Capacity and consent

Contents

Mental Capacity Act 2005 — Five Principles

The Mental Capacity Act (MCA) 2005 applies to England and Wales. The five statutory principles (Section 1 MCA 2005):

  1. A person must be assumed to have capacity unless it is established that they lack it
  2. A person is not to be treated as unable to make a decision unless all practicable steps to help them have been taken without success
  3. A person is not to be treated as unable to make a decision merely because they make an unwise decision
  4. An act done or decision made for, or on behalf of, a person who lacks capacity must be done or made in their best interests
  5. Before making a decision, regard must be had to the least restrictive option regarding the person's rights and freedom of action

Key Characteristics of Capacity

  • Decision-specific: capacity is assessed for a specific decision at a specific time, not globally
  • Time-specific: capacity may fluctuate (e.g. delirium); reassess when it may have returned
  • Not diagnosis-specific: a diagnosis of dementia, schizophrenia, or ABI does not automatically confer lack of capacity — the functional test must be applied
  • Not outcome-specific: a patient retains capacity to make decisions others consider unwise — including refusal of life-sustaining treatment

Assessing Capacity — Two-Stage Test

Stage 1: Is there an impairment or disturbance of mind or brain?

Examples: acute delirium, intoxication, severe psychiatric illness, dementia, brain injury, unconsciousness. Must be present to proceed to stage 2.

Stage 2: Does the impairment cause inability to perform any of the four functional abilities?

A person lacks capacity for a specific decision if they cannot (as a result of the impairment):

Functional ability What to assess
Understand the information relevant to the decision Does the person understand what the treatment is, what happens if they have/don't have it, and the alternatives?
Retain the information long enough to make the decision Even short-term retention (minutes) is sufficient; retention over time is not required
Use or weigh the information as part of a decision-making process Can they weigh the pros and cons? Can they apply it to their own situation?
Communicate the decision (by any means) Speech, writing, gesture, eye blinks — any means counts

All four functional abilities must be intact for the person to have capacity. Failure in any one results in a finding of lack of capacity for that decision.

Practical Assessment

  • Use plain language; check understanding; give information in stages
  • Optimise conditions: adequate analgesia, treat delirium, wait until most lucid period, involve interpreters (not family members) for language barriers
  • A person may demonstrate capacity for some decisions but not others (e.g. can decide about nutrition but not complex surgical intervention)
  • Document: nature of the decision, reasons for finding, assessment performed, who was present, any supporting measures tried

Capacity in the ICU — Specific Scenarios

Scenario Approach
Sedated/intubated patient Lacks capacity by definition (cannot communicate); proceed to best interests framework; does not require formal capacity assessment
Delirium Fluctuating capacity; assess during lucid intervals; for urgent decisions, proceed on best interests if unable to defer; document reassessment
Acute intoxication Temporary incapacity; decisions can be deferred if safe to do so (time-limited); for life-threatening emergencies: treat under s.5 MCA (reasonable belief no capacity, reasonable to act in best interests)
Refusal of life-sustaining treatment High threshold for overriding: must be confident they lack capacity; if they have capacity, the refusal is binding even if fatal; seek senior/legal input
Patients with learning disabilities Capacity is not excluded by diagnosis; support needs must be met first; if no capacity, best interests process with appropriate consultation

Advance Decisions to Refuse Treatment (ADRT)

An ADRT is a decision made in advance, when a person had capacity, to refuse specific medical treatment in specified future circumstances.

Validity Requirements

All ADRTs:

  • Must be made by a person ≥18 years who had capacity at the time
  • Must specify the treatment to be refused and the circumstances in which the refusal applies
  • Can be written or verbal (unless refusing life-sustaining treatment)

For refusal of life-sustaining treatment additionally:

  • Must be in writing
  • Must be signed (or directed to be signed) by the person
  • Must be witnessed and the witness must sign
  • Must include an explicit statement: "even if my life is at risk" (or equivalent — s.25(5) MCA 2005)

Effect of a Valid and Applicable ADRT

A valid and applicable ADRT is legally binding — clinicians must not provide the refused treatment even if they believe it is in the patient's best interests.

Applicable: the specific treatment being proposed is the treatment refused, and the circumstances specified in the ADRT apply to the current situation.

