Understanding Multilevel Factors Related to Retention Among the Direct Care Workforce: Incorporating Lessons Learned in Considering Innovative Interventions.

GOAL: This article explores how broad, contextual factors may be influential in the retention of direct care workers (DCWs; i.e., entry-level caregivers) who provide vital support to patients in healthcare settings. We reflect on lessons learned from an evaluation of a multisite intervention to improve retention among DCWs employed primarily in hospital settings at three health systems. METHODS: We evaluated a multitiered program for entry-level caregivers that included a risk assessment, a 4-day curriculum, and follow-up sessions, as well as workforce coaching at the three health systems. As part of our evaluation, we collected data on roughly 3,000 DCWs from the three health systems; the information included hiring date, any transfer date, and any termination date for each new DCW, as well as demographic information, position characteristics, and termination status and reasons for any termination. In addition, we collected information about organizational characteristics, including staffing and number of employees. We also conducted interviews with 56 DCWs and 21 staff members who implemented a retention program across each of the three health systems and remotely conducted virtual observations of the curriculum sessions at each system. PRINCIPAL FINDINGS: Although the program we evaluated focused on individual-level factors that may affect retention, our findings revealed other broader, contextual challenges faced by DCWs that they said would have an impact on their willingness to stay in their positions. These challenges included (1) job-related factors including limited compensation, aspects of the job itself, and the inability to advance in one's position; (2) health system challenges including the mission, policies, staffing, and organizational culture; and (3) external factors including federal policies and the ongoing COVID-19 pandemic. PRACTICAL APPLICATIONS: As the direct care workforce continues to grow, interventions to improve retention should consider the interconnectedness of these multilevel factors rather than solely individual-level factors. In addition, further research is needed to rigorously evaluate any potential intervention and consider how such an approach can target DCWs in hospital-based settings who are most affected by the multilevel challenges identified. Finally, any intervention to improve retention must be also aligned to ensure equity, especially in this population of low-wage DCWs, many of whom are marginalized women and individuals of color.

Experiences of moral distress in a COVID-19 intensive care unit: A qualitative study of nurses and respiratory therapists in the United States.

The COVID-19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID-19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to consider needs for additional support. Twenty semi-structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges.

Clinical Ethics Consultation During the First COVID-19 Pandemic Surge at an Academic Medical Center: A Mixed Methods Analysis.

While a significant literature has appeared discussing theoretical ethical concerns regarding COVID-19, particularly regarding resource prioritization, as well as a number of personal reflections on providing patient care during the early stages of the pandemic, systematic analysis of the actual ethical issues involving patient care during this time is limited. This single-center retrospective cohort mixed methods study of ethics consultations during the first surge of the COVID 19 pandemic in Massachusetts between March 15, 2020 through June 15, 2020 aim to fill this gap. Results indicate that there was no significant difference in the median number of monthly consultation cases during the first COVID-19 surge compared to the same period the year prior and that the characteristics of the ethics consults during the COVID-19 surge and same period the year prior were also similar. Through inductive analysis, we identified four themes related to ethics consults during the first COVID-19 surge including (1) prognostic difficulty for COVID-19 positive patients, (2) challenges related to visitor restrictions, (3) end of life scenarios, and (4) family members who were also positive for COVID-19. Cases were complex and often aligned with multiple themes. These patient case-related sources of ethical issues were managed against the backdrop of intense systemic ethical issues and a near lockdown of daily life. Healthcare ethics consultants can learn from this experience to enhance training to be ready for future disasters.

Experience with a Revised Hospital Policy on Not Offering Cardiopulmonary Resuscitation.

Critical care society guidelines recommend that ethics committees mediate intractable conflict over potentially inappropriate treatment, including Do Not Resuscitate (DNR) status. There are, however, limited data on cases and circumstances in which ethics consultants recommend not offering cardiopulmonary resuscitation (CPR) despite patient or surrogate requests and whether physicians follow these recommendations. This was a retrospective cohort of all adult patients at a large academic medical center for whom an ethics consult was requested for disagreement over DNR status. Patient demographic predictors of ethics consult outcomes were analyzed. In 42 of the 116 cases (36.2%), the patient or surrogate agreed to the clinician recommended DNR order following ethics consultation. In 72 of 74 (97.3%) of the remaining cases, ethics consultants recommended not offering CPR. Physicians went on to write a DNR order without patient/surrogate consent in 57 (79.2%) of those cases. There were no significant differences in age, race/ethnicity, country of origin, or functional status between patients where a DNR order was and was not placed without consent. Physicians were more likely to place a DNR order for patients believed to be imminently dying (p = 0.007). The median time from DNR order to death was 4 days with a 90-day mortality of 88.2%. In this single-center cohort study, there was no evidence that patient demographic factors affected ethics consultants' recommendation to withhold CPR despite patient/surrogate requests. Physicians were most likely to place a DNR order without consent for imminently dying patients.

