Comparison of Two Methods for Implementing Comfort Care Order Sets in the Inpatient Setting: a Cluster Randomized Trial.

BACKGROUND: There is an ongoing need for interventions to improve quality of end-of-life care for patients in inpatient settings. OBJECTIVE: To compare two methods for implementing a Comfort Care Education Intervention for Palliative Care Consultation Teams (PCCT) in Veterans Affairs Medical Centers (VAMCs). DESIGN: Cluster randomized implementation trial conducted March 2015-April 2019. PCCTs were assigned to a traditional implementation approach using a teleconference or to an in-person, train-the-champion workshop to prepare PCCTs to be clinical champions at their home sites. PARTICIPANTS: One hundred thirty-two providers from PCCTs at 47 VAMCs. INTERVENTIONS: Both training modalities involved review of educational materials, instruction on using an electronic Comfort Care Order Set, and coaching to deliver the intervention to other providers. MAIN MEASUREMENTS: Several processes of care were identified a priori as quality endpoints for end-of-life care (last 7 days) and abstracted from medical records of veterans who died within 9 months before or after implementation (n = 6,491). The primary endpoint was the presence of an active order for opioid medication at time of death. Secondary endpoints were orders/administration of antipsychotics, benzodiazepines, and scopolamine, do-not-resuscitate orders, advance directives, locations of death, palliative care consultations, nasogastric tubes, intravenous lines, physical restraints, pastoral care visits, and family presence at/near time of death. Generalized estimating equations were conducted adjusting for potential covariates. KEY RESULTS: Eighty-eight providers from 23 VAMCs received teleconference training; 44 providers from 23 VAMCs received in-person workshop training. Analyses found no significant differences between intervention groups in any process-of-care endpoints (primary endpoint AOR (CI) = 1.18 (0.74, 1.89). Furthermore, pre-post changes were not significant for any endpoints (primary endpoint AOR (CI) = 1.16 (0.92, 1.46). Analyses may have been limited by high baseline values on key endpoints with little room for improvement. CONCLUSION: Findings suggest the clinical effectiveness of palliative care educational intervention was not dependent on which of the two implementation methods was used. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT02383173.

The Relationship of Post-traumatic Stress Disorder to End-of-life Care Received by Dying Veterans: a Secondary Data Analysis.

BACKGROUND: Post-traumatic stress disorder (PTSD) can be exacerbated by subsequent trauma, but it is unclear if symptoms are worsened by impending death. PTSD symptoms, including hyperarousal, negative mood and thoughts, and traumatic re-experiencing, can impact end-of-life symptoms, including pain, mood, and poor sleep. Thus, increased symptoms may lead to increased end-of-life healthcare utilization. OBJECTIVES: To determine if veterans with PTSD have increased end-of-life healthcare utilization or medication use and to examine predictors of medication administration. DESIGN: Secondary analysis of a stepped-wedge design implementation trial to improve end-of-life care for Veterans Affairs (VA) inpatients. Outcome variables were collected via direct chart review. Analyses included hierarchical, generalized estimating equation models, clustered by medical center. SUBJECTS: Veterans, inpatient at one of six VA facilities, dying between 2005 and 2011. MAIN MEASURES: Emergency room (ER) visits, hospitalizations, and medication administration in the last 7 days of life. KEY RESULTS: Of 5341 veterans, 468 (8.76%) had PTSD. Of those, 21.4% (100/468) had major depression and 36.5% (171/468) had anxiety. Veterans with PTSD were younger (mean age 65.4 PTSD, 70.5 no PTSD, p < 0.0001) and had more VA hospitalizations and ER visits in the last 12 months of life (admissions: PTSD 2.8, no PTSD 2.4, p < 0.0001; ER visits: 3.2 vs 2.5, p < 0.0001). PTSD was associated with antipsychotic administration (OR 1.52, 95% CI 1.06-2.18). Major depression (333/5341, 6.2%) was associated with opioid administration (OR 1.348, 95% CI 1.129-1.609) and benzodiazepines (OR 1.489, 95% CI 1.141-1.943). Anxiety disorders (778/5341, 14.6%) were only associated with benzodiazepines (OR 1.598, 95% CI 1.194-2.138). CONCLUSIONS: PTSD's association with increased end-of-life healthcare utilization and increased antipsychotic administration in the final days of life suggests increased symptom burden and potential for terminal delirium in individuals with PTSD. Understanding the burden of psychiatric illness and potential risks for delirium may facilitate the end-of-life care for these patients. TRIAL REGISTRATION: NCT00234286.

