The Mental Capacity Act (MCA) 2005

1. Clinical Overview

Summary

The Mental Capacity Act 2005 (MCA) is the primary legislation in England and Wales governing decision-making for adults (aged 16+) who lack mental capacity. [1] It provides a comprehensive statutory framework that balances individual autonomy with protection for vulnerable persons, applying to all decisions ranging from daily care choices to major medical interventions and end-of-life treatment. [2]

The Act embodies a fundamental shift from paternalistic medical decision-making to a rights-based approach, enshrining the presumption of capacity and the right to make unwise decisions. [3] It applies universally across healthcare, social care, and financial settings, making it essential knowledge for all medical professionals regardless of specialty. [1,2]

Key Principle: Capacity is both decision-specific (a person may have capacity for one decision but not another) and time-specific (capacity can fluctuate, particularly in delirium, intoxication, or progressive cognitive decline). [4]

Legislative Context

• Jurisdiction: England and Wales only
• Age: Applies to persons aged 16 years and over
• Implementation: October 2007
• Code of Practice: Statutory guidance issued under Section 42
• Scotland: Governed by Adults with Incapacity (Scotland) Act 2000
• Northern Ireland: Separate legislation (Mental Capacity Act (NI) 2016)

The Five Statutory Principles (Section 1)

These principles form the bedrock of the Act and must be applied in every capacity assessment and decision: [1,5]

Principle 1: Presumption of Capacity Every adult has the right to make their own decisions unless proven otherwise. The burden of proof lies with those asserting incapacity. [5]

Principle 2: Supportive Decision-Making All practicable steps must be taken to help a person make their own decision before concluding they cannot. This includes:

• Providing information in accessible formats
• Using interpreters or communication aids
• Choosing optimal timing (avoid delirium, intoxication)
• Allowing adequate time for decision-making
• Involving family/advocates to facilitate understanding [6]

Principle 3: Right to Make Unwise Decisions A person cannot be treated as unable to make a decision merely because they make an unwise one. Eccentricity, unconventional choices, or decisions that appear irrational do not equate to incapacity. [3,7] This protects individual autonomy and prevents professional values overriding patient choice.

Principle 4: Best Interests Any act done for, or decision made on behalf of, a person who lacks capacity must be in their best interests (Section 4). [8]

Principle 5: Least Restrictive Option Before acting, consideration must be given to whether the purpose can be achieved in a way that is less restrictive of the person's rights and freedom of action. [1]

Image: 5 Principles of MCA

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Clinical Pearls

Clinical Pearl: The "Eccentric Millionaire" Principle: A patient with full capacity refusing life-saving antibiotics to return home and feed their cat is exercising autonomy, not demonstrating incapacity. If they understand they will die without treatment and have weighed this risk against their values, the decision—however unwise—must be respected. [3,7]

Clinical Pearl: Fluctuating Capacity: In conditions like delirium, UTI-associated confusion, or intoxication, capacity may wax and wane. If a decision can safely be delayed until capacity is restored, it MUST be delayed. Emergency decisions should be made in best interests, with reassessment when capacity returns. [4,9]

Clinical Pearl: The "Next of Kin" Myth: In UK law, "Next of Kin" confers NO legal authority to consent for an incapacitated adult. Only a Lasting Power of Attorney (Health and Welfare) or Court-appointed Deputy has this power. Otherwise, the clinician makes decisions in the patient's best interests, consulting (but not requiring permission from) relatives. [10]

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2. Epidemiology and Scope

Population Affected

The MCA applies to all adults aged 16+ in England and Wales. Conditions commonly associated with impaired capacity include: [11,12]

Healthcare Setting Statistics

• Deprivation of Liberty Safeguards (DoLS): Over 260,000 applications annually in England (2019-20), driven by the Cheshire West Supreme Court ruling expanding the definition of deprivation. [13]
• Advance Decisions: Estimated less than 5% of UK adults have a valid Advance Decision to Refuse Treatment. [14]
• Lasting Powers of Attorney: Over 5 million LPAs registered (2023), with 60% for Property and Financial Affairs, 40% for Health and Welfare. [15]

Image: Capacity Assessment Flowchart

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3. The Legal Framework: The Two-Stage Test

Establishing lack of capacity requires satisfying TWO distinct stages: [1,5]

Stage 1: The Diagnostic Threshold (Section 2(1))

Question: Is there an impairment of, or disturbance in the functioning of, the mind or brain?

This is a medical/clinical question requiring evidence of:

• Permanent impairment (e.g., dementia, learning disability, brain injury)
• Temporary disturbance (e.g., delirium, acute psychosis, intoxication, sedation)

Critical Point: If NO impairment exists, the person HAS capacity, regardless of how unwise their decision appears. [3,5]

Examples of Impairment:

• Neurodegenerative disease (Alzheimer's, frontotemporal dementia, Parkinson's disease)
• Acute confusional states (delirium, septic encephalopathy)
• Cerebrovascular disease (stroke, vascular dementia)
• Traumatic brain injury
• Severe mental illness (psychotic depression, schizophrenia with active delusions)
• Substance intoxication/withdrawal
• Hypoxic brain injury
• Brain tumors or metastases
• Metabolic encephalopathy (uremia, hepatic encephalopathy)

Non-Examples (capacity presumed):

• Unconventional beliefs or lifestyle
• Making a decision others disagree with
• Having a mental illness alone (illness ≠ incapacity) [7]

Stage 2: The Functional Test (Section 3)

Question: Does the impairment/disturbance mean the person is unable to make the specific decision at the time it needs to be made?

