FREE CHAPTER from ‘A Practical Guide to the Law of Deprivation of Liberty’ by Ben Troke

CHAPTER ONE – GETTING THE MENTAL CAPACITY ACT RIGHT

Let’s start with this: the single most important thing about deprivation of liberty is getting the Mental Capacity Act (MCA) right[1].

In my experience, when an organisation gets into trouble over a deprivation of liberty issue it is rarely due to some nicety or nuance of the law on deprivation of liberty. Instead, almost always, there has been a fundamental misunderstanding or misapplication of the MCA, though deprivation of liberty may well be the issue that has brought the problem to light.

To be clear: in depriving someone of their liberty in the health and social care context (as opposed to, say, criminal justice or immigration), the basis for this is that they cannot make the relevant decision for themselves (they “lack capacity”) and that arrangements are made for their care or treatment in their best interests.

When those arrangements, even if the least restrictive to meet their best interests, may amount to a deprivation of liberty, there needs to be an extra layer of scrutiny and safeguards to protect the person’s rights.

But any review and authorisation of the deprivation of liberty – however important a safeguard – does not in itself authorise the care or treatment involved, which must always be justified by proper use of the MCA. A DoLS authorisation is not a substitute for using the MCA appropriately and asking the right questions:

  • What care or treatment is appropriate / available?
  • Can P make a decision for herself (with all reasonable help)?
  • If not, what is in their best interests (taking into account her own wishes and feelings, values and beliefs, and the views of those caring for them?
  • Is there is a less restrictive way to meet their best interests?

After that, if the care or treatment proposed may amount to a deprivation of liberty, then a further layer of scrutiny is needed as a check, given the gravity of the interference in someone’s life, NOT as a substitute for that MCA framework and thinking.

To labour the point: if the care or treatment is lawful for P[2] it is because the MCA is used appropriately to do something in someone’s best interests where they cannot make the relevant decisions for themselves. If it might amount to a deprivation of their liberty then this needs a Deprivation of Liberty Safeguards (DoLS) authorisation or a court order to make it a lawful deprivation of liberty, but the lawfulness of the underlying care or treatment depends on the MCA.

A DoLS authorisation is not in itself a green light, or a blank cheque, to do what you like for (or “to”) a patient, no matter how intrusive or coercive, without due regard to the MCA.

So, before I get to the issue of deprivation of liberty, I hope it will be useful to explain a few of things that most often go wrong with use of the MCA in this context[3]:

  1. Misunderstanding “capacity” – Failing to recognise the assumption of capacity, treating it as a generic issue, instead of a focus on the specific decision that has to be made, and failure to identify the actual available options;
  2. Over protectiveness: A natural concern to keep people safe leading to an inappropriately narrow view of best interests, unduly focussed on keeping people safe at all costs, or tempting us to find a lack of capacity too readily when a person is making a decision we feel is too risky; and
  3. Best interests decision-making process: How to give proper weight to P’s own views, and how to appropriately involve others such as their family.


Decisions, decisions

We cherish the idea of consent out of respect for the fundamental ethical principle of autonomy – i.e. that people’s own lives should be determined by their own decisions as much as possible.[4]

But autonomy is only one ethical principle. A competing principle is of beneficence: doing good. We will often want to intervene in someone else’s life and decisions because it will be better for them if we do (or so we think), and those driven towards the caring professions might well be at higher risk of finding it very difficult to let someone do something we think will harm them. When the post legislative scrutiny committee looked at the MCA, it was critical of the aims to empower the patient being frustrated too often by risk aversion in social care and paternalism in healthcare.

The tension between autonomy and beneficence is a common thread through many of our challenges in health and social care: treatment without consent where it’s what someone needs; or withholding something people want when we deem it bad for them.

At the core of the Mental Capacity Act 2005 (the MCA) are the questions of how we support people to make their own decisions where possible, how we make best interests decisions for people who cannot, and (crucially) how we tell the difference.

The MCA is a carefully crafted bit of work. There was a lot of thought and consultation, and a long period of implementation, and it is a great bit of law. It is well-written, coherent, and largely self-explanatory; we can readily see what it is trying to do, and how it goes about it; it has a clear code of practice[5], in plain English, with clear examples, albeit badly in need of updating[6].

The MCA provides a legal framework for making decisions about almost everything – from the vital, everyday trivia of what to wear, or eat, and management of our finances and property, through to some of the most important decisions of our life – where we live, who we have contact with, and whether or not we have risky medical treatment[7].

In fact, one thing that is entirely excluded from the MCA is the compulsory treatment of mental disorder without the patient’s consent[8], which is the province of the Mental Health Act 1983 (as amended)[9].

So the one thing I do not like about the MCA is the title. I would not have called it the Mental Capacity Act (it started life as the Mental Incapacity Bill, which I think would have been even worse!). I think the word “mental” here is unhelpful and adds nothing, and can be misleading.

I have known clinicians treating physical health conditions flatly refuse to engage with the MCA, saying it is a matter for a psychiatrist.

That is just plain wrong. If a clinician or carer cannot give a view on P’s capacity to make the decision about the treatment or care he proposes, then he cannot be confident that the patient has given valid consent. (I do appreciate that I will be jaundiced by disproportionate exposure to the clinicians who need support and advice about cases, either because they are less familiar with the legal framework, or because it is an especially sticky one. No one ever phones the lawyers to say everything’s grand. But I have sometimes found that clinicians have got a stronger sense of the need for consent than they have of the niceties of the MCA, despite the obvious point that without capacity to make the decision there can be no valid consent).