"They Said on the Death Certificate But Really What I Think Happened": Characterizing Cause of Death in VA Medical Centers.

Cause of death information is a vital resource for family and public health, yet significant issues persist regarding its determination, documentation and communication. In this study, we aim to characterize cause of death attribution process from the perspective of next-of-kin of Veterans who died in Veterans Affairs (VA) Medical Centers. Using a semi-structured guide, we explored next-of-kin's experiences of the Veteran's terminal hospitalization and conducted a content analysis of interview texts. In over two-third of cases next-of-kin's understanding was not consistent with their recollection of physicians' determination of cause of death. Discrepancies between official cause of death and lay understanding engendered confusion and distress. Findings have relevance for shaping the context of post-death patient/family-centered clinical practice and serve as a means for improving efficacy of cause of death communication and reducing potential for misunderstandings.

"He's on his dying bed": Next-of-kin's experiences of the dying body.

For family members of dying patients who have grown accustomed to providing daily body care, the transition from home to hospital is stressful. The authors used the experiences surrounding death for 78 U.S. veterans who died in a Veterans Affairs hospital. The research is based on interviews conducted with the decedent's next-of-kin. Secondary qualitative analysis of previously-coded transcribed interviews was used. Themes of social disorganization and a loss of control over the body emerged. Next-of-kin experienced the physical and functional breakdown of their loved one's body. Understanding the nature of the loss of control may help alleviate the loss of control may help alleviate the strain on families.

"I was ready to take him home": next-of-kin's accounts of loved one's death during hospice and palliative care discussions in Veterans Affairs Medical Centers.

This study explored next-of-kin's retrospective accounts of hospice and palliative care discussions for hospitalized veterans. In-depth, face-to-face interviews were used to generate narrative accounts of 78 next-of-kin's experience of their loved one's hospital care during the last days of the patient's life. One-third of participants reported taking part in a hospice or palliative care discussion during the patient's final hospitalization. In over one-half of those cases, the patients died before discharge or transfer to hospice or palliative care was accomplished. Hospice and palliative care discussions in the hospital setting shaped family perceptions of the patients' care, directed family efforts in the days prior to death, and engendered anticipation of remaining quality time with the patient. Discussions about hospice or palliative care have meaning, emotional impact, practical effects, and unintended consequences for next-of-kin. Social workers in hospital settings can play a critical role in supporting family members through the hospice and palliative care discussion process and facilitate timely care transitions. They also can attend to the psychosocial concerns of family members, particularly when death occurs prior to discharge to hospice or transfer to an inpatient palliative care service.

Intervention to improve care at life's end in inpatient settings: the BEACON trial.

