Perceptions of Patient Advocacy In End-of-Life Care with Vulnerable Populations

Purpose: The purpose of this study is to increase healthcare professions' understanding and conceptualization of patient advocacy. Health care providers have a professional duty to be patient advocates, to recognize and address gaps in patient care that particularly impact vulnerable populations (e.g., terminally ill minorities). The patient-provider relationship necessitates certain obligations for health care providers, requiring them to recognize their responsibility to serve the patient's interests based upon patient autonomy and self-determination. More than ever, concerns about ethical and social justice in healthcare settings challenge the traditional role of providers as patient advocates, especially when providing care for vulnerable, terminally ill patients.

Methods: We explored providers' perception of patient advocacy as a means to remedy gaps in patient care that often involve ethical challenges and impact a vulnerable Latino population. This secondary qualitative analysis utilizes data from a parent study that explored providers' experiences with and roles for engaging Latinos with life-limiting cancers in end-of-life discussions. Using a constant comparison method and thematic analysis, we used all 44 transcripts, including field notes and case summaries to conduct a supplementary analysis about patient advocacy.

Results: Providers experienced patient advocacy in end-of-life care with Latino cancer patients as: 1) any action(s) taken by providers to obtain information and/or services that would likely be missed or not be provided at all, and 2) described ways in which they encourage, empower, and support patients, their family members, and other providers to take action to enhance the quality of their care. Themes emerged distinguishing the components of patient advocacy as advocacy triggers, assessing patients' needs, taking on responsibility to advocate, standing up for patients' rights, providing supportive care, empowering patients and their family members, providing non-judgmental guidance, and reconnecting patients to their providers.

Implications: Social workers should become aware of the need for patient advocacy especially when working with vulnerable populations. As a result of gaps in patient care, providers take up advocacy roles; however, embracing such roles without considering the implications can also present problems. While speaking up for patient rights and empowering patients to become self-advocates is believed to improve the quality of care, it can also be disruptive. Embracing advocacy roles can cause frustration and burnout among providers as they feel disempowered and experience professional reprisals by providers with authority to keep the status quo. However, as terminally ill patients near the end, they need assistance with making informed decisions that reflect their best interest. Considering the consequences of gaps in end-of-life patient care—particularly with vulnerable populations—further attention is needed to develop clinical strategies that include patient advocacy, while improving the overall quality of care.