Integration of palliative care consultation into the management of patients with chronic limb-threatening ischemia.

OBJECTIVE: We assessed the feasibility of integrating palliative care consultation into the routine management of patients with chronic limb-threatening ischemia (CLTI). Additionally, we sought to describe patient-reported outcomes from the palliative care and vascular literature in patients with CLTI receiving a palliative care consultation at our institution. METHODS: This was a single-institution, prospective, observational study that aimed to assess feasibility of incorporating palliative care consultation into the management of patients admitted to our tertiary academic medical center with CLTI by looking at utilization of palliative care before and after implementation of a protocol-based palliative care referral system. A survey comprised of patient-reported outcomes from the palliative care literature was administered to patients before and after palliative consultation. Length of stay and mortality were compared between our study cohort and a historic cohort of patients admitted with CLTI. RESULTS: Over a 14-month enrollment period, 44% of patients (n = 39) with CLTI (rest pain, 36%; tissue loss, 64%) admitted to the vascular service received palliative care consultation, compared with 5% of patients (n = 4) who would have met criteria over the preceding 14 months before our protocol was instituted. The mean age was 69 years, 23% were female, 92% were white, and 49% were able to ambulate independently. Revascularization included bypass (46%), peripheral vascular intervention (23%), and femoral endarterectomy (21%). Additional procedures included minor amputation or wound debridement (26%) and major amputation (15%). No patients received medical management alone. After receiving palliative care consultation, patients reported experiencing less emotional distress than before consultation (P = .03). They also reported being less bothered by uncertainty regarding what to expect from the course of their illness (P = .002). Fewer patients reported being unsure of the purpose of their medical care after palliative care consultation (8%) vs before (18%), although this was not statistically significant (P = .10). Median length of stay was longer in the study group compared with the historic cohort (8 vs 7 days; P = .02). There was no difference in 30-day mortality (3% vs 8%; P = .42) between the study group and the historic cohort (n = 77). CONCLUSIONS: Integrating inpatient palliative care consultation into the routine management of patients with CLTI is feasible and may improve emotional domains of health-related quality of life. This study laid the foundation for future studies on longer term outcomes of patients with CLTI undergoing palliative care consultation as well as the benefit of outpatient palliative care consultation in patients with CLTI.

Patient, caregiver, and oncologist predictions of quality of life in advanced cancer: Accuracy and associations with end-of-life care and caregiver bereavement.

BACKGROUND: Informed treatment decision-making necessitates accurate prognostication, including predictions about quality of life. AIMS: We examined whether oncologists, patients with advanced cancer, and caregivers accurately predict patients' future quality of life and whether these predictions are prospectively associated with end-of-life care and bereavement. MATERIALS & METHODS: We conducted secondary analyses of clinical trial data. Patients with advanced cancer (n = 156), caregivers (n = 156), and oncologists (n = 38) predicted patient quality of life 3 months into the future. Patients subsequently rated their quality of life 3 months later. Medical record data documented chemotherapy and emergency department (ED)/inpatient visits in the 30 days before death (n = 79 decedents). Caregivers self-reported on depression, anxiety, grief, purpose, and regret 7-months post-mortem. In mixed-effects models, patient, caregiver, and oncologist quality-of-life predictions at study entry were used to predict end-of-life care and caregiver outcomes, controlling for patients' quality of life at 3-month follow-up, demographic and clinical characteristics, and nesting within oncologists. RESULTS: Caregivers (P < 0.0001) and oncologists (P = 0.001) predicted lower quality of life than what patients actually experienced. Among decedents, 24.0% received chemotherapy and 54.5% had an ED/inpatient visit. When caregivers' predictions were more negative, patients were less likely to receive chemotherapy (P = 0.028) or have an ED/inpatient visit (P = 0.033), and caregivers reported worse depression (P = 0.002), anxiety (P = 0.019), and grief (P = 0.028) and less purpose in life (P < 0.001) 7-months post-mortem. CONCLUSION: When caregivers have more negative expectations about patients' quality of life, patients receive less intensive end-of-life care, and caregivers report worse bereavement outcomes.