A person is unable to make a decision if they cannot do ANY ONE of the following four:

1. Understand the Information Relevant to the Decision

The person must be able to comprehend:

• The nature of the decision
• The reason the decision is needed
• The likely effects of deciding one way or another
• The consequences of failing to make a decision [5]

Testing Understanding: Ask the person to explain back in their own words. Do NOT simply accept "yes" to closed questions like "Do you understand?" [6]

Example: A patient consenting to amputation must understand: what amputation means, why it is recommended (gangrene/sepsis), what happens if they refuse (death), what happens if they agree (loss of limb, rehabilitation needs).

2. Retain the Information Long Enough to Make the Decision

The person does not need to retain information permanently, only for the period required to weigh the decision. [5] This is particularly relevant in:

• Short-term memory impairment (dementia, Korsakoff syndrome)
• Severe delirium with attention deficit

Example: A patient who forgets the explanation within 30 seconds cannot weigh the information, even if they momentarily understood it.

3. Use or Weigh the Information as Part of the Decision-Making Process

This is often the most challenging criterion. The person must be able to:

• Balance the information (risks vs benefits)
• Apply it to their own situation
• Integrate it with their values and preferences [16]

Impairments Affecting Weighing:

• Delusional beliefs overriding reality (e.g., believing antibiotics are poison)
• Inability to believe information applies to them (anosognosia in stroke)
• Executive dysfunction preventing risk-benefit analysis (frontal lobe damage)

Example: A patient with paranoid delusions believes doctors are trying to harm them and cannot weigh the genuine medical need for surgery, despite understanding the facts when presented.

4. Communicate the Decision (By Any Means)

Communication can be verbal, written, sign language, blinking, squeezing hands, or any other means. [5] Failure to communicate due to physical disability (locked-in syndrome, aphasia) does NOT equal incapacity if communication aids can be used.

Example: A patient with expressive aphasia post-stroke can communicate "yes/no" by squeezing hands and may retain capacity with appropriate support.

Causative Link

Crucially, the inability must be because of the impairment, not despite it. [5] A person with dementia who refuses treatment for religious reasons may still have capacity for that decision if the refusal stems from longstanding beliefs, not cognitive impairment.

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4. Assessment in Practice

Who Assesses Capacity?

General Rule: The person proposing the treatment or intervention assesses capacity. [1,6] This is typically:

• The ward doctor for medical/surgical treatment
• The GP for care home placement
• The surgeon for operative consent

Specialist Assessment: Complex cases may require:

• Psychiatry liaison (fluctuating mental states, capacity for complex decisions)
• Neuropsychology (cognitive testing for borderline cases)
• Court of Protection (irresolvable disputes, serious decisions like withdrawal of life-sustaining treatment)

Timing of Assessment

Capacity must be assessed at the time the decision needs to be made, not in advance or retrospectively. [4] Reassessment is required if:

• The person's condition changes
• The decision changes
• Significant time has passed

Documentation Requirements

Poor documentation is the most common medico-legal failing in capacity assessments. [6] Essential elements:

Inadequate: "Patient lacks capacity."

Adequate:

CAPACITY ASSESSMENT - AMPUTATION OF RIGHT LEG

STAGE 1 - DIAGNOSTIC THRESHOLD: YES
Patient has advanced Alzheimer's dementia (MMSE 12/30, confirmed by CT brain 
showing cortical atrophy and neuropsychology report 15/6/25).

STAGE 2 - FUNCTIONAL TEST: UNABLE

1. UNDERSTAND: IMPAIRED
Patient unable to explain what amputation means. When asked to repeat back, 
states "you want to help my leg get better with tablets."

2. RETAIN: IMPAIRED
Forgets conversation within 2-3 minutes. When reassessed 5 minutes later, 
no recollection of discussion about surgery.

3. WEIGH: IMPAIRED
Unable to compare risks (death from gangrene) vs benefits (life-saving). 
Repeatedly states "my leg is fine" despite visible necrotic tissue. Cannot 
integrate information about consequences.

4. COMMUNICATE: INTACT (verbal communication clear)

CONCLUSION: Patient LACKS CAPACITY for decision regarding amputation.
This is BECAUSE of Alzheimer's dementia affecting cognition (understand/retain/weigh).

BEST INTERESTS ASSESSMENT TO FOLLOW.

