I have spoken a little about my day job as a psychiatrist, but I tend to avoid blogging about work here. Partly it is because I want to switch off when I am at home and forget the mound of paperwork growing on my desk, but partly I do not think my job is something others will find interesting (of course if you would like to know more about my life as a psychiatrist, then let me know in the comments).
Today however, I thought it would be interesting to speak a little about the work which is consuming me at the moment, as I find myself at an interesting intersection between psychiatry, the law, and fundamentally what makes a person an individual with all the rights and responsibilities that entails. Technically, I am completing a Section 49 requested capacity assessment, for now it is enough to know I have been asked by a court to decide if a patient is able to make decisions for themselves. We will explore in a little more detail later how the law (in England and Wales at least) marries with clinical reality.
What I want to think about first in a little more detail is what capacity actually is, who has it, who does not, and how you can tell the difference. While capacity might seem like a dull, abstract concept now, hopefully I can persuade you it is of fundamental importance to who we are and how we make decisions.
Let us begin by assuming you have capacity (as you will see later, assuming capacity is something which is at the heart of capacity law, so it is a good place to begin). If you go to a doctor or dentist or any other health professional, it is likely at some point they will do something to you. At the most basic, this might be a talk about whatever ails you, but it could include more personal and invasive actions such as examinations, blood tests, injections and even surgery.
Whenever a professional (or anyone else for that matter) does something invasive to another person, they need permission to do this. If I wanted to cut your hair, give you a tattoo, or indeed remove your appendix, I need to know that you consent to whichever procedure we have planned. This is a fundamental tenant of modern medicine, although of course it has not always been as clear cut. This idea might seem an obvious one, but it can be quite easy to take the need for consent for granted.
To be clear, to consent to something, you do not need to specifically say so every time, or even sign a consent form; given every procedure carried out in hospitals around the country everyday, it would simply be impractical. At times implied consent, rolling up your sleeve to have your blood pressure taken for example, can be enough, but the more serious the intervention, the more detailed and explicit the consent needs to be.
For those of you reading this post, this is likely to have been the state of affairs whenever you have gone to the doctor, at least since you became an adult. You will attend with a problem, the doctor will assume you have capacity to understand the decision you need to make (have your appendix out for example) and then they will take your consent in a manner appropriate to the severity of the intervention.
We will come later on to what it means to be able to give informed consent, and what you need to be able to demonstrate you can do for consent to be valid, but first we need to think about how and why you might lose capacity. After all, if we assume everyone has capacity, then why do we need to think about assessing it at all?
Imagine you are at the pub with friends and are in the process of consuming one or two alcoholic beverages. I know, it’s a difficult idea to comprehend, but work with me. As you drink more and more through the course of your evening, you will find yourself becoming more and more under the effects of alcohol. At some point in the evening, you will find your decision making changes. Suddenly despite being a vegetarian you find a doner kebab extremely tempting, or you think it is a good idea to go dancing into the small hours even though you have work the following day. You will almost certainly think nothing of drinking more, and at some point you might even black out entirely.
I am not going to ask for a show of hands who has found themselves in this situation, but I am sure if you have not, you can at least imagine what might be happening to your thought processes. At the start of the night, you are a capacitous adult, making the informed decision to have a drink with friends. After one drink, you are likely to still have capacity, but as you drink more, this is likely to be less and less the case.
Crucially though, losing capacity is not an all or nothing process. After five pints you might not be in any position to make big decisions about financial affairs or to get married, for example, but you might still be able to decide whether you want a kebab or a pizza. Capacity is a graded thing; someone can be capacitous to make one decision while at the same time lacking capacity to make another, and our alcohol example nicely demonstrates this. Eventually, if you drink enough alcohol you will likely pass out, and at this point you lack capacity entirely, and it is up to friends, or heaven forbid the emergency services, to now make decisions on your behalf to get you home safely (while it might not seem important now, making decisions for a person lacking capacity will become more important later).
Clearly, alcohol can impact on your capacity to make decisions, but what else could lead people to think you might lack capacity?
