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Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis.

ABSTRACT: BACKGROUND/OBJECTIVE:Oncology guidelines recommend earlier communication with patients about prognosis and goals-of-care in serious illness. However, current evidence leaves gaps in our understanding of the experience of these conversations. This analysis evaluates the patient and clinician experience of a conversation using a Serious Illness Conversation Guide (SICG). DESIGN/SETTING:Secondary analysis from a cluster-randomized clinical trial in a northeastern cancer center. PARTICIPANTS:Physicians, advanced practice clinicians, and patients with advanced cancer who received the intervention. INTERVENTION:SICG, clinician training, systems-changes. MAIN OUTCOMES AND MEASURES:The patient questionnaire assessed perceptions of the conversation and impact on anxiety, hopefulness, peacefulness, sense of control over medical decisions, closeness with their clinician, and behaviors. The clinician questionnaire assessed feasibility, acceptability, and impact on satisfaction in their role. RESULTS:We enrolled 54 clinicians and 163 patients; 41 clinicians and 118 patients had a SICG discussion. Most patients described the conversation as worthwhile (79%) and reported no change or improvement in their sense of peacefulness, hopefulness, and anxiety (on average 79%); 56% reported feeling closer with their clinician. Qualitative patient data described positive behavior changes, including enhanced planning for future care and increased focus on personal priorities. Nearly 90% of clinicians agreed that the SICG facilitated timely, effective conversations, and 70% reported increased satisfaction in their role. CONCLUSION:Conversations using a SICG were feasible, acceptable, and were associated with positive experiences for both patients and clinicians in oncology in ways that align with national recommendations for serious illness communication. This trial is registered at ClinicalTrials.gov: NCT01786811 https://clinicaltrials.gov/ct2/show/NCT01786811.

SUBMITTER: Paladino J

PROVIDER: S-EPMC7333843 | biostudies-literature | 2020 Jul

REPOSITORIES: biostudies-literature

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Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis.

Paladino Joanna J Koritsanszky Luca L Nisotel Lauren L Neville Bridget A BA Miller Kate K Sanders Justin J Benjamin Evan E Fromme Erik E Block Susan S Bernacki Rachelle R

Cancer medicine 20200504 13

<h4>Background/objective</h4>Oncology guidelines recommend earlier communication with patients about prognosis and goals-of-care in serious illness. However, current evidence leaves gaps in our understanding of the experience of these conversations. This analysis evaluates the patient and clinician experience of a conversation using a Serious Illness Conversation Guide (SICG).<h4>Design/setting</h4>Secondary analysis from a cluster-randomized clinical trial in a northeastern cancer center.<h4>Pa ...[more]

PMID: 32363775

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Project description:ImportanceBlack patients with serious illness experience higher-intensity care at the end of life. Little research has used critical, race-conscious approaches to examine factors associated with these outcomes.ObjectiveTo investigate the lived experiences of Black patients with serious illness and how various factors may be associated with patient-clinician communication and medical decision-making.Design, setting, and participantsIn this qualitative study, one-on-one, semistructured interviews were conducted with 25 Black patients with serious illness hospitalized at an urban academic medical center in Washington State between January 2021 and February 2023. Patients were asked to discuss experiences with racism, how those experiences affected the way they communicated with clinicians, and how racism impacted medical decision-making. Public Health Critical Race Praxis was used as framework and process.Main outcomes and measuresThe experience and of racism and its association, as described by Black patients who had serious illness, with patient-clinician communication and medical decision-making within a racialized health care setting.ResultsA total of 25 Black patients (mean [SD] age, 62.0 [10.3] years; 20 males [80.0%]) with serious illness were interviewed. Participants had substantial socioeconomic disadvantage, with low levels of wealth (10 patients with 0 assets [40.0%]), income (annual income <$25 000 among 19 of 24 patients with income data [79.2%]), educational attainment (mean [SD] 13.4 [2.7] years of schooling), and health literacy (mean [SD] score in the Rapid Estimate of Adult Literacy in Medicine-Short Form, 5.8 [2.0]). Participants reported high levels of medical mistrust and high frequency of discrimination and microaggressions experienced in health care settings. Participants reported epistemic injustice as the most common manifestation of racism: silencing of their own knowledge and lived experiences about their bodies and illness by health care workers. Participants reported that these experiences made them feel isolated and devalued, especially if they had intersecting, marginalized identities, such as being underinsured or unhoused. These experiences were associated with exacerbation of existing medical mistrust and poor patient-clinician communication. Participants described various mechanisms of self-advocacy and medical decision-making based on prior experiences with mistreatment from health care workers and medical trauma.Conclusions and relevanceThis study found that Black patients' experiences with racism, specifically epistemic injustice, were associated with their perspectives on medical care and decision-making during serious illness and end of life. These findings suggest that race-conscious, intersectional approaches may be needed to improve patient-clinician communication and support Black patients with serious illness to alleviate the distress and trauma of racism as these patients near the end of life.

