Withdrawal of Life-Sustaining Therapy

Quick Answer

Withdrawal of life-sustaining therapy (WOLST) is the deliberate discontinuation of interventions that sustain life when ongoing treatment is considered medically futile or inappropriate. It requires consensus between clinicians and family/substitute decision-makers, based on the patient's known wishes (autonomy) and best interests (beneficence, non-maleficence). Key distinctions include medical futility (physiological impossibility of benefit) versus inappropriate treatment (qualitative judgment about benefit-burden ratio). Ethical principles include double effect (medications intended to relieve suffering may hasten death), proportionality (treatment burden proportional to expected benefit), and respect for patient autonomy. Consensus decision-making through structured family meetings is preferred; unilateral decisions are ethically fraught and require formal ethics committee involvement. Legal frameworks vary by jurisdiction but generally recognize advance directives and substitute decision-maker authority. Communication must be compassionate, clear, and documented comprehensively.

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CICM Exam Focus

Written Exam High-Yield Topics:

• SUPPORT Study findings: communication deficits, prognosis accuracy, surrogate decision-making
• Medical futility vs inappropriate treatment: quantitative vs qualitative definitions
• Ethical principles: autonomy, beneficence, non-maleficence, justice, double effect, proportionality
• Advance directives: types, validity, limitations in ICU
• Substitute decision-makers: hierarchy, authority, conflict resolution
• Withdrawal process: consensus, ethics consultation, legal frameworks

Viva Voce Themes:

• Communication with families: breaking bad news, establishing goals of care
• Managing conflict: consensus vs unilateral decisions, ethics consultation
• Withdrawal procedures: terminal weaning vs extubation, symptom management
• Documentation: medical records, legal requirements
• Cultural considerations: Indigenous, Māori, CALD populations

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Key Points

• SUPPORT Study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) demonstrated significant communication deficits between clinicians, patients, and surrogates about prognosis and goals of care in ICU
• Medical futility: quantitative futility (physiological impossibility, below 1% probability of survival) vs qualitative futility (survival with unacceptable quality of life)
• Inappropriate treatment: current preferred term; emphasizes that some treatments may be medically possible but ethically unjustifiable due to disproportionate burden
• Ethical framework: autonomy (patient self-determination), beneficence (act in patient's best interest), non-maleficence (do no harm), justice (fair resource allocation)
• Double effect: principle that medications intended to relieve suffering may also hasten death; ethically permissible if primary intent is symptom relief
• Proportionality: treatment burden must be proportional to expected benefit; invasive interventions justified only when benefit outweighs harm
• Consensus decision-making: preferred approach involving multidisciplinary team, family/substitute decision-makers, ethics consultation
• Advance directives: living wills (treatment preferences) and durable powers of attorney (appointed decision-maker); validity varies by jurisdiction
• Substitute decision-makers: usually next of kin; authority varies by jurisdiction and presence of advance directives
• Withholding vs withdrawal: ethically and legally equivalent; clinicians may feel withdrawal is more emotionally difficult
• Terminal weaning: gradual reduction of ventilatory support with aggressive symptom management
• Terminal extubation: immediate removal of endotracheal tube; requires pre-extubation sedation and analgesia
• Documentation: comprehensive documentation of decision-making process, consensus, discussions, and withdrawal procedure

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Clinical Overview

Definitions and Concepts

Withdrawal of Life-Sustaining Therapy (WOLST):

• The deliberate discontinuation of interventions that sustain life
• Based on clinical judgment that continued treatment is futile or inappropriate
• Distinct from euthanasia and physician-assisted dying (intention to cause death vs intention to relieve suffering)
• Must be distinguished from brain death (legal death determined by neurological criteria)

Withholding vs Withdrawing:

• Withholding: decision not to initiate a life-sustaining intervention
• Withdrawing: decision to discontinue an ongoing life-sustaining intervention
• Ethically and legally equivalent: both are decisions not to provide treatment
• Clinicians and families often experience greater emotional difficulty with withdrawal compared to withholding

Medical Futility: Historically used but increasingly replaced by "inappropriate treatment"

Quantitative Futility:

• Physiological impossibility of achieving treatment goals
• Probability of success vanishingly small (often defined as below 1%)
• Example: CPR in septic shock with multi-organ failure where survival probability approaches zero
• More objective, less controversial

Qualitative Futility:

• Treatment may maintain life but resulting quality of life is unacceptable
• Highly subjective and culturally dependent
• Example: persistent vegetative state with no meaningful interaction
• More controversial: requires understanding of patient's values and preferences

Potentially Inappropriate Treatment:

• Current preferred terminology in professional guidelines
• Acknowledges that treatments may be medically possible but ethically unjustifiable
• Emphasizes proportionality between treatment burden and expected benefit
• Facilitates discussion rather than absolute declarations of futility

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Epidemiology

Patterns of Withdrawal in Intensive Care

Global Prevalence:

• Death in ICU occurs in up to 20-30% of all ICU admissions
• Approximately 90% of ICU deaths follow a decision to withhold or withdraw life-sustaining therapy
• Withdrawal is more common than withholding in most ICUs
• Significant geographic variation: higher withdrawal rates in North America and Europe compared to Asia and South America

Australian and New Zealand Data:

• ANZICS (Australian and New Zealand Intensive Care Society) studies show 70-80% of ICU deaths follow WOLST decisions
• End-of-life decisions account for approximately 20% of all ICU admissions
• Significant variation between hospitals, reflecting institutional culture and local practice patterns
• Withdrawal decisions typically made 3-7 days after ICU admission

Timing and Factors Influencing Withdrawal:

• Early withdrawal (below 48 hours): usually associated with catastrophic illness, severe brain injury, or pre-existing severe comorbidities
• Late withdrawal (greater than 7 days): often follows failed treatment attempts, recognition of poor prognosis, or complications
• Factors influencing withdrawal decisions:
  • Severity of illness and prognosis
  • Patient age and comorbidities
  • Functional status prior to admission
  • Patient's known preferences (advance directives)
  • Family understanding and acceptance of prognosis
  • Institutional culture and physician practice patterns
  • Legal and ethical frameworks

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Ethical Principles

Bioethical Framework

The Four Principles of Biomedical Ethics:

1. Autonomy:

• Patient's right to self-determination regarding medical treatment
• In ICU: patients usually lack capacity, requiring surrogate decision-making
• Substituted judgment standard: surrogate attempts to determine what the patient would have wanted
• Best interests standard: used when patient's wishes unknown; surrogate chooses what is in patient's best interests
• Advance directives: written expression of patient's autonomy for future incapacity

2. Beneficence:

• Duty to act in the patient's best interest
• In WOLST: may involve transitioning from curative intent to comfort-focused care
• Includes timely provision of palliative care and symptom management
• Requires honest communication about prognosis and treatment options

3. Non-Maleficence:

• Obligation to "do no harm"
• Core argument for WOLST when ongoing treatment prolongs dying process and causes unnecessary suffering
• Distinguishes between intended effects (symptom relief) and foreseen but unintended effects (hastening death)
• Requires weighing treatment burden against expected benefit

4. Justice:

• Fair distribution of limited healthcare resources
• Controversial in bedside decision-making but relevant at policy level
• Considers whether intensive resources should be used on patients who cannot benefit
• Access to ICU and end-of-life care should be equitable

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Additional Ethical Principles

Double Effect:

• Ethical principle originating from Thomas Aquinas
• Justifies actions that have both good and bad effects when:
  • The action itself is morally good or neutral
  • The bad effect is not intended (though foreseen)
  • The bad effect is not the means to achieve the good effect
  • The good effect outweighs the bad effect
• Applied to WOLST: high-dose opioids and sedatives intended to relieve suffering may also hasten death
• Key distinction: intent to relieve suffering vs intent to cause death
• Essential for ethical use of palliative medications at end of life

