Consent to Waltz, Capacity to Tango, Connect to..

RxISK’s posts on consent start way back even before We have a Dream – Getting Engaged to a Doctor or You’ll Come a Taltzing Matilda with Me. There’s the recent Challenging my Doctor to Disclose or Challenging a Juggernaut and above all Guilty until Proven Innocent.

Why another?  Read on to find out about Connecting.

When is Consent Consent

The notion that medical treatment should require informed consent was born in the 1950s and 1960s in struggles over treatments for breast cancer and ECT.  People facing treatments had begun to do their own research and realized there were options in either case – did they have to take the only option their doctor was offering them?

Up till then doctors informed patients in order to get them to better comply with what the doctor thought was right for them – which he likely thought was right for everyone with breast cancer or mental illness, even though other doctors might not agree. The idea that people who had no medical training or medical experience might have a say in their treatment seemed a contradiction in terms to most doctors,

The courts cautiously opted to validate patient views. These could be overruled using Mental Health Acts.  Legal caution was likely based on a sense that the precedent applied to one profession – Medicine – today might apply to another – Law – tomorrow.

The idea that if a patient was not so debilitated by an illness they had lost the capacity to consent, they should be given a say in their treatment gradually crept in.

This informed consent was somewhat contradicted by the Bolam Ruling (UK version) from 70 years ago. Bolam means that for decades doctors could not be found negligent for the treatment they gave us, even if things did not turn out well, if a responsible body of medical opinion (10% of doctors) would have recommended the same treatment in similar circumstances.

A Montgomery Ruling (also UK), viewed as updating Bolam negligence, is billed as supposedly shifting the dial further from medical paternalism to patient autonomy and as ‘progress’.  How could this not be progress?

Capacity

Consent might seem obvious but what is capacity to consent?

If a person is going to consent to a treatment or to plead Guilty or Not Guilty in a legal setting, they have to have the capacity to do so. This means they are not confused, not disoriented, know the time of day and day of the week, can understand treatment or legal points and can make decisions. If able to do that, it is assumed they have the capacity to plead or decide on a treatment option, even if their decision seems unwise to their lawyer or doctor.

This might sound reasonable.  We don’t want to interfere with patient autonomy or Free Will.  But it’s less reasonable than it sounds. It can be disastrous when built into Treatment Pathways which as AI will tell you are:

step-by-step roadmaps that outline the best way to care for you… act like a recipe book for healthcare teams, and ensure no matter which doctor or hospital you visit, you receive the safest, most effective, and most consistent care possible

Capacity to choose, like the capacity to ski or dance is learnt. We may be in good health but letting us loose on a ski-slope for the first time may be a recipe for disaster even if we are willing, and even if a Pathway is marked on the slope.

We develop a capacity to ski, or dance.  With time we can reach a point where we can be let loose on a ski slope and know what we are capable of and with practice can make better – or we can decide we dislike it so much we will never go near a ski-slope again.

It is the same with medication.  We can be told everything in the abstract about these drugs, all the things that could possibly happen and how to respond but this as useful as being told how to ride a bike and respond when you wobble. See Riding a Bike Backwards and Riding a Backwards Bike.

You don’t need to know everything about a drug any more than knowing all about bikes. You need to know what the drug does to you in order to decide if this is an option for you.  What it does for you might be exactly the opposite to what it does for me.

How then do you get to capacity?  Ideally a doctor would tell you what s/he wants the drug to do for you – if s/he can’t do that s/he shouldn’t be giving that drug.  One rule to this game is s/he can’t just say I want this drug to make you better.  S/he must specify exactly what the drug will do that might help you get to better.  This holds true for almost all drugs – almost none of them simply make you better. They do something useful, which might or might not help.

An SSRI, for instance, can make you serene. This should be apparent within 48 hours or so. This Zen in Pill form is what may be helpful – may be a therapeutic principle. See Good Trips on SSRIs.

The doctor can also give you a list of problems – which is what most of us think of when we hear the words informed consent. Like biking, or dancing for the first time – no more use than a woman being told all about men…

“A woman needs a man like a fish needs a bicycle.”

S/he should prescribe a low dose – absolutely no more than the equivalent of 5 mg of citalopram or 10 mg sertraline, possibly only half of that, and ask you to take it for perhaps 3 to 4 days aimed at gauging whether it makes you feel serene. And what else it does.

You should be told that family and friends may spot things you don’t spot and they know you better than the doctor ever will, so you’d appreciate their views. You do not want their views on the drug because they might have reacted poorly or well to it, or they may dislike the idea of drugs. You want their observations (views) of what they spot in you.