Project description:Background: International family-centered critical care guidelines recommend formal, structured communication to ensure that clinical decision making is informed by a shared understanding of diagnosis and prognosis and patient goals and preferences. Tools to facilitate these recommendations are limited. Objective: To examine the feasibility, acceptability, and utility of a standardized serious illness conversation (SIC) to guide communication between nonpalliative care trained providers and surrogates of critically ill, mechanically ventilated patients. Methods: After providers received training, including simulation, we implemented SIC in October 2018. A total of 11 hospitalist providers were eligible to perform SICs over the study interval. Providers met in person with surrogates of adult, mechanically ventilated patients in the medical intensive care unit within 48 hours of intubation. To determine acceptability, surrogates were surveyed 2 months after SIC completion, and providers were surveyed between June and July 2018. To determine feasibility and utility, two independent investigators reviewed SIC documentation and coded responses into categories. Results: Of 72 eligible patients, advanced care planning documentation was completed in 50 patients, including 36 SICs, for an advance care planning completion rate of 69% and an SIC completion rate of 50%. The average SIC was completed in 30 minutes, 3 days after intubation. Of the 19 surrogates surveyed, 95% found the SIC to be mostly or extremely worthwhile. Nine of 11 hospitalist providers completed the follow-up survey. Each of the nine providers who completed the survey found the guide valuable to patient care and easy to administer. The conversation yielded valuable information in terms of goals, fears, and worries; sources of strength; abilities critical to the patient; and understanding how much the patient would be willing to go through for the possibility of gaining more time. Conclusion: We found that implementation of a structured communication tool in the intensive care unit was feasible and acceptable to surrogates and providers; yet, fidelity to the timing and completion was modest. The tool appeared to yield valuable information for understanding the goals, fears, and care preferences of mechanically ventilated patients. Steps to increase fidelity, in accordance with family-centered care guidelines, are warranted.

Project description:Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.We developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach's alpha.Exploratory factor analysis revealed three domains - Care Team, Communication, and Care Goals - after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X 2 (206)?=?565.37, p?<?0.001; CFI?=?0.879; TLI?=?0.864; RMSEA?=?0.076. After model respecification, including removing one additional item and allowing paths between theoretically plausible error terms, the final 21 item tool exhibited good fit X 2 (173)?=?295.63, p?<?0.001; CFI?=?0.958; TLI?=?0.949; RMSEA?=?0.048. Cronbach's alpha revealed high reliability of each domain (Care Team?=?0.92, Communication?=?0.83, Care Goals?=?0.77) and the entire scale (??=?0.91). ICC showed adequate test-retest validity (ICC?=?0.58; 95% CI: 0.52-0.65) of the full scale.When administered earlier in the chronic illness trajectory, a new patient experience scale focused on care teams across settings, communication, and care goals, displayed strong reliability and performed well psychometrically.This trial ( NCT01746446 ) was registered at ClinicalTrials.gov on November 27, 2012 (retrospectively registered).

Project description:BackgroundPediatric oncology patients have a high rate of clinical deterioration frequently requiring critical care. Patient deterioration events are distressing for clinicians, but little is known about how Pediatric Early Warning Systems (PEWS) impact clinicians' emotional responses to deterioration events.MethodsSemi-structured interviews were conducted with 83 nurses, pediatricians, oncologists, and intensive care clinicians who had recently participated in a patient deterioration event at two pediatric oncology hospitals of different resource-levels: St. Jude Children's Research Hospital (N = 42 participants) in Memphis, Tennessee or Unidad Nacional de Oncología Pediátrica (N = 41 participants) in Guatemala City, Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Each transcript was coded by two researchers and analyzed for thematic content.ResultsEmotions around patient deterioration including concern, fear, and frustration were reported across all disciplines at both hospitals. Concern was often triggered by an elevated PEWS score and usually resulted in increased attention, which reassured bedside clinicians that patients were receiving necessary interventions. However, persistently elevated PEWS scores, particularly at St. Jude Children's Research Hospital, occasionally resulted in a false sense of relief, diminishing clinician attention and negatively impacting patient care. Nurses at both institutions described how PEWS amplified their voices, engendering confidence and empowerment, two of the only positive emotions described in the study.ConclusionClinicians experienced a range of emotions while caring for high-risk patients in the setting of clinical deterioration. These emotions have the potential to contribute to compassion fatigue and burnout, or to resilience. Acknowledgment and further investigation of the complex interplay between PEWS and clinician emotions are necessary to maximize the impact of PEWS on patient safety while simultaneously supporting staff wellbeing.

Project description:ObjectivesThe Serious Illness Conversation Guide (SICG) has emerged as a framework for conversations with patients with a serious illness diagnosis. This study reports on narratives generated from open-ended questions of a novel assessment tool, the Serious Illness Conversation-Evaluation Exercise (SIC-Ex), to assess resident-led conversations with patients in oncology outpatient clinics.DesignQualitative study using template analysis.SettingThree academic cancer centres in Canada.Participants7 resident physicians (trainees), 7 patients from outpatient cancer clinics, 10 preceptors (raters) consisting of medical oncologists, palliative care physicians and radiation oncologists.InterventionsEach trainee conducted an SIC with a patient, which was videotaped. The raters watched the videos and evaluated each trainee using the novel SIC-Ex and the reference Calgary-Cambridge Guide (CCG) initially and again 3 months later. Two independent coders used template analysis to code the raters' narrative comments and identify themes/subthemes.Outcome measuresHow narrative comments aligned with elements of the CCG and SICG.ResultsTemplate analysis yielded four themes: adhering to SICG, engaging patients and family members, conversation management and being mindful of demeanour. Narrative comments identified numerous verbal and non-verbal elements essential to SICG. Some comments addressing general skills in engaging patients/families and managing the conversation (eg, setting agenda, introduction, planning, exploring, non-verbal communication) related to both the CCG and SICG, whereas other comments such as identifying substitute decision maker(s), affirming commitment and introducing Advance Care Planning were specific to the SICG.ConclusionsNarrative comments generated by SIC-Ex provided detailed and nuanced insights into trainees' competence in SIC, beyond the numerical ratings of SIC-Ex and the general communication skills outlined in the CCG, and may contribute to a more fulsome assessment of SIC skills.

Dataset Information

Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis.

Publications

Patient and clinician experience of a serious illness conversation guide in oncology: A descriptive analysis.

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