Whose Decision Is It Anyway?

Capacity, autonomy and why the law must enter the world of those who struggle: not the other way around.

Introduction

Imagine this.

You’ve been given a handsome bonus from work. You decide that you want to open a stocks and shares ISA with the money. You go along to your bank - your bank where you’ve had an account for over 10 years - and explain to the bank clerk (let’s call him Clark) what you want to do.

You’ve done your research and you know exactly which ISA product you want to invest in. Clark looks at you gravely, purses his lips and audibly draws in breath while gently shaking his head.

“Risky,” says Clark.

“Risky?” you say.

Clark nods - slowly, very slowly. “How about a cash ISA,” he says.

“I don’t want a cash ISA.”

“Minimal risk,” Clark says. “In fact, if risk is a wet day, cash ISAs are a sunny afternoon. If you see what I mean.”

“I’m not sure that I do.”

“Do what?”

“Follow what you mean. But please don’t trouble yourself with an explanation. I don’t want a cash ISA. I want to open a stocks and shares ISA. This stocks and shares ISA,” you say pointing to bank leaflet advertising a stocks and shares ISA.

“Are you sure?” Clark asks.

“Yes.”

“Very sure?”

“YES.”

“You insist on a stocks and shares ISA?”

“YES”

“Okay, okay, if you really insist.”

“I do.”

“Do what?”

“Insist.”

“Oh, I see. Well, have it your way. Now, as I said, stocks and shares ISAs are risky. Because of the risk, associated with risky stocks and shares ISAs I need to be sure that you are able to make the decision freely and voluntarily to take out a risky stocks and shares ISA . To put it simply, in a nut shell, without any bells and whistles, to give you just the turkey without the trimmings…

“Forgive me for interrupting, could you get to the point before you reach retirement age?”

“Which point?”

“The point you’d like to make simply, in a nut shell, without any bells and whistles, giving me just the turkey without the trimmings… .”

“Oh that point. Well, the point is, I have to be sure that you understand the risk associated with risky - very risky - stocks and shares ISAs.”

“And how do you propose to do that?”

“As I was going to say, the way I’ll do this with what we call a test of capacity.”

“A test of capacity? What the fu… . Please tell me what on earth is that?”

“Well in laymen’s terms - we don’t want to get too bogged down with philosophical niceties do we - it means I need to test your ability to make a decision about entering into this particular transaction. To put if simply, in a nut shell… Wait, where are you going. What about the test? Can you come back tomorrow? Or we could do it online.

What Is Capacity?

I hope, at the very least, should this happen to you, you’d be incandescent with rage. However, we’ll say no more about that. The story, though, raises the question of what do we mean by that word capacity?

Clark’s explanation is not a bad one. Capacity, in this context, is referring to your ability to make a decision. Questions about our capacity for decision-making find their sharpest expression in the context of health care. But questions of our capacity - or incapacity - may also be found in such areas as contracting, making wills, entering into financial arrangements and many others.

The thing is that for most of us most of the time questions about our capacity to make decisions don’t arise. But they can. Let me give you a couple of examples. Following the usual convention, the person whose capacity is in question is referred to as P.

1. P is riding her motorbike to work. She has a serious accident and is rendered unconscious. She needs emergency surgery. She is unable to consent. No relatives can be contacted. Time is now of the essence. What do the surgical team do?

2. P is in his early 60s. He has been prescribed medication by his doctor that has caused an adverse reaction. He has become confused and his memory, alertness and ability to reason have been affected. P’s doctor stops the medication and wants to take a blood sample. P, however, is unable to consent to the blood being taken. How does the doctor proceed?

3. P is in her late 60s. She recently suffered a stroke. She wants to sign an investment contract for a large portion of her savings. During the meeting, she struggles to understand the risks and repeatedly asks the same questions. She is unable to weigh the consequences. How should the adviser proceed?

4. P joins a clandestine religious sisterhood. Over a period of years she donates significant amounts of money to the sisterhood. After 10 years she leaves the sect and claims back the money arguing that she did not freely consent to the donations.

So, quite simply, any of us, at some point in our lives, may find ourselves in a position where our ability to make a decision is compromised. Let’s look in a little detail at the concept of capacity. The starting point for this is the Mental Capacity Act 2005.

The Mental Capacity Act 2005

Let’s just go back to your attempt to open a stocks and shares ISA. We could be charitable and say that Clark had you best interest at heart. However, in doing so he was ignoring the fundamental principle of English law. The Mental Capacity Act 2005 (The Act) says that:

A person must be assumed to have capacity unless it is established that he lacks capacity. (We’ll refer to this as the presumption of capacity, or simply the presumption.)

Questions of capacity lie at the interface of two opposed principles: autonomy and paternalism. On the one hand, we want to be able to live our lives by our own lights. Human beings are autonomous creatures. On the other hand, there are occasions when our ability to make decision is compromised and it seems that there is some kind of state mechanism that can step in and paternalistically look after us.