Using natural language processing to explore heterogeneity in moral terminology in palliative care consultations.

BACKGROUND: High quality serious illness communication requires good understanding of patients' values and beliefs for their treatment at end of life. Natural Language Processing (NLP) offers a reliable and scalable method for measuring and analyzing value- and belief-related features of conversations in the natural clinical setting. We use a validated NLP corpus and a series of statistical analyses to capture and explain conversation features that characterize the complex domain of moral values and beliefs. The objective of this study was to examine the frequency, distribution and clustering of morality lexicon expressed by patients during palliative care consultation using the Moral Foundations NLP Dictionary. METHODS: We used text data from 231 audio-recorded and transcribed inpatient PC consultations and data from baseline and follow-up patient questionnaires at two large academic medical centers in the United States. With these data, we identified different moral expressions in patients using text mining techniques. We used latent class analysis to explore if there were qualitatively different underlying patterns in the PC patient population. We used Poisson regressions to analyze if individual patient characteristics, EOL preferences, religion and spiritual beliefs were associated with use of moral terminology. RESULTS: We found two latent classes: a class in which patients did not use many expressions of morality in their PC consultations and one in which patients did. Age, race (white), education, spiritual needs, and whether a patient was affiliated with Christianity or another religion were all associated with membership of the first class. Gender, financial security and preference for longevity-focused over comfort focused treatment near EOL did not affect class membership. CONCLUSIONS: This study is among the first to use text data from a real-world situation to extract information regarding individual foundations of morality. It is the first to test empirically if individual moral expressions are associated with individual characteristics, attitudes and emotions.

Prognostic accuracy of patients, caregivers, and oncologists in advanced cancer.

BACKGROUND: In caring for patients with advanced cancer, accurate estimation of survival is important for clinical decision making. The purpose of this study was to assess the accuracy of 2-year survival probabilities estimated by oncologists, patients, and caregivers and to identify demographic and clinical factors associated with prognostic accuracy. METHODS: This was a secondary observational analysis of data obtained from a cluster randomized controlled trial. Participants included 38 oncologists, 263 patients with advanced nonhematologic cancer, and 193 of their caregivers from clinics in Sacramento and Western New York. Discrimination within each group (oncologists, patients, caregivers) was evaluated using the C statistic, whereas calibration was assessed by comparing observed to predicted 2-year mortality using the chi-square statistic. RESULTS: The median survival from study entry was 18 months, and 41.8% of patients survived for 2 years. C statistics for oncologists, patients, and caregivers were 0.81 (95% CI, 0.76-0.86), 0.62 (95% CI, 0.55-0.68), and 0.72 (95% CI, 0.65-0.78), respectively; oncologists' predictions were better than the predictions of both patients (P = .001) and caregivers (P = .03). Oncologists also had superior calibration: their predictions of 2-year survival were similar to actual survival (P = .17), whereas patients' (P = .0001) and caregivers' (P = .003) predictions diverged significantly from actual survival. Although most oncologists' predictions were classified as realistic (62.0%), approximately one-half of patients' and caregivers' predictions (50.0% and 46.0%, respectively) were unduly optimistic. Among patients, nonwhite race and higher levels of social well-being predicted undue optimism (P < .05). CONCLUSIONS: Compared with oncologists, patients and caregivers displayed inferior prognostic discrimination, and their predictions were poorly calibrated, primarily because of overoptimism.

The contagion of optimism: The relationship between patient optimism and palliative care clinician overestimation of survival among hospitalized patients with advanced cancer.

OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another. METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months. RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66). CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.

Exercise interventions for individuals with advanced cancer: A systematic review.