Proportionality:

• Treatment burden must be proportional to expected benefit
• Invasive interventions justified only when expected benefit outweighs harm
• Considerations: invasiveness, pain/discomfort, impact on dignity, probability of success
• Example: invasive mechanical ventilation justified for reversible respiratory failure, not for end-stage COPD with minimal chance of recovery

Respect for Dignity:

• Patients deserve to be treated with respect and maintained in comfort
• Includes privacy, maintaining bodily integrity, and respecting cultural practices
• Relevant to withdrawal procedures: ensure patient comfort, minimize distress

Integrity:

• Healthcare professionals must act consistent with professional standards and personal values
• May lead to conscientious objection to certain withdrawal decisions
• Institutions should provide mechanisms for transferring care when conflicts arise

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Ethical Frameworks for End-of-Life Decisions

Shared Decision-Making:

• Preferred model for end-of-life decisions in ICU
• Involves multidisciplinary team, patient (if able), family/substitute decision-makers
• Based on partnership and mutual respect
• Requires effective communication and time for deliberation

Best Interests Standard:

• Used when patient's wishes unknown
• Surrogate/clinician chooses treatment in patient's best interests
• Considers medical factors, values, and preferences if known
• Can be challenging when values conflict or prognosis uncertain

Substituted Judgment Standard:

• Gold standard when patient's prior preferences known
• Surrogate attempts to determine what the patient would have wanted
• Requires advance directive or prior discussions
• Most consistent with respect for autonomy

Consensus-Based Decision-Making:

• Aims for agreement between clinicians and family/substitute decision-makers
• May involve ethics consultation or multidisciplinary meetings
• Preferred over unilateral decisions
• May require compromise and time for reflection

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Decision-Making Frameworks

Consensus vs Unilateral Decision-Making

Consensus Decision-Making:

• Ideally, withdrawal decisions should be made by consensus between clinicians and family/substitute decision-makers
• Advantages:
  • Respects family's role and emotional needs
  • Reduces conflict and moral distress
  • Improves satisfaction with care
  • More ethically robust
• Disadvantages:
  • Time-consuming
  • May delay necessary decisions
  • Not always achievable
  • Family may have unrealistic expectations

Process for Achieving Consensus:

1. Initial family meeting to establish goals of care
2. Clear communication of prognosis (using evidence-based prognostic tools)
3. Understanding of patient's known preferences (advance directives, prior discussions)
4. Time for family to process information and discuss
5. Follow-up meetings to address questions and concerns
6. Involvement of multidisciplinary team (intensivist, nursing, social work, pastoral care)
7. Ethics consultation if ongoing disagreement or uncertainty

Unilateral Decision-Making:

• Clinician decides to withdraw without family consent
• Ethically fraught and legally risky
• May be considered in extreme circumstances:
  • Treatment is physiologically futile (quantitative futility)
  • Treatment causes suffering without benefit
  • Family demands treatment that is harmful or inappropriate
  • Emergency situations requiring immediate action
• Should be last resort after exhausting consensus-building efforts
• Requires formal ethics consultation and legal review

Ethics Committee Consultation:

• Recommended when:
  • Disagreement between clinicians and family
  • Uncertainty about appropriate action
  • Consideration of unilateral decision
  • Complex ethical issues
• Roles:
  • Facilitate dialogue
  • Provide ethical analysis
  • Make recommendations (not decisions)
  • Documentation and support

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Legal Frameworks

Australian Legal Framework

State and Territory Variations:

• End-of-life law in Australia is primarily state/territory-based
• No federal legislation covering advance care planning
• Different terminology and processes across jurisdictions

Advance Care Planning:

• Document expressing wishes for future medical care
• May include:
  • Advance directives (living wills)
  • Appointment of substitute decision-maker (medical enduring power of attorney)
  • Statement of values and preferences
• Legal recognition varies by jurisdiction
• Generally binding if validly executed and clearly applicable

Substitute Decision-Makers:

• Person appointed to make medical decisions when patient lacks capacity
• Terminology varies: medical enduring power of attorney, guardian, person responsible
• Hierarchy varies by jurisdiction:
  • Appointed guardian or attorney (highest priority)
  • Spouse or domestic partner
  • Adult children (sometimes with age or capacity requirements)
  • Parents (for young adults)
  • Siblings
  • Other relatives or close friends
• Authority varies by jurisdiction: may be limited to medical decisions or broader

Guardianship Tribunals:

• State and territory bodies that:
  • Review decisions about medical treatment
  • Appoint guardians for persons without capacity
  • Resolve disputes about treatment decisions
  • May authorize withdrawal of life-sustaining treatment in disputed cases
• Process: application, hearing, written decision
• Used when:
  • No substitute decision-maker available
  • Conflict between family members
  • Disagreement between family and clinicians
  • Unclear legal authority

Medical Treatment Legislation:

• Each jurisdiction has legislation covering:
  • When medical treatment can be given without consent (emergencies)
  • Rights of patients to refuse treatment
  • Process for making substitute decisions
  • Requirements for advance directives
• Examples:
  • Medical Treatment Act 1988 (Victoria)
  • Guardianship and Administration Act 1986 (Victoria)
  • Powers of Attorney Act 2003 (Queensland)
  • Guardianship and Administration Act 1990 (Western Australia)

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New Zealand Legal Framework

Protection of Personal and Property Rights Act 1988:

• Governs decision-making for persons lacking capacity
• Establishes Welfare Guardianship (medical and personal decisions)
• Process: Family Court application, medical assessment, legal representation
• Can authorize withdrawal of life-sustaining treatment

Advance Directives:

• Recognized under common law
• Not codified in statute but given effect by courts
• Must be voluntarily made, informed, and applicable to the situation

Substitute Decision-Makers:

• Welfare Guardian appointed by Family Court
• Attorney under Enduring Power of Attorney (medical decisions)
• Hierarchy: court-appointed guardian, attorney, family members (if no formal appointment)

Legal Cases:

• Re B (1988): established that withdrawal of life-sustaining treatment is not unlawful if in patient's best interests
• Public Trust v v (1988): confirmed that treatment can be withheld if futile

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Canadian Legal Framework (Comparison)

Carter v Canada (2015):

• Supreme Court decision recognizing constitutional right to physician-assisted dying
• Established criteria for medical assistance in dying (MAID)
• Distinct from withdrawal of treatment (which is already legal)

Advance Care Planning:

• Varies by province
• Generally recognized but not uniformly binding
• Some provinces have specific legislation (e.g., Ontario's Substitute Decisions Act)

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International Legal Context

European Convention on Human Rights:

• Article 2: Right to life (but includes right to refuse treatment)
• Article 3: Prohibition of inhuman or degrading treatment (requires adequate palliative care)
• Article 8: Right to respect for private and family life (includes autonomy in medical decisions)

United States:

• Cruzan v Director, Missouri Department of Health (1990): recognized right to refuse treatment
• Advance directives: Patient Self-Determination Act (1990) requires hospitals to inform patients of rights
• Varies significantly by state

United Kingdom:

• Mental Capacity Act 2005: governing decision-making for incapacitated adults
• Advance decisions: legally binding if meet requirements
• Court of Protection: makes decisions for persons lacking capacity

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Communication with Families

Principles of Communication

Communication Skills:

• Use plain language, avoid medical jargon
• Provide information in manageable chunks
• Check understanding frequently
• Allow silence for processing
• Acknowledge emotions
• Be honest about uncertainty
• Use metaphors and analogies carefully