In example 1, above, there are few people who would blame the surgical team for doing all it can to save P’s life. There is manifest evidence that P lacks capacity.

In example 2, P’s state of confusion appears to be temporary. Perhaps there will be a time very shortly when P is more lucid and can consent to having blood taken. As you will see below, P must have capacity at the material time that the decision has to be made. Capacity fluctuates, so P may not be able to decide now but will be able to do so tomorrow. That may be inconvenient for the person wishing to take the blood. And there are undoubtedly people who would argue that the blood should be taken anyway.

Example 3 seems a tad more complicated. For the purposes of this article, We do not go into issues of powers of attorney. The point of example 3 is that just because P’s cognitive ability is compromised it does not mean that she cannot make financial decisions. She may need more time and need information presented to her in a way that she finds easier to follow. The Mental Capacity Act recognises that different people will require different levels of support to make decisions.

Example 4 is a little different. There are probably many instances where people have entered into similar arrangements because of powerful influences. While P might now regret her decision and feel she was manipulated, this does not automatically mean she lacked the mental capacity to make those donations at the time. Her case instead falls under a different, though related, area of law known as undue influence. For several decades now, there has been a developing body of English law on undue influence. In particular, this law shows the steps that the beneficiary of P’s action needs to take just in case P has a change of mind.

Let’s go back to Clark. He was doing the exact opposite of the Act’s presumption: A person must be assumed to have capacity unless it is established that he lacks capacity. Clark was presuming incapacity and asking you to prove to him that you had the ability to decide. Being less charitable - which in this situation appeals to me - Clark was demonstrating why the presumption exists. His approach was paternalistic, patronising, condescending, overbearing, infantilising, an affront to your human dignity and a violation your autonomy.

So, we’ve looked at the presumption. The question now is what will constitute sufficient evidence to rebut the presumption. The Act says:

For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.

This is referred to as the diagnostic test. What I’m going to say now is an incredibly important point. Just because you have an impairment of, or a disturbance in the functioning of, the mind or brain it does not follow that you are unable to make decisions.

To repeat the point: it is important.

Note that the test says: you lack capacity to make a decision because you have an impairment of, or a disturbance in the functioning of, the mind or brain.

It clearly DOES NOT say that because you have an impairment of, or a disturbance in the functioning of, the mind or brain you therefore lack the capacity to make a decision.

Let me repeat: that distinction is of the first importance.

The question, then, is how do you determine whether you lack capacity because of an impairment of, or disturbance in, the functioning of, [your] mind or brain. The answer is that there is a second test in the Act. This test is known as the functional test.

The functional test states that:

[A] person is unable to make a decision for himself if he is unable

(a) to understand the information relevant to the decision,

(b) to retain that information,

(c) to use or weigh that information as part of the process of making the decision, or

(d) to communicate his decision (whether by talking, using sign language or any other means).

If you are unable to do anyone of those four things you will be assessed as lacking capacity to make a decision.

It’s called the functional test because it tests the functioning of decision-making, not the presence of a medical label. It assess capacity in relation to a specific decision for a specific task at a specific time.

I now want to look in more detail at the presumption and the diagnostic test.

The Presumption and Diagnostic Test

Let me tell you a story about my father. He died in 2020 a few weeks short of his 94th birthday.

In his later years, he was an extraordinarily difficult man. He moved from his home in the Midlands to live near me. This was around February 2019. He moved into a flat about 30 minutes from where I live. As an aside at this point, I like to think that notwithstanding his curmudgeonly nature, my dad would be as chuffed as a flamingo balancing on a surfboard if he knew how much he’s influenced my writing.

I promised him that I would look after him. I promised him that his decisions about his care would always be respected by me. And I promised him that I would ensure that others respected his decisions. Although my dad made it very challenging at times, I am very pleased that I kept my promises.

Those promises were important to me. I believe with a conviction that makes faith look like doubt that human autonomy is next door to inviolable. So, consequently, my dad’s choices (whatever I may have thought of them) were as important to me as they were to him.

I found my dad a flat in a large block that was staffed by a manager during the day. When we first arrived at the building to get my dad settled, we were met by the manager who asked my dad if he’d mind if he (the manager) asked him a few questions.

My dad completely ignored him and continued walking unsteadily with his Zimmer frame. This was not an act of rudeness from my dad just a demonstration of his significant hearing impairment. However, his reply of “Would I buggery” to my asking him if he’d like to answer a few questions for the manager was a hallmark example of his seriously clogged up moral filters.

Anyway, we agreed that once we’d got him into his apartment, I’d come back down and deal with the manager’s questions. And that is how, 30 minutes later, I found myself in the manager’s office, not for the last time in the next 20 months or so, apologising unreservedly for my dad.

The manager asked me a few things like who was my dad’s doctor, emergency contact numbers and the like. Then he asked “Does your dad have capacity?”

