Using the MCA in health services
The Mental Capacity Act (MCA) is a well-designed, helpful 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 off course by well-meaning but clinically inappropriate guidance, rendering it unused and unusable. The principles of the Act are straightforward – the decision should be guided by all the factors that the person would have used – and the law itself is plain. The associated guidance, such as the Code of Practice published by the Ministry of Justice and other guidelines issued by other organisations, have conspired to make enacting the principles bureaucratic and time-consuming. The guidance takes no account of clinical realities. Unsurprisingly, the Act is ignored or, sometimes, applied incorrectly. This blog post 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.
Table of Contents
Context - Legal
The Mental Capacity Act 2005 (in England and Wales; available here) was designed to legitimise decisions made on behalf of people who could not 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 clarifies 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 decided. It will approach family, friends and anyone who knows 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, setting out a Code of Practice is standard practice, transforming the legal text into practical, usable guidance and explanations. (here) Since this Act applies widely across Health and Social care services and affects many patients, many organisations 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 failed to establish good clinical practice. Specific examples of failure reach the courts – patients are harmed. (here)
Context: decisions - what, how many.
It is also essential 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 the frequency of decision-making when caring for someone with a long-standing loss of capacity and suggests three different types of decisions. This was a study of providing care to someone with a learning disability (intellectual impairment). The report (here) illustrated how frequently decisions need to be made and how the process undertaken was nothing like that described in the guidance. It also suggested three types of decisions: everyday, life-plan, and health-care choices.
Moreover, of the approximately 490,000 care home residents, 343,000 (70%) have dementia. (here) Many 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) England has an estimated 11,000 care homes; 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 progressive brain damage.
- 45–70 follow-up best interest meetings a year.
It seems unlikely that the guidance published has considered any of these facts.
The law, as published, can be downloaded here. I will summarise four essential points that it makes, primarily using quotes from the Act because the Act expresses them so clearly.
The patient must 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 critical points are (a) an inability to decide and (b) a cerebral disorder. However, a large area remains open for debate concerning 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 unambiguous and scarcely need additional guidance. The whole Act includes 69 paragraphs, covering 38 pages; I have taken material from four sections.
Only one crucial 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 determining best interests.
The most critical guidance healthcare workers need is acquiring and using the information required to decide on best interests. It is not given in most 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), practical help and how to evaluate its validity as evidence is absent.
The only guidance 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.
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 description provides more legal information, but it needs to be more clinically relevant to a person using the Act. The advice on the process is an interpretation of how the Act might be used. It is not derived from the Act itself. It is usually presented as a series of steps and checklists.
Using guidance from others or their own advice, 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. Training seems to have yet to focus on using 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 discussed the reasons and recommended the following:
“Our principal recommendation to address the failure to embed the Act in everyday practice is that responsibility for oversight of its implementation should be given to a single independent body.“
This recommendation has yet to be carried out. The situation remains much as it was. Although I have yet to research 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 a lack of capacity has been demonstrated (usually it is lacking, but there is no formal record available) or (b) that any evidence has been considered and used to conclude best interests.
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 strategy 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 excellent individual examples of fully appreciating the Act and its appropriate use in clinical practice. The fact that such instances are memorable is evidence of the generally poor level of training.
I will give a recent example and failure to understand the Act and illustrate risk aversion, which is also common in healthcare.
A patient with capacity made it clear that he did not want continued treatment. 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 the capacity and had made the decision. Nevertheless, those attending the meeting were asked to sign a record of the discussion on forms framed around the Act stating 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.
Clinical consequences of inadequate guidance
Observed practice shows a misunderstanding of the Act and an over-reliance on prescribed processes in many ways.
Expert assessment of capacity.
Clinicians may sometimes recognise that a person lacks capacity but 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 they need to ask someone else to assess capacity, such as a psychiatrist, a clinical psychologist, or a speech and language therapist. An assessment of ability depends upon giving accurate information concerning the decision. Thus, only the clinician responsible for deciding can provide the information and assess the patient’s capacity.
For the more demanding, more challenging decisions, there is an assumption that not raising the issue and carrying on as before avoids the need to consider the best interests. This is, of course, untrue. Deciding not to decide is itself a decision and has consequences. This is recognised in the Act, which states that the patient must be aware of the effects of not making a decision. (see the quote from the Act above)
This approach has recently been severely criticised in the Court of Protection; see (here).
“Duty of care.”
A phrase I have heard 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 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 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 consent to 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’.
Best interests and meetings are generally discussed as if only a single decision exists. Several options and courses of action will be addressed in many clinical consultations. The formally agreed first action is often the first in a series, and the decision carries many contingent implications. Deciding 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, it is usual to accept the consequent actions as part of the initial decision.
Moreover, people with the capacity can decide what should happen if a possible future event occurs, not only in an 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 the following:
- 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 standard clinical work without involving others, organising particular 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 capacity assessment is a clinical judgement and, specifically, that there are no capacity tests. (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 the best interests;
- being daunted by the ‘law’, believing that anything done will be subject to a legal inquisition;
Normalise best interests
The solution is to normalise the processes of assessing capacity, supporting patients when making decisions, and, when necessary, deciding for them. The lack of ability should not be considered binary; the extent to which someone can understand and use information varies. 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 for people who have or are at high risk of having reduced capacity, information about wishes, feelings, beliefs, values, and other factors should be collected from family and friends from the outset. This would be facilitated by having somewhere specific to document this information. It has many advantages.
It introduces the patient and family to the concepts of capacity and best interests. Still, it does so as a part of routine clinical practice, just as collecting telephone numbers and information about dietary preferences is. It allows family and friends time to reflect on what is essential to the patient without doing so in a stressful situation. A well-structured system of medical notes could 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 likely reveal a person’s capacity and may well also show what support is needed to achieve the ability 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 the capacity and the evidence. It would also become clear who needed to have the decision made using a best interests approach. The conversation would also help by 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 the information outlined in the Mental Capacity Act.
This way, the approach outlined in the Act becomes incorporated into routine clinical practice.
In this approach, 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 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, and the prognosis) as recommended by the General Medical Council.
Patients with capacity are often (but only sometimes) 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 Care Planning (here); one example is the ReSPECT form.
Patients who lack capacity should also be enabled to benefit from this to avoid urgently making decisions 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 concern 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
Another 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, check whether or not they wish to continue the treatment they are taking or being given. For example, people may decide that a course of chemotherapy is too unpleasant to continue, however beneficial it might be.
Therefore, reasonably regularly, it is essential 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 about his wishes, feelings, values, beliefs and other factors comes to light. Otherwise, there should be a routine review of all ongoing management regularly, between every three months (in the early stages) and 12 months (later).
Conclusion and summary
In this post, I have proposed that the Mental Capacity Act 2005 should be seen not as a law that either constrains or enforces clinical actions but as good clinical advice on how to approach the management of people who cannot make fully informed decisions. Capacity is not a fixed state or a binary phenomenon but is relative to the situation and varies along a continuum. The best person to assess capacity is the clinician who needs the decision, which 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 other external and separate process that sometimes has to be used. Last, 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 healthcare, but the principles apply to social care also. It has tried to demystify the Act, emphasising that it should not only be used in exceptional cases, requiring specific special people and processes. Instead, it is common sense clinical advice that applies at all times and in all circumstances; it is framed as Law because its effect legitimises 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 of both of the relevant information and the process, sufficient to justify the decision. Further background on the concept of best interests can be found here.