27.1 Communication, Decision-Makers, Advance Directives, and DNR (05.A, B, G)
Key Takeaways
- Decision-making capacity is a clinical, decision-specific judgment: the patient must understand, appreciate, reason, and communicate a choice. Document those four elements; competence is a court determination, not a Glasgow Coma Scale number.
- A named health-care agent or proxy usually outranks default family surrogates. Default surrogate order is a state-law construct and is not one national statute — do not recite California, New York, or Texas language as if it bound every U.S. ICU.
- A living will states future preferences. POLST/MOLST/POST/MOST forms are portable clinician orders for people already seriously ill. DNR/DNI and Allow Natural Death orders govern resuscitation and intubation; they do not, by themselves, cancel antibiotics, surgery, or ICU care.
- Do not attach an organ-donation request to the first disclosure that death has occurred or that life-sustaining treatment will be stopped. Notify the organ procurement organization; a designated requestor leads the donation conversation after the death or goals-of-care discussion.
- When surrogates conflict, repeat the family meeting, offer a second opinion, involve palliative care and an ethics consult, and follow hospital policy. Courts are last, not first.
Why this conversation is an examination topic
Quick Answer: If the patient has capacity, the patient decides. If not, a named health-care agent usually decides using substituted judgment, then best interests if values are unknown. Default surrogate rank is state law, not a single national ladder. Living wills guide; POLST (and state cousins MOLST, POST, MOST) are portable medical orders. Do-not-resuscitate (DNR) / do-not-intubate (DNI) / allow natural death (AND) constrain CPR and airway rescue — they do not by themselves mean “no ICU.” Separate the death or withdrawal conversation from organ donation. Document capacity. Call ethics when conflict stalls care.
Independent OpenExamPrep teaching in this section covers communication, decision-makers, advance directives, and DNR listed under Ethics, research, and practice-based learning in the ABPN Content Specifications. This is not an ABIM, ABPN, AAN, or SCCM product. Hospital policy and the law of the state where the bed sits still govern who signs the consent and how a DNR is written; the examination tests whether you know who should be talking, which document actually binds the crash team, and what you must not attach to the first bad-news meeting.
Most neuro ICU deaths follow a conversation, not a failed code. The skill is not eloquence. It is naming a decision-maker, matching interventions to the patient’s known goals, writing orders that mean what they say, and keeping organ donation off the first death sentence.
Capacity is clinical, competence is legal
Decision-making capacity is assessed at the bedside for this decision, at this time. A patient may have capacity to refuse a central line and lack capacity to consent to hemicraniectomy. Intubation, aphasia, and a low Glasgow Coma Scale (GCS) score raise the probability that capacity is absent; they do not replace the assessment when communication is still possible (writing, yes/no cards, a reliable blink).
The usual four elements, in the tradition of Appelbaum’s clinical standard, are:
- Understanding — can restate in their own words the condition, the proposed intervention, the alternatives, and the main risks.
- Appreciation — grasps that those facts apply to them (not “people with brain bleeds,” but “my bleed”).
- Reasoning — can compare options and connect a choice to their values (even if you would choose differently).
- Communication of a choice — expresses a reasonably stable preference, including through an established alternative method if speech is gone.
Competence (or incompetency) is a judicial determination. You do not “declare someone incompetent” in the chart. You document capacity for a named decision, the method you used, who was present, and why a surrogate is now acting. Reassess when sedation lightens, language returns, or a new high-stakes decision appears.
Delirium, untreated pain, hypoxia, hyponatremia, and a residual propofol infusion are confounders, not character flaws. Treat reversible contributors before you write that the patient “refused.” A frightened “I want everything” at 03:00 after a first seizure is not the same as a repeated, understood choice the next afternoon.
| Term | Who determines it | What it authorizes |
|---|---|---|
| Capacity | Treating clinicians, decision-specific | The patient may accept or refuse that intervention |
| Incapacity | Clinicians, documented | A surrogate or agent may decide |
| Competence | Court | Guardianship or other legal authority |
| Health-care agent / proxy | Patient, in a directive | Substituted judgment once capacity is lost |
| Default surrogate | State statute or common law | Acts if no agent; rank varies by state |
Who decides when the patient cannot
A valid durable power of attorney for health care, health-care proxy, or similarly named agent is the usual first stop. That person is not “next of kin” by blood. They are the person the patient picked. Many states require the agent to use substituted judgment (what this patient would have chosen) rather than the agent’s own taste.
