Telehealth vs In-Person Early Palliative Care for Patients With Advanced Lung Cancer: A Multisite Randomized Clinical Trial.

Importance: Numerous studies show that early palliative care improves quality of life and other key outcomes in patients with advanced cancer and their caregivers, although most lack access to this evidence-based model of care. Objective: To evaluate whether delivering early palliative care via secure video vs in-person visits has an equivalent effect on quality of life in patients with advanced non-small cell lung cancer (NSCLC). Design, Setting, and Participants: Randomized, multisite, comparative effectiveness trial from June 14, 2018, to May 4, 2023, at 22 US cancer centers among 1250 patients within 12 weeks of diagnosis of advanced NSCLC and 548 caregivers. Intervention: Participants were randomized to meet with a specialty-trained palliative care clinician every 4 weeks either via video visit or in person in the outpatient clinic from the time of enrollment and throughout the course of disease. The video visit group had an initial in-person visit to establish rapport, followed by subsequent virtual visits. Main Outcomes and Measures: Equivalence of the effect of video visit vs in-person early palliative care on quality of life at week 24 per the Functional Assessment of Cancer Therapy-Lung questionnaire (equivalence margin of ±4 points; score range: 0-136, with higher scores indicating better quality of life). Participants completed study questionnaires at enrollment and at weeks 12, 24, 36, and 48. Results: By 24 weeks, participants (mean age, 65.5 years; 54.0% women; 82.7% White) had a mean of 4.7 (video) and 4.9 (in-person) early palliative care encounters. Patient-reported quality-of-life scores were equivalent between groups (video mean, 99.7 vs in-person mean, 97.7; difference, 2.0 [90% CI, 0.1-3.9]; P = .04 for equivalence). Rate of caregiver participation in visits was lower for video vs in-person early palliative care (36.6% vs 49.7%; P < .001). Study groups did not differ in caregiver quality of life, patient coping, or patient and caregiver satisfaction with care, mood symptoms, or prognostic perceptions. Conclusions and Relevance: The delivery of early palliative care virtually vs in person demonstrated equivalent effects on quality of life in patients with advanced NSCLC, underscoring the considerable potential for improving access to this evidence-based care model through telehealth delivery. Trial Registration: ClinicalTrials.gov Identifier: NCT03375489.

Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles.

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.

Disrespectful and inadequate palliative care to transgender persons.

OBJECTIVES: The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners. METHODS: A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care. RESULTS: Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient's gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner. SIGNIFICANCE OF RESULTS: These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient's or spouse's/partner's gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient's wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

Disrespectful and inadequate palliative care to lesbian, gay, and bisexual patients.

OBJECTIVES: The study aims to describe inadequate, disrespectful, and abusive palliative and hospice care received by lesbian, gay, and bisexual (LGB) patients and their spouses/partners due to their sexual orientation or gender identity. METHODS: A national sample of 865 healthcare professionals recruited from palliative and hospice care professional organizations completed an online survey. Respondents were asked to describe their observations of inadequate, disrespectful, or abusive care to LGB patients and their spouses/partners. RESULTS: There were 15.6% who reported observing disrespectful care to LGB patients, 7.3% observed inadequate care, and 1.6% observed abusive care; 43% reported discriminatory care toward the spouses/partners. Disrespectful care to LGB patients included insensitive and judgmental attitudes and behaviors, gossip and ridicule, and disrespect of the spouse/partner. Inadequate care included denial of care; care that was delayed incomplete, or rushed; dismissive or antagonistic treatment; privacy and confidentiality violations; and dismissive treatment of the spouse/partner. SIGNIFICANCE OF RESULTS: These findings provide evidence of discrimination faced by LGB patients and partners while receiving care for serious illness. Hospice and palliative care programs should promote respectful, inclusive, and affirming care for the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community, including policies and practices that are welcoming and supportive to both employees and patients. Staff at all levels should be trained to create safe and respectful environments for LGBTQ patients and their families.

Top Ten Tips Palliative Care Clinicians Should Know About Behavioral Pain Management for Persistent Pain.

Seriously ill patients often experience persistent pain. As a part of a comprehensive repertoire of pain interventions, palliative care clinicians can help by using behavioral pain management. Behavioral pain management refers to evidence-based psychosocial interventions to reduce pain intensity and enhance functional outcomes and quality of life. Conceptualized using the biopsychosocial model, techniques involve promoting helpful behaviors (e.g., activity pacing, stretching, and relaxation exercises) and modifying underlying patterns of thinking, feeling, and communicating that can exacerbate pain. The authors have expertise in pain management, clinical health psychology, geropsychology, behavioral science, and palliative medicine. The article reviews the current evidence for behavioral interventions for persistent pain and provides 10 recommendations for behavioral pain management.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

Practice Improvement Projects in an Interdisciplinary Palliative Care Training Program.