BACKGROUND: Widespread implementation of palliative care treatment plans could reduce suffering in the last days of life by adopting best practices of traditionally home-based hospice care in inpatient settings. OBJECTIVE: To evaluate the effectiveness of a multi-modal intervention strategy to improve processes of end-of-life care in inpatient settings. DESIGN: Implementation trial with an intervention staggered across hospitals using a multiple-baseline, stepped wedge design. PARTICIPANTS: Six Veterans Affairs Medical Centers (VAMCs). INTERVENTION: Staff training was targeted to all hospital providers and focused on identifying actively dying patients and implementing best practices from home-based hospice care, supported with an electronic order set and paper-based educational tools. MAIN MEASURES: Several processes of care were identified as quality endpoints for end-of-life care (last 7 days) and abstracted from electronic medical records of veterans who died before or after intervention (n = 6,066). Primary endpoints were proportion with an order for opioid pain medication at time of death, do-not-resuscitate order, location of death, nasogastric tube, intravenous line infusing, and physical restraints. Secondary endpoints were administration of opioids, order/administration of antipsychotics, benzodiazepines, and scopolamine (for death rattle); sublingual administration; advance directives; palliative care consultations; and pastoral care services. Generalized estimating equations were conducted adjusting for longitudinal trends. KEY RESULTS: Significant intervention effects were observed for orders for opioid pain medication (OR: 1.39), antipsychotic medications (OR: 1.98), benzodiazepines (OR: 1.39), death rattle medications (OR: 2.77), sublingual administration (OR: 4.12), nasogastric tubes (OR: 0.71), and advance directives (OR: 1.47). Intervention effects were not significant for location of death, do-not-resuscitate orders, intravenous lines, or restraints. CONCLUSIONS: This broadly targeted intervention strategy led to modest but statistically significant changes in several processes of care, indicating its potential for widespread dissemination to improve end-of-life care for thousands of patients who die each year in inpatient settings.

Formative evaluation of a multi-component, education-based intervention to improve processes of end-of-life care.

A multicomponent, palliative care, education-based intervention was implemented in six Veterans Affairs Medical Centers in the southeast United States. The intervention comprised onsite staff training plus supporting written materials, installation of an electronic order set, and follow-up consultations. Training included large-group didactic presentations, small-group clinical demonstrations, and one-on-one consultations. The intervention strategy was targeted broadly to hundreds of hospital providers, including physician, nursing, and ancillary staff. The purpose was to train staff in identifying actively dying patients and implementing best practices of home-based hospice care. A formative evaluation was conducted utilizing semistructured telephone interviews with key informants from each site. Qualitative data analysis revealed processes that facilitated or impeded uptake of the intervention. Results will be used to inform ongoing and future clinical initiatives and optimize future implementation of education-based interventions to improve adoption of best practices for end-of-life care within acute care settings.

A Report on the Innovative University of Colorado Community Hospice and Palliative Medicine Fellowship.

Background: Predictive health services modeling signals a shortage of board-certified Hospice and Palliative Medicine (HPM) physicians. Methods: This article introduces the Community Hospice and Palliative Medicine (CHPM) Fellowship, an Accreditation Council for Graduate Medical Education (ACGME) Advancing Innovation in Residency Education (AIRE) project designed to enable mid-career physicians (at least five years out from residency or fellowship) to achieve eligibility for board certification in HPM. Results: From 2020 to 2023, 24 fellows have completed or are currently participating in the CHPM fellowship which is evaluated using the Kirkpatrick model. Conclusion: This program shows promise in addressing the impending HPM workforce shortage by allowing physicians to complete a fellowship in their local communities.

"He got his last wishes": ways of knowing a loved one's end-of-life preferences and whether those preferences were honored.

As a patient approaches death, family members often are asked about their loved one's preferences regarding treatment at the end of life. Advance care directives may provide information for families and surrogate decision makers; however, less than one-third of Americans have completed such documents. As the U.S. population continues to age, many surrogate decision makers likely will rely on other means to discern or interpret a loved one's preferences. While many surrogates indicate that they have some knowledge of their loved one's preferences, how surrogates obtain such knowledge is not well understood. Additionally, although research indicates that the emotional burden of end-of-life decision making is diminished when surrogates have knowledge that a loved one's preferences are honored, it remains unclear how surrogates come to know these preferences were carried out. The current study examined the ways that next of kin knew veterans' end-of-life preferences, and their ways of knowing whether those preferences were honored in Veteran Affairs Medical Center (VAMC) inpatient settings.

Understanding the Relationships Between Health Care Providers' Moral Distress and Patients' Quality of Death.

