ADVANCE CARE PLANNING FOR ALL
Exploring strategies to help older adults, including persons with cognitive impairments or dementia, plan end-of-life care.
ADVANCED CARE PLANNING (ACP) CHALLENGES & STRATEGIES
Advanced Care Planning (ACP) is a communication process that helps individuals to understand and share their personal values, life goals, and preferences for future medical care, helping to avoid costly, burdensome end-of-life care. Primary care is an important setting for advance care planning, especially for older adults, due to longstanding and trusted relationships with clinicians, the frequent periodicity of visits, and because older adults prefer their primary care clinician to initiate such conversations.
AN UNMET NEED: ACP FOR PATIENTS WITH DEMENTIA
Unfortunately, research has focused on increasing advance care planning in general primary care populations, while excluding persons with dementia who are less likely and able to participate in advance care conversations, appoint decision-makers or complete a living will. Strategies for this population must take into account special considerations, including (1) Capacity for Medical Decision-Making; (2) Family Involvement; and (3) Engagement and Communication.
BRIDGING THE GAP: RESOURCES & RESEARCH
Testing evidence-based interventions in the real world is challenging, yet necessary to ensure the interventions yield meaningful benefits for patients and align with the priorities, workflows and data systems of care organizations and settings. With support from the National Institute on Aging and in close partnership with Johns Hopkins Community Physicians and MedStar Health System, the Roger and Flo Lipitz Center to Advance Policy in Aging and Disability developed a series of ACP communications resources and strategies for use in primary care settings, to better reach and serve older adults, including those who are living with cognitive impairment or dementia. We then undertook two studies, SHARE and SHARING CHOICES, to measure their efficacy.
INTERVENTION COMPONENTS
Personal Communication
Letters were sent to patients introducing advance care planning as part of routine visits.
Planning Checklist
A guide for patient-family conversations aimed to spur discussion and foster alignment on advance care plans and family members’ roles.
Patient Portal Support
Clinicians helped connect family members, as desired by the patient, to the patient portal, legitimizing their role and enabling communication with the provider.
Trained Facilitators
Patients and families were connected to professionals trained in Respecting Choices, an evidence-based program that supports advance care planning conversations.
Provider Education
Training and other resources were provided to clinical staff to help them identify cognitive impairment and make appropriate referrals for support services and follow-up.
RESEARCH
The SHARE Study
The SHARE Study sought to understand the quality of patient and care partner communications about advanced care planning with their primary care providers to understand the effect of the intervention resources. The study surveyed patients and their care partners at 6, 12 and 24 months and sent bereavement surveys to care partners following patients’ deaths. A collection of audio-recorded advance care planning conversations added depth to the interpretation of SHARE findings.
KEY FINDINGS:
- 2 in 3 patients and caregiver partners had at least one conversation about advance care planning.
- Intervention care partners and patients reported greater readiness to engage in ACP at 6 and 12 months, respectively, and were more likely to report having completed selected key aspects of ACP.
- Intervention patients reported better quality of communication about end-of-life care at 12 months.
- Patients were more likely to report having named a surrogate decision-maker.
Older adults with cognitive impairment were able to participate in ACP conversations but engagement of care partners necessarily increased as they often assumed a translator-like role, providing context, reorienting patients to prior conversations and integrating supportive communication techniques such as repetition and mirroring to elicit patient participation and engagement.
SHARE At-A-Glance:
273
NUMBER OF PATIENTS AND CARE PARTNERS SURVEYED
80+
AGE OF ADULTS WITH MILD TO SEVERE COGNITIVE IMPAIRMENT
8
NUMBER OF DIFFERENT CLINICS
2 in 3
FRACTION OF RESPONDENTS WHO HAD AT LEAST ONE CONVERSATION ABOUT ADVANCED CARE PLANNING
References for The SHARE Study
Abshire Saylor, M., Hanna, V., Zhang, P., Thai, G. H., Green, C. M., Cagle, J. G., & Wolff, J. L. (2024). Advance care planning in adults ages
80 years and older with impaired cognition: Using actual conversations to examine best practices. Alzheimer’s & Dementia.
https://doi.org/10.1002/alz.14331
Cagle JG, Reiff JS, Smith A, et al. Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial.
