Advance Care Planning Delivery Research Articles

Developments in Advance Care Planning in Australia: Potential Opportunities and Roadblocks for an Increasingly Digital World.

Australia is committed to looking at ways to modernize its healthcare delivery further by integrating digital health. Advance Care Planning (ACP) is an area of healthcare that would likely benefit from further digitalization. However, while greater integration of technology in the delivery of ACP could help improve practices and lead to increased uptake, the extent to which this is achievable will be influenced, in part, by current approaches to ACP regulation. This article canvasses recent developments and trends in Australian law relevant to ACP and reflects on how these developments may impact the further digitalization of ACP.

Proactive advance care planning conversations in general practice: a quality improvement project

Advance care planning (ACP) is a process of discussion, reflection and communication, enabling planning for future medical treatment. Despite evidence of benefits of ACP to patients, families and the healthcare...

Feasibility and acceptability of facilitated advance care planning in outpatient clinics: A qualitative study of health-care professionals experience.

This study sought to determine the feasibility and acceptability of a facilitated advance care planning (ACP) intervention implemented in outpatient clinics, as perceived by health-care professionals (HCPs). Data from seven focus groups (n = 27) and nine semi-structured interviews with HCPs recruited as part of a pragmatic, randomised controlled trial (RCT) were analysed using qualitative descriptive methodology. Components of the intervention included HCP education and training, tools to assist HCPs with patient selection, hardcopy information, and ACP documentation, and specialised nurse-facilitators to support HCPs to complete ACP conversations and documentation with patients and caregivers. Health-care professionals working in tertiary outpatient clinics perceived the facilitated ACP intervention as feasible and acceptable. Health-care professionals reported a high level of satisfaction with key elements of the intervention, including the specialised education and training, screening and assessment procedures and ongoing support from the nurse-facilitators. Health-care professionals reported this training and support increased their confidence and ACP knowledge, leading to more frequent ACP discussions with patients and their families. Health-care professionals noted their ability to conduct ACP screening and assessment in clinic was impeded by large clinical caseloads and patient-related factors (e.g., dementia diagnoses, and emotional distress). Additional barriers to ACP implementation identified by HCPs included poor collaboration, constrained time and clinical space, undefined roles and standardised recording procedures for HCPs. Facilitated ACP intervention in outpatient clinics is perceived by HCPs as feasible and acceptable. Addressing barriers and tailoring implementation strategies may improve the delivery of ACP as part of tertiary outpatient care.

Lay Health Workers' Perspectives on Delivery of Advance Care Planning and Symptom Screening Among Adults With Cancer: A Qualitative Study.

Advance care planning and symptom screening among patients with cancer require team-based approaches to ensure that these services are equitably and appropriately delivered. In several organizations across the United States, we trained and employed lay health workers (LHWs) to assist with delivering these services for patients with cancer. The aim of this study was to understand LHWs' views on delivering these services. We conducted semi-structured interviews with 22 LHWs in 6 US-based clinical cancer care settings in 4 large cities. We recorded, transcribed, and analyzed interviews using the constant comparative method of qualitative analysis. Participants noted the importance of their role in assisting with the delivery of advance care planning (ACP) and symptom screening services. Participants noted the importance of developing relationships with patients to engage openly in ACP and symptom screening discussions. Participants reported that ongoing training provided skills and empowered them to discuss sensitive issues with patients and their caregivers. Participants described challenges in their roles including communication with oncology providers and their own emotional well-being. Participants identified solutions to these challenges including formal opportunities for introduction with oncology clinicians and staff and grievance sessions with LHWs and other team members. LHWs from several organizations endorsed the importance of their roles in ensuring the delivery of ACP and proactive symptom screening. LHWs noted challenges and specific solutions to improve their effectiveness in delivering these important services to patients after their diagnosis of cancer.

Toward an Understanding of Advance Care Planning in Children With Medical Complexity.

Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC. We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis. Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition. Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.