There may be a useful role for a psychiatrist to give a view on a patient’s mental condition, of course. But the treating clinician knows the information relevant to the treatment decision that needs to be made, has a responsibility to get consent, and (since there is no consent without capacity), cannot simply abdicate responsibility for assessing a patient’s capacity entirely.

So, I love the MCA but I would drop the word “mental” from the title.

And if it were up to me, I would also drop the word “capacity”! My suggestion would be to call it instead the “Making This Decision Act”, and I’ll explain why.

The MCA is not about making decisions in general, and I think that the use of a fairly abstract noun like “capacity” lures us towards saying something meaningless (and dangerous) like “Doris lacks capacity”.

“Capacity” in the MCA is defined as the ability to make the particular decision which needs to be made. So, to lack capacity for, say, a decision about where to live, or having an amputation, the person must be unable to make that decision. This is defined as being unable to understand, or retain, or weigh up and use the information relevant to that decision, or (and this is less common, given the scope of support that can be offered) unable to communicate a decision made. That’s called the “functional test”.

The inability to understand / retain / weigh up and use the information must be because of a (temporary or permanent) impairment or disturbance in the functioning of the mind or brain, sometimes called the “diagnostic test”. The input of a psychiatrist might be helpful here to consider if there is such a condition and its impact on decision-making. But clearly the psychiatrist does not know as well as a surgeon, for example, the information relevant to the decision about an amputation (the risks and benefits, the options, and the consequences of refusing the treatment altogether), or a social worker, perhaps, about a decision where to live and the kind of care package available.

And this is why, if someone asks for your view about “capacity”, you are best to reply “for what decision?”. And why it is meaningless to say that someone “lacks capacity” without reference to the decision in question. Unless or until the decision, and the actual available options, are identified, it cannot be possible to assess whether or not the patient can understand or retain or weigh the information relevant to the decision, because you cannot know what the information is!

We all get casual at times, but it helps to have an alarm bell whenever you see or hear the word “capacity” followed by a full stop. It means nothing unless we are clear that we are looking at the patient’s capacity to make a decision about this medication, or about that surgery, or about their admission to hospital or their residence on discharge. Each decision has different information which is relevant to it, and the fact that someone cannot make one decision does not mean that they cannot make any other. It is perfectly plausible that someone may lack the capacity to make a decision about complex chemotherapy options, for example, but be able to make a simpler decision about more straightforward issue, like who can be told about their treatment.

I think we do better to use the word “decision” much more often than the word “capacity”. For starters, this unavoidably starts us off in the right starting place: what is the decision that needs to be made, and what are the actual options available, to identify the relevant information to meaningfully assess capacity?

Using “decision” also helps to avoid another huge bear trap by making sure we focus on the actual available options, and what is actually P’s decision (as opposed to being the decision of the relevant public bodies, such as the NHS or the local authority, what options to offer). So, if Bob has a terrible disease and needs surgery, the surgeon may offer procedure A, or B. Each has risks and benefits, and Bob – if he has the capacity to make the decision for himself – can choose A, or B, or if he wishes can decline treatment altogether, for his own reasons, good, bad or indifferent.

Likewise, a local authority might offer to fund for Betty a certain domiciliary care package, or residential care in either the Oaks or the Willows, but not in the Firs (which is twice the cost).

Autonomy, and capacity, means choice among the options we actually have, not the power to command more than is possible.

But suppose Bob or Betty cannot make that decision for themself because his schizophrenia or her dementia means that they cannot understand or retain or weigh up the information relevant to the actual options (i.e. they each “lack capacity” for that decision). Then a “best interests decision” must be made.

But Bob’s and Betty’s options are the same regardless of their capacity.

It might be in Bob’s best interests to have operation A or operation B, or perhaps to have no treatment at all. But you can’t say (as a matter of best interests) that he should have operation C instead. The surgeon is not offering that to Bob, and the decision what treatment options to offer is the surgeon’s decision, not Bob’s. Bob can’t make the surgeon offer something he is unwilling to do, whether because it is not clinically indicated, or because it is not available as a matter of practicality or funding or whatever. Bob’s decision is to choose among the actual options made available to him by the clinician, and a best interests decision on his behalf is no different.

Likewise, the same goes for Betty’s choice of the domiciliary care or the Oaks or the Willows residential care home. She has no “best interests” basis to insist on being offered something else, as opposed to choosing among the options actually available.

This seems trite, but (along with the role of, ahem, “next of kin”, below) I cannot tell you how often this is the root of confusion and dispute.

“Best interests” does not trump resource allocation or professional decision-making about available options. It is not a queue jump card for stuff that would not have been available to the same person if he had capacity to make the treatment or care decision for himself[10]. Is it very important to make sure that someone does not get less because they lack capacity to make the relevant decision, but they cannot demand more.

Of course, there may be reasonable arguments about human rights on resource allocation, for example, which are beyond the scope of this book, and a judicial review can be brought to argue that other options ought to have been offered, but because what to offer is not the patient’s own decision, it cannot be a matter of best interests or up to the Court of Protection.

