Serious illness care quality during COVID-19: Identifying improvement opportunities in narrative reports from a National Bereaved Family Survey.

BACKGROUND: COVID-19 significantly impacted care delivery to seriously ill patients, especially around including family and caregivers in patient care. AIM: Based on routinely collected bereaved family reports, actionable practices were identified to maintain and improve care in the last month of life, with potential application to all seriously ill patients. DESIGN: The Veterans Health Administration's Bereaved Family Survey is used nationally to gather routine feedback from families and caregivers of recent in-patient decedents; the survey includes multiple structured items as well as space for open narrative responses. The responses were analyzed using qualitative content analysis with dual review. SETTING/PARTICIPANTS: Between February 2020 and March 2021, there were 5372 responses to the free response questions of which 1000 (18.6%) responses were randomly selected. The 445 (44.5%) responses from 377 unique individuals included actionable practices. RESULTS: Bereaved family members and caregivers identified four opportunities with a total of 32 actionable practices. Opportunity 1: Facilitate the use of video communication, included four actionable practices. Opportunity 2: Provide timely and accurate responses to family concerns, included 17 actionable practices. Opportunity 3: Accommodate family/caregiver visitation, included eight actionable practices. Opportunity 4: Offer physical presence to the patient when family/caregivers are unable to visit, included three actionable practices. CONCLUSION: The findings from this quality improvement project are applicable during a pandemic, but also translate to improving the care of seriously ill patients in other circumstances, such as when family members or caregivers are geographically distant from a loved one during the last weeks of life.

Patient Characteristics Associated With Occurrence of Preoperative Goals-of-Care Conversations.

Importance: Communication about patients' goals and planned and potential treatment is central to advance care planning. Undertaking or confirming advance care plans is also essential to preoperative preparation, particularly among patients who are frail or will undergo high-risk surgery. Objective: To evaluate the association between patient risk of hospitalization or death and goals-of-care conversations documented with a completed Life-Sustaining Treatment (LST) Decisions Initiative note among veterans undergoing surgery. Design, Setting, and Participants: This retrospective cross-sectional study included 190 040 veterans who underwent operations between January 1, 2017, and February 28, 2020. Statistical analysis took place from November 1, 2021, to November 17, 2022. Exposure: Patient risk of hospitalization or death, evaluated with a Care Assessment Need (CAN) score (range, 0-99, with a higher score representing a greater risk of hospitalization or death), dichotomized as less than 80 or 80 or more. Main Outcomes and Measures: Preoperative LST note completion (30 days before or on the day of surgery) or no LST note completion within the 30-day preoperative period prior to or on the day of the index operation. Results: Of 190 040 veterans (90.8% men; mean [SD] age, 65.2 [11.9] years), 3.8% completed an LST note before surgery, and 96.2% did not complete an LST note. In the groups with and without LST note completion before surgery, most were aged between 65 and 84 years (62.1% vs 56.7%), male (94.3% vs 90.7%), and White (82.2% vs 78.3%). Compared with patients who completed an LST note before surgery, patients who did not complete an LST note before surgery tended to be female (9.3% vs 5.7%), Black (19.2% vs 15.7%), married (50.2% vs 46.5%), and in better health (Charlson Comorbidity Index score of 0, 25.9% vs 15.2%); to have a lower risk of hospitalization or death (CAN score <80, 98.3% vs 96.9%); or to undergo neurosurgical (9.8% vs 6.2%) or urologic surgical procedures (5.9% vs 2.0%). Over the 3-year interval, unadjusted rates of LST note completion before surgery increased from 0.1% to 9.6%. Covariate-adjusted estimates of LST note completion indicated that veterans at a relatively elevated risk of hospitalization or death (CAN score ≥80) had higher odds of completing an LST note before surgery (odds ratio [OR], 1.29; 95% CI, 1.09-1.53) compared with those with CAN scores less than 80. High-risk surgery was not associated with increased LST note completion before surgery (OR, 0.93; 95% CI, 0.86-1.01). Veterans who underwent cardiothoracic surgery had the highest likelihood of LST note completion before surgery (OR, 1.35; 95% CI, 1.24-1.47). Conclusions and Relevance: Despite increasing LST note implementation, a minority of veterans completed an LST note preoperatively. Although doing so was more common among veterans with an elevated risk compared with those at lower risk, improving proactive communication and documentation of goals, particularly among higher-risk veterans, is needed. Doing so may promote goal-concordant surgical care and outcomes.

