Human Development

Goals of care discussions and advance directives

Clinical Overview and When to Initiate Goals of Care Discussions

— Eliciting values and priorities (independence, longevity, quality vs quantity)

— Sharing prognostic information honestly and in lay language

— Translating values into specific medical orders (DNR/DNI, intubation, dialysis, artificial nutrition, hospitalization)

— Documenting in the chart and, when appropriate, on portable orders (POLST/MOLST)

— New diagnosis of serious illness (metastatic cancer, advanced HF/COPD/CKD/dementia, ALS)

— Hospitalization for exacerbation of chronic illness, especially ICU admission

— Functional decline (falls, weight loss, recurrent infections, frailty)

— Transitions of care — discharge to SNF, hospice referral, dialysis initiation

— Before high-risk procedures or surgery in frail patients

— At routine primary care visits for adults ≥65 or with serious illness (Medicare reimburses Advance Care Planning CPT 99497/99498)

— Waiting until the patient is decisionally incapacitated or in extremis

— Asking "Do you want everything done?" (uninformative, leading)

— Treating code status as the entire conversation rather than the endpoint

Board pearl: The single best trigger to initiate a goals-of-care conversation on Step 3 is a new serious diagnosis or hospitalization for chronic illness exacerbation — not waiting for terminal decline. Early, iterative discussions improve concordance between care delivered and patient wishes and reduce non-beneficial ICU days.

Goals of care (GOC) discussions are structured conversations aligning medical interventions with a patient's values, preferences, and prognosis — distinct from but often culminating in advance directives (ADs) and code status decisions.

Core components:

When to initiate (the "surprise question": Would I be surprised if this patient died in the next 12 months? If "no" → trigger GOC):

Step 3 outpatient framing: GOC is longitudinal, not a single event — revisit at major clinical inflection points and at least annually for seriously ill patients.

Avoid common errors:

Presentation Patterns and Key History to Elicit

— Elderly patient with advanced dementia presenting with aspiration pneumonia or recurrent admissions; family asks about feeding tube

— Metastatic cancer patient with declining performance status (ECOG 3–4) considering another chemotherapy line

— End-stage HF/COPD with frequent ED visits, on maximal therapy

— ICU patient with multi-organ failure and poor prognosis; family meeting needed

— Pre-op evaluation of frail elder for high-risk surgery — clarify code status intra-op

— Newly diagnosed terminal illness requesting "no heroic measures"

— Reframe: ensure patient understands current illness state

— Expect emotion: acknowledge before pivoting to plans

— Map out values: "What's most important to you as you think about the future?"

— Align: reflect back what you heard

— Plan: propose treatment matching values

— "What is your understanding of your illness?" (assesses insight)

— "What are you hoping for? What are you worried about?"

— "If you became more sick, what abilities would be so important that you couldn't imagine living without them?"

— "Who would speak for you if you couldn't?" (identifies surrogate)

— Patient stating "I don't want to live like this"

— Family conflict over treatment direction

— Repeated readmissions within 30 days for same condition

— Hospice eligibility met (prognosis ≤6 months) but not addressed

Key distinction: Advance directive = patient's written instructions and/or surrogate designation made while capacitated; goals of care discussion = the dynamic clinical conversation that informs and updates those directives. The AD is the artifact; GOC is the process. Step 3 vignettes often test recognizing that an outdated AD must be reviewed and reconfirmed at each major clinical change rather than mechanically applied.

Typical Step 3 stems prompting a GOC discussion:

Key history domains (use REMAP or SPIKES framework):

Specific questions that score on exams:

Red flags requiring immediate GOC escalation:

Assessing Decision-Making Capacity and Identifying the Right Decision-Maker

— Understanding the medical information disclosed

— Appreciation of how it applies to oneself

— Reasoning — comparing options logically

— Expressing a choice consistently

1. Healthcare power of attorney / healthcare proxy (patient-designated)

2. Legal guardian

3. Spouse (or registered domestic partner)

4. Adult children (majority rule)

5. Parents

6. Adult siblings

7. Other relatives or close friend

— Substituted judgment — what would the patient have wanted? (preferred)

— Best interest — only if patient's wishes are unknown

— Refusing care ≠ lacks capacity (autonomous refusal is allowed if capacity intact)

— Diagnosis of dementia, psychiatric illness, or being a minor does not automatically equal incapacity

— Family disagreement does not override a properly designated healthcare proxy

Step 3 management: When a patient with fluctuating delirium has lucid intervals and a clearly stated preference matching a prior AD, document the lucid-interval discussion and honor the patient's voice directly — do not default to the surrogate. Reassess capacity at each major decision point rather than relying on a single snapshot.

