What is the best approach to initiate advance directive discussions with patients?

Initiating Advance Directive Discussions with Patients

Clinicians should initiate advance directive discussions early—ideally within one month of diagnosis for patients with terminal illness, and proactively for all adults aged 18 and older regardless of health status, using a structured communication framework that begins by asking permission, assessing understanding, and exploring patient goals before documenting preferences. 1, 2

When to Initiate the Conversation

Universal Screening for All Adults

• All adults aged 18 years and older should complete an advance directive regardless of current health status, as anyone can face sudden, unexpected life-limiting illness or injury that renders them unable to make their own medical decisions. 2
• More than a quarter of elderly patients require surrogate decision-making at the end of life, making advance directives essential for ensuring patient preferences guide care. 2, 3

Priority Timing for Serious Illness

• For patients with incurable illness, initiate conversations within one month of diagnosis and readdress periodically based on clinical events or patient preferences (strong recommendation). 1
• Patients with life expectancy less than one year require more intensive advance care planning discussions and should complete actionable medical orders (like POLST) in addition to traditional advance directives. 2

Recognize Clinical Triggers

Specific sentinel events should prompt advance directive discussions in patients with advanced disease: 1

• Cancer progression or decline in functional status
• Multiple emergency department visits, hospital admissions, or ICU stays
• Consideration of new cancer-directed therapies after progression on previous treatments
• Consideration of high-risk interventions (hemodialysis, palliative surgery, feeding tube placement)
• Patient or family request for end-of-life care planning conversation

Structured Communication Framework

Step 1: Prepare and Build Rapport

• Review the medical chart for documentation of previous end-of-life discussions before initiating the conversation. 1
• Prepare yourself by anticipating patient and family emotions as well as questions about prognosis. 1
• Develop rapport with the patient and family or caregivers before diving into difficult topics. 1

Step 2: Assess Information Preferences and Understanding

• Ask patients and families about their preferences for information sharing before providing new information. 1
• Ask patients and families what they understand about their medical situation to establish baseline knowledge. 1
• Ask permission before sharing new medical information, including difficult news, prognostic information, or significant changes in treatment plan. 1

Step 3: Provide Information Appropriately

• Provide information in small amounts, using language appropriate to the patient's level of education and health literacy. 1
• Check understanding frequently throughout the conversation. 1
• Avoid medical jargon and ensure patients understand realistic outcomes of interventions—for example, CPR has an average survival rate of only 15%, with 44% of survivors experiencing significant functional decline. 2

Step 4: Explore Goals, Values, and Cultural Factors

• Ask patients and families to define their goals in light of the medical situation: What is most important to them? What are their priorities? 1
• Explain why advance care planning is important and why patients should discuss their goals, values, and care preferences with their appointed health care agent. 1
• Explore how a patient's culture, religion, or spiritual belief system affects their end-of-life decision making (strong recommendation). 1
• Avoid assumptions about preferences based on stereotypes related to race, ethnicity, culture, religion, or spirituality. 1
• Ask open-ended questions regarding the impact of a patient's culture and spirituality on their medical decision making. 1

Step 5: Address Emotions Throughout

• Acknowledge and address emotions throughout the conversation, as this is critical to patient-centered communication. 1
• Recognize that advance care planning is about not only retaining autonomy but also building personal relationships and relieving burdens placed on others. 1

Step 6: Align Care with Goals and Document

• Align patient goals, values, and care preferences with treatments and services offered. 1
• Inquire if all appropriate family members are aware of patient's goals. 1
• Document a surrogate decision maker and encourage patients to complete an advance directive early, because many patients with advanced illness experience altered mental status that may limit their ability to designate decision makers. 1
• Document end-of-life conversations in the medical record to ensure continuity across care settings. 1, 2

Step 7: Summarize and Plan for Follow-Up

• Summarize the conversation and establish a plan for the future. 1
• Consider spreading out the conversation over two or more visits rather than attempting to cover everything at once. 1
• Anticipate that patient goals and preferences may change over time in response to disease- and treatment-related factors. 1

Overcoming Common Barriers

Physician Barriers to Address

Healthcare professionals should conduct self-assessment of potential barriers: 1

• Discomfort discussing death or belief that "accepting mortality" means "giving up hope"
• Fear that discussing death will "make it happen"
• Uncertainty about how to broach the topic
• Lack of understanding about the benefits of advance directives

The Reality of Physician Inaction

• Only 19% of patients report discussing advance directives with their clinician, and lack of physician initiative is among the most frequently cited barriers. 2
• There is a discrepancy between patient-reported interest in discussing advance directives and physician-reported discussions, with patients favoring early discussion nearly twice as much as physicians. 1
• The strongest predictor of patient satisfaction with care is the presence of advance directive discussions. 1, 3

Patient Readiness Assessment

Use a stages-of-change approach to tailor your intervention: 1

• Precontemplation stage: Patient sees no need—provide educational information about advance directives
• Contemplation stage: Patient sees the need but has barriers—identify and remove specific barriers (lack of knowledge, discomfort, time constraints, difficulty discussing with family)
• Preparation stage: Patient is ready to complete—focus on motivation and facilitation
• Action stage: Patient has completed—obtain copy, elicit values, encourage family discussion, assess appropriateness of designated health care agent
• Maintenance stage: Review and update periodically

Essential Documentation Components

What to Include in Advance Directives

Advance directives should include both: 2, 4

• Living will specifying treatment preferences (CPR, mechanical ventilation, ICU admission, artificial nutrition and hydration, antibiotic use)
• Durable power of attorney for health care appointing a surrogate decision-maker

Ensuring Accessibility

• Written advance directives are more legally trustworthy than recollections of conversations and should be properly documented in the medical record. 2, 4
• Give copies to the patient's family, loved ones, and physician. 2
• Ensure mechanisms exist for healthcare providers to access advance directives across care settings. 2, 4

Critical Pitfalls to Avoid

• Do not wait until death is imminent or capacity is compromised to initiate these discussions—advance directives should be completed while patients retain decision-making capacity. 2
• Do not assume completion means the conversation is over—revisit regularly as medical conditions and treatment preferences may change over time. 2
• Do not rely solely on verbal discussions—families withdrawing life-sustaining treatments experience lowest stress when written directives exist, intermediate stress with verbal discussions, and highest stress when no advance planning occurred. 1, 3
• Do not make cultural assumptions—the best method for understanding cultural factors is to simply ask the patient. 1
• Healthcare facilities receiving federal funding are legally mandated by the Patient Self-Determination Act of 1990 to facilitate completion of advance directives if patients desire them. 2, 3, 4