Cancer caregivers advocate a patient- and family-centered approach to advance care planning

Abstract

Context: Cancer caregivers have important roles in delivering practical, emotional, and end-of-life support to patients; however, they express multiple unmet needs, particularly information on future care planning. Early regular communication and decision making may improve access to timely information, alleviate anxiety, reduce uncertainty, and improve coping strategies.

Objectives: This study examines how cancer caregivers view advance care planning (ACP) to inform an ACP program in an Australian cancer center.

Methods: This study used a qualitative descriptive design with grounded theory overtones. Eighteen caregivers of patients from lung and gastrointestinal tumor streams participated in focus groups or semistructured interviews, which incorporated the vignette technique.

Results: Caregivers believe that, although confronting, ACP discussions can be helpful. Conversations are sometimes patient initiated, although caregivers may intend to sensitively broach conversations over time. Findings highlight the impact of caregiver hierarchies, adaptive family decision-making styles, and complex cultural influences on decision making. Some caregivers may develop subsidiary care intentions, based on "knowing" or overriding patients' desires. Hindrances on caregivers supporting patients' ACPs include limited information access, patient or caregiver resistance to engage in conversations, and ACPs association in oncology with losing hope. Many caregivers wanted professional support and further opportunities to obtain information, develop subsidiary plans, and help patients engage in ACP discussions.

Conclusion: Findings highlight the influence of cancer caregivers and family dynamics over ACP decisions and actualization of future care plans. A patient- and family-centered care approach to ACP, promoting shared decision making and caregiver support, is recommended. Given that caregivers may override and, plausibly, misinterpret patients' desires, caregivers' subsidiary planning warrants further investigation.

Keywords: Advance care planning; cancer; caregivers; decision making; qualitative research; shared decision making.