Capacity is a clinical, decision-specific determination made by any physician (not the same as legal competence, which requires a court).

Four components (must demonstrate all four for the specific decision):

Capacity is sliding-scale: higher-stakes decisions (refusing life-saving therapy) demand more rigorous capacity assessment than low-risk ones.

Tools: Aid to Capacity Evaluation (ACE), MacCAT-T; psychiatry consult for ambiguous cases (depression, psychosis, fluctuating delirium).

If patient lacks capacity, hierarchy of surrogate decision-makers (varies by state, but typical order):

Surrogates apply two standards in order:

Step 3 exam traps:

Types of Advance Directives — Living Will, DPOA-HC, POLST/MOLST

— Written document specifying which treatments a patient does/does not want if incapacitated and facing terminal illness or persistent vegetative state

— Often addresses mechanical ventilation, CPR, artificial nutrition/hydration, dialysis

— Limitations: may not anticipate the specific clinical scenario; vague terms ("no heroic measures") require interpretation

— Legal designation of a surrogate decision-maker who becomes active only when patient loses capacity

— Generally more flexible than a living will — surrogate can respond to real-time scenarios

— "Durable" = remains valid through incapacity (unlike general POA)

— Portable medical orders signed by clinician + patient/surrogate

— Travel across care settings (home → EMS → ED → SNF)

— Address CPR, intubation, hospital transfer, artificial nutrition, antibiotics

— Intended for patients with serious illness or frailty, typically prognosis ≤1 year

— Not the same as a living will — POLST is an actionable medical order; living will is a directive that requires clinician translation

Key distinction: A living will is a directive to physicians; a DPOA-HC appoints a person; a POLST is a medical order set. On exam, EMS arriving at a home to find a patient in arrest will honor an out-of-hospital DNR or POLST but cannot act on a living will alone. When both a DPOA-HC and living will exist and conflict, the surrogate's interpretation of substituted judgment generally governs — though the living will provides strong evidence of prior wishes.

Living will

Durable Power of Attorney for Healthcare (DPOA-HC) / Healthcare proxy

Five Wishes — popular layperson document combining living will + proxy + values/comfort preferences; legally valid in most states

POLST / MOLST / POST (Physician/Medical Orders for Life-Sustaining Treatment)

Out-of-hospital DNR — separate document directing EMS not to resuscitate in the field

Code Status — Full Code, DNR, DNI, and the Nuances

— DNR ≠ "do not treat" — patients still receive antibiotics, surgery, chemo if consistent with goals

— DNR ≠ comfort care only — that's a separate decision

— A DNR patient with reversible arrest cause (e.g., anaphylaxis pre-procedure) — discuss temporary suspension of DNR for OR/procedure

— ASA and ACS guidelines: never auto-rescind DNR for surgery

— Three options: (1) full suspension during anesthesia/PACU, (2) procedure-directed (reverse only readily reversible events from anesthesia), (3) goal-directed (resuscitate only if consistent with patient's outcome goals)

— Document the agreed approach and when it resumes post-op

CCS pearl: On a CCS case, when a hospitalized patient's family says "do everything," order a family meeting and palliative care consult before defaulting to full code in a clearly dying patient. Document the discussion, the prognosis shared, and the consensus reached. Reassess code status at each transition (floor → ICU, pre-op, before discharge to SNF).

Full code — all resuscitative measures including CPR, defibrillation, intubation, vasopressors

DNR (Do Not Resuscitate) — no CPR or defibrillation if cardiac/respiratory arrest occurs; does not preclude other aggressive care (ICU, pressors before arrest, intubation for respiratory failure not yet at arrest)

DNI (Do Not Intubate) — no endotracheal intubation; may still receive NIV (BiPAP), high-flow O₂, all other care

DNR/DNI combinations common; each must be addressed separately with the patient

Allow Natural Death (AND) — preferred terminology in many institutions; emphasizes shift in goals rather than withholding

Misconceptions to correct on exam:

Perioperative code status (required reconsideration):

Slow code / show code — ethically prohibited; performing partial or fake resuscitation violates honesty and informed consent

Structuring the GOC Conversation — Frameworks and Communication Logic

— Setting — private, sit down, minimize interruptions, include family/surrogate

— Perception — "What's your understanding?"

