Interventions for Family Caregivers of Patients Receiving Palliative/Hospice Care at Home: A Scoping Review.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses (n = 18, 24%), followed by an interdisciplinary team (n = 16, 21%), a health care provider (n = 10, 13%), research staff (n = 10, 13%), social worker (n = 5, 7%), and others (n = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life (n = 20, 26%), followed by anxiety (n = 18, 24%) and burden (n = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies (n = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Patient and Clinician Stakeholder Perspectives on a Patient Portal Questionnaire Eliciting Illness and Treatment Understanding and Core Health-Related Values.

Introduction: Person-centered communication is foundational to cancer care. In pilot research, a questionnaire eliciting patients' illness and treatment understanding (ITU) and core health-related values (HRV) through the electronic patient portal demonstrated feasibility, acceptability, and efficacy. The aim of this study was to elicit stakeholder feedback to refine the design of the portal-based intervention, remain end-user centered, and optimize future system-wide integration. Methods: Between April and June 2023, we purposively sampled patients and clinicians from a previous pilot study to participate in a 20-30-minute semistructured interview about their opinions of and experiences with the portal questionnaire on ITU and HRV. An interdisciplinary coding team used a two-phase rapid analysis to identify themes, subthemes, and illustrative participant quotations. Results: Fourteen patients (mean age = 68 years) and 12 clinicians participated (total n = 26). Colorectal cancer was the commonest malignancy (64%) among patients. Clinicians were mostly physicians (50%), nurse practitioners (33%), and registered nurses (17%), with two-thirds having >15 years of experience in their specialty. Analysis generated four themes: (1) clinical utility of questionnaire, (2) barriers to questionnaire implementation, (3) considerations and strategies for modifying the questionnaire, and (4) considerations and strategies for questionnaire implementation. Themes captured key information about incorporating this questionnaire into clinical practice. Conclusion: Patients with cancer and their clinicians found a portal-based ITU and HRV questionnaire clinically useful to improve multiple aspects of person-centered communication. Participant recommendations about questionnaire timing and sharing of questionnaire responses with the clinical team will inform future questionnaire implementation and scaling in clinical settings.

Communicating with LGBTQ+ persons at end of life: A case-based analysis of interdisciplinary palliative clinician perspectives.

OBJECTIVE: Lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ+) persons with serious illness and their families often experience end-of-life (EOL) care disparities, such as homophobia and transphobia, disrespect and mistreatment, and exclusion of significant others or life partners. The aim of the study was to explore interdisciplinary clinicians' communication knowledge and priorities using a case of a gay man at EOL and his same-sex, cisgender spouse. METHODS: Interdisciplinary clinicians (n = 150) who participated in a national 3-day communication training program, rooted in Adult Learning Theory and supported by the National Cancer Institute, responded to open-ended questions about a composite case study emphasizing diversity challenges relevant to LGBTQ + communities in the EOL context. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. RESULTS: Participants from nursing (48%), social work (35%) and chaplaincy (17%) responded to the survey. Five themes emerged: 1) provision of patient-centered care; 2) legal and ethical factors inform care and decision making; 3) considerations of same-sex spouse or couple context; 4) dynamics and role of family of origin; and 5) elements of inclusive clinical care. CONCLUSIONS: LGBTQ + inclusive communication training is essential for all palliative clinicians to deliver culturally safe care. Our findings have implications for identifying unconscious bias, addressing discriminatory care, filling clinician knowledge gaps, and informing educational interventions to support LGBTQ + inclusion. Future research must focus on micro- and macro-level communication issues that shape the quality of palliative and EOL care for patients and chosen family members.

Integrating evidence-based communication principles into routine cancer care.

PURPOSE: The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. METHODS: Composite cases, communication skills blueprint, and visual conceptualization. RESULTS: High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, and sample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. CONCLUSION: Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routine oncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

Palliative Care Clinician Perspectives on Person-Centered End-of-Life Communication for Racially and Culturally Minoritized Persons with Cancer.

The aim of this study was to examine interdisciplinary clinicians' perceptions of priorities in serious illness communication and shared decision-making with racially and culturally minoritized persons at end of life. Clinicians (N = 152) read a detailed case study about a patient self-identifying as Black and American Indian who describes mistrust of the healthcare system. Participants then responded to three open-ended questions about communication strategies and approaches they would employ in providing care. We conducted a thematic analysis of participants' responses to questions using an iterative, inductive approach. Interdisciplinary clinicians from nursing (48%), social work (36%), and chaplaincy (16%), responded to the study survey. A total of four themes emerged: (1) person-centered, authentic, and culturally-sensitive care; (2) pain control; (3) approaches to build trust and connection; and (4) understanding communication challenges related to racial differences. Significant efforts have been made to train clinicians in culturally inclusive communication, yet we know little about how clinicians approach "real world" scenarios during which patients from structurally minoritized groups describe care concerns. We outline implications for identifying unconscious bias, informing educational interventions to support culturally inclusive communication, and improving the quality of end-of-life care for patients with cancer from minoritized groups.

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.

Effects of a Patient Question Prompt List on Question Asking and Self-Efficacy During Outpatient Palliative Care Appointments.

