The power of hope.

My patient was in his late 20s and dying of an advanced sarcoma. He came to our institution seeking a miracle-a cure for his incurable cancer. Despite second and third opinions, he never relinquished his hope that science would cure him. In this story, I explore how hope allowed my patient, and others like him, to reclaim their narratives and maintain their personhood in the face of serious illness.

Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

The Evolving Roles and Expectations of Inpatient Palliative Care Through COVID-19: a Systematic Review and Meta-synthesis.

BACKGROUND: Palliative care performed a central role in responding to the systemic suffering incurred by the COVID-19 pandemic. Yet, few studies have elucidated the inpatient palliative care specialists' experiences and perceptions. OBJECTIVE: Systematically review and synthesize the evolving roles and expectations of inpatient palliative care specialists in response to COVID-19. DESIGN: A systematic review and meta-synthesis informed by Thomas and Harden's framework and Pozzar et al.'s approach was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. DATA SOURCES: MEDLINE, EMBASE, CINAHL, and PubMed were systematically searched for articles published between December 2019 and March 2023. We included all peer-reviewed qualitative and mixed-method literature studying the roles and expectations of inpatient palliative care specialists. A mixed-method appraisal tool was used for quality assessment. RESULTS: Of 3869 unique articles, 52 were included. Studies represented North American (n = 23), European (n = 16), South American (n = 4), Oceanic (n = 2), Asian (n = 2), West African (n = 1), Middle Eastern (n = 1), and inter-continental settings (n = 3). Most were reported in English (n = 50), conducted in 2020 (n = 28), and focused on the perspectives of inpatient palliative care clinicians (n = 28). Three descriptive themes captured the roles and expectations of inpatient palliative care specialists: shifting foundations, reorienting to relationships, and evolving identity. Two analytical themes were synthesized: palliative care propagates compassion through a healing presence, and palliative care enhances the systemic response to suffering through nimble leadership. CONCLUSION: Inpatient palliative care specialists responded to the COVID-19 pandemic by establishing their healing presence and leading with their adaptability. To develop institutionally tailored and collaborative responses to future pandemics, future studies are needed to understand how inpatient palliative care clinicians are recognized and valued within their institutions.

The Palliative Story Exchange: An innovative storytelling intervention to build community, foster shared meaning, and improve sustainability.

OBJECTIVE: Palliative care (PC) faces a workforce crisis. Seriously ill patients surpass the supply of PC cliniciansin their work clinicians face repeated loss and extreme suffering which can have deleterious consequences, such as burnout and attrition. We urgently need interventions that foster thriving communities in this emotionally complex environment. Storytelling represents a promising path forward. In response to widespread loneliness and moral distress among PC clinicians before, during, and after the early months of the COVID-19 pandemic, we created the Palliative Story Exchange (PSE), a storytelling intervention to build community, decrease isolation, and help clinicians rediscover the shared meaning in their work. This paper discusses this novel intervention and initial program evaluation data demonstrating the PSE's impact thus far. METHODS: Participants voluntarily complete a post-then-pre wellness survey reflecting on their experience. RESULTS: Thus far, over 1,000 participants have attended a PSE. In the fall of 2022, we began distributing a post-then-pre-evaluation survey. To date, 130 interprofessional participants from practice locations across 10 different countries completed the survey. Responses demonstrate an increase in the connection that participants felt toward their work and the larger palliative care community after attending a PSE. Further, more than half of all free-text responses include terms such as, "meaningful," "healing," "powerful," and "universal," to describe their participation. SIGNIFICANCE OF RESULTS: Training programs and healthcare organizations use the humanities to support clinician wellness and improve patient care. The PSE builds upon this work through a novel combination of storytelling, community co-creation using reflection, and shared meaning making. Initial survey data demonstrates that after attending a PSE, participants feel increased meaning in their work, in the significance of their own stories, and connection with the PC community. Moving forward, we seek to expand our community of practice, host a facilitator leadership course, and rigorously study the PSE's impact on clinician wellness outcomes.

Adaptation of a Multimedia Chemotherapy Educational Intervention for Latinos: Letting Patient Narratives Speak for Themselves.

This study aims to adapt a video-based, multimedia chemotherapy educational intervention to meet the needs of US Latinos with advanced gastrointestinal malignancies. A five-step hybrid adaptation process involved (1) creating a multidisciplinary team with diverse Latino subject experts, (2) appraising the parent intervention, (3) identifying key cultural considerations from a systematic literature review and semi-structured Latino patient/caregiver interviews, (4) revising the intervention, highlighting culturally relevant themes through video interviews with Latino cancer patients, and (5) target population review with responsive revisions. We developed a suite of videos, booklets, and websites available in English and Spanish, which convey the risks and benefits of common chemotherapy regimens. After revising the English materials, we translated them into Spanish using a multi-step process. The intervention centers upon conversations with 12 Latino patients about their treatment experiences; video clips highlight culturally relevant themes (personalismo, familismo, faith, communication gaps, prognostic information preferences) identified during the third adaptation step. The adapted intervention materials included a new section on coping, and one titled "how to feel the best you can feel," which reviews principles of side effect management, self-advocacy, proactive communication, and palliative care. Ten Latinos with advanced malignancies reviewed the intervention and found it to be easily understandable, relatable, and helpful. A five-step hybrid model was successful in adapting a chemotherapy educational intervention for Latinos. Incorporation of video interviews with Latino patients enabled the authentic representation of salient cultural themes. Use of authentic patient narratives can be useful for cross-cultural intervention adaptations.

