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.

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.

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.

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.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

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.

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China.

Purpose: In China, decisions regarding the treatment of seriously ill patients are usually made by family caregivers. This study aimed to explore the association between the primary decision-makers and the intensity of care given to patients with advanced cancer in China. Methods: We conducted a survey of family members and other caregivers representing 828 cancer patients who died between July 2013 and July 2016. The survey asked: "After the physician conveyed that the disease is incurable, what treatment did the patient and caregiver prefer?" and "Who was the primary decision-maker?" We compared the treatment intensity with locus of decision-making using multivariable logistic regression, adjusting for socio-demographic and clinical covariates informed. Results: Of the 792 patients in our sample, the majority were male (67·2%), 60 years or older (64·0%), married (82·2%), lived with family (98·2%), had medical insurance (94·8%), earned below-average income (53·5%), lived rurally (61·5%), had a gastrointestinal cancer diagnosis (50·8%), experienced moderate or severe pain (86·3%), never received palliative care (80·4%) and had caregivers as primary decision-makers (70·6%). We found that patients were more likely to receive intensive disease-modifying treatments when the primary decision-maker were their children (adjusted odds ratio [AOR] = 1·86, 95% CI:1·26-2·74), spouse (AOR = 2·04, 95% CI:1·26-3·30), or other caregivers (AOR = 3·46, 95% CI:1·24-9·69). Conclusions: When patients with advanced cancer in China did not make their own medical decisions, they were more likely to receive intensive disease-modifying treatments at the end-of-life. Actions should be taken to better understand and ensure that caregivers' decisions reflect the values and presence of patients.

Caring for People We Know: An Unrecognized Risk for Burnout?

Background: As the field of palliative care continues to grow, many clinicians will care for patients with whom they have personal connections. Breaching the boundary between a clinician's personal and professional life is potentially an unrecognized risk for burnout. Objective: We explored the challenges of caring for patients personally known to clinicians and the types of support needed, with a view to developing preliminary practice guidelines. Design: Focus groups. Setting/Subjects: Thirteen psychosocial oncology and palliative care clinicians who care for adult patients participated in one of two focus groups. Six participants were physicians, four were nurse practitioner/registered nurse/physician assistant (NP/RN/PAs), and three were psychosocial clinicians. Measurement: Using NVivo 12, we analyzed focus group transcripts from clinicians about their experiences caring for patients they know personally, the impact of such experiences, and the type of support and guidelines that could benefit clinicians in these unique situations. Results: Navigating boundaries and managing the psychological impact on the clinician, including fear of negative evaluation, increased anxiety and emotional exhaustion were the most challenging aspects of providing such care. Suggested guidelines include an early team meeting, a buddy system, a conversation guide to address the dual relationship, and embedded psychological support and mentorship. Conclusions: Feedback from clinicians identified preliminary guidelines that incorporate tools palliative care teams can use to improve support for clinicians caring for patients with whom they have a personal connection. These tools address the psychosocial aspects of care and have the potential to help clinicians feel a greater sense of control in these often, challenging and emotionally taxing situations.

Creating KidneyPal: A Specialty-Aligned Palliative Care Service for People with Kidney Disease.

BACKGROUND: Patients with kidney disease have notable unmet palliative care needs and represent an underserved population for specialty palliative care teams. INTERVENTION: We designed a specialty-aligned interprofessional palliative care service called KidneyPal that is aimed at improving delivery of palliative care to patients with kidney disease through focus groups and iterative improvement cycles. MEASURES: We iteratively measured the development of KidneyPal through clinical process metrics: percent of the inpatient nephrology census followed by KidneyPal, patient demographics, consult origin, clinician feedback, and self-reported team interventions. OUTCOMES: KidneyPal saw 314 unique patients from January 2019 to January 2021. The majority of consultations came from nephrology services though the source of consultation changed over time. We consulted on an average of 13.5% of the entire inpatient nephrology patient hospital census with highest involvement with patients on the inpatient nephrology hemodialysis service (mean of 29.9%). KidneyPal was rated highly by surveyed nephrology clinicians and provided high rates of psychosocial support and goals of care interventions. LESSONS LEARNED: The creation of KidneyPal led to us to serve a new cohort of patients with specialty palliative care. We grew over time to serve the full range of patients with kidney disease as defined by our nephrology service lines. We succeeded in doing so by embedding in nephrology and building relationships with those caring for people with kidney disease while tailoring our service and interventions over time.