Invalidity and Inapplicability

An ADRT is invalid if:

  • The person has withdrawn it while capacitous
  • They have subsequently made an LPA (health and welfare) after the ADRT, and the LPA attorney has authority over the decision in question
  • They acted inconsistently with the ADRT while capacitous (e.g. requested the refused treatment)

An ADRT is inapplicable if circumstances have materially changed since it was made, or the current situation is not covered by the ADRT.

If in doubt: treat in the person's best interests; seek urgent legal advice via the Trust's legal team and Court of Protection if needed.

Lasting Power of Attorney (LPA)

A Lasting Power of Attorney is a legal document made when a person has capacity, appointing one or more named attorneys to make specified decisions on their behalf when they later lack capacity.

Types

Type Covers Notes
Property and affairs LPA Financial decisions Not relevant to medical decision-making
Health and welfare LPA Medical treatment, care decisions Relevant to ICU — confirm this type is registered

Key Points for Health and Welfare LPA

  • The LPA must be registered with the Office of the Public Guardian before use
  • A health and welfare attorney can only make decisions when the person lacks capacity — not instead of a capacitous person
  • An attorney may refuse life-sustaining treatment only if this is explicitly granted in the LPA (it must state this clearly)
  • The attorney acts as a substitute decision-maker — they must make decisions in the person's best interests, not based purely on their own views
  • They should consider the person's previously expressed wishes, values, and beliefs
  • If there is no health and welfare LPA but there is a property and affairs LPA: that attorney has no authority over medical decisions

Verifying an LPA

  • Ask to see the original registered document (or certified copy)
  • Check it is registered (Office of the Public Guardian validation stamp)
  • Confirm it covers health and welfare decisions
  • Confirm it explicitly grants authority over life-sustaining treatment if relevant

Best Interests Decision-Making

When a person lacks capacity, decisions must be made in their best interests (s.4 MCA 2005).

Section 4 Checklist

  1. Do not make assumptions based on age, appearance, behaviour, or condition
  2. Consider whether capacity may return and whether the decision can wait
  3. Involve the person as much as possible (supported decision-making)
  4. Consider their previously expressed wishes, feelings, values, and beliefs (including any informal advance statements not qualifying as formal ADRTs)
  5. Consult people close to them: family, carers, partner — but they are consultees, not decision-makers
  6. Consider what they would likely decide if they had capacity ("the substituted judgement standard")
  7. Least restrictive option: when choosing between options, prefer the one that least restricts the person's rights and freedom

Who Makes the Decision?

The decision-maker is:

  • The senior clinician responsible for the treatment decision (e.g. ICU consultant)
  • If an LPA attorney exists with relevant authority: the attorney
  • If no LPA and no family/person to consult: the clinician must appoint an IMCA (Independent Mental Capacity Advocate) before making significant decisions about serious medical treatment

IMCA (Independent Mental Capacity Advocate)

Mandatory appointment when:

  • The person lacks capacity AND
  • There is no family, friend, or appropriate person (other than paid carers) to consult AND
  • A decision about serious medical treatment or accommodation change is being made

Court of Protection

The Court of Protection (COP) has jurisdiction over mental capacity issues for adults in England and Wales.

When to involve the COP

  • Genuine dispute between family members and clinicians about best interests
  • A patient with apparent capacity is making a decision that clinicians feel they cannot have capacity to make (e.g. life-ending refusal where capacity is doubtful)
  • Disagreement among treating team about best interests
  • Contemplated action carries high risk and best interests is not clear
  • Sterilisation, organ donation, or other particularly significant decisions

Practicalities in ICU

  • Urgent applications can be heard within hours (emergency COP applications)
  • Document all steps taken before applying
  • Trust legal teams and medico-legal advisors must be involved

Deprivation of Liberty Safeguards (DoLS)

DoLS (Schedule A1 MCA 2005) authorise the restriction of liberty of adults who lack capacity in care homes and hospitals when:

  • Continuous supervision and control is exercised
  • They are not free to leave
  • The deprivation is in their best interests

In ICU:

  • Sedated, intubated, or heavily restrained patients are deprived of their liberty
  • A DoLS standard authorisation should be sought for any patient who would object to or try to leave the ICU if able
  • Urgent authorisations last 7 days; standard authorisations up to 12 months
  • Liberty Protection Safeguards (LPS) will replace DoLS under the Mental Capacity (Amendment) Act 2019, when implemented (publication pending)

