The Mental Capacity Act (MCA) is a well designed, useful piece of legislation that governs decision-making for people who lack the mental ability to make decisions (in England and Wales). Unfortunately it has been blown right off course by well-meaning but clinically inappropriate guidance which has rendered it unused and unusable. The principles of the Act are simple – the decision should be guided by all the factors that the person would have used – and the law itself is straightforward. The associated guidance, such as the Code of Practice published by the Ministry of Justice and the many other guidelines published by other organisations have all conspired to make the enactment of the principles bureaucratic and time-consuming. The guidance takes no account of clinical realities. It is no surprise that that the Act that is ignored or, sometimes, applied incorrectly. This blogpost explores this problem and suggests that the Act can only be implemented by incorporating its principles into routine clinical practice. A MindMap summary can be seen and downloaded here.
Context – Legal
The Mental Capacity Act 2005 (in England and Wales; available here) was designed to legitimise decisions made on behalf of people who lacked the capacity to make their own decisions; other UK countries have similar Acts. The Law Commission, who developed the Act, recommended a ‘best interests’ approach; the decision is made by the healthcare team, not family members nor anyone else (other than appointed deputies); and the decision is reached by using, as far as can be known, the factors and the importance given to those factors that the patient would have used. This is a more subtle approach than asking ‘what would the patient decide?’. This approach establishes how the patient would have decided, to tease out his reasoning process, and then uses the process that the patient would have used, on behalf of the patient.
The Act makes it clear that the clinical team is responsible for making the decision. The team is responsible for establishing, as far as practical, how the patient would have set about making a decision. It will approach family, friends and anyone who knew the patient well to obtain this information. It then uses this information to make a decision. The team should record, in sufficient detail to justify the decision, what factors were considered and how they led to the decision.
The Act is written in a legal format. With Acts of this nature, it is normal practice to set out a Code of Practice, transforming the legal text into useful, usable guidance and explanations. (here) Given that this Act applies widely across Health and Social care services, and affects very large numbers of patients, many organisation have also produced guidance.
Unfortunately, it is well established that the clinical application of the Act is patchy, and generally is notable by its absence. (here) The mandatory training about the Act in most organisations, and the guidance produced have both singularly failed to establish good clinical practice. Specific examples of failure reach the courts – patients are harmed. (here)
– what, how many.
It is also important to consider the clinical and social care context where the Act is applied: the people (patients and clients) involved (numbers, locations, etc), the types of decisions that need to be made, and how often decisions need to be made for other people.
One example illustrates both the frequency of decision-making when caring for someone who has long-standing loss of capacity, and suggests three different types of decision. This was a study of providing care to a person with learning disability (intellectual impairment). The report (here) illustrated just how frequently decisions need to be made, and how the process undertaken was nothing like that described in guidance. It also suggested three types of decision: every-day decisions, life-plan decisions, and health-care decisions.
Every patient’s healthcare is within the scope of the Act, in that the clinician needs to be assured that the person has capacity. Each year there are approximately six million admissions to hospital in England alone. (here) While many of these will be healthy people with full capacity, many will not. Studies suggest that around 50% of inpatients in acute care wards lack capacity. It is obvious that the process of assessing capacity has to be integrated into normal clinical care processes; any separate process will be overwhelmed.
Moreover, there are approximately 490,000 care home residents of whom 343,000 (70%) have dementia. (here) Many of these residents will experience acute illness, and may be considered for treatment or hospital admission. Both of these decisions should consider a person’s best interests. There are an estimated 192,000 admissions a year from care homes. (here) There are an estimated 11,000 care homes in England; in principle each care home should have undertaken one best interests process on a hospital admission every three weeks. This is quite apart from the many other significant decisions made on each patient in care.
Considering people left with a prolonged disorder of consciousness, and assuming that clinical teams follow national guidance, I have estimated (here) that, in a population of 500,000 people, each year there will be:
- A total of 50 initial best interest meetings on people entering a Prolonged Disorder Of Consciousness, on an ongoing basis each year:
- 25 will be on people with acute onset brain damage, and
- 25 will be on people with a progressive brain damage.
- 45–70 follow-up best interest meetings a year.
It seems unlikely that the guidance published has taken any of these facts into account.
The law, as published, can be downloaded here. I will summarise four important points that it makes, primarily using quotes from the Act because the Act expresses them so clearly.
The patient needs to be “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.” The important points are (a) inability to decide and (b) a cerebral disorder. However there remains a large area open for debate in relation to mental health problems which could equally well be described as a disturbance in the functioning of the mind. There is currently no resolution to this inconsistency.