Key Elements of End-of-Life Discussions:

1. Assess family's understanding of situation
2. Provide clear information about diagnosis and prognosis
3. Discuss patient's known values and preferences
4. Explain treatment options and likely outcomes
5. Address hopes and fears
6. Allow time for questions and discussion
7. Confirm agreement on plan of care
8. Document discussion and decisions

Breaking Bad News:

• SPIKES protocol:
  • "Setting: private environment, family together"
  • "Perception: assess what family knows"
  • "Invitation: ask how much information they want"
  • "Knowledge: deliver information gradually"
  • "Empathy: respond to emotions"
  • "Strategy/Summary: plan next steps"
• Adjust to cultural context: different norms for information sharing, decision-making

Prognostic Communication:

• Use numeric estimates when possible (e.g., "less than 5% chance of survival")
• Qualitative statements: "very unlikely to survive," "even if survives, severe disability likely"
• Avoid false hope: "there's always a chance"
• Acknowledge uncertainty: prognosis is not precise
• Use validated prognostic models when available (e.g., APACHE, SOFA for ICU patients)

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Family Meetings

Structure of Family Meeting:

1. Preparation:

   • Review medical facts, prognosis, treatment options
   • Involve multidisciplinary team
   • Anticipate questions and concerns
   • Ensure adequate time (30-60 minutes)

2. Opening:

   • Introduce all participants
   • State purpose clearly
   • Assess family's understanding
   • Ask what questions they have

3. Information sharing:

   • Provide medical update (clear, concise)
   • Discuss prognosis honestly
   • Explain treatment options
   • Describe likely outcomes with each option

4. Patient's values and preferences:

   • Ask about advance directives
   • Discuss patient's known wishes
   • Consider patient's quality of life values

5. Shared decision-making:

   • Identify goals of care
   • Discuss alignment with patient's values
   • Address concerns and disagreements
   • Aim for consensus

6. Closing:

   • Summarize agreed plan
   • Confirm understanding
   • Explain next steps
   • Arrange follow-up if needed

Managing Conflict:

• Acknowledge emotions: validate feelings
• Find common ground: shared interest in patient's well-being
• Explore concerns: understand family's perspective
• Take time for reflection: delay decisions if appropriate
• Involve neutral third party: ethics consultation, chaplaincy
• Document disagreements and reasons

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Withdrawal Procedures

Pre-Withdrawal Planning

Pre-Withdrawal Checklist:

• Confirm consensus on decision
• Review patient's known preferences
• Document decision-making process
• Inform all team members
• Prepare family for what to expect
• Arrange appropriate staffing
• Ensure adequate medications available
• Consider cultural or religious practices

Preparation of Environment:

• Private room if possible
• Comfortable seating for family
• Remove unnecessary equipment
• Ensure adequate lighting
• Create calm, peaceful atmosphere
• Allow family presence during withdrawal

Medication Preparation:

• Opioids: morphine, fentanyl, hydromorphone
• Benzodiazepines: midazolam, lorazepam
• Anticholinergics: hyoscine butylbromide for secretions
• Antiemetics: ondansetron, metoclopramide
• Have rescue medications ready

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Terminal Weaning

Indications:

• Ventilator-dependent patient with poor prognosis
• Desire for gradual withdrawal allowing family time
• Concern for respiratory distress with rapid extubation
• Need for careful titration of symptom relief

Procedure:

1. Ensure adequate sedation and analgesia before initiating wean
2. Gradually reduce ventilatory support:
   • Reduce FiO2 to 21-28%
   • Reduce pressure support or SIMV rate
   • Reduce PEEP gradually
   • Increase sedation if signs of distress
3. Monitor for respiratory distress:
   • Respiratory rate
   • Oxygen saturation
   • Heart rate
   • Sweating, agitation, anxiety
   • Use of accessory muscles
4. Titrate medications for comfort:
   • Opioids: titrate to effect, not respiratory rate
   • Benzodiazepines: for anxiety and agitation
   • Anti-secretions: for rattling respirations
5. Family presence: encourage family to be present during process
6. Time to death: variable, usually minutes to hours

Medication Regimens (Terminal Weaning):

• Morphine: starting 2-5 mg/hour IV infusion, titrate every 15-30 minutes
  • Bolus 2-5 mg for breakthrough symptoms
  • No ceiling dose for comfort
• Midazolam: starting 1-2 mg/hour IV infusion, titrate
  • Bolus 1-2 mg for agitation
• Hyoscine: 20-40 mg SC q4-6h prn secretions
• Antiemetics: ondansetron 4-8 mg IV q8h prn nausea

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Terminal Extubation

Indications:

• Patients requiring ongoing mechanical ventilation without prospect of recovery
• Desire for rapid withdrawal to minimize suffering
• Extubation without re-intubation as agreed plan

Procedure:

1. Ensure adequate premedication (15-30 minutes before extubation):
   • Opioid dose to relieve pain and dyspnea
   • Benzodiazepine for anxiety and agitation
   • Typically: morphine 5-10 mg IV + midazolam 2-5 mg IV
2. Suction endotracheal tube (patient deeply sedated)
3. Deflate cuff
4. Remove tube smoothly
5. Position patient comfortably (semi-recumbent or lateral)
6. Continue medications for comfort:
   • Opioids: titrate to effect
   • Benzodiazepines: as needed for agitation
   • Anti-secretions: for rattling respirations
7. Provide oxygen by nasal cannula or face mask if family desires
8. Monitor for respiratory distress and treat promptly

Medication Regimens (Terminal Extubation):

• Premedication (15-30 min before):
  • Morphine 5-10 mg IV (or equivalent fentanyl 25-50 mcg)
  • Midazolam 2-5 mg IV
• Post-extubation:
  • Morphine infusion 2-5 mg/hour, titrate to comfort
  • Midazolam infusion 1-2 mg/hour if needed
  • Bolus doses for breakthrough symptoms
  • Hyoscine 20-40 mg SC q4-6h for secretions
• Key principle: titrate to symptoms, not vital signs

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Withdrawal of Other Life-Sustaining Therapies

Vasopressors:

• Reduce gradually or stop depending on clinical situation
• Hypotension not problematic if patient comfortable
• Focus on symptoms rather than blood pressure
• May reduce as patient approaches death

Renal Replacement Therapy:

• Usually stopped when withdrawal decision made
• May continue short-term to allow family time
• Consider sedation if patient develops uremic symptoms

Artificial Nutrition and Hydration:

• Controversial area
• Generally stopped if consistent with withdrawal goals
• Consider: patient's prior wishes, likely benefits vs burdens, family views
• Artificial hydration may not relieve symptoms at end of life
• Ensure mouth care for comfort

Antibiotics and Other Treatments:

• Discontinue treatments directed at underlying condition
• Focus on comfort measures
• May continue treatments that provide symptom relief (e.g., bronchodilators for COPD)

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Symptom Management During Withdrawal

Dyspnea:

• Opioids: morphine 2.5-5 mg IV q15-30min prn, titrate to relief
• Benzodiazepines: midazolam 1-2 mg IV prn anxiety
• Cool air: fan or open window
• Positioning: upright or lateral
• Oxygen: if improves comfort (not for SpO2 target)

Pain:

• Opioids: titrate to relief, no ceiling dose for terminal care
• Benzodiazepines: adjunct for anxiety-related pain
• Non-pharmacological: massage, music, presence of family

Agitation and Anxiety:

• Benzodiazepines: midazolam 1-5 mg IV, titrate
• Haloperidol: 1-2 mg IV/IM q4-6h for agitation delirium
• Chlorpromazine: 12.5-25 mg IV/IM for agitation
• Ensure adequate analgesia first

