Professionalism, Advocacy, and Providing End-of-Life Care in a Public Healthcare System

Purpose: The purpose of this study is to raise awareness about patient advocacy in the context of a public healthcare setting.  Healthcare providers may not be aware of how multiple access barriers influence end-of-life (EOL) care discussions for vulnerable minority populations.  Such patients often need assistance to navigate the complexities of healthcare systems, especially as they cope with life-limiting medical conditions.  While ethical guidelines for healthcare professionals indicate that they have a responsibility to work within an ethical framework to ensure that all patients receive appropriate medical attention, patient care gaps challenge providers to act outside of their traditional roles to engage in patient advocacy in order to address social justice issues that arise in public healthcare settings.

Methods: This secondary analysis of qualitative interviews with providers (physicians, nurses, social workers, and chaplains) explored their perceptions of patient care gaps in a public sector healthcare system and their roles as patient advocates.  This study asked providers about managing EOL care for terminally ill Latino patients and explored the actions they embrace to improve care. Using a constant comparison method and thematic analysis, all transcripts (n=46) were utilized including field notes and case summaries to conduct a supplementary analysis about advocacy in a public healthcare system.

Results: Providers outlined specific problems for patients who utilize a California public sector healthcare system for their care including access barriers and long wait times, language barriers and health literacy issues leading to mismanaged care, immigrant issues especially for undocumented individuals who do not qualify for many services and experience fear, uncertainty, and distrust in providers.  Providers described how these problems are intertwined with gaps in EOL care where patients lack understanding of the severity of their life-limiting illness and often transition in and out of the medical setting before developing an EOL care plan.  As providers embraced patient advocacy roles, they reported feeling responsible to support patients' rights.  Under these circumstances, many providers emphasized a need to slow down the medical care process to obtain information and/or appropriate services that had been missed and described how they would support and empower patients to request information and access services. 

Implications:  Advocacy is needed especially for disadvantaged, terminally ill patients when entering the healthcare system because, along with other factors like socio-cultural beliefs, previous experiences with the healthcare system, and socio-economic issues, the medical system can negatively influence patient care, making patients more vulnerable.  For providers working in a fragmented public service delivery system, patient advocacy should be central to patient care.  It is noteworthy that advocacy may have unintended consequences where providers' actions place them in opposition of colleagues who maintain the status quo.  However, recognizing patient care gaps and the suffering that ensues is a multidisciplinary matter that involves directly acknowledging problems as they arise and having all providers work together (physicians, nurses, social workers, chaplains) to improve care. Considering the consequences of healthcare gaps, further attention is needed to develop multidisciplinary care strategies that embrace advocacy to improve the overall quality of care.