Remembering the Patient in Discussions About Serious Illness: Moving From Decisions to Recommendations.
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ABSTRACT:
SUBMITTER: Greenwald JL
PROVIDER: S-EPMC7301918 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ImportanceClinician communication about goals of care is associated with improved patient outcomes and reduced intensity of end-of-life care, but it is unclear whether interventions can improve this communication.ObjectiveTo evaluate the efficacy of a patient-specific preconversation communication-priming intervention (Jumpstart-Tips) targeting both patients and clinicians and designed to increase goals-of-care conversations compared with usual care.Design, setting, and participantsMulticenter cluster-randomized trial in outpatient clinics with physicians or nurse practitioners and patients with serious illness. The study was conducted between 2012 and 2016.InterventionsClinicians were randomized to the bilateral, preconversation, communication-priming intervention (n = 65) or usual care (n = 67), with 249 patients assigned to the intervention and 288 to usual care.Main outcomes and measuresThe primary outcome was patient-reported occurrence of a goals-of-care conversation during a target outpatient visit. Secondary outcomes included clinician documentation of a goals-of-care conversation in the medical record and patient-reported quality of communication (Quality of Communication questionnaire [QOC]; 4-indicator latent construct) at 2 weeks, as well as patient assessments of goal-concordant care at 3 months and patient-reported symptoms of depression (8-item Patient Health Questionnaire; PHQ-8) and anxiety (7-item Generalized Anxiety Disorder survey; GAD-7) at 3 and 6 months. Analyses were clustered by clinician and adjusted for confounders.ResultsWe enrolled 132 of 485 potentially eligible clinicians (27% participation; 71 women [53.8%]; mean [SD] age, 47.1 [9.6] years) and 537 of 917 eligible patients (59% participation; 256 women [47.7%]; mean [SD] age, 73.4 [12.7] years). The intervention was associated with a significant increase in a goals-of-care discussion at the target visit (74% vs 31%; P < .001) and increased medical record documentation (62% vs 17%; P < .001), as well as increased patient-rated quality of communication (4.6 vs 2.1; P = .01). Patient-assessed goal-concordant care did not increase significantly overall (70% vs 57%; P = .08) but did increase for patients with stable goals between 3-month follow-up and last prior assessment (73% vs 57%; P = .03). Symptoms of depression or anxiety were not different between groups at 3 or 6 months.Conclusions and relevanceThis intervention increased the occurrence, documentation, and quality of goals-of-care communication during routine outpatient visits and increased goal-concordant care at 3 months among patients with stable goals, with no change in symptoms of anxiety or depression. Understanding the effect on subsequent health care delivery will require additional study.Trial registrationClinicalTrials.gov identifier: NCT01933789.
| S-EPMC6145723 | biostudies-literature
Project description:ObjectivePatient engagement (PE) is warranted when treatment risks and outcomes are uncertain, as is the case for higher risk medical devices. Previous research found that patients were not engaged in discussions or decisions about implantable medical devices. This study explored physician views about engaging patients in such discussions.DesignQualitative interviews using a basic descriptive approach.SettingCanada.ParticipantsPracticing cardiovascular and orthopaedic physicians.Main outcome measuresLevel, processes and determinants of PE in medical device discussions and decisions.ResultsViews were largely similar among 10 cardiovascular and 12 orthopaedic physicians interviewed. Most said that it was feasible to inform and sometimes involve patients in discussions, but not to partner with them in medical device decision-making. PE was constrained by patient (comfort with PE, technical understanding, physiologic/demographic characteristics, prognosis), physician (device preferences, time), health system (purchasing contracts) and device factors (number of devices on market, comparative advantage). A framework was generated to help physicians engage patients in discussions about medical devices, even when decisions may not be preference sensitive due to multiple constraints on choice.ConclusionsThis study identified that patients are not engaged in discussions or decisions about implantable medical devices. This may be due to multiple constraints. Further research should establish the legitimacy, prevalence and impact of constraining factors, and examine whether and how different levels and forms of PE are needed and feasible.
| S-EPMC5412024 | biostudies-literature
Project description:To assess the influence of patient preferences and urologist recommendations in treatment decisions for clinically localized prostate cancer.We enrolled 257 men with clinically localized prostate cancer (prostate-specific antigen <20; Gleason score 6 or 7) seen by urologists (primarily residents and fellows) in 4 Veterans Affairs medical centers. We measured patients' baseline preferences prior to their urology appointments, including initial treatment preference, cancer-related anxiety, and interest in sex. In longitudinal follow-up, we determined which treatment patients received. We used hierarchical logistic regression to determine the factors that predicted treatment received (active treatment v. active surveillance) and urologist recommendations. We also conducted a directed content analysis of recorded clinical encounters to determine if urologists discussed patients' interest in sex.Patients' initial treatment preferences did not predict receipt of active treatment versus surveillance, ??2(4) = 3.67, P = 0.45. Instead, receipt of active treatment was predicted primarily by urologists' recommendations, ??2(2) = 32.81, P < 0.001. Urologists' recommendations, in turn, were influenced heavily by medical factors (age and Gleason score) but were unrelated to patient preferences, ??2(6) = 0, P = 1. Urologists rarely discussed patients' interest in sex (<15% of appointments).Patients' treatment decisions were based largely on urologists' recommendations, which, in turn, were based on medical factors (age and Gleason score) and not on patients' personal views of the relative pros and cons of treatment alternatives.