Secretions (Death Rattle):

• Hyoscine butylbromide: 20-40 mg SC q4-6h
• Glycopyrrolate: 0.2-0.4 mg SC q4-6h
• Atropine: 0.4-0.6 mg SC q4-6h
• Repositioning: lateral position
• Suctioning: usually not helpful and may distress

Nausea and Vomiting:

• Ondansetron: 4-8 mg IV q8h
• Metoclopramide: 10 mg IV/IM q6-8h
• Haloperidol: 1-2 mg IV/IM q4-6h
• Levomepromazine: 6.25-12.5 mg PO/SC q8-12h

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Documentation

Medical Record Documentation

Essential Elements:

1. Decision-making process:

   • Clinical assessment and prognosis
   • Treatment options considered
   • Patient's known preferences (advance directives)
   • Substitute decision-maker involvement
   • Consensus achieved or ongoing disagreement

2. Family discussions:

   • Date, time, and participants
   • Information provided
   • Family's understanding and responses
   • Questions asked and answered
   • Agreement on plan

3. Decision:

   • Specific therapies to be withdrawn
   • Rationale for decision
   • Consensus status (unilateral or agreed)
   • Ethics consultation if involved

4. Withdrawal procedure:

   • Medications used and doses
   • Timing of withdrawal
   • Family presence
   • Patient response and symptoms managed

5. Legal considerations:

   • Advance directive referenced
   • Substitute decision-maker authority confirmed
   • Legal consultation if involved
   • Coroner notification (if required)

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Legal Documentation

Advance Directive Documentation:

• Locate and review advance directive
• Confirm validity (witnessing, compliance with state law)
• Determine applicability to current situation
• Document directive provisions relevant to current decision
• Document any conflict with current clinical situation

Substitute Decision-Maker Authority:

• Identify substitute decision-maker according to hierarchy
• Confirm legal authority (documents, court orders)
• Document substitute decision-maker's identity and relationship
• Record substitute decision-maker's decisions
• Document any limitations on authority

Coroner/Death Notification:

• Death following withdrawal of life-sustaining therapy usually not reportable to coroner
• Exception: unexpected deaths, deaths in custody, deaths resulting from medical negligence
• Document circumstances of death for coronial notification if required

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Cultural Considerations

Indigenous Australians (Aboriginal and Torres Strait Islander)

Cultural Values and Beliefs:

• Importance of community and family in decision-making
• Concept of "sorry business" around death and dying
• Preference for "passing away" on country (traditional lands)
• Spiritual beliefs about death and afterlife
• Traditional healing practices and bush medicine

Communication Considerations:

• Use of Aboriginal Health Workers (AHWs) and Aboriginal Liaison Officers (ALOs)
• Yarning: culturally appropriate storytelling and communication
• Family group meetings: inclusive of extended family
• Avoid direct questions about death: discuss "transition," "going to sleep"
• Allow time for family discussion and consultation

End-of-Life Practices:

• Family presence at bedside: multiple family members
• Smoking ceremonies and traditional rituals
• Cultural restrictions: some family members cannot see body
• Avoid touching head (sacred)
• Return to country for burial or ceremony

Decision-Making:

• Consensus among family and community elders
• May not accept individualistic Western concept of advance directives
• Substitute decision-making by family elders
• May resist withdrawal decisions due to trust issues with healthcare system

Health Disparities:

• Lower life expectancy: 8-10 years below non-Indigenous Australians
• Higher ICU admission rates for preventable conditions
• Limited access to palliative care services in remote communities
• Historical trauma affecting trust in healthcare institutions

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Māori (New Zealand)

Cultural Values (Tikanga):

• Whānau (family) central to decision-making
• Tapu (sacred) nature of body after death
• Manaakitanga (hospitality and care) important in healthcare
• Tikanga death: specific cultural protocols around death and dying

Decision-Making:

• Whānau involvement essential
• Extended family decision-making rather than individual
• Kaumātua (elders) have important role
• May involve hui (formal meeting) for significant decisions

Communication:

• Use of Māori Health Workers
• Whakawhanaungatanga (building relationships)
• May use Māori language and concepts
• Direct discussion of death may be culturally inappropriate

End-of-Life Practices:

• Karakia (prayers) and waiata (songs)
• Tangihanga (funeral ritual): extended mourning period
• Return to marae (traditional meeting house)
• Avoidance of touching body after death

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Culturally and Linguistically Diverse (CALD) Populations

Language Considerations:

• Use professional interpreters (not family members)
• Allow extra time for translation and discussion
• Verify understanding through back-translation
• Provide written information in appropriate language

Cultural Differences:

• Varying approaches to disclosure of prognosis (protective nondisclosure in some cultures)
• Different family structures and decision-making patterns
• Religious beliefs influencing treatment choices
• Varying attitudes to advance care planning

Religious Considerations:

• Catholicism: emphasis on sanctity of life but accepts withholding futile treatment
• Islam: emphasis on relieving suffering, withdrawal may be acceptable
• Judaism: sanctity of life paramount but accepts withholding futile treatment
• Hinduism: emphasis on natural death, may accept withdrawal
• Buddhism: emphasis on relieving suffering, withdrawal may be acceptable
• Provide chaplaincy or religious leader consultation as needed

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Remote and Rural Considerations

Challenges in Remote Settings

Limited Resources:

• Few ICU beds and limited specialist expertise
• Limited access to ethics consultation
• Limited access to palliative care services
• Transfer to tertiary center may be required for complex decisions

Communication:

• Telemedicine consultations for ethics and specialty input
• Family may be geographically dispersed
• Time pressure for decisions if transfer required

Cultural Factors:

• Remote Indigenous communities: strong cultural practices
• Limited local cultural support services
• Higher rates of chronic disease and premature death

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Royal Flying Doctor Service (RFDS) Retrieval

Transfer Considerations:

• Critically ill patients requiring withdrawal may be retrieved to larger center for family access
• Withdrawal decisions may need to be made during transfer
• Communication with family by telephone/videoconference
• RFDS staff trained in end-of-life care and communication

Protocol for Retrieval:

• Clear communication about goals of care before retrieval
• Consider appropriateness of retrieval for patients with poor prognosis
• If withdrawal decision made: may retrieve to allow family presence and comfort measures
• RFDS contact: 1800 625 800

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Quality Improvement and Audit

Monitoring Withdrawal Practices

Key Quality Indicators:

1. Percentage of ICU deaths following WOLST decisions
2. Time from admission to withdrawal decision
3. Family satisfaction with communication and decision-making
4. Documentation completeness
5. Adherence to institutional protocols
6. Ethics consultation rate
7. Conflict frequency and resolution

Audit Recommendations:

• Regular chart audit of withdrawal decisions
• Family satisfaction surveys
• Staff feedback on moral distress
• Benchmarking with other ICUs
• Regular review and update of protocols

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Evidence-Based Practice

SUPPORT Study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments)

Study Design:

• Multicenter study in five US teaching hospitals
• Examined decision-making and outcomes for seriously ill hospitalized patients
• Followed 4,301 patients and 2,898 surrogate decision-makers

Key Findings:

1. Communication deficits:

   • Only 41% of physicians knew patients' preferences for CPR
   • Only 46% of physicians discussed prognosis with patients
   • Surrogates often inaccurate about patients' preferences

2. Prognosis accuracy:

   • Physicians often overestimated prognosis
   • Patients and families often inaccurate about likely outcomes

3. Decision-making:

   • Advance directives often not available or followed
   • Many patients received aggressive care inconsistent with their preferences

4. Outcomes:

   • High rates of pain and suffering at end of life
   • Family dissatisfaction with communication and decision-making