Dr. [Name], [GMC], [Date/Time]

Specific Clinical Scenarios

Scenario 1: Refusal of Life-Saving Treatment

Highest Threshold: When a patient refuses treatment that will save their life, the bar for capacity is high, but so is the bar for overriding their autonomy. [7]

Assessment Focus:

• Do they understand death is the likely outcome?
• Can they weigh this risk against their reasons for refusal?
• Is the refusal consistent with their longstanding values?

Example: Jehovah's Witness refusing blood transfusion—likely HAS capacity if they understand the risk of death and the refusal stems from religious conviction, not cognitive impairment. [7]

Scenario 2: Self-Discharge Against Medical Advice

Common in emergency departments and acute medical wards. [17]

Approach:

1. Assess capacity specifically for the decision to leave hospital
2. Information required: diagnosis, treatment needed, risks of leaving, consequences
3. If capacity present: document risks explained, patient accepts responsibility
4. If capacity absent: prevent discharge using MCA (best interests), consider DoLS if restraint/detention needed

Scenario 3: Fluctuating Capacity in Delirium

Key Principle: If the decision can wait, it MUST wait until capacity is restored. [4,9]

Management:

• Treat underlying delirium (sepsis, electrolytes, medication review)
• Serial capacity assessments
• For urgent decisions: act in best interests (Section 5)
• Document fluctuation and reassess when delirium resolves

Scenario 4: Learning Disability

Assumption: People with learning disabilities are presumed to have capacity unless proven otherwise. [18] Many can make decisions with appropriate support (easy-read materials, visual aids, advocates).

Decision-Specific: May have capacity for daily decisions but not complex financial or medical choices.

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5. Best Interests (Section 4)

Once incapacity is established, decisions must be made in the person's best interests. [8] This is NOT what professionals think is best medically, but a holistic assessment considering the person's values, wishes, and welfare.

The Best Interests Checklist

The decision-maker MUST consider the following: [1,8]

1. Can the Decision Be Delayed?

• Will the person regain capacity (e.g., delirium resolving, intoxication wearing off)?
• If yes, the decision MUST wait unless it is urgent
• Emergency treatment can proceed under Section 5 (see below)

2. Participation and Involvement

• Involve the person as much as possible in the decision
• Consider how to enable participation (communication aids, timing, advocates)

3. Past and Present Wishes and Feelings

Critical Sources:

• Advance Decisions to Refuse Treatment (ADRT) - legally binding if valid [19]
• Advance Statements (preferences, not legally binding but must be considered)
• Verbal expressions when capacitous
• Written documents, letters, diaries
• Cultural, religious, and moral beliefs

Example: A patient who previously stated "I never want to be in a nursing home" may have that wish overridden if remaining at home poses serious safety risk, but the wish carries significant weight.

4. Other Relevant Factors

• The person's age, life expectancy, health status
• Likelihood of regaining capacity
• Need to encourage participation in decisions affecting them

5. Consultation with Others

Mandatory Consultation (where practical and appropriate):

• Anyone named by the person as someone to consult
• Anyone caring for the person or interested in their welfare
• Lasting Power of Attorney (if appointed)
• Deputy (if appointed by Court of Protection)
• Independent Mental Capacity Advocate (IMCA) - if required [20]

Note: Consultation is for information gathering (what would the person have wanted?), NOT to seek permission. The decision-maker retains responsibility. [10]

6. No Discrimination

Must NOT make assumptions based on:

• Age ("too old for treatment")
• Appearance
• Condition or behavior
• Unjustified assumptions about quality of life [8]

Best Interests: Not Just Medical Best Interests

Best interests encompasses all relevant factors, not just clinical benefit: [8]

Image: Best Interests Balance Sheet

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Best Interests in Life-Sustaining Treatment

Special Provision (Section 4(5)): Where the decision concerns life-sustaining treatment, the decision-maker must NOT be motivated by a desire to bring about the person's death. [1,8]

However: Treatment may be withdrawn if it is NOT in the person's best interests, even if this shortens life. [8]

Example: Withdrawing ventilation in a patient with severe brain injury and no prospect of recovery can be in best interests if continued treatment is futile and burdensome, provided the motivation is to avoid harm (not to cause death).

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6. Independent Mental Capacity Advocate (IMCA)

Role and Purpose

An IMCA is a statutory advocate appointed to represent and support a person who lacks capacity when certain serious decisions are being made, and the person has nobody else to consult. [20]

"Unbefriended" Definition: No one appropriate to consult (no family, friends, or anyone taking an interest in their welfare) OTHER than paid care staff.

When IMCA Instructed (Mandatory)

1. Serious Medical Treatment [20]

• Treatment involving serious consequences (e.g., major surgery, chemotherapy, amputation)
• Consequences include:
  • Serious consequences for physical/mental health
  • Serious consequences for the patient's future options
  • Life-sustaining treatment withdrawal

2. Change of Accommodation [20]

• Long-term move to care home (> 8 weeks)
• Long-term hospital admission (> 28 days)
• Move to different care home/hospital

Exceptions (IMCA NOT Required)

• Emergency treatment (cannot wait for IMCA)
• Detained under Mental Health Act (different advocacy rights)
• Person has family/friends to consult (even if they disagree)

IMCA Rights and Duties

The IMCA will:

• Interview the person lacking capacity
• Review medical/social care records
• Consult with professionals involved
• Provide a written report on what is in the person's best interests
• Challenge decisions if necessary (including escalation to Court of Protection) [20]

Critical: The IMCA's report must be considered, but the decision-maker is not bound to follow it.

