Content Analysis of Serious Illness Conversation Documentation: Structured vs. Free-Text Information.

CONTEXT: Clear, accessible, and thorough documentation of serious illness conversations helps ensure that critical information patients share with clinicians is reflected in their future care. OBJECTIVES: We sought to characterize and compare serious illness conversations recorded two different ways in the electronic health record to better understand patterns of serious illness conversation documentation. METHODS: We performed content analysis of serious illness conversations documented in the electronic health record, whether documented via structured tab or free-text clinical notes, for patients (n=150) with advanced cancer who started a treatment associated with a poor prognosis between October 2020 and June 2022. A multidisciplinary team iteratively developed a codebook to classify serious illness conversation content (e.g., goals/hopes) on a preliminary sample (n=30), and two researchers performed mixed deductive-inductive coding on the remaining data (n=120). We reviewed documentation from 34 patients with serious illness conversations documentation in the structured tab only, 43 with documentation in only free-text clinical notes, and 44 with documentation of both types. We then compared content between documentation types. RESULTS: Information documented more frequently in structured tabs included fears/worries and illness understanding; clinical notes more often included treatment preferences, deliberations surrounding advance directives, function, and trade-offs. Qualitative insights highlight a range of length and detail across documentation types, and suggest notable authorship by palliative and social work clinicians. CONCLUSION: How serious illness conversations are documented in the electronic health record may impact the content captured. Future quality improvement efforts should seek to consolidate documentation sources to improve care and information retention.

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

Existential Care in Daily Nursing Practice.

ABSTRACT: Relationship-centered palliative nursing during serious illness requires existential care. Yet, multilevel systemic barriers hinder nurses' ability to provide this care. The authors suggest ways to navigate these barriers, highlighting existential care priorities that nurses can attend to in their daily practice. These include 1) maintaining a strengths-based orientation, 2) taking a life course perspective, 3) grounding care firmly in relationships, and 4) responding moment to moment. They propose that by emphasizing existential care in palliative nursing, we can create a more compassionate and human-centered health system.

Development of a keyword library for capturing PRO-CTCAE-focused "symptom talk" in oncology conversations.

Objectives: As computational methods for detecting symptoms can help us better attend to patient suffering, the objectives of this study were to develop and evaluate the performance of a natural language processing keyword library for detecting symptom talk, and to describe symptom communication within our dataset to generate insights for future model building. Materials and Methods: This was a secondary analysis of 121 transcribed outpatient oncology conversations from the Communication in Oncologist-Patient Encounters trial. Through an iterative process of identifying symptom expressions via inductive and deductive techniques, we generated a library of keywords relevant to the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) framework from 90 conversations, and tested the library on 31 additional transcripts. To contextualize symptom expressions and the nature of misclassifications, we qualitatively analyzed 450 mislabeled and properly labeled symptom-positive turns. Results: The final library, comprising 1320 terms, identified symptom talk among conversation turns with an F1 of 0.82 against a PRO-CTCAE-focused gold standard, and an F1 of 0.61 against a broad gold standard. Qualitative observations suggest that physical symptoms are more easily detected than psychological symptoms (eg, anxiety), and ambiguity persists throughout symptom communication. Discussion: This rudimentary keyword library captures most PRO-CTCAE-focused symptom talk, but the ambiguity of symptom speech limits the utility of rule-based methods alone, and limits to generalizability must be considered. Conclusion: Our findings highlight opportunities for more advanced computational models to detect symptom expressions from transcribed clinical conversations. Future improvements in speech-to-text could enable real-time detection at scale.

Toward a basic science of communication in serious illness.

High-quality communication can mitigate suffering during serious illness. Innovations in theory and technology present the opportunity to advance serious illness communication research, moving beyond inquiry that links broad communication constructs to health outcomes toward operationalizing and understanding the impact of discrete communication functions on human experience. Given the high stakes of communication during serious illness, we see a critical need to develop a basic science approach to serious illness communication research. Such an approach seeks to link "what actually happens during a conversation" - the lexical and non-lexical communication content elements, as well as contextual factors - with the emotional and cognitive experiences of patients, caregivers, and clinicians. This paper defines and justifies a basic science approach to serious illness communication research and outlines investigative and methodological opportunities in this area. A systematic understanding of the building blocks of serious illness communication can help identify evidence-informed communication strategies that promote positive patient outcomes, shape more targeted communication skills training for clinicians, and lead to more tailored and meaningful serious illness care.