In short, it is anything which effects the way your brain works (we shall see later the law says anything impacting on mind or brain, but as I see the mind as just one function of the brain, for me saying brain is good enough. And for those interested I might do another post later on my views of the mind/brain/body problem). There is little argument the brain is the decision making organ in our body, so anything which effects, however small, the way our brain works can potentially impact our ability to make decisions.
Broadly, these problems can be divided into two categories, permanent problems with the brain and potentially treatable problems. You will probably be able to name a few conditions yourself. Permanent conditions might be something like dementia or a stroke, where the brain’s functioning is unlikely to improve. Potentially treatable conditions would include things like infections and sepsis which can cause delirium, a temporary dysfunction of the brain which is a sign someone is very unwell.
Dividing problems into these categories is useful later on when we consider when and where a decision is to be made, but I do not want to give you the idea that people with permanent problems never have capacity while those with treatable problems will always regain capacity again. Nothing could be further from the truth. There are people with dementia or who have had a stroke who are more than capable of making important decisions. Conversely, there are people for example who have meningitis, a treatable condition, who could be left with permanent brain damage meaning they never regain capacity.
I work with people with Learning Disabilities. Most, but not all, of my patients lack capacity in at least one important area of their lives, and as a Learning Disability is not something we can treat, it is unlikely their capacity will change significantly, at least not without a considerable amount of work and effort.
While we are assumed to have capacity, any one of us could lose capacity at any moment, and there are a myriad of causes, from the benign to truly serious, which could be to blame. A health professional must assume you have capacity, unless they have reason to doubt it. At this point, they then have to go about assessing whether in fact you do or do not have capacity, and it is this we shall look at in the next section.
Weighed in the balance
I have spoken about capacity as if it is a concept everyone will immediately understand, but I realise it is a nebulous idea which even I find difficult to define succinctly. This is a problem, because I am assessing capacity every working day, so I need to know what it is I am judging a person’s abilities against. Helpfully, the law comes in useful at this point. We will talk a little more about the law in England and Wales (the area I work) later, for now we will take the ideas as given as they are a usual tool to aid our discussion.
Fundamentally, the ability to make decisions can be broken down into four components; understanding, retaining, weighing and communicating. I will take a little time here to consider each idea in turn.
When making a decision, it is important to understand the information being presented in order to make an informed choice. If you asked me to make a decision which involved the use of particle physics, I would struggle to understand the information being presented to me, and so you could argue I lack capacity to make a decision. Ask me to make a decision involving a medical procedure, and I am likely to be on a better footing.
However, clearly most people do not have a medical degree, so you might ask how could anyone who is not a doctor ever have capacity to make medical decisions as they are unlikely to fully understand the decision to be made.
Firstly, someone only needs to be able to understand the information they need to know to make a decision. They do not need to understand in detail who the human eye works to consent to cataract surgery, rather they need to understand the reasons to do the operation (better vision) and the risks involved (infections etc). How much depth and detail one goes into will differ person to person. I would want the procedure explained in minute detail, someone else might be happy with the broad picture.
Secondly, there is an onus on the person proposing a treatment (i.e. the doctor) to explain the information in a way the patient can understand. If Brian Cox was to sit me down and explain what I needed to know about particle physics, I might just be able to make a decision in the end. The same is true of a medical procedure. The doctor might not explain the inner workings of the eye, but it is a good idea to know what the lens is and why it needs replacing.
It is no good understanding the information to make a decision, if you cannot remember it long enough to actual reach a conclusion. This can be especially a problem for people with dementia, where loss of memory is a core component. To retain information is a complex process, and will vary a little depending on the length of time you want to store something. Broadly, we have short and long term memory. If I was to tell you a phone number, you might be able to recall it in the few seconds it takes to dial the number (short term memory) but without repetition it is unlikely you will be able to remember the number the next day. To do this the information needs to be encoded in the long term memory.
How this happens is not important here (and certainly not fully understood). What is important is thinking about how long information is needed to make a decision. If I asked you to choose an ice cream flavour from a selection, you only need to recall the selection for a few seconds to make the decision. If I asked you to buy a house, you would need to recall information about the location and layout and decor of potentially a half dozen or more houses in order to choose which you want to buy, and you will almost certainly need to recall this for longer than a few seconds.