Impact:

• Stimulated widespread changes in end-of-life communication
• Emphasized need for early goals-of-care discussions
• Led to development of communication training programs
• Highlighted importance of advance care planning

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Guidelines and Consensus Statements

ATS/AACN/ACCP/ESICM/SCCM Policy Statement (2015):

• Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units
• Provides framework for addressing disputes about inappropriate treatment
• Recommends structured approach: communication, consultation, ethics review
• Emphasizes process-based resolution rather than unilateral decisions

ANZICS Statement on Death and Organ Donation in ICU:

• Provides guidance on end-of-life care and organ donation
• Emphasizes ethical decision-making and family communication
• Recommends early involvement of specialist palliative care

Australian Commission on Safety and Quality in Health Care:

• National Consensus Statement: Essential elements for safe and high-quality end-of-life care
• Provides standards for end-of-life care across all healthcare settings

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Systematic Reviews and Meta-Analyses

End-of-Life Communication:

• Structured communication protocols improve family satisfaction
• Training in communication skills improves clinician confidence and effectiveness
• Family presence at withdrawal improves satisfaction and reduces distress

Withdrawal Practices:

• Terminal extubation vs terminal weaning: similar outcomes, both acceptable
• Opioid doses at withdrawal have increased over time (reflecting better symptom relief)
• No evidence that palliative medications hasten death significantly

Ethics Consultation:

• Ethics consultation reduces conflict and moral distress
• Improves satisfaction with decision-making
• Does not significantly increase time to decision

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Special Populations

Paediatric Patients

Special Considerations:

• Parental consent required for treatment decisions
• Withdrawal decisions more emotionally difficult for parents and clinicians
• Need for age-appropriate communication with children when possible
• Consideration of child's assent when developmentally appropriate

Withdrawal in Neonatal ICU:

• Based on prognosis and quality of life assessment
• Guidelines vary by jurisdiction
• Emphasis on avoiding futile interventions
• Parental involvement central to decision-making

Ethical Principles:

• Best interests of child paramount
• Consideration of harm from ongoing treatment
• Respect for parental authority balanced against child's welfare
• May involve child protection authorities if parents demanding harmful treatment

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Patients with Dementia

Challenges:

• Prior capacity may have been compromised when advance directive created
• Progressive cognitive decline makes substituted judgment difficult
• Family may disagree about patient's prior wishes
• Need to balance prior preferences with current quality of life

Considerations:

• Advance directives made when patient had capacity given great weight
• Treatment decisions based on current stage and prognosis
• Focus on comfort and dignity rather than prolonging life
• Consider burden of interventions in context of dementia

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Patients with Psychiatric Illness

Challenges:

• Prior psychiatric illness may affect judgment about advance directives
• Current depression or psychosis may affect capacity
• Risk of self-harm vs autonomous decision-making
• May require psychiatric assessment

Ethical Considerations:

• Respect for autonomy while protecting vulnerable patients
• May require capacity assessment
• Mental health tribunal involvement in some jurisdictions
• Distinction between depression and rational end-of-life preferences

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Medicolegal Considerations

Risk Management

Key Risks:

• Family complaints or legal action following withdrawal
• Allegations of negligence or hastening death
• Failure to follow advance directives
• Inadequate documentation
• Poor communication leading to conflict

Risk Reduction Strategies:

• Comprehensive documentation of decision-making process
• Clear communication with family and documented agreements
• Adherence to institutional protocols and legal frameworks
• Ethics consultation for complex cases
• Regular training in end-of-life communication
• Review and audit of practices

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Coroner and Forensic Considerations

When Coroner Involvement Required:

• Deaths following medical procedures with unexpected complications
• Deaths in custody or police custody
• Deaths resulting from possible negligence
• Deaths where cause unclear or unexpected

Documentation for Coroner:

• Clear and comprehensive clinical notes
• Copies of advance directives
• Documentation of decision-making process
• Medication records
• Incident reports if complications occurred

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SAQ Practice Questions

SAQ 1

Question:

A 68-year-old male was admitted to ICU 5 days ago with community-acquired pneumonia and septic shock. Despite appropriate antibiotics, vasopressors, and mechanical ventilation, he has developed multi-organ failure with persistent shock, worsening respiratory function, and acute kidney injury requiring CRRT. His SOFA score remains elevated at 15, and lactate is persistently elevated at 6 mmol/L. His wife of 45 years tells you that "he always said he wouldn't want to be kept alive on machines." He has no advance directive.

(a) Discuss the ethical principles involved in decisions about withdrawal of life-sustaining therapy. [4 marks]

(b) How would you approach a discussion with his wife about withdrawal of life-sustaining therapy? [4 marks]

(c) His adult children arrive from interstate and strongly demand that "everything possible" be done to keep him alive. Outline your approach to resolving this disagreement. [4 marks]

(d) The hospital legal advisor recommends obtaining a court order. Discuss the circumstances under which this might be appropriate. [3 marks]

Model Answer:

(a) Ethical principles involved in WOLST decisions: [4 marks]

• Autonomy: Patient's prior stated preference ("wouldn't want to be kept alive on machines") should guide decision [1 mark]
• Beneficence: Acting in patient's best interest; may involve transitioning to comfort care when prognosis poor [1 mark]
• Non-maleficence: Avoiding harm; ongoing treatment may cause suffering without benefit [1 mark]
• Justice: Fair resource allocation; ICU resources may be more appropriately used elsewhere [1 mark]

(b) Approach to discussion with wife: [4 marks]

• Arrange formal family meeting in private setting [1 mark]
• Provide clear, honest information about prognosis (SOFA 15, persistent lactate elevation indicates very poor prognosis) [1 mark]
• Explore wife's understanding of patient's prior statements and values [1 mark]
• Discuss options: continuation of aggressive care vs withdrawal with comfort focus; respect autonomy expressed by patient's prior wishes [1 mark]
• Allow time for questions and emotional processing; offer follow-up meeting

(c) Approach to resolving disagreement: [4 marks]

• Convene family meeting with wife and children, with multidisciplinary team present [1 mark]
• Listen to children's concerns and explore their understanding of prognosis and father's values [1 mark]
• Share wife's information about patient's prior stated preferences; discuss patient's likely views based on wife's knowledge of him [1 mark]
• Emphasize that decision should reflect patient's values, not family desires; facilitate consensus if possible [1 mark]
• If consensus impossible: involve ethics consultation; consider substitute decision-maker according to jurisdiction; unilateral decision only as last resort

(d) Circumstances for court order: [3 marks]

• Disagreement between family members with no clear substitute decision-maker [1 mark]
• Conflict between family and clinicians about appropriate care [1 mark]
• Uncertainty about legal authority or validity of advance directive [1 mark]
• Court of last resort after ethics consultation and attempts at consensus

Total: 15 marks

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SAQ 2

Question:

A 42-year-old female with metastatic breast cancer was admitted to ICU with respiratory failure secondary to pneumonia and pleural effusions. She is mechanically ventilated but remains hypoxic despite high PEEP and FiO2 0.8. Her oncologist informs you that her cancer has progressed despite multiple lines of chemotherapy and prognosis is weeks to months at best. She is currently sedated with midazolam infusion but intermittently arousable. Her husband says she has discussed her wishes with him but she is too tired to talk.

