Advance Care Planning Conversations Research Articles

Harnessing Natural Language Processing and High-Dimensional Clinical Notes to Detect Goals-of-Care and Surrogate-Designation Conversations.

Advance care planning, involving goals-of-care and surrogate-designation conversations, is crucial for patient-centered care. However, determining the optimal timing and participants for these conversations remains challenging. This study explored the frequency, timing, and predictors of documenting two advance care planning elements, goals-of-care and surrogate-designation conversations, in clinical notes for patients with advanced illness. In this retrospective observational study, we leveraged high-dimensional data and natural language processing (NLP) to analyze clinical notes and predict the presence or absence of advance care planning conversations. We included notes for patients treated at a Midwestern United States hospital who had advanced chronic conditions and eventually passed away. We manually labeled a gold-standard dataset (n = 913 notes) for the presence or absence of advance care planning conversations at the note level, achieving excellent inter-annotator agreement (90.5%). Training and testing four NLP models to detect goals-of-care and surrogate-designation conversations revealed that a transformer-based model (Bidirectional Encoder Representations from Transformers [BERT]) achieved the highest accuracy, with an F1 score of 93.6. We then deployed the BERT model to a high-dimensional corpus of 247,241 notes for 4,341 patients and detected goals-of-care and surrogate-designation conversations in the records of 85% and 60% of patients, respectively. Temporal analysis revealed that goals-of-care and surrogate-designation conversations were first documented at medians 28 and 8 days before death, respectively. Patient characteristics and referral to specialty palliative care emerged as significant factors associated with documenting these conversations. Our findings demonstrate the potential of NLP, particularly Transformer-based models like BERT, to accurately detect goals-of-care and surrogate-designation conversations in clinical narratives. This study identified significant temporal patterns, including late documentation, and patient characteristics associated with these conversations. It highlights the value of high-dimensional data in enhancing our understanding of advance care planning and offers insights for improving patient-centered care in clinical settings. Future research should explore the integration of these models into clinical workflows to facilitate timely and effective advance care planning discussions.

Advance Care Planning: A Retrospective Audit in a National Referral Center for Interstitial Lung Diseases.

Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP). To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF. A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed. The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns. The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient.

A Quality Improvement Initiative for Inpatient Advance Care Planning

The Centers for Medicare & Medicaid Services (CMS) implemented advance care planning (ACP) billing codes in 2016 to encourage practitioners to conduct and document ACP conversations, and included ACP as a quality metric in the CMS Bundled Payments for Care Improvement Initiative in 2018. Use of this billing code in the inpatient setting has not been studied. To determine whether a quality improvement intervention to increase inpatient ACP is effective in increasing ACP billing rates or changing hospital treatment plans or patient outcomes. This nationwide cohort study and difference-in-differences analyses compared changes in ACP billing, treatment, and outcomes in Medicare fee-for-service beneficiaries aged 65 years and older who were hospitalized and cared for by 3 different groups: practitioners employed by a national acute care staffing organization who underwent an ACP quality improvement intervention, nonintervention practitioners at the same hospital, and control group practitioners from other hospitals. Using data from the Master Beneficiary Summary File, acute care hospital stays for nonsurgical conditions were linked to Medicare enrollment, claims, and vital status data from 1-year preadmission to 1-year postadmission from 2015 to 2019. The ACP billing rates for each group were assessed for associations with 6 inpatient treatments and 4 outcomes. Data analyses were performed from January 2022 to December 2024. Billed ACP conversations, receipt of intensive care and life support (intensive care unit admission, gastrostomy tube placement, mechanical ventilation, tracheostomy), treatment limitations (newly initiated do-not-resuscitate orders) and outcomes (discharge to hospice, inpatient death, 30-day postadmission death, and 1-year postadmission death). The total study sample included 109 intervention hospitals, 1691 control hospitals, nearly 12 million Medicare fee-for-service beneficiaries aged 65 years and older, and 738 309 practitioners associated with admissions from 2016 to 2018. ACP billing rates increased more for the intervention (1.3% in preintervention to 14.0% in postintervention; P < .001) than for the nonintervention (same hospitals) and control groups (odds ratio [OR], 2.6; 95% CI, 1.7-4.1 intervention vs control). Increased ACP billing rates were significantly associated with decreased rates of inpatient death in the intervention group (OR, 0.95; 95% CI, 0.90-1.00) compared to the nonintervention (OR, 1.10; 95% CI, 1.04-1.17) and control groups (reference). All other associations were nonsignificant. This nationwide cohort study suggests that while the ACP quality initiative increased ACP billing, changes in clinical outcomes were inconsistent with the hypotheses. Further study is needed to address questions regarding confounding by unobserved measures of care quality.