"It's Not Us Versus Them": Building Cross-Disciplinary Relationships in the Perioperative Period.

CONTEXT: Palliative care (PC) interventions improve quality outcomes for surgical patients, yet they are underutilized in the perioperative period. Developing cross-disciplinary provider relationships increases PC consults. However, the attributes of collaborative relationships and how they evolve are unclear. OBJECTIVES: To identify perceptions of PC providers and surgeons on how collaborative cross-disciplinary relationships are built and maintained in the perioperative period. METHODS: This cross-sectional multiphase qualitative study included 23 semistructured interviews with 10 PC teams (20 providers) and 13 surgeons at geographically distributed Veteran Health Administration (VHA) sites. An analytic approach relied on team-based thematic analysis with a dual review (Krippendorf α above 0.8). RESULTS: Respondents defined successful collaborative work relationships between PC and surgeons as having the following features: 1) mutual trust; 2) mutual respect; 3) perceived usefulness; 4) shared clinical objectives; 5) effective communication; and 6) organizational enablers. In addition, the analysis elucidated a framework of six strategies for developing collaborative relationships between PC and surgical teams in the perioperative period: 1) being present, available, and responsive; 2) understanding roles; 3) establishing communication; 4) recognizing an intermediary and connecting role of supporting team members; 5) working as a team; and 6) building on previous experiences. CONCLUSION: The study informs future interventions to improve the quality of care for seriously ill patients by better-involving PC in the perioperative period. Future work will extend this approach to incorporate the perspectives of patients on their providers' collaboration and how it impacts patient-related outcomes at the intersection of PC and surgery.

Using Family Narrative Reports to Identify Practices for Improving End-of-Life Care Quality.

CONTEXT: Patient experiences should be considered by healthcare systems when implementing care practices to improve quality of end-of-life care. Families and caregivers of recent in-patient decedents may be best positioned to recommend practices for quality improvement. OBJECTIVES: To identify actionable practices that bereaved families highlight as contributing to high quality end-of-life care. METHODS: We conducted qualitative content analysis of narrative responses to the Bereaved Family Surveys Veterans Health Administration inpatient decedents. Out of 5964 completed surveys in 2017, 4604 (77%) contained at least one word in response to the open-ended questions. For feasibility, 1500/4604 responses were randomly selected for analysis. An additional 300 randomly selected responses were analyzed to confirm saturation. RESULTS: Over 23% percent (355/1500) of the initially analyzed narrative responses contained actionable practices. By synthesizing narrative responses to the BFS in a national healthcare system, we identified 98 actionable practices reported by the bereaved families that have potential for implementation in QI efforts. Specifically, we identified 67 end-of-life practices and 31 practices in patient-centered care domains of physical environment, food, staffing, coordination, technology and transportation. The 67 cluster into domains including respectful care and communication, emotional and spiritual support, death benefits, symptom management. Sorting these practices by target levels for organizational change illuminated opportunities for implementation. CONCLUSION: Narrative responses from bereaved family members can yield approaches for systematic quality improvement. These approaches can serve as a menu in diverse contexts looking for approaches to improve patient quality of death in in-patient settings.

Palliative Care and Documented Suicide: Association Among Veterans With High Mortality Risk.

CONTEXT: Palliative care consultations (PCCs) are associated with reduced physical and psychological symptoms that are related to suicide risk. Little is known, however, about the association between PCCs and death from suicide among patients at high risk of short-term mortality. OBJECTIVE: To examine the association between the number of PCCs and documentation of suicide in a cohort of Veterans at high risk of short-term mortality, before and after accounting for Veterans' sociodemographic characteristics and clinical conditions. METHODS: An observational cohort study was conducted using linked Veterans Affairs clinical and administrative databases for 580,620 decedents with high risk of one-year mortality. Logistic regression models were used to examine the association between number of PCCs and documentation of suicide. RESULTS: Higher percentages of Veterans who died by suicide were diagnosed with chronic pulmonary disease as well as mental health/substance use conditions compared with Veterans who died from other causes. In adjusted models, one PCC in the 90 days prior to death was significantly associated with a 71% decrease in the odds of suicide (OR = 0.29, 95% CI = 0.23-0.37, P < 0.001) and two or more PCCs were associated with a 78% decrease (OR = 0.22, 95% CI = 0.15-0.33, P < 0.001). Associated "number needed to be exposed" estimates suggest that 421 Veterans in this population would need to receive at least one PCC to prevent one suicide. CONCLUSION: While acknowledging the importance of specialized mental health care in reducing suicide among high-risk patients, interventions delivered in the context of PCCs may also play a role.

