Serious Illness and Health Care Threats to Personal Legacy Goals.

Résumé

INTRODUCTION: High-quality care for people with serious illness requires understanding what matters most. Although goals-of-care conversations may emphasize values and treatment preferences, patients hold goals related to identity, relationships, and legacy; how they wish to be remembered and what they hope to leave behind. These legacy goals can shape treatment choices, yet they are rarely elicited in clinical care. The authors explored how people living with serious illness consider legacy, how legacy goals inform care decisions, and how health care supports or constrains them.METHODS: The authors conducted 1-hour telephone interviews with Kaiser Permanente Washington members who received at least 1 palliative care consultation in the prior year. Interviews were recorded, transcribed, and analyzed using inductive thematic analysis with iterative coding and consensus.RESULTS: Five themes emerged: 1) participants actively planned for legacy, with legacy goals often clarified by serious illness; 2) illness and its care introduced threats to legacy goals; 3) financial strain and insurance coverage were major threats; 4) participants believed their care would differ if teams understood their legacy goals; and 5) participants wanted to communicate their legacy goals to their care teams.DISCUSSION: Legacy goals often become more salient after a serious illness diagnosis, helping people clarify priorities and values as they approach end of life. Integrating legacy-related conversations into palliative care may enhance person-centered care by addressing identity, relationships, and meaning alongside medical preferences.CONCLUSION: Serious illness and its treatment can jeopardize patients' ability to achieve legacy goals. Interventions to elicit and support legacy goals may improve high-quality palliative care.