Retention of information to make a decision needs to be for as long as it takes to make the decision. It does not matter if a week later you have forgotten everything you were told, providing you could recall it at the point the decision was made.
When you think about making decisions, weighing the decision is probably the easiest concept to grasp. The idea of putting the benefits and risks of a particular intervention side by side and then deciding which is the best side to choose seems fairly intuitive. Effectively this is what is being done when someone weighs a decision, but there are a few subtleties to consider as well.
Firstly, a person needs to be able to accurately quantify what a particular risk or benefit is. If I was to tell you an operation has an 80% chance of improving your functioning, but there is a 55% chance of non-life threatening complications, is this an operation you would choose to have? It has a reasonable chance of success, but more than one in two people will be left with complications. Personally I would have to think long and hard about whether to proceed, you might find it easier to make a decision either way. And therein lies some of the subtlety. When we weigh information, we are not simply comparing numbers and percentages, we are applying our own values and experiences as well. To weigh the risks and benefits it is not necessarily good enough to know that for example complication A outweighs complication B, you need to also know what that means to you, and that can be a lot harder to assess.
There is a final part to a capacitous decision, and that is communicating whatever decision has been arrived at. There is no use the brain having successfully understood, retained and weighed information if this choice cannot then be communicated with others. After all, we are making decisions about actions other people will be taking, your surgeon for example, so they need to know what choice you have been made.
For most people, speech will be the most common way of communicating a decision, but there is absolutely no reason it has to be said aloud. For some decisions, consent may be best written down on a consent form, and for people who cannot or struggle with speech, then it might be signing or gesturing which is the communication modality of choice.
As the medical professional, it is the doctor’s role to support the patient with whatever communication method best suits them. They might need to provide pen and paper, or a sign language interpreter. They might need to give the patient more time, especially if it takes them a while to find their words. It is not good enough to say someone lacks capacity simply because they did not say yes or no straight away, they must be helped as much as possible to communicate their choice.
If someone is deemed to be able to do each of those four tasks, understand, retain, weigh and communicate, then regardless of the problem they have with their brain, they are deemed to have capacity (with a caveat which shall be explored in the next section). It is this ability, to make and communicate decisions, which I have been reflecting on as a possible component of what makes us human.
There is no doubt other animals make decisions. A lion chasing a herd of antelope on the African plains will choose which animal to target for a kill. This decision will rely on factors such as the health and age of the antelope, as well as its proximity to the lion. This is a decision being made by the lion, and will result in the lion targeting the easiest kill. What this method would not do is result in the lion making a choice which is might be more difficult in the short term, but could have more positive consequences in the longer term. A lion is unlikely to target a more powerful antelope simple because there will be more meat leading to more strength to hunt again.
Yet humans can do this. We can make decisions which are not to our immediate benefit, or which might not be to our benefit at all. Could this be a trait which separates us from (most) other animals?
And if it is a fundamental human trait, what does this mean to those who lack the ability to make decisions, does this make them less than human?
Of course not, that would be a ridiculous idea. Even if decision making is a fundamental part of a human, missing this, temporarily or otherwise, would not change our status as a human being. Most humans have two legs, missing a leg does not stop someone being human.
What it would mean, as with anyone with an impairment or disability, is they rely a little more on other people than the majority of people do. By lacking capacity, a person becomes dependent at least in part on others. There is no doubt they are more vulnerable, and in the second last section we will consider what this means for the person and the people caring for them. First, as promised, I want to touch on a couple of caveats to decision making.
The time, place and the daft decision
When we spoke earlier about alcohol and it’s effect on capacity, it was hopefully clear that capacity varies with time. As you become intoxicated, capacity is impaired. As you sober up, it is likely to improve. While alcohol will follow a fairly predictable course, other impairments of the brain can be more variable and unpredictable, so it is important to remember that capacity is time specific. For example, some people with dementia can be more lucid on a morning, less so at night. While they may lack capacity at midnight, they may well regain it again the next morning.
