Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review.

BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness. DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020. RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy. CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.

PASTRY: A nursing-developed quality improvement initiative to combat moral distress.

BACKGROUND: High levels of moral distress in nursing professionals, of which oncology nurses are particularly prone, can negatively impact patient care, job satisfaction, and retention. AIM: "Positive Attitudes Striving to Rejuvenate You: PASTRY" was developed at a tertiary cancer center to reduce the burden of moral distress among oncology nurses. RESEARCH DESIGN: A Quality Improvement (QI) initiative was conducted using a pre- and post-intervention design, to launch PASTRY and measure its impact on moral distress of the nursing unit, using Hamric's Moral Distress Scale-Revised (MDS-R.) This program consisted of monthly 60-minute sessions allowing nurses to address morally distressing events and themes, such as clinicians giving "false hope" to patients or families. The PASTRY program sessions were led by certified clinicians utilizing strategies of discussion and mind-body practices. PARTICIPANTS: Clinical nurses working on an adult leukemia/lymphoma unit. ETHICAL CONSIDERATIONS: This was a QI initiative, participation was voluntary, MDS-R responses were collected anonymously, and the institution's Ethics Committee oversaw PASTRY's implementation. FINDINGS: While improvement in moral distress findings were not statistically significant, the qualitative and quantitative findings demonstrated consistent themes. The PASTRY program received strong support from nurses and institutional leaders, lowered the nursing unit's moral distress, led to enhanced camaraderie, and improved nurses' coping skills. DISCUSSION: Measurement of moral distress is innately challenging due to its complexity. This study reinforces oncology nurses have measurable moral distress. Interventions should be implemented for a safe and healing environment to explore morally distressing clinical experiences. Poor communication among multidisciplinary team members is associated with moral distress among nurses. Programs like PASTRY may empower nurses to build support networks for change within themselves and institutions. CONCLUSION: This QI initiative shows further research on moral distress reduction should be conducted to verify findings for statistical significance and so that institutional programs, like PASTRY, can be created.

Outcomes after long-term mechanical ventilation of cancer patients.

BACKGROUND: The probability of weaning and of long-term survival of chronically mechanically ventilated cancer patients is unknown, with incomplete information available to guide therapeutic decisions. We sought to determine the probability of weaning and overall survival of cancer patients requiring long-term mechanical ventilation in a specialized weaning unit. METHODS: A single-institution retrospective review of patients requiring mechanical ventilation outside of a critical care setting from 2008 to 2012 and from January 1 to December 31, 2018, was performed. Demographic and clinical data were recorded, including cancer specifics, comorbidities, treatments, and outcomes. Overall survival was determined using the Kaplan-Meier approach. Time to weaning was analyzed using the cumulative incidence function, with death considered a competing risk. Prognostic factors were evaluated for use in prospective evaluations of weaning protocols. RESULTS: Between 2008 and 2012, 122 patients required mechanical ventilation outside of a critical care setting with weaning as a goal of care. The cumulative incidence of weaning after discharge from the intensive care unit was 42% at 21 days, 49% at 30 days, 58% at 60 days, 61% at 90 days, and 61% at 120 days. The median survival was 0.16 years (95% CI, 0.12 to 0.33) for those not weaned and 1.05 years (95% CI, 0.60 to 1.34) for those weaned. Overall survival at 1 year and 2 years was 52 and 32% among those weaned and 16 and 9% among those not weaned. During 2018, 36 patients at our institution required mechanical ventilation outside of a critical care setting, with weaning as a goal of care. Overall, with a median follow-up of 140 days (range, 0-425 days; average, 141 days), 25% of patients requiring long-term mechanical ventilation (9 of 36) are alive. CONCLUSIONS: Cancer patients can be weaned from long-term mechanical ventilation, even after prolonged periods of support. Implementation of a resource-intensive weaning program did not improve rates of successful weaning. No clear time on mechanical ventilation could be identified beyond which weaning was unprecedented. Short-term overall survival for these patients is poor.

Disparities in Cancer Screening in Sexual and Gender Minority Populations: A Secondary Analysis of Behavioral Risk Factor Surveillance System Data.

OBJECTIVES: To describe cancer screening characteristics and better understand individual-, environmental-, and organizational-level barriers of sexual and gender minority (SGM) populations. . SAMPLE & SETTING: This study was conducted using a combined sample from the Behavioral Risk Factor Surveillance System (BRFSS) national dataset from 2014 and 2016. METHODS & VARIABLES: Chi-square tests for independence and logistic regression analysis tests were performed to determine whether relationships existed between SGM status and demographics. RESULTS: Black respondents or those who reported their race as other, were female, had some college or technical school or more, and had healthcare coverage were less likely to present for cancer screening. SGM respondents who were in good or better health; were unmarried; were aged 18-44 years or 45-55 years; or were Asian, Native American, or Hawaiian, or reported their race as other, had higher odds of screening for cancer. IMPLICATIONS FOR NURSING: Disparities in cancer screening among SGM populations are not well documented. These findings will inform structured education and preventative interventions to improve screening participation among SGM populations.

Perioperative Oncology Health Care Providers and Transgender Health: A Single-Institution Survey to Gauge Attitudes, Knowledge, Behaviors, and Education.