— Invitation — "How much detail would you like?"

— Knowledge — share information in small chunks, warning shot ("I have difficult news")

— Emotion — acknowledge with NURSE statements (Name, Understand, Respect, Support, Explore)

— Strategy/Summary — translate values into a plan

— Reframe — "Given the new information, we need to think differently"

— Expect emotion

— Map values — "What matters most to you now?"

— Align — reflect understanding

— Plan — recommend treatments matching values

Board pearl: When a Step 3 stem asks "what is the next best step" during a difficult family meeting and the family becomes tearful or angry, the answer is almost always to acknowledge the emotion first (NURSE statement) — not to repeat medical facts, not to order more tests, not to leave the room. Emotion-handling precedes information-giving.

Use a structured framework — exam questions reward recognition of these steps:

SPIKES (originally for bad news):

REMAP (for serious-illness conversations after bad news already delivered):

Ask-Tell-Ask — assess understanding, share concise info, check comprehension; repeat

"I wish… I worry… I wonder…" statements for navigating unrealistic hopes without confrontation

Make a recommendation — patients and families generally want guidance, not a menu. Example: "Given what you've told me matters most — being at home with family — I'd recommend we focus on comfort and avoid the ICU."

Avoid jargon ("pressors," "code"), false binaries ("do everything or nothing"), and prognostic vagueness ("anything could happen")

Document: who attended, what was discussed, what was decided, follow-up plan

Surrogate Decision-Making and Substituted Judgment

— Surrogate is asked: "Knowing your loved one, what would they choose in this situation?"

— Not "what do you want for them?" — that subtly shifts to surrogate's own preferences

— Anchored by prior conversations, written ADs, religious/cultural values, prior similar choices

— Used when patient never had capacity (e.g., lifelong intellectual disability, young children) or wishes are truly unknown

— Weighs benefits/burdens objectively

— Multiple children disagree → escalate to family meeting, social work, ethics consult; majority typically governs absent a designated proxy

— Estranged spouse vs devoted partner → legal spouse has priority unless legally separated/divorced or proxy named otherwise

— Surrogate's decision conflicts with prior written AD → AD generally controls; surrogate cannot override clear prior wishes

— Surrogate refuses to engage ("you decide, doc") → re-center on patient values, offer recommendation, do not abandon

Step 3 management: When a surrogate's decision appears to deviate from the patient's known wishes or best interest (e.g., insisting on aggressive care for a clearly dying patient who had written a living will refusing such care), the next step is an ethics consultation — not unilateral physician override and not capitulation. The ethics committee can mediate, reaffirm prior wishes, and, rarely, support transfer of decision-making authority via the courts.

When capacity is lost and no DPOA-HC exists, decisions follow the state surrogate hierarchy (see Chunk 3).

Substituted judgment (preferred standard):

Best interest standard:

Common surrogate dynamics tested on exams:

Surrogate burden is real — explicitly relieve guilt: "You're not deciding for them; you're helping us understand what they would want."

Document the surrogate's name, relationship, basis for substituted judgment.

Conducting the Family Meeting — A Step-by-Step CCS Approach

— Review chart, current clinical trajectory, prognosis (use validated tools when possible — APACHE, PPS, Seattle HF model)

— Align with the medical team — nursing, consultants, primary team should share one message

— Identify the decision-maker and key family

— Reserve a private space, sit at eye level, silence pagers

— Introductions, roles

— Confirm who's present and who's missing

— "What is your understanding of where things stand?"

— Warning shot, then headline: "The big picture is that despite everything we've done, [patient] is dying."

— Pause. Allow silence.

— Respond to emotion with NURSE before pivoting

— "Tell me about [patient] before this illness."

— "What did they value? What would they consider an unacceptable outcome?"

— "Did they ever talk about what they'd want in a situation like this?"

— Translate values into options: "Given what you've shared, I'd recommend focusing on comfort and stopping interventions that aren't helping..."

— Frame as shifting the goal, not "stopping care"

— Summarize decisions, document, confirm next steps (palliative care, hospice referral, code status order, planned reassessment)

CCS pearl: On a CCS family meeting case, the highest-yield orders are: palliative care consult, social work consult, chaplaincy (if culturally relevant), update code status order, and schedule follow-up family meeting in 24–48 hours. Document the meeting note with attendees, content, and plan — this is frequently rewarded in scoring rubrics tied to communication and care coordination.