Improving advance care planning outcomes through social work and provider collaboration.

55 Background: For many patients living with a life-limiting illness, the ability to have authority in their end-of-life (EOL) decision making is a foundational aspect in achieving a peaceful passing. Literature shows, however, that a low percentage of adults in the United States have completed advance directive documents or had discussions indicating their wishes for EOL care. With their unique communication and advocacy skills, licensed masters-prepared social workers (MSWs) are primed to play an active and effective role in Advance Care Planning (ACP) discussions with patients. The purpose of this study aimed to explore the extent to which MSWs in an oncology setting are harnessing these skills. Methods: An online survey was dispersed to social workers working in outpatient oncology clinics in The US Oncology Network. The survey reviewed the level of education, licensure status, involvement and comfort with ACP discussions, and factors that would aid increased engagement of these conversations. Results: 41 out of 75 social workers completed the survey. 95% of respondents were masters prepared (MSW) and licensed at the masters (27%) or clinical (73%) level. Of these MSWs, 95% are having ACP conversations with their patients and loved ones, and 87% are initiating these discussions independently. Although 64% report that they are getting referrals from physicians in their practice, almost half (49%) indicated they would like more support from physicians around ACP conversations with patients. Per respondent comments, a need was expressed for providers to help initiate and normalize ACP discussions. It was also indicated that MSWs do not believe providers fully understand MSWs ability to engage in these discussions. Interestingly, only 10% of MSWs are billing for ACP discussions, yet 46% indicated they would be interested in doing so. Conclusions: Our results indicate there is a gap between the work MSWs are doing in the ACP space and how providers are utilizing the MSW’s clinical expertise in this area. The use of MSWs in a cancer care setting can enhance patient self-determination and documentation of wishes for EOL, as well as support multidisciplinary care of the patient. Additional benefits could include improvement of ACP quality measures, increased revenue, and provider satisfaction in knowing these sensitive conversations are being addressed by a trusted member of the healthcare team.

AI-enabled ACP on inpatient oncology: Feasibility, acceptability and impact on workflow.

403 Background: Advance care planning (ACP) can help patients understand and share their long-term health goals and values, and in turn facilitate the delivery of medical care consistent with those goals and values. However, in a survey of Californians about attitudes towards death and dying, while almost 80% of respondents indicated that they would like to talk to their doctor about end-of-life care, only 7% had ever had a doctor bring up the subject. To address this problem, the Stanford inpatient oncology service implemented an AI-enabled workflow to facilitate timely identification of patients for ACP conversations before discharge. While the workflow implementation has thus far been successful, less is known of the human factors from patients and providers that influence the feasibility and acceptability of this workflow. Methods: To gather perspectives on the AI-enabled tool, we used qualitative research methods to conduct semi-structured interviews with 15 patients and 15 providers. Patients were over the age of 18 and had been recently admitted to the Stanford Inpatient Oncology Service. Providers were over the age of 18 and worked within the Stanford Inpatient Oncology Service in one of four roles: attending oncologist, advanced practice provider, clinical dietician, occupational therapist. Interviews were conducted virtually via Zoom, recorded and transcribed for subsequent thematic analysis. Once transcribed, interviews were qualitatively coded using an inductive approach. Results: Patients and providers affirm the positive potential for AI implementation in healthcare settings, but emphasize the necessity of maintaining human-centered models of care which prioritize strong interpersonal relationships. Providers observe relatively minimal impacts of the AI-enabled tool on existing advance care planning workflows/practices, but express optimism surrounding the implementation of AI tools in inpatient oncology more generally. Patients exhibit similar levels of optimism and a general openness toward AI applications in healthcare settings, but highlight the need for transparency and informed consent throughout the processes of AI development and implementation. Conclusions: This study provides novel insights on the impacts of AI-enabled workflows in inpatient oncology care, as well as patient and provider perspectives concerning the implementation of AI technology in healthcare more broadly. As AI is increasingly developed with clinical care applications in mind, these insights provide valuable foundations for successful implementation.

