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.

Acceptability of psilocybin-assisted group therapy in patients with cancer and major depressive disorder: Qualitative analysis.

BACKGROUND: The present study explored the acceptability of psilocybin-assisted group therapy from the perspective of patients with cancer and depression who participated in a clinical trial assessing the safety and efficacy of this novel intervention. METHODS: Guided by the conceptual framework of acceptability, the authors conducted semi-structured interviews with participants of the psilocybin trial. Data were analyzed using template and thematic analyses. RESULTS: Participants' (n = 28) perspectives on the acceptability of the group and simultaneous sessions was generally positive, both in terms of safety and efficacy: first, the groups contributed to increase participants' sense of safety and preparedness as they were engaging in the therapy; and second, the groups fostered a sense of connection and of belonging, which served to enrich and deepen the meaning of participants' experience, ultimately opening a dimension of self-transcendence and compassion. Other subthemes related to factors influencing the acceptability of the group approach included: 1) the importance of the therapeutic framework, 2) the complementary value of individual sessions, 3) disruptive factors related to the group and/or simultaneous setting, and 4) opportunities and challenges related to group size and how to structure interactions. CONCLUSIONS: This study enhances understanding of what promotes acceptability of the psilocybin-assisted therapy group model for the treatment of MDD in cancer patients. PLAIN LANGUAGE SUMMARY: We conducted exit interviews with participants of a phase 2 trial of psilocybin-assisted therapy (PAT) conducted in a community cancer center, to assess the acceptability of a novel psilocybin delivery model combining simultaneous individual therapy and group sessions. Our findings support the acceptability of this intervention and suggest that in addition to being feasible, it might also enhance participants' perceived safety and efficacy compared to uniquely individual or group delivery models of PAT. Our analysis highlights critical factors conditioning acceptability and suggests new ways PAT may be scaled and integrated into cancer care.

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.

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.

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.

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.

Characteristics of self-care interventions for patients with a chronic condition: A scoping review.

BACKGROUND: Self-care is a fundamental element of treatment for patients with a chronic condition and a major focus of many interventions. A large body of research exists describing different types of self-care interventions, but these studies have never been compared across conditions. Examination of heterogeneous interventions could provide insights into effective approaches that should be used in diverse patient populations. OBJECTIVES: To provide a comprehensive and standardized cross-condition overview of interventions to enhance self-care in patients with a chronic condition. Specific aims were to: 1) identify what self-care concepts and behaviors are evaluated in self-care interventions; 2) classify and quantify heterogeneity in mode and type of delivery; 3) quantify the behavior change techniques used to enhance self-care behavior; and 4) assess the dose of self-care interventions delivered. DESIGN: Scoping review DATA SOURCES: Four electronic databases - PubMed, EMBASE, PsychINFO and CINAHL - were searched from January 2008 through January 2019. ELIGIBILITY CRITERIA FOR STUDY SELECTION: Randomized controlled trials (RCTs) with concealed allocation to the intervention were included if they compared a behavioral or educational self- care intervention to usual care or another self-care intervention and were conducted in adults. Nine common chronic conditions were included: hypertension, coronary artery disease, arthritis, chronic kidney disease, heart failure, stroke, asthma, chronic obstructive lung disease, and type 2 diabetes mellitus. Diagnoses that are psychiatric (e.g. schizophrenia), acute rather than chronic, or benefitting little from self-care (e.g. dementia) were excluded. Studies had to be reported in English with full-text available. RESULTS: 9309 citations were considered and 233 studies were included in the final review. Most studies addressed type 2 diabetes mellitus (n = 85; 36%), hypertension (n = 32; 14%) or heart failure (n = 27; 12%). The majority (97%) focused on healthy behaviors like physical activity (70%), dietary intake (59%), and medication management (52%). Major deficits found in self-care interventions included a lack of attention to the psychological consequences of chronic illness, technology and behavior change techniques were rarely used, few studies focused on helping patients manage signs and symptoms, and the interventions were rarely innovative. Research reporting was generally poor. CONCLUSIONS: Major gaps in targeted areas of self-care were identified. Opportunities exist to improve the quality and reporting of future self-care intervention research. Registration: The study was registered in the PROSPERO database (#123,719).

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 Role of the Advanced Practice Nurse in Geriatric Oncology Care.

OBJECTIVES: To describe how the Advanced Practice Nurse (APN) is uniquely suited to meet the needs of older adults throughout the continuum of cancer, to explore the progress that APNs have made in gero-oncology care, and make suggestions for future directions. DATA SOURCE: Google Scholar, PubMed, and CINAHL. Search terms included: "gero-oncology," "geriatric oncology," "Advanced Practice Nurse," "Nurse Practitioner," "older adult," "elderly," and "cancer." CONCLUSION: Over the last decade, APNs have made advances in caring for older adults with cancer by playing a role in prevention, screening, and diagnosis; through evidence-based gero-oncology care during cancer treatment; and in designing tailored survivorship care models. APNs must combat ageism in treatment choice for older adults, standardize comprehensive geriatric assessments, and focus on providing person-centered care, specifically during care transitions. IMPLICATIONS FOR NURSING PRACTICE: APNs are well-positioned to help understand the complex relationship between risk factors, geriatric syndromes, and frailty and translate research into practice. Palliative care must expand beyond specialty providers and shift toward APNs with a focus on early advanced care planning. Finally, APNs should continue to establish multidisciplinary survivorship models across care settings, with a focus on primary care.