Purpose: Patients identifying as transgender report that a lack of access to providers with trans-specific medical knowledge represents one of the largest barriers to equitable health care access. Through an institutional survey, we assessed and analyzed the attitudes, knowledge, behaviors, and education of perioperative clinical staff when caring for transgender patients with cancer. Methods: A web-based survey was distributed to 1100 perioperative clinical staff at the National Cancer Institute (NCI)-Designated Comprehensive Cancer Center in New York City between January 14, 2020, and February 28, 2020, and received 276 responses. The survey instrument consisted of 42 nondemographic questions about attitudes, knowledge, behaviors, and education regarding transgender health care and 14 demographic questions. Questions were presented as a mix of Yes/No, free text response, and a 5-point Likert scale. Results: Certain demographic groups (younger, lesbian, gay, or bisexual [LGB], fewer years employment at the institution) held more favorable attitudes toward the transgender population and were more knowledgeable regarding their health needs. Respondents underreported the rates of mental illness and risk factors for cancer like HIV and substance use among the transgender population. A greater proportion of respondents identifying as LGB endorsed witnessing an interaction wherein a colleague exhibited attitudes/beliefs about the transgender population that were barriers to care. Only 23.2% of respondents were ever trained on the health needs of transgender patients. Conclusion: There is a need for institutions to assess the cultural competency of perioperative clinical staff toward transgender health, especially within certain demographics. This survey may inform quality education initiatives to eliminate biases and knowledge gaps.

Barriers to palliative care in sexual and gender minority patients with cancer: A scoping review of the literature.

The Institute of Medicine reports lesbian, gay, bisexual and transgender (LGBT) individuals having the highest rates of tobacco, alcohol and drug use leading to elevated cancer risks. Due to fear of discrimination and lack of healthcare practitioner education, LGBT patients may be more likely to present with advanced stages of cancer resulting in suboptimal palliative care. The purpose of this scoping review is to explore what is known from the existing literature about the barriers to providing culturally competent cancer-related palliative care to LGBT patients. This review will use the five-stage framework for conducting a scoping review developed by Arksey and O'Malley. The PubMed, Scopus, PsychINFO and Cochrane electronic databases were searched resulting in 1,442 citations. Eligibility criteria consisted of all peer-reviewed journal articles in the English language between 2007 and 2020 resulting in 10 manuscripts. Barriers to palliative cancer care for the LGBT include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgment, homophobia and mistrust of healthcare providers. Limited healthcare-specific knowledge by both providers and patients, poor preparation of legal aspects of advanced care planning and end-of-life care were underprovided to LGBT persons. As a result of these barriers, palliative care is likely to be provided for LGBT patients with cancer in a deficient manner, perpetuating marginalisation and healthcare inequities. Minimal research investigates these barriers and healthcare curriculums do not provide practitioners skills for administering culturally sensitive palliative care to LGBT patients.

Sexual and Gender Minority Communication Skills (SGM Comskil) Training for Oncology Clinicians: Development, Implementation, and Preliminary Efficacy.

Enhancing communicative competence of healthcare providers (HCPs) is a critical initiative for improving the healthcare experience of sexual and gender minority (SGM) cancer patients. This study presents the development, implementation, and preliminary efficacy of a new training curriculum for improving oncology HCPs' skills in providing a safe and welcoming environment for SGM cancer patients (SGM Comskil training). Thirty-three (N = 33) oncology HCPs including nurses, nurse leaders, and nurse practitioners participated in a 4.25-hour SGM Comskil Training between July and August 2019. Overall, participants reported highly favorable evaluations of the training, with more than 80% of the participants reacting positively to 12 of the 15 evaluation items assessing engagement and reflectiveness for experiential role-plays with lesbian, gay, bisexual (LGB) and transgender standardized patients (SPs), respectively. Participants also demonstrated significant improvements in SGM healthcare knowledge, self-efficacy, beliefs toward LGB and transgender persons, and SGM-sensitive language use skills following the training. Encouraged by the feasibility of conducting this experiential training with busy cancer care HCPs and the initial favorable participant evaluation of the SGM Comskil training, results clearly indicate that this training can be rolled out into clinical settings to ensure its translational potential. The next steps should assess observable changes in communication skills and SGM-sensitive language skills with SGM patients and improvements in SGM patients' healthcare experience.

Barriers and Facilitators to Cancer Screening Among LGBTQ Individuals With Cancer.

PROBLEM IDENTIFICATION: Cancer screening may reduce mortality and frequency of the disease. Lesbian, gay, bisexual, transgender, or queer (LGBTQ) individuals are less likely than non-LGBTQ individuals to present for cancer screening. LITERATURE SEARCH: A literature search was performed using CINAHL®, PsycINFO®, and PubMed®. Articles were included if they were published in English from 2008 to 2018 and addressed barriers or facilitators to cancer screening in LGBTQ populations. DATA EVALUATION: Data were organized by thematic matrix and classified according to the multilevel influences on the cancer care continuum framework. SYNTHESIS: This integrative review found that the lack of cancer screening data and knowledge about screening guidelines by LGBTQ populations and providers were major barriers to cancer screening adherence. Provider-created welcoming environments and caregiver inclusion were facilitators. IMPLICATIONS FOR PRACTICE: Determinants of health-seeking behavior included patients' and providers' lack of cancer screening knowledge, as well as perceived discrimination. Nurses are in a unique position to provide cancer screening information and culturally sensitive care for LGBTQ populations with adequate education.