Perspectives of Nursing Home Staff in Advance Care Planning Conversations: Experiences from the APPROACHES Project

ObjectivesAdvance care planning (ACP) is considered a best practice in the nursing home setting; however, there is a lack of consistency in the training of nursing home staff and implementation of structured ACP programs. A qualitative study interviewing ACP specialists in nursing homes was conducted to understand the experience of staff engaged in Aligning Patient Preferences – a Role offering Alzheimer's patients, Caregivers, and Healthcare providers Education and Support (APPROACHES), an embedded pragmatic clinical trial to improve ACP. DesignQualitative interviews regarding ACP specialists’ experiences and perceived intervention impact. Setting and ParticipantsStaff of intervention-assigned nursing home facilities who completed a minimum of 10 ACP conversations with residents during APPROACHES program implementation. MethodsFourteen staff were interviewed. Interviews were transcribed and coded by the research team. ResultsThere were 21 codes identified that were then distilled into the following 5 themes: (1) experiences with the ACP specialist program, (2) engaging in ACP conversations, (3) considerations related to dementia, (4) benefits and challenges of ACP, and (5) involvement of multiple people in the ACP process. Participant responses suggested variability in experiences with the ACP specialist program and highlighted many aspects relevant to engaging in conversations with families and residents, particularly those living with dementia. Benefits of ACP, including relationship building and increased preparedness for changes in health status, were balanced with challenges related to sensitive conversation topics and logistical difficulties in scheduling ACP discussions. ACP specialists discussed the multiple roles that others played in the ACP process. Conclusions and ImplicationsFindings from this analysis provide insights into tailoring APPROACHES and other ACP programs for full-scale implementation in the nursing home setting. Nursing home staff experiences tailoring the program to fit their environments were reflective of the pragmatic nature of the ACP specialist program.

Family perspectives on and experiences with advance care planning in nursing homes: A thematic synthesis.

To synthesize family members' experiences and perspectives on advance care planning (ACP) in nursing homes. The thematic synthesis is reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement. A systematic search of the APA PsycINFO, CINAHL Plus, Embase and PubMed databases is initially conducted in October 2022, and the search is updated in January 2024. Qualitative studies that presented family members' quotes regarding advance care planning in nursing homes published in a peer-reviewed journal were included. Screening and data extraction were independently performed by two reviewers, and any discrepancies were resolved with the assistance of the third author. A total of 1027 articles were identified, and 23 articles were included in the full-text review. Subsequently, a total of 17 studies were ultimately included, and 127 quotes were extracted and analysed. The main findings were categorized into three themes: (1) invitation to conversation and care, (2) the resident's surrogate and (3) nurses. Considering the importance of family members' roles in ACP conversations in a nursing home setting, this study provided an in-depth understanding of family members' perceptions and experiences of ACP by synthesizing qualitative studies. Family members' lack of knowledge regarding the timing and pursuits of ACP was also identified. The findings of this study provide synthesized qualitative evidence of family members' perspectives on ACP, which can inform care and treatment in nursing homes. As this study synthesizes the experiences of family members in nursing homes about ACP, the findings of this study contribute to reflecting family members' experiences and providing evidence for nursing home healthcare professionals. This study reports the experiences of family members in ACP nursing homes. The findings of this study contribute to reflecting family members' experiences and building evidence for nursing home healthcare professionals.