To be considered as lacking capacity the patient needs to meet this criterion: “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).“
The Act states that the person making the decision “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.“
Most of the information needed will come from family members and friends, but the Act sets out some additional specific people who should be consulted: the 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)” [This refers to the third point above, concerning best interests.]
These statements from the Act are very clear and scarcely need additional guidance. The whole Act includes 69 paragraphs, covering 38 pages; I have taken material from four paragraphs.
Only one important additional clinical point is made: unwise decisions cannot be used as evidence of a lack of capacity. The remaining material in the Act is not unimportant, but it is of little direct relevance to the practice of determining best interests.
The most important guidance needed by healthcare workers is about how to acquire and use the information needed to decided on best interests. It is not given in the majority of guidance documents (if any). In the 300 pages of the Code of Practice (here) and the 62 pages of the Office of The Public Guardian’s guide, (here) there is no practical help on how to obtain this information, or how to evaluate its validity as evidence.
The only guidance that I am aware of is entitled “Guide for conversations with family/friends about life-sustaining treatments, ‘Best interests’ and the incapacitated person’s wishes.”. It is available from the Coma and Disorders of Consciousness Research Centre and will be found here.
Furthermore, the guidance is usually framed as if there is a single decision with a binary outcome (A or B), not recognising that many clinical decisions are much more nuanced (A or B or C, and if B fails then A or E but if A fails, then F or nil). The Act only refers to the decision, and the Act does not state or imply that there is a binary answer. The Act refers to the patient having “information about the reasonably foreseeable consequences of (a) deciding one way or another, or (b) failing to make a decision.”
Most guidance available either gives a more detailed explanation of the legal aspects of the Act, or gives expanded advice on the process needed. The legal explanation provides more legal information, but it is not directly relevant clinically to a person using the Act. The advice on process is an interpretation of how the the Act might be used. It is not derived from the Act itself. It is usually presented as a series of steps and/or check-lists.
Using guidance from others or their own guidance, most service organisations have also undertaken training of all staff. Consequently, clinical staff who have to use the Act are given training based on guidance that either focuses on explaining the legal aspects of the Act, or dictating a bureaucratic, process-driven approach to the Act. It seems unlikely that training has focused on how to use the principles set out in the Act with an actual patient or social care client.
Consequences of guidance.
House of Lords report.
The House of Lords enquiry into the implementation of the Act in 2014 (printed version can be downloaded from here) described the Act as visionary but concluded:
“Our findings suggest that the Act, in the main, continues to be held in high regard. However, its implementation has not met the expectations that it rightly raised. The Act has suffered from a lack of awareness and a lack of understanding. For many who are expected to comply with the Act it appears to be an optional add-on, far from being central to their working lives. The evidence presented to us concerns the health and social care sectors principally. In those sectors the prevailing cultures of paternalism (in health) and risk-aversion (in social care) have prevented the Act from becoming widely known or embedded. The empowering ethos has not been delivered. The rights conferred by the Act have not been widely realised. The duties imposed by the Act are not widely followed.”
They discuss the reasons and recommended:
“Our principal recommendation to address the failure to embed the Act in every day practice is that responsibility for oversight of its implementation should be given to a single independent body.“
This recommendation has not been carried out. The situation remains much as it was. Although I obviously have not undertaken research on the scale of the House of Lords, it is my experience that the Act is no better implemented now than it was in 2014. One commonly finds written, in hospital notes, “Patient lacks capacity. Seen in best interests” without any supporting evidence (a) that capacity has been assessed and/or a lack of capacity has been demonstrated (usually it is obviously lacking, but there is no formal record available) or (b) that any evidence has been considered and used to reach the conclusion about best interests.
Perhaps the most compelling evidence of the failure of health services to take proper notice of the Act is the absence of any system within notes to collect and collate relevant information and the lack of any system to record the results of any best interests meetings and decisions. This is true of both paper and electronic systems.
This is not to say that the Act is never considered. There are individual excellent examples of a full appreciation of the Act and its appropriate use in clinical practice. The fact that such examples are memorable is evidence of the generally poor level of practice.
I will give a recent example and failure to understand the Act, and also illustrating risk-aversion which is also common in healthcare.
A patient who had capacity made it clear that he did not want a treatment continued. The funding organisation called a Best Interests meeting to review this, despite being told the patient had capacity. At the meeting it was agreed that the person had capacity, and had made the decision. Nevertheless, those attending the meeting were asked to sign a record of the meeting on forms framed around the Act, that stated and implied that the decision was made in the patient’s best interests. The representative of the funders said the form had to be signed because it validated the clinical decision not to continue the treatment. It was the patient’s decision, not a decision made by the clinical team.
