“I Might Need This for Later.” “Back Pocketing” Hospice Information among Caregivers of Black PLwD

TL;DR

Black dementia caregivers often save hospice information for later use, which can influence end-of-life decisions.

Contribution

Introduces the concept of 'back pocketing' hospice information among Black dementia caregivers and its impact on decision-making.

Findings

Many caregivers save hospice information for future use, termed 'back pocketing'.

Credibility concerns and future decision-making needs drive the 'back pocketing' behavior.

Stored information helped one caregiver secure a dementia diagnosis for their loved one.

Abstract

Despite the benefits associated with hospice (e.g., improved quality of life at end-of-life), Black people living with dementia (PLwD) are less likely to utilize hospice services compared to non-Hispanic White persons. Exposure to hospice information may impact end-of-life decision-making for Black PLwD. This qualitative descriptive study examined the sources and characteristics of hospice information among caregivers and its influence on hospice decision-making. We employed semi-structured interviews with family caregivers (N = 25) of deceased Black PLwD. Longo’s Expanded Model guided the initial coding process. Thematic narrative analysis was applied to coded data through an iterative process. The study sample was predominantly female (72%), with an average age of 55.5 ± 14.7 years, and served as caregivers for 5.0 ± 4.0 years. Most participants (75%) enrolled their PLwD in hospice. When encountering dementia, hospice or other health-related information, some participants chose to “back pocket” it. “Back pocketing” refers to saving information for later consideration and possible action. Reasons for “back pocketing” information included: 1) deeming the information or source questionable in credibility, or 2) providing a knowledge bank to “pull from” for future decision-making in their caregiving role. One participant found “back pocket” information instrumental in securing a dementia diagnosis for their PLwD. This study refutes the notion that Black people do not receive or retain hospice information. It also emphasizes the importance of providing caregivers with credible hospice information and asking caregivers about “back pocketed” information. These findings may assist clinicians in determining when and through which avenues to provide hospice-related information.