(a) How would you assess her capacity to make treatment decisions? [3 marks]

(b) Describe the process of substituted judgment and when it applies. [3 marks]

(c) The medical team agrees that continued ventilation is futile. The husband agrees but is concerned about "hurting her" by withdrawing ventilation. Explain how you would address his concerns. [4 marks]

(d) Outline the management of terminal extubation, including premedication and ongoing symptom management. [5 marks]

Model Answer:

(a) Capacity assessment: [3 marks]

• Assess ability to: understand information, retain information, weigh information, communicate decision [1 mark]
• Reduce sedation (allow midazolam to wear off or pause infusion) to assess if patient can engage [1 mark]
• If patient too hypoxic or medically unstable, capacity assessment may be deferred; proceed with substitute decision-making [1 mark]

(b) Substituted judgment process: [3 marks]

• Used when patient lacks capacity and no advance directive [1 mark]
• Substitute decision-maker attempts to determine what patient would have wanted, not what substitute wants [1 mark]
• Based on knowledge of patient's values, prior statements, beliefs, and preferences [1 mark]
• Distinct from best interests standard (used when patient's wishes unknown)

(c) Addressing husband's concerns: [4 marks]

• Acknowledge and validate his concerns; common fear that withdrawal will cause suffering [1 mark]
• Explain that withdrawal is not "ending life" but allowing natural death; underlying disease process is causing death, not withdrawal [1 mark]
• Describe medications that will be used to ensure comfort: opioids for dyspnea, benzodiazepines for anxiety [1 mark]
• Emphasize goal is relief of suffering, not hastening death (double effect principle) [1 mark]
• Offer for him to be present during procedure; involve pastoral care or chaplain if desired

(d) Terminal extubation management: [5 marks]

• Premedication (15-30 min before): Morphine 5-10 mg IV AND Midazolam 2-5 mg IV for adequate sedation/analgesia [1 mark]
• Procedure: Suction endotracheal tube (patient deeply sedated), deflate cuff, remove tube smoothly, position patient comfortably [1 mark]
• Post-extubation medications:
  • Morphine infusion 2-5 mg/hour, titrate to comfort (not respiratory rate) [1 mark]
  • Midazolam infusion 1-2 mg/hour for agitation/anxiety
  • Bolus doses for breakthrough symptoms
  • Hyoscine butylbromide 20-40 mg SC q4-6h for secretions if needed [1 mark]
• Monitoring and support: Family presence, continuous monitoring, provide oxygen if family desires, focus on comfort rather than vital signs [1 mark]

Total: 15 marks

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Viva Voce Scenarios

Viva 1: End-of-Life Decision-Making in ICU

Candidate Prompt:

"A 72-year-old male was admitted to ICU 4 days ago with acute ischemic stroke and subsequent aspiration pneumonia. He had a large right MCA infarct with significant cerebral edema. Despite maximal medical therapy including hypertonic saline, he has developed refractory intracranial hypertension and now has signs of brainstem herniation. His pupils are fixed and dilated, and he has extensor posturing to pain. He has no advance directive. His wife of 50 years is at the bedside, and their three adult children are expected to arrive in 2 hours. The ICU team believes that ongoing aggressive treatment is futile."

Examiner Questions:

1. What is your immediate assessment and management priorities?

2. How would you approach the discussion with the wife about the patient's prognosis and withdrawal of life-sustaining therapy?

3. The wife insists that "everything possible" must be done. The children arrive and disagree with the wife. They agree that their father would not want aggressive care based on conversations they've had. How would you manage this disagreement?

4. Describe the process of terminal extubation, including premedication and ongoing symptom management.

5. What are the legal considerations in your state/territory for making withdrawal decisions without family consensus?

Model Answers:

Question 1: Immediate assessment and management

• Immediate neurological assessment: GCS, pupillary response, brainstem reflexes [1 mark]
• Confirm herniation signs: fixed/dilated pupils, posturing, Cushing's triad [1 mark]
• Imaging: urgent CT head to confirm brain edema/herniation [1 mark]
• Discuss prognosis with treating team: survival extremely unlikely, any survival likely with severe disability [1 mark]
• Review treatment options: continued aggressive care vs withdrawal with comfort focus [1 mark]
• Prepare for family discussion: gather information, anticipate questions [0.5 marks]
• Consider prognosis tools: may use clinical judgment; no validated tool for this specific scenario [0.5 marks]

Question 2: Discussion with wife

• Arrange private meeting with wife in quiet environment [1 mark]
• Assess wife's understanding of current situation and prognosis [1 mark]
• Provide clear information: brainstem herniation, prognosis (extremely poor chance of meaningful survival) [1 mark]
• Ask about patient's prior expressed wishes and values; does wife know what he would want? [1 mark]
• Discuss options: continued aggressive care vs withdrawal; explain what withdrawal involves [1 mark]
• Allow time for questions and emotional processing [0.5 marks]
• Arrange follow-up meeting when children arrive [0.5 marks]

Question 3: Managing disagreement

• Convene family meeting with wife and children present [1 mark]
• Facilitate discussion: allow each person to express views and concerns [1 mark]
• Focus on patient's values and prior statements; ask children about conversations with father [1 mark]
• Explore wife's perspective: her understanding of patient's wishes, her concerns [1 mark]
• Aim for consensus: agreement based on patient's likely wishes [1 mark]
• If consensus impossible:
  • Involve ethics consultation [1 mark]
  • Identify substitute decision-maker according to jurisdiction (usually spouse) [0.5 marks]
  • Consider unilateral decision only as last resort after formal ethics review [0.5 marks]

Question 4: Terminal extubation

• Premedication (15-30 min before):
  • "Ensure deep sedation/analgesia: Morphine 5-10 mg IV + Midazolam 2-5 mg IV [1 mark]"
  • "Confirm adequate effect: no response to painful stimuli [0.5 marks]"
• Procedure:
  • Suction endotracheal tube [0.5 marks]
  • Deflate cuff [0.5 marks]
  • Remove tube smoothly [0.5 marks]
  • Position patient semi-recumbent or lateral [0.5 marks]
• Post-extubation management:
  • "Morphine infusion: 2-5 mg/hour, titrate to comfort [1 mark]"
  • "Midazolam infusion: 1-2 mg/hour if needed for agitation [0.5 marks]"
  • Bolus doses for breakthrough symptoms [0.5 marks]
  • Hyoscine 20-40 mg SC q4-6h for secretions if needed [0.5 marks]
  • Family presence; focus on comfort, not vital signs [1 mark]

Question 5: Legal considerations

• Advance directives: none in this case [0.5 marks]
• Substitute decision-maker: varies by jurisdiction but usually spouse first in hierarchy [1 mark]
• Guardianship tribunal: may be involved if dispute between family members [1 mark]
• Unilateral decision: possible but ethically fraught; requires ethics consultation and documentation [1 mark]
• Documentation: comprehensive documentation of decision-making process, disagreements, and rationale [1 mark]
• Coroner notification: not required for expected death following withdrawal [0.5 marks]

Total: 20 marks

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Viva 2: Indigenous Patient with End-of-Life Decision

Candidate Prompt:

"A 58-year-old Aboriginal woman from a remote community in the Northern Territory was admitted to the tertiary hospital ICU 7 days ago with severe community-acquired pneumonia and septic shock. She has multiple comorbidities including end-stage renal failure on dialysis, type 2 diabetes, and ischemic heart disease. Despite maximal therapy, she has developed multi-organ failure with persistent hypotension despite high-dose vasopressors, worsening respiratory failure, and refractory metabolic acidosis. Her prognosis is extremely poor. Her husband is at the bedside, and her extended family including her sister (who is also the community Elder) and adult children have arrived from the remote community. They have requested an Aboriginal Health Worker to be present. The treating team believes withdrawal of life-sustaining therapy is appropriate."

Examiner Questions:

1. How would you approach the end-of-life discussion with this family, considering cultural factors?

2. The family initially resists withdrawal, stating that "she needs to go back to country to die properly." How would you respond to this request?

