Advance Directives and Surrogate Decision-Making

• Types of advance directive:
• Living will — written instructions about specific interventions under specific circumstances.
• Durable power of attorney for health care (health care proxy) — appoints a person to decide. Generally the more useful instrument, because it can respond to situations the patient never anticipated.
• POLST/MOLST — actionable clinician orders for the seriously ill, travelling with the patient.
• Order of authority:

1. 1.The patient's own expressed wishes, including a clear advance directive, take precedence.
2. 2.Substituted judgement by the appointed proxy — deciding as the patient would have decided.
3. 3.Best interests, used only when the patient's wishes are genuinely unknown.

• Without an appointed proxy, most states apply a statutory hierarchy — typically spouse, then adult children, then parents, then siblings.
• A surrogate cannot override a patient's own clearly documented refusal, and family distress is not a reason to disregard a valid directive.

Capacity, the gateway concept

• Decision-making capacity: a clinical determination any physician can make, and it is decision-specific and time-specific — a patient may lack capacity to consent to a Whipple yet retain capacity to refuse a blood draw. Competence is the parallel legal term decided by a judge; boards test this distinction.
• The four abilities (Appelbaum's widely used framework): the patient can communicate a choice, understand the relevant information, appreciate how it applies to their own situation, and reason by manipulating that information logically. Losing any one defeats capacity. A patient who makes a choice most people would call unwise still has capacity if the four abilities are intact — refusal alone is never evidence of incapacity.

The decisional standards, in order

• Expressed wishes: the patient's own prior directive controls. In Cruzan v. Director, Missouri Department of Health (1990) the Supreme Court permitted states to demand clear and convincing evidence of those wishes before withdrawing life-sustaining treatment — the reason vague hearsay ("he'd never want to be a vegetable") is weaker than a written document.
• Substituted judgment: the surrogate reconstructs what the patient would choose, using values, religion, and prior statements — not what the surrogate wants.
• Best interests: a burdens-versus-benefits calculus, reserved for patients whose preferences were never expressed — never-competent adults, young children.

Statutory and ethical scaffolding

• Patient Self-Determination Act (1990): requires hospitals, nursing homes, and other facilities receiving Medicare/Medicaid funds to ask patients on admission whether they have an advance directive and to inform them of their right to make one. It does not require them to have one.
• AMA Code of Medical Ethics: withdrawing an already-started treatment and withholding it are ethically equivalent; a time-limited trial of ventilation is therefore permissible.
• DNR/DNI is not "do not treat": it addresses arrest only. Antibiotics, dialysis, and surgery remain on the table unless separately declined.
• Emergency exception: consent is presumed when a life-threatening emergency precludes obtaining it and no directive is known.

• Step 1 — Is the patient decisional right now? If the patient can express a choice, understand, appreciate, and reason, the conversation ends there. Delirium, intoxication, or hypoxia may be reversible; treat the reversible cause and reassess rather than reflexively calling a surrogate.
• Step 2 — Is there a directive, and does it fit this situation? A living will stating "no mechanical ventilation if I have an irreversible terminal condition" does not govern intubation for a reversible aspiration pneumonia in an otherwise healthy patient. Mismatch between the document's stated circumstance and the current one is the most common trap.
• Step 3 — Who speaks? A health care proxy named by the patient outranks any family member, including a spouse, regardless of who is more emotionally invested or physically present. Absent a proxy, apply the state hierarchy (typically spouse, adult children, parents, siblings).
• Step 4 — Which standard? Direct the surrogate explicitly: "Knowing him as you do, what would he say if he could speak?" This is substituted judgment, and it is the single best phrasing on exams. Drop to best interests only when the answer is genuinely unknowable.

• A named health care proxy beats the next of kin. The single most tested association: the patient's appointed agent — even a friend or unmarried partner — outranks a spouse, parent, or adult child not designated by the patient.
• Substituted judgment before best interests. The correct answer stem is almost always "ask the surrogate what the patient would have wanted," not "do what seems medically best." Best interests applies only to never-competent patients (young children, lifelong severe intellectual disability) or when wishes are truly unknown.
• Refusing recommended care is not incapacity. A patient with intact understanding, appreciation, reasoning, and expression may refuse dialysis, transfusion, or amputation. The distractor is "obtain a psychiatric evaluation to declare him incompetent" — capacity is a clinical judgment, and only a court declares incompetence.
• Withdrawing = withholding. Per the AMA Code of Medical Ethics, stopping a ventilator already in use is ethically and legally equivalent to never starting it. This licenses time-limited trials and is a frequent right answer.
• Clear and convincing evidence is the Cruzan buzzword for withdrawing life-sustaining treatment from a patient in a persistent vegetative state — the reason written directives outperform recollected conversations.
• DNR does not mean "do not treat." A DNR patient can still receive ICU care, pressors, surgery, and antibiotics. Conversely, POLST/MOLST are actionable clinician orders that follow the patient across settings; a living will is a patient statement requiring interpretation.
• **The Patient Self-Determination Act obliges facilities to ask and inform, not to obtain a directive.** Care can never be conditioned on having one.
• Emancipated minors (married, military, financially independent, or in some states parenting) consent for themselves; minors may also generally consent for STI, contraception, and substance-use care, though specifics vary by state — an AAP-endorsed carve-out worth remembering.
• Escalation order: clarify with the surrogate → family meeting → ethics committee → court. Jumping straight to a court order is nearly always wrong.