Supporting quality care for ESRD patients: the social worker can help address barriers to advance care planning. 2020

Charles R Senteio, and Mary Beth Callahan
School of Communication and Information, Rutgers University, 4 Huntington Street, New Brunswick, NJ, 08901, USA. charles.senteio@rutgers.edu.

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. 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. 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.

UI MeSH Term Description Entries
D007676 Kidney Failure, Chronic The end-stage of CHRONIC RENAL INSUFFICIENCY. It is characterized by the severe irreversible kidney damage (as measured by the level of PROTEINURIA) and the reduction in GLOMERULAR FILTRATION RATE to less than 15 ml per min (Kidney Foundation: Kidney Disease Outcome Quality Initiative, 2002). These patients generally require HEMODIALYSIS or KIDNEY TRANSPLANTATION. ESRD,End-Stage Renal Disease,Renal Disease, End-Stage,Renal Failure, Chronic,Renal Failure, End-Stage,Chronic Kidney Failure,End-Stage Kidney Disease,Chronic Renal Failure,Disease, End-Stage Kidney,Disease, End-Stage Renal,End Stage Kidney Disease,End Stage Renal Disease,End-Stage Renal Failure,Kidney Disease, End-Stage,Renal Disease, End Stage,Renal Failure, End Stage
D011787 Quality of Health Care The levels of excellence which characterize the health service or health care provided based on accepted standards of quality. Pharmacy Audit,Quality of Care,Quality of Healthcare,Audit, Pharmacy,Care Quality,Health Care Quality,Healthcare Quality,Pharmacy Audits
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000068217 Social Workers Professionals who work with persons affected by social disadvantages such as POVERTY; mental and physical illness or disability, and social injustice. Their focus is on both the individual and his or her environment, including violations of their civil liberties and human rights. Social Worker,Worker, Social,Workers, Social
D057240 Patient Preference Individual's expression of desirability or value of one course of action, outcome, or selection in contrast to others. Patient Preferences,Preference, Patient,Preferences, Patient
D032722 Advance Care Planning Discussions with patients and/or their representatives about the goals and desired direction of the patient's care, particularly end-of-life care, in the event that the patient is or becomes incompetent to make decisions. Advance Health Care Planning,Advance Medical Planning,Medical Planning, Advance,Planning, Advance Medical

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