I have to offer an explanation at this point in case you notice my writing becoming increasingly like the ravings of a mad man. We are at the point in the article where we have reached the crux, and it is a crux that involves my bête noir, the thing that exasperates me beyond exasperation. And that thing is…

… the question does he have capacity?

Okay, it’s not the question itself. It’s the situation in which the question is asked. I’ll try and be polite. It is utter nonsense to ask if P has capacity when you are not in the presence of P. Also, capacity is not assessed in a vacuum. It is an assessment of the capacity to make a decision about something.

The presumption and diagnostic test are quite clear. You must assume P has capacity unless at the material time P is unable to make a decision in relation to a matter.

The matter can be anything that needs to be decided. For example, you and your elderly mother might be talking about her going into a care home. That is a matter that she needs to make a decision about at the material time. If she decided 5 years ago that she wanted to move into a care home at some point in the future, that is probably not the material time.

One of the most important things to grasp about capacity is that it can fluctuate. Let’s look in a little more detail at the nature of fluctuating capacity.

Fluctuating Capacity

First of all, capacity is not an all or nothing concept. It is a total nonsense to say that P lacks capacity tout court. As I said above, P, if he lacks capacity, lacks capacity to make a decision about a particular matter.

A word about example 1, above. P is unconscious. The surgical team acts. Few would quarrel with that. But it would be a mistake to conclude that P lacks capacity full stop. Even here, the principle holds: P lacks capacity to make a decision about emergency surgery at that moment. She does not lack capacity for everything, for always. Adrian Owen's research (see below) suggests that even in states of profound unresponsiveness, awareness and preference may persist. And the presumption does not evaporate the moment someone loses consciousness it waits. When P recovers, the presumption revives. There is, in truth, no once and for all capacity assessment. Every decision, at every material time, requires the question to be asked afresh. The courts have sometimes suggested otherwise. I respectfully disagree. That, however, is a argument for another day.

There is, also, a developing and contested line of judicial authority that attempts to address fluctuating capacity through what the courts have called macro-decisions and longitudinal assessments. Without going into detail, these approaches carry significant risks not least that they can operate to extinguish the legal weight of genuine capacitous moments in the name of administrative convenience. This is, I would argue, a dangerous direction of travel. It is also a rich topic for another article. For those who want to explore it further, Alex Ruck Keene's website is a first class starting point.

I guess it is equally nonsensical to say that P has capacity. Just as P must lack capacity to make a decision about something, it must be the case that he has capacity to make a decision about something. But, once more, this is the theme for another article at another time.

I always think it is best to view capacity as existing on a spectrum. At one extreme you have full capacity. At the other, extreme you have a complete lack of capacity. Incidentally, I acknowledge that there are people who disagree with my spectrum model.

In between the extremes, you have people whose capacity fluctuates. Capacity is sometimes said to be time specific, or task specific (I’d argue that often it is both of these). P can decide about somethings but not others. P can make decisions quite well this morning about certain things but not so well in the afternoon.

In a metaphysical sense, it is always the case that a P either has capacity or lacks capacity for a particular decision. Either the presumption applies or it is rebutted.

Let’s take a moment to look at my extremes. First of all, I struggle with the idea of full capacity. At best this is a legal fiction. Few if any of us have perfect decision-making capacity. And remember, the Act kicks in when you have P who has an impairment or disturbance of the mind or brain.

But, and I emphasise this point, struggling to make a decision about something is not a lack of capacity to make a decision about something.

Now to the other extreme. The point I am going to make will be a topic for another article. I argue that complete lack of capacity is rare. There is a growing body of opinion suggesting that even at this extreme, something recognisable as awareness, preference and will is almost always present.

Adrian Owen is a British neuroscientist and Canada Excellence Research Chair at Western University, whose pioneering use of brain imaging to detect consciousness in unresponsive patients transformed our understanding of disorders of consciousness. Owen uses the term the grey zone for the state between full consciousness and complete unawareness, a state where patients diagnosed as vegetative are, in reality, consciously present but unable to demonstrate it through behaviour or movement. He suggests that approximately one quarter of patients diagnosed as vegetative demonstrate covert awareness on neuroimaging.

Now that has monumental implications for the way we consider the capacity to make decisions. Whilst Owen's research concerns acquired brain injury, the implications extend more broadly to how we assess the presence of awareness and will in anyone who cannot demonstrate it through conventional means. If awareness and preference can be present in someone who appears entirely unresponsive, the bar for rebutting the presumption of capacity must be set very high, and the obligation to look harder before concluding absence of capacity becomes a moral imperative, not merely a procedural one.

I will end by saying this. I have always said that it is incumbent on society in general to enter into the world of those who struggle with decision making. It is not the responsibility of those who struggle to come into ours. The work of Adrian Owen and colleagues adds force to this argument. And this is fertile ground for further articles.

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