Intensive care unit nurses living through COVID-19: A qualitative study.

AIMS: To understand how nurses experience providing care for patients hospitalized with COVID-19 in intensive care units. BACKGROUND: As hospitals adjust staffing patterns to meet the demands of the pandemic, nurses have direct physical contact with ill patients, placing themselves and their families at physical and emotional risk. METHODS: From June to August 2020, semi-structured interviews were conducted. Sixteen nurses caring for COVID-19 patients during the first surge of the pandemic were selected via purposive sampling. Participants worked in ICUs of a quaternary 1,000-bed hospital in the Northeast United States. Interviews were transcribed verbatim, identifiers were removed, and data were coded thematically. RESULTS: Our exploratory study identified four themes that describe the experiences of nurses providing care to patients in COVID-19 ICUs during the first surge: (a) challenges of working with new co-workers and teams, (b) challenges of maintaining existing working relationships, (c) role of nursing leadership in providing information and maintaining morale and (d) the importance of institutional-level acknowledgement of their work. CONCLUSIONS: As the pandemic continues, hospitals should implement nursing staffing models that maintain and strengthen existing relationships to minimize exhaustion and burnout. IMPLICATIONS FOR NURSING MANAGEMENT: To better support nurses, hospital leaders need to account for their experiences caring for COVID-19 patients when making staffing decisions.

Ethics Consultations Related to Opioid Use Disorder.

BACKGROUND: The opioid epidemic has resulted in an increased number of patients with opioid use disorder (OUD) hospitalized for serious medical conditions. The intersection between hospital ethics consultations and the opioid crisis has not received significant attention. OBJECTIVE: The aim of this study was to characterize ethics consult questions among inpatients with OUD at our institution, Massachusetts General Hospital. METHODS: We conducted a single-center retrospective cohort study of ethics consultations from January 1, 1993 to December 31, 2017 at Massachusetts General Hospital. RESULTS: Between 1993 and 2017, OUD played a central role in ethics consultations in 43 of 1061 (4.0%) cases. There was an increase in these requests beginning in 2009, rising from 1.4% to 6.8% of consults by 2017. Compared with other ethics cases, individuals with OUD were significantly younger (P < 0.001), more likely to be uninsured or underinsured (P < 0.001), and more likely to have a comorbid mental health diagnosis (P = 0.001). The most common reason for consultation involved continuation of life-sustaining treatment in the setting of overdose with neurological injury or severe infection. Additional reasons included discharge planning, challenges with pain management and behavior, and the appropriateness of surgical intervention, such as repeat valve replacement or organ transplant. Health care professionals struggled with their ethical obligations to patients with OUD, including when to treat pain with narcotics and how to provide longitudinal care for patients with limited resources outside of the hospital. CONCLUSION: The growing opioid epidemic corresponds with a rise in ethics consultations for patients with OUD. Similar factors associated with OUD itself, including comorbid mental health diagnoses and concerns about relapse, contributed to the ethical complexities of these consults.

Negotiating the 'buffet' of choice: advances in technology and end-of-life decision-making in the intensive care unit setting.

In recent years, increases in medical technologies in the critical care setting have advanced the practice of medicine, enabling patients to live longer while also creating dilemmas for end-of-life decision-making. Clinicians have increasingly been called on to involve patients and family members in decision-making through a process of shared decision-making (SDM), yet less is known about how SDM plays out in the critical care setting and the ways in which clinicians engage in SDM. Using observational data from 14 months of ethnographic fieldwork in two intensive care units and interviews with 33 family members of 25 critically ill patients and 51 clinicians, I explore how clinicians refer to the choices available in medical decision-making paradoxically as a 'buffet' of choice while they simultaneously recognise that such rhetoric is misaligned with complex and emotional decision-making, often involving pain and suffering. Lastly, this paper considers the role of SDM and the ways in which clinicians push back on the 'buffet' rhetoric and engage in practices to guide families in end-of-life decision-making by granting permission for families to make decisions and validating their decisions to decline treatment when there is an opportunity for more treatment.