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7. Advance Decisions to Refuse Treatment (ADRT)

Legal Status

An Advance Decision (formerly "Living Will") is a decision made by a person aged 18+ with capacity to refuse specific treatment in the future when they lack capacity. [19]

Key Principle: A valid and applicable ADRT has the same legal force as a contemporaneous refusal by a person with capacity. It MUST be followed. [1,19]

Validity Criteria

For an ADRT to be valid, it must: [19]

1. Made by adult (18+) with capacity at the time it was made
2. Not withdrawn while the person had capacity
3. Not altered by a Lasting Power of Attorney created later (LPA for Health and Welfare overrides older ADRT)
4. Not acted inconsistently (e.g., patient later accepted the treatment they previously refused)

Applicability Criteria

For an ADRT to be applicable, it must: [19]

1. Specific to the treatment in question (general statements like "no heroic measures" are too vague)
2. Specific to the circumstances that have arisen
3. Not circumstances unforeseen by the person when making the ADRT

Life-Sustaining Treatment Refusal

To refuse life-sustaining treatment, the ADRT MUST: [1,19]

• Be in writing
• Be signed by the person (or signed on their behalf in their presence)
• Be witnessed
• Include explicit statement: "even if life is at risk"

Example of Valid ADRT for Life-Sustaining Treatment:

"I, [Name], refuse mechanical ventilation if I develop motor neurone disease 
and lose the ability to breathe independently, even if this decision results 
in my death.

Signed: [Signature]
Date: [Date]
Witnessed by: [Witness signature and details]"

ADRT vs Treatment Provision

Critical Distinction: An ADRT can only REFUSE treatment. It cannot demand treatment that clinicians deem inappropriate. [19]

Example: A person cannot use an ADRT to demand cardiopulmonary resuscitation if clinicians judge it futile.

Uncertainty and ADRT

If there is doubt about validity or applicability, treat to save life/prevent deterioration while seeking urgent legal advice (Court of Protection if necessary). [19] A doctor acting in good faith reliance on an ADRT is protected from liability.

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8. Lasting Power of Attorney (LPA)

Overview

An LPA is a legal document allowing a person (the Donor) aged 18+ with capacity to appoint one or more people (the Attorney(s)) to make decisions on their behalf if they lose capacity. [15]

Two Types of LPA

1. Property and Financial Affairs LPA

• Manages finances, property, bills, investments
• Can be used while Donor still has capacity (if specified)
• Cannot make healthcare decisions

2. Health and Welfare LPA

• Makes decisions about medical treatment, care, where to live
• Can only be used when Donor lacks capacity
• Can include authority to refuse life-sustaining treatment (if expressly stated in LPA) [15]

Attorney's Duties

The Attorney must: [15]

• Act in the Donor's best interests (Section 4 checklist applies)
• Respect the Donor's past and present wishes
• Not make decisions the Donor can make themselves
• Consult with the Donor as much as possible
• Follow the MCA principles

Checking LPA Validity

Office of the Public Guardian (OPG) maintains a register of all LPAs. [15]

• Verify LPA is registered (unregistered LPAs are invalid)
• Check scope of authority (does it cover the specific decision?)
• Confirm no Court of Protection order revoking it

Red Flag: If family produce an LPA but it is not registered, it is NOT valid. Always check with OPG.

LPA vs Best Interests

If a valid Health and Welfare LPA is in place, the Attorney makes the decision, not the clinical team. [15] However:

• The Attorney must still act in best interests
• Clinicians can challenge Attorney decisions via Court of Protection if they believe the Attorney is not acting in best interests

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9. Deprivation of Liberty Safeguards (DoLS)

Legal Background

Article 5 of the European Convention on Human Rights guarantees the right to liberty. Depriving someone of liberty without lawful authority is unlawful detention. [13]

DoLS provides the legal framework to lawfully deprive a person lacking capacity of their liberty in hospitals and care homes when it is in their best interests and necessary to protect them from harm. [13]

The "Acid Test" (Cheshire West Supreme Court 2014)

A person is deprived of liberty if: [13]

1. Under continuous supervision and control AND 2. Not free to leave

AND they lack capacity to consent to these arrangements

Critical Ruling: The person's compliance, relative contentment, or the reason for the restrictions is irrelevant. A "gilded cage is still a cage." [13]

Examples of Deprivation:

• Dementia patient on locked ward, supervised 24/7
• Learning disability patient in care home, cannot leave without escort
• Sedated ICU patient requiring physical restraint

Not Deprivation (restrictive but not DoLS):

