"A little bit different now": Impacts of caregiving for parent with cancer on psychosocial development in emerging and young adulthood.

Serving as a family caregiver for, and ultimately losing, a parent with advanced cancer in emerging and young adulthood has substantial, life phase-specific implications for psychosocial development. This qualitative study characterizes domains of psychosocial development impacted by cancer caregiving and parental death in this life phase. As part of a larger study, 33 bereaved emerging/young adult caregivers of parents who died following advanced cancer completed semi-structured interviews. A thematic analysis leveraging the constant comparative method was conducted by two coders and generated three themes, which described impacts of caregiving on: identity, life path, and relational intimacy and roles. Analyses also defined specific outcomes within these domains. Findings suggest that cancer caregiving-loss experiences can greatly influence developmental pursuits in this life phase. Findings validate a range of possible psychosocial impacts these caregivers may experience and can guide development of supportive resources for this growing subgroup of bereaved family caregivers.

Empathic communication between clinicians, patients, and care partners in palliative care encounters.

OBJECTIVE: Palliative care encounters often involve empathic opportunities conveyed by patients and their care partners. In this secondary analysis, we examined empathic opportunities and clinician responses with attention to how presence of multiple care partners and clinicians shapes empathic communication. METHODS: We used the Empathic Communication Coding System (ECCS) to characterize emotion-focused, challenge-focused, and progress-focused empathic opportunities and responses in 71 audio-recorded palliative care encounters in the US. RESULTS: Patients expressed more emotion-focused empathic opportunities than did care partners; care partners expressed more challenge-focused empathic opportunities than did patients. Care partners initiated empathic opportunities more frequently when more care partners were present, though they expressed fewer as the number of clinicians increased. When more care partners and more clinicians were present, clinicians had fewer low-empathy responses. CONCLUSION: The number of care partners and clinicians present affect empathic communication. Clinicians should be prepared for empathic communication focal points to shift depending on the number of care partners and clinicians present. PRACTICE IMPLICATIONS: Findings can guide development of resources to prepare clinicians to meet emotional needs in palliative care discussions. Interventions can coach clinicians to respond empathically and pragmatically to patients and care partners, particularly when multiple care partners are in attendance.

A Mixed-Method Examination of Emerging and Young Adult Cancer Caregivers' Experiences during the COVID-19 Pandemic.

Advanced cancer caregivers in emerging and young adulthood (EYACs; ages 18-35) are an understudied yet vulnerable caregiving population. The COVID-19 pandemic created new challenges for advanced cancer caregivers but also created unique contexts from which caregivers sometimes benefited. To understand how the pandemic may have positively and negatively impacted their caregiving and bereavement experiences, we examined EYACs' experiences of caring for and losing a parent with advanced cancer during the pandemic in comparison to those of EYACs with a parent who died outside the context of the pandemic. Eligible EYACs completed an online survey and semi-structured interview. Quantitative analyses compared responses for pre-pandemic EYACS (n = 14) and pandemic EYACs (n = 26). A thematic analysis of the interview transcripts of pandemic EYACS (n = 14) was conducted. Pandemic EYACs experienced non-significant but higher communal coping, benefit finding, negative emotional experiences, and caregiver strain than pre-pandemic EYACs. Thematic analysis revealed that the pandemic negatively affected EYACs' caregiving efficacy, personal well-being, interpersonal dynamics, and bereavement; shifts to remote work and schooling were reported as benefits. The findings can inform the design of resources to support EYACs whose parents died during the pandemic and who are navigating the healthcare system today.

Empathic Communication in Specialty Palliative Care Encounters: An Analysis of Opportunities and Responses.

Background: Although empathic responding is considered a core competency in specialty palliative care (PC), patterns of empathic communication in PC encounters are not well understood. Objectives: In this secondary analysis, we delineate types and frequency of empathic communication and examine relationships between patient empathic opportunities and clinician responses. Design: We used the Empathic Communication Coding System to analyze empathic opportunities across three types: emotion (i.e., negative affective state), progress (i.e., stated recent positive life event or development), and challenge (i.e., stated problem or recent, negative life-changing event) and clinician responses. Setting/Subjects: Transcripts from a pilot randomized trial of communication coaching in specialty PC encounters (N = 71) audio-recorded by 22 PC clinicians at two sites in the United States: an academic health system and a community-based hospice and PC organization. Results: Empathic opportunities were frequent across encounters; clinicians often responded empathically to those opportunities (e.g., confirming or acknowledging patients' emotions or experiences). Even though challenge empathic opportunities occurred most frequently, clinicians responded empathically more often to progress opportunities (i.e., 93% of the time) than challenge opportunities (i.e., 75% of the time). One in 12 opportunities was impeded by the patient or a family member changing the topic before the clinician could respond. Conclusions: PC patients frequently express emotions, share progress, or divulge challenges as empathic opportunities. Clinicians often convey empathy in response and can differentiate their empathic responses based on the type of empathic opportunity. PC communication research and training should explore which empathic responses promote desired patient outcomes.