If there is no named agent, clinicians turn to a default surrogate. Textbooks often print a tidy ladder — court-appointed guardian, spouse, adult children, parents, adult siblings, then other relatives or a close friend. That list is a teaching sketch, not the law of the United States. Some states include a domestic partner or a designated adult; some require a majority of equally ranked adult children; some have no comprehensive default-surrogate statute and rely on custom plus risk management. Do not recite one state’s Health Care Decisions Act as if it were federal. On the examination, the scoring move is: named agent before default family, know that default rank is jurisdictional, and do not invent a national ordinal.
When several equally ranked people disagree, do not pick the loudest relative in the waiting room. Repeat a structured meeting, bring the same medical facts once, ask what the patient would have said, and escalate to palliative care and ethics consultation rather than splitting the difference with a random scan.
Minors and pregnant patients add statutory overlays (emancipation, parental authority, fetal-interest statutes). Those are local law problems. The examination-relevant point is that you still start with capacity, then the legally recognized decision-maker, then hospital counsel if those collide.
Substituted judgment, then best interests
Substituted judgment asks: if this person could hear the prognosis and the options, what would they choose given their prior statements, faith, occupation, and lived definition of an acceptable life? A prior comment “I never want a feeding tube” is evidence; it is not a POLST. Best interests is the fallback when values are unknown: weigh burdens and benefits as a reasonable person in the patient’s circumstances would. Best interests is not “what I would want for my parent.”
Advance directives, POLST, DNR, DNI, and AND
Advance directives are umbrella legal documents completed while the person has capacity. The two core pieces are a living will (treatment preferences if later incapacitated, often for terminal illness or permanent unconsciousness) and a health-care proxy / durable power of attorney for health care (who speaks). Every adult can complete them. Emergency medical technicians generally cannot treat a living will as a crash-cart order.
Physician / portable orders for life-sustaining treatment (POLST) — also MOLST, POST, or MOST depending on the state — are medical orders signed by an authorized clinician, usually with the patient or surrogate, for people who are already seriously ill or frail. They travel across settings on distinctive paper or in the electronic record. They typically address CPR, intubation and ventilation, transfer, antibiotics, and artificial nutrition. They are not a living will with a fancy name. A healthy 40-year-old does not need a POLST; they need a proxy and a living will.
DNR (sometimes DNAR, do not attempt resuscitation) is an order: if the patient has a pulseless arrest or respiratory arrest, do not start CPR, defibrillation, or typical ACLS drugs for that event. DNI declines tracheal intubation. Neither order, standing alone, forbids vasopressors, osmotherapy, external ventricular drains, antibiotics, or surgery. The 2022 American Heart Association / American Stroke Association (AHA/ASA) spontaneous intracerebral hemorrhage (ICH) guideline treats limiting other indicated medical and surgical care solely because of DNAR status as harmful unless those limits were separately requested. A DNR written at 02:00 after a GCS 5 presentation is also a prognostication problem — that belongs in the next section — but the documentation point here is: DNR is not “comfort care only” unless someone wrote that too.
Allow natural death (AND) is institutional language some hospitals prefer because it names the goal (uninterrupted dying) rather than the withheld procedure. It is still an order set, not a new federal category. If the unit uses AND, the chart must still specify CPR, intubation, dialysis, and nutrition so the night nurse is not guessing.
