A Limited Opportunity: COVID-19 and Promotion of Advance Care Planning

Abstract

Background: Little is known about how COVID-19 has influenced the role of family caregivers in advance care planning (ACP). Objectives: To explore the experiences of family caregivers and ACP in the United States during the COVID-19 pandemic. Design: Exploratory sequential mixed-methods design of caregiver characteristics and pandemic response to ACP. Settings/Subjects: Family caregivers of care recipients with varied caregiving needs (dementia, mental illness, etc.). Measurements: Quantitative survey was done of fixed-choice questions of 82 caregivers. Semistructured qualitative telephone interviews were performed of a subsample of participants (n = 28). Results: Some (19%) of family caregivers revisited or updated advance directives of care recipients and/or had some type of contingency plan (33%) if they were to become ill. We identified three barriers caregivers faced during the pandemic that may have limited their engagement with ACP. Conclusions: Family caregivers need education regarding ACP and specific resources that can guide and support them through the process of ACP, for both themselves and care recipients.

Occurrence of Advance Care Planning and Hospital Course in Patients Admitted for Coronavirus Disease 2019 (COVID-19) During the Pandemic

“… 33 These concerns further compounded the pre-existing difficulties, including the lack of resources available to providers to guide ACP discussions, lack of information distributed to patients to accurately inform them of treatment choices, inconsistent documentation practices, and patient and provider discomfort with these topics. 50 - 53 A study by Grant et al, reviewing public perceptions on ACP, palliative care, and hospice care, 54 showed that most people were aware of ACP (80-90%) but few had either a designated health care agent or ACP documents completed (34%). In addition, they found most people did not know about palliative care (66-71%), and those that did, had misconceptions about it.…”

Situation, Education, Innovation, and Recommendation: A Large-Scale Systematic Review of Advance Care Planning in the Age of COVID-19

“…The pandemic exposed a significant gap in public and sometimes professional awareness and understanding of ACP. This lack of awareness or knowledge of ACP was identified as a major barrier [ 55 , 64 , 66 , 86 , 90 , 125 ]. Some studies noted a need for adequate ACP training for clinicians as a barrier [ 76 , 91 , 142 ].…”

“…Similar to the education and resources offered to healthcare professionals, public-facing ACP education and resources for patients and family members were also identified as facilitators for ACP [ 64 , 65 , 66 , 69 , 72 , 80 ]. The increased availability of resources and education for patients and families has been vital in facilitating ACP.…”

“You Feel Very Isolated”: Effects of COVID-19 Pandemic on Caregiver Social Connections

“…Eligibility criteria included: 18 years or older and self-identifying as a caregiver. Caregivers were defined as an individual who provides unpaid care such as emotional support and/or assists with basic care tasks to another person of any age with a mental and/or physical health condition or disability ( Dassel et al, 2021 ).…”

“…Quantitative survey item data relevant to this study are reported. Additional survey items and results are reported elsewhere ( Dassel et al, 2021 ).…”