Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers: A Mixed Methods Study

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Project Summary/Abstract Surgery often has benefits, such as reducing symptoms or extending life, but it is not without risk. Patients vary both in their tolerance of symptoms and of surgical risk. The concept of shared, patient preference-concordant surgical decision making potentially helps patients achieve their goals. Surgical decision-making for persons living with dementia (PLWD) is challenging. Although the influence of race and ethnicity has been examined in such contexts as patient-physician communication and implicit bias, much of this literature focuses on Black-White disparities, rather than Hispanic-Non-Hispanic. To gain a better understanding of the factors and relationships influencing surgical decision-making for Hispanic PLWDs, and, in turn, develop effective protocols to mitigate negative outcomes, it is important that we understand the perspectives of all the stakeholders involved, including patients, family members, and care providers. This supplement seeks to fill a significant gap in the literature by exploring approaches to surgical decision-making for Hispanic patients with dementia from these perspectives. The proposed mixed methods study is designed to understand the epidemiology of surgery for PLWD, as well as patient, caregiver, and provider practices and challenges of surgical decision-making in clinical settings. Research Aim 1: We will explore in-depth how surgical care providers, Hispanic patients with dementia, and patient family members approach the surgical decision-making process. Specifically, we seek to understand the facilitators and barriers for making patient goal-concordant care decisions by examining the perceived relevance of 1) potential racial bias, 2) patient and family values and culture, and 3) communication and language. Research Aim 2: We will explore the perceived hospital experiences of persons living with dementia and their family caregivers after the patients have been discharged. Specifically, we will examine discharge pathways, perceived communication quality, and perceptions of hospital environments to uncover future avenues for research, intervention, and hospital policy improvement.