End-Of-Life Care in the Time of COVID-19: Communication Matters More Than Ever.

CONTEXT: The COVID-19 pandemic resulted in visitation restrictions across most health care settings, necessitating the use of remote communication to facilitate communication among families, patients and health care teams. OBJECTIVE: To examine the impact of remote communication on families' evaluation of end-of-life care during the COVID-19 pandemic. METHODS: Retrospective, cross-sectional, mixed methods study using data from an after-death survey administered from March 17-June 30, 2020. The primary outcome was the next of kin's global assessment of care during the Veteran's last month of life. RESULTS: Data were obtained from the next-of-kin of 328 Veterans who died in an inpatient unit (i.e., acute care, intensive care, nursing home, hospice units) in one of 37 VA medical centers with the highest numbers of COVID-19 cases. The adjusted percentage of bereaved families reporting excellent overall end-of-life care was statistically significantly higher among those reporting Very Effective remote communication compared to those reporting that remote communication was Mostly, Somewhat, or Not at All Effective (69.5% vs. 35.7%). Similar differences were observed in evaluations of remote communication effectiveness with the health care team. Overall, 81.3% of family members who offered positive comments about communication with either the Veteran or the health care team reported excellent overall end-of-life care vs. 28.4% who made negative comments. CONCLUSIONS: Effective remote communication with the patient and the health care team was associated with significantly better ratings of the overall experience of end-of-life care by bereaved family members. Our findings offer timely insights into the importance of remote communication strategies.

Implementing Goals-of-Care Conversations: Lessons From High- and Low-Performing Sites From a VA National Initiative.

CONTEXT: The Veterans Health Administration (VA) National Center for Ethics in Healthcare implemented the Life-Sustaining Treatment Decisions Initiative, including policy and practice standards, clinician communication training, a documentation template, and central implementation support to foster advance care planning via goals-of-care conversations for seriously ill veterans in 2014, spreading nationally to other Veterans Health Affairs (VA) sites in 2017. OBJECTIVES: Our goal was to describe the range of early implementation experiences among the pilot sites, and compare them with spread sites that implemented LSTDI about two years later, identifying cross-site best practices and pitfalls. METHODS: We conducted semistructured interviews with 32 key stakeholders from 12 sites to identify cross-site best practices and pitfalls related to implementation. RESULTS: Three primary implementation themes emerged: organizational readiness for transformation, importance of champions, and time and resources needed to achieve implementation. Each theme's barriers and facilitators highlighted variability in success based on complexity in terms of vertical hierarchy and horizontal cross-role/cross-clinic relationships. CONCLUSION: Learning health care systems need multilevel interdisciplinary implementation approaches to support communication about serious illness, from broad-based system-level training and education to build communication skills, to focusing on characteristics of successful individual champions who listen to critics and are tenacious in addressing concerns.

Pilot of the Life-Sustaining Treatment Decisions Initiative Among Veterans With Serious Illness.

BACKGROUND: Prior to national spread, the Department of Veterans Affairs implemented a pilot of the life-sustaining treatment decisions initiative (LSTDI) to promote proactive goals of care conversations (GoCC) with seriously ill patients, including policy and practice standards, an electronic documentation template and order set, and implementation support. AIM: To describe a 2-year pilot of the LSTDI at 4 demonstration sites. DESIGN: Prospective observational study. SETTING/PARTICIPANTS: A total of 6664 patients who had at least one GoCC. RESULTS: Descriptive statistics characterized patient demographics, goals of care, LST decisions, and risk of hospitalization or mortality among patients with at least one GoCC. Participants were on average 71.4 years old, 93.2% male, 87.1% white, and 64.7% urban; 27.3% died by the end of the pilot period. Fifteen percent lacked decision-making capacity (DMC). Nonmutually exclusive goals included to be cured (7.6%), to prolong life (34%), to improve/maintain quality of life (61.5%), to be comfortable (53%), to obtain support for family/caregiver (8.4%), to achieve life goals (2.1%), and other (10.5%). Many GoCCs resulted in a do not resuscitate (DNR) order (58.8%). Patients without DMC were more likely to have comfort-oriented goals (77.3% vs 48.8%) and a DNR (84% vs 52.6%). Chart abstraction supported content validity of GoCC documentation. CONCLUSION: The pilot demonstrated that standardizing practices for eliciting and documenting GoCCs resulted in customized documentation of goals of care and LST decisions of a large number of seriously ill patients and established the feasibility of spreading standardized practices throughout a large integrated health care system.

