"It helps us say what's important..." Developing Serious Illness Topics: A clinical visit agenda-setting tool.

BACKGROUND: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. OBJECTIVE: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. PATIENT OR FAMILY INVOLVEMENT: Two family members of seriously ill individuals advised. METHODS: We performed a literature review and developed a prototype agenda-setting tool. We modified the tool based on cognitive interviews with patients, families and clinicians. We piloted the tool with patients, care partners and clinicians to gain an initial impression of its perceived value. RESULTS: Interviews with eight patients, eight care partners and seven clinicians, resulted in refinements to the initial tool, including supplementation with visual cues. In the pilot test, seven clinicians used the tool with 11 patients and 12 family members. Qualitatively, patients and care partners reported the guide helped them consider and assert their priorities. Clinicians reported the tool complemented usual practice. Most participants reported no distress, disruption or confusion. DISCUSSION: Patients, care partners and clinicians appreciated centering patient priorities in serious illness visits using the agenda-setting tool. More thorough evaluation is required. PRACTICAL VALUE: The agenda-setting tool may operationalize elements of good serious illness care.

Association Between Opening a Palliative Care Unit and Hospital Care for Patients With Serious Illness.

Background: Palliative care units (PCUs) are devoted to intensive management of symptoms and other palliative care needs. We examined the association between opening a PCU and acute care processes at a single U.S. academic medical center. Methods: We retrospectively compared acute care processes for seriously ill patients admitted before and after the opening of a PCU at a single academic medical center. Outcomes included rates of change in code status to do-not-resuscitate (DNR) and comfort measures only (CMO) status, and time to DNR and CMO. We calculated unadjusted and adjusted rates and used logistic regression to assess interaction between care period and palliative care consultation. Results: There were 16,611 patients in the pre-PCU period and 18,305 patients in the post-PCU period. The post-PCU cohort was slightly older, with a higher Charlson index (p < 0.001 for both). Post-PCU, unadjusted rates of DNR and CMO increased from 16.4% to 18.3% (p < 0.001) and 9.3% to 11.5% (p < 0.001), respectively. Post-PCU, median time to DNR was unchanged (0 days), and time to CMO decreased from 6 to 5 days. The adjusted odds ratio was 1.08 (p = 0.01) for DNR and 1.19 (p < 0.001) for CMO. Significant interaction between care period and palliative care consultation for DNR (p = 0.04) and CMO (p = 0.01) suggests an important role for palliative care engagement. Conclusions: The opening of a PCU at a single center was associated with increased rates of DNR and CMO status for seriously ill patients.

Psychometric assessment of the consideRATE questions, a new measure of serious illness experience, with an online simulation study.

OBJECTIVE: To assess the psychometric properties of the consideRATE questions, a measure of serious illness experience. METHODS: We recruited people at least 50 years old via paid panels online, with US-Census-based quotas. We randomized participants to a patient experience story at two time points. Participants completed a series of measures, including the consideRATE questions. We assessed convergent (Pearson's correlation), discriminative (one-way ANOVA with Tukey's test for multiple comparisons) and divergent (Pearson's correlation) validity. We also assessed intra-rater reliability (intra-class correlation) and responsiveness to change (t-tests). RESULTS: We included 809 individuals in our analysis. We established convergent validity (r = 0.77; p < 0.001); discriminative validity (bad/neutral stories [mean diff=0.4; p < 0.001]; neutral/ good stories [mean diff=1.3; p < 0.001]) and moderate divergent validity (r = 0.57; p < 0.001). We established sensitivity to change in all stories (bad/good [mean diff=1.52; p < 0.001]; good/bad [mean diff= -1.68; p < 0.001]; neutral/bad [mean diff= -0.57; p < 0.001]; good/neutral [mean diff= -1.11; p < 0.001]; neutral/good [mean diff= 1.1; p < 0.001]) but one (bad/neutral [mean diff= 0.4; p < 0.07]). Intra-rater reliability was demonstrated between time points (r = 0.77; p < 0.001). CONCLUSIONS: the consideRATE questions were reliable and valid in a simulated online test. PRACTICE IMPLICATIONS: the consideRATE questions may be a practical way to measure serious illness experience and the effectiveness of interventions to improve it.

Development of an Abstraction Tool to Assess Palliative Care Components.

