Bridging the Gap: The Need for Health Literacy and Patient Advocacy in Advanced Care Planning
An Overlooked Divide in Healthcare Knowledge
Navigating the healthcare system as a medical student, nurse, or physician is already complex, despite various supports aimed at our well-being. Early in medical school, a stark realization dawned: there exists a significant gap in healthcare knowledge between those inside the field and those on the outside. This difference in understanding becomes painfully evident in critical moments. One colleague shared how their family struggled to communicate effectively with physicians and nurses in the emergency room when deciding on a Goals of Care Designation (GCD) for their grandfather. As the family member with the most healthcare knowledge, my colleague shouldered the responsibility of explaining this crucial concept, all while under the implicit pressure of busy staff who expected rapid decisions.
GCD and Advance Care Planning (ACP) are foundational to quality healthcare, yet they are often neglected. ACP conversations need to happen early and regularly to ensure the best outcomes, especially as individuals age. In today’s age of instant communication and digital health information, healthcare professionals have no excuse to overlook ACP and GCD as vital components of patient care.
In response to this gap, my fellow medical student, Erin Zader, and I began a scoping review of the existing literature to identify where, and why, such disconnects occur between the perceived need for ACP and the scarcity of ACP discussions in our communities.
Understanding the Gap in Patient-Physician Communication
Preliminary data from our review reveals significant gaps in the physician-patient relationship that contribute to the lack of ACP discussions. From the provider’s perspective, many physicians believe that a perceived lack of patient interest or limited consultation time justifies postponing ACP conversations until absolutely necessary. However, our findings suggest that patients are eager for ACP discussions but struggle to initiate and sustain meaningful conversations with their doctors.
To close this gap, the literature highlights the need for “shared decision-making,” (SDM) the use of “decision aids,” (DA) and a focus on “health literacy.” These elements are foundational to advancing patient-centered care in this area. While the importance of these pillars is acknowledged in both clinical practice and medical education, the extent to which they are applied remains inconsistent and requires further integration.
A worrisome realization from our review was the lack of attention to health literacy within the ACP field. Few studies discussed interventions aimed at improving health literacy or addressed the current state of health literacy within their communities. Additionally, there is a lack of in research on SDM, DA, and health literacy in Canada, with most relevant literature sourced from U.S. studies. Differences in demographics, education systems, and healthcare structures should make one hesitant to generalize U.S. findings to the Canadian context. This lack of Canadian-focused research underscores the need for localized studies to address ACP communication gaps effectively.
Promoting ACP through Passive Interventions
Identifying these problems is only a first step; practical solutions are what truly matter. Empowering primary care providers to support ACP allows them to build on patients’ existing knowledge and provide more individualized care. However, rather than overburdening physicians with additional tasks, we should emphasize passive interventions that enable patients to initiate ACP discussions themselves. Simple tools such as infographics, pamphlets, and brochures in waiting areas and examination rooms can expose patients to these crucial topics, fostering awareness and encouraging them to bring up ACP and GCD when meeting with their healthcare providers.
The Universal Relevance of ACP Advocacy
Regardless of the field a medical student intends to pursue or the specialty a physician currently practices, advocacy for ACP is relevant across disciplines. Surgeons, anesthetists, internists, and family doctors alike benefit from understanding their patients' healthcare goals to optimize outcomes. Furthermore, knowledge of a patient's social support network, which ACP documentation often reveals, allows providers to offer treatments aligned with the patient’s lifestyle and circumstances.
A Call for a Proactive, Patient-Centered Approach
As medical students, our exposure to patient interactions, even from the sidelines, underscores the vital role of ACP and health literacy in patient care. By better understanding and addressing these gaps with proactive communication strategies and accessible resources, we can create a more compassionate, informed healthcare environment. In doing so, we empower patients and their families to navigate critical healthcare decisions with confidence and clarity, fostering an approach that truly respects each patient's values and preferences.