But time and again cases are unnecessarily difficult because they start in the wrong place, asking what’s in Bob’s or Betty’s best interests as if in the abstract, on a blank piece of paper or a blank cheque, without first properly identifying the decision or the available options.

Instead:

  • Start with Bob’s situation, and what does he need?
  • What is to be made available to him, whether limited (reasonably, or else you may be challenged in judicial review) by resource allocation, or professional judgement?
  • That identifies the options, and therefore the information relevant to the decision, and it is only at this stage that you can sensibly assess whether Bob or Betty has capacity to make this decision for themself, and if so to take their consent, if they give it.
  • If they cannot make that decision for themself, as they cannot understand / retain / weigh up the information relevant to the decision, then a best interests decision should be made for them, from among the same available options.

I strongly recommend using the word “decision” as much as possible, and am much more comfortable when I can see the word “decision” used in the paperwork far more frequently than the word “capacity”.


Best interests and the protection imperative

Bob’s best interests might well be to have the treatment that saves his life, or that gives him the best chance of the best medical outcome, but it is not as simple as that.

Equally, Betty may be safer in residential care than at home with a domiciliary care package, but that does not conclude the question of what is in her best interests. If best interests were simply whatever made someone “safer”, then the MCA would say so. It doesn’t. It says make the decision that is in their “best interests”, taking into account a range of factors.

As we will see, the preservation of life at all costs is not necessarily in a person’s best interests, as interpreted by the courts at least. And a view of best interests must be taken at a more holistic level:

“The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be”[11].

Those words are from the judgment of Lady Hale in Aintree University Hospitals NHS Foundation Trust v James, the first Supreme Court case to consider a medical treatment decision (withholding life-sustaining treatment) under the MCA.

In another context (a case under the inherent jurisdiction dealing with capacity for sexual relationships[12]) Munby J (later Lord Justice Munby) coined one of the most familiar phrases on this point, at the end of a passage I’ll set out in full:

“The fact is that all life involves risk, and the young, the elderly and the vulnerable, are exposed to additional risks and to risks they are less well equipped than others to cope with. But just as wise parents resist the temptation to keep their children metaphorically wrapped up in cotton wool, so too we must avoid the temptation always to put the physical health and safety of the elderly and the vulnerable before everything else. Often it will be appropriate to do so, but not always. Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare. The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness. What good is it making someone safer if it merely makes them miserable?[13]

A similar point has been made in judgments time and again. In a case about whether a 67 year-old lady must remain in residential care, or could return to her own home as she wished, Mr Justice Peter Jackson said:

“In the end, if M remains confined in a home she is entitled to ask “What for?” The only answer that could be provided at the moment is “To keep you alive as long as possible.” In my view that is not a sufficient answer. The right to life and the state’s obligation to protect it is not absolute and the court must surely have regard to the person’s own assessment of her quality of life. In M’s case there is little to be said for a solution that attempts, without any guarantee of success, to preserve for her a daily life without meaning or happiness and which she, with some justification, regards as insupportable”.[14]

It is easy to understand the anxiety in public bodies, and in the dedicated individual professionals working in health and social care, to keep people safe, and secure the best outcome for them within the scope of their expertise. At times this can incentivise a tendency to find a lack of capacity as a means to intervene and / or, having done so, to lean towards the best interests decision that tends towards the safest outcome. That needs to be treated with some care, and awareness of it is a good place to start.

Adapting a phrase previously used in the context of proceedings about the welfare of children, Mr Justice Baker called this the “protection imperative” to sum up this instinct in the case of CC v KK[15]. KK was an 82 year-old lady who had developed Parkinson’s Disease and vascular dementia, on top of a paralysis of one side she had suffered since childhood. She lived alone in a rented bungalow supported by a social care package, which included provision of a “lifeline” system to call for assistance, which she used no fewer that 1,097 times in a 6-month period, which I reckon to be about 6 times per day, on average.

She was placed, under a DoLS authorisation, into residential care with dehydration and a urinary tract infection. She challenged this, arguing that she was able to make her own decision to go back to her own home, which brought the case to court. I’ll come back to the case in more detail in Chapter 9, dealing with the information that a person ought to have for their capacity to make decisions to be fairly assessed, but for now it is useful to mark Baker J’s warning:

“…in cases of vulnerable adults, there is a risk that all professionals involved with treating and helping that person – including, of course, a judge in the Court of Protection – may feel drawn towards an outcome that is more protective of the adult and thus, in certain circumstances, fail to carry out an assessment of capacity that is detached and objective”. …

“… in evaluating capacity the court must recognise that different individuals may give different weight to different factors. There is, I perceive, a danger that professionals, including judges, may objectively conflate a capacity assessment with a best interests analysis and conclude that the person under review should attach greater weight to the physical security and comfort of a residential home and less importance to the emotional security and comfort that the person derives from being in their own home. … These considerations underpin the cardinal rule, enshrined in statute, that a person is not to be treated as unable to make a decision merely because she makes what is perceived as being an unwise one”….

“In this case, I perceive a real danger that in assessing KK’s capacity professionals and the court may consciously or subconsciously attach excessive weight to their own views of how her physical safety may be best protected and insufficient weight to her own views of how her emotional needs may best be met.

