Capacity, advance decisions, proxies and decisions for people who cannot decide

Serious illness can impair decision-making temporarily through delirium, fatigue, breathlessness, pain, medication effects or communication difficulty. Before concluding that a person cannot decide, clinicians should take practicable steps to support participation where time allows: treat reversible distress, choose a better time, simplify information, use communication aids and involve trusted support if the person wants this.

The detailed capacity-assessment method belongs in the existing ClinicalEdu Mental Capacity course. This module focuses on what happens when an end-of-life decision must be made and the person cannot make that specific decision.

England and Wales use the Mental Capacity Act 2005, including best-interests decision-making, advance decisions to refuse treatment and lasting powers of attorney. Scotland uses the Adults with Incapacity (Scotland) Act 2000 and Part 5 treatment authority, with specific proxy and certification arrangements. Northern Ireland's Mental Capacity Act 2016 remains only partially commenced, so current Department of Health status and local legal/governance advice must be checked.

Professional guidance such as the GMC's "overall benefit" framework should be understood alongside, not instead of, the applicable law. The phrase does not create a separate statutory test.

Aintree is a major England-and-Wales authority on treatment decisions for a person lacking capacity. Its practical teaching value is that best interests should consider the matter from the patient's perspective, including their wishes, feelings, beliefs and values, rather than reducing the analysis to a narrow biomedical calculation. The question is not simply whether treatment can prolong life, but what benefit and burden mean for this person.

Advance statements and previous conversations may therefore be important evidence even when they are not legally binding refusals. If a legally binding advance refusal exists, validity and applicability must be checked under the relevant law before acting.

Family members often provide essential information about the person and should usually be consulted where appropriate, but "next of kin" is not itself a universal adult treatment-decision role. A legally authorised proxy may have decision-making authority, but the appointment and scope must be verified. In Scotland, the Part 5 framework has specific statutory relationships with welfare proxies; in England and Wales, an attorney's authority depends on the LPA and decision concerned.

When a family member disagrees with the clinical team, the first task is often to identify whether the disagreement is about facts, values, legal authority or trust. Clear explanation, senior review, ethics support or legal advice may resolve uncertainty before conflict becomes entrenched.

Not every life-sustaining-treatment decision requires a court application. In An NHS Trust v Y, the Supreme Court held that where the Mental Capacity Act is followed, the relevant professional guidance is observed and there is agreement about best interests, there is no mandatory requirement in every case to seek court approval before withdrawing clinically assisted nutrition and hydration from a patient in a prolonged disorder of consciousness. Disagreement or legal uncertainty can change the position.

Learners should therefore avoid two absolutes: "the court must always decide" and "the court is never needed". Escalate serious unresolved disagreement, uncertainty over authority, or doubt about the law through senior clinical, ethics, legal or judicial routes as appropriate.

| Jurisdiction | Core framework |

| --- | --- |

| England and Wales | Mental Capacity Act 2005; best interests, ADRT and LPA provisions. |

| Scotland | Adults with Incapacity (Scotland) Act 2000; Part 5 treatment authority and proxy processes. |

| Northern Ireland | Mental Capacity Act (NI) 2016 is partially commenced; check current DoH NI implementation and local advice. |

| Person/record | Role |

| --- | --- |

| Patient's prior wishes and values | Important evidence about what matters and, in some cases, legally relevant requirements. |

| Family/people close | Can provide evidence and support; not automatically legal decision-makers. |

| Legal proxy | Authority depends on a valid appointment and its scope. |

| Clinical team | Identifies clinically appropriate options and applies the relevant decision framework. |

1. A patient with delirium cannot discuss a non-urgent treatment today, but the delirium is potentially reversible. Support and reassess before moving unnecessarily to substitute decision-making.

2. A daughter says that as "next of kin" she can demand withdrawal of all treatment. Clarify her important consultative role and check whether any formal legal authority exists.

3. A team discusses life-sustaining treatment without considering the patient's repeatedly expressed wish to avoid prolonged dependence. Prior values must be brought into the analysis.

• Maximise participation where practicable.
• Identify the jurisdiction and legal framework.
• Check for valid advance decisions/refusals and formal proxy authority.
• Elicit prior wishes, beliefs and values.
• Separate family knowledge from legal authority.
• Escalate unresolved serious disagreement or legal uncertainty.