'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.

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.

"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.

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.

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.

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.

"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.

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.

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.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Receiving Desired Help for Pain.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Receiving Desired Help for Pain performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

MACRA Palliative Care Quality Measure Development-Testing Summary Report: Measure Name: Feeling Heard and Understood.

Palliative care has expanded rapidly in the past 20 years, especially in the ambulatory (office) setting, and there is growing consensus regarding the need to systematically measure and incentivize high-quality care. The Centers for Medicare & Medicaid Services entered a cooperative agreement with the American Academy of Hospice and Palliative Medicine (AAHPM) as part of the Medicare Access and CHIP Reauthorization Act of 2015 to develop two patient-reported measures of ambulatory palliative care experience: Feeling Heard and Understood and Receiving Desired Help for Pain. Under contract to AAHPM, RAND Health Care researchers developed and tested both measures over a three-year project period. Researcher efforts included identifying, developing, testing, and validating appropriate patient-reported data elements for each measure; developing and fielding a survey instrument to collect necessary data in a national beta field test with 44 ambulatory palliative care programs; and collecting and analyzing data about measure reliability and validity to establish measure performance and final specifications. Further, the authors elicited provider and program perspectives on the use and value of the performance measures and their implementation and elicited the perspectives of patients from racial and ethnic minorities to understand their experience of ambulatory palliative care and optimal approaches to measurement. In this study, the authors present results from their test of the Feeling Heard and Understood performance measure, which they demonstrate to be a reliable and valid measure that is ready for use in quality improvement and quality payment programs.

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.

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.

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.

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.

Encountering the social determinants of health on a COVID-19 ICU: Frontline providers' perspectives on inequality in a time of pandemic.

Efforts to improve health equity may be advanced by understanding health care providers' perceptions of the causes of health inequalities. Drawing on data from in-depth interviews with nurses and registered respiratory therapists (RRTs) who served on intensive care units (ICUs) during the first surge of the pandemic, this paper examines how frontline providers perceive and attribute the unequal impacts of COVID-19. It shows that nurses and RRTs quickly perceived the pandemic's disproportionate burden on Black and Latinx individuals and families. Providers attribute these inequalities to the social determinants of health, and also raise questions about how barriers to healthcare access may have made some patients more vulnerable to the worst consequences of COVID-19. Providers' perceptions of inequality and its consequences on COVID-19 ICUs were emotionally impactful and distressing, suggesting that this is a critical moment for offering clinicians practical strategies for understanding and addressing the persistent structural inequities that cause racial inequalities in health.

Impact of group visits for older patients with heart failure on advance care planning outcomes: Preliminary data.

OBJECTIVE: Advance care planning (ACP) is critically important for heart failure patients, yet important challenges exist. Group visits can be a helpful way to engage patients and caregivers in identifying values and preferences for future care in a resource-efficient way. We sought to evaluate the impact of group visits for ACP among older adults with heart failure and their caregivers on ACP-related outcomes. METHODS: We conducted a mixed-methods pilot study evaluating the impact of an ACP group visit for older adults with heart failure and their caregivers on ACP-related outcomes including readiness and self-efficacy. The evidence-based PREPARE for Your Care video-based intervention was used to guide the group visits. Twenty patients and 10 caregivers attended one of the five 90-min group visits led by a trained facilitator. Group visit participants completed pre-, post-, and 1-month follow-up surveys using validated 5-point ACP readiness and self-efficacy scales. Qualitative feedback obtained within 3 days of a group visit was analyzed using a directed content analysis. RESULTS: Patient participants had a median age of 78 years. Approximately half were female while caregiver participants were mostly female. Participants were predominantly white. Patient readiness scores improved significantly pre-to-post (+0.53; p = 0.002) but was not sustained at 1-month follow-up. Patient and caregiver self-efficacy showed some improvement pre-to-post but was also not sustained at follow-up. Interviews revealed positive impacts of group visits across the three themes: encouraging reviewing or revisiting prior ACP activities, motivating patients to take direct steps towards ACP, and serving as a "wake-up" call to action. CONCLUSIONS: Disease-focused group visits may have a short-term effect on ACP outcomes but ongoing touchpoints are likely necessary to sustain ACP over time. The results highlight a need for follow-up ACP conversations after a single group visit. Timing for follow-ups and the ideal person to follow-up ACP conversations needs to be explored.

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.

"If We Turned Our Backs, They Would Ignore Our Wishes": Bereaved Family Perceptions of Concordance of Care at the End of Life.

Background: The key to high-quality care at the end of life is goal-concordant care, defined as care that is consistent with patient wishes. Objectives: To characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored. Design: Mortality follow-back survey and in-depth interviews. Setting/Subjects: Survey responses (n = 601) were from next of kin of decedents who died in the San Francisco Bay area of the United States. Interviews were conducted with 51 next of kin, of whom 14 indicated that the decedent received care that was inconsistent with their wishes. Measurements: The survey asked if the decedent had wishes or plans for care and if care provided ever went against those wishes. In-depth interviews focused on aspects of care at the end of life that were not consistent with the decedent's wishes. Results: Approximately 10% of next of kin who reported on the survey that the decedent had specific wishes for medical care at the end of life also reported that the decedent received care that went against their wishes in the last month of life. The main theme of the in-depth interviews with next of kin who reported care that went against wishes was that discordant care was inconsistent with wishes for comfort-focused care and a lack of symptom palliation. Conclusions: Despite decades of work to improve quality of end-of-life care, poor pain and symptom management that result in lack of comfort remain the main reason that next of kin state wishes were not honored.