Machine Learning for Targeted Advance Care Planning in Cancer Patients: A Quality Improvement Study

ContextPrognostication challenges contribute to delays in advance care planning (ACP) for patients with cancer near the end of life (EOL). ObjectivesExamine a quality improvement mortality prediction algorithm intervention's impact on ACP documentation and EOL care. MethodsWe implemented a validated mortality risk prediction machine learning model for solid malignancy patients admitted from the emergency department (ED) to a dedicated solid malignancy unit at Duke University Hospital. Clinicians received an email when a patient was identified as high-risk. We compared ACP documentation and EOL care outcomes before and after the notification intervention. We excluded patients with intensive care unit (ICU) admission in the first 24 hours. Comparisons involved chi-square/Fisher's exact tests and Wilcoxon rank sum tests; comparisons stratified by physician specialty employ Cochran-Mantel-Haenszel tests. ResultsPreintervention and postintervention cohorts comprised 88 and 77 patients, respectively. Most were White, non-Hispanic/Latino, and married. ACP conversations were documented for 2.3% of hospitalizations preintervention vs. 80.5% postintervention (P<0.001), and if the attending physician notified was a palliative care specialist (4.1% vs. 84.6%) or oncologist (0% vs. 76.3%) (P<0.001). There were no differences between groups in length of stay (LOS), hospice referral, code status change, ICU admissions or LOS, 30-day readmissions, 30-day ED visits, and inpatient and 30-day deaths. ConclusionIdentifying patients with cancer and high mortality risk via machine learning elicited a substantial increase in documented ACP conversations but did not impact EOL care. Our intervention showed promise in changing clinician behavior. Further integration of this model in clinical practice is ongoing.

The Sowers of Seeds: A Qualitative Analysis of the Role of Palliative Care Educators in Facilitating Goals-of-Care Conversations and Palliative Care Referrals.

Optimal care for seriously ill and older patients often involves advance care planning (ACP), goals-of-care (GOC) conversations, and specialty palliative care consultation, three sometimes overlapping, yet distinct practices. Insufficient staffing and investment in these areas have limited their availability. We explored the facilitators and barriers to successful implementation of the VIDEO-PCE trial. The intervention aimed to increase patient engagement in ACP, GOC, and by establishing Palliative Care Educators, a new clinical role integrated into existing hospital wards. This qualitative interview study employed a semi-structured interview guide tailored to the interviewee's clinical role. The interviews elicited perceptions of the facilitators and barriers to integration of palliative care educators (PCEs) into existing workflows. We developed deductive codes a priori and inductive codes as we coded interview transcripts. Medical/surgical floor clinical colleagues, palliative care team members, and PCEs from both participating sites were interviewed. Twenty-four individuals were interviewed (12 clinical staff of medical and surgical wards, seven palliative care team members, and five PCEs). Four themes were identified: (1) The work completed by the PCEs provided a foundation for future palliative care involvement; (2) Constituting the new role in practice required revision and creativity; (3) Communication was important to providing continuity of care; and (4) Establishing trust catalyzed the acceptance of the role. The creation and implementation of a new role within existing clinical workflows posed some challenges but were felt to relieve staff from some work burden and allow more patients to engage in ACP and GOC conversations. ClinicalTrials.gov Identifier: NCT04857060.

Advance care planning in the acute hospital: A qualitative analysis of terms and conditions

Advance care planning in the acute hospital: A qualitative analysis of terms and conditions Abstract: Background: Advance Care Planning (ACP) is an internationally established concept aimed to facilitate anticipatory care planning in the event of future inability to consent. In Germany, ACP is currently not regularly offered to patients in acute care hospitals. Aim: We aimed to identify preconditions for implementation of ACP in acute care hospitals in Germany through review of the international literature and expert interviews. Methods: A systematic literature search was carried out in the databases MEDLINE and CINAHL for internationally used strategies for implementing ACP in acute care hospitals. Consecutively, a guide for interviews with experts to evaluate the strategies was developed. Interviews were analyzed by qualitative content analysis according to Mayring. Results: Out of 13 included publications, 17 preconditions were identified and assigned to 16 categories after evaluation by experts. In international ACP programs, it was described how to proceed and organize the ACP conversation. German experts emphasized that appropriate preconditions, such as sufficient time resources and training, must be granted, whereas the literature search revealed the conversation process and organization as important determinants. Conclusions: The implementation of ACP programs is conceivable, but requires specific conditions as legal regulation and defining and structuring of the processes.