| S-EPMC5587215 | biostudies-other
Project description:The guideline-recommended elements to include in discussions about goals of care with patients with serious illness are mostly based on expert opinion. We sought to identify which elements are most important to patients and their families.We used a cross-sectional study design involving patients from 9 Canadian hospitals. We asked older adult patients with serious illness and their family members about the occurrence and importance of 11 guideline-recommended elements of goals-of-care discussions. In addition, we assessed concordance between prescribed goals of care and patient preferences, and we measured patient satisfaction with goals-of-care discussions using the Canadian Health Care Evaluation Project (CANHELP) questionnaire.Our study participants included 233 patients (mean age 81.2 yr) and 205 family members (mean age 60.2 yr). Participants reported that clinical teams had addressed individual elements of goals-of-care discussions infrequently (range 1.4%-31.7%). Patients and family members identified the same 5 elements as being the most important to address: preferences for care in the event of life-threatening illness, values, prognosis, fears or concerns, and questions about goals of care. Addressing more elements was associated with both greater concordance between patients' preferences and prescribed goals of care, and greater patient satisfaction.We identified elements of goals-of-care discussions that are most important to older adult patients in hospital with serious illness and their family members. We found that guideline-recommended elements of goals-of-care discussions are not often addressed by health care providers. Our results can inform interventions to improve the determination of goals of care in the hospital setting.
| S-EPMC4259796 | biostudies-other
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.
| S-EPMC10323709 | biostudies-literature
Project description:Background/Objectives: The serious illness conversation (SIC) is an evidence-based framework for conversations with patients about a serious illness diagnosis. The objective of our study was to develop and validate a novel tool, the SIC-evaluation exercise (SIC-Ex), to facilitate assessment of resident-led conversations with oncology patients. Design: We developed the SIC-Ex based on SIC and on the Royal College of Canada Medical Oncology milestones. Seven resident trainees and 10 evaluators were recruited. Each trainee conducted an SIC with a patient, which was videotaped. The evaluators watched the videos and evaluated each trainee by using the novel SIC-Ex and the reference Calgary-Cambridge guide (CCG) at months zero and three. We used Kane's validity framework to assess validity. Results: Intra-class correlation using average SIC-Ex scores showed a moderate level of inter-evaluator agreement (range 0.523-0.822). Most evaluators rated a particular resident similar to the group average, except for one to two evaluator outliers in each domain. Test-retest reliability showed a moderate level of consistency among SIC-Ex scores at months zero and three. Global rating at zero and three months showed fair to good/very good inter-evaluator correlation. Pearson correlation coefficients comparing total SIC-Ex and CCG scores were high for most evaluators. Self-scores by trainees did not correlate well with scores by evaluators. Conclusions: SIC-Ex is the first assessment tool that provides evidence for incorporating the SIG guide framework for evaluation of resident competence. SIC-Ex is conceptually related to, but more specific than, CCG in evaluating serious illness conversation skills.
| S-EPMC8241377 | biostudies-literature
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).
| S-EPMC5203706 | biostudies-literature
Project description:Healthy lifestyle interventions that increase physical activity and healthy dietary habits can help improve the physical health of people with serious mental illness (SMI). Yet, these interventions are not implemented in routine practice settings. This mixed methods study examined the decisions that leaders from three supportive housing agencies made as they planned to sustain a peer-led healthy lifestyle intervention for people with SMI at the end of a clinical trial. A combination of implementation strategies that addressed cost concerns, generated local evidence of the intervention's benefits, and provided ongoing training was identified as important for sustainability. A sustainability model illustrating implementation strategies and mechanisms for supporting three sustainability domains (funding, organizational capacity, and adaptation) was prioritized by participants. Study findings can inform future studies testing strategies and mechanisms to support the sustainability of interventions in routine practice settings to improve the physical health of people with SMI.
| S-EPMC8158167 | biostudies-literature
Project description: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.
| S-EPMC7333843 | biostudies-literature
Project description:This study explored the risk of patient safety events and associated nonfatal physical harms and mortality in a cohort of persons with serious mental illness. This group experiences high rates of medical comorbidity and premature mortality and may be at high risk of adverse patient safety events.Medical record review was conducted for medical-surgical hospitalizations occurring during 1994-2004 in a community-based cohort of Maryland adults with serious mental illness. Individuals were eligible if they died within 30 days of a medical-surgical hospitalization and if they also had at least one prior medical-surgical hospitalization within five years of death. All admissions took place at Maryland general hospitals. A case-crossover analysis examined the relationships among patient safety events, physical harms, and elevated likelihood of death within 30 days of hospitalization.A total of 790 hospitalizations among 253 adults were reviewed. The mean number of patient safety events per hospitalization was 5.8, and the rate of physical harms was 142 per 100 hospitalizations. The odds of physical harm were elevated in hospitalizations in which 22 of the 34 patient safety events occurred (p<.05), including medical events (odds ratio [OR]=1.5, 95% confidence interval [CI]=1.3-1.7) and procedure-related events (OR=1.6, CI=1.2-2.0). Adjusted odds of death within 30 days of hospitalization were elevated for individuals with any patient safety event, compared with those with no event (OR=3.7, CI=1.4-10.3).Patient safety events were positively associated with physical harm and 30-day mortality in nonpsychiatric hospitalizations for persons with serious mental illness.
| S-EPMC5048490 | biostudies-literature