Introduction: Moral distress is a commonly recognized phenomenon among health care providers; however, the experience of moral distress by staff caring for patients who die during an acute care hospital stay has not been previously examined. It also remains unclear how the quality of a death may impact moral distress among these providers. Objectives: We sought to understand levels of moral distress experienced by intern physicians and nurses who provided care during a patient's final 48 hours of life, and how the perceived quality of death impacted moral distress. Materials and Methods: We utilized a mixed-method prospective cohort design, surveying nurses and interns following inpatient hospital deaths at an academic safety-net hospital in the United States. Participants completed surveys and answered open-ended questions to evaluate moral distress and the quality of the patient's death. Results: A total of 126 surveys were sent to nurses and interns caring for 35 patients who died, with 46 surveys completed. Overall moderate-to-high levels of moral distress were identified among participants, and we found that higher levels of moral distress correlated with lower perceived quality of death. We identified five themes in our qualitative analysis highlighting the challenges nurses and interns face in end-of-life care, including the following: poor communication, unexpected deaths, patient suffering, resource limitations, and failure to prioritize a patient's wishes or best interests. Conclusions: Nurses and interns experience moderate-to-high levels of moral distress when caring for dying patients. Lower quality of end-of-life care is associated with higher levels of moral distress.

Mid-Career Training to Advance Palliative Care.

The demand for specialist palliative medicine physicians, advanced practice providers, and other team members outstrips supply. Traditional paths to specialty practice will not meet projected need. Therefore, innovation and research are required. One innovation is the training of midcareer professionals; those who have been in practice and want to change to palliative care. Barriers to leaving practice and returning to traditional training are high; not the least of which is the opportunity cost. In this roundtable, experts discuss what they have learned from current research, and point the way to additional needed research.

Disruptions in the organization of meal preparation and consumption among older cancer patients and their family caregivers.

OBJECTIVES: The purpose of this paper is to analyze the social organization of caring as gendered work as it relates to meal preparation and consumption activities surrounding older adult cancer patients and their caregivers. METHODS: Qualitative methods consisting of in-depth, semi-structured, face-to-face interviews with 30 older cancer patients (17 women and 13 men aged 68-90) and their caregivers were conducted separately. Participants were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancer. RESULTS: Major findings were that both patients and caregivers experienced distress surrounding food preparation and mealtime activities, and these varied according to the gender of both patients and caregivers and the relationship that existed between patients and caregivers. Of particular note, female patients experienced distress over not being able to fully participate in meal planning and cooking activities that were central to their self-identity. Related to this, male spouses experienced frustration over not being able to engage in cooking activities that met their wives' expectations. Female caregivers expressed tremendous discontent that the one they were caring for did not eat like they 'should'. DISCUSSION: Matters related to the organization of meals and food consumption activities may be a source of significant distress for patients and caregivers. Further research and greater attention from health care providers are warranted to evaluate the extent of such distress.

"Online Training Is Great but Human Interaction Is Better": Training Preferences of VA Interdisciplinary Palliative Care Consult Teams.

A growing body of research has examined modalities for delivering palliative care education; however, we know little about education and training preferences of VA interdisciplinary Palliative Care Consult Teams (PCCT). In the BEACON II study, we explored training preferences of PCCTs from 46 Veterans Affairs Medical Centers (VAMCs) participating in either a multisite webinar or a small group, in-person workshop. We interviewed participants by telephone seven to eight month post-training. In all, 75.9% preferred in-person education and training, including 78.9% of workshop participants and 73.1% of webinar participants. Respondents described in-person training as fostering learning through the following processes: (1) active engagement and focus, (2) interaction and networking, (3) meaning-making and relevance, and (4) reciprocity and commitment. Although it is not possible for Web-based palliative care education programs to replicate all aspects of the in-person learning experience, building experiential, interactive, meaningful, and reciprocal components into Web-based education may help shift preferences and make interdisciplinary team-based palliative care education accessible to a larger audience.

Community-Based Conversations about Advance Care Planning for Underserved Populations Using Lay Patient Navigators.

