SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning of Older Adults With and Without Cognitive Impairment in the Primary Care Context

Abstract

Context: Few advance care planning (ACP) interventions proactively engage family or address the needs of older adults with and without cognitive impairment in the primary care context. Objectives: To pilot a multicomponent intervention involving: an introductory letter describing a new clinic initiative and inviting patients to complete a patient-family pre-visit agenda-setting checklist, share their electronic health information with family, and talk about their wishes for future care with a trained ACP facilitator (SHARING Choices). Methods: SHARING Choices was delivered to 40 patient-family dyads from 3 primary care clinics. Facilitators completed post-ACP reports. Patient and family participants completed baseline and 6-week surveys. Results: Patients were on average 75 years (range 65-90). Family were spouses (85.0%) or adult children (15.0%). At 6 weeks, nearly half of dyads participated in ACP conversations (n = 19) or used the agenda-setting checklist (n = 17), one-third (n = 13) registered family to access the patient’s portal account, and most (n = 28) provided the primary care team with a new or previously completed advance directive. Of 12 patients who screened positive for cognitive impairment, 9 completed ACP conversations and 10 provided the clinic with an advance directive. ACP engagement, measured on a 4-point scale, was comparatively lower at baseline and 6 weeks among family (3.05 and 3.19) than patients (3.56 and 3.54). Patients remarked that SHARING Choices clarified communication and preferences while family reported a better understanding of their role in ACP and communication. Conclusion: SHARING Choices was acceptable among older adults with and without cognitive impairment and may increase advance directive completion.

Perceived Barriers and Facilitators of Implementing a Multicomponent Intervention to Improve Communication With Older Adults With and Without Dementia (SHARING Choices) in Primary Care: A Qualitative Study

“…The details of the SHARING Choices intervention are outlined in Figure 1 . 37 As conceptualized, 30 , 38 front desk staff would identify patients 65 years or older with an upcoming visit from the EHR. The staff would then prepare a patient-facing postal mailing including a letter from the practice describing the program goals, orienting the patient to SHARING Choices, information on ACP and scheduling with the ACP facilitator, an agenda-setting checklist, a blank advance directive, and information on setting up shared portal access.…”

“…Patient and family dyads were recruited from primary care practices operated by our health systems partners. 30 Eligible patients were 65 years or older who regularly attended a medical visit with an adult family, friend, or unpaid caregiver (family). Patients were screened for cognitive impairment using a 6-item cognitive screening instrument.…”

“…Stakeholders provided verbal informed consent. Patient and family dyads were recruited from primary care practices operated by our health systems partners 30. Eligible patients were 65 years or older who regularly attended a medical visit with an adult family, friend, or unpaid caregiver (family).…”

“… 12 Individuals and families expect primary care practices to initiate ACP and provide information and referrals for dementia needs 27 , 28 but system factors including time, knowledge, and resources often inhibit these conversations from occurring. 29 To address this, we developed SHARING Choices, 30 a multi-component intervention that integrates simple communication strategies that have been demonstrated to be effective but have thus far been deployed in isolation of one another, including person-family agenda setting, 15 , 16 shared family access to the patient portal, and access to a trained ACP facilitator to support primary care clinicians in completing ACP. Here, we explore the barriers, facilitators, and refinements to SHARING Choices implementation within primary care practices.…”

Promoting Advance Care Planning for Persons with Dementia: Study Protocol for the LEAD (Life-Planning in Early Alzheimer’s and Other Dementias) Clinical Trial

“…Many existing tools guide patients and their families through the advance care planning process. However, the design of these tools is for use in specific healthcare settings, such as primary care [15,[48][49][50][51], nursing homes [14,[52][53][54][55][56], and hospitals [45,57,58]. Many require a third party to facilitate [50,51,59], are not theoretically developed or psychometrically validated [60][61][62], and are paperbased tools that do promote engagement in meaningful conversations [59,63,64].…”