Specialty-Aligned Palliative Care: Responding to the Needs of a Tertiary Care Health System.

BACKGROUND: Expanding specialty palliative care within complex health systems involves consideration of patients' unmet needs, clinicians' perceptions of palliative care, and the availability of palliative care resources. Prior to this quality improvement (QI) project, palliative care services in our health system primarily served oncology patients. INTERVENTION: We undertook a prospective strategic planning process that included executive sponsorship and engagement of institutional leaders and clinicians to help define which palliative care services were most needed by the health system. MEASURES: We interviewed and surveyed a broad range of clinicians including physicians, nurse practitioners, and social workers. OUTCOMES: The two most prominent themes that emerged from the stakeholder engagement process were clinicians' wish for specialty-aligned interprofessional palliative care teams and for expansion of nononcology palliative care access. CONCLUSION: Careful needs assessment and stakeholder engagement can result in goal-directed and data-driven expansion of palliative care services within tertiary health care systems.

Differences in End-of-Life Care between COVID-19 Inpatient Decedents with English Proficiency and Limited English Proficiency.

Background: Patients with limited English proficiency (LEP) experience lower quality end-of-life (EOL) care. This inequity may have been exacerbated during the COVID-19 pandemic. Objective: Compare health care utilization, EOL, and palliative care outcomes between COVID-19 decedents with and without LEP during the pandemic's first wave in Massachusetts. Methods: Retrospective cohort study of adult inpatients who died from COVID-19 between February 18, 2020 and May 18, 2020 at two academic and four community hospitals within a greater Boston health care system. We performed multivariable regression adjusting for patient sociodemographic variables and hospital characteristics. Primary outcome was place of death (intensive care unit [ICU] vs. non-ICU). Secondary outcomes included hospital and ICU length of stay and time to initial palliative care consultation. Results: Among 337 patients, 89 (26.4%) had LEP and 248 (73.6%) were English proficient. Patients with LEP were less often white (24 [27.0%] vs. 193 [77.8%]; p < 0.001); were more often Hispanic or Latinx (40 [45.0%] vs. 13 [5.2%]; p < 0.001); and less often had a medical order for life-sustaining treatment (MOLST) on admission (15 [16.9%] vs. 120 [48.4%]; p < 0.001) versus patients with English proficiency. In the multivariable analyses, LEP was not independently associated with ICU death, ICU length of stay, or time to palliative care consultation, but was independently associated with increased hospital length of stay (mean difference 4.12 days; 95% CI, 1.72-6.53; p < 0.001). Conclusions: Inpatient COVID-19 decedents with LEP were not at increased risk of an ICU death, but were associated with an increased hospital length of stay versus inpatient COVID-19 decedents with English proficiency.

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.

Barriers and Facilitators to Advance Care Planning among Chinese Patients with Advanced Cancer and Their Caregivers.

Background: Chinese American adults experience health disparities at the end of life. Culturally tailored advance care planning (ACP) may promote goal-concordant care across the continuum of serious illness. However, seriously ill Chinese Americans' preferences for ACP remain unknown. Objective: To explore barriers and facilitators to ACP among Chinese patients with advanced cancer and their caregivers. Design: Informed by socioecological theory, we conducted an exploratory qualitative study using semistructured interviews that were thematically analyzed. Setting/Participants: We recruited participants at one U.S. comprehensive cancer center. Of 27 eligible patients approached, we recruited 20 patients (74.1%) and 8 accompanying caregivers. Overall, participants were middle aged (55.6 ± 13.5 years), 60.7% female, 85.7% partnered/married, 89.3% college educated, and had low acculturation (mean Suinn-Lew Asian Self-Identify Acculturation = 2.0 ± 1.6/5.0). More patients were privately insured (35%) than self-pay (30%), Medicare (25%), and Medicaid (10%). Caregivers were split between "spouse" and "child." Results: Findings highlight participants' trust in their clinicians and the study institution as primary supports for clinicians to lead ACP. However, participants' preconceptions of clinicians' professional responsibilities and participants' belief in an uncertain future may hinder an open discussion of goals and values for future medical care. A key moderating factor in how participants view ACP may be their level of acculturation to local care, behavioral, and communication norms. Conclusions: Chinese patients may prefer a routinized clinician-led ACP approach that supports their actionable priorities in the present by leveraging patient-clinician trust, gauging acculturation level, and using indirect communication strategies. Future studies should investigate preferred communication strategies to support in-the-moment care planning.