Background: Widespread community engagement in advance care planning (ACP) is needed to overcome barriers to ACP implementation. Objective: Develop, implement, and evaluate a model for community-based ACP in rural populations with low English language fluency and health care access using lay patient navigators. Design: A statewide initiative to improve ACP setting/subjects-trained in a group session approach, bilingual patient navigators facilitated 1-hour English and Spanish ACP sessions discussing concerns about choosing a surrogate decision maker and completing an advance directive (AD). Participants received bilingual informational materials, including Frequently Asked Questions, an AD in English or Spanish, and Goal Setting worksheet. Measurement: Participants completed a program evaluation and 4-item ACP Engagement Survey (ACP-4) postsession. Results: For 18 months, 74 ACP sessions engaged 1034 participants in urban, rural, and frontier areas of the state; 39% were ethnically diverse, 69% female. A nurse or physician co-facilitated 49% of sessions. Forty-seven percent of participants completed an ACP-4 with 29% planning to name a decision maker in the next 6 months and 21% in the next 30 days; 31% were ready to complete an AD in the next 6 months and 22% in the next 30 days. Evaluations showed 98% were satisfied with sessions. Thematic analysis of interviews with facilitators highlighted barriers to delivering an ACP community-based initiative, strategies used to build community buy-in and engagement, and ways success was measured. Conclusion: Patient navigators effectively engaged underserved and ethnically diverse rural populations in community-based settings. This model can be adapted to improve ACP in other underserved populations.

Interprofessional Master of Science in Palliative Care: On Becoming a Palliative Care Community Specialist.

Background: Palliative care (PC) is a limited resource in health care systems. Many providers develop a PC interest later in their careers when it is difficult to relocate and compete for a limited number of training positions. In communities without an academic tertiary medical center, interprofessional PC community specialists are poised to deliver high-quality accessible PC to patients/families with needs beyond what can be addressed by primary care providers. Objective: An interprofessional 36-credit Master of Science in Palliative Care (MSPC) provides evidence-based education to nurses, pharmacists, physicians, physician assistants, social workers, spiritual care providers, psychologists, counselors, and other allied health professionals. Design: The predominantly online curriculum, designed and taught by an interprofessional faculty, focuses on interdisciplinary teamwork, communication skills, and practical application of biomedical and psycho-sociocultural-spiritual-ethics content. The pedagogy is narrative based, emulating in-person clinical experiences, with patient cases progressing throughout the curriculum. We have enrolled four student cohorts. Measurements: Student self-assessments pre-mid-post program. Results: Students highly rate curriculum with demonstrated application of knowledge in case integration assignments, simulations with standardized patients, and Capstone Projects. Students' self-assessed skills on a 39-item scale increased on average to the highest level of 5 (able to perform independently and teach others). Conclusions: The inaugural student cohort reports high levels of engagement and satisfaction, including mastery and synthesis of didactic and experiential content through case integration projects. Students who worked in PC/hospice settings have advanced in their professions; others have transitioned to PC work. The MSPC has capacity to meet projected PC workforce gaps.

The contribution of social factors to undereating in older adults with cancer.

Inadequate nutrient intake is common in cancer patients and is associated with poor outcomes. Social factors may contribute to inadequate nutrient intake, although they have not been studied. The purpose of this study was to investigate social factors that may contribute to undereating in older adults with cancer. Participants included 30 patients, 17 women and 13 men, aged 70-99 years, who were diagnosed with pancreatic, colon, breast, lymphoma, skin, and head and neck cancers. Both participants and caregivers interpreted weight loss as a positive health outcome of cancer. Furthermore, some patients who had lost weight worked to keep the weight off by going on special diets. Patients and caregivers imbued certain foods with health-promoting qualities without corroborating scientific evidence. Cancer- and treatment-related alterations in self-identity due to changes in their bodies, in taste, and in the manner in which they must eat caused cancer patients to experience frustration and embarrassment, which led to reduced nutritional intake. Despite their compromised nutritional status, patients did not discuss food and eating habits with their physicians. Behaviors and attitudes of patients and caregivers may lead to negative changes in eating behaviors beyond the cancer itself or its treatment or sequelae. Many of these behaviors are potentially modifiable with appropriate education, communication, and intervention.