A Retrospective Observational Study Exploring 30- and 90-Day Outcomes for Patients With COVID-19 After Percutaneous Tracheostomy and Gastrostomy Placement.

OBJECTIVES: To determine the 30- and 90-day outcomes of COVID-19 patients receiving tracheostomy and percutaneous endoscopic gastrostomy (PEG). DESIGN: Retrospective observational study. SETTING: Multisite, inpatient. PATIENTS: Hospitalized COVID-19 patients who received tracheostomy and PEG at four Boston hospitals. INTERVENTIONS: Tracheostomy and PEG placement. MEASUREMENTS AND MAIN RESULTS: The primary outcome was mortality at 30 and 90 days post-procedure. Secondary outcomes included continued device presence, place of residence, complications, and rehospitalizations. Eighty-one COVID-19 patients with tracheostomy and PEG placement were included. At 90 days post-device placement, the mortality rate was 9.9%, 2.7% still had the tracheostomy, 32.9% still had the PEG, and 58.9% were at home. CONCLUSIONS: More than nine-in-10 patients in our population of COVID-19 patients who underwent tracheostomy and PEG were alive 90 days later and most were living at home. This study provides new information regarding the outcomes of this patient population that may serve as a step in guiding clinicians, patients, and families when making decisions regarding these devices.

Asian American Medicare Beneficiaries Disproportionately Receive Invasive Mechanical Ventilation When Hospitalized at the End-of-Life.

BACKGROUND: Asian Americans are the fastest-growing ethnic minority in the USA, but we know little about the end-of-life care for this population. OBJECTIVE: Compare invasive mechanical ventilation (IMV) use between older Asian and White decedents with hospitalization in the last 30 days of life. DESIGN: Population-based retrospective cohort study. PARTICIPANTS: A 20% random sample of 2000-2017 Medicare fee-for-service decedents who were 66 years or older and had a hospitalization in the last 30 days of life. EXPOSURE: White and Asian ethnicity as collected by the Social Security Administration. MAIN MEASURES: We identified IMV using validated procedural codes. We compared IMV use between Asian and White fee-for-service decedents using random-effects logistic regression analysis, adjusting for sociodemographics, admitting diagnosis, comorbidities, and secular trends. KEY RESULTS: From 2000 to 2017, we identified 2.1 million White (54.5% female, 82.4±8.1 mean age) and 28,328 Asian (50.8% female, 82.6±8.1 mean age) Medicare fee-for-service decedents hospitalized in the last 30 days. Compared to White decedents, Asian fee-for-service decedents have an increased adjusted odds ratio (AOR) of 1.42 (95%CI: 1.38-1.47) for IMV. In sub-analyses, Asians' AOR for IMV differed by admitting diagnoses (cancer AOR=1.32, 95%CI: 1.15-1.51; congestive heart failure AOR=1.75, 95%CI: 1.47-2.08; dementia AOR=1.93, 95%CI: 1.70-2.20; and chronic obstructive pulmonary disease AOR=2.25, 95%CI: 1.76-2.89). CONCLUSIONS: Compared to White decedents, Asian Medicare decedents are more likely to receive IMV when hospitalized at the end-of-life, especially among patients with non-cancer admitting diagnoses. Future research to better understand the reasons for these differences and perceived quality of end-of-life care among Asian Americans is urgently needed.

The Psychoneuroimmunological Model of Moral Distress and Health in Healthcare Workers: Toward Individual and System-Level Solutions.

Healthcare is presently experiencing a global workforce crisis, marked by the inability of hospitals to retain qualified healthcare workers. Indeed, poor working conditions and staff shortages have contributed to structural collapse and placed a heavy toll on healthcare workers' (HCWs) well-being, with many suffering from stress, exhaustion, demoralization, and burnout. An additional factor driving qualified HCWs away is the repeated experience of moral distress, or the inability to act according to internally held moral values and perceived ethical obligations due to internal and external constraints. Despite general awareness of this crisis, we currently lack an organized understanding of how stress leads to poor health, wellbeing, and performance in healthcare workers. To address this critical issue, we first review the literature on moral distress, stress, and health in HCWs. Second, we summarize the biobehavioral pathways linking occupational and interpersonal stressors to health in this population, focusing on neuroendocrine, immune, genetic, and epigenetic processes. Third, we propose a novel Psychoneuroimmunological Model of Moral Distress and Health in HCWs based on this literature. Finally, we discuss evidence-based individual- and system-level interventions for preventing stress and promoting resilience at work. Throughout this review, we underscore that stress levels in HCWs are a major public health concern, and that a combination of system-level and individual-level interventions are necessary to address preventable health care harm and foster resilience in this population, including new health policies, mental health initiatives, and additional translational research.