Quality of Life for Older Cancer Patients: Relation of Psychospiritual Distress to Meaning-Making During Dignity Therapy.

BACKGROUND: Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested. AIM: The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy. DESIGN: Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions. PARTICIPANTS: Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited. RESULTS: Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1-12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = -.56). CONCLUSION: Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

Applying the Care and Communication Bundle to Promote Palliative Care in a Neuro-Intensive Care Unit: Why and How.

Background: Delivery of palliative care in neurointensive care units (neuro-ICUs) can be inconsistent, often due to absence of formal care triggers. The Care and Communication Bundle (CCB) of Quality Indicators provides a standardized process to deliver effective palliative care services in ICUs, but application of these indicators in this setting has not yet been systemically assessed. Objectives: To evaluate the fit of a CCB in the neuro-ICU through a novel scoring system and identify barriers to adherence. Design: CCB standards for a neuro-ICU were delineated. Assessment of documented indicators and barriers was conducted through electronic medical record retrospective review. Setting/Subjects: A 30-bed neuro-ICU in a large Academic Medical Center in the Southeastern United States. Chart reviews were conducted for 133 critically ill neurology and neurosurgery patients who expired between November 2018 and January 2020. Results: Results demonstrate moderate adherence to CCB standards, including excellent consistency in establishment of patient-centered communication and referral to supportive services (e.g., social work, spiritual support). Identified areas for improvement include documentation of patient and family involvement in care process (i.e., advance directive completion, interdisciplinary team meetings). Conclusions: Application of the CCB in the neuro-ICU is useful for examining adherence to time-based triggers of palliative care standards. The novel scoring system offers opportunities to motivate improvement and reduce variation in palliative care integration.

Palliative Care Services in the NeuroICU: Opportunities and Persisting Barriers.

BACKGROUND: End-of-life (EOL) supportive care, including palliative and hospice services, is an area of increasing importance in critical care. Neurointensivists face unique challenges in providing timely supportive care to terminally ill patients expected to expire in the NeuroICU. OBJECTIVE: This study explored the extent of effective utilization of, and recorded barriers to, palliative and hospice services in a dedicated 30-bed NeuroICU at a large academic medical center. DESIGN: A retrospective chart review of patients who expired in the NeuroICU was conducted. The timeline from patient admission to arrival of palliative care services was traced. Qualitative review of chart notes was used to identify barriers to provision of palliative services. SETTING: A total of 330 patients expired in the NeuroICU during the study period, including 176 from the neurology and 154 from the neurosurgical service. RESULTS: Across services, 146 expired patients were never referred to palliative care or hospice services. Of those referred, over one-third were referred more than 4 days past admission to the NeuroICU. On average, patients were referred with less than 1 day before expiration. Common barriers to referral for supportive services were documented (e.g., patient expected to expire, family declined service). CONCLUSIONS: Despite benefits of palliative care and an in-hospital hospice opportunity, we identified lack of referral, and particularly delays in referral to services as significant barriers. Our study highlights these as missed opportunities for patients and families to receive maximum benefits from these services. Future research should solidify triggers for EOL services in this setting.

Providers' Perspectives on Palliative Care in a Neuromedicine-Intensive Care Unit: End-of-Life Expertise and Barriers to Referral.

OBJECTIVE: This study identifies health care providers' perspectives on palliative care at end of life (EOL) in a neuromedicine-intensive care unit (Neuro-ICU) and barriers to providing palliative care. BACKGROUND: Provider's EOL expertise is crucial in making timely referrals to palliative care as expectation of patient death can be high. Barriers to referral need to be clearly identified so as to engage quality initiatives that improve EOL care delivery. DESIGN AND PARTICIPANTS: The study is a survey design using a mixed-methods approach. Providers at a large academic medical center, including doctors, nurses, and social workers, completed a quality improvement survey. MEASUREMENTS: Forty-one providers responded to Likert-type scales assessing their perspectives on palliative care. Their EOL expertise was independently assessed. In addition, barriers to palliative care referral were collected using a checklist and open-ended responses. The latter were reliably content analyzed through a card-sort technique. RESULTS: Three palliative care perspectives were identified: foundational perspective, comfort-care perspective, and holistic perspective. Regression analysis shows that providers' perspectives are differentially related to their EOL expertise. Frequencies of provider-reported barriers to referring patients to palliative care (e.g., lack of care coordination) were determined. CONCLUSIONS: Health care providers hold multiple perspectives on what they consider palliative care. Their perspectives are related systematically to different aspects of their EOL expertise. In-house training and quality initiatives could focus on unifying providers' perspectives to create a common language for understanding palliative care. Eliminating individual, intergroup, and organizational barriers is necessary for creating an optimal environment for patients and their families who find themselves, often suddenly, in a Neuro-ICU.