Evaluating Diverse Methodologies and Interventions for Facilitating Advance Care Planning (ACP) Among Seriously Ill Patients: Lessons from Ongoing PCORI-funded ACP Trials (FR415)

•Describe diverse methodologies for implementing interventions to increase advance care planning for seriously ill patients in three PCORI-funded large, multi-site comparative effectiveness trials.•Describe real-world challenges of implementing and evaluating advance care planning interventions for seriously ill patients.•Engage in an interactive activity to identify barriers and solutions to implementing advance care planning in a variety of real-world clinical settings. PCORI recently funded three large, multi-site trials focused on advance care planning (ACP) among seriously ill patients. Each trial takes a unique methodologic approach including different ACP interventions, implementation strategies, and methods for measuring program success. Collectively these trials answer critical questions related to delivery of ACP in real-world settings including identifying the optimal mix of clinicians needed to engage in ACP, evaluating approaches for reducing disparities in ACP and associated outcomes, and understanding the intensity of ACP interventions needed to facilitate optimal patient and caregiver outcomes.•One study is evaluating two different implementation strategies for the Serious Illness Care Program (SICP): primary care clinician-focused versus multidisciplinary team focused, and will enroll over 1,000 patients from 42 primary care clinics in the U.S. and Canada.•A second study is comparing the effectiveness of two ACP interventions (Respecting Choices vs. Five Wishes) in reducing racial disparities in ACP and patient outcomes among 800 seriously ill older adults from 10 clinics in Southern U.S.•A third population-based study is comparing the effectiveness on multi-level outcomes of three ACP interventions that vary in intensity (advance directive alone; advance directive plus the Prepare For Your Care decision support website; advance directive plus PREPARE plus ACP health care navigator facilitation. This study will enroll 6,000 patients with serious illness from 50 primary care clinics in California. In this session, we will review and contrast the variety of ACP models and tools, including supporting evidence, being tested in these studies. We will also explore the different approaches to population selection, ACP implementation and evaluation, and stakeholder engagement taken in these studies. Participants will then be engaged in an interactive exercise to consider how the experience to date in these three trials could inform the implementation of ACP for their own clinics and health systems.

Implementing values-based advance care planning (ACP) in a community oncology network.

105 Background: Oncologists often embrace the concept of having discussions with patients regarding end-of-life care. Still, challenges remain with initiating these discussions early in the metastatic setting so that the full ACP process can be satisfied. A framework and infrastructure are needed to systematically initiate and promote the ACP process at a time when metastatic disease is identified and patients are better able to make thoughtful decisions regarding their future care. Methodology is needed for documenting and updating the ACP process within the patient’s health record. Methods: During a 15 month period, 32 independent sites of service within a nationwide community oncology network implemented an electronic health record (EHR)-based program for initiating ACP conversations with patients having a metastatic cancer diagnosis. Patients were identified for program engagement based on clinical criteria populated within the EHR. Identified patients received a brief introduction to ACP by the physician or other clinician and were encouraged to meet with a trained ACP Counselor to engage the full process. ACP Counselors provided guidance to the patient to discover and share personal values and goals for care. Values for care were documented within the EHR. Counselors provided appropriate patient education regarding code status and state-specific advance directives. At end-of-life, practices included hospice and death details within the EHR. Results: For metastatic patients (n = 29,389), ACP counseling was provided for 1,034 individuals (4%). Code status was visible in 3648 health records (12%) and patient values were included for 376 patients (1%). 2,206 patients (8%) transitioned to hospice care during the 14-month period. EHR-based infrastructure allowed for ongoing ACP visibility by the healthcare team. Conclusions: Use of an EHR-based ACP process demonstrates promising outcomes for realizing meaningful delivery of ACP. Essential components are patient identification early in the metastatic trajectory, assessment of patient values for care, thorough patient education regarding code status and advance directive documents, and full visibility of the ACP process within the health record.

Patient and provider perceptions of advance care planning using electronic health record patient portals

The electronic health record (EHR) and EHR-tethered patient portals provide innovative opportunities for patient-provider advance care planning (ACP) communication. Development of patient-centred ACP tools for EHR-tethered patient portals requires investigation...

Commentary

In the last 20 years, progress has been made to develop resources for advance care planning (ACP). Several ACP delivery tools have demonstrated progress, but more are needed to improve ACP delivery systems. Providers continue to indicate that increasing patient volume, increasing patient complexity, and an increasing paperwork burden have adversely affected quality ACP delivery. An increasing and ubiquitous use of health information technology, such as electronic health records and electronic health record-tethered patient portals, affords opportunities for innovation to streamline communication methods between providers and patients. In a medical culture that provides only limited time for physician and patient interactions, physician-patient communication using electronic health record-tethered patient portals may provide a time-efficient, low-cost mechanism for effective ACP.