The judge also quoted from a speech given by Lord Justice Munby[16] in very similar terms to his judgment in MM quoted above, but which adds, significantly:

“… The State must be careful to ensure that in rescuing a vulnerable adult from one type of abuse it does not expose her to the risk of treatment at the hands of the State which, however well intentioned, can itself end up being abusive of her dignity, her happiness and indeed of her human rights. What good is it making someone safer if it merely makes them miserable? None at all! And if this is where safeguarding takes us, then is it not, in truth, another form of abuse – and, moreover, abuse at the hands of the State?”

In the case of Peggy Ross,[17] Cardiff City Council rushed off to court on a Friday seeking an order to prevent an 82 year-old lady who was resident in one of their care homes from going on a cruise holiday, which was due to depart the following Monday. She had been admitted to the care home due to her dementia around 3 months earlier. The local authority assessed Mrs Ross to lack capacity to make a decision about going on the cruise, as she “lacked insight [18]into her needs”, and were concerned that it would not be safe for her to do so, because she was prone to wandering and might fall overboard.

The judge was critical of the assessment of capacity, saying that it was a comparatively simple decision for her to make, especially as she had been regularly going on cruise holidays with the same gentleman for the last 20 years. But, without time to really get into the evidence on this, he concluded that it was in her best interests to go on the holiday in any event, even if she did lack the capacity to make the decision for herself.

With some sympathy for the concerns of the professionals involved, he said:

“My strong impression is that her social worker and the staff at the home want to do the right thing for her but are focussed on her safety and are acutely aware of things that might go wrong. Perhaps the prime example of this was the concern that Mrs Ross might ‘wander’ (as she undoubtedly has in the past when living alone) on the ship and go over the side. It was suggested, not without some force in my view, that this smacked of saying that her best interests were best served by taking every precaution to avoid any possible danger without carrying out the balancing exercise of considering the benefit to Mrs Ross of what, sadly, may be her last opportunity to enjoy such a holiday with Mr Davies. This led, in my view, to trying to find reasons why Mrs Ross should not go on this holiday rather than finding reasons why she should”.

What use is it making someone safer if it only makes them miserable, indeed.


Incapacitous autonomy

While lack of capacity for a particular decision may limit the exercise of your autonomy, it should not extinguish it.

In AB, Mrs Justice Lieven had agreed that the termination of pregnancy for a 24 year-old woman with a learning disability, against her wishes, was in her best interests, but the Court of Appeal reversed the decision; AB would go ahead to have the baby, even though it would be removed by the local authority. The Court of Appeal said that the decision had been rooted in the medical evidence, but that the failure to mention AB’s wishes was a significant omission.

“Part of the underlying ethos of the Mental Capacity Act 2005 is that those making decisions for people who may be lacking capacity must respect and maximise that person’s individuality and autonomy to the greatest possible extent. In order to achieve this aim, a person’s wishes and feelings not only require consideration, but can be determinative, even if they lack capacity”.[19]

“The requirement is for the court to consider both wishes and feelings. The judge placed emphasis on the fact that AB’s wishes were not clear and were not clearly expressed. She was entitled to do that but the fact remains that AB’s feelings were, as for any person, learning disabled or not, uniquely her own and are not open to the same critique based upon cognitive or expressive ability. AB’s feelings were important and should have been factored into the balancing exercise alongside consideration of her wishes”.

Even once capacity for a particular decision is lost, the MCA continues to respect the value of autonomy in many ways. Everything practicable should be done to help someone attain capacity[20]. Any decision that can reasonably be deferred until capacity is recovered should be so[21]. And in making a best interests decision, P should be not only permitted but encouraged and supported to participate as fully as possible[22]; and, crucially[23]:

S4(6) … must consider, so far as is reasonably ascertainable—

(a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b) the beliefs and values that would be likely to influence his decision if he had capacity, and

(c) the other factors that he would be likely to consider if he were able to do so.

I have seen cases in which a note has been made: “if Bob has capacity, ask him what he wants”. No! Ask him anyway! What he wants does not stop mattering, even if he does now lack capacity to simply make the decision for himself.

Mr Justice Peter Jackson put it more eloquently[24]:

“… a conclusion that a person lacks decision-making capacity is not an ‘off-switch’ for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important.”

That case, Wye Valley NHS Trust v B, is a prime example of the court’s approach to best interests decisions, the individuality of the patient and respect for their wishes, even in incapacity.

Mr B was a 73 year-old with a long history of mental illness, diagnosed as paranoid schizophrenia, and poorly controlled type 2 diabetes, for which he had typically bounced between acute hospitals who struggled to deal with his mental health and mental health admissions which could not readily meet his physical health needs. For many years he had heard auditory hallucinations of the voices of angels directing his (non)compliance (“If the Lord says it’s no, it’s no.”) and of the Virgin Mary, who was persuading him to become a Catholic[25].

A chronic foot ulcer developed and became infected, for which he refused treatment other than allowing his dressings to be changed. When his bone became infected the treating trust applied to court. The medical evidence was that his infection would be fatal within days, but with successful amputation he would be expected to live for another 3 years.

Mr Justice Jackson found that Mr B lacked the capacity for the decision about the treatment, and so had a best interests decision to make. The judge went to meet him, and recorded that Mr B told him:

“I don’t want an operation.

I’m not afraid of dying, I know where I’m going. The angels have told me I am going to heaven. I have no regrets. It would be a better life than this.

