Time for More Support? Stakeholder Engagement for a Long-Term Care Planning Dementia Decision Aid Prototype.

Clinical decision aids around long-term care can help support persons living with dementia (PLWD), family care partners, and healthcare providers navigate current and future care decisions. This study describes the iterative development of a long-term care planning dementia decision aid and explores care partner and geriatric providers' insights regarding its acceptability and usability. Using a convergent parallel mixed methods design, we gathered surveys and completed interviews with 11 care partners and 11 providers. The quantitative and qualitative data were then converged, resulting in four findings: (1) helpfulness of the decision aid in supporting future care planning; (2) versatility of the decision aid in practice; (3) preferences for structure and content of the decision aid; and (4) perceived shortcomings of the decision aid in decision making. Future work should continue to refine the decision aid, pilot implementation, and evaluate potential effects on decision making as part of dementia care.

End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic.

Background: Persons with dementia (PWD) and their caregivers are uniquely impacted by the COVID-19 pandemic, including higher risk of mortality for PWD. Objectives: To describe the context and circumstances of deaths of PWD within a dementia support program during the COVID-19 pandemic. Design: Retrospective data collection of PWD deaths between March 1, 2020 and February 28, 2021. Setting/Subjects: Decedents enrolled in Care Ecosystem, a multidisciplinary team model for dementia care at University of California San Francisco, Ochsner Health, and UCHealth. Measurements: Using mixed methods, we analyzed data using descriptive measures and team-based thematic analysis to understand the end-of-life (EOL) experience of PWD-caregiver dyads. Results: Twenty-nine PWD died across three sites. Almost half (45%) were between ages 70-79 and 12 (41%) were women. Eighteen (62%) died at a private residence; two died in the hospital. Hospice was involved for 22 (76%) patients. There were known causes of death for 15 (53%) patients. Only two deaths were directly related to COVID-19 infection. Social isolation was perceived to have a high or very high impact for 12 (41%) decedents. Four qualitative themes were identified: (1) isolation due to the pandemic, (2) changes in use of dementia supports and resources, (3) impact on goals of care decisions, and (4) communication challenges for EOL care coordination. Conclusion: Among PWD and caregivers enrolled in a dementia support program, the COVID-19 pandemic had direct and indirect influences on mortality and EOL experiences of PWD. Caregivers' experiences of caring, decision making, and bereavement were also affected.

Living With Dementia: Care Partner Needs and Outcomes of a Dementia Support Program in Primary Care.

To address the need for collaborative approaches to managing dementia in primary care, we implemented the Living with Dementia (LWD) program in a geriatric primary care clinic. This study evaluated the impact of short (≤6 months) and longer-term (7+ months) participation in LWD on care partner outcomes (i.e., self-efficacy, depression, and burden) using t-tests and examined dementia support topics discussed with care partners through the intervention using deductive content analysis. Across 20 months analyzed, 57 dyads participated in the LWD program. Short and longer-term LWD participation indicated a significant increase in self-efficacy with small effect sizes; no changes were observed in depression or burden. Dementia support topics most frequently discussed with care partners focused on care partner well-being, behavior management, and offering referrals. This early evaluation suggests a collaborative care program integrated into primary care can address needs related to caring for persons with dementia and may improve care partner self-efficacy.

Implementation of Pharmacist Reviews to Screen for Potentially Inappropriate Medications in Patients With Cognitive Impairment.