Advantages, barriers, and cues to advance care planning engagement in elderly patients with cancer and family members in Southern Thailand: a qualitative study

BackgroundOlder cancer patients are vulnerable to poorer health outcomes during cancer treatment. Although the Thai elderly had their own preferences towards future medical care and advance care planning (ACP) could help cancer patients make informed decisions, Thai physicians report a low ACP engagement rate. Thus, this study aimed to explore the perceptions of older cancer patients and their families towards ACP engagement.MethodWe used a qualitative approach to explore the perceptions of non-haematological cancer patients aged ≥ 60 years old and their primary caregivers. The study was conducted at the Oncology Radiotherapy Referral Center, Songklagarind Hospital in Southern Thailand. Semi-structured in-depth interviews were conducted with the patients and their caregivers. Thematic analysis was used to identify and analyze recurring patterns and themes of perceptions regarding ACP engagement within the interview transcripts.ResultsAmong the 138 families approached, 32 interviews were conducted. Three themes were found: (1) Advantageous opportunity: the patients believed ACP would help them realize their life values, and ensure that their preference would be respected; (2) contemplation and barriers to ACP: ACP is unfamiliar and unnecessary, might have low utility, worry patients and family members, take away optimism, would not be a proper activity for the patient at the current health situation; and (3) Cues for ACP initiation: perceived conformity with one’s religion, awareness of the current cancer state, having multiple comorbidity or experience suffering related with medical care, wishing not to burden family, having close family members, and trust in physicians.ConclusionACP engagement could be hindered or promoted by perceptions of older patients and/ or their family members, as well as the communication skills of the care providers. Care professionals who aim to initiate ACP should minimize the potential barriers, make the ACP benefits salient, and watch for cues indicating a propitious time to start the ACP conversation.

2254 Improving the quality and breadth of advance care planning discussions on gerontology wards in an acute London trust

Abstract Introduction Advance care planning (ACP) offers people the opportunity to plan their future care whilst they have capacity to do so and is supported by national guidance. Decisions regarding future care are more likely to be individualised and holistic when patients and their significant others are involved. This QI project aimed to address this by increasing the frequency of ACP discussions being offered and recorded on gerontology wards in an acute London Trust. Method A multi-professional steering group was established to improve ACP using PDSA methodology. A new ACP toolkit, training programme and electronic flowsheet (within the hospital’s patient record system) were implemented. ACP documentation quality was audited on gerontology wards pre and post implementation (over one to four months respectively). Data was compared using Pearson’s Chi-squared test. Results ACP flowsheets were completed by junior and senior doctors, and clinical nurse specialists in frailty and palliative medicine. The initial audit found disparity between documented topics of ACP conversations, with cardiopulmonary resuscitation recommendations being most discussed. Post implementation, 24 ACP flowsheets were reviewed, showing that more ACP topics were documented where these conversations were had; preferred place of death increased from 24% to 60% (p 0.011); treatment escalation plan increased from 41% to 75% (p 0.014); preferred place of care increased from 59% to 71% (p 0.066). Topics not showing significant improvement in documentation (despite inclusion in the flowsheet) were spiritual needs, information needs and prognostic discussion, broader social needs and what was most important to the patient. Conclusion The implementation of an electronic ACP flowsheet improved documented ACP conversations in some topics, guiding healthcare professionals to deliver care that aligns with peoples’ wishes and preferences. Documented conversations became easier to access, review and audit. Work is still needed to promote ACP conversations being centralised around what matters most to patients.

The Progression of End-of-Life Wishes and Concordance with End-of-Life Care: An Update.

Importance: Concordance between physician orders for life-sustaining treatment (POLST) preferences and treatment at end-of-life is an important outcome measure of providing patient-centered care. Objectives: We determine whether the COVID pandemic affected clinician ability to provide goal concordant care and replicate our previous report on care concordance and change in patient preferences over time with a larger sample size. We also investigate the quality of POLST completion to determine the number of documents completed with an advance care planning (ACP) conversation or a decision maker present. Methods: Chart abstraction via structured questionnaire of 796 randomly selected patients who died in 2020 with a POLST on file. Results: We found 99% concordance in the last setting of death between a patient's POLST preferences and the care they received. We confirm our previous finding that patients' wishes shift towards a preference for lower treatment intensity at end-of-life. We found that 82% of POLSTs were created in the context of an ACP conversation, 77% with a decision maker present. Conclusion: High levels of goal concordant care were maintained during the pandemic. Because patient wishes evolve over time, clinicians should be trained and supported to revisit care preferences across the illness trajectory.

