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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 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.

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.

BACKGROUND: Understanding ethical concerns that arise in the care of patients with advanced kidney disease may help identify opportunities to support medical decision-making. OBJECTIVE: To describe the clinical contexts and types of ethical concerns that arise in the care of patients with advanced kidney disease. DESIGN: Retrospective cohort study. PARTICIPANTS: A total of 28,568 Veterans with advanced kidney disease between 2000 and 2009 followed through death or 2011. EXPOSURE: Clinical scenarios that prompted clinicians to consider an ethics consultation as documented in the medical record. MAIN MEASURES: Dialysis initiation, dialysis discontinuation, receipt of an intensive procedure during the final month of life, and hospice enrollment. KEY RESULTS: Patients had a mean age of 67.1 years, and the majority were male (98.5%) and white (59.0%). Clinicians considered an ethics consultation for 794 patients (2.5%) over a median follow-up period of 2.7 years. Ethical concerns involved code status (37.8%), dialysis (54.5%), other invasive treatments (40.6%), and noninvasive treatments (61.1%) and were related to conflicts between patients, their surrogates, and/or clinicians about treatment preferences (79.3%), who had authority to make healthcare decisions (65.9%), and meeting the care needs of patients versus obligations to others (10.6%). Among the 20,583 patients who died during follow-up, those for whom clinicians had considered an ethics consultation were less likely to have been treated with dialysis (47.6% versus 62.0%, adjusted odds ratio [aOR] 0.63, 95% CI 0.53–0.74), more likely to have discontinued dialysis (32.5% versus 20.9%, aOR 2.07, CI 1.61–2.66), and less likely to have received an intensive procedure in the last month of life (8.9% versus 18.9%, aOR 0.41, CI 0.32–0.54) compared with patients without documentation of clinicians having considered consultation. CONCLUSIONS: Clinicians considered an ethics consultation for patients with advanced kidney disease in situations of conflicting preferences regarding dialysis and other intensive treatments, especially when these treatments were not pursued. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-019-05466-w) contains supplementary material, which is available to authorized users.

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.

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.

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 ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-019-05538-x) contains supplementary material, which is available to authorized users.

BACKGROUND: Patients with transient ischemic attacks (TIA) are at high risk of subsequent vascular events. Hospitalization improves quality of care, yet admission rates for TIA patients vary considerably. OBJECTIVES: We sought to identify factors associated with the decision to admit patents with TIA. DESIGN: We conducted a secondary analysis of a prior study’s data including semi-structured interviews, administrative data, and chart review. PARTICIPANTS: We interviewed multidisciplinary clinical staff involved with TIA care. Administrative data included information for TIA patients in emergency departments or inpatient settings at VA medical centers (VAMCs) for fiscal years (FY) 2011 and 2014. Chart reviews were conducted on a subset of patients from 12 VAMCs in FY 2011. APPROACH: For the qualitative data, we focused on interviewees’ responses to the prompt: “Tell me what influences you in the decision to or not to admit TIA patients.” We used administrative data to identify admission rates and chart review data to identify ABCD(2) scores (a tool to classify stroke risk after TIA). KEY RESULTS: Providers’ decisions to admit TIA patients were related to uncertainty in several domains: lack of a facility TIA-specific policy, inconsistent use of ABCD(2) score, and concerns about facilities’ ability to complete a timely workup. There was a disconnect between staff perceptions about TIA admission and facility admission rates. According to chart review data, staff at facilities with higher admission rates in FY 2011 reported consistent reliance on ABCD(2) scores and related guidelines in admission decision-making. CONCLUSIONS: Many factors contributed to decisions regarding admitting a patient with TIA; however, clinicians’ uncertainty appeared to be a key driver. Further quality improvement interventions for TIA care should focus on facility adoption of TIA protocols to address uncertainty in TIA admission decision-making and to standardize timely evaluation of TIA patients and delivery of secondary prevention strategies.

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.