Opportunities for Poetic Analysis in Qualitative Nursing Research.

BACKGROUND: The voices of people living with serious, life-limiting illnesses are often underrepresented in research. Furthermore, a biomedical bias toward treatment and stigma associated with illness prevents healthcare providers from engaging with topics critical for people living with serious illness, such as existential communication and inner strength. Poetry is an established method of analysis and dissemination in qualitative research but is underutilized by nursing researchers. OBJECTIVES: The purpose of this article is to demonstrate the inherent opportunities in using poetry in nursing research to highlight the voices and issues of people whose experiences are outside the assumed norms of the biomedical paradigm. METHODS: We apply methods of poetic analysis to qualitative data sets that highlight the voice of people living with serious illness-in naturally occurring palliative care conversations and dyadic interviews of people with dementia and their care partners. Methods of poetic analysis include poetic transcription and voice poems. RESULTS: Methods of poetic analysis allowed us to engage with the data reflexively to intensify and evoke the deeper meaning of narratives. Poetic analysis served to center the participant's voices by using their own words to demonstrate themes. Poems are a uniquely accessible method of disseminating complex findings, as poems relay layered cognitive and emotional meaning resonant of universal human experiences in a concise and relatable format. DISCUSSION: Especially in circumstances where participant's voices are underrepresented, poetic analysis enables nurse researchers to challenge normative assumptions and reimagine a difference-centered society. Our findings offer opportunities to incorporate poetry into clinical and research nursing training to better meet the needs of the populations we serve.

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

"If it's the time, it's the time": Existential communication in naturally-occurring palliative care conversations with individuals with advanced cancer, their families, and clinicians.

OBJECTIVE: To explore how patients with advanced cancer, their families, and palliative care clinicians communicate about existential experience during palliative care conversations. METHODS: We analyzed data from the Palliative Care Communication Research Initiative (PCCRI) - a multisite cohort study conducted between 2014 and 2016 involving hospitalized adults with advanced cancer who were referred for inpatient palliative care consultations at two academic medical centers. We used a qualitative descriptive approach paired with inductive content analysis to analyze a random subsample of 30 patients from the PCCRI study (contributing to 38 palliative care conversations). RESULTS: We found existential communication to be woven throughout palliative care conversations, with key themes related to: 1) time as a pressing boundary; 2) maintaining a coherent self; and 3) connecting with others. CONCLUSION: Communication about existential experience is omnipresent and varied in palliative care conversations between individuals with advanced cancer, their families, and clinicians. PRACTICE IMPLICATIONS: Clinicians can recognize that discussion of time, routines of daily life, and relationships in the clinical context may hold profound existential relevance in palliative care conversations. Understanding how patients and families talk about existential experience in conversation can create opportunities for clinicians to better meet these needs.

"I Had a Lot More Planned": The Existential Dimensions of Prognosis Communication with Adults with Advanced Cancer.

Background: Communication about prognosis is a key ingredient of effective palliative care. When patients with advanced cancer develop increased prognostic understanding, there is potential for existential distress to occur. However, the existential dimensions of prognosis communication are underexplored. Objective: To describe the existential dimensions of prognosis communication in naturally-occurring palliative care conversations. Methods: This study was an explanatory sequential mixed methods design. We analyzed a random subset of patients from the Palliative Care Communication Research Initiative (PCCRI) parent study (n = 34, contributing to 45 palliative care conversations). Data were based on audio-recorded and transcribed inpatient palliative care conversations between adults with advanced cancer, their families, and palliative care clinicians. We stratified the study sample by levels of prognosis communication, and qualitatively examined patterns of existential communication, comparing the intensity, frequency, and content, within and across levels. Results: Existential communication was more common, and of stronger intensity, within conversations with higher levels of prognosis communication. Conversations with more prognosis communication appeared to exhibit a shift toward the existential and away from the more physical nature of the serious illness experience. Conclusion: Existential and prognosis communication are intimately linked within palliative care conversations. Results highlight the multiplicity and mutuality of concerns that arise when contemplating mortality, drawing attention to areas of palliative care communication that warrant future research.