After 3-4 days you should stop whatever it is (except some short courses of an antibiotic – stop fluoroquinolones immediately if you feel odd) and then be seen again by the doctor a week after starting.  Why stop? Because the contrast between being on the drug and then off may tell you more about what it was doing to you as going on it in the first place told you.

The key SSRI questions are did it make you serene and would you find this effect helpful? If it didn’t make you serene by day 3 or 4, or this effect might have been there but was not for you, there is no point in taking a chance with almost certain problems, some of which may have been obvious to begin with and others perhaps not but highly likely to turn up later.

Half of us may recognize some serenic effect but perhaps no more than half of those will find it suits us. Some might have a wonderful response but this also could be a problem. Many may get antsy, restless, nervous, agitated, in which case this drug is not for us.  A bad effect is not going to turn into a good effect later.

This slow approach is not risky. Very few treatments need to be started in a full dose immediately and stuck with.

After this experiment, you will come closer to having the capacity, perhaps even then not full capacity, to decide if this is a good treatment option for you. Only you can know if the potentially good thing this drug offers you is worth the trade off in terms of hazards.  Think nicotine which also benefits many nervous states.  Only you can tell if you are in fact getting a benefit that warrants risking its hazards.  SSRI hazards are as bad as nicotine so you should be certain you are getting a benefit.

Dancing Capacity

Patient autonomy or (benign) medical paternalism are two sides of the same coin – highly individual ways of viewing things.  Both are inherently unscientific. Science is consensual – it’s a group activity.

Your doctor is not being scientific if s/he doesn’t listen to you on points like a drug’s effects on you.  You are opting not to get scientific treatment if you opt to stick with a doctor like this and get pushed into something you are not entirely happy about.

Your doctor will never alone have the capacity to work out what is right for you.  At best they can be a Dance Partner, a Guide through the Underworld – like Virgil with Dante.  But unlike Virgil, they are increasingly likely to desert us when we get near Hell rather than help us grapple with what happens there.  They desert us partly because neither you nor s/he established s/he had the capacity to deal with problems like the one you now need help with.

There is another set of capacities that need to develop. To dance, s/he and you need to know s/he can pick up the things you say or perhaps might not be saying, things in your body language, or that are just different from the last time you took to the floor.  Can you ‘dance’ together?  Have we established we are a good ‘fit’. If we’re not a good fit, best to change partners.

Most doctors look at me blankly when I mention SSRI problems – they say with conviction they have never seen these.  Ever. They’ve pushed Fluoxetine up to 80mg or more and seen no problems.

Peter Kramer had a post Listening to Prozac book called Ordinarily Well – See Storm in a D Cup – in which he claims to be clinically observing his patients very closely and can see none of the problems that get talked about.

Doctors are the consumers of prescription drugs and their consumption of Probity Blockers is transforming medicine into a trans medicine.

Legal

Informed consent has become like motherhood and apple pie – an in one ear, out the other phrase. Transferring the dynamics to criminal defense cases involving prescription drugs may restore a cutting edge to things – may sharpen the blade.

In criminal defense cases, when something has gone badly wrong, we have to plead guilty or not guilty. Like medical systems, the legal system is often loaded.

We will get told, the earlier we plead guilty, the more likely the court will be lenient on us as we have saved the system the expense of a trial, and eased the burden as early as possible on another person or people or their families, and this timely plea supposedly demonstrates remorse.  The courts might decide to take a few weeks off our sentence.

We have a bird incarcerated in the hand versus two free birds in the bush judgement call to make. Lawyers protest that they will abide by our decision even if they think it is wrong – although they will say off the record that in the case of clients who have a track record of being unwise they have a duty to intervene and recommend a guilty plea.

In practice, this turns out to be almost everyone. People who have no track record of being unwise are also close to pushed into pleading guilty.

What is rarely if ever mentioned are the things many ruefully later say they wish they had known about when asked to Freely Choose a plea.

We are not told we have just made ourselves a Felon.  Not just for a shorter period in jail, which might still be ten years, but for the rest of our life.  Our freedom to move around and go places will be drastically changed.  We will lose a lot of close friends permanently.

We are not told we have just made ourselves a lunatic. In order to scrape a few more months of mitigation our lawyers will hint at a mental disorder we likely never had and this taint will stay with us forever.

Finally we are likely, through the lips of our lawyers, to end up being viewed as liars.

Our lawyers will not have told us that one of the reasons for a guilty plea is they don’t know how to fight a drug induced case but they rationalize their decision to press ahead by saying no-one knows how to do this.