• Competent patient agreeing to stay in hospital
• Person with capacity to consent to care home placement
• Short-term restraint during single medical procedure (use Section 5/6)

DoLS Process

Step 1: Identify Deprivation

Any professional can identify that deprivation is occurring or is likely. [13]

Step 2: Urgent Authorisation (Form 1)

• Completed by the Managing Authority (hospital/care home)
• Allows deprivation for up to 7 days (extendable to 14 days)
• Must run alongside application for Standard Authorisation
• Requires evidence person lacks capacity and deprivation is in best interests [13]

Step 3: Standard Authorisation Application (Form 4)

• Application to Supervisory Body (Local Authority/ICB)
• Provides up to 12 months authorization
• Triggers independent assessments [13]

Step 4: Assessments

Six assessments required (can be combined by qualified assessors): [13]

1. Age: Confirms person is 18+
2. Mental Health: Not detained under MHA (MHA takes precedence)
3. Mental Capacity: Lacks capacity to consent to care/treatment
4. Best Interests: Deprivation is in person's best interests, necessary, proportionate
5. Eligibility: Not ineligible due to MHA detention
6. No Refusals: No valid ADRT or LPA Attorney refusing the arrangements

Step 5: Outcome

• Authorised: Legal deprivation up to 12 months, reviewable
• Not Authorised: Arrangements must change to avoid deprivation
• Conditions: May be granted with conditions (e.g., regular family contact)

Rights Under DoLS

Person (or their representative) has: [13]

• Right to an Independent Mental Capacity Advocate (IMCA)
• Right to challenge via Court of Protection
• Right to regular review

Liberty Protection Safeguards (LPS)

Status: LPS was intended to replace DoLS (Mental Capacity (Amendment) Act 2019) but implementation has been repeatedly delayed. As of 2025, DoLS remains in effect. [13]

Proposed LPS Changes:

• Extend to domestic settings (not just hospitals/care homes)
• Streamlined assessment process
• Greater role for care homes in authorization

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10. Section 5: Acts in Connection with Care or Treatment

Section 5 provides legal protection for carers and healthcare professionals providing reasonable care to a person lacking capacity, without needing formal authorization, provided: [1]

1. Reasonable steps have been taken to establish lack of capacity
2. The act is in the person's best interests
3. The action is necessary and proportionate

Examples:

• Assisting with personal care (washing, dressing)
• Administering medication
• Taking blood tests
• Moving a patient to prevent falls
• Brief physical restraint to administer urgent treatment

Section 6: Restraint Limitations

Restraint is only permitted if: [1]

1. The person using restraint reasonably believes it is necessary to prevent harm to the person lacking capacity
2. The restraint is proportionate to the likelihood and seriousness of harm

Restraint does NOT include:

• Deprivation of liberty (requires DoLS/Court authorization)

Definition of Restraint:

• Use or threat of force to make person do something they resist
• Restriction of liberty of movement (even if no force used)

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11. Court of Protection

Role

The Court of Protection is a specialist court dealing with decisions for adults lacking capacity when: [1]

• Serious disputes arise (e.g., family vs medical team)
• Serious decisions required (e.g., withdrawal of life-sustaining treatment, organ donation, serious medical treatment disputes)
• Appointment of Deputy needed
• Challenge to LPA or ADRT

Powers

The Court can: [1]

• Make declarations about capacity
• Make decisions on behalf of the person
• Appoint Deputies (long-term decision-makers)
• Authorize deprivation of liberty outside DoLS scope (domestic settings)

Deputies

A Deputy is appointed by the Court to make ongoing decisions for someone lacking capacity (similar to LPA but court-appointed, not chosen by the person). [1]

Types:

• Property and Financial Affairs Deputy (common)
• Health and Welfare Deputy (rare, only when ongoing decisions needed)

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12. MCA vs Mental Health Act (MHA)

One of the most challenging clinical decisions is which legislation applies when a patient has mental illness and lacks capacity.

The "MHA Gap"

Problem: A person with capacity who has a mental disorder but needs treatment for a physical condition that they are refusing.

Rule: MHA cannot be used to treat physical illness unless it is a direct consequence/symptom of mental disorder. [21]

Example:

• Self-harm wounds from acute psychosis: MAY be treatable under MHA (direct consequence)
• Diabetic ketoacidosis in patient with depression refusing insulin: CANNOT use MHA (physical condition, not direct consequence)

In the second scenario, if the person has capacity, their refusal must be respected (or MCA used if they lack capacity for that decision).

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13. Key Clinical Scenarios

Scenario 1: Refusing Treatment for Sepsis

Presentation: 76-year-old with suspected sepsis refusing IV antibiotics, wants to go home to feed her cat.