Objective: To describe two pharmacist-led initiatives aimed to reduce potentially inappropriate medication (PIM) use in community-dwelling patients with dementia or cognitive impairment. Design: Retrospective, descriptive analysis of two clinical initiatives. Setting: Academic geriatric primary care clinics. Participants: Patients were included if they received a Memory Clinic pharmacist review May 1, 2017, to December 31, 2019, or a Living with Dementia (LWD) program pharmacist review November 15, 2018 to December 31, 2019 with provider follow-up within 6 months. Interventions: Both initiatives involved medication review by a clinical pharmacist to identify and make recommendations regarding medications that may contribute to cognitive impairment. The Memory Clinic served patients with concerns of cognitive impairment; whereas, the LWD program enrolled patients with an established diagnosis of dementia. Main Outcome Measure: Number of PIMs that could negatively impact cognition within each cohort. Additionally, 6-month implementation rates were analyzed for actionable pharmacist recommendations. RESULTS: Memory Clinic patients (n = 110) were taking an average of 2.4 PIMs; whereas, LWD patients (n = 40) were taking an average of 1.5 PIMs. Six-month implementation rates for all actionable pharmacist recommendations were 61.0% for the Memory Clinic and 42.4% for the LWD program. Specifically evaluating deprescribing recommendations, the 6-month PIM discontinuation rate was 63.6% for the Memory Clinic group and 60.0% for the LWD group. Conclusion: Pharmacists routinely identified PIMs during medication reviews, which led to successful recommendation implementation throughout multiple stages of cognitive decline. Both programs will continue to be adapted to ensure maximal impact.

Virtual Reality-Based Music Therapy in Palliative Care: A Pilot Implementation Trial.

Background: Music therapy (MT) and virtual reality (VR) have shown favorable patient-reported outcomes during serious illness. Objectives: To evaluate implementation measures of feasibility, usability, and acceptability of a VR-based MT intervention. Design: A pilot implementation study of a two-day VR-MT intervention using mixed methods. Patients created a personalized soundtrack with a music therapist, and then paired the soundtrack with a 360° VR environment. Setting/Subjects: Hospitalized patients with palliative care needs. Results: Of 23 patients (ages 20-74 years, 52% women), 17 completed the intervention, including 39% during an intensive care unit stay. Participants scored usability above average. For satisfaction, 53% chose the highest rating. Most participants spoke favorably of VR-MT, describing pleasant emotional and physical responses. Participants provided feedback on length, frequency of use, VR options, and timing of delivery. Conclusion: This VR-MT intervention was feasible, usable, and acceptable for hospitalized palliative care patients. Further study will test VR-MT outcomes.

Advance Care Planning Among Users of a Patient Portal During the COVID-19 Pandemic: Retrospective Observational Study.

BACKGROUND: Advance care planning is the process of discussing health care treatment preferences based on patients' personal values, and it often involves the completion of advance directives. In the first months of 2020, a novel coronavirus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), began circulating widely in the American state of Colorado, leading to widespread diagnosis of coronavirus disease (COVID-19), hospitalizations, and deaths. In this context, the importance of technology-based, non-face-to-face methods to conduct advance care planning via patient portals has increased. OBJECTIVE: The aim of this study was to determine the rates of use of a web-based advance care planning tool through a health system-based electronic patient portal both before and in the early months of the COVID-19 pandemic. METHODS: In 2017, we implemented web-based tools through the patient portal of UCHealth's electronic health record (EHR) for patients to learn about advance care planning and complete an electronically signed medical durable power of attorney (MDPOA) to legally appoint a medical decision maker. Patients accessing the portal can complete and submit a legally valid MDPOA, which becomes part of their medical record. We collected data on the patients' date of MDPOA completion, use of advance care planning messaging, age, sex, and geographic location during the early phase of the COVID-19 pandemic (December 29, 2019, to May 30, 2020). RESULTS: Over a 5-month period that includes the early phase of the COVID-19 pandemic in Colorado, total monthly use of the advance care planning portal tool increased from 418 users in January to 1037 users in April and then decreased slightly to 815 users in May. The number of MDPOA forms submitted per week increased 2.4-fold after the stay-at-home order was issued in Colorado on March 26, 2020 (P<.001). The mean age of the advance care planning portal users was 47.7 years (SD 16.1), and 2206/3292 (67.0%) were female. Women were more likely than men to complete an MDPOA, particularly in younger age groups (P<.001). The primary use of the advance care planning portal tools was the completion of an MDPOA (3138/3292, 95.3%), compared to sending an electronic message (148/3292, 4.5%). Over 50% of patients who completed an MDPOA did not have a prior agent in the EHR. CONCLUSIONS: Use of a web-based patient portal to complete an MDPOA increased substantially during the first months of the COVID-19 pandemic in Colorado. There was an increase in advance care planning that corresponded with state government shelter-in-place orders as well as public health reports of increased numbers of COVID-19 cases and deaths. Patient portals are an important tool for providing advance care planning resources and documenting medical decision makers during the pandemic to ensure that medical treatment aligns with patient goals and values.

Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

BACKGROUND: Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis. METHODS: Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting. Sixty participants were interviewed (30 patients and 30 care partners) about needs related to future planning. Team-based thematic analysis was used to identify key themes. RESULTS: Many care partners and patients living with PD described a desire for information about what to expect and how to plan for the future. Participants posed multiple questions about PD progression and devised the metaphor of a "roadmap" as a guide for decision making and planning. When exploring the concept of a PD roadmap, five themes emerged: (I) desire for a comprehensive tool for future planning, such as a roadmap, (II) care partner preferences for specific future planning, (III) PD-related life changes as opportunity for future planning and decision-making, (IV) cues from family, peers, and medical professionals about "location" on the roadmap, and (V) opportunities and challenges to integrating a PD roadmap into patient-centered care. CONCLUSIONS: Patients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.

Use of an Ambulatory Patient Portal for Advance Care Planning Engagement.

BACKGROUND: Primary care clinics need sustainable, population-based approaches to engage patients in advance care planning (ACP). Patient portal-based ACP tools may provide an option for patient engagement. OBJECTIVE: To increase ACP outcomes by engaging older adults through portal-based ACP tools, including an electronic Medical Durable Power of Attorney (MDPOA) form. METHODS: Geriatric clinic pilot of a multi-modal population-based outreach strategy for portal-based ACP tools. Outreach was to patients (n = 105) who were 65 years and older with an active portal account, no cognitive impairment, and no MDPOA on file. Patients received a motivational message via the portal and, if not read within 2 weeks, a mailed postcard about the portal-based ACP tools. Primary outcome was composite of any ACP action at 1-year including 1) new advance directive (AD) in the electronic health record, 2) use of portal-based ACP tools, or 3) documented ACP discussion with a provider. RESULTS: Sixty-five older adults read the electronic message at 12 months. Seventeen (16%) engaged in at least 1 ACP action. Fourteen of 17 engaged by adding an AD to their record. More patients completed an AD on article or brought a previously completed AD to clinic, compared with choosing to complete an electronic MDPOA via the portal. CONCLUSIONS: Brief motivational messages about ACP via a patient portal is feasible and may increase ACP outcomes for older adults in primary care. Future studies should evaluate population-based portal outreach strategies in combination with team-based workflows to enhance patient engagement in ACP.

Framing advance care planning in Parkinson disease: Patient and care partner perspectives.

OBJECTIVE: Advance care planning (ACP) is a core quality measure in caring for individuals with Parkinson disease (PD) and there are no best practice standards for how to incorporate ACP into PD care. This study describes patient and care partner perspectives on ACP to inform a patient- and care partner-centered framework for clinical care. METHODS: This is a qualitative descriptive study of 30 patients with PD and 30 care partners within a multisite, randomized clinical trial of neuropalliative care compared to standard care. Participants were individually interviewed about perspectives on ACP, including prior and current experiences, barriers to ACP, and suggestions for integration into care. Interviews were analyzed using theme analysis to identify key themes. RESULTS: Four themes illustrate how patients and care partners perceive ACP as part of clinical care: (1) personal definitions of ACP vary in the context of PD; (2) patient, relationship, and health care system barriers exist to engaging in ACP; (3) care partners play an active role in ACP; (4) a palliative care approach positively influences ACP. Taken together, the themes support clinician initiation of ACP discussions and interdisciplinary approaches to help patients and care partners overcome barriers to ACP. CONCLUSIONS: ACP in PD may be influenced by patient and care partner perceptions and misperceptions, symptoms of PD (e.g., apathy, cognitive dysfunction, disease severity), and models of clinical care. Optimal engagement of patients with PD and care partners in ACP should proactively address misperceptions of ACP and utilize clinic teams and workflow routines to incorporate ACP into regular care.

Patient Perspectives on Advance Care Planning via a Patient Portal.