I don’t want to go into a nursing home, [my partner] died there.

I don’t want my leg tampered with. I know the seriousness, I just want them to continue what they’re doing.

I don’t want it. I’m not afraid of death. I don’t want interference. Even if I’m going to die, I don’t want the operation.”

The trust argued that little weight should be given to Mr B’s wishes because he lacked capacity, which the judge accepted only to the extent that, of course, his wishes would have been entirely decisive if he had capacity. The judge refused to ignore the religious aspects of Mr B’s beliefs, saying that they were

“…an inextricable part of the person that he is. In this situation, I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.[26]

The Judge concluded, poignantly and eloquently, in a passage I respectfully quote in full:

  1. “Having considered all of the evidence and the parties’ submissions, I have reached the clear conclusion that an enforced amputation would not be in Mr B’s best interests.
  2. Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin[27]. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack.
  3. Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.
  4. I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.
  5. The application, which was rightly brought[28], is accordingly dismissed”.

I find this a very powerful and moving account of the weight to be put on Mr B’s autonomy, notwithstanding his lack of capacity to make the decision for himself.

There are also some practicalities underneath this as well, of course. In reality, the prize here was another 3 years of life, which was attainable only with a good recovery and full co-operation with rehabilitation. With an unwilling and unco-operative patient, the real benefits may be much smaller or less likely, or both, and this must be taken into account in a real world view of the best interests of this patient, including how compliant he will be. If ever greater coercion is to be required to deliver treatment, where that’s even feasible, we must question more stringently whether that is still in P’s best interests, and (to the extent that it might constitute restraint or a deprivation of liberty) necessary and proportionate.

It is tempting to look at the recent trend of the case law and conclude that the “best interests” test is in fact coming ever closer to a “substituted judgement” test where P’s wishes are effectively decisive.

There are certainly a number of those cases[29], and of course it is in keeping with our general social and cultural movement towards putting ever greater value on autonomy.

But there are still plenty of cases in which a medical treatment decision is made, in the face of P’s indifference or opposition, to impose treatment including being brought into hospital coercively if need be, or to be placed or kept in residential care against their wishes, in their best interests[30].

For all the weight properly given to them in many recent judgments, there is no precedence accorded to P’s wishes, and indeed no hierarchy at all, in the list of factors set out in MCA s4[31].

And the concept of respecting P’s own wishes can itself become a bit slippery. For instance, the Act refers to P’s “past and present wishes” but gives no guidance how to balance or prioritise. When they are not in line, should more weight be given to Bob’s views prior to the loss of capacity, or his views now? Is our respect for autonomy owed more to the Bob who would have said “yes” before his accident, or to the Bob who is saying “no” now? What about the elderly man, a lifelong ethical vegetarian who, after a stroke or in dementia, now says that he wants a bacon sandwich?

And if we reach a view that our priority is toward the views of the person before they lost capacity, how can we make any sense of that for someone with a lifelong learning disability, for example? Can we conjure up the person’s views absent their learning disability, any more readily than we can imagine an unmusical Mozart?

Putting the appropriate weight on P’s own wishes, feelings, values and beliefs can be easier said than done. But you can be pretty sure that things will not go well (either for P, or the organisation when challenged about it later) if it is not a question that gets the appropriate thought and care.

 

Who decides?

The starting point, of course, is that if you have capacity to make a particular decision (and we should assume that you do[32]), then it is yours to make. And that includes the authority to make a binding decision now for the future to refuse particular medical treatment in the event that capacity is lost. This is an Advance Decision to Refuse Treatment[33] (ADRT). Note that you cannot demand treatment in future, any more than you can demand treatment now, though of course anything you say about what you would like to happen in future will be helpful for best interests decision makers, and should be given proper weight in choosing among the actual available options.

You can also appoint someone to be the best interests decision maker for you, through a Lasting Power of Attorney.

There have been various forms of power of attorney in the past, focussed on managing property and money. Prior to the MCA, an Enduring Power of Attorney (EPA)[34] could be appointed for dealing with your finances.

But the MCA introduced new “Lasting Powers of Attorney” (LPA)[35], and provided for these to come in two flavours: property & affairs, or health & welfare.

A property and affairs LPA can run while the donor has capacity for those decisions, simply allowing the convenience of sub-contracting that work. Health & welfare LPAs only come into effect when the donor has lost capacity for the relevant decision themselves. Obviously, granting an LPA to my partner does not entitle her to allow doctors to treat me against my wishes while I can still make that decision for myself!

The donor of an LPA must have capacity to make the LPA when it is made. Naturally, there is a limit to how far a professional faced with an LPA can be expected to play Poirot about the state of the patient’s mind when the LPA was granted, potentially years ago, to assess if it is kosher. But you might reasonably raise an eyebrow when presented with an LPA purportedly granted by a patient who lacks capacity now for a care decision as a result of a profound and long-term learning disability.

And, of course, because making an LPA is simply someone bestowing certain decision-making authority onto their nominee, we can:

  • Retract it at any time, while they still have capacity to do so
  • Limit the scope of the decision-making authority – saying it applies to some decisions and not others (it will not confer the power for decisions about life-sustaining treatment unless it explicitly says so); and
  • Impose any conditions or restrictions, including provisions that more than one attorney is appointed and if so whether they can make decisions individually, or only jointly.