| Document or order | Legal vs medical | Who follows it in an emergency | Typical population |
|---|---|---|---|
| Living will | Legal preference statement | Guides clinicians and surrogates; not an EMS order by itself | Any adult |
| Health-care proxy / DPOA-HC | Legal appointment | Agent decides once capacity is lost | Any adult |
| POLST / MOLST / POST / MOST | Portable medical order | Clinicians and, in participating states, EMS | Seriously ill or frail |
| Inpatient DNR / DNI | Hospital medical order | Inpatient team; may not travel | Hospitalized patients |
| Out-of-hospital DNR bracelet / form | Medical order, state-specific | EMS | Community / facility |
| AND order set | Institutional order language | Inpatient team | End-of-life care |
Conflict, ethics consult, and what not to say in the first hour
Use a quiet room, sit down, lead with a warning shot, give the headline in plain language (“He has died by neurologic criteria” or “She will not recover a life she would recognize”), then stop talking long enough for the news to land. NURSE statements (Name the emotion, Understand, Respect, Support, Explore) beat a physiology lecture. VALUE (Value comments, Acknowledge emotion, Listen, Understand the person, Elicit questions) is the same idea in family-meeting research language.
When families split, or when a surrogate demands treatments that cannot achieve any physiologic goal, do not win by attrition at the bedside. Offer a second independent opinion. Involve palliative care early — concurrent with intensive care, not as a consolation prize. Request an ethics consultation when values conflict, when staff moral distress is rising, or when a legally unclear decision-maker is blocking needed orders. Hospital policy may add a review committee. Courts are for intractable legal disputes, not for every sad case.
The 2023 AAN/AAP/CNS/SCCM brain death / death by neurologic criteria (BD/DNC) guideline, whose examination technique lives in the brain-death chapter, also speaks to communication: tell families you intend to evaluate for BD/DNC, allow presence during the examination if they wish, explain that spinal movements can persist, and after death is determined, organ support is no longer treatment of a living patient unless donation is planned. Policies should include a process for disagreement and a reasonable period of accommodation. That is not an invitation to run the ventilator for weeks against a completed death examination; it is an instruction not to ambush a family in the hallway and extubate ten minutes later.
Do not coerce, sandwich, or “soft launch” organ donation during the first disclosure that the patient has died or that life-sustaining treatment will be withdrawn. Centers for Medicare & Medicaid Services (CMS) hospital conditions of participation require timely notification of the organ procurement organization (OPO) when death is imminent or has occurred. The designated requestor — typically OPO staff, not the intensivist who just said “your mother has died” — leads the donation conversation. Your job in that first meeting is truth, presence, and a plan for the body and the family. Donation comes after, from a different voice.
Worked bedside scenarios
A 62-year-old with a cerebellar hematoma is awake, dysarthric, and consistently refuses surgery after you explain hydrocephalus and the chance of sudden decline. Document the four capacity elements and honor the refusal. Calling the adult children to “override” a capacitated patient is the error.
A 78-year-old arrives GCS 6 after ICH. A daughter produces a living will that declines “heroic measures if terminal.” There is no POLST. Full ICU care including intubation, if needed to complete a time-limited trial, is still the default until a surrogate using substituted judgment, and preferably a clinician-signed order set, translates that living will into DNR/DNI or comfort-focused orders. Do not treat the photocopy as an EMS DNR.
A spouse wants “everything.” An adult son wants withdrawal tonight. There is a named health-care agent: the spouse. The son does not outrank the agent because he is louder. If the spouse’s requests are physiologically futile (CPR in a completed BD/DNC examination, for example), that is a futility and policy problem, not a vote.
The fellow mentions “and they can donate” in the same sentence as “he has died.” Stop. Finish the death conversation. Notify the OPO. Let the designated requestor return.
Exam traps
Treating GCS or intubation as automatic incapacity without attempting a communication method. Reciting one state’s surrogate statute as national law. Equating a living will with a POLST or a DNR. Using DNR as a synonym for no pressors, no drain, and no reversal. Combining the first death disclosure with a donation ask. Skipping ethics when equally ranked surrogates are irreconcilable. Failing to document the capacity assessment that justified a surrogate’s signature.
A dysarthric but consistently communicating patient refuses hematoma evacuation after a teach-back of risks, benefits, and alternatives. Which documentation best supports honoring that refusal?
Which statement correctly distinguishes a POLST form from a living will?
No health-care agent is named. Several relatives claim authority. What is the most accurate next step conceptually?
Brain death/death by neurologic criteria has just been determined. The intensivist is about to meet the family for the first time with that news. Which action is most appropriate regarding organ donation?