J Pain Symptom Manage. 2024;68(2):180-189. doi:10.1016/j.jpainsymman.2024.05.002
Reiff, J. S., Cagle, J., Zhang, T., Roth, D. L., & Wolff, J. L. (2023). Fielding the quality of communication questionnaire to persons with
cognitive impairment and their family in primary care: A pilot study. Journal of the American Geriatrics Society, 71(1), 221–226.
https://doi.org/10.1111/jgs.18034
Wolff JL, Cagle J, Echavarria D, et al. Sharing Health Care Wishes in Primary Care (SHARE) among older adults with possible cognitive
impairment in primary care: Study protocol for a randomized controlled trial. Contemp Clin Trials. 2023;129:107208.
doi:10.1016/j.cct.2023.107208
Wolff, J. L., Cagle, J. G., Hanna, V., Dy, S. M., Echavarria, D., Giovannetti, E. R., Boyd, C. M., Saylor, M. A., Hussain, N., Reiff, J. S.,
Scerpella, D., Zhang, T., Sekhon, V. K., & Roth, D. L. (2024). Sharing health care wishes among older adults with cognitive impairment in
primary care: Results from a randomized controlled trial. Alzheimer’s & Dementia. https://doi.org/10.1002/alz.14210
The SHARING CHOICES Study
The SHARING CHOICES Study sought to understand if ACP resources and interventions could be successfully implemented in routine practice. In partnership with health system leaders, the trial allowed flexibility to accommodate system-specific staffing, workflows and priorities. These adaptations were essential in overcoming resource constraints faced by primary care practices and responding to the clinical context of each location. After embedding the intervention, the research team used electronic health records and regional health information exchange data to study whether patients had documented end-of-life preferences or received costly and burdensome care before death. The study also examined patient experiences, challenges, the effectiveness of facilitators, and the potential to sustain the program.
KEY FINDINGS:
- Documentation of end-of-life preferences increased two-fold but was attenuated in vulnerable subpopulations, including older patients, Black patients and persons with dementia.
- Additional attention and systems are needed to meet the needs of persons with dementia and care partners.
- Transitioning to remote modalities—a necessity during the COVID-19 outbreak in the midst of the study—inhibited accessibility for persons with dementia.
SHARING Choices At-A-Glance:
64,915
NUMBER OF PATIENTS
65+
AGE OF ADULTS OF ALL ABILITIES
19
NUMBER OF DIFFERENT CLINICS RANDOMLY SELECTED TO IMPLEMENT INTERVENTIONS
References for The SHARING CHOICES Study
Abshire Saylor, M., Scerpella, D., Chapin, M., Jajodia, A., Kadali, A., Colburn, J., Cotter, V., & Wolff, J. (2024). Developing archetypes for
key roles in a pragmatic trial: implementing human-centered design to promote advance care planning in primary care. In
Implementation Science Communications. doi:10.21203/rs.3.rs-4220004/v1
Colburn JL, Scerpella DL, Chapin M, et al. SHARING Choices: Lessons Learned from a Primary-Care Focused Advance Care Planning
Intervention. J Pain Symptom Manage. 2023;66(2):e255-e264. doi:10.1016/j.jpainsymman.2023.04.014
Cotter, V. T., Sloan, D. H., Scerpella, D. L., Smith, K. M., Abshire Saylor, M., & Wolff, J. L. (2024). Feasibility of Using Simulation to Evaluate
Implementation Fidelity in an Advance Care Planning Pragmatic Trial. American Journal of Hospice and Palliative Medicine®.
doi:10.1177/10499091241282087
Dy SM, Scerpella DL, Hanna V, et al. Qualitative evaluation of the SHARING Choices trial of primary care advance care planning for
adults with and without dementia. J Am Geriatr Soc. 2024;72(11):3413-3426. doi:10.1111/jgs.19154
Dy SM, Scerpella DL, Cotter V, et al. SHARING Choices: Design and rationale for a pragmatic trial of an advance care planning
intervention for older adults with and without dementia in primary care. Contemp Clin Trials. 2022;119:106818.
