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Research

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During COVID-19, Outpatient Advance Care Planning Is Imperative: We Need All Hands on Deck   J Am Geriatr Soc, 2020

In this letter to the editor we describe simple steps and simple scripts that all clinicians, regardless of discipline, can use to introduce advance care planning during the COVID-19 pandemic.

Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial   JAMA Intern Med, 2018

The patient-facing PREPARE program and an easy-to-read advance directive, without clinician-level or system-level interventions, increased documentation of advance care planning and patient-reported engagement, with statistically higher gains for PREPARE. These tools may mitigate literacy and literacy language barriers to advance care planning, allow patients to begin planning on their own, and could substantially improve the process for diverse English-speaking and Spanish-speaking populations.


Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans A Randomized Clinical Trial.   JAMA Intern Med, 2017

Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources.


Empowering Older Adults to Discuss Advance Care Planning During Clinical Visits: The PREPARE Randomized Trial   J Am Geriatr Soc, 2020

The PREPARE program and easy‐to‐read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English‐ and Spanish‐speaking older adults.


Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings   Ann Fam Med, 2020

In this pragmatic, real-world study of 315 patients across 17 primary care and cancer clinics, implementation of the online PREPARE program increased advance care planning engagement.


A Novel Website to Prepare Diverse Older Adults for Decision Making and Advance Care Planning: A Pilot Study.   J Pain Symptom Manage, 2014

A new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change.


Improving Medical-Legal Advance Care Planning   J Pain Symptom Manage, 2020

This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of an interprofessional panel of medical and legal experts, and recommendations for future medical-legal collaboration


Preparing Older Adults with Serious Illness to Formulate Their Goals for Medical Care in the Emergency Department.   J Palliat Med, 2017

PREPARE has the potential to engage older adults who are not acutely ill in ACP during their ED visits.


Evaluation of an Advance Care Planning Web-based Resource: Applicability for Cancer Treatment Patients.   Support Care Cancer, 2018

Results indicated that PREPARE is a reflective, capacity-building ACP resource that was acceptable, applicable, and understandable for use in oncology. These findings offer direction for both research and practice.

An Advance Directive Redesigned to Meet the Literacy Level of Most Adults: A Randomized Trial.   Patient Educ Couns, 2007

The redesigned advance directive was rated more acceptable and useful for advance care planning and was preferred over a standard form. It also resulted in higher six-month completion rates.


Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial   JAMA Intern Med, 2017

The patient-facing PREPARE program and an easy-to-read advance directive, without clinician-level or system-level interventions, increased documentation of advance care planning and patient-reported engagement, with statistically higher gains for PREPARE. These tools may mitigate literacy and literacy language barriers to advance care planning, allow patients to begin planning on their own, and could substantially improve the process for diverse English-speaking and Spanish-speaking populations.


Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans A Randomized Clinical Trial.   JAMA Intern Med, 2017

Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources.


Lost in translation: the unintended consequences of advance directive law on clinical care.   Ann Intern Med, 2011

Unintended negative consequences of advance directive legal restrictions may prevent all patients, and particularly vulnerable patients, from making and communicating their end-of-life wishes and having them honored. These restrictions have rendered advance directives less clinically useful. Recommendations include improving readability, allowing oral advance directives, and eliminating witness or notary requirements.


Improving Medical-Legal Advance Care Planning   J Pain Symptom Manage, 2020

This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of an interprofessional panel of medical and legal experts, and recommendations for future medical-legal collaboration

Effectiveness of Advance Care Planning Group Visits Among Older Adults in Primary Care   J Am Geriatr Soc, 2020

ACP group visits, using PREPARE videos, increased ACP documentation and readiness to engage in ACP.


Feasibility of a Video-Based Advance Care Planning Website to Facilitate Group Visits among Diverse Adults from a Safety-Net Health System.   J Palliat Med, 2018

Using the PREPARE movie to facilitate ACP GVs for diverse adults in safety net, primary care settings is feasible and shows potential for increasing ACP engagement.


A Group Visit Initiative Improves Advance Care Planning Documentation among Older Adults in Primary Care.   J Am Board Fam Med, 2017

This ACP-GV intervention increased ACP documentation among patients with diverse reasons for participating. This is a patient-centered approach to ACP in primary care.


Advance Care Planning Meets Group Medical Visits: The Feasibility of Promoting Conversations.   Ann Fam Med, 2016

A group visit to facilitate discussions about advance care planning and increase patient engagement is feasible. This model warrants further evaluation for effectiveness in improving advance care planning outcomes for patients, clinicians, and the system.

A Toolkit for Community-Based, Medicaid-Funded Case Managers to Introduce Advance Care Planning to Frail, Older Adults: A Pilot Study   J Palliat Med, 2020

The ACP-Toolkit resulted in higher case manager confidence in facilitating ACP and client readiness to engage in ACP, and usability was high. A brief ACP-Toolkit may be a feasible solution to increase ACP engagement among frail, older adults receiving in-home care.


Supporting In-Home Caregivers in Symptom Assessment of Frail Older Adults With Serious Illness: A Pilot Study   J Palliat Med, 2020

The PREPARE Symptom Assessment (SA)-Toolkit resulted in decreased symptom burden among diverse older adults and higher caregiver self-efficacy in SA. The SA-Toolkit is acceptable and may help reduce suffering in frail, older patients.