Assessment:

1. Diagnostic threshold: Any impairment? (Check for delirium: confusion screen, AMT, CAM-ICU)
2. If delirium present: Functional test
   • Can she understand she has a life-threatening infection?
   • Can she retain that antibiotics may save her life?
   • Can she weigh risk of death vs going home?
   • Can she communicate decision?
3. If capacity INTACT: Respect refusal (even if "unwise"), document extensively, consider compromise (oral antibiotics, district nurse follow-up)
4. If capacity LACKING: Treat in best interests (IV antibiotics), arrange cat care, consider DoLS if restraint/detention needed

Scenario 2: Self-Discharge with Fracture

Presentation: 45-year-old intoxicated patient with forearm fracture demanding to leave ED before treatment.

Assessment:

1. Intoxication = temporary impairment: Diagnostic threshold met
2. Functional test: Likely cannot weigh risks (pain, malunion, compartment syndrome) due to intoxication
3. Lacks capacity: Prevent discharge, treat in best interests
4. Restraint proportionate: Brief restraint to apply back-slab acceptable under Section 5/6
5. Reassess when sober: If regains capacity and still refuses, then respect decision

Scenario 3: Dementia Patient Requiring Amputation

Presentation: 82-year-old with severe Alzheimer's, gangrenous foot, daughter says "no amputation, Mum wouldn't want it."

Assessment:

1. Capacity assessment: Document dementia (MMSE, diagnosis), functional test (likely cannot understand/retain/weigh)
2. Lacks capacity confirmed: Proceed to best interests
3. Consult daughter: What would Mum have wanted? Any advance statements? Values?
4. Best interests decision: Medical necessity (life-saving) vs quality of life, patient wishes
5. Outcome: If amputation is life-saving and no evidence patient would have refused, proceed despite daughter's objection (daughter has no legal veto unless she is LPA)
6. IMCA: If no family, appoint IMCA for serious treatment decision

Scenario 4: Jehovah's Witness Refusing Blood

Presentation: 28-year-old Jehovah's Witness, postpartum hemorrhage, Hb 45 g/L, refusing blood transfusion.

Assessment:

1. Diagnostic threshold: Any impairment? (If shocked/confused, may have delirium from hypovolemia)
2. If capacity INTACT: Refusal is valid, even if life-threatening. Respect autonomy. Offer alternatives (cell salvage, iron, EPO).
3. If capacity LOST (e.g., now unconscious): Check for Advance Decision refusing blood. If valid ADRT present, MUST follow. If no ADRT, treat in best interests (may include blood if life-saving, but consider patient's known wishes).
4. Husband cannot override: Spouse has no legal authority unless LPA

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14. Complications and Pitfalls

Legal Complications

1. Unlawful Detention

• Depriving liberty without DoLS authorization
• Outcome: False imprisonment, civil claim, damages

2. Battery

• Treating a person with capacity against their will
• Outcome: Criminal offense, civil claim, GMC fitness to practise

3. Negligence

• Failing to treat a person lacking capacity in their best interests
• Failing to assess capacity adequately
• Outcome: Clinical negligence claim

4. Failure to Follow ADRT/LPA

• Overriding valid Advance Decision
• Ignoring Health and Welfare LPA Attorney
• Outcome: Legal challenge, damages, professional sanctions

Clinical Pitfalls

1. Assuming Incapacity

• "She has dementia so lacks capacity"
• ERROR: Dementia is diagnostic threshold, must still perform functional test. Capacity is decision-specific.

2. Accepting "Unwise" as "Incapable"

• "He's refusing life-saving treatment, so he must lack capacity"
• ERROR: Unwise decisions do not equal incapacity (Principle 3)

3. Next of Kin Consent

• "The daughter signed the consent form"
• ERROR: Next of kin cannot consent unless they are LPA/Deputy

4. Inadequate Documentation

• "Patient lacks capacity" with no detail
• ERROR: Must document diagnostic threshold AND which functional test(s) failed

5. Failure to Reassess

• Assuming capacity status is permanent
• ERROR: Fluctuating capacity (delirium, intoxication) requires reassessment

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15. Evidence and Guidelines

Key Guidelines

Landmark Legal Cases

1. Re MB (Medical Treatment) [1997]

Issue: Can phobia render a person incapable of consenting to treatment?

Ruling: Temporary factors (panic, shock, confusion, pain) can affect capacity. Needle phobia preventing consent to Caesarean section could constitute lack of capacity for that moment. [22]

Impact: Established that capacity is time-specific and can fluctuate.

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2. P v Cheshire West and Chester Council [2014] UKSC 19

Issue: What constitutes deprivation of liberty?

Ruling: "A gilded cage is still a cage." The "acid test":

• Continuous supervision and control
• Not free to leave
• Person lacks capacity to consent

Compliance, contentment, and good care do NOT prevent deprivation. [13]

Impact: Massively expanded DoLS applications (260,000+ annually).

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3. Montgomery v Lanarkshire Health Board [2015] UKSC 11

Issue: What information must be disclosed for valid consent?

Ruling: Doctors must inform patients of "material risks"

• risks that a reasonable person in the patient's position would consider significant, NOT just risks the doctor considers significant. [23]

Impact: Shifted consent from doctor-centered to patient-centered. Relevant for "Understanding" element of capacity test.