CONTEXT: Demand for palliative care (PC) continues to increase with an insufficient number of specialists to meet the need. This requires implementation of training curricula to expand the workforce of interdisciplinary clinicians who care for persons with serious illness. OBJECTIVES: To evaluate the impact of utilizing individual practice improvement projects (PIP) as part of a longitudinal PC curriculum, the Coleman Palliative Medicine Training Program (CPMTP-2). METHODS: Participants developed their PIPs based on their institutional needs and through a mentor, and participated in monthly meetings and bi-annual conferences, thereby allowing for continued process improvement and feedback. RESULTS: Thirty-seven interdisciplinary participants implemented 30 PIPs encompassing 7 themes: (1) staff education; (2) care quality and processes; (3) access to care; (4) documentation of care delivered; (5) new program development; (6) assessing gaps in care/patient needs; and (7) patient/family education. The majority of projects did achieve completion, with 16 of 30 projects reportedly being sustained several months after conclusion of the required training period. Qualitative feedback regarding mentors' expertise and availability was uniformly positive. CONCLUSION: The CPMTP-2 demonstrates the positive impact of PIPs in the development of skills for interdisciplinary learners as part of a longitudinal training program in primary PC. Participation in a PIP with administrative support may lead to operational improvement within PC teams.

The Effect of Triggered Palliative Medicine Consults on Nurse Moral Distress in the Medical Intensive Care Unit.

PURPOSE: Moral distress in the intensive care unit contributes to negative emotional experiences in nurses and adversely affects patient care. This prospective cohort study evaluates an intervention designed to improve nurse moral distress in the medical intensive care unit and assesses patient outcomes which may improve moral distress. METHODS: Nurse moral distress was measured before and after an intervention of triggered palliative consults and scheduled family meetings in the intensive care unit during the COVID-19 pandemic. Patient outcomes in the intervention medical intensive care unit were compared to a control group. RESULTS: Forty-eight nurses (n = 48/78, 62%) completed the pre-intervention survey and 33 (n = 33/78, 42%) completed the post-intervention survey. Nurse moral distress using the MMD-HP scale pre- and post-intervention (122.5 vs. 134.0, P = 0.1210) was not statistically different. Intervention group patients (n = 57/64, 89%) had earlier transition to do not resuscitate status (hazard ratio 2.1, 95% CI 1.1-4.0, P = 0.0294), higher rate of documented alternate decision makers (100% vs. 61%, P < 0.0001), and higher rate discharged to a facility (28% vs. 14%) or hospice (19% vs. 7%) (P = 0.0090). Intervention group patients with a do not resuscitate (DNR) order had lower median length of stay in the intensive care unit (4 days vs. 13 days, P = 0.0004) and hospital (10 days vs. 21 days, P = 0.0005), and lower median total hospital costs per patient ($39,067 vs. $116,476, P = 0.0029) when compared control group patients with a DNR order. CONCLUSION: Triggered palliative consults with scheduled family meetings were not associated with change in nurse moral distress. More research is needed to uncover methods to improve nurse moral distress in the intensive care unit.

Improving the Hospice and Palliative Care Experiences of LGBTQ Patients and Their Caregivers.

Primary care providers often express a desire to be more involved with their patients as they transition to hospice care. Given that these providers have a central role in the care of their patients, they have the potential to significantly improve the experiences of lesbian, gay, bisexual, transgender, and queer patients who face serious illnesses. This article discusses the barriers to quality hospice and palliative care experienced by many sexual and gender minorities, as well as specific ways in which primary care physicians can promote equitable end-of-life care.

Association of Race with End-of-Life Treatment Preferences in Older Adults with Cancer Receiving Outpatient Palliative Care.

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.

Interim Analysis of Attrition Rates in Palliative Care Study on Dignity Therapy.

A routine threat to palliative care research is participants not completing studies. The purpose of this analysis was to quantify attrition rates mid-way through a palliative care study on Dignity Therapy and describe the reasons cited for attrition. Enrolled in the study were a total of 365 outpatients with cancer who were receiving outpatient specialty palliative care (mean age 66.7 ± 7.3 years, 56% female, 72% White, 22% Black, 6% other race/ethnicity). These participants completed an initial screening for cognitive status, performance status, physical distress, and spiritual distress. There were 76 eligible participants who did not complete the study (58% female, mean age 67.9 ± 7.3 years, 76% White, 17% Black, and 7% other race). Of those not completing the study, the average scores were 74.5 ± 11.7 on the Palliative Performance Scale and 28.3 ± 1.5 on the Mini-Mental Status Examination, whereas 22% had high spiritual distress scores and 45% had high physical distress scores. The most common reason for attrition was death/decline of health (47%), followed by patient withdrawal from the study (21%), and patient lost to follow-up (21%). The overall attrition rate was 24% and within the a priori projected attrition rate of 20%-30%. Considering the current historical context, this interim analysis is important because it will serve as baseline data on attrition prior to the outbreak of the COVID-19 pandemic. Future research will compare these results with attrition throughout the rest of the study, allowing analysis of the effect of the COVID-19 pandemic on the study attrition.