Pre-meeting (15 min prep):

Opening (5 min):

Sharing information (10 min):

Exploring values (10–15 min):

Making a recommendation (5–10 min):

Closing:

Follow-up meetings often needed — major shifts rarely resolve in one sitting.

Special Populations — Elderly, Frail, and Cognitively Impaired Patients

— Most retain capacity for AD completion early in disease — act early

— Use simple language, visual aids, repeated sessions

— Involve future surrogate in the conversation so they hear values firsthand

— Recurrent infections, weight loss, dysphagia — these mark the terminal phase

— Evidence-based counseling points:

— Feeding tubes do NOT prolong life, prevent aspiration, or improve quality of life in advanced dementia; hand-feeding ("careful hand feeding") is preferred (AGS strong recommendation)

— Antibiotics for pneumonia provide modest survival benefit but may not improve comfort

— Hospitalization often causes harm (delirium, deconditioning, pressure injuries)

— Hospice eligibility: FAST 7c + medical complication (pneumonia, UTI, sepsis, pressure ulcer, weight loss >10%)

Board pearl: For a patient with advanced dementia and recurrent aspiration, the evidence-based recommendation is careful hand-feeding, not PEG tube placement. A PEG does not reduce aspiration, pressure ulcers, or mortality and may increase agitation, restraint use, and complications. Step 3 vignettes test this directly.

Older adults disproportionately face GOC decisions, yet only ~30% have completed an AD.

Approach to mild cognitive impairment / early dementia:

Advanced dementia (FAST stage 7):

Frailty assessment (Clinical Frailty Scale, Fried criteria) — frailty independently predicts poor outcomes from aggressive interventions; integrate into shared decision-making, especially pre-operatively.

Renal/hepatic impairment: dialysis initiation in frail elderly with multimorbidity often does not improve survival or QoL versus conservative kidney management — explicitly offer the non-dialysis pathway as a legitimate choice (KDIGO supports shared decision-making).

Polypharmacy review (deprescribing) is a tangible GOC alignment action — stop statins, bisphosphonates, tight glycemic agents when prognosis is limited.

Special Populations — Pediatrics, Pregnancy, and Cultural Considerations

— Parents are the default surrogate decision-makers, applying best interest standard

— Assent from children ~7+ should be sought; dissent taken seriously though not binding

— Adolescents: mature minor doctrine (varies by state) permits autonomous decisions for specific conditions (reproductive health, mental health, STI, substance use) without parental consent

— Emancipated minors (married, military, parent themselves, court order) make their own decisions

— Pediatric ADs exist: "Voicing My Choices" (adolescent version of Five Wishes)

— When parental decisions risk serious harm to the child (e.g., refusing life-saving transfusion for a child), state intervention/court order may override parental authority; emergency treatment proceeds without delay

— Many states have pregnancy exclusion clauses in living will statutes — directives may be suspended during pregnancy, especially if fetus is viable

— Counsel patients with reproductive potential about state-specific limitations

— Maternal-fetal conflicts require ethics consultation

— Jehovah's Witnesses — refuse blood products; capacitated adult refusal must be honored even if life-threatening; document refusal carefully, offer alternatives (cell salvage, EPO, IV iron)

— Some cultures prefer family-centered or non-disclosure models — ask the patient how they want information shared ("Some people want all the details; others prefer family handle it — what works for you?")

— Avoid stereotyping; individual preferences vary within any group

Key distinction: A capacitated pregnant patient retains the right to refuse treatment for herself in most contexts, but some state living will statutes automatically suspend previously executed directives once pregnancy is identified — particularly if the fetus is viable. Step 3 vignettes may probe whether the examinee knows to check state law and engage ethics rather than assume the AD controls unchanged.

Pediatrics:

Pregnancy:

Cultural and religious considerations:

Limited English proficiency — use certified medical interpreters, not family members, for GOC discussions; this is a patient safety standard.

