Relevant information and the Mental Capacity Act

Introduction

An often ambiguous area in everyday medical practice is the central role played by the information available to an individual in their decision-making process and how this information underpins the validity of the assessment of their decisional capacity.

The first principle of the Mental Capacity Act (MCA) is that a person must be assumed to have decisional capacity unless it is established that they do not. ¹ Recent court judgments in Montgomery v Lanarkshire Health Board, ² Hassell v Hillingdon Hospital ³ as well as Thefaut v Johnston ⁴ have, however, underscored the fact that key factors in determining the treatment consenting capacity of an individual are the extent/appropriateness of the information discussed with them as well as their response during the discussion(s) and the influence that the functioning of their mind/brain has on their decision-making process (Figure 1).

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Figure 1.

Flow Chart – Relevant Information and Capacity Assessment.

The relevant information necessary for an individual to make a decision will depend on the type and seriousness of the decision required but assessors often lack guidance on what exact information to discuss with the individual in the often limited time available to them.

The question thus arises, what exactly does an individual need to know to be able to make an informed decision and who determines that information, its depth, volume, and quality?

The principle of autonomy or self-determination means that a capacitous individual can make decisions about their personal welfare regardless of the wisdom or consequences of the decision and those decisions must be respected and followed by others. A person of full capacity can for example, refuse medical treatment even if the consequence of this is that they will die. This decision can be for the present time, or for the future (Advance Decision to Refuse Treatment – ADRT) ⁵ and the decision must be respected by those around him/her and the decision does not have to be explained to anyone. ⁶

The determination of an individual’s decisional capacity is decision and time specific ⁷ and there will be instances when an individual might have forgotten a decision made previously. In such instances, gentle reality orientation of a capacitous individual at the material time should ascertain if they are willing to abide by their previous decision(s).

For someone who lacks capacity, however, the situation is different. Decisions will be made in their best interests. This mean decisions about even very personal matters such as where someone lives, or what medical treatment they should receive, can be imposed on a person “against their will” especially, on treatment-related issues, if there is no valid/applicable ADRT in place.

The consequences then of being assessed as lacking the capacity to make a particular decision can be significant.

Given that a person’s decisional capacity will be assessed against the relevant information available to them and how their processing of this information is influenced by the functioning of their mind or brain, getting the relevant information right is essential.

If the assessor wrongly concludes that the individual must be able to understand, retain, use/weigh a piece of information that is not, in fact “relevant information”, the individual could be wrongly assessed as lacking capacity in respect of a particular matter and so robbed of his/her autonomy.

The statutory test for capacity

It is important to remember that capacity is issue specific; thus, a person might have the capacity to make a decision about where they live but lack the capacity to make the decision about a particular medical treatment. In determining whether someone lacks capacity to make a particular decision, the question to be asked is whether a person is unable to make the decision for him/herself because of an impairment of, or a disturbance in the functioning of, the mind or brain. This requires the assessor to consider:

First, whether the person is unable to make the decision for him or herself. In answering that question, the assessor must consider the test in section 3 of the MCA which provides that a person will be unable to do so if the person is unable to understand, or retain, or use or weigh the information relevant to the decision, or communicate his decision (whether by talking, using sign language or any other means). (emphasis added)

The importance of the “relevant information” in the capacity assessment process

Declaring that an individual has consented to/has decisional capacity to consent to an act denotes that on balance of probabilities, they have understood, retained, and weighed in the balance information relevant to the required decision, and thereafter conveyed their decision.

Thus, the initial step whilst seeking a specific decision from an individual should be to fix attention upon the actual decision at hand, ⁸ define the question(s) that requires to be answered and identify what information the individual needs to understand and process to make the required decision. ⁹ Thus, identifying what the relevant information is, is a crucial step in the assessment process.

The MCA itself and the Code of Practice provides some guidance in identifying the relevant information. Section 3(4) of the MCA provides that the information relevant to a decision includes information about the reasonably foreseeable consequences of deciding one way or another or failing to make the decision at all. Paragraph 4.16 of the code adds to the statutory definition that relevant information includes the nature of the decision and the reason why the decision is needed. ¹⁰

Thus, the relevant information includes:

The nature of the decision (what is the decision to be made – is it a decision about medical treatment or contact with family members).

The MCA and the Courts have also provided some guidance on the duty on assessors to provide relevant information to those that they are assessing and the extent to which this must be understood, retained and weighed in the balance:

Affording the individual under evaluation, the appropriate relevant information might on occasions require gathering background information from those that know them. ¹¹

Some practical examples

The information required by an individual needing to decide between staying at home or going into a care home is not between the care home and a return home with no or limited support, but rather between staying in the care home and a return home with all practicable support.¹³ The individual needs to have had an explanation, in an appropriate form, of the support that would be provided to him/her in both settings, before the assessment as to the individual’s capacity is undertaken.

On medical treatment-related decisions, the relevant information from the healthcare professional should detail the treatment options available to the patient, setting out the potential benefits, risks, burdens, and side effects of each option including the option to have no treatment. ¹⁸

Take for example a terminally ill patient who is being assessed as to whether he/she has the capacity to decide whether he/she should go into a hospital/hospice for the purpose of receiving palliative care to ameliorate some of their symptoms whilst awaiting “dignified death” as opposed to them going into hospital for the purpose of receiving “active treatment” for their terminal illness. The relevant information to be provided to the patient may include information about diagnosis and prognosis of the underlying condition, details of the different types of active treatment and the risks and benefits of each and the impact on the prognosis of the underlying illness, the length of time such treatments might take, the details of the palliative care plan and the risks and benefits of this together with the prognosis, and whether the palliative care plan can be delivered in the patient’s home or whether a move to a different setting would be required.

With respect to a patient deciding whether to seek specialist consultation/diagnosis and treatment, the role of the General Practitioner lies with providing the patient with the information relevant for them to decide on whether to attend a clinic appointment for assessment/diagnosis whilst the ambit of the Hospital Specialist lies with providing the patient with the relevant information on their diagnosis and treatment options to enable them to decide on whether they want to receive treatment or not.

Conclusions

Significantly, the only legal basis for interfering in the affairs of a person is either with the persons consent or through a process prescribed by law.

Correctly identifying the relevant information in respect of the decision at hand is a critical step when assessing an individual’s mental capacity to make the required decision.

The judgment made by the assessor on an individual’s decisional capacity might make the difference between the rights of an otherwise capacitous individual being taken away from them and the making of potentially fatal/catastrophic decisions by an otherwise non-capacitous individual. ¹⁹

Affording the individual being assessed with all practicable support, including tailored and well-documented information relevant to the decision at hand, is in line with expectations of the MCA ²⁰ and this approach is well recognised in Jurisprudence. ²¹

There is a learning process to understanding the principles and provisions of the MCA but a conscious awareness of the underpinning role of “relevant information” to unlocking the provisions of the MCA is crucial to our proper use of the powers available under this important piece of legislation.