End-of-life decision making in the context of chronic life-limiting disease: a concept analysis and conceptual model.

BACKGROUND: Conceptual ambiguities prevent advancements in end-of-life decision making in clinical practice and research. PURPOSE: To clarify the components of and stakeholders (patients, caregivers, healthcare providers) involved in end-of-life decision making in the context of chronic life-limiting disease and develop a conceptual model. METHOD: Walker and Avant's approach to concept analysis. FINDINGS: End-of-life decision making is a process, not a discrete event, that begins with preparation, including decision maker designation and iterative stakeholder communication throughout the chronic illness (antecedents). These processes inform end-of-life decisions during terminal illness, involving: 1) serial choices 2) weighed in terms of potential outcomes 3) through patient and caregiver collaboration (attributes). Components impact patients' death, caregivers' bereavement, and healthcare systems' outcomes (consequences). DISCUSSION: Findings provide a foundation for improved inquiry into and measurement of the end-of-life decision making process, accounting for the dose, content, and quality the antecedent and attribute factors that collectively contribute to outcomes.

A concept analysis of the existential experience of adults with advanced cancer.

BACKGROUND: Attention to the existential dimension of an individual's experience during serious illness is important. However, existential concerns continue to be poorly defined in literature, leading to neglect in the clinical realm. PURPOSE: This concept analysis seeks to clarify the concept of the existential experience within the context of adults with advanced cancer. METHODS: Rodgers' evolutionary method of concept analysis was used. DISCUSSION: Existential experience in adults with advanced cancer is a dynamic state, preceded by confronting mortality, defined by diverse reactions to shared existential challenges related to the parameters of existence (body, time, others, and death), resulting in a dialectical movement between existential suffering and existential health, with capacity for personal growth. Personal factors and the ability to cope appear to influence this experience. CONCLUSION: These findings can drive future research and enhance clinician ability to attend to the existential domain, thereby improving patient experience at end-of-life.

The influence of executive capacity on selective attention and subsequent processing.

Recent investigations that suggest selective attention (SA) is dependent on top-down control mechanisms lead to the expectation that individuals with high executive capacity (EC) would exhibit more robust neural indices of SA. This prediction was tested by using event-related potentials (ERPs) to examine differences in markers of information processing across 25 subjects divided into two groups based on high vs. average EC, as defined by neuropsychological test scores. Subjects performed an experimental task requiring SA to a specified color. In contrast to expectation, individuals with high and average EC did not differ in the size of ERP indices of SA: the anterior Selection Positivity (SP) and posterior Selection Negativity (SN). However, there were substantial differences between groups in markers of subsequent processing, including the anterior N2 (a measure of attentional control) and the P3a (an index of the orienting of attention). EC predicted speed of processing at both early and late attentional stages. Individuals with lower EC exhibited prolonged SN, P3a, and P3b latencies. However, the delays in carrying out SA operations did not account for subsequent delays in decision making, or explain excessive orienting and reduced attentional control mechanisms in response to stimuli that should have been ignored. SN latency, P3 latency, and the size of the anterior N2 made independent contributions to the variance of EC. In summary, our findings suggest that current views regarding the relationship between top-down control mechanisms and SA may need refinement.

Does modulation of selective attention to features reflect enhancement or suppression of neural activity?

Numerous studies have demonstrated that selective attention to color is associated with a larger neural response under attend than ignore conditions, but have not addressed whether this difference reflects enhanced activity under attend or suppressed activity under ignore. In this study, a color-neutral condition was included, which presented stimuli physically identical to those under attend and ignore conditions, but in which color was not task relevant. Attention to color did not modulate the early sensory-evoked P1 and N1 components. Traditional ERP markers of early selection (the anterior Selection Positivity and posterior Selection Negativity) did not differ between the attend and neutral conditions, arguing against a mechanism of enhanced activity. However, there were markedly reduced responses under the ignore relative to the neutral condition, consistent with the view that early selection mechanisms reflect suppression of neural activity under the ignore condition.