The use of physical restraints in dying patients may be a source of suffering and loss of dignity. Little is known about the prevalence or predictors for restraint use at end of life in the hospital setting.The objective was to determine the prevalence and predictors of physical restraint use at the time of death in hospitalized adults.Secondary analysis was performed on data from the "Best Practices for End-of-Life Care for Our Nation's Veterans" (BEACON) trial conducted between 2005 and 2011. Medical record data were abstracted from six Veterans Administration Medical Centers (VAMCs). Data on processes of care in the last seven days of life were abstracted from the medical records of 5476 who died in the six VAMCs. We prospectively identified potential risk factors for restraint use at the time of death from among the variables measured in the parent trial, including location of death, medications administered, nasogastric tube, intravenous (IV) fluids, family presence, and receipt of a palliative care consultation.Physical restraint use at time of death was documented in 890 decedents (16.3%). Restraint use varied by location of death, with patients in intensive settings being at higher risk. Restraint use was significantly more likely in patients with a nasogastric tube and those receiving IV fluids, benzodiazepines, or antipsychotics.This is the first study to document that one in six hospitalized veterans were restrained at the time of death and to identify predictors of restraint use. Further research is needed to identify intervention opportunities.

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.

Although hospice emergency kits (HEKs) are provided by many home hospice agencies, little is known about their use, side effects, and perceived impact.To evaluate HEK medication utilization, side effects, and impact as perceived by home hospice patients and their caregivers.We conducted a prospective longitudinal cohort study. Participants included 43 veterans and their family/caregivers referred to community home hospices with a Veterans Affairs (VA)-provided HEK. Measurements included patient/family reports based on weekly telephone interviews, electronic medical record (EMR) review, and after-death caregiver interviews.The HEK was used by 27 of 43 patients/caregivers (62.8%). In 11 cases, they reported using the kit on more than one occasion. The most commonly used medications were morphine concentrate (30.2% of patients), lorazepam (20.9%), and levofloxacin (16.3%). In 15 cases (34.9%), the family thought the HEK may have helped the patient stay at home. Nineteen of the 43 patients made at least one visit to the emergency department (ED) and 22 were hospitalized. Most admissions through the ED were due to uncontrolled pain and/or gastrointestinal problems, such as nausea or bowel obstruction. In after-death interviews, opinions of the HEK were uniformly positive. Respondents described the HEK's usefulness and felt supported and empowered by its presence in the home. Minor side effects were reported in four cases.Findings provide promising evidence that HEKs are a feasible and well-tolerated method for achieving timely relief of emergent symptoms in home hospice patients and possibly avoiding unwanted ED visits and hospitalizations.

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.

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.

Historically, death took place at home where family held vigil around the dying patient. Today, family presence is an important feature of death and dying in hospital settings. We used hermeneutic phenomenology to explore experiences of being present at the hospital death of a loved one. We conducted in-depth, face-to-face interviews with 78 recently bereaved next-of-kin of veterans who died in 6 Veterans Affairs (VA) Medical Centers in the Southeast United States. Two major themes emerged: 1) “ settling in,” characteristic of the experiences of wives and daughters in the initial phase of the patient's hospitalization; and 2) “ gathering around,” characteristic of the experiences of a wider array of family members as the patient neared death. An in-depth understanding of experiences of next-of-kin present at the hospital death of a loved one can increase staff awareness of family's needs and empower staff to develop policies and procedures for supporting family members.

Although the provision of hospice emergency kits (HEKs) by home hospice agencies is thought to be widespread, little is known about their use, safety, and impact.This study evaluated HEK medication utilization, safety, diversion, and perceived impact.Evaluation consisted of a retrospective patient chart abstraction and an anonymous questionnaire for home hospice nurses.Chart abstraction examined the computerized records of deceased veterans discharged to home hospice in 2009 (N=76). The questionnaire was completed by 78 home hospice nurses from 16 agencies.Chart abstraction examined HEK medication utilization, symptoms addressed, and safety/diversion concerns. The hospice nurse questionnaire assessed their perceptions of HEK utilization, safety, and impact, including efficacy for preventing emergency department (ED) visits and hospitalizations.Of patients who received an HEK, its use was documented in 50% of cases. The most used items were morphine concentrate and antibiotics. Nurses estimated that the HEK was utilized in 66.3% of cases, with the most frequently used medications being morphine, lorazepam, promethazine, and haloperidol. Fifty-nine percent of nurses felt HEKs were helpful 100% of the time (mean=84.2%; median=100% of the time) and 93% felt that an emergency department (ED) visit or hospitalization was avoided by having the kit in the home. Eighteen percent believed that medications in the kit are used by someone other than the patient.HEKs have value as a means to alleviate many symptoms that emerge predictably in home hospice patients and may avoid unwanted hospitalizations and ED visits.