Complications — When GOC Discussions Go Wrong

— Family-clinician conflict over prognosis or treatment direction

— Intra-family conflict — siblings disagree, estranged relatives appear late

— Patient-family conflict — patient wants comfort care, family demands aggressive treatment

— Clinician-clinician conflict — surgical team and medical team give mixed messages

— Inadequate or inconsistent prognostic communication

— Mistrust (often rooted in historical inequities; address explicitly)

— Guilt, grief, denial in family members

— Hope for miracle / religious framing

— Financial concerns (rare to discuss but real)

— Avoid the word "futile" — inflammatory and rarely accurate; use "not likely to achieve the goals we've discussed"

— Texas Advance Directives Act and similar state mechanisms allow institutional review when family demands non-beneficial care; multi-step due process required before withdrawal over objection

— AD on file but not visible in EHR at point of care

— Code status not updated at transitions

— Verbal agreements not converted to orders → defaults to full code

Step 3 management: When persistent family-clinician conflict over goals threatens patient safety or care delivery, the appropriate sequence is: (1) second family meeting with multidisciplinary team and consistent messaging; (2) palliative care consult; (3) ethics committee consultation; (4) second medical opinion if requested; (5) consider transfer of care to another willing physician/facility; (6) institutional/legal review only as last resort.

Conflict and breakdown patterns:

Drivers of conflict:

Moral distress in clinicians — providing treatments perceived as non-beneficial or harmful; mitigate via ethics consult, debriefing, palliative care partnership.

Non-beneficial / "futile" care:

Late or absent GOC conversations → ICU deaths against patient wishes, prolonged dying, family PTSD, clinician burnout.

Documentation failures:

When to Escalate — Palliative Care, Hospice, and Ethics Consultation

— Indicated alongside disease-directed therapy — not limited to end-of-life

— Triggers: serious illness with high symptom burden, complex GOC discussions, repeated admissions, prognostic uncertainty

— Evidence: early palliative care in metastatic NSCLC improves quality of life and may improve survival (Temel, NEJM 2010)

— Eligibility: prognosis ≤6 months if disease runs its usual course, certified by two physicians (attending + hospice medical director)

— Patient/surrogate must elect to forgo curative treatment for the terminal diagnosis (can still treat unrelated issues)

— Covers nursing, aide, social work, chaplaincy, medications related to diagnosis, DME, bereavement support

— Settings: home (most common), inpatient hospice unit, SNF, hospital (general inpatient level for symptom crisis)

— Patients can revoke hospice at any time and resume curative care

— Cancer: metastatic, declining PPS

— HF: NYHA IV, EF <20%, optimal therapy

— COPD: dyspnea at rest, FEV1 <30%, cor pulmonale, weight loss

— Dementia: FAST 7c + medical complication

— Renal: not on dialysis, CrCl <10 (or <15 with DM)

— Disagreement about decision-maker or decisions

— Possible non-beneficial care

— Questions of capacity or surrogate authority

— Concerns about coercion, abuse, or conscientious objection

CCS pearl: Hospice is not a place — it's a benefit. On exam vignettes, choose hospice referral when prognosis is ≤6 months and the patient/family has elected comfort-focused goals. Choose palliative care consult when symptoms are severe or GOC is complex but curative/disease-directed treatment continues. The two are complementary, not sequential.

Palliative care (specialty consult):

Hospice (Medicare benefit):

Common hospice eligibility criteria (LCDs):

Ethics consultation indications:

Spiritual care / chaplaincy — explicit part of whole-person care, especially at end of life

Distinguishing Related Concepts — Withholding, Withdrawing, and DDE

— Ethically and legally equivalent in US law (landmark: Cruzan, 1990; reinforced AMA and consensus statements)

— Psychologically harder for families and clinicians — anticipate this and normalize

— Time-limited trials ("let's try the ventilator for 72 hours; if no improvement, we'll reassess") leverage this equivalence

— Action with both intended good effect and foreseen bad effect is permissible if:

— Action itself is not wrong

— Intent is the good effect (symptom relief), not the harm (hastened death)

— Bad effect is not the means to the good

— Proportionality between benefits and burdens

— Applies to opioids/benzodiazepines for symptom relief at end of life — appropriate dosing for dyspnea/pain is ethical even if it may incidentally shorten life

Key distinction: Administering escalating morphine to relieve dyspnea in a dying patient (doctrine of double effect) is not euthanasia and is not assisted suicide — it is standard palliative care. Step 3 stems probing this distinction reward the answer choice describing titration to symptom relief without intent to cause death. Documentation should emphasize symptom indication and response.