Despite improvements in therapy a large proportion of individuals with cancer will have a shortened life expectancy because of advanced or metastatic disease. Advances in therapy have however, extended life in those with advanced cancer thus heightening the importance of living well and preventing decline. The burdens of disease and cancer therapy impair aerobic fitness, strength, physical function and quality of life (QOL). Fatigue, the most common side effect of cancer and cancer therapy can further deteriorate QOL. Exercise has the potential to improve aerobic fitness, physical function, control fatigue and enhance QOL. However, exercise interventions are not routinely provided to those with advanced cancer. We present a systematic literature review of outcomes from interventions that include exercise for patients with advanced cancer. Studies were reviewed if they included an advanced cancer population and an intervention with a component of exercise. Overall, exercise containing interventions resulted in improvements in measures of aerobic capacity (14 of 19 studies) strength (11 of 12 studies), and components of physical function (9 of 9 studies). Fatigue and QOL were identified to improve in slightly over half of all evaluated studies (11 of 19 studies and 10 of 19 studies for fatigue and QOL respectively). The numbers of total participants reporting improvements in QOL (60%) were greater than fatigue (45%). Exercise provided to individuals with advanced cancer maintains or improves fitness and physical function and may diminish fatigue and enhance QOL and should be considered as an intervention to prevent further health complications.

Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study.

BACKGROUND: Understanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI). METHODS: The PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records. RESULTS: One hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60% of them ultimately enrolled in the PCCRI (114/188), resulting in a 42% sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated. CONCLUSIONS: Epidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex "field" environment.

Palliative care education in U.S. medical schools.

CONTEXT: Medical educators in the U.S.A. perceive the teaching of palliative care competencies as important, medical students experience it as valuable and effective, and demographic and societal forces fuel its necessity. Although it is encouraged by the Association of American Medical Colleges, the only palliative care-related mandate in U.S. medical schools is the Liaison Committee on Medical Education directive that end-of-life (EoL) care be included in medical school curricula, reinforcing the problematic conflation of EoL and palliative care. FINDINGS: A review of US medical school surveys about the teaching of palliative and EoL care reveals varied and uneven approaches, ranging from 2 hours in the classroom on EoL to weeks of palliative care training or hospice-based clinical rotations. IMPLICATIONS: Palliative care competencies are too complex and universally important to be relegated to a minimum of classroom time, random clinical exposures, and the hidden curriculum. RECOMMENDATIONS: Given the reality of overstrained medical school curricula, developmentally appropriate, basic palliative care competencies should be defined and integrated into each year of the medical school curriculum, taking care to circumvent the twin threats of curricular overload and educational abandonment.

Somtimes: self organizing maps for time series clustering and its application to serious illness conversations.

There is demand for scalable algorithms capable of clustering and analyzing large time series data. The Kohonen self-organizing map (SOM) is an unsupervised artificial neural network for clustering, visualizing, and reducing the dimensionality of complex data. Like all clustering methods, it requires a measure of similarity between input data (in this work time series). Dynamic time warping (DTW) is one such measure, and a top performer that accommodates distortions when aligning time series. Despite its popularity in clustering, DTW is limited in practice because the runtime complexity is quadratic with the length of the time series. To address this, we present a new a self-organizing map for clustering TIME Series, called SOMTimeS, which uses DTW as the distance measure. The method has similar accuracy compared with other DTW-based clustering algorithms, yet scales better and runs faster. The computational performance stems from the pruning of unnecessary DTW computations during the SOM's training phase. For comparison, we implement a similar pruning strategy for K-means, and call the latter K-TimeS. SOMTimeS and K-TimeS pruned 43% and 50% of the total DTW computations, respectively. Pruning effectiveness, accuracy, execution time and scalability are evaluated using 112 benchmark time series datasets from the UC Riverside classification archive, and show that for similar accuracy, a 1.8× speed-up on average for SOMTimeS and K-TimeS, respectively with that rates vary between 1× and 18× depending on the dataset. We also apply SOMTimeS to a healthcare study of patient-clinician serious illness conversations to demonstrate the algorithm's utility with complex, temporally sequenced natural language. Supplementary Information: The online version contains supplementary material available at 10.1007/s10618-023-00979-9.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms.

CONTEXT: Gender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality - particularly openness - may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. OBJECTIVES: This study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. METHODS: Using data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers' Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. RESULTS: Of a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. CONCLUSION: Results suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers.

