Foundational Principles of Goals of Care & Advance Care Planning

1. Epidemiology of ACP in Critically Ill Patients

ACP documentation at ICU admission is inconsistently applied, with significant variability by institution, patient population, and system processes.

A. Prevalence & Incidence Rates in ICU Populations

• Documented ACP is present in only 10–50% of ICU admissions, highlighting a significant care gap.
• Early outpatient ACP engagement can boost ICU ACP completion by approximately 25%.
• Underrepresented minorities have approximately 30% lower rates of ACP documentation, indicating a critical health equity issue.
• Lack of integrated Electronic Health Record (EHR) prompts and standardized workflows are major contributors to low and inconsistent rates.

B. Impact of Documented ACP on Clinical & Family Outcomes

• Associated with a 20–30% reduction in nonbeneficial ICU interventions, such as prolonged mechanical ventilation or vasopressor use at the end of life.
• Linked to shorter ICU lengths of stay and fewer in-hospital deaths, aligning care with patient preferences.
• Improves family satisfaction and significantly reduces the surrogate’s decisional burden, anxiety, and risk of complicated grief.
• It is crucial to remember that static documents can be misinterpreted; ongoing dialogue is essential to ensure care remains aligned with evolving patient conditions.

2. Definitions & Clinical Applications

Clear, consistent terminology is essential to ensure the appropriate application of ACP tools across different care settings and to facilitate communication among clinicians, patients, and families.

A. Goals of Care: Curative vs. Comfort-Focused

• Curative Intent: Focuses on life-prolonging treatments aimed at reversing the underlying pathology. Examples include vasopressors, mechanical ventilation, renal replacement therapy, and potent antimicrobials.
• Comfort-Focused Intent: Prioritizes symptom relief and quality of life when curative treatments are no longer beneficial or desired. This may include aggressive symptom management and palliative sedation.

B. Advance Care Planning: The Process vs. The Document

• Process: ACP is an iterative series of conversations between a patient, their family, and clinicians. Its goal is to align future medical treatments with the patient’s values, preferences, and goals, and to identify a surrogate decision-maker.
• Document: The tangible output of the ACP process. These legal documents, such as advance directives or POLST forms, formalize the patient’s preferences.

C. Comparing Key Document Types

3. Ethical Principles Guiding Goals of Care Discussions

A strong ethical foundation provides a framework for navigating complex conversations, respecting patient preferences, and ensuring equitable, patient-centered care.

A. Autonomy

This principle centers on respecting a patient’s right to self-determination. It is upheld by providing clear, unbiased information about their diagnosis, prognosis, and treatment options. When a patient loses decision-making capacity, autonomy is honored through substituted judgment, where the surrogate makes decisions based on the patient’s previously expressed values and wishes.

B. Beneficence & Nonmaleficence

These twin principles compel clinicians to act in the patient’s best interest (beneficence) and to avoid causing harm (nonmaleficence). In Goals of Care discussions, this involves a careful balancing act: weighing the potential benefits of an intervention against the burdens, such as pain, suffering, and loss of dignity. It provides the ethical rationale for avoiding treatments that offer marginal survival benefit while causing significant suffering.

C. Justice

Justice requires the fair and equitable distribution of healthcare resources and access to care. In the context of ACP, this means actively working to ensure all patients have an equal opportunity to engage in these discussions, regardless of cultural background, language, or socioeconomic status. It involves addressing and mitigating systemic disparities in care.

D. Ethical Dilemmas & Conflict Resolution

Common dilemmas include conflicts between a surrogate’s decision and a patient’s advance directive, prognostic uncertainty, and requests for treatments deemed futile by the clinical team. A structured approach is key to resolution.

4. Barriers to Effective Goals of Care Conversations

Multiple factors at the patient, clinician, and system levels can impede timely and effective Goals of Care discussions. Recognizing these barriers is the first step toward developing targeted mitigation strategies.

A. Patient-Level Barriers

Patients and families may struggle with denial of illness severity, low health literacy, or deeply held cultural or religious beliefs about life and death. A history of negative experiences can also lead to mistrust of the healthcare system.
Mitigation: Use culturally sensitive, plain-language educational materials and professional interpreter services. Build rapport before initiating difficult conversations.

B. Clinician-Level Barriers

Clinicians often cite severe time constraints, inadequate training in communication skills, and prognostic uncertainty as major hurdles. The emotional toll and moral distress associated with these conversations can also lead to avoidance.
Mitigation: Employ brief, structured communication tools (e.g., SPIKES, REMAP). Participate in dedicated communication skills training and simulation.

C. System-Level Barriers

Healthcare systems may lack standardized triggers for initiating ACP discussions. Poor EHR integration, fragmented state registries, and a lack of reimbursement can disincentivize these conversations.
Mitigation: Develop automated EHR alerts for high-risk patients without documented ACP. Create centralized, easily accessible ACP dashboards and implement regular auditing processes.

5. Legal & Regulatory Frameworks

Legal provisions, which vary by jurisdiction, provide the authority for advance directives and surrogate decision-making. These frameworks are designed to ensure that a patient’s wishes are honored while protecting clinicians who act in good faith.

A. Advance Directives & POLST Laws by State

The legal requirements for creating a valid advance directive, such as the number of witnesses or the need for notarization, differ significantly among states. Similarly, while POLST programs are active in most states, the specific requirements for physician attestation, form color, and inclusion in state registries can vary.

B. Surrogate Decision-Maker Identification

When a patient lacks capacity and has not appointed a proxy, states provide a default hierarchy for identifying a surrogate. This hierarchy typically prioritizes a spouse, followed by adult children, parents, and then siblings. The legal standard for surrogate decision-making is substituted judgment (what the patient would have wanted). If the patient’s values are unknown, the surrogate should act in the patient’s best interests.

C. Documentation & EHR Accessibility

Proper documentation is critical. The Centers for Medicare & Medicaid Services (CMS) now provides reimbursement codes for ACP conversations (CPT 99497 and 99498), incentivizing their formal completion. For these documents to be effective, they must be scanned, correctly indexed, and flagged for high visibility within the EHR.

D. Liability & Institutional Policies

Clinicians are generally shielded from civil and criminal liability when they follow a valid, good-faith interpretation of an advance directive or POLST form. Institutional policies are essential to support this process. These policies should clearly define roles for verifying and implementing ACP documents, provide for regular compliance audits, and ensure that all forms are up-to-date with state law.