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 | 2020 Jun
REPOSITORIES: biostudies-literature
Publications
Remembering the Patient in Discussions About Serious Illness: Moving From Decisions to Recommendations.
Greenwald Jeffrey L JL Rosenberg Leah B LB Jacobsen Juliet J
Journal of graduate medical education 20200601 3
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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: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: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:BackgroundThe 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.MethodsWe 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.ResultsOur 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.InterpretationWe 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-literature
Project description:Uterine fibroids are noncancerous tumors associated with significant morbidity among symptomatic patients. While medical and surgical treatments have expanded, hysterectomy remains common. We interviewed women diagnosed with uterine fibroids (n = 47) to explore their experiences and recommendations for shared decision-making. A majority were non-Hispanic Black, highly educated (51.1%), and had graduate degrees (40.4%). Participants with both positive and negative provider experiences expressed a desire for a more proactive therapeutic approach, including a presentation by their provider of the spectrum of medical and surgical treatment options, and greater provider recognition of the impact of symptoms on quality of life. Women advocated for expanded shared decision-making that acknowledged their contribution to their own treatment plan and felt early screening and improved patient/provider education of uterine fibroid symptoms would facilitate greater congruence between treatment approaches and patient goals. Perceptions of insufficient input into their treatment plans frequently served as a barrier to care-seeking and treatment acceptance among women with uterine fibroid symptoms. Improved discussion of treatment options in the context of the unique symptom burden and values of the patient may facilitate greater provider trust and acceptance of uterine fibroid treatment.
| S-EPMC8532210 | biostudies-literature
Project description:ImportanceHigh-quality, person-centered patient-clinician communication is critical in health care and may be less effective for patients with serious illness. Little is understood about differences in patient-clinician communication experiences of adults with and without serious illness.ObjectivesTo determine whether perceptions of patient-clinician communication experiences differ between adults with and without serious illness.Design, setting, and participantsThis population-based cross-sectional survey was fielded from April 20 to May 31, 2021, and data were analyzed from January 27, 2023, to December 10, 2024. Participants included a nationally representative sample of US English- or Spanish-speaking adults, including people from historically marginalized groups (eg, Black and Hispanic or Latino individuals, people with low income), responding to an online or telephone survey.ExposureParticipants were categorized by serious illness status. Participants with serious illness replied yes to (1) having a diagnosis from a list of medical conditions and (2) reporting feeling sicker or having decreased functionality during the last year.Main outcomes and measuresThe survey asked about community partner-derived measures of patient-clinician communication experiences, including trusting clinicians, feeling afraid to speak up, and being unsure about next steps. Multivariable logistic regression models were used to estimate the association of serious illness with these communication experiences, adjusting for sociodemographic characteristics. Percentages were weighted according to the National Opinion Research Center's statistical weighting methods to account for differences in nonresponse.ResultsOf 6126 individuals invited, 1847 (30.2%) completed the survey and were included in analysis (mean [SD] age, 48.4 [17.5] years); 950 (51.8%) identified as female; 191 (11.9%) identified as Black and 287 (16.7%) as Hispanic; and 434 (17.8%) had an annual income less than $30 000 (here called low income). Among respondents, 363 participants (18.5%) had serious illness (mean [SD] age, 50.2 [18.1] years; 218 [64.5%] female; 34 [12.4%] Black; 54 [16.4%] Hispanic; 131 [27.3%] with low income), and 1484 (81.5%) had no serious illness (mean [SD] age, 48.0 [17.4] years; 732 [48.9%] female; 157 [11.8%] Black; 233 [16.7%] Hispanic; 303 [15.6%] with low income). Compared with adults without serious illness, adults with serious illness were more likely to report leaving a visit unsure about next steps (adjusted odds ratio [AOR], 2.30; 95% CI, 1.62-3.27); being afraid to ask questions or speak up (AOR, 2.18; 95% CI, 1.55-3.08); believing they were talked down to or made to feel inferior (AOR, 1.90; 95% CI, 1.24-2.91); and believing that they were treated unfairly by clinicians (AOR, 3.26; 95% CI, 2.43-4.38).Conclusions and relevanceIn this cross-sectional study, adults with serious illness more often had worse patient-clinician communication experiences. Further research is needed to better understand and develop interventions to improve perceptions of patient-clinician communication experiences for adults with serious illness.