When an attorney does become the decision-maker, they are still constrained by the legal framework of the MCA, i.e. they can only make a decision in the donor’s best interests, and they are subject to all the duties of appropriate consultation (see below) to make a best interests decision as any other best interests decision-maker, including health or social care professionals. And so, though the legislation and court judgments talk of the LPA authorising the attorney to “give consent” to treatment, I really don’t feel comfortable with that way of thinking about it.

“Consent” to me is all about the person themselves, and the ability to exercise autonomy fully and, at times, unwisely. An attorney can only make a best interests decision, and so I personally find it makes much more sense to speak of them as becoming the best interests decision-maker, not as someone giving “consent”.

If you are unsure whether there is an LPA, or about the validity or scope of it, or whether the attorney is acting in the patient’s best interests, it is the role of the Office of the Public Guardian[36] to police this.

So if you have a person before you and a best interests decision to make, and someone presents themselves as holding a power of attorney, that is the start of a discussion, not the end of it. You will want to see the document itself to check that:

  • it is an LPA applicable to health & welfare decisions (not an EPA or an LPA for property & affairs)
  • it has a stamp to show it has been registered with the OPG (otherwise it is not valid)
  • the decision in question is within the scope of the LPA granted, including whether it explicitly includes life-sustaining treatment, if that is the issue
  • whether it is a sole or joint attorney and any restrictions on their decision-making.

And while there being a valid and applicable LPA essentially makes the attorney the best interests decision maker, the best interests decision-making process is still required to be collaborative and inclusive (see below), just as it would be if there were no LPA. In my experience a lot of time and effort can be spent worrying about whether or not there is an LPA, or whether it is valid, and it doesn’t really make a lot of difference in the end, for reasons I’ll cover below.

Before that, though, let me get on my biggest hobby horse: the role of “next of kin” in best interests decision-making.

“Next of Kin”

To illustrate this point when I am giving training, I often put up a picture of “the Simpsons” family tree and give the assembled health or social care professionals a moment to consider: “who is Homer’s ‘next of kin’”?

There will always be some who say his wife, Marge, fairly confidently, while a few tentatively go for his father, Abraham. Others, rightly, will sense a trap.

In English and Welsh law, there is no such thing as “next of kin”[37].

This comes as a surprise to most people, and this misconception is one of the biggest causes of difficulty and dispute in this context. There is no such thing as “next of kin”. It is, in law, literally meaningless.

We tend to use the phrase to mean the person who gets your stuff if you die intestate (i.e. without a will), and so it feels like it works as a proxy for your nearest and dearest. Indeed, the Inheritance of Estates Act 1925 does set out in table form a hierarchy of family relationships who will inherit in case of intestacy. But it does not use the words, or define, “next of kin”, and it has nothing to do with making decisions about your health or care.

Which begs the question why the phrase is used so widely and repeatedly throughout health and care, including in all kinds of official documentation?!

The reality is that it is used, understandably, as shorthand for a different, entirely appropriate set of questions – “Who would you like us to call? Who do you want us to share information with? Who do you want involved in decisions about your care?” I like much better the growing practice of recording “ICE” (in case of emergency) contact details, but our habitual reference to “next of kin” is deeply engrained and may take generations to shift.

But it is wholly wrong to think of anyone being “next of kin” as if thereby acquiring some form of decision-making authority over an adult who lacks capacity for decisions for themselves. Actually, it can be very damaging and harmful. An elderly patient should not be discharged from hospital to die in great pain at home with agonising pressure sores, on a “best interests” basis where she couldn’t decide for herself, solely because that’s what her son wanted and he was “next of kin”.

I think it can also put an unfair and intolerable pressure onto the person who may identify themselves as “next of kin”, if they feel that they bear sole responsibility for a grave decision about a family member’s care or medical treatment.

Instead, coming to a best interests decision for an adult who lacks capacity to make a care or medical treatment decision is a collaborative process, and it remains so even if there happens to be an LPA that appoints a family member (whether or not they might consider themselves “next of kin”) as an attorney for health & welfare.

MCA s4 sets out how best interests decisions should be made, and s4(7) mandates that the best interests decision-maker:

“must take into account, if it is practicable and appropriate to consult them, the views of—

(a)   anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,

(b)  anyone engaged in caring for the person or interested in his welfare,

(c)   any donee of a lasting power of attorney granted by the person, and

(d)  any deputy appointed for the person by the court,

as to what would be in the person’s best interests and, in particular, as to the matters mentioned in subsection (6)”.

Section 4(7) is massively important, and I’ll pick a few key points out in turn.

In making a best interests decision, the decision maker must take into account the opinions of a list of specified groups of people, unless it is impracticable or inappropriate to do so.

It might be inappropriate to consult someone who would otherwise be on the list if, for example, the patient had said, or behaved in a way that showed, that they would not want a particular individual to be involved in such decisions. Bear in mind that asking for input into a care or medical treatment best interests decision involves telling someone a bit about the situation and options, necessarily breaching the patient’s confidentiality.

A capacitous patient can consent to sharing information, of course. But sharing information can also be justified, in their best interests, where the patient lacks capacity for that decision.

And in some cases, Bob may still be able to make his own decisions about sharing information (since it is a different and perhaps simpler decision than the treatment decision for which he lacks capacity), and decide that he wants his son to be involved in decisions, but no confidential information should be shared with his daughter. That would be his right, and must be respected.