Coupled with time specific, capacity is decision specific as well. Deciding what you want for breakfast is a fairly insignificant decision, deciding whether to have an operation or not is much more consequential. It is not enough to say someone lacks capacity, you must clarify for what decision. Yes someone might not be able to consent to an operation, but that does not mean we have to choose their breakfast cereal for them as well.
Finally, it is important to consider that someone making a choice which is dangerous or reckless does not mean they lack capacity. I went skydiving when I was travelling in New Zealand, and many people would see this as a reckless decision, but no one, I hope, would say I did not have capacity to choose to jump out of a plane with nothing but canvas to break my fall. Someone might make a daft decision, but that does not mean it is not a capacitous choice.
What’s in your interest?
I have often said that if I am in a situation when I am seriously unwell and unlikely to survive, I do not want excessive, invasive treatments which will probably fail, rather I wish to be made as comfortable as possible and allow nature to take its course. I know the outcome this will have, and I am still happy with my choice.
Some of your reading this will be horrified. You will want any and all treatments possible to try and prolong your life, and anyone suggesting calling it a day is likely to be met with a stern rebuke.
Assuming both of us are capacitous, how can we have reached entirely different solutions to the same dilemma?
The answer to this is what is technically termed Best Interest. What is in my best interest might differ from yours, as what is important to me is different to you. And when someone loses capacity to consent to their care, it is up to the care givers to try and determine what is in someone’s best interest. This will of course take into account past wishes, what have they told people they want to happen at a time when they had capacity, as well as an evaluation of the situation before them and the likelihood of the success or otherwise of treatment. Arriving at a decision in someone’s best interest is arguably one of the most difficult parts of my job.
This is complicated as someone, say a relative or friend, cannot consent for another human being (above 18 years at least). There is a common misconception that a parent or spouse or child can consent for a relative who lacks capacity. Some people assume if they say Aunt Ethel should have the hip replacement, then that is enough.
This is not the case. No one can consent for someone else, so when capacity is lacking, it is the person proposing treatment, the doctor or surgeon etc, who has to make the decision on behalf of the patient. Yes they will listen to relatives where possible, but they might not necessarily follow their views, and this can be one of the most difficult discussions to have.
Here come the lawyers
In England and Wales, the jurisdiction I live and practice within, what capacity is and how to determine it was finally codified in 2005 with the Mental Capacity Act. This act governs everyone who is proposing or giving care, and sets out how to assess capacity, and what to do if capacity is lacking. Like any law, it has flaws, some of which are due to be addressed with amendments later this year, but on the whole I feel this is a fairly well written piece of legislation. It sets out the rules for determine capacity in a way which is easy to follow, although of course there is always room for interpretation and a good argument.
And this brings me nicely to the report I have been writing this week. One part of the capacity act is how we legally keep someone in a hospital or care home when they cannot consent to stay there. In the bad old days, people would simply be prevented from leaving. But anyone with a basic understanding of human rights law will know that this is depriving someone of their liberty, a fundamental human right.
If you deprive someone of liberty, there needs to be a legal framework around them to protect their rights and give them the chance to appeal the decision. Currently, this is called the Deprivation of Liberty Safeguards (DoLS), and any appeal of DoLS is heard in the Court of Protection (CoP). I am not going to go into the technical details of how an appeal of a DoLS is made, it is enough to know that the patient I am assessing has a case before the Court, and the judge in the case has asked me to assess the patient’s capacity for a variety of decisions.
Why me you might be asking, well the patient has a variety of conditions which come under my area of experience, and although I would never call myself an expert I certainly find myself using the details of the Mental Capacity Act more than many of my medical colleagues.
I am trying to decide whether there is a conclusion to this post. My aim was to highlight an area of medical practice and law which a lot of people will know little about, and I hope I have done that here. I should also hope that in the future, should you or someone you know find themselves at the business end of a capacity assessment, you might at least begin to understand the process which is being taken to reach what could be a difficult decision, and surely that is a good thing.