Consequences of guidance.
Observed practice shows a misunderstanding of the Act and/or an over-reliance on prescribed processes in many ways.
Expert assessment of capacity.
Clinicians may, sometimes, recognise that a person lacks capacity but they do not feel able to state it without expert advice. The guidance and training should make it clear that any clinician should be able to judge the capacity of a patient to decide about the action being contemplated. For example, shared decision-making will rapidly reveal if the patient understands the relevant information, sufficiently to make a decision.
Many people think that they need to ask someone else to assess capacity, such as a psychiatrist, a clinical psychologist, or a speech and language therapist. As assessment of capacity depends upon giving accurate information concerning the decision. Thus, only the clinician responsible for acting on the decision can give the information and assess the patient’s capacity.
Not making a decision is a way-out.
For the harder, more challenging decisions there is an assumption that not raising the issue, and just carrying on as before, avoids the need to consider best interests. This is, of course, untrue. Deciding not to decide is itself a decision and has consequences. This is recognised in the Act where it sates that the patient must be aware of the consequences of not making a decision. (see quote from the Act above)
This approach has recently been severely criticised in the Court of Protection; see (here).
“Duty of care.”
A phrase that I have heard used, and seen written, is that an action must be undertaken, whatever family members think a patient would want, because the healthcare team “have a duty of care” and, therefore, will carry on treating. There is no ‘duty of care’; there is a requirement only to act either if the patient gives their consent or if a formal decision has been made, according to the Act, that the action is in the patient’s best interests. The law does recognise that acute, unexpected emergencies are an exception.
“Next of Kin”
Despite the so-called mandatory training about the Act that has been carried out for over a decade, there is still a widespread belief that ‘next of kin’ can decide, or at least can give permission for an action. This belief is reinforced by medical records continuing to ask about and to record a named person as ‘next of kin’. In law, no such status is recognised. No person has any preferred status. Family and friends are all equal, and none can ‘give consent’ for any action.
It is worth emphasising that no family member can restrict who provides information to the clinical team about the person’s past or present wishes, beliefs, feelings, values or other relevant factors appertaining to the patient’s best interests. There is no ‘next of kin’.
Only one decision can be considered.
Best interests and meetings are generally discussed as if there is only a single decision to make. In many clinical consultations, several options and courses of actions will be discussed. The formally agreed first action is often the first in a series, and the decision carries many contingent implications. Agreeing to have a screening test is only sensible if the person also agrees to the follow-up action if the test is positive. While it is not essential to agree completely, it is usual to accept the consequent actions as part of the initial decision.
Moreover, people with capacity can set out decisions about what should happen if a possible future event happens, not only in a Advance Decision but also through, for example, a ReSPECT form. (here) There is no statement in the Act forbidding this.
Other problems that are still present include:
- a continuing unawareness of the need to assess capacity. The lack of any specific place within the notes to record this, and the belief that others, usually other ‘experts’ have to do it both contribute to this;
- a failure to understand that existing multi-professional clinical teams can undertake the whole process as part of normal clinical work, without needing to involve others, to organise very specific meetings etc.
- The only requirement is some documentary record, and the lack of any place within the notes to keep this contributes to this failure;
- a failure to understand that assessment of capacity is a clinical judgement and, specifically, that there are no tests of capacity. (here)
- a perception, engendered by bureaucracy and checklists, that much time (days/weeks to organise; hours to undertake) is needed. This leads to decisions being made without considering best interests;
- being daunted by the ‘law’, believing that anything done will be subject to a legal inquisition;
make the process ‘normal’ not exceptional
The solution is to normalise the processes of assessing capacity, supporting patients when making decisions, and, when necessary, making the decision for them. The lack of capacity should not be considered binary; the extent to which someone can actually understand and use information varies along a spectrum. Therefore the response should also vary, and not be binary; there should not be an identified, completely separate path for some people with everyone else being managed differently.
We should record, as a routine, an estimated measure of capacity varying from ‘understands and uses all information about any complex decision without difficulty’ through a range of levels illustrating (a) complexity that can be managed and (b) degree of support, or time needed to ‘cannot make any decisions’. Where possible, this should be based on concrete examples such as ‘had the capacity to decide on an operation to use an external fixator for fractured tibia, but needed to see pictures to understand it’.
In the early stages of an illness, before experience has accumulated, broader statements on likely difficulties would warn others to check when making a decision.
Record information about wishes.