The role of religious beliefs in ethics committee consultations for conflict over life-sustaining treatment.

Previous research has suggested that individuals who identify as being more religious request more aggressive medical treatment at end of life. These requests may generate disagreement over life-sustaining treatment (LST). Outside of anecdotal observation, however, the actual role of religion in conflict over LST has been underexplored. Because ethics committees are often consulted to help mediate these conflicts, the ethics consultation experience provides a unique context in which to investigate this question. The purpose of this paper was to examine the ways religion was present in cases involving conflict around LST. Using medical records from ethics consultation cases for conflict over LST in one large academic medical centre, we found that religion can be central to conflict over LST but was also present in two additional ways through (1) religious coping, including a belief in miracles and support from a higher power, and (2) chaplaincy visits. In-hospital mortality was not different between patients with religiously versus non-religiously centred conflict. In our retrospective cohort study, religion played a variety of roles and did not lead to increased treatment intensity or prolong time to death. Ethics consultants and healthcare professionals involved in these cases should be cognisant of the complex ways that religion can manifest in conflict over LST.

Structure, Operation, and Experience of Clinical Ethics Consultation 2007-2013: A Report from the Massachusetts General Hospital Optimum Care Committee.

We describe the structure, operation, and experience of the Massachusetts General Hospital ethics committee, formally called the Edwin H. Cassem Optimum Care Committee, from January 2007 through December 2013. Founded in 1974 as one of the nation's first hospital ethics committees, this committee has primarily focused on the optimum use of life-sustaining treatments. We outline specific sociodemographic and clinical characteristics of consult patients during this period, demographic differences between the adult inpatient population and patients for whom the ethics committee was consulted, and salient features of the consults themselves. We include three case studies that illustrate important consult themes during this period. Our findings expand knowledge about the structure and workings of hospital ethics committees and illustrate how one ethics committee has developed and utilized policies on end-of-life care. More generally, we model a sociological approach to the study of clinical ethics consultation that could be utilized to contextualize institutional practices over time.

The Medicalization of Bereavement: (Ab)normal Grief in the DSM-5.

This article examines the recently published changes to eliminate the bereavement exclusion (BE) from the criteria for the diagnosis of major depression in the fifth edition of the Diagnostic and Statistical Manual (DSM-5). Numerous scholars and critics have expressed concerns by calling these changes a "medicalization" of grief. This article first considers the removal of the BE and then examines the macrolevel and microlevel consequences of this medicalization of grief, including overdiagnosis and overtreatment, a potential expanded market for pharmaceutical companies, and the loss of traditional and cultural methods of adapting to the loss of a loved one.

Patient safety and the COVID-19 pandemic: a qualitative study of perspectives of front-line clinicians.

INTRODUCTION: Studies on the impacts of COVID-19 on patient safety are emerging. However, few studies have elicited the perspectives of front-line clinicians. METHODS: We interviewed clinicians from 16 US hospitals who worked in the emergency department, intensive care unit or inpatient unit during the COVID-19 pandemic. We asked about their experiences with both clinician well-being and patient care throughout the pandemic. We used a rigorous thematic analysis to code the interview transcripts. This study was part of a larger randomised control trial of an intervention to improve healthcare worker well-being during the COVID-19 pandemic; the findings described here draw from clinicians who spontaneously raised issues related to patient safety. RESULTS: 11 physicians and 16 nurses in our sample raised issues related to patient safety. We identified two primary themes: (1) compromised access to healthcare and (2) impaired care delivery. First, clinicians discussed how changes in access to healthcare early in the pandemic-including a shift to telehealth and deferred care-led to delays in accurate diagnosis and patients presenting later in their disease course. Second, clinicians discussed the effects of COVID-19 on care delivery related to staffing, equipment shortages and space constraints and how they deviated from the standard of care to manage these constraints. Clinicians noted how these issues led to patient safety events such as central line infections, patient falls and serious medication administration errors. CONCLUSIONS: Several well-intentioned interventions implemented in the early weeks of the pandemic created a unique context that affected patient safety throughout the pandemic. Future pandemic preparedness should consider planning that incorporates a patient safety lens to mitigate further harm from occurring during a public health crisis.

