Supporting quality care for ESRD patients: the social worker can help address barriers to advance care planning

Abstract

Background: Advance Care Planning (ACP) is essential for preparation for end-of-life. It is a means through which patients clarify their treatment wishes. ACP is a patient-centered, dynamic process involving patients, their families, and caregivers. It is designed to 1) clarify goals of care, 2) increase patient agency over their care and treatments, and 3) help prepare for death. ACP is an active process; the end-stage renal disease (ESRD) illness trajectory creates health circumstances that necessitate that caregivers assess and nurture patient readiness for ACP discussions. Effective ACP enhances patient engagement and quality of life resulting in better quality of care.

Main body: Despite these benefits, ACP is not consistently completed. Clinical, technical, and social barriers result in key challenges to quality care. First, ACP requires caregivers to have end-of-life conversations that they lack the training to perform and often find difficult. Second, electronic health record (EHR) tools do not enable the efficient exchange of requisite psychosocial information such as treatment burden, patient preferences, health beliefs, priorities, and understanding of prognosis. This results in a lack of information available to enable patients and their families to understand the impact of illness and treatment options. Third, culture plays a vital role in end-of-life conversations. Social barriers include circumstances when a patient's cultural beliefs or value system conflicts with the caregiver's beliefs. Caregivers describe this disconnect as a key barrier to ACP. Consistent ACP is integral to quality patient-centered care and social workers' training and clinical roles uniquely position them to support ACP.

Conclusion: In this debate, we detail the known barriers to completing ACP for ESRD patients, and we describe its benefits. We detail how social workers, in particular, can support health outcomes by promoting the health information exchange that occurs during these sensitive conversations with patients, their family, and care team members. We aim to inform clinical social workers of this opportunity to enhance quality care by engaging in ACP. We describe research to help further elucidate barriers, and how researchers and caregivers can design and deliver interventions that support ACP to address this persistent challenge to quality end-of-life care.

Keywords: Advance care planning; ERD quality care; End-of-life care.