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4. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67

Issue: Best interests in life-sustaining treatment.

Ruling: Best interests is NOT a "balance sheet" exercise but a holistic welfare assessment considering medical, emotional, and all other welfare issues. Prolonging life is NOT always in best interests. [24]

Impact: Clarified that futile or burdensome treatment can be withdrawn even if life-shortening.

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5. Wye Valley NHS Trust v Mr B [2015] EWCOP 60

Issue: Forced amputation in capacitous patient refusing.

Ruling: A patient with capacity can refuse amputation even if refusal will result in death. Autonomy prevails. [25]

Impact: Reinforced sanctity of autonomous refusal, even when fatal.

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16. International Comparison

• similar functional test | | Northern Ireland | Mental Capacity Act (NI) 2016 | Fused MCA/MHA approach (not yet fully implemented) | | USA | State-specific (no federal law) | Advance directives, healthcare proxies, guardianship vary by state | | Australia | State-specific (e.g., Guardianship Acts) | Similar principles, state-based tribunals |

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17. Prognosis and Outcomes

Capacity Outcomes

DoLS Outcomes (2019-20 England Data) [13]

• Applications: 263,000
• Granted: 63% of completed assessments
• Average duration: 6-12 months
• Most common setting: Care homes (67%), hospitals (33%)

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18. Patient and Layperson Explanation

Can I sign for my mum?

No. In the UK, being "Next of Kin" does not give you legal power to sign consent forms for someone who cannot consent themselves.

So who decides?

The doctors decide, but the law says they must ask you what your mum would have wanted. They make the decision based on her "best interests," and you are the expert on what she would have wanted. You work together, but you do not sign the form.

What if Mum made me her "Power of Attorney"?

There are two types:

1. Financial Power of Attorney: You manage her money and bills. You cannot make medical decisions.
2. Health and Welfare Power of Attorney: You can make medical decisions, but only if it is registered with the Office of the Public Guardian. Ask the doctors to check it is valid.

What is an Advance Decision?

Sometimes called a "Living Will." It is a document your mum wrote when she was well, saying what treatment she would refuse if she became too unwell to decide. For example, "I do not want to be on a life-support machine if I have dementia."

If it is valid (written, signed, witnessed, specific), doctors must follow it.

What is a DoLS?

Deprivation of Liberty Safeguards.

Because your mum is confused from her dementia, she does not understand she needs to stay in hospital for safety. The hospital has to stop her leaving (locking doors, supervising her constantly). To do this legally (so it is not kidnapping), they apply for a DoLS.

It is a safeguard to make sure the hospital is only keeping her because she really needs it, and an independent person checks it is the right thing to do.

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19. Examination Focus

Common Exam Questions

MRCP/MRCGP/FRCA Ethics Stations

Question 1: "An 80-year-old woman with dementia needs a below-knee amputation for gangrene. She lacks capacity. Her daughter refuses 'because it will upset her.' What do you do?"

Model Answer:

• Confirm lack of capacity (two-stage test documented)
• Explain to daughter that she cannot refuse (unless Health \u0026 Welfare LPA)
• Best interests assessment: medical necessity (life-saving), patient's known wishes (consult daughter for this), least restrictive option
• If amputation is in best interests, proceed despite daughter's objection
• If unbefriended, appoint IMCA (serious treatment)

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Question 2: "What are the 4 criteria for capacity assessment?"

Model Answer: The functional test (Stage 2) requires the person to be able to:

1. Understand the relevant information
2. Retain it long enough to make the decision
3. Use or Weigh the information
4. Communicate the decision (by any means)

Failure of ANY ONE means lack of capacity for that decision (provided Stage 1 diagnostic threshold is also met).

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Question 3: "Difference between MCA and MHA?"

Model Answer:

• MCA: For treating physical or mental disorder in someone lacking capacity. Requires best interests. Cannot detain without DoLS.
• MHA: For treating mental disorder in someone who may have capacity but is refusing. Can override refusal. Can detain (Section 2/3).
• Key: MHA generally cannot treat physical illness (e.g., cannot section someone to fix broken leg).

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Question 4: "When must you appoint an IMCA?"

Model Answer: When a person:

• Lacks capacity
• Is unbefriended (no family/friends to consult, apart from paid carers)
• Faces:
  • Serious medical treatment (e.g., major surgery, chemo, withdrawal of life-sustaining treatment), OR
  • Change of accommodation (care home > 8 weeks, hospital > 28 days)

Exceptions: Emergency treatment, MHA detention (different advocate).

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Viva Points

"Give an example of an unwise decision that does NOT indicate lack of capacity."

A Jehovah's Witness refusing blood transfusion despite life-threatening anemia. If they understand the risk (death), can weigh it against their religious beliefs, and communicate their refusal, they have capacity even though the outcome may be fatal. Unwise ≠ Incapable (Principle 3).

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"How do you manage fluctuating capacity?"

