. Hospitals are now being shut in cities and moved out to the country where the value of land is less. Which is bad news for city dwellers.

The Sick Man is Getting Better - Scotland's Health Improves

Now, I don't want to be cynical, but is it a coincidence that these figures have been released in Scotland, just a few days after the BMA called for action on alcohol advertising?

New figures published yesterday show 12,770 deaths were registered from April to June this year, a drop of 5.4 per cent compared to 2008.According to the General Register Office for Scotland, that was the lowest total recorded for “at least” 30 years, and just over 3,000 less than the same period in 1979.

And the number of Scots falling victim to the “Big Three” killers has shown a drop compared to last year.

Heart disease deaths fell by nearly 11 per cent, stroke deaths by almost seven per cent, and there was a 0.6 per cent decline in the number of people dying from cancer.


Scottish Daily Express

Well, maybe it is too much of a coincidence. But it's a very welcome one. Big government went out of favour in the eighties, but these figures would suggest the smoking ban is working and that there is a place for the 'nanny state'. Perhaps we should be less afraid of being censorious in our attitude to smoking and drinking. Break out the Schloer..

Disappearing Headlines - the Elderly Care Cover Up

Yesterday, I was going through the BBC health RSS feed. Near the top was a report that in an honesty test, 58% of people thought it was ok for a care home nurse to persuade an elderly person to change the will in the carer's favour. The story was headlined with this statistic. I was going to do a post on it and then I was distracted. Some hours later, I came back to the feed and at first I couldn't find the story. That was because it was now headed, 'Women judge, but do they convict?' Today, I went back and found that the story was 21st on the RSS list, way below older articles on swine flu and others.

It's not the first time that this has happened with the Beeb. The Stafford story disappeared off the radar after two days. This story about people with learning disabilities being starved to death, was mentioned first in a news trailer and reported on third. Now this. I note it's also well below the article on assisted suicide; wouldn't want anyone to make a connection between changing wills and helping the old dears on to inherit, would we?

I don't know what's more shocking to me. The fact that nearly two thirds of people think it's ok to swindle an old lady, or the fact that somebody very well connected seems to be leaning on the Beeb to cover it up. The older I get, the more I understand the function of the court oath,' The truth, the whole truth and nothing but the truth'. To be dishonest you don't actually have to lie. It's enough to change a headline or move a story down the RSS list. This is one honesty test that the Beeb has failed miserably.