BACKGROUND: Communication about prognosis and treatment choices is essential for informed decision making in advanced cancer. This article describes an investigation designed to facilitate communication and decision making among oncologists, patients with advanced cancer, and their caregivers. METHODS/DESIGN: The Values and Options in Cancer Care (VOICE) Study is a National Cancer Institute sponsored randomized controlled trial conducted in the Rochester/Buffalo, NY and Sacramento, CA regions. A total of 40 oncologists, approximately 400 patients with advanced cancer, and their family/friend caregivers (one per patient, when available) are expected to enroll in the study. Drawing upon ecological theory, the intervention uses a two-pronged approach: oncologists complete a multifaceted tailored educational intervention involving standardized patient instructors (SPIs), and patients and caregivers complete a coaching intervention to facilitate prioritizing and discussing questions and concerns. Follow-up data will be collected approximately quarterly for up to three years. DISCUSSION: The intervention is hypothesized to enhance patient-centered communication, quality of care, and patient outcomes. Analyses will examine the effects of the intervention on key elements of physician-patient-caregiver communication (primary outcomes), the physician-patient relationship, shared understanding of prognosis, patient well-being, and health service utilization (secondary outcomes). TRIAL REGISTRATION: Clinical Trials Identifier: NCT01485627.

Palliative care communication: linking patients' prognoses, values, and goals of care.

Prognostic communication is a primary component of goals of care conversations in palliative care (PC) practice. Little is known about these conversations in the natural setting. This study's aim was to describe the processes of prognostic communication in PC goals of care consultations. Using line-by-line qualitative analysis, we examined prognostic conversation in 66 audio-taped PC consultations. We identified five processes by which clinicians link prognoses, values, and goals of care: (1) signposting the crossroads; (2) closing off a goal; (3) clarifying current path; (4) linking paths and patients' values; and (5) choosing among paths. The findings add to our understanding of PC consultation by describing how prognoses link with patients' values and choices in goals of care conversations.

The StoryListening Project: Feasibility and Acceptability of a Remotely Delivered Intervention to Alleviate Grief during the COVID-19 Pandemic.

Background: The events surrounding the COVID-19 pandemic have created heightened challenges to coping with loss and grief for family and friends of deceased individuals, as well as clinicians who experience loss of their patients. There is an urgent need for remotely delivered interventions to support those experiencing grief, particularly due to growing numbers of bereaved individuals during the COVID-19 pandemic. Objective: To determine the feasibility and acceptability of the brief, remotely delivered StoryListening storytelling intervention for individuals experiencing grief during the COVID pandemic. Setting/Subjects: A single-arm pilot study was conducted in the United States. Participants included adult English-speaking family members, friends, or clinicians of individuals who died during the COVID-19 pandemic. All participants engaged in a televideo StoryListening session with a trained StoryListening doula. Measurements: Participants completed a brief follow-up telephone interview two weeks after the StoryListening session. We describe enrollment and retention data to assess feasibility and conducted a deductive thematic analysis of the follow-up interview data to assess acceptability. Results: Sixteen clinicians and 48 friends/family members enrolled in the study (n = 64; 75% enrollment), 62 completed a StoryListening session; 60 completed the follow-up interview. Participants reported that the intervention was useful and offered a valuable opportunity to process their grief experience. Conclusions: The StoryListening intervention is feasible and acceptable for friends/family members and clinicians who have experienced grief during COVID. Our intervention may offer an accessible first-line option to address the increasing wave of bereavement-related distress and clinician burnout in the United States.

Protocol for a Scalable StoryListening Intervention for Grief-Related Loneliness During COVID-19.

Background: Social distancing during the COVID-19 pandemic limited how family, friends, and clinicians physically interacted with people who were dying and decreased communal opportunities for processing grief. These barriers can cause or exacerbate suffering due to loneliness while grieving. Purpose: In this article, we describe the protocol for a brief storytelling intervention designed to reduce loneliness among families, friends, and clinicians grieving the death of a person during the time of COVID-19. Methods: We trained four StoryListening doulas (SLDs) to hold a welcoming space and listen to stories with curiosity and openness. The intervention included a video StoryListening session and two brief questionnaires, filled out before and two weeks after the encounter, assessing loneliness and quality of life. During sessions, SLDs invited participants to share their story of loss in their own words and in as much detail as preferred. When participants felt a sense of story completion, SLDs shared validating statements and expressed gratitude to the participant for sharing. The video and audio for each participant's StoryListening encounter were recorded and the participant was offered an audio copy of their session.

