SHARING Choices: Lessons Learned from a Primary-Care Focused Advance Care Planning Intervention

Colburn, Jessica L.; Scerpella, Danny; Chapin, Margo; Walker, Kathryn; Dy, Sydney M.; Abshire, Martha; Sharma, Neha; Rebala, Sri; Anderson, Ryan E.; McGuire, Maura; Hussain, Naaz; Rawlinson, Christine; Cotter, Valerie T.; Cockey, Kimberly; Wolff, Jennifer L.; Smith, Kelly M.; Roth, David L.; Nicholson, Karyn Lee Carlson; Giovannetti, Erin R.; Sancho, Marcella B.; Echavarria, Diane; Boyd, Cynthia M.

doi:10.1016/j.jpainsymman.2023.04.014

Cited by 4 publications

(2 citation statements)

References 32 publications

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“…SHARING Choices implementation involved extensive shareholder engagement, pilot work and model development within partner systems; the study and intervention protocol have been detailed elsewhere. 16,17 The decision to develop archetypes was motivated by re ections at the mid-point of the trial delivery and the perceived value of human-centered design principles 6 to improve our understanding of observed processes and outcomes.…”

Section: Sharing Choicesmentioning

confidence: 99%

“…[20][21][22][23] In SHARING Choices, each clinic identi ed a primary care champion who was responsible for connecting research staff with clinic staff and leaders and guiding processes and work ows. 16,17 This role was selected for archetype development based on our observation that champions were having variable success in integrating SHARING Choices into their primary care practices. We wanted to learn from these successes and challenges without directly identifying individuals.…”

Section: Examples Using Sharing Choicesmentioning

confidence: 99%

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Developing archetypes for key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care

Saylor,

Scerpella,

Chapin

et al. 2024

Preprint

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Background: Archetypes are representations of a group of people with shared behaviors, attitudes, and characteristics. The design and use of archetypes have potential application to increase partnership and support when embedding and scaling interventions but methodological approaches have not been developed. Objective: To describe the methodology of designing archetypes for use in a pragmatic trial of advance care planning in the primary care context, SHARING Choices ((NCT04819191). We present resulting archetypes representing three key roles (primary care champion, advance care planning facilitator, and patient) in our pragmatic trial. Methods: Our process for developing archetypes involved 4 steps: 1) Identify roles for archetype development, 2) Identify Shareholders and Data Sources for Archetype Development, 3) Generate unique archetypes and their distinguishing traits, and 4) Iteratively refine archetypes through exposure, scrutiny, and shareholder input. We also developed a process map to communicate our methodology. Results: We created 6 distinct archetypes for the primary care champion role, 5 archetypes for the advance care planning facilitator role and 6 archetypes for the patient role. For each archetype we described strengths, challenges, prevailing emotions, and successful approaches to collaboration (e.g., “what works for me”). Unique opportunities for synergy between archetypes (such as with facilitator and champion) and potential challenges between archetypes (such as for facilitator and patient) suggest ways to improve training and support of key roles. Discussion: Our process for creating archetypes for use in implementation research was iterative and informative in discussion of implementation with shareholders. We expect this methodology to be useful for anticipating and analyzing many aspects of implementation.

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Section: Sharing Choicesmentioning

confidence: 99%

Section: Examples Using Sharing Choicesmentioning

confidence: 99%

Developing archetypes for key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care

Saylor,

Scerpella,

Chapin

et al. 2024

Preprint

Self Cite

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Advance Care Planning, End-of-Life Preferences, and Burdensome Care