Withholding treatment — never starting

Withdrawing treatment — stopping after initiation

Doctrine of double effect (DDE):

Palliative sedation — intentional reduction of consciousness for refractory symptoms in dying patients; ethically supported when standard symptom management fails; distinct from euthanasia

Voluntarily Stopping Eating and Drinking (VSED) — capacitated patient's choice to forgo food/fluids to hasten death; legal in all states; requires capacity and clinician support

Medical Aid in Dying (MAID) — physician prescribes lethal medication patient self-administers; legal in select US states (OR, WA, CA, CO, VT, NJ, NM, HI, ME, NY pending, others); strict eligibility (terminal illness, ≤6 month prognosis, capacity, two requests, waiting period)

Euthanasia (physician administers lethal medication) — illegal in all US states

Distinguishing GOC From Other Ethical Decision Frameworks

— GOC is broader, values-based, longitudinal

— Overlaps with GOC but SDM focuses on a discrete decision

Board pearl: A patient who lacks capacity in an emergency with no AD and no reachable surrogate is treated under the emergency exception (implied consent) — proceed with life-saving care. Step 3 stems may try to distract with "call ethics" or "wait for family"; the correct answer for true emergencies is treat now, document the rationale, and continue to seek the surrogate.

Informed consent — for specific interventions; requires disclosure of risks, benefits, alternatives, no-treatment option; capacity-dependent

Shared decision-making (SDM) — collaborative process for preference-sensitive decisions (e.g., PSA screening, AAA repair); often uses decision aids

Therapeutic privilege — withholding information from a patient if disclosure would cause serious harm; extremely narrow, rarely justified in modern practice; cannot be used to avoid difficult conversations

Conscientious objection — clinician declines to participate in a legal intervention (e.g., MAID, abortion) on moral grounds; must disclose, not abandon, and provide referral to a willing clinician; cannot apply in emergencies

Mandatory reporting — child/elder abuse, certain infectious diseases, gunshot wounds, impaired drivers (state-specific) — overrides confidentiality

Confidentiality exceptions — Tarasoff (duty to warn identifiable third party of credible threat), public health reporting, court order

Emergency exception to informed consent — life-threatening emergency, patient incapacitated, no surrogate available → treat under implied consent

Minors and confidentiality — adolescents have confidentiality protections for sensitive services (reproductive, mental health, SUD); break confidentiality for imminent harm

Gillick / mature minor — competence-based pediatric decision-making in some jurisdictions

Long-Term Plan — Operationalizing GOC Across the Care Continuum

— Scan AD into EHR with prominent flag on the chart banner

— Update code status order at every admission, ICU transfer, and pre-procedure

— Issue POLST/MOLST for seriously ill patients being discharged

— Provide patient with a copy; encourage them to share with family, PCP, specialists

— Annual Medicare Advance Care Planning visit (CPT 99497, +99498 add-on) — billable, often paired with AWV

— Revisit GOC at:

— New serious diagnosis

— Hospitalization or ICU stay

— Functional decline / falls

— Change in living situation (move to SNF, loss of caregiver)

— Loss of decision-making capacity (proactively)

— Confirm code status and POLST/MOLST in discharge paperwork

— Communicate decisions to PCP, SNF, home health, hospice

— Schedule follow-up within 7–14 days for goals reassessment and medication reconciliation

— Deprescribe medications inconsistent with goals (statins, intensive DM control, screening tests)

Step 3 management: At hospital discharge for a patient with serious illness, the high-yield order set is: (1) POLST/MOLST signed and copy to patient, (2) updated AD scanned into EHR, (3) communicate code status to PCP and SNF in transition summary, (4) palliative care or hospice follow-up scheduled, (5) caregiver education completed and documented. Missing any of these is the most common cause of unwanted readmissions and code-status reversals.

Documentation that travels:

Outpatient longitudinal practice (Step 3 favorite):

Discharge planning after a serious illness hospitalization:

Transitions of care are the highest-risk window for AD/code status misalignment — ED, hospital, SNF, home each may default differently if status isn't carried forward.

Caregiver support: respite care, caregiver counseling, bereavement resources

Monitoring, Quality Metrics, and System-Level Practice

— Reassess symptoms (use PHQ-9, ESAS, brief pain inventory) at each visit

— Reassess goals concordance — is care matching values?