'You just don't feel like your work goes recognised': healthcare worker experiences of tension related to public discourse around the COVID-19 pandemic.

OBJECTIVES: To understand the impact of public discourse and reaction around the COVID-19 pandemic on healthcare worker (HCW) experiences and well-being caring for patients with COVID-19. METHODS: We conducted 60 min in-depth interviews with 11 physicians and 12 nurses who were providing care to patients with COVID-19 in acute care settings at two health systems in the Western USA. Interviews were conducted in Spring-Summer 2022 using a semi-structured interview protocol that guided respondents through different stages of the pandemic. RESULTS: Three themes emerged from the data around providing care in the unique social context of the COVID-19 pandemic including: (1) public polarisation and disagreement with science; (2) feelings of hope and optimism during the pandemic and (3) the compounded strain of providing care within this unique social context of the pandemic. CONCLUSIONS: To prepare for future pandemics, improved public health communications and social-emotional supports for HCWs are critical to ameliorate the physical and emotional impacts related to the social context of modern US pandemic response.

Low Tech, High Potential: Using Technology to Improve Communication across Home Care Workers.

We sought to examine how technology is currently utilized in home care and how the integration of new technologies in the completion of tasks may change the future of work for home care workers (HCWs), including personal care aides and home health aides. We triangulated data from three sources: A scoping review, interviews with HCWs, and monthly stakeholder input from 17 experts in home care and technology. Our findings suggest that while current technology use is limited and rudimentary within home care, technology may be especially beneficial in mitigating challenges around communication handoffs among HCWs. Our study points to the potential for the introduction and integration of technology into home care, particularly for communication to improve direct care worker experiences in providing care to vulnerable clients in their homes.

"It Haunts Me": Impact of COVID-19 Deaths on Frontline Clinicians In Acute Care Settings-A Qualitative Study.

BACKGROUND: The COVID-19 pandemic created unprecedented conditions for clinicians providing end-of-life care in acute care settings, yet almost 2 years since the start of the pandemic, little is known about its impact on clinicians. OBJECTIVES: To qualitatively explore how clinicians experienced their role as they cared for dying patients with COVID-19 during the pandemic and the impact of these experiences on their lives as health care professionals. METHODS: In-depth, hour-long interviews were conducted by phone in the spring of 2022 at a single time point with 23 physicians and nurses in critical care and emergency department settings from 2 health systems in California. The goal was to elicit perspectives on experiences with end-of-life care and the long-term impact of these experiences. Clinicians were asked to reflect on the different stages of the pandemic, and interviews were analyzed using a thematic analysis. RESULTS: The interviews highlighted 2 primary themes around provision of end-of-life care during the COVID-19 pandemic. First, clinicians described challenges around their clinical duties of providing care to dying patients, which included decision-making dilemmas and professionalism challenges. Second, clinicians described the emotional aspects around end-of-life care situations they experienced, including communication with family members, "being patients' family members" at the end of life, and various degrees of meaning-making and remembrance of these experiences. CONCLUSIONS: The findings highlight the sustained and cumulative emotional challenges and burden clinicians are still shouldering more than 2 years after the start of the pandemic.

"Palliative Care Is the Only Medical Field That I Feel Like I'm Treated As a Person, Not As a Black Person": A Mixed-Methods Study of Minoritized Patient Experiences with Palliative Care.

Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Setting/Subjects: Patients receiving outpatient palliative care (n = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. Measurements: We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Results: Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, p = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, p = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.

An Evaluation of a Multisite, Health Systems-Based Direct Care Worker Retention Program: Key Findings and Recommendations.