Surprise? Early visual novelty processing is not modulated by attention.

This study investigated the influence of direction of attention on the early detection of visual novelty, as indexed by the anterior N2. The anterior N2 was measured in young subjects (n=32) under an attend and an ignore condition. Subjects were presented standard, target/rare, and perceptually novel visual stimuli under both conditions, but under the ignore condition, attention was directed toward an auditory n-back task. The size of the anterior N2 to novel stimuli did not differ between conditions and was significantly larger than the anterior N2 to all other stimulus types. Furthermore, under the ignore condition, the anterior N2 to visual novel stimuli was not affected by the level of difficulty of the auditory n-back task (3-back vs. 2-back). Our findings suggest that the early processing of visual novelty, as measured by the size of the anterior N2, is not strongly modulated by direction of attention.

Does compensatory neural activity survive old-old age?

One mechanism that may allow older adults to continue to successfully perform certain cognitive tasks is to allocate more resources than their younger counterparts. Most prior studies have not included individuals beyond their 70s. Here, we investigated whether compensatory increases in neural activity previously observed in cognitively high-performing young-old adults would continue into old-old age. Event-related potentials were recorded from 72 cognitively high performing subjects, aged 18 to 96 years old, while they participated in a subject-controlled novelty oddball paradigm in which they determined viewing duration of standard, target, and novel visual stimuli. Compared to young and middle-aged subjects, both young-old and old-old subjects exhibited an impairment of preliminary mismatch/match detection operations, indexed by an attenuated anterior N2 component. This may have placed a greater burden on the subsequent controlled decision-making process, indexed by the P3, necessitating the allocation of more resources. The relationship between age and resource allocation, as measured by P3 amplitude, from midlife to very old age (45-96 years old) followed an inverted u-shaped curve (quadratic function). It peaked between the late 60s and early 70s. Thereafter, there was an inverse relationship between age and resource appropriation. This relationship remained significant after controlling for differences in task performance and MMSE. Examining the size of the P3 component across different age groups suggests that although cognitively high performing adults in their early 80s exhibit a reduction in P3 amplitude, they have a relatively well-preserved capacity to appropriate resources. However, by the late 80s, there is a robust decline (relative to young-old adults) in the size of the P3. Our results indicate that when carrying out controlled processing linked to directing attention to salient events, cognitively high performers reach the boundary of their capacity, albeit relatively late in life. This limits their ability to appropriate additional resources as compensatory activity for age-related impairments in earlier visual processing, and suggests that such a mechanism does not tend to "survive" old-old age.

Mechanisms underlying age- and performance-related differences in working memory.

This study took advantage of the subsecond temporal resolution of ERPs to investigate mechanisms underlying age- and performance-related differences in working memory. Young and old subjects participated in a verbal n-back task with three levels of difficulty. Each group was divided into high and low performers based on accuracy under the 2-back condition. Both old subjects and low-performing young subjects exhibited impairments in preliminary mismatch/match detection operations (indexed by the anterior N2 component). This may have undermined the quality of information available for the subsequent decision-making process (indexed by the P3 component), necessitating the appropriation of more resources. Additional anterior and right hemisphere activity was recruited by old subjects. Neural efficiency and the capacity to allocate more resources to decision-making differed between high and low performers in both age groups. Under low demand conditions, high performers executed the task utilizing fewer resources than low performers (indexed by the P3 amplitude). As task requirements increased, high-performing young and old subjects were able to appropriate additional resources to decision-making, whereas their low-performing counterparts allocated fewer resources. Higher task demands increased utilization of processing capacity for operations other than decision-making (e.g., sustained attention) that depend upon a shared pool of limited resources. As demands increased, all groups allocated additional resources to the process of sustaining attention (indexed by the posterior slow wave). Demands appeared to have exceeded capacity in low performers, leading to a reduction of resources available to the decision-making process, which likely contributed to a decline in performance.