"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End-of-Life Communication During COVID-19.

BACKGROUND/OBJECTIVE: The COVID-19 pandemic has resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic. DESIGN: Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis. SETTING: VA medical centers with the highest numbers of COVID-19 cases during the study period. PARTICIPANTS: Next-of-kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units. MEASUREMENTS: Open-ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies. RESULTS: Bereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies. CONCLUSION: Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.

Top Ten Tips Palliative Care Providers Should Know About Caring for Veterans.

Many of America's Veterans have unique medical and psychosocial needs related to their military service. Since most medical care received by Veterans occurs outside of the Department of Veterans Affairs (VA) health care system, it is imperative that all medical providers have a working understanding of the unique needs of Veterans and some of the many programs and services available to Veterans through the VA. This article, created by an interdisciplinary team of palliative care and hospice providers who care for Veterans throughout the country, seeks to improve the comfort with which non-VA clinicians care for Veterans while increasing knowledge about programs for which Veterans might qualify through the VA.

Increasing Veterans' Hospice Use: The Veterans Health Administration's Focus On Improving End-Of-Life Care.

In 2009 the Department of Veterans Affairs (VA) began a major, four-year investment in improving the quality of end-of-life care. The Comprehensive End of Life Care Initiative increased the numbers of VA medical center inpatient hospice units and palliative care staff members as well as the amount of palliative care training, quality monitoring, and community outreach. We divided male veterans ages sixty-six and older into categories based on their use of the VA and Medicare and examined whether the increases in their rates of hospice use in the last year of life differed from the concurrent increase among similar nonveterans enrolled in Medicare. After adjusting for age, race and ethnicity, diagnoses, nursing home use in the last year of life, census region, and urbanicity of a person's last residence, we found a 6.9-7.9-percentage-point increase in hospice use over time for the veteran categories, compared to a 5.6-percentage-point increase for nonveterans (the relative increases were 20-42 percent and 16 percent, respectively). The VA's substantial investment in palliative care appears to have resulted in greater hospice use by older male veterans enrolled in the VA, a critical step forward in caring for veterans with serious illnesses.

The rise of concurrent care for veterans with advanced cancer at the end of life.

BACKGROUND: Unlike Medicare, the Veterans Health Administration (VA) health care system does not require veterans with cancer to make the "terrible choice" between receipt of hospice services or disease-modifying chemotherapy/radiation therapy. For this report, the authors characterized the VA's provision of concurrent care, defined as days in the last 6 months of life during which veterans simultaneously received hospice services and chemotherapy or radiation therapy. METHODS: This retrospective cohort study included veteran decedents with cancer during 2006 through 2012 who were identified from claims with cancer diagnoses. Hospice and cancer treatment were identified using VA and Medicare administrative data. Descriptive statistics were used to characterize the changes in concurrent care, hospice, palliative care, and chemotherapy or radiation treatment. RESULTS: The proportion of veterans receiving chemotherapy or radiation therapy remained stable at approximately 45%, whereas the proportion of veterans who received hospice increased from 55% to 68%. The receipt of concurrent care also increased during this time from 16.2% to 24.5%. The median time between hospice initiation and death remained stable at around 21 days. Among veterans who received chemotherapy or radiation therapy in their last 6 months of life, the median time between treatment termination and death ranged from 35 to 40 days. There was considerable variation between VA medical centers in the use of concurrent care (interquartile range, 16%-34% in 2012). CONCLUSIONS: Concurrent receipt of hospice and chemotherapy or radiation therapy increased among veterans dying from cancer without reductions in the receipt of cancer therapy. This approach reflects the expansion of hospice services in the VA with VA policy allowing the concurrent receipt of hospice and antineoplastic therapies. Cancer 2016;122:782-790. © 2015 American Cancer Society.

