Shifting Paradigms: Advance Care Planning for Pain Management in Older Adults With Dementia

Staja "Star" Booker, PhD(c), MS, RN; Rashida D. Booker, MOT, LOTR


Gerontologist. 2018;58(3):420-427. 

In This Article

Abstract and Introduction


Ensuring effective pain management is an important quality of life (and death) issue for older adults with dementia, particularly since they are more vulnerable to under-assessment and under-treatment of pain. Yet, pain management decisions are often made by health care providers and caregivers with little to no input on the older adult's with dementia values for pain management. The Institute of Medicine (IOM) has recognized the revolutionary imperative to change the manner in which pain care is planned and coordinated. Implementing advance care planning (ACP) prior to advanced stages of dementia may assist in developing a person-centered pain management plan and improve pain care for this population throughout the dementia trajectory. This forum overviews the current state of pain management in dementia, discusses the significance of ACP in a pain management context, and offers practical solutions for common challenges in ACP. Dementia in this article is an umbrella term referring to the many forms of dementiathat cause cognitive impairment.


The Institute of Medicine (IOM, 2011) report on pain and the National Pain Strategy (2016) recognize an undeniable need to transform the perception, management, planning, and coordination of pain treatment across populations. Ultimately, a proactive system to pain management utilizing both prevention and palliation is needed. This paradigm shift, cultural transformation, and palliative turn attempts to improve the health of populations by "… infusing palliative care across whole health and social systems …" and saturating health care providers' training with palliative care and pain management education (Morrissey, Herr, & Levine, 2015, p. 247; IOM, 2011). This shift emphasizes advance care planning (ACP), improved communication and education, collaboration, care coordination, and promotion of comfort through early intervention and individualized plans for relief and control of pain (IOM, 2011; Morrissey, Herr, & Levine, 2015; Wilkie & Ezenwa, 2012). This is especially relevant for high-risk populations such as older adults with dementia, where gaps in pain management planning and coordination have contributed to treatment inadequacy. As chronic pain and dementia jointly become increasingly more prevalent in the context of rising life expectancy (van Kooten et al., 2015; Sosa-Ortiz, Acosta-Castillo, & Prince, 2012; Corbett et al., 2014), health promotion activities that involve planning and implementing patient-centered pain management are necessary in sustaining quality of life throughout the trajectory of dementia.

ACP is one practical solution to help mitigate the gaps in planning and coordinating management of pain in older adults with dementia. ACP entails recurrent conversations between patients, caregivers, and providers in which patients specify health care preferences in the event they are unable to make such decisions (Lum, Sudore, & Bekelman, 2015). ACP typically involves completion of an advance directive, a legal form which indicates preferences for life-sustaining medical care, comfort care, and postmortem care. Recommendations suggest that advance care plans move beyond the vagueness of "comfort care," and provide more specific directions to guide care of symptoms, such as pain (Unroe, Hickman, & Torke, (2016); AAHPM Research Committee Writing Group, 2016). Although ACP is an important component of geriatric pain management (Booker, Bartoszczyk, & Herr, 2016; Benton, 2006; Reuben et al., 2016; Mohanty et al., 2016), there is limited discourse on the implications of predetermining pain management preferences and needs in advance directives prior to cognitive incapacity. In this forum, we review the current state of pain management in dementia, discuss the significance of ACP in a pain management context, and offer practical solutions for challenges in ACP.