Currently 28,000 Veterans die each year within Veterans Affairs Medical Centers. As Veterans age, the Department of Veterans Affairs faces a variety of issues, including the need for comprehensive end-of-life care. Appreciation of next of kin's assumptions regarding Veterans' care can inform the culture of end-of-life services in Veterans Affairs Medical Centers, contributing to the development of supportive practices aligned with next of kin's perspectives. This study explores next of kin's accounts of Veterans' hospital care during the last days of life to identify salient issues shaping perceptions of Veterans' care.

Racial differences exist for a number of health conditions, services, and outcomes, including end-of-life (EOL) care.The aim of the study was to examine differences in processes of care in the last 7 days of life between African American and white inpatients.Secondary analysis was conducted of data collected in the Best Practices for End-of-Life Care for Our Nation's Veterans (BEACON) trial (conducted 2005-2011). Subjects were 4891 inpatient decedents in six Veterans Administration Medical Centers. Data were abstracted from decedents' medical records. Multi-variable analyses were conducted to examine the relationship between race and each of 18 EOL processes of care controlling for patient characteristics, study site, year of death, and whether the observation was pre- or post-intervention.The sample consisted of 1690 African American patients (34.6%) and 3201 white patients (65.4%). African Americans were less likely to have: do not resuscitate (DNR) orders (odds ratio [OR]: 0.67; p = 0.004), advance directives (OR: 0.71; p = 0.023), active opioid orders (OR: 0.64, p = 0.0008), opioid medications administered (OR: 0.61, p = 0.004), benzodiazepine orders (OR: 0.68, p 0.0001), benzodiazepines administered (OR: 0.61, p 0.0001), antipsychotics administered (OR: 0.73, p = 0.004), and steroids administered (OR: 0.76, p = 0.020). Racial differences were not found for other processes of care, including palliative care consultation, pastoral care, antipsychotic and steroid orders, and location of death.Racial differences exist in some but not all aspects of EOL care. Further study is needed to understand the extent to which racial differences reflect different patient needs and preferences and whether interventions are needed to reduce disparities in patient/family education or access to quality EOL care.

In spite of ethical analyses assimilating the palliative deactivation of pacemakers to commonly accepted withdrawings of life-sustaining therapy, many clinicians remain ethically uncomfortable with pacemaker deactivation at the end of life. Various reasons have been posited for this discomfort. Some cardiologists have suggested that reluctance to deactivate pacemakers may stem from a sense that the pacemaker has become part of the patient's "self." The authors suggest that Daniel Sulmasy is correct to contend that any such identification of the pacemaker is misguided. The authors argue that clinicians uncomfortable with pacemaker deactivation are nevertheless correct to see it as incompatible with the traditional medical ethics of withdrawal of support. Traditional medical ethics is presently taken by many to sanction pacemaker deactivation when such deactivation honors the patient's right to refuse treatment. The authors suggest that the right to refuse treatment applies to treatments involving ongoing physician agency. This right cannot underwrite patient demands that physicians reverse the effects of treatments previously administered, in which ongoing physician agency is no longer implicated. The permanently indwelling pacemaker is best seen as such a treatment. As such, its deactivation in the pacemaker-dependent patient is best seen not as withdrawal of support but as active ending of life. That being the case, clinicians adhering to the usual ethical analysis of withdrawal of support are correct to be uncomfortable with pacemaker deactivation at the end of life.