CONTEXT: Question prompt lists (QPLs) promote participation during medical appointments, including in the context of serious illness care. However, no studies have used parameters of a theoretical framework to examine the effects of QPL use in outpatient palliative care. OBJECTIVES: The current pilot randomized controlled trial evaluated use of a 25-question QPL during initial outpatient palliative care appointments. We applied tenets of Self-Efficacy Theory to investigate how use of a QPL affected appointment participation and perceived self-efficacy. METHODS: Participants were patients and care partners attending the patient's first palliative care appointment. Participants either received a QPL before the appointment (n = 29 appointments) or usual care (n = 30 appointments). Audio recordings of appointments were coded for total questions asked. Participants reported perceived self-efficacy in question asking pre- and postappointment. Analysis of variance was used to compare appointment participation between study conditions, and a linear mixed effects model was used to compare changes in ratings of perceived self-efficacy. RESULTS: Participants who received the QPL did not ask significantly more questions compared to participants in usual-care appointments. There was a main effect of time on self-efficacy in question asking, such that self-efficacy increased from pre- to postappointment, but there was no effect of the intervention. CONCLUSION: Despite their promise in previous studies, results of the current study suggest that QPLs may lack potency to shift patient and care partner question asking in palliative care appointments, and that other mechanisms outlined in Self-Efficacy Theory may characterize the relation between question asking and self-efficacy.

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.

Barriers and Facilitators to Effective Inpatient Palliative Care Consultations: A Qualitative Analysis of Interviews With Palliative Care and Nonpalliative Care Providers.

OBJECTIVE: To identify factors that hinder or facilitate the palliative care consultation team's (PCCT) successful collaboration with other providers from the perspectives of both PCCT and nonpalliative specialists. METHODS: Qualitative study, including semistructured interviews with PCCT and nonpalliative care providers from various specialties at 4 Midwestern hospitals. Interviews were audio-recorded and transcribed into written text documents for thematic analysis. Palliative care consultation team (n = 19) and nonpalliative care providers (n = 29) were interviewed at their respective hospital sites or via telephone. Palliative care consultation team providers included physicians, nurse practitioners, registered nurses, social workers, and one chaplain. Specialists included critical care physicians, surgeons, hospitalists, nephrologists, oncologists, and cardiologists. RESULTS: Six themes emerged reflecting barriers to and facilitators of successful collaboration between the PCCT and other providers. Primary barriers included attitudes about palliative care, lack of knowledge about the role of the PCCT, and patient and family resistance. Facilitators included marketing of the palliative care service and education about the expertise of the PCCT. CONCLUSION: In order to engage in more effective collaboration with other specialty providers, the PCCT may consider strategies including structured educational interventions, increased visibility in the hospital, and active marketing of the utility of palliative care across disciplines.

Knowledge of Palliative Care Among Community-Dwelling Adults.

OBJECTIVE: To identify what laypersons know about palliative care using the Palliative Care Knowledge Scale (PaCKS). A secondary aim was to establish preliminary normative data for the PaCKS. METHODS: A sample of 301 adults were recruited via Amazon's Mechanical Turk database. Participants were administered the PaCKS along with a demographic questionnaire. RESULTS: The mean score on the 13-item PaCKS was 5.25 (standard deviation = 4.77, range: 0-13), the median was 5, and the mode was 0, with a significant proportion of participants selecting "I don't know" for every item. Women scored significantly higher than men, and 45- to 54- and 55- to 64-year-olds scoring highest. The PaCKS was also significantly positively correlated with education. CONCLUSION: Broadly, laypersons lack knowledge about some key aspects of palliative care, though palliative care knowledge is highly variable across individuals and some groups. Targeted educational interventions are essential to improve knowledge of palliative care in order to increase access to this type of life-enhancing, supportive service.

Associations between Timing of Palliative Care Consults and Family Evaluation of Care for Veterans Who Die in a Hospice/Palliative Care Unit.

BACKGROUND: Palliative care consultations (PCC) improve end-of-life (EOL) care, although they may occur too late in an illness to effect the best outcomes. Evidence about the optimal timing of PCC is limited. OBJECTIVE: To examine the associations between PCC timing and bereaved families' evaluation of care. METHODS: A retrospective, cross-sectional analysis of data collected between October 2011 and September 2014 was conducted with 5,592 patients who died in a Veterans Affairs inpatient hospice/palliative care unit. The independent measure was the date of first documented PCC within 180 days of death. Outcomes came from the validated Bereaved Family Survey (BFS) and included one global and three subscale scores characterizing EOL care in the last month of life. RESULTS: After adjustment for patient and facility characteristics, family members of veterans whose first PCC occurred 91-180 days before death were more likely to rate overall care as "excellent" compared with those whose PCC occurred 0-7 days before death, 67.9% versus 62.1%, respectively (adjusted odds ratio = 1.37; confidence interval [95% CI] 1.08-1.73). Mean scores on two of the three subscales also were significantly higher for veterans receiving PCC 31-90 days before the veteran's death compared with those who had their first PCC 0-7 days before death: Respectful Care and Communication, 13.6 versus 13.4, respectively (ß = 0.26; 95% CI 0.11-0.41), and Emotional and Spiritual Support, 7.6 versus 7.4, respectively (ß = 0.22; 95% CI 0.03-0.41). CONCLUSIONS: Earlier PCC is associated with greater family satisfaction with care. Strategies that are aimed at conducting PCC earlier in life-limiting illness are needed.