Trainee Perceptions of a Competency-Based Mid-Career Fellowship in Hospice And Palliative Medicine.

Context: The time-variable, competency-based mid-career fellowship in Hospice and Palliative Medicine (HPM) is a multicenter pilot program for physicians who want to train in HPM part-time. Objectives: This study describes the experience of the early cohort of mid-career fellows. Methods: Fellows at the seven sites were surveyed about their perceptions of the program and their confidence in subspecialty skills. Results: Surveys were sent to 13 fellows and completed by 8. All reported positive experiences with curricula, direct observation, feedback, and cross-site case reviews. Most responses were positive regarding individualized learning plans and case-stimulated reviews. Respondents reported high confidence in 9 of the 13 specialty-specific skills, including communication, caring for dying patients, and pain management. They reported less confidence with psychological and non-pain symptoms, spirituality, and prognostication. Fewer than half indicated that the process for graduation was clear. Conclusion: Physicians in the competency-based HPM fellowship report a positive experience and high confidence in subspecialty skills.

Supporting Underserved Communities for Health Care: US Immigrants' Experiences with Social Support.

Background: Social support is associated with improved clinical outcomes but is understudied among US immigrants. We examined two types of social support, perceived health provider support and community support, and characterized perceptions of social support among US immigrants compared with nonimmigrants. Methods: We conducted cross-sectional data analysis on self-reported data from Health Information National Trends Survey 5, Cycle 2. Population-level estimates were obtained using jack-knife replicate weights. Results: Immigrant status was not associated with perceived health care provider support or community support. However, compared with nonimmigrants, US immigrants were more likely to report rarely (adjusted odds ratio [aOR]=3.07) or never (aOR=3.18) having access to emotional support. Conclusions: Further research that incorporates nuanced factors (eg, time since arrival) that may influence social support in diverse US immigrant groups is needed to determine the impact of social support on health outcomes in an underserved and often overlooked population.

A Hospice Transitions Program for Patients in the Emergency Department.

Importance: Patients often visit the emergency department (ED) near the end of life. Their common disposition is inpatient hospital admission, which can result in a delayed transition to hospice care and, ultimately, an inpatient hospital death that may be misaligned with their goals of care. Objective: To assess the association of hospice use with a novel multidisciplinary hospice program to rapidly identify and enroll eligible patients presenting to the ED near end of life. Design, Setting, and Participants: This pre-post quality improvement study of a novel, multifaceted care transitions program involving a formalized pathway with email alerts, clinician training, hospice vendor expansion, metric creation, and data tracking was conducted at a large, urban tertiary care academic medical center affiliated with a comprehensive cancer center among adult patients presenting to the ED near the end of life. The control period before program launch was from September 1, 2018, to January 31, 2020, and the intervention period after program launch was from August 1, 2021, to December 31, 2022. Main Outcome and Measures: The primary outcome was a transition to hospice without hospital admission and/or hospice admission within 96 hours of the ED visit. Secondary outcomes included length of stay and in-hospital mortality. Results: This study included 270 patients (median age, 74.0 years [IQR, 62.0-85.0 years]; 133 of 270 women [49.3%]) in the control period, and 388 patients (median age, 73.0 years [IQR, 60.0-84.0 years]; 208 of 388 women [53.6%]) in the intervention period, identified as eligible for hospice transition within 96 hours of ED arrival. In the control period, 61 patients (22.6%) achieved the primary outcome compared with 210 patients (54.1%) in the intervention period (P < .001). The intervention was associated with the primary outcome after adjustment for age, race and ethnicity, primary payer, Charlson Comorbidity Index, and presence of a Medical Order for Life-Sustaining Treatment (MOLST) (adjusted odds ratio, 5.02; 95% CI, 3.17-7.94). In addition, the presence of a MOLST was independently associated with hospice transition across all groups (adjusted odds ratio, 1.88; 95% CI, 1.18-2.99). There was no significant difference between the control and intervention periods in inpatient length of stay (median, 2.0 days [IQR, 1.1-3.0 days] vs 1.9 days [IQR, 1.1-3.0 days]; P = .84), but in-hospital mortality was lower in the intervention period (48.5% [188 of 388] vs 64.4% [174 of 270]; P < .001). Conclusions and Relevance: In this quality improvement study, a multidisciplinary program to facilitate ED patient transitions was associated with hospice use. Further investigation is needed to examine the generalizability and sustainability of the program.

Adding Pals to KidneyPal: Creating a Virtual Patient and Family Advisory Council for Kidney Palliative Care.

Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process. We eliminated several potential barriers to participation for our patients and their family members, a population with higher rates of advanced age, nonwhite ethnicity, and limited English proficiency than the local general population. We removed application requirements including lengthy online training modules, detailed employment history, a personal essay, and a criminal background check. The KidneyPal PFAC may act as a model for improving equity and inclusion in virtual patient advisory councils.