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.

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.

E-Pain Reporter: A Digital Pain and Analgesic Diary for Home Hospice Care.

Informal hospice caregivers play a key role in managing patients' pain at home, but lack of adherence to doctor-prescribed analgesic regimens and medication errors are significant barriers to truly effective pain management. A digital pain diary may improve caregiver management of pain at home; however, most digital pain tools available today were developed without input from patients or caregivers. Accordingly, the purpose of this study was to develop a digital pain application (1) for hospice caregivers to record patient pain and analgesic use and (2) for nurses to monitor administration of analgesics by caregivers. Using advisory group methods, nurse case managers (n = 6), and informal caregivers (n = 3) helped us to convert a paper-based pain and analgesic diary into a digital format-the e-PAIN Reporter-and to refine the application. The e-PAIN Reporter provides information on patient pain assessment and pain management and reports to nurses in real time. Further testing is now needed to determine (1) the feasibility of using the e-PAIN Reporter and (2) its effectiveness in improving pain management for hospice patients.

Distress, delay of gratification and preference for palliative care in men with prostate cancer.

BACKGROUND: Patient-centered cancer care standards include routine psychosocial distress screening and referral for supportive care services. Although many cancer patients report psychosocial distress that could be alleviated by supportive services including palliative care, patients often decline such services for reasons that are poorly understood. Research on decision-making suggests that during periods of acute distress, individuals have more difficulty prioritizing long-term over immediate gains. Thus, distressed cancer patients may prioritize immediate gains (e.g., avoidance of palliative care discussions in the moment) over longer-term gains (e.g., improved quality of life in the future). METHOD: This study investigated the associations between psychosocial distress, difficulties with delay of gratification (tendency to prioritize short-term over longer-term gains), and preference for palliative care in a sample of 212 men with a history of prostate cancer (94% white men and 27% advanced stage, age M = 62, SD = 8). It was hypothesized that psychosocial distress would be associated with lower preferences for palliative care, and this association would be explained, in part, by difficulty delaying gratification. Self-report measures included the depression anxiety stress scales, delay of gratification inventory, and ratings on an item assessing preferences for palliative care. RESULTS: Consistent with the hypothesis, mediation models confirmed that the association of psychosocial distress with lower preference for palliative care was mediated by delay of gratification. CONCLUSIONS: Findings suggest that distressed prostate cancer patients may benefit from additional support managing the emotional aspects of medical decisions and weighing immediate versus delayed outcomes.

Posttraumatic stress symptoms in palliative care professionals seeking mindfulness training: Prevalence and vulnerability.

BACKGROUND: Vicarious exposure to trauma is ubiquitous in palliative medicine. Repeated exposure to trauma may contribute to compassion fatigue and posttraumatic stress disorder symptoms in medical and supportive care professionals such as physicians, nurses, and social workers. These symptoms may be intensified among medical and supportive care professionals who use avoidant or rigid coping strategies. AIM: This study aimed to provide an estimate of posttraumatic stress disorder symptoms in a sample of professionals who work in palliative care settings, and have already been enrolled in mindfulness-based communication training. DESIGN: Palliative care providers provided self-reported ratings of posttraumatic stress disorder symptoms, depression, and coping strategies using validated measures including the Acceptance and Action Questionnaire, Cognitive Fusion Questionnaire, and the Posttraumatic Stress Disorder Checklist-Civilian Version. SETTING/PARTICIPANTS: A total of 21 professionals working with palliative care patients completed assessments prior to beginning mindfulness-based communication training. RESULTS: Posttraumatic stress disorder symptoms were prevalent in this sample of professionals; 42% indicated positive screens for significant posttraumatic stress disorder symptoms, and 33% indicated probable posttraumatic stress disorder diagnosis. CONCLUSION: Posttraumatic stress disorder symptoms may be common among professionals working in palliative medicine. Professionals prone to avoidant coping and those with more rigid negative thought processes may be at higher risk for posttraumatic stress disorder symptoms.