| S-EPMC11894496 | biostudies-literature
Project description:BackgroundPeople affected by serious illness face several threats to their well-being: physical symptoms, psychological distress, disrupted social relations, and spiritual/existential crises. Relationships with clinicians provide a form of structured support that promotes shared decision-making and adaptive stress coping. Measuring relationship quality may improve quality assessment and patient care outcomes. However, researchers and those promoting quality improvement lack clear guidance on measuring this.AimTo identify and assess items from valid measures of patient-provider relationship quality in serious illness settings for guiding quality assessment.DesignScoping review.Data sourcesWe identified peer-reviewed, English-language articles published from 1990 to 2023 in CINAHL, Embase, and PubMed. Eligible articles described the validation of measures assessing healthcare experiences of patient populations characterized by serious illness. We used Clarke et al.'s theory of relationship quality to assess relationship-focused items.ResultsFrom 3868 screened articles, we identified 101 publications describing 47 valid measures used in serious illness settings. Measures assessed patients and other caregivers. We determined that 597 of 2238 items (26.7%) related to relationships. Most measures (n = 46) included items related to engaging the patient as a whole person. Measures evaluated how providers promote information exchange (n = 35), foster therapeutic alliance (n = 35), recognize and respond to emotion (n = 27), and include patients in care-related decisions (n = 23). Few instruments (n = 9) assessed patient self-management and navigation.ConclusionsMeasures include items that assess patient-provider relationship quality in serious illness settings. Researchers may consider these for evaluating and improving relationship quality, a patient-centered care and research outcome.
| S-EPMC11877987 | biostudies-literature
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:ImportanceHigh-quality goals-of-care communication is critical to delivering goal-concordant, patient-centered care to hospitalized patients with chronic life-limiting illness. However, implementation and documentation of goals-of-care discussions remain important shortcomings in many health systems.ObjectiveTo evaluate the efficacy, feasibility, and acceptability of a patient-facing and clinician-facing communication-priming intervention to promote goals-of-care communication for patients hospitalized with serious illness.Design, setting, and participantsThis randomized clinical trial enrolled patients from November 6, 2018, to February 18, 2020. The setting was 2 hospitals in an academic health care system in Seattle, Washington. Participants included hospitalized adults with chronic life-limiting illness, aged 65 years or older and with markers of frailty, or aged 80 years or older. Data analysis was performed from August 2020 to August 2021.InterventionPatients were randomized to usual care with baseline questionnaires (control) vs the Jumpstart communication-priming intervention. Patients or surrogates in the intervention group and their clinicians received patient-specific Jumpstart Guides populated with data from questionnaires and the electronic health records (EHRs) that were designed to prompt and guide a goals-of-care discussion.Main outcomes and measuresThe primary outcome was EHR documentation of a goals-of-care discussion between randomization and hospital discharge. Additional outcomes included patient-reported or surrogate-reported goals-of-care discussions, patient-reported or surrogate-reported quality of communication, and intervention feasibility and acceptability.ResultsOf 428 eligible patients, this study enrolled 150 patients (35% enrollment rate; mean [SD] age, 59.2 [13.6] years; 66 women [44%]; 132 [88%] by patient consent and 18 [12%] by surrogate consent). Seventy-five patients each were randomized to the intervention and control groups. Compared with the control group, the cumulative incidence of EHR-documented goals-of-care discussions between randomization and hospital discharge was higher in the intervention group (16 of 75 patients [21%] vs 6 of 75 patients [8%]; risk difference, 13% [95% CI, 2%-24%]; risk ratio, 2.67 [95% CI, 1.10-6.44]; P = .04). Patient-reported or surrogate-reported goals-of-care discussions did not differ significantly between groups (30 of 66 patients [45%] vs 36 of 66 patients [55%]), although the intrarater consistency of patient and surrogate reports was poor. Patient-rated or surrogate-rated quality of communication did not differ significantly between groups. The intervention was feasible and acceptable to patients, surrogates, and clinicians.Conclusions and relevanceIn this randomized clinical trial, a patient-facing and clinician-facing communication priming intervention for seriously ill, hospitalized patients promoted EHR-documented goals-of-care discussions before discharge with good feasibility and acceptability. Communication-priming interventions should be reexamined in a larger randomized clinical trial to better understand their effectiveness in the inpatient setting.Trial registrationClinicalTrials.gov Identifier: NCT03746392.
| S-EPMC8976242 | 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