Background: Little is known regarding the fidelity of delivery of guideline-recommended components of palliative care in "real world" encounters. Objective: To develop a qualitative coding framework to identify components of clinical palliative care in clinical documentation across care settings. Design: Retrospective review of palliative care clinical documentation from medical providers, with directed qualitative content analysis to identify components of clinical care documented. Setting/Subjects: Purposively sampled deceased patients seen by palliative care at a US academic medical center between 7/1/2011-7/1/2018. Main Outcomes and Measures: The outcome of this work is a coding framework for use in future research. We assessed the robustness of the framework using Cohen's kappa. Results: We reviewed sixty-two encounters from twenty-six patients. We identified 7 major themes in documentation: (1) addressing physical symptoms, (2) addressing psychological symptoms, (3) establishing illness understanding, (4) supporting decision making, (5) end-of-life planning, (6) understanding psychosocial context, and (7) care coordination. Interrater reliability varied widely between components, with Cohen's kappa ranging from -.51 to 1. Conclusions: This pilot study provides a coding framework to measure documentation of clinical palliative care components. Several components could not be reliably identified using this framework, suggesting the need for additional measurement strategies.

Development of a theory-based video-game intervention to increase advance care planning conversations by healthcare providers.

BACKGROUND: Hospitalization offers an opportunity for healthcare providers to initiate advance care planning (ACP) conversations, yet such conversations occur infrequently. Barriers to these conversations include attitudes, skill, and time. Our objective was to develop a theory-based, provider-level intervention to increase the frequency of ACP conversations in hospitals. METHODS: We followed a systematic process to develop a theory-based, provider-level intervention to increase ACP conversations between providers and their hospitalized patients. Using principles established in Intervention Mapping and the Behavior Change Wheel, we identified a behavioral target, a theory of behavior change, behavior change techniques, and a mode of delivery. We addressed a limitation of these two processes of intervention development by also establishing a framework of design principles to structure the selection of intervention components. We partnered with a game development company to translate the output into a video game. RESULTS: We identified willingness to engage in ACP conversations as the primary contributor to ACP behavior, and attitudes as a modifiable source of this willingness. We selected self-determination theory, and its emphasis on increasing autonomous motivation, as a relevant theory of behavior change and means of changing attitudes. Second, we mapped the components of autonomous motivation (i.e., autonomy, competence, and relatedness) to relevant behavior change techniques (e.g., identity). Third, we decided to deliver the intervention using a video game and to use the narrative engagement framework, which describes the use of stories to educate, model behavior, and immerse the user, to structure our selection of intervention components. Finally, in collaboration with a game development company, we used this framework to develop an adventure video game (Hopewell Hospitalist). CONCLUSIONS: The systematic development of a theory-based intervention facilitates the mechanistic testing of the efficacy of the intervention, including the specification of hypotheses regarding mediators and moderators of outcomes. The intervention will be tested in a randomized clinical trial.

User-Centered Design of the consideRATE Questions, a Measure of People's Experiences When They Are Seriously Ill.

CONTEXT: No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. OBJECTIVES: The objective of the study was to develop the consideRATE questions. METHODS: This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). RESULTS: Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1-5). CONCLUSION: Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

Acceptability and Impact of a Required Palliative Care Rotation with Prerotation and Postrotation Observed Simulated Clinical Experience during Internal Medicine Residency Training on Primary Palliative Communication Skills.

BACKGROUND: Improving communication training for primary palliative care using a required palliative care rotation for internal medicine (IM) residents has not been assessed. OBJECTIVE: To assess skills acquisition and acceptability for IM residents not selecting an elective. DESIGN: A consecutive, single-arm cohort underwent preobjective structured clinical examination (OSCE) with learner-centric feedback, two weeks of clinical experience, and finally a post-OSCE to crystallize learner-centric take home points. SETTING/SUBJECTS: IM second year residents from Dartmouth-Hitchcock were exposed to a required experiential palliative care rotation. MEASUREMENTS: Pre- and post-OSCE using a standardized score card for behavioral skills, including patient-centered interviewing, discussing goals of care/code status, and responding to emotion, as well as a confidential mixed qualitative and quantitative evaluation of the experience. RESULTS: Twelve residents were included in the educational program (two were excluded because of shortened experiences) and showed statistically significant improvements in overall communication and more specifically in discussing code status and responding to emotions. General patient-centered interviewing skills were not significantly improved, but prerotation scores reflected pre-existing competency in this domain. Residents viewed the observed simulated clinical experience (OSCE) and required rotation as positive experiences, but wished for more opportunities to practice communication skills in real clinical encounters. CONCLUSIONS: A required palliative care experiential rotation flanked by OSCEs at our institution improved the acquisition of primary palliative care communication skills similarly to other nonclinical educational platforms, but may better meet the needs of the resident and faculty as well as address all required ACGME milestones.