Advance care planning beyond advance directives: perspectives from patients and surrogates.
CONTEXT
Advance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). The ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions.


OBJECTIVES
To understand what steps best prepare patients and surrogates for decision making.


METHODS
We conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38), aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semistructured focus groups asked what activities best prepared the participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus.


RESULTS
The mean±SD patient age was 78±8 years, and 61% were nonwhite. The mean±SD surrogate age was 57±10 years, and 91% were nonwhite. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify that they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict.


CONCLUSION
Beyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying that the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.
['McMahan|Ryan D|RD|', 'Knight|Sara J|SJ|', 'Fried|Terri R|TR|', 'Sudore|Rebecca L|RL|']
D032722:Advance Care Planning D000368:Aged D001293:Attitude to Death D001294:Attitude to Health D002140:California D032921:Consensus D003657:Decision Making D005260:Female D017144:Focus Groups D006801:Humans D008297:Male D010361:Patients D019727:Proxy
Advance directives decision making aging qualitative research