Palliative care intervention for choice and use of opioids in the last hours of life.

BACKGROUND: The purpose of this study was to evaluate the effects of a multicomponent palliative care intervention on choice and use of opioid pain medications for symptom control for patients dying in an acute care inpatient setting. METHODS: A preintervention/postintervention trial was conducted between 2001 and 2003. Participants were physician, nursing, and ancillary staff of inpatient services of an urban, tertiary care Veterans Affairs (VA) Medical Center. The intervention included staff education to better identify actively dying patients and a Comfort Care Order Set to guide care in the last hours of life. Data abstracted from computerized medical records of 191 veterans who died during a 6-month period before (N=98) and after (N=93) the intervention were used to examine changes in choice and amount of medication administered in the last 3 days of life. RESULTS: Findings show a significant increase in orders specifically for morphine from 47.4% to 81.7% (p<.001). Orders for hydromorphone or oxycodone did not increase significantly, and no patients had orders for meperidine or codeine. There was an increase in the administration of opioids from 16.7% to 73.0% of patients (p<.001). The amount of opioid administered (in oral morphine equivalents) increased from 31.9 mg/72 hours preintervention to 52.9 mg/72 hours postintervention (p=.12). CONCLUSIONS: The results indicate that the availability of morphine as a preferred opioid and the number of patients who received opioid medication during the last 3 days of life increased after introduction of the inpatient palliative care program.

A nationwide VA palliative care quality measure: the family assessment of treatment at the end of life.

OBJECTIVES: To evaluate the FATE (Family Assessment of Treatment at End of Life) Survey for use as a nationwide quality measure in the VA health care system. DESIGN: Nationwide telephone survey. SETTING: Five VA medical centers. PARTICIPANTS: Eligible patients received inpatient or outpatient care from a participating VA facility in the last month of life. One respondent/patient was selected using predefined eligibility criteria and invited to participate. MEASUREMENTS: The FATE survey consists of 32 items in 9 domains: Well-being and dignity (4 items), Information and communication (5 items), Respect for treatment preferences (2 items), Emotional and spiritual support (3 items), Management of symptoms (4 items), Choice of inpatient facility (1 item), Care around the time of death (6 items), Access to VA services (4 items), and Access to VA benefits after the patient's death (3 items). RESULTS: Interviews were completed with 309 respondents. The FATE showed excellent psychometric characteristics, with good homogeneity (e.g., Cronbach (alpha = 0.91) and no evidence of significant ceiling effects. The FATE also demonstrated good discriminant validity. For instance, FATE scores varied across facilities (range 44-72; Kruskal Wallis test p < 0.001). Patients who were seen by a palliative care service had better scores (mean 66 versus 52; rank sum test p < 0.001), as did patients who were referred to hospice (67 versus 49; rank sum test p < 0.001). CONCLUSIONS: The FATE survey offers an important source of quality data that can be used to improve the end-of-life care of all veterans, regardless of the type of care they receive or their site of death.

What about the trach? Tracheotomy removal as a palliative care maneuver.

Tracheotomy is performed on patients with airway obstruction or prolonged mechanical ventilation. Tracheotomy patients are increasingly being referred to hospice and palliative care. This case series describes a process for evaluating the ongoing need for tracheotomy and the impact of tracheotomy removal. A retrospective cohort design was used in which charts were reviewed of all tracheotomy patients referred to the palliative care unit between November 1, 1998, and July 31, 2001. Tracheotomy was present in 13 of 791 palliative care unit admissions. Persistent airway obstruction contraindicated tracheotomy removal in 5 patients. The remaining patients had a successful "button" trial with subsequent tracheotomy removal. They incurred no complications and exhibited improved functional status and decreased symptom burden. Tracheotomy removal is safe and beneficial in this patient subset and should be considered an alternative to prolonged tracheotomy.