Wolff,

Scerpella,

Giovannetti

et al. 2024

JAMA Intern Med

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ImportancePrimary care is a key setting for advance care planning (ACP).ObjectiveTo test the effects of a multicomponent primary care–based ACP intervention (SHARING Choices) on documented end-of-life preferences and potentially burdensome care at end of life.Design, Setting, and ParticipantsThis pragmatic cluster randomized clinical trial in primary care practices from 2 health systems was conducted between March 2021 and April 2022. Adults 65 years and older with a scheduled in-person or telehealth visit with clinicians from participating practices were eligible for inclusion.InterventionsThe treatment protocol encompassed an introductory letter from the clinic, access to a designated facilitator trained in ACP, a person-family agenda-setting checklist, shared access to the patient portal, a mailed advance directive, and print education. The control protocol encompassed usual care.Main Outcomes and MeasuresPrimary outcomes included (1) new electronic health record–documented end-of-life preferences (advance directive or medical orders for life-sustaining treatment) at 12 months among those without documentation at baseline and (2) receipt of potentially burdensome care within 6 months of death among a subsample of Maryland residents with serious illness who died within 18 months of study entry from health information exchange data.ResultsThere were 19 practices in the intervention arm and 32 practices in the control arm. The study included 22 949 patients in the intervention group (13 575 women [59.2%]; mean [SD] age, 73.9 [7.2] years; 1674 [7.3%] with diagnosed dementia) and 41 966 in the control group (25 057 women [59.7%]; mean [SD] age, 74.0 [7.1] years; 3223 [7.9%] with diagnosed dementia). A total of 17 907 patients (27.6%) were Black, 1373 (2.1%) were Hispanic, 40 345 (62.2%) were White, and 5290 (8.2%) were another race (including American Indian or Alaska Native, Asian, and Native Hawaiian or Other Pacific Islander, and missing race). Grant-funded facilitators initiated 17 931 outreach attempts by phone (13 963 [77.9%]) and through the patient portal (3968 [22.1%]) to patients from intervention practices, and 1181 engaged in facilitator-led ACP conversations. New end-of-life preferences were documented for 2190 of 18 314 patients in the intervention arm (12.0%) and 2130 of 32 321 in the control arm (6.6%). This treatment effect was significant for the overall cohort (adjusted odds ratio, 2.15; 95% CI, 2.02-2.30) and present but attenuated for Black patients, those 75 years and older, and those diagnosed dementia. Among 1498 Maryland resident decedents, potentially burdensome care was higher in the intervention group (150 of 521 [28.8%] vs 204 of 977 [20.9%]; adjusted odds ratio, 1.40; 95% CI, 1.08-1.81).Conclusions and RelevanceIn this pragmatic cluster randomized clinical trial, the SHARING Choices intervention increased new documentation of end-of-life preferences but also increased potentially burdensome care at end of life. Mixed findings underscore the importance of comprehensive support for those with serious illness and prioritizing patient-relevant outcomes in ACP interventional research.Trial RegistrationClinicalTrials.gov Identifier: NCT04819191

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Optimizing Care Planning for Older Adults in Primary Care

Santoyo-Olsson,

Li,

Harrison

2024

JAMA Intern Med

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Advance care planning (ACP) is fundamentally a communication process involving patient, family, and clinician discussions about potential future care 1 that ideally prepares individuals and their surrogates for the difficult decisions that may arise at the end of life. In JAMA Internal Medicine, Wolff et al 2 present findings from a pragmatic randomized clinical trial (henceforth pragmatic trial) that investigates whether their multicomponent primary care-based intervention enhances ACP process and outcomes. They recruited 64 915 adults (including people with dementia) 65 years and older from 51 primary care practices within 2 mid-Atlantic health systems. Patients in the SHARING Choices (NCT04819191) intervention group received an introductory letter to ACP, an agenda-setting checklist for the patient and family, an advance directive with durable medical power of attorney and living will, access to a patient portal, and access to a grant-funded facilitator certified through the Respecting Choices ACP. Clinicians at the intervention sites also received education about dementia. Researchers evaluated new documentation of end-of-life preferences in the electronic health record (EHR) and potentially burdensome care at end-of-life as 2 primary outcomes. Newly documented ACP was observed in 12% of intervention participants vs 7% of controls with a significant treatment effect for the overall cohort; this effect was attenuated among participants identified in the EHR as Black race, 75 years or older, or having diagnosed dementia. Researchers also examined receipt of potentially burdensome care for the 1498 participants who died with serious illness within 18 months after study entry; surprisingly, rates were higher in the intervention (29%) vs control (21%) among people without dementia, but no treatment effects (intervention (20%) vs control (13%) were observed among people with dementia.Wolff et al 2 are to be commended for the rigor and detail in the design and execution of the pragmatic trial. They nearly doubled the rate of newly documented ACP, defined as completion of an advance directive or medical order for lifesustaining treatment. Integrating advance directives into EHRs enhances accessibility and usability in real-world settings. When advance directives are not readily available when making medical decisions, it becomes challenging to ensure preferences are honored.Critics argue that ACP interventions may not meaningfully change end-of-life care even if interventions increase documentation. 3 The mixed results of SHARING Choices reflect these complexities: documentation of preferences and potentially burdensome end-of-life care were higher in the intervention group. ACP may have helped patients and surrogates think deeply about treatment options and

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SHARING Choices: Lessons Learned from a Primary-Care Focused Advance Care Planning Intervention

Cited by 4 publications

References 32 publications

Developing archetypes for key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care

Developing archetypes for key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care

Advance Care Planning, End-of-Life Preferences, and Burdensome Care

Optimizing Care Planning for Older Adults in Primary Care

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