3. The husband appears withdrawn and says little during discussions. The Elder sister does most of the talking. How would you understand and work with this family dynamic?

4. The team agrees to withdrawal. Outline the withdrawal procedure, including specific cultural considerations.

5. Following withdrawal, the family requests that the body be transported back to the remote community for burial. What are the logistical and legal considerations?

Model Answers:

Question 1: Approach to end-of-life discussion

• Ensure Aboriginal Health Worker (AHW) or Aboriginal Liaison Officer (ALO) present for all discussions [1 mark]
• Use culturally appropriate communication: "yarning" style, storytelling, avoid direct confrontation [1 mark]
• Include extended family: husband, children, Elder sister; allow family group decision-making [1 mark]
• Acknowledge Elder sister's role as community Elder; show respect for her position [1 mark]
• Avoid direct discussion of "death" initially; use terms like "very sick," "not getting better" [1 mark]
• Provide information about prognosis gradually; allow time for family processing and discussion [1 mark]
• Ask about patient's values and wishes through family knowledge of her [0.5 marks]
• Respect family's need to consult with community; may require time for decision [0.5 marks]

Question 2: Response to request for return to country

• Acknowledge the cultural importance of dying on country [1 mark]
• Explain medical reality: patient is too unstable for transport to remote community safely [1 mark]
• Discuss alternative: bring family to hospital for extended period before withdrawal [1 mark]
• Offer to facilitate cultural practices in hospital: smoking ceremony, family presence, traditional items [1 mark]
• If possible, consider transfer to regional hospital closer to community if patient becomes stable enough [1 mark]
• Work with AHW/ALO to understand and mediate cultural expectations [1 mark]

Question 3: Family dynamics

• Understand that husband may follow cultural protocols: deferring to Elder sister, not speaking in mixed groups [1 mark]
• Husband's silence may indicate respect for cultural protocols, not lack of understanding or involvement [1 mark]
• Elder sister as community Elder holds decision-making authority in cultural context [1 mark]
• Direct questions to Elder sister with respect; acknowledge her leadership role [1 mark]
• But also engage husband privately if appropriate; ensure his understanding and consent [1 mark]
• Use AHW/ALO to help navigate cultural protocols and family roles [1 mark]

Question 4: Withdrawal with cultural considerations

• Premedication: same medical protocol (morphine + midazolam) but explain clearly to family [1 mark]
• Timing: coordinate with family; allow cultural preparation time (may need hours or days) [1 mark]
• Presence: allow extended family to be present during withdrawal [1 mark]
• Cultural practices:
  • Allow smoking ceremony or other rituals before or during withdrawal [1 mark]
  • Permit traditional items or objects with patient [0.5 marks]
  • Respect family wishes about who may touch body after death (may be restricted) [0.5 marks]
  • Consider cultural protocols around head touching (avoid) [0.5 marks]
• After death:
  • Allow family extended time with body [0.5 marks]
  • Facilitate cultural practices if possible within hospital [0.5 marks]

Question 5: Logistical and legal considerations for return to community

• Logistical considerations:
  • Contact RFDS (1800 625 800) for transport of body [1 mark]
  • Coordinate with community clinic and family regarding arrival time [1 mark]
  • "Ensure appropriate paperwork: death certificate, medical certificate [1 mark]"
  • Consider refrigeration facilities if transport delayed [0.5 marks]
• Legal considerations:
  • "Coroner notification may be required: depends on circumstances of death, jurisdiction [1 mark]"
  • Medical examiner may need to approve release of body [0.5 marks]
  • "Documentation required: cause of death, circumstances of withdrawal [0.5 marks]"
  • Consider if any unexpected complications during withdrawal that would require coronial investigation [0.5 marks]
• Cultural considerations:
  • "Time constraints: some cultural practices require burial within specific timeframe [1 mark]"
  • Coordinate with community about funeral arrangements [0.5 marks]
  • Ensure AHW/ALO involved in communication with community [0.5 marks]

Total: 20 marks

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References

Epidemiology and Practice Patterns

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SUPPORT Study

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13. Teno J, Lynn J, Wenger N, et al. Do advance directives affect resuscitation decisions and the use of resources for seriously ill hospitalized patients? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Clin Ethics. 1997;8(1):36-42. PMID: 9067562

14. Danis M, Patrick DL, Southerland LI, Green ML. Patients' and families' preferences for medical intensive care. JAMA. 1988;260(6):797-802. PMID: 3396791

15. Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA. 1998;279(21):1709-1714. PMID: 9624022

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Ethical Principles

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21. Cherny NI, Coyle N, Foley KM. Suffering in the advanced cancer patient: a definition and taxonomy. J Palliat Care. 1994;10(2):57-70. PMID: 8037586

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23. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College of Critical Care Medicine. Crit Care Med. 2008;36(3):953-963. PMID: 18431288

Medical Futility and Inappropriate Treatment

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26. Helft PR, Siegler M, Lantos J. The rise and fall of the futility movement. N Engl J Med. 2000;343(4):293-296. PMID: 10922423

27. Lantos JD, Berger AC, Zucker AR. The futility of the "futility" argument. Arch Pediatr Adolesc Med. 1993;147(10):1062-1064. PMID: 8213661

28. Burns JP, Truog RD. Futility: a concept in evolution. Chest. 2007;131(6):1884-1890. PMID: 17565017

29. Wicclair MR. Inappropriate treatment: a philosophical analysis. J Med Philos. 2001;26(5):511-533. PMID: 11570233

30. Mohan D, Siddique M, White DB, et al. Potential futility and conflict in the ICU: a comparison of physician and nurse perspectives. Am J Respir Crit Care Med. 2013;188(5):572-578. PMID: 23888016

Communication and Family Meetings

31. White DB, Braddock CH 3rd, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch Intern Med. 2009;169(20):1921-1930. PMID: 19884567

32. White DB, Malvar G, Karr J, et al. Expanding the paradigm of the physician's role in surrogate decision making at the end of life. Arch Intern Med. 2010;170(19):1723-1729. PMID: 20876403

33. McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32(7):1484-1488. PMID: 15218664

34. Curtis JR, Patrick DL, Engelberg RA, et al. A measure of the quality of dying and death. Initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002;24(1):17-31. PMID: 12142697

35. Stapleton RD, Engelberg RA, Wenrich MD, et al. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 2006;34(6):1674-1681. PMID: 16625162

36. Azoulay E, Pochard F, Chevret S, et al. Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: a multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med. 2002;165(4):438-442. PMID: 11839819

37. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469-478. PMID: 17267906

Withdrawal Procedures and Symptom Management

38. Campbell ML, Bizek KS, Thill BH. Patient responses during rapid terminal weaning from mechanical ventilation: a prospective study. Crit Care Med. 1999;27(1):73-77. PMID: 9914940

39. Cook D, Rocker G, Marshall J, et al. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med. 2003;349(12):1123-1132. PMID: 13679527

40. Truog RD, Burns JP, Mitchell C, et al. Pharmacologic paralysis and withdrawal of mechanical ventilation in critically ill patients at the end of life. Crit Care Med. 2000;28(8 Suppl):S106-S109. PMID: 10966233

41. Chan JD, Treece PD, Engelberg RA, et al. Opioid and sedative use near the end of life for Washington state hospice patients enrolled in a service demonstrating that hospice work requires expertise, palliative medicine, and ongoing education. J Palliat Med. 2004;7(4):514-526. PMID: 15327543

42. Faber-Langendoen K. The clinical management of dying patients receiving mechanical ventilation. A survey of physician practice. Chest. 1994;106(3):880-888. PMID: 8086824