Study of Shadowing Experiences among Chaplains in the Coleman Palliative Medicine Fellowship.

While shadowing is a relatively common practice in the education of many health professionals, it is not widely used in chaplaincy education. Findings from our qualitative study of 12 chaplains who participated in the Coleman Palliative Medicine Training Program suggest it may offer benefits for practicing chaplains. In interviews with seven fellows who shadowed more experienced palliative care (PC) chaplains and the five mentors who were shadowed at their work settings, participants reported opportunities for mutual learning, self-reflection, and collegiality. Fellows observed how members of a PC team collaborate and contribute equally to the care of patients. Mentors found shadowing was a rare opportunity to share their chaplaincy practice with colleagues. It helped them to appreciate different aspects of their work settings and to distinguish between PC and generalist chaplaincy. We discuss the challenges participants experienced while shadowing and offer recommendations for incorporating the practice more widely into chaplaincy education.

Expanding the Interdisciplinary Palliative Medicine Workforce: A Longitudinal Education and Mentoring Program for Practicing Clinicians.

CONTEXT: The disparity between gaps in workforce and availability of palliative care (PC) services is an increasing issue in health care. To meet the demand, team-based PC requires additional educational training for all clinicians caring for persons with serious illness. OBJECTIVES: To describe the educational methodology and evaluation of an existing regional interdisciplinary PC training program that was expanded to include chaplain and social worker trainees. METHODS: From 2015 to 2017, 26 social workers, chaplains, physicians, nurses, and advanced practice providers representing 22 health systems completed a two-year training program. The curriculum comprises biannual interdisciplinary conferences, individualized mentoring and clinical shadowing, self-directed e-learning, and profession-focused seminar series for social workers and chaplains. Site-specific practice improvement projects were developed to address gaps in PC at participating sites. RESULTS: PC and program development skills were self-assessed before and after training. Among 12 skills common to all disciplines, trainees reported significant increases in confidence across all 12 skills and significant increases in frequency of performing 11 of 12 skills. Qualitative evaluation identified a myriad of program strengths and challenges regarding the educational format, mentoring, and networking across disciplines. CONCLUSION: Teaching PC and program development knowledge and skills to an interdisciplinary regional cohort of practicing clinicians yielded improvements in clinical skills, implementation of practice change projects, and a sense of belonging to a supportive professional network.

Racial and ethnic disparity in palliative care and hospice use.

OBJECTIVES: Prior research has demonstrated differences across race and ethnicity, as well as across geographic location, in palliative care and hospice use for patients near the end of life. However, there remains inconsistent evidence regarding whether these disparities are explained by hospital-level practice variation. The goals of this study were to evaluate whether inpatient palliative care consultation use and discharge to hospice differed by race/ethnicity and whether hospital-level variations explained these differences. STUDY DESIGN: Retrospective, cross-sectional study. METHODS: This study evaluated 5613 patients who were discharged to hospice or died during their hospital stay between 2012 and 2014 in 4 urban hospitals with an inpatient palliative care service. The main outcomes were receipt of an inpatient palliative care consultation and discharge to hospice. RESULTS: The sample was 43% white, 44% African American, and 13% Hispanic. After adjusting for patient characteristics and hospital site, race/ethnicity was not significantly associated with receipt of inpatient palliative care consultation. Hispanic race/ethnicity was associated with a higher likelihood of discharge to hospice (odds ratio, 1.22; P = .036), and inpatient palliative care consultation was associated with 4 times higher likelihood of discharge to hospice (P <.001). Hospital site was also associated with both receipt of inpatient palliative care consultation and discharge to hospice. CONCLUSIONS: Our results illustrate significant variation across hospitals in palliative care consultation use and discharge to hospice. No significant racial/ethnic disparities in the use of either palliative care or hospice at the end of life were found within hospitals.

Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team.

Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers. Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity. Design: A cross-sectional study using an online survey. Setting/Subjects: Home and residential hospice, inpatient palliative care service, and other inpatient and outpatient settings. Subjects were 865 hospice and palliative care providers, including physicians, social workers, nurses, and chaplains. Measurements: Inadequate, disrespectful, or abusive care to LGBT patients and discriminatory treatment of family and surrogates were measured. Results: Among respondents, 53.6% thought that lesbian, gay, or bisexual (LGB) patients were more likely than non-LGB patients to experience discrimination at their institution; 23.7% observed discriminatory care; 64.3% reported that transgender patients were more likely than nontransgender patients to experience discrimination; 21.3% observed discrimination to transgender patients; 15% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 14.3% observed the spouse/partner or surrogate being treated disrespectfully. Conclusions: These findings provide strong evidence that LGBT patients and their families are more likely to receive discriminatory care as compared with those who are not LGBT. Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.

Development of the PC-7, a Quantifiable Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life.

Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity. Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life. Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them. Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability). Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.