— Track functional status (Karnofsky, PPS, ADLs/IADLs) — declines trigger re-conversation

— Monitor caregiver burden (Zarit Burden Interview)

— % of patients with documented AD

— % of seriously ill patients with documented GOC conversation

— Hospice length of stay (very short LOS <7 days suggests late referral)

— ICU deaths and ICU days in last 30 days of life

— In-hospital deaths for cancer patients (lower = better quality)

— Concordance between documented wishes and care delivered

— EHR triggers (Best Practice Alerts) for ACP at-risk patients

— Default order sets that prompt code-status documentation

— Trained facilitators (Respecting Choices, Serious Illness Conversation Program)

— Interdisciplinary palliative care teams

— Lower AD completion among Black, Hispanic, lower-income, and lower-literacy patients

— Drivers: mistrust (historical and ongoing), access to clinicians for sustained conversation, cultural variation in disclosure norms

— Mitigation: culturally adapted tools, community partnerships, trained facilitators reflecting community demographics

— Plain language at 6th-grade reading level

— Teach-back to confirm understanding

— Written summary for family

Board pearl: Hospice length of stay <7 days is a quality marker indicating late referral — patient and family didn't get full benefit. Hospice LOS of 2–3 months is generally considered indicative of timely referral. Exam questions probing "what could have been done differently" in a late-hospice vignette reward earlier GOC conversation at the inflection point of disease progression.

Patient-level monitoring:

Quality metrics for GOC / EOL care (used by CMS, NQF, value-based programs):

Health system levers:

Disparities in ACP completion and EOL care:

Counseling pearls:

Ethical, Legal, and Patient Safety Considerations

— Karen Ann Quinlan (1976) — established right to withdraw life-sustaining treatment via surrogate

— Nancy Cruzan (1990, SCOTUS) — competent adults have constitutional right to refuse treatment; states may require clear and convincing evidence of incapacitated patient's wishes

— Terri Schiavo (2005) — affirmed surrogate decision-making within state law; highlighted need for written ADs

— PSDA (Patient Self-Determination Act, 1991) — federal law requiring Medicare/Medicaid facilities to inform patients of AD rights at admission

— Capacitated patient refusing life-saving treatment (e.g., Jehovah's Witness refusing transfusion) — honor refusal; document capacity assessment and disclosure of risks

— Patient asks not to be told their diagnosis — honor preference, identify a designated information recipient

— Adolescent reproductive health — confidentiality protected; disclose only with imminent harm

— Code status defaults to full code if not documented — a hand-off failure can result in unwanted resuscitation

— Reconcile AD at every admission and transfer; this is a Joint Commission patient safety priority

— Suspected elder abuse during GOC visit → report to APS

— Capacitated patient with credible homicidal/suicidal intent → Tarasoff duty / hold

Step 3 management: A patient admitted from a SNF with a valid POLST specifying DNR/DNI arrests during transfer; EMS performs CPR because the POLST was not communicated. This is a transition-of-care safety failure — the correct system response is root cause analysis, interfacility communication protocol review, and EHR/printed POLST hand-off standardization. Always confirm and re-document code status at every care transition.

Foundational legal cases:

Informed consent edge cases:

Conscientious objection to participating in withdrawal of life support, MAID, or other interventions — clinician must disclose, refer, and not abandon; arrange transfer to a willing clinician

Transition-of-care safety:

Mandatory reporting intersections:

Documentation as patient safety: vague notes ("comfort measures, family agrees") fail at handoff — specify what is and isn't being done, by whom, and when reassessed

Never-event analogs: resuscitating a patient with a valid documented DNR is a serious safety event requiring root-cause analysis

High-Yield Associations and Rapid-Fire Clinical Facts

Board pearl: Two associations score disproportionately on Step 3 ethics items: (1) PEG feeding in advanced dementia → don't do it, recommend hand-feeding, and (2) perioperative DNR is reconsidered, not automatically suspended. If either appears in a stem, the answer choice aligning with patient-centered evidence-based practice is almost always correct.

PEG tubes in advanced dementia → do not prolong life, prevent aspiration, or heal pressure ulcers → careful hand-feeding preferred (AGS)

Early palliative care in metastatic NSCLC → improved QoL, mood, possibly survival (Temel)

Hospice eligibility = prognosis ≤6 months + foregoing curative treatment for terminal diagnosis

POLST = portable medical order, signed by clinician; living will = patient directive, not an order

DPOA-HC activates only upon loss of capacity

Substituted judgment preferred over best interest when prior wishes are knowable

Capacity is decision-specific and physician-assessed; competence is legal/court-determined

Refusal of treatment by capacitated adult must be honored, even if life-threatening

Emergency exception allows treatment without consent when incapacitated and no surrogate available

Doctrine of double effect permits symptom-relieving opioids even with foreseen risk of hastened death