A Systematic Review of Family Meeting Tools in Palliative and Intensive Care Settings.

PURPOSE: Family meetings can be challenging, requiring a range of skills and participation. We sought to identify tools available to aid the conduct of family meetings in palliative, hospice, and intensive care unit settings. METHODS: We systematically reviewed PubMed for articles describing family meeting tools and abstracted information on tool type, usage, and content. RESULTS: We identified 16 articles containing 23 tools in 7 categories: meeting guide (n = 8), meeting planner (n = 5), documentation template (n = 4), meeting strategies (n = 2), decision aid/screener (n = 2), family checklist (n = 1), and training module (n = 1). We found considerable variation across tools in usage and content and a lack of tools supporting family engagement. CONCLUSION: There is need to standardize family meeting tools and develop tools to help family members effectively engage in the process.

Developing an informatics tool to advance supportive care: the Veterans Health Care Administration Palliative Care National Clinical Template.

BACKGROUND: Increasing emphasis in performance-based payment, public reporting, and quality improvement (QI) has led to widespread interest in measuring and improving the quality of care. By 2014, hospice programs will be required to report quality data to the federal government or incur financial penalties. With this increased interest in quality reporting comes an opportunity to develop informatics tools to capture data that reflect the complex practices involved in palliative care (PC). Therefore, there is a need to disseminate information on developing tools that facilitate capturing data and fostering improved performance. The Veterans Health Care Administration, a national leader in health information technology (HIT) and PC, established the Quality Improvement Resource Center (QuIRC) to develop innovative HIT tools to standardize and improve PC practices throughout the 153 Department of Veterans Affairs (VA) medical centers nationwide. OBJECTIVE: The aim of the paper is to describe the development of the Palliative Care-National Clinical Template (PC-NCT) for documenting initial PC consults. RESULTS: Domains of quality of life provided the foundation for this template. Principles of user-centered informatics design guided development activities. A national consensus panel of PC experts prioritized quality indicators as targets for QI. An interdisciplinary team of PC providers identified desired aspects of template functionality. QuIRC balanced PC providers' desired aspects of functionality against the feasibility within the VA HIT system. Formal pilot and usability testing contributed to numerous iterations of the PC-NCT currently piloted in five geographically distributed sites. CONCLUSION: This paper presents a robust approach to developing an informatics tool for PC practice. Data collected via the PC-NCT will bring variations in current practice into view and assist in directing resources at "important targets" for QI. Although the development of HIT tools to quantify PC practice is complex, there is enormous potential to improve the quality of care for patients and families facing serious illnesses.

Continuous subcutaneous infusion of opiates at end-of-life.

OBJECTIVE: To review pertinent controlled trials using the continuous subcutaneous infusion of opioids (CSIO) at end-of-life and offer insight to pharmacists and clinicians into the appropriate use of this route of administration. DATA SOURCES: A MEDLINE search for information regarding the subcutaneous administration of opioids in terminally ill patients (1975-December 2002) was conducted using the key words subcutaneous, narcotics, morphine, hydromorphone, fentanyl, pain, hospices, and palliative care. Additional references were located through review of bibliographies of the articles cited. Case reports and postsurgical studies were excluded. Searches were limited to English-language studies using humans. STUDY SELECTION AND DATA EXTRACTION: Experimental and observational studies were evaluated, using prospective trials as the evidence base for conclusions and including pertinent retrospective trials as they relate to the subcutaneous infusion of opioids at end-of-life. DATA SYNTHESIS: CSIO is effective and safe for use in terminal illness. Appropriate situations for consideration of CSIO are when difficulties arise in using the oral route, standard oral opiate therapy has failed adequate trials, the patient has limited intravenous access, adequate supervision of the CSIO is present, and CSIO will not unduly limit the functional activity of the patient. CONCLUSIONS: CSIO has a proven role in the management of pain at end-of-life. CSIO should not be considered the first route for administration of opiates, but does offer distinct advantages in the appropriate setting. CSIO continues to be a choice for end-of-life patients and is gradually becoming a standard practice in palliative medicine.