Improving advance care planning by accommodating family preferences

Area of Science:

• Medical Ethics
• Palliative Care
• Health Communication

Background:

• Family members frequently lack crucial knowledge of patients' values and preferences, hindering their effectiveness as surrogate decision-makers.
• Inadequate information poses a significant challenge in ensuring patient-centered care when surrogates must make critical health decisions.

Purpose of the Study:

• To investigate if disparities in advance care planning preferences contribute to surrogates' lack of information.
• To identify specific differences in values and preferences that may impede surrogate decision-making.

Main Methods:

• Utilized face-to-face and telephone surveys with structured questionnaires.
• Included 242 pairs of dialysis patients and their designated family surrogates.
• Assessed end-of-life care discussion content, patient-surrogate attitudes toward explicit preference expression, surrogate decision-making priorities, and agreement on values like suffering and certainty.

Main Results:

• Most patients (90%) designated family members as surrogates.
• Increased end-of-life discussions did not significantly improve surrogate knowledge of patient values or preferences.
• Surrogates desired more explicit instructions (written/oral) than patients wished to provide (62% vs. 39%).
• Surrogates prioritized patient wishes over physician recommendations for treatment cessation (62% vs. 45%).
• Surrogates were less inclined than patients to prolong life with suffering (12% vs. 23%) and more concerned about certainty before stopping treatment (85% vs. 77%).

Conclusions:

• Discrepancies in advance care planning preferences between patients and surrogates are a key factor in surrogate information deficits.
• Insufficient discussion of specific end-of-life values and preferences contributes to surrogates' inadequate knowledge.
• Improving communication and aligning expectations in advance care planning is essential for effective surrogate decision-making.