Just as when we see a doctor in a clinic, there is lip-service to the idea we are being informed, that our autonomy is being respected and that what we ultimately choose will be an exercise of our Free Will and not semi-coerced.

What’s to be gained by going against medical/legal advice? Maintaining our innocence, a conviction that what happened was not intended and would not have happened but for a drug, is a way of retaining a sense of self, a perspective that is critical to being able to continue functioning and might lead ultimately to a very different kind of validation than just being let out of jail.

A professional, whether a doctor or laywer, almost by definition used to be someone who was independent of Church or State, religion or politics, whose advice was born from their lived experience. They had to read books to qualify and maybe even guidelines, but in practice the good ones learnt from us and learnt to learn from our lived experience how to help us live the lives we wanted to live.

At their best they were like a sensitive book editor who with some edits can almost by magic make the book we were trying to write emerge out of the mess of stuff we handed to them or like a good dance partner able to give us the feeling we can do this.

Incapacitated

With all prescription medicines, we commonly do not really consent to starting treatment, and are not given a chance to develop the capacity to consent, and can end up with debilitating side effects we weren’t told about and ridiculed for thinking we have them.

But weirdly and above all ongoing treatment can remove both our our doctor’s capacity to dance. To learn to ski, dance or play the piano, we have to make mistakes. We learn by sensing the mistakes – this is where capacity comes from.  The risk of not being able to learn is particularly acute with SSRIs which mute sensing.

But this problem is true of many drugs for other reasons. The statins cause serious muscle and joint pains which are linked to fatigue and brain fog, but you often don’t link this to the treatment – until you stop it and realise you are feeling better and you’ve been putting up with a very abnormal state.  Why?  What’s getting in the way of learning.

Your doctor insists it’s misinformation to think your problems are linked to your statin.  The fraudulent medical literature pumped into healthcare systems is too simple an explanation for this Venomagnosia.  See also Johanna Ryan’s  Come Back when you have a Medical Degree to put this cartoon in context.

A fascinating 1982 paper by the Jachuks – his wife likely had the idea –  may be the most important medical article you’ve never heard of – see Jachuk and Jachuk.

The medics gave antihypertensives (likely clonidine) to 75 people. In all cases the doctors were pleased with the outcome – almost certainly because the mercury in the blood pressure apparatus was down to where they were told it should be.

Most of the patients figured they were improved. It’s difficult to know why they thought this as all had problems.  Probably because their doctor looked smugly happy with the mercury level.

In contrast, 74 of the 75 (other) dance partners of these patients, a husband or wife rated the outcome as much worse. Their dance partners who were fine up to then began having moderate or severe problems.  Some stemmed from the diagnosis – you have hypertension.  Diagnoses can incapacitate. But most stemmed from the clonidine.

When dancing the Clinic Jive, it looks like both we and our doctors are increasingly losing the capacity to judge whether our dance is helping us live the lives we want to live.  The people who live with us are better placed to spot what’s going on but rather than realise what a precious resource they may be the system pushes them to one side.

The side effects and neuroses our doctor can give us are still at Purgatorial levels of the Underworld. For Hell – See Entranced, Spellbound, Mesmerized.

Connect to Waggle

Communication by dancing has primal roots.  Ants, cockroaches, flies and bees who Waggle, communicated by dancing long before we did.  Most important conversations happen at lower levels than the verbal.

Everything about The Waggle Dance is here. The Waggle is just one example of some very sophisticated and mysterious processes – See Making Decisions, Ask an Ant.

It turns out some cockroaches and other insects are extraverts, risk takers (ADHD) and others are introverts, risk managers (ASD). Getting the right answers to decisions on where to locate food etc involve teamwork with the guys in the middle combining inputs from teammates to settle on the best option.

While many countries are sinking benearch a burden of disability benefits, this is almost the least of our problems. Countries are failing to function because we are increasingly unable to use the differences between us as a source of team strength – See ADHD, ASD Collide with Disability Benefits.

The doctor patient non-dance offers a microcosm of what is going wrong.  Some doctors were more risk takers, some risk managers.  It was the same with us.  With time and continuity of partners we often worked things out.

But now the differences between doctors get squashed. Companies encourage risk taking doctors to go on risk taking and risk managing doctors are forced by guidelines (Pathways) to give us the latest drug and push the doses up regardless of what’s happening. Continuity of partner once critical is gone – the system figures the Pathway has marked out the right steps regardless of partners. We might as well be trying to dance with a robot.

It used to be said a nuclear war would wipe out everything except cockroaches.  What will survive AI?