doi:10.1016/j.cct.2022.106818
Smith, K. M., Scerpella, D., Guo, A., Hussain, N., Colburn, J. L., Cotter, V. T., Aufill, J., Dy, S. M., & Wolff, J. L. (2022). 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. Journal of Primary Care & Community Health, 13.
doi:10.1177/21501319221137251
Wolff, J. L., Scerpella, D., Cockey, K., Hussain, N., Funkhouser, T., Echavarria, D., Aufill, J., Guo, A., Sloan, D. H., Dy, S. M., & Smith, K. M.
(2021). 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. American Journal of Hospice and Palliative Medicine®, 38(11), 1314–1321.
doi:10.1177/1049909120978771
Wolff, J. L., Scerpella, D., Giovannetti, E. R., Roth, D. L., Hanna, V., Hussain, N., Colburn, J. L., Saylor, M. A., Boyd, C. M., Cotter, V.,
McGuire, M., Rawlinson, C., Sloan, D. H., Richards, T. M., Walker, K., Smith, K. M., Dy, S. M., Anderson, R., Cockey, K., … Zhang, T. (2024).
Advance Care Planning, End-of-Life Preferences, and Burdensome Care. JAMA Internal Medicine.
doi:10.1001/jamainternmed.2024.6215
ACKNOWLEDGEMENTS: National Institute on Aging R01AG058671; R33AG061882
POLICY, PRACTICE & SUSTAINABILITY
Planning for future medical decision-making is multifaceted and highly personal. Findings from SHARE and SHARING Choices underscore the complexity of advance care planning in the primary care context, particularly for populations with heightened vulnerability, such as persons with cognitive impairment and dementia, but they raise very different implications for policy, practice, and sustainability.
Key recommendations from studies include:
Recommendations for health systems and clinicians
- Educate staff on opportunities for early detection of cognitive impairment and referral options.
- Utilize the Medicare Annual Wellness Visit and Cognitive Care Planning Visit to provide reimbursable cognitive screening, assessment and care planning, including advance care planning.
- Integrate care partners into primary care settings and communications, providing easy access to patient portals.
- Reinforce the benefit of understanding older adults’ values and creating a shared framework for future care decisions.
- Hold structured, formal conversations with patients and care partners about ACP.
- Be aware that patient and care partner priorities may differ, while care partners’ efforts to support and protect patients living with dementia can both clarify and mask staff’s understanding of cognitive and behavioral challenges.
- Provide support and resources to support ACP for older adults, including those with cognitive impairments, i.e. a planning checklist, access to the patient portal and trained facilitators.
- Utilize learning health system principles and consumer health information technology to embed best practices for caring for persons with cognitive impairments.
- Remember that advanced care planning for persons with complex medical and social histories is necessary and possible with tailored, efficient and scalable health system strategies.
Recommendations patients and Care Partners
- Integrate care partners into primary care visits and communications.
- Secure care partner access to patient portals.
- Utilize an advance care planning checklist.
- Hold structured, formal conversations between patient, care partner and primary care physician to ensure shared understanding of patient and care partner needs and plans.
- Create a shared framework for future care decisions based on patients’ values.
STUDY TEAM
Johns Hopkins UniversityJennifer L. Wolff (PI SHARE, MPI SHARING Choices) Sydney Dy (MPI SHARING Choices) Jessica Colburn Valerie Cotter Diane Echavarria Tara Funkhouser Valecia Hanna Naaz Hussain Maura McGuire Karyn Nicholson Christine Rawlinson Jenni Reiff Tom Richards David Roth Martha Abshire Saylor Vishaldeep Kaur Sekhon Danny Scerpella Danetta Sloan Talan Zhang | MedStar Health SystemRyan Anderson Kimberly Cockey Erin R. Giovanetti Sri Rebala Neha Sharma Kelly M. Smith Kathryn Walker
University of Maryland School of Social WorkJohn Cagle Peiyuan Zhang |