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. Copyright © 2010 John Wiley & Sons, Ltd.

OBJECTIVES: To determine whether inpatient palliative consultation services improve outcomes of care. DESIGN: Retrospective telephone surveys conducted with family members of veterans who received inpatient or outpatient care from a Department of Veterans Affairs (VA) medical facility in the last month of life. SETTING: Five VA Medical Centers or their affiliated nursing homes and outpatient clinics. PARTICIPANTS: Veterans had received inpatient or outpatient care from a participating VA in the last month of life. One family member completed each survey. MEASUREMENTS: The telephone survey assessed nine aspects of the care the patient received in his or her last month of life: the patient's well-being and dignity (4 items), adequacy of communication (5 items), respect for treatment preferences (2 items), emotional and spiritual support (3 items), management of symptoms (4 items), access to the inpatient facility of choice (1 item), care around the time of death (6 items), access to home care services (4 items), and access to benefits and services after the patient's death (3 items). RESULTS: Interviews were completed with 524 respondents. In a multivariable linear regression model, after adjusting for the likelihood of receiving a palliative consultation (propensity score), palliative care patients had higher overall scores: 65 (95% confidence interval (CI)=62–66) versus 54 (95% CI=51–56; P

To identify aspects of end-of-life care in the U.S. Department of Veterans Affairs (VA) health care system that are not assessed by existing survey instruments and to identify issues that may be unique to veterans, telephone interviews using open-ended questions were conducted with family members of veterans who had received care from a VA facility in the last month of life. Responses were compared to validated end-of-life care assessment instruments in common use. The study took place in four VA medical centers and one family member per patient was invited to participate, selected from medical records using predefined eligibility criteria. These family members were asked to describe positive and negative aspects of the care the veteran received in the last month of life. Interview questions elicited perceptions of care both at VA sites and at non-VA sites. Family reports were coded and compared with items in five existing prospective and retrospective instruments that assess the quality of care that patients receive near the end of life. Interviews were completed with 66 family members and revealed 384 codes describing both positive and negative aspects of care during the last month of life. Almost half of these codes were not represented in any of the five reference instruments (n = 174; 45%). These codes, some of which are unique to the veteran population, were grouped into eight categories: information about VA benefits (n = 36; 55%), inpatient care (n = 36; 55%), access to care (n = 33; 50%), transitions in care (n = 32; 48%), care that the veteran received at the time of death (n = 31; 47%), home care (n = 26; 40%), health care facilities (n = 12; 18%), and mistakes and complications (n = 18; 27%). Although most of the reference instruments assessed some aspect of these categories, they did not fully capture the experiences described by our respondents. These data suggest that many aspects of veterans' end-of-life care that are important to their families are not assessed by existing survey instruments. VA efforts to evaluate end-of-life care for veterans should not only measure common aspects of care (e.g., pain management), but also examine performance in areas that are more specific to the veteran population.

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.Nationwide telephone survey.Five VA medical centers.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.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).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 p0.001). Patients who were seen by a palliative care service had better scores (mean 66 versus 52; rank sum test p0.001), as did patients who were referred to hospice (67 versus 49; rank sum test p0.001).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.

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.