Anyone with an LPA or any deputy[38] should be consulted, and so to my mind it doesn’t really matter for this purpose whether the attorney (or deputy) meets all the criteria to be the decision-maker themselves or not; they are entitled to be involved in the decision-making anyway.

And anyone who might have an LPA, even if invalid / inapplicable, is very likely to be in the crucial catch-all category – “those engaged in caring for P or interested in his welfare”. Note that it does not say “family” and it does not, so help me, say “next of kin”. It is deliberately wide, and it would equally include the neighbour who has known Bob for 40 years, or the guy who has a pint with him every day, as much as the estranged daughter. There’s no “top trumps” and no exclusivity; the duty to consult (as far as practicable) includes anyone who can help the decision-making. You need not (as you might if trying to identify a singular “next of kin”) worry whether the son in Australia trumps the cousin who lives next door. In many cases it may be perfectly reasonable to rely on one family member to speak for the family as a whole, but don’t forget that friends, carers and others might know Bob just as well as anyone else, and in some cases better. The point is to make the right best interests decision for Bob, so the people who know him best are the ones to involve, which is not always the same as the closest family.

And don’t forget that the professionals involved are also “those engaged in caring for P or interested in his welfare” and so, in my view, if a family member is the decision-maker by virtue of an LPA, for example, there is an equal obligation on them to consult with clinicians, social workers or carers, just as there is on professionals to consult with family and others if they are the decision-maker.

Knowing the individual is the key. You are not just asking someone what they think should be done for the best. The consultation duty in s4(7) is aimed “in particular as to the matters in subsection (6)”, which is all about Bob himself, his own wishes and feelings, values and beliefs.

This consultation duty is all about helping the best interests decision-maker make the right decision for Bob, as an individual. Not for a typical patient with condition or care needs X and treatment / care options Y and Z. So, when it comes to the consultation duty under s4(7), the questions you should ask are “tell me about Bob”, “what is important to him”, “what do you think Bob would want in this situation?”

This should generate a collaborative approach and tone, and if there is any sense of either family or professionals being ridden roughshod over by the other then something is going badly wrong.

Given the duties of consultation on the decision-maker, I am not convinced that it makes an enormous difference whether the decision-maker is a professional with an obligation to consult the friends, family and others, or it is a family member (perhaps due to an LPA) with the same obligation to consult with other family and friends, as well as the professionals, carers and others.

Where there is an LPA, professionals should form their own view of P’s best interests to stress test the position taken by the attorney, and then discuss any disagreement. It may well be that the attorney knows something about P that the professionals do not – that is why they are an attorney.

But in either case, LPA or not, any substantial dispute must be referred to the Court of Protection, and any concerns about whether an attorney is acting in the patient’s best interests can be referred to the Office of the Public Guardian, especially if this is a pattern.

Key Points

  • Before worrying about any issues of deprivation of liberty in this context, make sure that you are making the underlying decisions in the right way, per the MCA.
  • Be especially careful:
    • not to be caught out treating capacity as if generic, losing sight of the particular decision/s that need to be made, and the actual available options;
    • not to be taking the safest option, or intervening too readily, simply from an instinct to protect;
    • and to be involving the right people in the decision-making process: those who know Bob best, and Bob himself, giving appropriate weight to his own wishes and feelings, values and beliefs.
  • Making decisions in that way will feel collaborative and open minded; if your situation feels adversarial, entrenched or dogmatic, it may be helpful to take a step back, involve others, and to consider whether some form of mediation or an application to the Court of Protection is appropriate.
  • Even without a dispute, the Court of Protection may be needed, for example to authorise a deprivation of liberty that falls outside the scope of DoLS, but in any case an application can and should be approached in a collaborative and non-adversarial way, and the key is to be getting the underlying MCA decision-making right.
  • For this reason, by far the best preparation to deal with deprivation of liberty issues (including any potential reform) is first to focus on your MCA policy, regular training, and reflective practice.

We will see in Chapter 3 a case study of getting this badly wrong, and in Chapter 15 some of the liabilities that can bring.

Before that, let’s move on to put the issue of deprivation of liberty into the wider context of the MCA.

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[1] This chapter assumes that we are dealing with over 16 year-olds, who lack capacity to make the relevant decisions, so within the scope of the MCA. Many of the points still hold good, by analogy, to children under 16, though of course there you are dealing with the Children Act 1989 rather than the MCA, see Chapter 10. There are also cases where there may be a deprivation of liberty for someone with capacity, using the inherent jurisdiction, see Chapter 14. But the great bulk of cases of deprivation of liberty for adults in health and social care are rooted in the MCA.

[2] The MCA uses “P” to refer to the person who may lack capacity, and I’ll do likewise, though I’ll use a person’s name for a bit more humanity where appropriate.

[3] I have written about this in greater detail in A Practical Guide to the Law of Medical Treatment Decisions, Law Brief Publishing, September 2020. If you happen to have read that already and can live without the recap, feel free to turn ahead to Chapter 2!

[4] I have a picture by my front door based on the Dr Seuss version of this, that you can choose your own path, thanks to the brains in your head and the feet in your shoes.

[5] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/
attachment_data/file/497253/Mental-capacity-act-code-of-practice.pdf

published 2007.