BACKGROUND: Patient portals can offer patients an opportunity to engage in the advance care planning (ACP) process outside of clinical visits. OBJECTIVE: To describe patient perspectives on use of patient portal-based ACP tools. DESIGN: Interviews with patients who used portal-based ACP tools. The tools included an electronic Medical Durable Power of Attorney (MDPOA) form to designate a medical decision maker, a patient-centered educational web page, online messaging, and patient access to completed advance directives stored in the electronic health record (EHR). SETTING: Regional health-care system with a common EHR. MEASUREMENTS: Semistructured interviews with purposefully sampled patients who used the ACP tools. Questions explored motivations for using the tools and perceptions about how the tools fit into ACP. Analysis followed a grounded hermeneutic editing approach. RESULTS: From 46 patients (mean age: 49, 63% female), 4 key themes emerged: (1) individualized explorations of the ACP tools, (2) personal initiation and engagement with ACP tools through the portal, (3) value of connecting ACP portal tools to clinical care, and (4) practicality of the ACP tools. Patients described benefits of communicating with health-care team members who referred them to online ACP tools, as well as having the electronic MDPOA form connected to clinical care. CONCLUSIONS: Patients considered the portal-based ACP tools to be practical and feasible to use within the scope of their own ACP experiences. Further study is needed to understand whether portal-based ACP tools increase the quality and quantity of ACP conversations and documentation that is available to inform medical decision-making.

Design and Implementation of Patient Portal-Based Advance Care Planning Tools.

BACKGROUND: Electronic health record-based portal tools may help patients engage in advance care planning (ACP). We designed and implemented portal-based ACP tools to enable patients to create a medical durable power of attorney (MDPOA). MEASURES: MDPOA documentation and System Usability Scale were assessed. INTERVENTION: Stakeholder-informed portal-based ACP tools include an electronic MDPOA form, patient educational webpage, online messaging, and patient access to completed advance directives. OUTCOMES: A total of 2814 patients used the tools over 15 months. Patients had a mean age 45 years (17-98 years) and 69% were women. Eighty-nine percent completed an MDPOA form, 2% called or sent online messages, and 8% viewed the MDPOA form but did not complete it. The tools were rated highly usable. CONCLUSIONS/LESSONS LEARNED: Patients demonstrated willingness to use the portal to complete an MDPOA and rated the new ACP tools as highly usable. Future work will optimize population-based outreach strategies to engage patients in ACP through the portal.

Perceptions of trained laypersons in end-of-life or advance care planning conversations: a qualitative meta-synthesis.

BACKGROUND: Laypersons including volunteers, community health navigators, or peer educators provide important support to individuals with serious illnesses in community or healthcare settings. The experiences of laypersons in communication with seriously ill peers is unknown. METHODS: We performed an ENTREQ-guided qualitative meta-synthesis. We conducted a systematic search of MEDLINE, PsycINFO, CINAHL, Cochrane Library, and AMED to include qualitative studies with data regarding communication and laypersons in advance care planning, palliative care, or end-of-life settings. Study quality was appraised using a standardized tool. The analysis identified key domains and associated themes relating specifically to laypersons' perspectives on communication. RESULTS: Of 877 articles, nine studies provided layperson quotations related to layperson-to-peer communication associated with advance care planning (n = 4) or end-of-life conversations (n = 5). The studies were conducted in United Kingdom (n = 4) or United States settings (n = 5). The synthesis of layperson perspectives yielded five main domains: 1) layperson-to-peer communication, focusing on the experience of talking with peers, 2) layperson-to-peer interpersonal interactions, focusing on the entire interaction between the layperson and peers, excluding communication-related issues, 3) personal impact on the layperson, 4) layperson contributions, and 5) layperson training. Laypersons described using specific communication skills including the ability to build rapport, discuss sensitive issues, listen and allow silence, and respond to emotions. CONCLUSIONS: Published studies described experiences of trained laypersons in conversations with peers related to advance care planning or end-of-life situations. Based on these layperson perspectives related to communication, programs should next evaluate the potential impact of laypersons in meaningful conversations.