Cross-disciplinary advance care planning in oncology and palliative care amidst a pandemic: a best practice implementation project.

Advance care planning (ACP) ensures that patients receive medical care aligned with their values, goals, and preferences, especially regarding end-of-life decisions in serious chronic illnesses. This project aimed to introduce and promote evidence-based ACP in oncology and palliative care at a midsized hospital near Berlin, Germany, during the COVID-19 pandemic. This project was guided by the JBI Evidence Implementation Framework and used a mixed methods audit cycle. A baseline audit was conducted using qualitative interviews and workshops with representatives from all the health care disciplines involved in oncology and palliative care at the hospital. The findings were compared with eight best practice recommendations. Targeted strategies aimed at the key stakeholders involved in ACP practice were then implemented. Finally, a semi-quantitative questionnaire was used in a follow-up audit with the same participants as in the baseline audit. The baseline audit revealed a high level of familiarity with the concept of ACP. However, there was a lack of a uniformly accepted definition and understanding of ACP among the health care professionals, leading to a lack of coordination in task distribution. The follow-up audit revealed improvements with regard to education and training in ACP (Criterion 1: 50% to 100%) and organizational support to facilitate ACP conversations (Criterion 3: 87.5% to 100%). Other audit criteria compliance rates remained unchanged. Clinical education and team-based process analysis can facilitate ACP implementation across disciplines in oncology and palliative care facilities. However, the project did not succeed in implementing lasting changes in clinical processes and best practice ACP due to the COVID-19 pandemic. Such an endeavor would demand considerable resources and time, both of which were constrained during the pandemic. http://links.lww.com/IJEBH/A236.

Experiences with implementing advance care planning (ACP-GP) in Belgian general practice in the context of a cluster RCT: a process evaluation using the RE-AIM framework

BackgroundGeneral practice is often recommended as an ideal setting to initiate advance care planning (ACP), but uptake of ACP in this setting is low. ACP-GP is a complex intervention to facilitate ACP for patients with chronic, life-limiting illness in Belgian general practice. It aims to increase patient ACP engagement and general practitioner (GP) ACP self-efficacy. In a cluster-randomized controlled trial, the intervention was not superior to control in increasing these outcomes. A parallel process evaluation aimed to enhance understanding of how the intervention was implemented, and which factors might have influenced trial results.MethodsWe conducted a mixed-methods process evaluation following the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework. Data sources include recruitment and implementation monitoring, questionnaires for patients and GPs, and semi-structured (focus group) interviews with patients and GPs. Questionnaire data were analyzed descriptively. Qualitative data were first analyzed inductively; themes were then assigned deductively to RE-AIM dimensions.ResultsThirty-five GPs and 95 patients were recruited to the trial; GP reach was low. Sixteen GPs and 46 patients provided questionnaire data at 3 months post-baseline; qualitative data were transcribed for 14 GPs and 11 patients. Adoption of intervention components was moderate to good, with the exception of the documentation template for GPs. Interviews revealed varying patient attitudes towards ACP, but patients nonetheless emphasized that conversations made them feel reassured. GPs especially valued a positive framing of ACP. When adopted, the intervention was well-implemented and participant satisfaction was high. However, intention for maintenance was moderate, with GPs raising questions of how to sustainably implement ACP conversations in the future.ConclusionsImplementing the complex ACP-GP intervention in general practice is feasible, and can be successful. However, the implementation process is challenging and the sustainability is suboptimal. Our findings will guide future research and recommendations for facilitating and implementing ACP in general practice.Trial registrationISRCTN12995230; prospectively registered on 19/06/2020.

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...