[6] At the time of writing, the Ministry of Justice has committed to updating the MCA Code of Practice, but there is no sign of the timescale. An updated version of the update MCA Code that was subject to consultation in Spring 2022, but the document dealt with the LPS as well, which have since been dropped, for now at least. See Chapter 17.

[7] There are some significant exceptions, including capacity to contract, make gifts and retrospective assessment of capacity to make a will.

[8] MCA s28

[9] Other issues are sometimes described as “excluded” from the MCA – for instance decisions about marriage, sex or voting, but I think that is potentially misleading. The MCA still applies or those decisions to determine if P has the capacity to make that decision for themselves or not, but if they do lack capacity for that kind of decision then the MCA prohibits any best interests decision making. So if P lacks capacity for a decision about sex there is no such thing as “best interests sex”, and any sexual activity without capacity, and therefore without consent, may be an offence under the Sexual Offences Act 2003. As you can imagine that is a proper can of worms, for instance, in cases of elderly couples married for many years still cohabiting and sleeping together, if dementia, for example, has undermined the capacity of one or both to consent to any sex. Or a young couple where one or both have a learning disability and they willingly have sex but one or both lack the capacity to consent for this to be lawful. This is not an entirely idle digression, since in those circumstances the authorities may feel obliged to intervene and impose restrictions on contact or time alone for the couple which can contribute to the possibility of a deprivation of liberty, which in turn needs authorisation.

[10] See MN v ACCG, [2017] UKSC 22. The Supreme Court rejected an argument by a family of a young man with a learning disability that particular aspects of his care package should be changed as being in his best interests when in reality what they wanted was not practically or financially available.

[11] [2013] UKSC 67, at paragraph 39 https://www.bailii.org/uk/cases/UKSC/2013/67.html

[12] Local Authority X v MM [2007] EWHC 2003 (Fam). The quote is at paragraph 120. https://www.bailii.org/ew/cases/EWHC/Fam/2007/2003.html

[13] Emphasis added, because that is a powerful quotation, often referred to in later cases.

[14] Re M (best interests: deprivation of liberty) [2013] EWCOP 3456 https://www.bailii.org/ew/cases/EWHC/COP/2013/3456.html

[15] [2012] EWCOP 2136 KK v STCC [2012] EWCOP 2136 (26 July 2012) (bailii.org)

[16] A lecture to the South Central Regional Branch of Solicitors for the Elderly, entitled “Safeguarding and Dignity: Protecting Liberties – When is Safeguarding Abuse?” (published in Brunswick Mental Health Care Review 2012 Vol 7 issue 18)

[17] Cardiff City Council v Peggy Ross (2011) COP 28/10/11 12063905 http://www.mentalhealthlaw.co.uk/media/Cardiff_Council_v_Peggy_Ross_%282011%29_COP_28-10-11_12063905.pdf. The case attracted significant media coverage.

[18] I have always been wary of use of “insight” as a substitute for the correct test of capacity. Very few of us would say that we are a below average driver.

[19] AB [2019] EWCA Civ 1215 at paragraph 71 and 76. https://www.bailii.org/ew/cases/EWCA/Civ/2019/1215.html

[20] MCA s1(3).

[21] MCA s4(3).

[22] MCA s4(4).

[23] MCA s4(6).

[24] Wye Valley NHS Trust v B [2015] EWCOP 60 https://www.bailii.org/ew/cases/EWCOP/2015/60.html

[25] Although, in a line I love, he declined to join any organised religion because, he said, “I’m not fussy”.

[26] But of course case law can often be found pointing the other way on the same issue, for example in Manchester University NHS Foundation Trust v DE [2019] EWCOP 19 at para 28 https://www.bailii.org/ew/cases/EWCOP/2019/19.html

[27] Used, no doubt, in the lay sense, but this is the one line of this judgment I would, with the greatest respect, quibble with, for reasons I’ll explain shortly!

[28] This is worth noting. Though he rejected the trust’s arguments that the amputation was in B’s best interests, the judge said it was absolutely the right thing to do to bring it to court for a decision.

[29] See for example Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26 https://www.bailii.org/ew/cases/EWCOP/2020/26.html

[30] E.g. NHS Foundation Trust v QZ [2017] EWCOP 11 https://www.bailii.org/ew/cases/EWCOP/2017/11.html

[31] Though in 2017 the Law Commission did propose a reform to MCA to that effect, https://s3-eu-west-2.amazonaws.com/lawcom-prod-storage-11jsxou24uy7q/uploads/2017/03/lc372_mental_capacity.pdf recommendation 40, at para 14.2 onwards. See Chapter 17.

[32] MCA s1(2).

[33] MCA s24-26, which includes the formal requirements that to refuse life-saving treatment in this way it must be explicit about that, and be in writing, signed and witnessed.

[34] Enduring Powers of Attorney Act 1985

[35] MCA s9-14.

[36] https://www.gov.uk/government/organisations/office-of-the-public-guardian

[37]Although, in fairness , in coming to write this down, I now realise that I owe an apology to anyone I did this with previously, since the Simpsons are American, and in the US there actually is a statutory definition of next of kin, unlike here. In future I’ll use the royal family. Sorry.

[38] I have not included deputies here – essentially the same role and restrictions as an LPA, but appointed by the court – as they are extremely rare for health and welfare decisions.