The suffering that a person experiences at life's end is complex, difficult, and disheart ening. Pain and symptom control is often inadequate. It is not surprising that many express fear and dread of the death and dying process. Woody Allen's quip, "I am not afraid of dying. I just don't want to be there when it happens," sums up a common modern sentiment. People have not always felt this way. Ancient prayers, commonly recited well into the 20th century, petition a higher power to "protect us from dying suddenly and unprepared." The modern era, however, is characterized by the potential for a longer life expectancy, a prolonged period of increasing debility, and a protracted dying process that many have come to dread. In this issue of Medical Care, Rurup et al1 reported on the ongoing Dutch experiment with euthanasia and physician-assisted suicide (PAS). The practice has been permitted in the Netherlands since 1991, and in 2001 laws were enacted to provide legal security for physicians that meet "the requirement of due care." Although case-by-case permission to carry out euthanasia is not necessary in the Netherlands, a relatively simple process of physician documentation is required by law. The law mandates that at least one other physician see the patient, provide a consultation, and agree with the plan. It is not necessary that the patient be terminally ill or that the request for euthanasia be in writing. Once the decision has been made to provide physician-assisted death, a waiting period is not required.2 For this current study, physicians were surveyed about patient deaths. Since 1990, the same survey was administered to similar physician populations on 4 occasions. Survey data were linked to death certificates and a euthanasia database, the official reporting mechanism for physicians. The findings suggested steady improvement in adherence to guidelines for the practice of euthanasia. In 99% of reported cases, the correct method was used, suggesting that the process is safe and effective. Approximately 20% of cases of euthanasia were not reported, but only 14 cases were referred for review over a 4-year period. No referred cases resulted in prosecution. Some of the missing cases were attributable to a simple failure to follow reporting procedures. However, the bulk of underreporting to authorities was associated with the use of higher doses of benzodiaz epines, and seemed to stem from a misunderstanding on the part of physician about what is actually euthanasia versus palliative sedation. Such misunderstanding may be indicative of general confusion about nomenclature for end-of-life care. Euthanasia occurs when the physician administers medication to the patient with the intention of causing death. Euthanasia can be "voluntary" (the patient requests euthana sia), or "involuntary" (the patient does not make the request). In the case of involuntary euthanasia, patients may be incapacitated and unable to make end-of-life preferences known. In such cases, the physician may make a decision for euthanasia in consultation with surrogates or other clinicians using a best-interest determination. Physician-assisted

Objectives Gain an understanding of the prevalence of restraint use in dying patients. Understand what patient characteristics and care processes place a patient at greater risk for being restrained at time of death. Original Research Background: The use of physical restraints in dying patients should be limited to situations where patient death is unanticipated. Little is known about the prevalence or risk factors for restraint use at end of life. Research Objectives: To determine the prevalence and predictors of physical restraint use at the time of death in hospitalized adults. Design: conducted between 2005 and 2011. Setting/Participants: Data on the last seven days of life were abstracted from the medical records of 5,476 decedents from six Veterans Administration Medical Centers (VAMCs) in the southeast United States and from VA administrative databases. Methods: Based on literature and expert clinical opinion, we prospectively identified potential risk factors for restraint use at the time of death from among all variables collected during the trial. Factors included location of death, medications given, nasogastric tube, intravenous (IV) fluids infusing, family presence at time of death, and receipt of a palliative care consultation.

The purpose of this analysis was to describe the presence and timing of do-not-resuscitate (DNR) orders for imminently dying patients in VA Medical Centers, and to examine factors associated with these processes.Data on DNR orders in the last 7 days of life were abstracted from the medical records of 1,069 veterans who had died in one of six VA hospitals in 2005.Of the 1069 records, 681 (63.7%) had an active DNR order at time of death. Among these, records indicated that the order was written within the last 24 hours for 219 (32.2%), 1-2 days prior to death for 54 (7.9%), 3-7 days prior to death for 256 (37.6%), and7 days prior to death for 152 (22.3%). Veterans with a family member present at time of death and those who received pastoral care visits were more likely to have DNR orders. African American veterans and veterans who died unexpectedly were less likely to have DNR orders. Compared with those dying on a general medicine unit, veterans dying in the emergency department or an intensive care unit (ICU) and veterans dying during a procedure or in transit were less likely to have DNR orders. Mental health diagnoses were not associated with presence of a DNR order.Results suggest that the DNR process might be improved by interventions that target ICU settings, facilitate transitions to less intensive locations of care, ensure the involvement and availability of pastoral care staff, and create environments that support the presence of family members.