Withholding = withdrawing ethically and legally

Time-limited trial = useful tool when prognosis uncertain

DNR ≠ do not treat; patients still receive antibiotics, surgery, ICU care if consistent with goals

Perioperative DNR must be discussed and either suspended, procedure-directed, or goal-directed — never automatically rescinded

Slow code / show code = ethically prohibited

Tube feeding via NG/PEG appropriate in stroke with potential for recovery, ALS (with informed choice), head/neck cancer; not in advanced dementia

Hospice LOS <7 days = late referral, lower quality

Medicare ACP visit = CPT 99497 (+99498), reimbursable annually

Cruzan = clear and convincing evidence standard; PSDA 1991 = informs patients of AD rights at admission

NURSE acronym for emotion: Name, Understand, Respect, Support, Explore

"I wish... I worry... I wonder..." = navigate unrealistic hopes empathically

Board Question Stem Patterns

— Answer: Recommend careful hand-feeding; explain PEG does not improve outcomes; consider hospice eligibility (FAST 7c + medical complication)

— Next step: Family meeting with palliative care consult, share prognosis, explore values, make recommendation; not "comply with full code"

— Action: Honor refusal; document capacity, disclosure of risks; offer alternatives (cell salvage, EPO, IV iron); do not seek court order

— Action: Pre-op GOC discussion to clarify status (full suspension vs procedure-directed vs goal-directed); document

— Action: Acknowledge emotion (NURSE), second family meeting, palliative care, then ethics if persistent

— Action: Provide confidentially (mature minor / reproductive health exception); do not disclose to parents

— Action: Explain doctrine of double effect; titrate opioid to relieve symptoms; appropriate use is standard of care

— Action: Treat under emergency exception (implied consent); document; continue seeking surrogate

— Action: Honor preference; identify designated information recipient; revisit periodically

— Stepwise: second family meeting → palliative care → ethics consultation → institutional process; do not unilaterally withdraw

Step 3 management: When in doubt on a GOC question, the right answer almost always involves (a) eliciting values before making decisions, (b) acknowledging emotion before delivering information, (c) making a recommendation rather than offering a menu, and (d) involving palliative care or ethics for complex conflict — not "transfer to another physician," "consult risk management," or "go to court."

Stem 1 — Advanced dementia + aspiration pneumonia + family asking about feeding tube

Stem 2 — Hospitalized patient with metastatic cancer, ECOG 4, family says "do everything"

Stem 3 — Capacitated Jehovah's Witness refuses transfusion for life-threatening bleed

Stem 4 — Surgical patient with DNR, surgeon assumes DNR suspended for OR

Stem 5 — ICU patient on ventilator, family conflicts over withdrawal

Stem 6 — Adolescent requesting confidential contraception

Stem 7 — Dying patient with refractory dyspnea, family worried morphine will "kill him"

Stem 8 — Patient with no AD, no family reachable, life-threatening emergency

Stem 9 — Patient asks not to be told prognosis

Stem 10 — Family demands non-beneficial ICU care for clearly dying patient

One-Line Recap

Goals-of-care discussions are longitudinal, values-driven conversations that translate a seriously ill patient's priorities into specific medical orders — operationalized through advance directives, surrogate decision-makers, and portable orders like POLST — and revisited at every major clinical inflection point.

Board pearl: On Step 3, the highest-scoring response to almost any GOC vignette pairs emotion-handling first (NURSE) with values-elicitation second ("what matters most to you?") and ends with a clinician recommendation translating those values into a concrete plan — not a menu of options, not a deferral to family or courts, and not a reflexive escalation of aggressive care. Honor capacity, document clearly, and revisit at every inflection point.

Process > paperwork: the conversation (eliciting values, sharing prognosis, making a recommendation, acknowledging emotion) drives outcomes; the AD/POLST/code status order are the artifacts that carry decisions across settings.

Capacity is decision-specific and clinician-assessed; surrogate hierarchy and substituted judgment apply only when capacity is lost — capacitated adults may refuse any treatment, even life-saving care.

Evidence-based defaults to remember: hand-feeding (not PEG) in advanced dementia; early palliative care alongside disease-directed therapy; hospice when prognosis ≤6 months and goals are comfort-focused; DNR ≠ do-not-treat; withholding = withdrawing; doctrine of double effect permits symptom relief at end of life.

System safety: code status must be reconfirmed at every transition of care; POLST/MOLST travel across settings; Medicare reimburses annual ACP visits (CPT 99497) — use them.