Viva Questions

1. How do you assess capacity in a delirious ICU patient who is refusing a blood transfusion?

Capacity is assessed using the two-stage MCA 2005 test. Stage 1: delirium is an impairment of the mind — confirmed. Stage 2: assess the four functional abilities for this specific decision (blood transfusion). Does the patient understand what a blood transfusion is, why it is being recommended, what happens if they don't have it, and the alternatives? Can they retain this information long enough to decide? Can they use or weigh it in their decision-making? Can they communicate their decision? In delirium, all four abilities are often impaired — particularly the ability to use and weigh information and to retain it. However, delirium fluctuates — if possible, reassess during a clearer period. If the decision can safely wait, wait and reassess. If urgent: if capacity is absent, treat in the patient's best interests (transfusion to prevent death). Document the assessment carefully. If there is an ADRT refusing blood products (e.g. Jehovah's Witness document) that is valid and applicable, that is legally binding regardless of my clinical view. Distinguish between the transfusion refusal being a manifestation of delirium (lack of capacity) versus a deeply held prior value (which requires a valid ADRT or previous capacitous discussion). Involve the senior team, haematology, and if needed the Trust's legal advisors.

2. You are presented with a health and welfare LPA by a patient's family member. What do you need to verify?

I need to confirm several things before the attorney can make healthcare decisions. First: is this a health and welfare LPA (not property and affairs — which has no authority over medical decisions)? Second: is it registered with the Office of the Public Guardian (look for the official registration stamp on each page — unregistered LPAs cannot be used)? Third: does the LPA cover the specific decision in question? If we are discussing life-sustaining treatment (withholding or withdrawing ventilation, for example), the LPA must explicitly state that the attorney is granted authority to refuse or consent to life-sustaining treatment — if not, the clinician retains decision-making authority. Fourth: is the patient currently lacking capacity? LPAs can only be activated when capacity is absent — an attorney cannot override a capacitous patient's decision. Fifth: the attorney must be making decisions in the patient's best interests, not their own — if there is a conflict of interest or the attorney appears to be acting for other reasons, escalate to the COP. Ask to see the original or certified copy of the document.

3. A patient with capacity is refusing the surgery you believe is lifesaving. What do you do?

A capacitous adult has an absolute right to refuse medical treatment, even if that refusal will result in death — this is a fundamental principle of autonomy and personal liberty, established in English common law and codified in the MCA 2005. My first step is to confirm capacity rigorously: apply the two-stage test, document it, and involve a senior colleague and ideally a second opinion on the capacity assessment given the stakes. Provide information clearly and check understanding — ensure they truly understand the consequences of refusal. Explore their reasons: is there a value or belief underpinning the decision (e.g. religious objection, quality of life concern, prior experience of surgery)? These are legitimate and should inform my response. Consider whether there is any reversible factor impairing decision-making that, if treated, might change the patient's position. If after all of this I am satisfied they have capacity: the refusal is binding. I must not treat them against their will — to do so would constitute assault. Document the conversation thoroughly. Arrange palliative and supportive care. Involve senior colleagues and the Trust's legal/ethical advisory team if the situation remains uncertain.

4. Explain the difference between an ADRT and a statement of wishes and values.

An Advance Decision to Refuse Treatment (ADRT) is a specific, formal legal instrument under the MCA 2005 by which a capacitous person refuses a specified treatment in specified future circumstances. If valid and applicable, it is legally binding — clinicians must not provide the refused treatment regardless of their own view of the patient's best interests. For refusal of life-sustaining treatment, the ADRT must be written, signed, witnessed, and include the statement that the refusal applies "even if my life is at risk." By contrast, an advance statement of wishes and values is an informal document (or verbal expression) of preferences, values, and beliefs — perhaps about the type of care desired, quality of life concerns, or treatment goals. These are NOT legally binding but must be given significant weight in best interests decision-making under s.4 MCA 2005. In practice, many patients have only informal statements; these guide but do not determine best interests. Clinicians sometimes receive documents labelled "advance directive" or "living will" that may not meet the formal ADRT criteria — careful scrutiny is required to determine their legal status before acting on them as binding.