As a routine, certainly for people who obviously have or are at high risk of having reduced capacity, information about wishes, feelings, belief, values and other factors should be collected from family and friends from the outset. This would be facilitated by have somewhere specific to document this information. It has many advantages.
It introduces the patient and family to the concepts of capacity and best interests, but does so as a part of normal clinical practice just as collecting telephone numbers and information about dietary preferences is. It allows family and friends time to reflect on what is important to the patient without doing so in a stressful situation. It could, in a well-structured system of medical notes, make it much easier to make a rapid but well-informed best interests decision if needed.
The practice of shared decision-making, where the clinician and patient discuss the relevant facts, and advantages and disadvantages of different options will, almost inevitably reveal a person’s capacity, and may well also show what support is needed to achieve capacity to make the decision.
If shared decision-making were the expected normal, and if it were undertaken and documented, it would be clear who had capacity and what the evidence was. It would also become clear who needed to have the decision made using a best interests approach. The conversation would, however, also help through revealing present wishes, and possibly other factors of importance.
Shared decision-making with others.
An extension of shared decision-making to involve the family, discussing how the patient would make the decision, is a natural extension of shared decision-making with a patient and could include the patient. It would be based on exactly the information outlined in the Mental Capacity Act.
In this way, the whole approach outlined in the Act becomes incorporated in normal clinical practice.
In this approach, about the only decision that needs a more formally organised, special best interests meeting is one where (a) the patient cannot contribute anything due to loss of consciousness or severe loss of cognitive and/or communicative abilities and (b) the decision includes as one option a choice that definitely will limit the length of life to a great extent compared to all other choices. Under these circumstances one needs to have a second opinion on the clinical evaluation (the patient’s current state, the availability of treatment, the prognosis) as recommended by the General Medical Council.
Advance Care Planning.
Patients with capacity are now often (but not routinely) asked about their views on possible future decisions such as cardio-pulmonary resuscitation, progressing to active ventilation or starting assisted nutrition and hydration. This is Advance Car Planning (here), and one example is the ReSPECT form.
Patients who lack capacity should also be enabled to benefit from this, to avoid decisions being made urgently that are against their best interests, made without considering what is in their best interests for lack of time or awareness of their wishes.
It would further normalise the situation to undertake Advance Care Planning in advance, setting out what should happen in the event of:
- an immediate crisis, such as cardio-pulmonary arrest
- an urgent crisis such as probably sepsis or severe chest infection, or ruptured aneurysm
- the development of a new illness potentially requiring investigation and treatment, such as gallstones or abdominal cancer
One other aspect of the Mental Capacity Act that is often overlooked is the need to review ongoing treatment. A person with capacity will, to a greater or lesser extent, review whether or not they wish to continue treatment they are taking or being given. For example, people may decide that a course of chemotherapy is too unpleasant to continue it, however beneficial it might be.
Therefore it is important, on an appropriate regular basis, to reconsider whether any ongoing treatments are still in a person’s best interests. This should always occur if there is any change in the person’s clinical situation, or if new information comes to light about his wishes, feeling, values, beliefs and other factors. Otherwise there should be a routine review of all ongoing management on a regular basis, somewhere between every three months (in early stages) and 12 months (later).
In this post I have proposed that the Mental Capacity Act 2005 should be seen not as a law that either constrains clinical actions or enforces clinical actions, but as good clinical advice on how to approach the management of people who cannot make fully informed decisions. I suggest that capacity is not a fixed state or a binary phenomenon, but it is relative to the situation and varies along a continuum. I argue that the best person to assess capacity is the clinician who needs a decision to be made, and that this arises naturally if a shared decision-making process is used. In this way, I hope to normalise the application of the law, making it integral to good practice rather than some additional, external and separate process that sometimes has to be used. Last I suggest that an improvement in the layout or structure of healthcare records, electronic or paper-based, would greatly facilitate this approach.
This post has explored the Mental Capacity Act 2005 and its application and use, mainly in the context of healthcare but the principles apply to social care also. It has tried to demystify the Act, emphasising that it is not something that should be used in exceptional cases, requiring specific exceptional people and processes. Rather, it is common sense clinical advice that applies at all times and in all circumstances; it is framed as Law because its effect is to legitimise clinical decisions and actions that are otherwise not allowed (in principle). Seen in this light, training is needed to improve day-to-day routine practice, with a focus on (a) shared decision-making which will reveal reduced capacity and the need for support or a best interests approach and (b) documentation both of the relevant information and of the process, sufficient to justify the decision. Further background on the concept of best interests can be found here.