The U.S. direct care workforce employs nearly 4.6 million people and represents one of the fastest growing occupations in the United States. Direct care workers, or "caregivers," include nursing assistants, home care workers, and residential care aides, all of whom provide basic care to older adults and individuals with disabilities in various health care settings. Despite a growing need for caregivers, supply has not kept up with demand due to high turnover and low wages. In addition, caregivers often face high levels of workplace stress, limited training and growth opportunities, and personal stressors. Ranging from 35 to 90 percent, depending on the health care setting, the turnover rates of direct care workers pose a major challenge for health systems, as well as care recipients and workers themselves. In 2019, the Ralph C. Wilson Jr. Foundation funded three health systems to support the implementation of a new program: Transformational Healthcare Readiness through Innovative Vocational Education (THRIVE). This 12-month program was designed to help address barriers that entry-level caregivers experience and reduce turnover through a comprehensive risk assessment, training, and one-on-one coaching. Researchers from RAND conducted a process and outcome evaluation to determine whether THRIVE was meeting its goals of improving retention and achieving a positive return on investment (ROI). They also examined potential areas for program improvement.

Beyond the hour of death: Family experiences of grief and bereavement following an end-of-life hospitalization in the intensive care unit.

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers across the United States.

Background: The COVID-19 pandemic introduced a rapid adoption and scale-up of telehealth for palliative care services in the United Sates. Objectives: To examine and compare in-person versus telehealth experience among outpatient palliative care programs and patients. Design: Mixed-methods study (1) comparing patient experience survey data received between September 2020 and February 2021 from patients who received only in-person care versus those who received only telehealth and (2) qualitative interviews with outpatient palliative care providers. Data for this study were collected as part of a larger effort to develop quality measures for outpatient palliative care in the United States. Setting/Subjects: Outpatient palliative care patients and programs. Measurements: We measured patients' experiences of "feeling heard and understood" by their palliative care provider and team and their overall rating of their provider and team. We also conducted in-depth semistructured interviews with 47 palliative care providers across 25 outpatient palliative care programs. Results: Of 1753 patient experience surveys, 26% reflected telehealth only versus 74% in-person only. Patients in both groups reported highly positive experiences; there were no differences in "feeling heard and understood" or the overall ratings of the provider and team between the telehealth-only and in-person-only groups. Palliative care program leaders described the benefits and challenges of telehealth, including increased efficiency, the ability to incorporate family members, and challenges conducting a physical examination. Conclusion: Data from this study provide preliminary evidence of overall positive experiences of telehealth for outpatient palliative care among patients and providers; future research is needed to examine the sustainability of telehealth for palliative care.

Incorporating the Patient and Caregiver Voice in Palliative Care Quality Measure Development.

CONTEXT: Despite rapid growth in outpatient palliative care, we lack an understanding of patient and caregiver experiences of care received in this context. OBJECTIVES: As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice. METHODS: We conducted 25 one-hour telephone cognitive interviews using a convenience sample of outpatient palliative care patients and caregivers to cognitively test survey items. Guided by a semi-structured protocol, we assessed the comprehensibility, ambiguity, and adaptability of survey instructions and specific items/response options. RESULTS: Participants generally understood the intended meaning of the question content. Some participants struggled with the stated time period of three months as a reference period for reporting their experiences. While some expressed preferences for question wording, no clear patterns emerged across participants. CONCLUSION: In general, question wording and response options did not present challenges to understanding content. Respondents ascribed a variety of meanings to the concepts, validating that the measures capture a range of experiences. However, the referenced timeframe of three months was more difficult to answer for some questions than others. Implications for research, policy or practice: Based on the findings from the cognitive testing, the survey items are being tested as part of a national study to understand the quality of care for patients. These measures may be used in the future by Medicare to help outpatient palliative care programs improve their care.

Patient, Family Caregiver, and Provider Perceptions on Self-Assessment Screening for Cognitive Impairment in Primary Care: Findings From a Qualitative Study.

The purpose of this study was to evaluate patient, family, and provider perspectives on routine cognitive screening of older adults in primary care using a novel self-assessment tool for detection of early cognitive impairment (CI). We conducted four virtual focus groups with patients aged 65 and older with no CI (n = 18) and family caregivers of patients with CI (n = 5) and interviews with primary care providers (n = 11). Patient and family caregiver participants felt that early detection of CI was important in primary care and may facilitate planning for the future including finances, living arrangements, and advance care planning. Providers reported that they do not use a standardized tool to routinely screen patients for CI yet endorsed the use of a self-assessment CI screening tool. These results suggest that routine screening of older adults using a brief, self-assessment screening tool for CI in primary care may be acceptable to patients, family caregivers, and providers. The findings from this study will inform the development of a brief self-assessment CI screening tool for use in primary care.