Abstract
BackgroundAdvance 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 bodyDespite 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.ConclusionIn 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.
Highlights
Advance Care Planning (ACP) is essential for preparation for end-of-life
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 describe research to help further elucidate barriers, and how researchers and caregivers can design and deliver interventions that support advance care planning (ACP) to address this persistent challenge to quality end-of-life care
Summary
We outline the clinical, technical, and social barriers to collecting and using the psychosocial information required to perform ACP. Our goal is to equip nephrology care teams with information concerning the benefits of ACP, insights on the known barriers to ACP, and strategies to address them. Nephrology social workers are uniquely positioned to help enhance quality via improved patient engagement. Designing and executing ACP interventions that help to identify ACP perceptions and barriers is an important initial step, and social workers should be at the forefront of implementing ACP in their advocacy for patients and their families
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