• Identify cause (delirium, intoxication, pain)
• Treat underlying cause
• If decision can wait: Wait for capacity to return
• If urgent: Treat in best interests (Section 5), reassess when capacity restored
• Document fluctuation and serial assessments

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"What is the difference between an LPA and a Deputy?"

• LPA: Chosen by the person when they had capacity; registered with OPG; activated when capacity lost
• Deputy: Appointed by Court of Protection when person never made LPA and now lacks capacity; similar powers but court-supervised

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20. References

1. Department for Constitutional Affairs. Mental Capacity Act 2005: Code of Practice. TSO (The Stationery Office). 2007. ISBN: 9780113228492.

2. Emmett C, Poole M, Bond J, Hughes JC. Homeward bound or bound for a nursing home? Prospective cohort study of features associated with location of discharge for old people from a general medical ward. J Am Geriatr Soc. 2013;61(7):1146-1151. doi:10.1111/jgs.12316. PMID: 23772804.

3. Karlawish J. Assessment of decision-making capacity in adults. UpToDate. 2022. Accessed from clinical review literature synthesis (PMID: 16723907).

4. Bellelli G, Morandi A, Davis DH, et al. Validation of the 4AT, a new instrument for rapid delirium screening: a study in 234 hospitalised older people. Age Ageing. 2014;43(4):496-502. doi:10.1093/ageing/afu021. PMID: 24590568.

5. Mental Capacity Act 2005, c.9. UK Public General Acts. Available at: https://www.legislation.gov.uk/ukpga/2005/9/contents

6. British Medical Association, the Law Society. Assessment of mental capacity: guidance for doctors and lawyers. 4th ed. London: Law Society; 2015. ISBN: 9781784460259.

7. Sessums LL, Zembrzuska H, Jackson JL. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-427. doi:10.1001/jama.2011.1023. PMID: 21791691.

8. National Institute for Health and Care Excellence. Decision-making and mental capacity. NICE guideline [NG108]. Published October 2018. Available at: https://www.nice.org.uk/guidance/ng108

9. Inouye SK, Westendorp RG, Saczynski JS. Delirium in elderly people. Lancet. 2014;383(9920):911-922. doi:10.1016/S0140-6736(13)60688-1. PMID: 23992774.

10. General Medical Council. Decision making and consent. GMC guidance. Published November 2020. Available at: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent

11. Prince M, Knapp M, Guerchet M, et al. Dementia UK: Update. 2nd edition. Alzheimer's Society; 2014. Evidence synthesis PMID: 25406056.

12. Maas AIR, Menon DK, Adelson PD, et al. Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research. Lancet Neurol. 2017;16(12):987-1048. doi:10.1016/S1474-4422(17)30371-X. PMID: 29122524.

13. P (by his litigation friend the Official Solicitor) v Cheshire West and Chester Council and another; P and Q (by their litigation friend, the Official Solicitor) v Surrey County Council [2014] UKSC 19. Supreme Court judgment March 2014.

14. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000-1025. doi:10.1177/0269216314526272. PMID: 24651708.

15. Office of the Public Guardian. Lasting power of attorney: A guide. UK Government. Updated 2023. Available at: https://www.gov.uk/government/organisations/office-of-the-public-guardian

16. Moye J, Marson DC. Assessment of decision-making capacity in older adults: an emerging area of practice and research. J Gerontol B Psychol Sci Soc Sci. 2007;62(1):P3-P11. doi:10.1093/geronb/62.1.p3. PMID: 17284552.

17. Alfandre D. "I'm going home": discharges against medical advice. Mayo Clin Proc. 2009;84(3):255-260. doi:10.1016/S0025-6196(11)61143-9. PMID: 19252114.

18. Keeling A, Hodgkinson L. The Mental Capacity Act 2005 and people with learning disabilities. Br J Learn Disabil. 2010;38(3):209-214. doi:10.1111/j.1468-3156.2009.00597.x

19. Mental Capacity Act 2005 Sections 24-26: Advance decisions to refuse treatment. UK Legislation. Available at: https://www.legislation.gov.uk/ukpga/2005/9/part/1/chapter/4

20. Mental Capacity Act 2005 Sections 35-41: Independent Mental Capacity Advocates. UK Legislation. Available at: https://www.legislation.gov.uk/ukpga/2005/9/part/1/chapter/6

21. Department of Health. Mental Health Act 1983: Code of Practice. TSO. 2015. ISBN: 9780113228096.

22. Re MB (Medical Treatment) [1997] 2 FLR 426. Court of Appeal judgment on capacity and needle phobia.

23. Montgomery v Lanarkshire Health Board [2015] UKSC 11. Supreme Court judgment on informed consent.

24. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67. Supreme Court judgment on best interests and life-sustaining treatment.

25. Wye Valley NHS Trust v Mr B [2015] EWCOP 60. Court of Protection judgment on capacitous refusal of amputation.

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Medical Disclaimer: MedVellum content is for educational purposes and clinical reference. Clinical decisions should account for individual patient circumstances. Always consult current legislation, institutional policies, and seek senior/legal advice for complex capacity and deprivation of liberty cases.