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.

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.

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.

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.

Project Respect: experiences of seriously ill LGBTQ+ patients and partners with their health care providers.

Discrimination against lesbian, gay, bisexual, transgender, and queer (LGBTQ+) persons in health care creates barriers to serious illness care, including patients avoiding or delaying necessary care, providers disrespecting wishes of surrogates, and adverse outcomes for patients and families. A cross-sectional mixed-methods study using an online survey was used to determine the extent to which LGBTQ+ patients and spouses, partners, and widows experienced disrespectful or inadequate care due to sexual orientation or gender identity. A total of 290 LGBTQ+ patients and partners reported high levels of disrespectful and inadequate care, including 35.2% stating their provider was insensitive to them because of their identity; 30% reporting their provider was unaware of LGBTQ+ health needs; 23.1% feeling judged; 20.7% experiencing rudeness; 20.3% stating providers did not use their correct pronouns; and 19.7% reporting their treatment decisions were disregarded. Black and Hispanic patients were 2-4 times more likely than non-Hispanic White patients to report discrimination. This study demonstrated high levels of disrespectful and inadequate care towards patients and partners due to being LGBTQ+, which was especially problematic for Black and Hispanic patients and those living in politically conservative regions. Recommendations include federal and state civil rights laws to prohibit LGBTQ+ discrimination and institutional practices to address discrimination, including cultural sensitivity training for staff.

One-week and 3-month outcomes after an emergency department visit for undifferentiated musculoskeletal low back pain.

STUDY OBJECTIVE: Nearly 3 million patients present to US emergency departments (EDs) annually with undifferentiated musculoskeletal low back pain. Little is known about short- and longer-term outcomes in this group. We seek to describe the pain and functional outcomes 1 week and 3 months after discharge in a sample of ED patients presenting with undifferentiated musculoskeletal low back pain. METHODS: We used a prospective observational descriptive cohort design, enrolling ED patients with a chief complaint of low back pain classified as musculoskeletal in origin by the ED attending physician. We defined low back pain as pain originating in the posterior back between the tips of the scapulae and upper buttocks and excluded any patient with a traumatic back injury occurring within the previous month. We interviewed patients in the ED and then by telephone follow-up 1 week and 3 months after ED discharge, using a scripted closed-question data collection instrument. Our primary outcome was functional limitation attributable to low back pain assessed with a validated scale. Secondary outcomes included pain and analgesic use during the 24 hours before each follow-up telephone call. RESULTS: During a 9-month period beginning in July 2009, we approached 894 patients, of whom 556 were enrolled. We obtained follow-up on 97% of our sample at 1 week and 92% at 3 months. One week after ED discharge, 70% (95% confidence interval [CI] 66% to 74%) of patients reported back pain-related functional impairment, 59% (95% CI 55% to 63%) reported moderate or severe low back pain, and 69% (95% CI 65% to 73%) reported analgesic use within the previous 24 hours. Three months after ED discharge, 48% (95% CI 44% to 52%) of patients reported functional impairment, 42% (95% CI 38% to 46%) reported moderate or severe pain, and 46% (95% CI 44% to 50%) reported analgesic use within the previous 24 hours. CONCLUSION: There is substantial short- and longer-term morbidity and ongoing analgesic use among patients who present to an ED with undifferentiated musculoskeletal low back pain.

Brain Death Determination and Communication: An Innovative Approach Using Simulation and Standardized Patients.