Most patients with serious and life-limiting illness experience pain at some point in the illness trajectory.To describe baseline pain management practices for imminently dying patients in Veterans Administration Medical Centers (VAMCs) and examine factors associated with these processes, including presence of opioid orders at the time of death and medication administration in the last seven days, 48 hours, and 24 hours of life.Data on orders and administration of opioid pain medication at the end of life were abstracted from the medical records of veterans who died in six VAMC hospitals in 2005.Of 1068 patient records, 686 (64.2%) had an active order for an opioid medication at the time of death. Of these, 69.8% of patients had received the medication at some time within the last seven days of life, 61.2% within the last 48 hours, and 47.0% within the last 24 hours. In multivariable models, presence of an order for opioid pain medication at the time of death and administration within the last 24 hours were both significantly associated with having a Do Not Resuscitate (DNR) order (P0.0001/0.0002), terminal condition (P0.0001/0.0001), family presence (P0.0001/0.0023), location of death (P = 0.003/0.0005), and having pain noted in the care plan (P = 0.0073/0.0007).Findings indicate a need for improving availability of opioids for end-of-life care in the inpatient setting. Modifiable factors, such as family presence and goals-of-care discussions, suggest potential targets for intervention to improve recognition of the dying process and proactive planning for pain control.

The Veterans Affairs (VA) has made significant investments in care for veterans. However, it is not known whether these investments have produced improvements in end-of-life care in the VA compared to other settings. Therefore, the goal of this study was to compare families' perceptions of end-of-life care among patients who died in VA and non-VA facilities.Retrospective 32-item telephone surveys were conducted with family members of patients who died in VA and non-VA facilities.Five Veterans Affairs medical centers and their affiliated nursing homes and outpatient clinics.Patients were eligible if they received any care from a participating VA facility in the last month of life and if they died in an inpatient setting. One family member per patient completed the survey.In bivariate analysis, patients who died in VA facilities (n = 520) had higher mean satisfaction scores compared to those who died in non-VA facilities (n = 89; 59 versus 51; rank sum test p = 0.002). After adjusting for medical center, the overall score was still significantly higher for those dying in the VA (beta = 0.07; confidence interval [CI] = 0.02-0.11; p = 0.004), as was the domain measuring care around the time of death (beta = 0.11; CI = 0.04-0.17; p = 0.001).Families of patients who died in VA facilities rated care as being better than did families of those who died in non-VA facilities. These results provide preliminary evidence that the VA's investment in end-of-life care has contributed to improvements in care in VA facilities compared to non-VA facilities.

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 ¼ 98) and after (N ¼ 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 ¼ .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.

After-death research with next-of-kin can enhance our understanding of end-of-life care and translate into better services for dying persons and their survivors. This article describes ethical and methodological issues that emerged in a pilot of a face-to-face interview guide designed to elicit next-of-kin's perceptions of end-of-life care. The pilot study was part of a larger Veterans Affairs (VA) Health Services Research protocol to improve end-of-life care in VA Medical Centers. By deconstructing the research process from an ethical perspective and engaging in critical self-assessment, the authors aim to inform other researchers of potential problems involved in after-death research with next-of-kin.

To determine whether inpatient palliative consultation services improve outcomes of care.Retrospective telephone surveys conducted with family members of veterans who received inpatient or outpatient care from a Department of Veterans Affairs (VA) medical facility in the last month of life.Five VA Medical Centers or their affiliated nursing homes and outpatient clinics.Veterans had received inpatient or outpatient care from a participating VA in the last month of life. One family member completed each survey.The telephone survey assessed nine aspects of the care the patient received in his or her last month of life: the patient's well-being and dignity (4 items), adequacy of communication (5 items), respect for treatment preferences (2 items), emotional and spiritual support (3 items), management of symptoms (4 items), access to the inpatient facility of choice (1 item), care around the time of death (6 items), access to home care services (4 items), and access to benefits and services after the patient's death (3 items).Interviews were completed with 524 respondents. In a multivariable linear regression model, after adjusting for the likelihood of receiving a palliative consultation (propensity score), palliative care patients had higher overall scores: 65 (95% confidence interval (CI)=62-66) versus 54 (95% CI=51-56; P.001) and higher scores for almost all domains. Earlier consultations were independently associated with better overall scores (beta=0.003; P=.006), a difference that was attributable primarily to improvements in communication and emotional support.Palliative consultations improve outcomes of care, and earlier consultations may confer additional benefit.