Pain and Decision Making Among Seriously Ill Older Adults

Title: Pain and Decision Making Among Seriously Ill Older Adults

Investigator: Mary Beth Morrissey, PhD, MPH, JD, Fellow of Global Health Care Innovation Management Center, and Faculty Director, Post-Masters Health Care Management Certificate Program in Public Health, Fordham University Graduate School of Business Administration

Overview: This study will investigate experiences and meanings of pain among seriously ill older adults and their family members, and the relationship between these and older adults’ end-of-life decision-making. In addition, the study will focus on mechanisms and predictors of pain experience in aging. The study will place the pain experiences and pain care and management needs of seriously ill older adults in their life-historical contexts. Previous research has shown that self-efficacy and agency have a relationship to enactive decision making and behavioral change (Bandura,1982), although it is known that there is variation in serious illness and end-of-life experience across cultures (Cagle & Altilio, 2011). In this study, researchers wish to investigate this variation in pain experiences including the possibility that pain may be a meaning structure, an act, and an intentional posture in the world (Honkasalo, 2000), that may be part of an agentic decision making process that helps to prevent or relieve suffering.

The primary aims of this pilot study are to: i) investigate the dialectical relationship between older adults’ decision making and pain experiences and outcomes, and the role and effectiveness of processes of decision making in changing or modifying older adults’ pain; ii) investigate the relationship between older adults’ decision making including self-efficacy, agency, decisional conflict, and pain outcomes; iii) describe lived experiences of pain from the perspectives of older adults and their family members in their life historical contexts, and deepen understanding of their meanings and ethical implications for decision making; iv) identify the distinct structures of pain and suffering experiences, and the relationship of pain to suffering experience; and v) explore what seriously ill older adults want at the end of life as they live through pain and make decisions about their health and health care, especially in light of oftentimes incongruence between clinical data including goals of care and assessments, and patients’ life-historical experience.