Leveraging In-Home Supportive Services Programs to Engage People in Advance Care Planning: Input From Staff, Providers, and Client Stakeholders   J Palliat Med, 2019

This qualitative study showed that an ACP program is important and feasible for Medicaid-eligible, frail older adults being cared for by in-home supportive services (IHSS). Implementation suggestions by IHSS stakeholders include focusing on case managers rather than in-home caregivers to prevent conflict of interest; tailoring programs to clients' needs; creating educational programs for IHSS staff, clients, and community; and standardizing easy-to-use guides and procedures into IHSS workflows.


Symptom Assessment Solutions for In-Home Supportive Services and Diverse Older Adults: A Roadmap for Change   J Palliat Med, 2018

A symptom assessment program for Medicaid-funded, in-home support services (IHSS) programs is desired, needed, and feasible and can leverage the established IHSS infrastructure and relationships to assess symptoms in the home. Acknowledging consumer choice, developing appropriate tools and trainings for IHSS staff, and effective messaging of program goals can contribute to success.

Redefining the "planning" in advance care planning: preparing for end-of-life decision making.   Ann Intern Med, 2010

The purpose of this paper is to describe the problems with the traditional objective of advance care planning; provide an alternative objective that focuses on preparing patients and surrogates to make the best possible in-the-moment medical decisions; and outline practical steps that clinicians can take to achieve this new objective in the outpatient setting.


Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review   J Am Geriatr Soc, 2020

Scoping Review of high-quality ACP RCTs from the past decade (January 1, 2010, to March 3, 2020) show predominantly positive primary outcomes for all intervention types. Although some outcomes were mixed, outcomes concerning decreased surrogate distress were consistently positive. Recommendations for further research include tailoring interventions and outcomes for local contexts, to set appropriate expectations of ACP outcomes, and standardize across studies.


Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel   J Pain Symptom Manage, 2017

A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.


Outcomes that Define Successful Advance Care Planning: A Delphi Panel Consensus   J Pain Symptom Manage, 2018

A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly “care consistent with goals.”


Lost in translation: the unintended consequences of advance directive law on clinical care.   Ann Intern Med, 2011

Unintended negative consequences of advance directive legal restrictions may prevent all patients, and particularly vulnerable patients, from making and communicating their end-of-life wishes and having them honored. These restrictions have rendered advance directives less clinically useful. Recommendations include improving readability, allowing oral advance directives, and eliminating witness or notary requirements.


Can we agree to disagree?   JAMA, 2009

A narrative essay reflecting on a personal story that changed the way the author, a geriatrician and palliative care physician, talked with patients and families about advance care planning and leeway for decision makers.


Advance Care Planning Beyond Advance Directives: Perspectives from Patients and Surrogates.   J Pain Symptom Manage, 2013

Beyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.


Disregard of patients' preferences is a medical error: comment on "Failure to engage hospitalized elderly patients and their families in advance care planning".   JAMA Intern Med, 2013

A commentary discussng why we should view knowledge and documentation of patients' preferences for medical treatment in the medical record through the lens of patient safety.

Brief English and Spanish Survey Detects Change in Response to Advance Care Planning Interventions   J Pain Symptom Manage, 2019

Shorter versions of the ACP Engagement Survey were able to detect within-group and between-group changes comparable with the 82-item version and can be useful for efficiently and effectively measuring ACP engagement in research and clinical settings.


Measuring Advance Care Planning: Optimizing the Advance Care Planning Engagement Survey.   J Pain Symptom Manage, 2017

Shorter versions of the ACP Engagement Survey are valid, internally consistent, and able to detect change across a broad range of ACP behaviors for English and Spanish speakers. Shorter ACP Surveys can efficiently measure broad ACP behaviors in research and clinical settings.


Development and Validation of a Questionnaire to Detect Behavior Change in Multiple Advance Care Planning Behaviors.   PLoS One, 2013

A new Advance Care Planning Engagement Survey that measures behavior change (knowledge, contemplation, self-efficacy, and readiness) and multiple advance care planning actions demonstrates good reliability and validity. Further research is needed to assess whether survey scores improve in response to advance care planning interventions and whether scores are associated with receipt of care consistent with one's wishes.


Improving a Full Range of Advance Care Planning Behavior Change and Action Domains: The PREPARE Randomized Trial.   J Pain Symptom Manage, 2018

Both PREPARE plus an easy-to-read AD and an AD-only markedly increased ACP engagement in a full range of ACP behaviors, including discussions and documentation, and engagement was nearly 100% with PREPARE + AD. Future ACP studies should examine a full range of ACP behaviors beyond ADs and the impact of PREPARE and easy-to-read AD implementation on health care systems.


Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.   BMJ Open, 2016

The ACP Engagement Survey demonstrated feasibility and acceptability in outpatient settings but was less feasible and acceptable among hospitalised patients due to length. A shorter version may improve feasibility. Engagement in ACP was low to moderate.


Measuring Self-Efficacy and Readiness for Advance Care Planning in Chinese Older Adults   J Pain Symptom Manage, 2020

The Chinese readiness and self-efficacy subscales of the ACP Engagement Survey are valid and reliable tools for assessing the preparedness of the Chinese older adults for ACP.


Click here to get the PREPARE Advance Care Planning Engagement Survey.