An Acoustical and Lexical Machine-Learning Pipeline to Identify Connectional Silences.

Context: Developing scalable methods for conversation analytics is essential for health care communication science and quality improvement. Purpose: To assess the feasibility of automating the identification of a conversational feature, Connectional Silence, which is associated with important patient outcomes. Methods: Using audio recordings from the Palliative Care Communication Research Initiative cohort study, we develop and test an automated measurement pipeline comprising three machine-learning (ML) tools-a random forest algorithm and a custom convolutional neural network that operate in parallel on audio recordings, and subsequently a natural language processing algorithm that uses brief excerpts of automated speech-to-text transcripts. Results: Our ML pipeline identified Connectional Silence with an overall sensitivity of 84% and specificity of 92%. For Emotional and Invitational subtypes, we observed sensitivities of 68% and 67%, and specificities of 95% and 97%, respectively. Conclusion: These findings support the capacity for coordinated and complementary ML methods to fully automate the identification of Connectional Silence in natural hospital-based clinical conversations.

Methodological innovations to strengthen evidence-based serious illness communication.

BACKGROUND/OBJECTIVE: A growing population of those affected by serious illness, prognostic uncertainty, patient diversity, and healthcare digitalization pose challenges for the future of serious illness communication. Yet, there is paucity of evidence to support serious illness communication behaviors among clinicians. Herein, we propose three methodological innovations to advance the basic science of serious illness communication. RESULTS: First, advanced computation techniques - e.g. machine-learning techniques and natural language processing - offer the possibility to measure the characteristics and complex patterns of audible serious illness communication in large datasets. Second, immersive technologies - e.g., virtual- and augmented reality - allow for experimentally manipulating and testing the effects of specific communication strategies, and interactional and environmental aspects of serious illness communication. Third, digital-health technologies - e.g., shared notes and videoconferences - can be used to unobtrusively observe and manipulate communication, and compare in-person to digitally-mediated communication elements and effects. Immersive and digital health technologies allow integration of physiological measurement (e.g. synchrony or gaze) that may advance our understanding of patient experience. CONCLUSION/PRACTICE IMPLICATIONS: New technologies and measurement approaches, while imperfect, will help advance our understanding of the epidemiology and quality of serious illness communication in an evolving healthcare environment.

Developing a Direct Observation Measure of Therapeutic Connection in Psilocybin-Assisted Therapy: A Feasibility Study.

Context: Measuring therapeutic connection during psilocybin-assisted therapy is essential to understand underlying mechanisms, inform training, and guide quality improvement. Purpose: To evaluate the feasibility of directly observing indicators of therapeutic connection during psilocybin administration encounters. Methods: We evaluated audio and video data from a recent clinical trial for observable expressions of therapeutic connection as defined in proposed best-practice competencies (i.e., empathic abiding presence and interpersonal grounding). We selected the first four 8-hour encounters involving unique participants, therapists, and gender pairs. Each video was independently coded by three members of an interprofessional six-person team. Using a structured checklist, coders recorded start-stop times, the audible (i.e., speech prosody or words) and visible (i.e., body movements, eye gaze, and touch) cues marking the event, and the qualities of the interaction (e.g., expression of awe, trust, distress, and calmness). We assessed feasibility by observing the frequency, distribution, and overlap of cues and qualities coders used to identify and define moments of therapeutic connection. Results: Among the 2074 minutes of video, coders recorded 372 moments of therapeutic connection. Eighty-three percent were identified by at least two coders and 41% by all three. Coders used a combination of audible and visual cues to identify therapeutic connection in 51% of observed events (190/372). Both the cues and qualities of therapeutic connection expressions varied over the course of psilocybin temporal effects on states of consciousness. Conclusion: Direct observation of therapeutic human connection is feasible, sensitive to changes in states of consciousness and requires evaluation of audible and visual data.

