The care planning umbrella: The evolution of advance care planning

Advance care planning (ACP) was initially narrowly defined as documentation of life-sustaining treatment (LST). One initial goal was to curb unwanted LSTs and costs.1 Yet, a focus solely on legal documentation of LST preferences has resulted in mixed data on goal-concordant care and healthcare utilization.2-4 Fortunately, the conceptualization of ACP continues to evolve, and is now widely recognized as a process of preparing patients (people) and surrogate decision-makers for communication and medical decision-making.5, 6 This process involves a complex array of patient, surrogate, and clinician behaviors, health systems workflows, interventions, communities, and policy. ACP is rooted in what quality of life means to people.4, 5, 7 However, antiquated narrow definitions of ACP as a one-time checkbox or code status persist, resulting in heterogeneous research, clinical, and policy initiatives.2, 4 To address this heterogeneity, a modified Delphi panel defined ACP in 2017 as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care.”7 As the field has evolved, this definition focused on “future decisions” has proven to be too narrow as it does not include the preparation of patients and surrogates for decision-making over the life course or address public perceptions of ACP.8-10 The use of non-standardized and potentially inappropriate ACP outcomes in research also makes it difficult to evaluate ACP's effectiveness.4, 11 Goal-concordant care has been considered the “gold standard,” but there is a lack of validated or standardized measures.12-15 Because patient preferences may change, reliance on retrospective chart review to assess goal concordance may be inaccurate,13, 14 and there is a growing consensus that surrogate outcomes should be one key focus of ACP research.6 Additionally, ACP is unlikely to affect some outcomes such as quality of life, which may be impacted by other factors such as symptom burden, available support, and so forth, or healthcare utilization, which is not patient-centered and affected by lack of healthcare access, systemic injustice, and other issues.12, 16 Furthermore, the unique needs of historically marginalized populations are not well represented in prior definitions and outcomes identification. Rates of ACP are much lower (<20%) among racially or ethnically minoritized populations and those with limited health literacy.17-19 Disparities in ACP also persist for lesbian, gay, bisexual, transgender, queer, intersexual, asexual, homeless, and incarcerated populations.20, 21 Reasons may include lack of access to healthcare, experiential discrimination, well-founded mistrust,22, 23 and culturally diverse views on autonomy and decision-making,24, 25 making it preferable for many to begin care planning discussions in their communities. Diverse communities, as well as interdisciplinary clinicians and community-based experts, have not been included in prior efforts to define ACP and ACP outcomes. We propose a new framework that reflects the updated focus on preparation for communication and medical decision-making and conceptualizes ACP as part of the continuum of care planning. The overarching construct under the “Care Planning Umbrella” focuses on preparation for communication and medical decision-making,5 with quality of life and what brings meaning and purpose as the fundamental cornerstone. Underneath this broader umbrella are multiple steps, behaviors, people, clinical and community workflows, and decisions—some of which are in-the-moment and some in advance. Care planning is shaped by the person's (or surrogate's) perceptions of quality of life; understanding that these constructs are dynamic and evolve over time.28 It is also shaped by an individual's readiness, preferences for control over decision-making, illness understanding, prognostic awareness, and views of acceptable/unacceptable tradeoffs.5 All care planning is also influenced by family and caregiver support, community social norms, accessible resources, and current policy. The Care Planning Umbrella also spans the life course as people move between healthy/chronic illness, serious illness, and the end of life. They face different types of decisions (e.g., diabetes medication regimen for chronically ill, chemotherapy for seriously ill, hospice at end of life), and receive care in different settings (e.g., community, outpatient, acute care, long-term care, hospice).5, 29 Care planning must be tailored to the individual's life course, the decisions they are facing, and based on what quality of life means to the person at that time. For example, although surrogate designation and the integration of quality of life into medical decision-making is appropriate at every life stage, the appropriateness of integrating prognostic awareness and tradeoffs will vary (Figure 1).30, 31 At all life stages, some decisions may be in-the-moment (e.g., diabetes treatment, chemotherapy, end-of-life procedures) and some may be in advance (e.g., designation of a surrogate, care setting preferences). Over the life course, the lines between in-the-moment and advanced decisions may be fluid.3, 30, 31 Furthermore, some people, even early in the life course, may have strong and enduring preferences about their future medical care based on personal experiences and beliefs. Those individuals should be given the opportunity to discuss and document those preferences while educating them and their surrogate decision-makers that their preferences may change over time and should be revisited. The onus is on our field to disentangle the complexity of ACP (i.e., care planning) as patients and caregivers desire ACP and studies show ACP decreases