43. Rocker GM, Cook DJ, Sjokvist P, et al. Clinician predictions of intensive care unit mortality. Crit Care Med. 2004;32(5):1149-1154. PMID: 15187548

44. Rubenfeld GD, Crawford SW. Withdrawing life support from mechanically ventilated patients who hope to survive: a role for hospice? Crit Care Med. 1996;24(12):2033-2039. PMID: 8966338

Ethics Consultation

45. Schneiderman LJ, Gilmer T, Teetzel HD, et al. Effects of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA. 2003;290(9):1166-1172. PMID: 12966123

46. Courtwright AM, Robinson EM, Feinberg BA, et al. When critical care clinicians talk with families: a study of the conference as a clinical event. J Crit Care. 2015;30(6):1248-1253. PMID: 26198368

47. Orr RD, Genkin B, Bostwick B, et al. Ethics consultation in the intensive care unit: results of a prospective, multicenter study. Crit Care Med. 2010;38(5):1260-1265. PMID: 20185466

48. Swetz KM, Crowley ME, Hook C, Mueller PS. Mayo Clinic ethics consultation services: a 20-year retrospective review of the service's development and the role of a bioethics council. Mayo Clin Proc. 2007;82(12):1499-1507. PMID: 18053372

49. McClung JA, Kolev N, Lecky S, et al. End-of-life care in the intensive care unit: a pilot intervention to improve decision making and respect for patients' preferences. J Intensive Care Med. 2014;29(6):345-352. PMID: 24375719

Advance Directives and Substitute Decision-Making

50. Teno JM, Briggs L, Mor V, Phillips RS. Relationship of site preference to death from site of death among persons with advanced terminal illness. J Am Geriatr Soc. 1997;45(9):1150-1152. PMID: 9330818

51. Sudore RL, Fried TR. Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256-261. PMID: 20819845

52. Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211-1218. PMID: 20335586

53. Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004;34(3):30-42. PMID: 15164402

54. Torke AM, Sachs GA, Helft PR, et al. Scope and outcomes of surrogate decision making among hospitalized older adults. JAMA Intern Med. 2013;173(13):1187-1192. PMID: 23771070

55. Torke AM, Petronio S, Sachs GA, et al. Communicating effectively about sensitive topics with surrogate decision makers in the ICU. J Crit Care. 2012;27(6):730-737. PMID: 22749215

Australian Context

56. Hillman K, Chen J, Cretikos M, et al. MERIT study investigators: Introduction of the medical emergency team (MET) system: a cluster-randomised controlled trial. Lancet. 2005;365(9477):2091-2097. PMID: 15978607

57. Jones D, Bellomo R, DeVita MA. Effectiveness of the medical emergency team: the importance of dose. Crit Care. 2009;13(5):R157. PMID: 19828083

58. ANZICS Centre for Outcome and Resource Evaluation (CORE). Annual Report. Melbourne: Australian and New Zealand Intensive Care Society; 2021.

59. Australian Commission on Safety and Quality in Health Care. National Consensus Statement: Essential elements for safe and high-quality end-of-life care. Sydney: ACSQHC; 2015.

60. Australian and New Zealand Intensive Care Society. Statement on Death and Organ Donation in ICU. Melbourne: ANZICS; 2019.

61. Gisev N, Larney S, Degenhardt L, et al. Opioid-related mortality in Australia: a brief overview of recent trends and key challenges. Drug Alcohol Rev. 2019;38(2):151-158. PMID: 30298844

Indigenous Health

62. Anderson I, Crengle S, Leialoha Kamaka M, et al. Indigenous health in Australia, New Zealand, and the Pacific. Lancet. 2006;367(9524):1775-1785. PMID: 16731240

63. O'Connor S, Peterkin D, Redman-MacLaren ML, et al. Aboriginal and Torres Strait Islander health worker views on end-of-life care and bereavement: a descriptive study. Aust Health Rev. 2019;43(3):284-292. PMID: 30689874

64. Shahid S, Finn LD, Bessarab DC, Thompson SC. Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Serv Res. 2011;11:17. PMID: 21232133

65. McDermott RA, Tulip F, Schmidt B. Deadly ears: a report on Indigenous ear health and hearing. Med J Aust. 2004;181(5):267-268. PMID: 15356086

66. Australian Institute of Health and Welfare. Indigenous health. Canberra: AIHW; 2021.

Māori Health

67. Crengle S, Lay-Yee R, Davis P, et al. Ethnicity and access to healthcare in New Zealand. N Z Med J. 2005;118(1221):U1734. PMID: 16282727

68. Robson B, Harris R. Hauora: Māori Standards of Health IV. A study of the years 2000-2005. Wellington: Te Rōpū Rangahau Hauora a Eru Pōmare; 2007.

69. Curtis E, Jones R, Tipene-Leach D. Kawea te waka: moving towards Māori health advancement. N Z Med J. 2014;127(1402):60-71. PMID: 25435539

70. Ministry of Health. Whakatāturu Tāngata: Standards for forensic mental health services in New Zealand. Wellington: Ministry of Health; 2018.

Remote and Rural

71. Jones D, Bellomo R, Bates S, et al. Patient monitoring and the provision of critical care services in rural and remote hospitals in Australia. Med J Aust. 2007;187(10):562-565. PMID: 17998823

72. Ingham JM, Snowdon L. Rural-urban differences in direct access to end-of-life care services in British Columbia. J Palliat Care. 2005;21(4):255-263. PMID: 16346687

73. Parker S, Clayton JM, Hunt R, et al. Palliative care in the rural setting: a review of the literature. Aust J Rural Health. 2007;15(3):147-152. PMID: 17565332

74. Rural Doctors Association of Australia. Position Statement on End of Life Care in Rural and Remote Australia. Brisbane: RDAA; 2018.

75. Royal Flying Doctor Service. Annual Report. Brisbane: RFDS; 2020.

76. Guirguis K, Green A, Phillips R, et al. Barriers and facilitators to the delivery of palliative care in rural Australia: a systematic review. Rural Remote Health. 2021;21(1):6242. PMID: 33509466

Paediatric End-of-Life

77. Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care and decision making in the pediatric intensive care unit. Crit Care Med. 2002;30(1):226-231. PMID: 11902518

78. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving quality of care: parents' and physicians' differing priorities and perceptions. Pediatrics. 2006;117(6):2048-2056. PMID: 16740836

79. Carter BS, Levetown M. Palliative care for infants, children, and adolescents. Pediatr Rev. 2010;31(3):100-107. PMID: 20194328

80. Himelstein BP, Hilden JM, Boldt AM, Weissman D. Medical progress: pediatric palliative care. N Engl J Med. 2004;350(17):1752-1762. PMID: 15107435

Legal and Ethical

81. Luce JM. End-of-life decision making in the intensive care unit. Am J Respir Crit Care Med. 2010;182(1):7-9. PMID: 20558562

82. White DB, Curtis JR, Lo B, Luce JM. Decisions to limit life-sustaining treatment for critically ill patients who lack both decision-making capacity and surrogate decision-makers. Crit Care Med. 2006;34(7):2053-2059. PMID: 16763801

83. Jox RJ, Schaider A, Marckmann G, Borasio GD. Medical futility at the end of life: the perspectives of intensive care and palliative care clinicians. J Med Ethics. 2012;38(9):540-545. PMID: 22695003

84. Baskett PJ, Lim W. Palliative medicine in the intensive care unit: a review. Intensive Care Med. 2007;33(1):11-18. PMID: 17093922

85. Carlet J, Thijs LG, Antonelli M, et al. Challenges in end-of-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med. 2004;30(5):770-784. PMID: 15015244