Sentiment analysis of medical record notes for lung cancer patients at the Department of Veterans Affairs.

Natural language processing of medical records offers tremendous potential to improve the patient experience. Sentiment analysis of clinical notes has been performed with mixed results, often highlighting the issue that dictionary ratings are not domain specific. Here, for the first time, we re-calibrate the labMT sentiment dictionary on 3.5M clinical notes describing 10,000 patients diagnosed with lung cancer at the Department of Veterans Affairs. The sentiment score of notes was calculated for two years after date of diagnosis and evaluated against a lab test (platelet count) and a combination of data points (treatments). We found that the oncology specific labMT dictionary, after re-calibration for the clinical oncology domain, produces a promising signal in notes that can be detected based on a comparative analysis to the aforementioned parameters.

A novel Scale to Assess Palliative Care Patients' Experience of Feeling Heard and Understood.

CONTEXT: Patient experience of palliative care serves as an important indicator of quality and patient-centeredness. OBJECTIVES: To develop a novel patient-reported scale measuring ambulatory palliative care patients' experience of feeling heard and understood by their providers. METHODS: We used self-reported patient experience data collected via mixed-mode survey administration. We conducted an exploratory factor analysis (EFA) and an expert panel ranking exercise to reduce the 10-item set based on underlying dimensionality. We then used item response theory (IRT) to calibrate remaining items based on psychometric properties and test information and precision. We considered item-level fit and examined the standardized local dependence chi-square statistics. We evaluated candidate items for differential item functioning by survey mode. We evaluated the test-retest reliability and validity of the final scale. RESULTS: The EFA yielded a single factor (9/10 items had loadings > 0.80 on the single factor). We removed two items with the lowest factor loadings and ranked by the expert panel as being least reflective of the overall construct. IRT calibration of the remaining eight items showed high slopes (range 2.66 - 5.18); location parameters were all negative (range -0.90 - -0.36). We removed two more items based on local dependence indices and item-level fit. Combining psychometric information with the expert ratings we established the final 4-item scale, which was reliable (Cronbach's alpha = 0.84; polychoric correlation coefficient = 0.72) and had good convergent validity. CONCLUSIONS: This novel multi-item Feeling Heard and Understood scale can be used to measure and improve ambulatory palliative care patient experience.

Content of Tele-Palliative Care Consultations with Patients Receiving Dialysis.

Background: Little is known about the content of communication in palliative care telehealth conversations in the dialysis population. Understanding the content and process of these conversations may lead to insights about how palliative care improves quality of life. Methods: We conducted a qualitative analysis of video recordings obtained during a pilot palliative teleconsultation program. We recruited patients receiving dialysis from five facilities affiliated with an academic medical center. Palliative care clinicians conducted teleconsultation using a wall-mounted screen with a camera mounted on a pole and positioned mid-screen in the line of sight to facilitate direct eye contact. Patients used an iPad that was attached to an IV pole positioned next to the dialysis chair. Conversations were coded using a preexisting framework of themes and content from the Serious Illness Conversation Guide (SICG) and revised Edmonton Symptom Assessment System-Renal. Results: We recruited 39 patients to undergo a telepalliative care consultation while receiving dialysis, 34 of whom completed the teleconsultation. Specialty palliative care clinicians (3 physicians and 1 nurse practitioner) conducted 35 visits with 34 patients. Median (interquartile range) duration of conversation was 42 (28-57) minutes. Most frequently discussed content included sources of strength (91%), critical abilities (88%), illness understanding (85%), fears and worries (85%), what family knows (85%), fatigue (77%), and pain (65%). Process features such as summarizing statements (85%) and making a recommendation (82%) were common, whereas connectional silence (56%), and emotion expression (21%) occurred less often. Conclusions: Unscripted palliative care conversations in outpatient dialysis units through telemedicine exhibited many domains recommended by the SICG, with less frequent discussion of symptoms. Emotion expression was uncommon for these conversations that occurred in an open setting.