surrogate distress.4 Based on recent consensus, more clinically meaningful outcomes from the patient and caregiver perspective may include surrogate burden and distress; feeling heard and understood; and satisfaction with care, communication, and decision-making.4, 6 In addition, implementation science and human factors engineering can be used to help care planning achieve its next step in the evolutionary process. Implementation science offers tools to understand complex processes, including determining the strategies and outcomes that meet the needs of culturally diverse patients and their families.32 System-level strategic approaches that consider organizational and community factors are preferred over examination of individual components (e.g., individual interventions or clinicians).2, 4, 33-35 The recently updated Consolidated Framework for Implementation Research (CFIR) is a well-established framework for implementing evidence-based interventions in real-world settings.36, 37 CFIR provides a guide for systematically identifying implementation factors that determine whether ACP (i.e., care planning) programs or tools succeed or fail. CFIR also recognizes that barriers may arise at any level or setting and can be used to identify strategies to overcome barriers. CFIR consists of five, interrelated domains that can guide care planning research (see Table 1 and Supplemental figure [Appendix S1]): Outer Setting (e.g., cultural/social norms, systemic racism, policies and laws, health information exchanges, quality metrics, reimbursement, etc.); Inner Setting (e.g., healthcare system readiness and workflows, policies, incentives, EMR infrastructure); Individuals (e.g., disease trajectory; cultural backgrounds; experiential racism and mistrust influenced by Capacity, Opportunity, and Motivation (COM-B)38); Innovation (e.g., design for patients and caregivers: educational modalities; documentation; community navigators; community events, medical-legal partnerships, etc. and clinicians and staff: clinician training protocols; conversation guides; electronic medical record (EMR) templates, etc.); and Implementation Process39, 40 (e.g., degree to which there is collaboration across leadership, multidisciplinary teams, settings; organizational champions; clinician buy-in; process to identify appropriate populations; messaging and marketing, and quality improvement, etc.). Advance care planning (ACP) design: How assembled and presented For patients and caregivers: For clinicians and staff: Structural characteristics Relational Connections/Communication Culture Innovation recipient (e.g., patients, caregivers, clinicians): Based on the Capability, Opportunity, Motivation (COM-B) Model for Behavior Change Human factors engineering methods are applied to understand how people engage in complex processes to improve system design and outcomes and can play a role in understanding and improving care planning.41 Process mapping can be used to visualize relevant care planning workflows and tasks of diverse parties (e.g., interdisciplinary clinicians, patients, surrogates, community members, faith leaders, attorneys, etc.) using multiple, iterative steps. Integrating process mapping and the CFIR model can ensure a complete understanding of the systems and processes involved. Care planning will likely require multiple process maps to fully reflect the complexity of diverse parties, settings, patients' stage on the life course, and components and factors necessary for patient-centered care. Care planning implementation requires a broad range of community partners that extends well beyond the healthcare setting to where people live in their communities. As others have shown, community outreach and patient-or community-facing implementation strategies are needed, in addition to training clinicians for goals of care conversations.42 Future efforts to define care planning and appropriate outcomes will need to include representatives from diverse communities, interdisciplinary clinicians (e.g., nurses, social workers, chaplains, healthcare navigators) and other experts (e.g., community health workers, faith-based and community leaders, attorneys). ACP has evolved over the past several decades to a continuum of care planning focused on preparing people and their surrogate decision-makers for communication and medical decision-making, and it is still evolving. To get to the next level of ACP for clinical care and research, we must reconceptualize care planning as a holistic, ongoing process over the life course that includes both tailored in-the-moment and advanced decisions at every life stage. We suggest the need for a systems-level approach using evidenced-based methods of implementation science and human factors engineering and the inclusion of diverse communities and interdisciplinary experts to develop and evaluate processes to support the continuum of care planning in real-world settings. Concept and figures: Susan E. Hickman, Rebecca L. Sudore; Preparation of manuscript: Susan E. Hickman, Hillary D. Lum, Anne M Walling, April Savoy, Rebecca L. Sudore. Thank you to graphic artist Kaylee Stewart for helping us communicate our ideas visually. This work was unfunded. Dr. Sudore is funded in part by the National Institute on Aging, National Institutes of Health (K24AG054415). Dr. Savoy is supported by a Career Development Award from the National Institutes of Health (K01AG076971). The authors declare that there is no conflict of interest. This work was unfunded and the content is solely the responsibility of the authors. Appendix S1. Application of the consolidated framework for implementation research to advance care planning. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.