CONTEXT: Palliative medicine clinicians in hospital settings are often involved in the care of patients dying in critical care settings, with a subset from brain death. Brain death is a complex concept, not only for families, but also for clinicians. There is wide variability in adhering to formalized guidelines for brain death determination. In addition, communication techniques regarding brain death determination are distinct from those used in shared decision-making. There is a need to obtain knowledge and practical skills in brain death determination, including examination and communication. Simulation can provide a low-stakes setting to practice the process of brain death determination and communication. OBJECTIVES: Describe a novel approach using high-fidelity simulation to teach hospice and palliative medicine fellows the practical and nuanced aspects of brain death determination and communication. Discuss the impact on fellows' confidence and knowledge for this learning activity. INNOVATION/METHODS: This three-hour workshop includes a didactic session followed by a single case conducted in three parts using standardized patient encounters and high-fidelity simulation with manikin. It is delivered annually, as part of the monthly core didactic conference for all hospice and palliative medicine fellows in the four fellowship programs in our region. OUTCOMES/RESULTS: Pre- and post-intervention surveys were performed assessing perceived confidence and content-related knowledge, which showed significant improvement in both areas. COMMENTS/CONCLUSION: Simulation is a practical and constructive method for teaching the challenging concepts and unique communication skills involved in brain death determination.

Emotion Dysregulation and Workplace Satisfaction in Direct Care Worker Burnout and Abuse Risk.

BACKGROUND/OBJECTIVES: Direct care workers frequently encounter difficult interactions with the patients they serve and experience frustration and burnout. The current study tested a hypothesized model in which predictors of caregiver abuse risk (emotional dysregulation, difficulty managing patient behavior, and workplace satisfaction) were mediated by symptoms of burnout. DESIGN: The study used an online cross-sectional survey design. SETTING AND PARTICIPANTS: The study was implemented online via Qualtrics. Participants were 206 direct care workers (eg, certified nursing assistants, patient care technicians, home health aides, and medical assistants). MEASUREMENTS: All respondents completed the Caregiver Abuse Screen (CASE), Difficulty with Emotional Regulation Scale (DERS-SF), and the Abbreviated Maslach Burnout Inventory. Demographic data and employment history were also collected. Correlational methods, including path analysis, were used to assess associations between study variables. RESULTS: More than half of this heterogenous sample endorsed significant risk for engaging in patient abuse. Path analysis suggested emotional dysregulation and low workplace satisfaction were associated with greater risk of patient abuse, and these associations were partially and simultaneously mediated by burnout facets of depersonalization and emotional exhaustion. CONCLUSIONS AND IMPLICATIONS: This study provided preliminary support for a model of caregiver abuse in which underlying difficulties regulating emotions convey risk for caregiver abuse via burnout facets including emotional exhaustion and depersonalization. Enhancing basic emotion regulation skills and reducing burnout in direct care staff may reduce the risk of abuse for older adults. Thus, providing training necessary to help direct care workers manage their own emotions in order to better recognize, understand, and respond effectively to the needs of older adults may reduce staff burnout and, consequently, lower the risk of abuse for older adults.

Experiential Avoidance and Post-traumatic Stress Symptoms Among Child Abuse Counselors and Service Workers: A Brief Report.

Professionals who counsel and serve survivors of childhood abuse may be at risk of experiencing symptoms of post-traumatic stress disorder (PTSD), which can be exacerbated by cognitive and emotional processes. It is hypothesized that (1) a significant proportion of professionals who primarily serve child abuse survivors experience elevated levels of PTSD symptoms and (2) elevated PTSD symptoms are associated with psychological inflexibility processes, specifically increased experiential avoidance, cognitive fusion, and emotion regulation difficulties. Child abuse counselors and service workers (N = 31) in a major metropolitan area were recruited for a small pilot study. Participants completed self-report measures of PTSD symptoms and levels of psychological flexibility processes. A significant proportion of counselors endorsed clinically significant PTSD symptoms (n = 13, 41.9%). PTSD symptoms were significantly associated with experiential avoidance (r = .54, p < .01) and emotion regulation difficulties (r = .51, p < .01). These associations remained significant after controlling for the personality trait of emotional stability/neuroticism. These findings suggest that PTSD symptoms may be common among child abuse counselors and service workers, and these symptoms tend to be of greater intensity when responded to in avoidant and inflexible ways.

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.

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.

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.

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.