Wishes Left Unspoken: Engaging Underserved Populations in End-of-Life Advance Care Planning

Abstract

The end of life can be a highly emotional and difficult time for patients and their families. Advance care planning for end-of-life care is one option for helping to mitigate the burden of this experience. Despite its advantages, gaps in end-of-life advance care planning participation persist, particularly among underserved segments of the U.S. population who might benefit from it. This column highlights barriers to end-of-life advance care planning among medically underserved populations and discusses opportunities for greater engagement.

Person‐directed care planning in nursing homes: A scoping review

“…The disability rights literature describes care planning as a way of helping individuals take control of their lives and the need for care plans to be person‐centred to improve quality of life among individuals with intellectual disabilities (O'Brien & O'Brien, 2002; Smith & Carey, 2013; Smull & Sanderson, 2009). Literature on advance care planning emphasises that individuals at the end of life can autonomously make informed decisions about the care they want to receive (Hilliard, Washington, Hines, & McGill, 2013). …”

Predicting Racial and Ethnic Disparities in Advance Care Planning Using the Integrated Behavioral Model

“…Completing ACP has been shown to improve end-of-life medical care for patients by ensuring that patients’ wishes are established, documented, and followed (Detering, Hancock, Reade, & Silvester, 2010). ACP allows patients to make cooperative health-care decisions with their health-care providers and family members, gives patients a sense of control over their health-care decisions, reduces futile medical treatment and excess burden on patients and family members, and helps to prevent unnecessary prolongation of the dying process (Coustasse, Quiroz, & Lurie, 2008; Hilliard, Washington, Hines, & McGill, 2013). ACP also helps to increase the proportion of patients who die at home or under hospice care (Bischoff, Sudore, Miao, Boscardin, & Smith, 2013).…”

Assessing Barriers to Advance Care Planning Engagement among Young Adults Using the Precaution Adoption Process Model

“…Despite some research suggesting that ACP is ineffective due to changes in preferences throughout the course of an illness or inconsistencies in measuring outcomes about ACP (Johnson et al, 2018; Walsh, 2020), significant research points to ACP being beneficial for patients. ACP engagement is shown to improve end-of-life medical care (Bischoff et al, 2013), enhance cooperative decision-making between patients and their health care providers (Hilliard et al, 2013), increase patient autonomy over their health care decisions and place of death (Orlovic et al, 2020), and prevent unnecessary prolongation of the dying process (Brinkman-Stoppelenburg et al, 2014). Furthermore, ACP engagement helps to avoid futile treatment for patients (Jimenez et al, 2018), reduces high medical costs from aggressive treatments (Coustasse et al, 2008), reduces stress for surrogate decision makers (Levoy et al, 2020), increases positive caregiver perceptions regarding patient quality of life (Brinkman-Stoppelenburg et al, 2014; Levoy et al, 2020), and reduces anxiety and depression among surviving relatives (Detering et al, 2010).…”