Effects of a communication skills training program to improve capacity to engage in advance care planning in caregivers of patients with malignant gliomas

Abstract Background: Family and friend caregivers play a critical role in advance care planning (ACP) discussions, which are difficult but necessary to carry out patients' goals of care. This role is particularly important among caregivers of patients with malignant gliomas (MGs), who are often tasked with quickly taking responsibility for healthcare communication. We developed and evaluated the feasibility, acceptability, and preliminary effects of a virtual communication skills training program to equip caregivers of patients with recurrent MGs with skills to navigate ACP conversations with patients and healthcare providers. Methods: Our 2-hour communication skills training combined a series of didactic exercises with roleplay scenarios and follow-up coaching through a booster call conducted 2 weeks after training completion. Caregivers were randomized to receive either the communication skills training or enhanced usual care (EUC), which included screening and the provision of targeted referrals. Assessments were completed at baseline (T1) and at 2 (T2) and 5 (T3) months of follow-up. Results: A total of 34 caregivers enrolled and were randomized, of whom 19 completed the T2 and 18 completed the T3 assessment. 10 of the 13 caregivers who completed the training participated in interviews at T2 about their experiences and perceived benefits of participation. At T3, results indicated a strong effect size for reduced anxiety and distress and increased preparedness for death in caregivers who received the intervention relative to EUC. Participants reported that the training helped them feel confident initiating ACP conversations, validated in their fears about death, and helped them feel supported and less alone. Conclusion: Despite the challenges of recruiting a highly distressed group of caregivers, there were notable benefits of our communication skills training. Additional larger trials are needed to rigorously evaluate the efficacy of the training program and those that include caregivers of patients with other sites and stages of cancer to determine the generalizability of findings.

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. To determine the feasibility and acceptability of the Pediatric Serious Illness Communication Program (PediSICP) and explore family-centered outcomes. This cohort study was a single-group pilot study of the PediSICP in adolescents and young adults (AYAs; age ≥13 y) with serious illness, parents of seriously ill children, and interprofessional clinicians from April 2021 to March 2023 in a quaternary care pediatric hospital. Duration of follow-up was 1 month. Data were analyzed from January 2022 to March 2023. The PediSICP includes clinician training preceding an ACP communication occasion supported by communication guides and a template for electronic medical record documentation. Outcomes of interest were parent, patient, and clinician experiences with and perceptions of the PediSICP. Feasibility was defined a priori as at least 70% clinician intervention completion rates. A total of 10 virtual trainings were conducted among 40 clinicians, including 27 physicians, 7 nurse practitioners, 5 nurses, and 1 respiratory therapist, and 30 trained clinicians (75%) conducted and documented 42 ACP conversations with 33 parents (median [IQR] age, 43 [35-51] years; 25 [76%] female) and 5 AYAs (median [IQR] age, 19 [17-19] years; 3 [60%] female) who completed the intervention. The median (IQR) conversation duration was 27 (10-45) minutes. Most clinicians (29 clinicians [97%]) agreed that they felt prepared for the conversation, and all clinicians recommended the PediSICP. Parents reported participation was worthwhile (27 parents [84%]), they felt listened to (31 parents [94%]), and would recommend the PediSICP (28 parents [85%]). Parents endorsed higher therapeutic alliance after the PediSICP intervention compared with before (The Human Connection scale mean [SD] score, 57.6 [6.4] vs 55.3 [7.8]; P = .03) and decreased anxiety immediately after the intervention (Generalized Anxiety Disorder-7-item mean [SD] score, 10.1 [7.3] vs 8.4 [6.9]; P = .003), which persisted at the 1-month follow-up (mean [SD] score, 7.7 [6.8]; P = .03). This pilot cohort study found that the PediSICP was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness. These findings suggest that the PediSICP may empower interprofessional clinicians and improve ACP with families of children and AYAs who are seriously ill.

Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers

BackgroundPeople with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the ‘Thinking Now About Later’ tool, with open-ended questions about ‘what matters most’, and (2) a digital version of the ‘Life Wishes Cards’, a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers.MethodsDuring an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data.ResultsOf 52 participants, 21 people had dementia and 31 were family caregivers. The ‘Thinking Now About Later’ tool and ‘Life Wishes Cards’ were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online.ConclusionsAlthough less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.

Current status of advance care planning, palliative care consultation, and end-of-life care in patients with glioblastoma in South Korea.

Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status. We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care. With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001). The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.