"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.

"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.

Expanding the notion of researcher distress: the cumulative effects of coding.

Qualitative researchers who explore the individual's experience of health, illness, death, and dying often experience emotional stress in their work. In this article, we describe the emotional stress we experienced while coding semistructured, after-death interviews conducted with 38 next of kin of deceased veterans. Coding sensitive topic data required an unexpected level of emotional labor, the impact of which has not been addressed in the literature. In writing this discussion article, we stepped back from our roles as interviewers/coders and reflected on how our work affected us individually and as a team, and how a sequence of exposures could exert a cumulative effect for researchers in such a dual role. Through this article, we hope to generate an expanded discourse on how qualitative inquiry impacts the emotional well-being of researchers.

Ethical capital: 'what's a poor man got to leave?'.

For those of little or no means, leaving one's mark through financial assets, social connections, and human investment is difficult. Using secondary analysis of transcripts from face-to-face interviews with 33 terminally-ill patients from an outpatient clinic at a public hospital serving the disadvantaged in the southern United States, we examine the legacy participants wish to leave behind. As part of this process, participants assess life circumstances to try and generate a legacy allowing them to remain personally relevant to loved ones after death. For the low-SES terminally ill persons in this study, the desire to leave a material legacy and the means to do so are not congruous. In the absence of economic resources to bequeath loved ones, participants describe their desire to leave loved ones some form of ethical currency to facilitate interactions with others and protect them against social marginalisation. We call this concept ethical capital. We then argue ethical capital is a way for disadvantaged people to find dignity and to affirm their lives.

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.

Using an empirical binomial hierarchical Bayesian model as an alternative to analyzing data from multisite studies.

This article explores the statistical methodologies used in demonstration and effectiveness studies when the treatments are applied across multiple settings. The importance of evaluating and how to evaluate these types of studies are discussed. As an alternative to standard methodology, the authors of this article offer an empirical binomial hierarchical Bayesian model as a way to effectively evaluate multisite studies. An application of using the Bayesian model in a real-world multisite study is given.

Improving processes of hospital care during the last hours of life.

BACKGROUND: Known for excellence in care in the last days and hours of life, hospice programs can help individuals have a "good death" and lead to higher family satisfaction with quality of care. Our objective was to evaluate the effectiveness of a multicomponent palliative care intervention based on the best practices of home hospice and designed to improve the quality of care provided for patients dying in an acute care inpatient setting. METHODS: This study was a before-after intervention trial conducted between 2001 and 2003. Participants included physician, nursing, and ancillary staff on inpatient services of an urban, tertiary care Veterans Affairs medical center. The palliative care intervention included staff education and support to identify patients who were actively dying and implement care plans guided by a comfort care order set template for the last days or hours of life. Data abstracted from computerized medical records of 203 veterans who died during a 6-month period before (n = 108) and after (n = 95) intervention were used to determine the impact of intervention on symptom documentation and 5 process of care indicators. RESULTS: There was a significant increase in the mean (SD) number of symptoms documented from 1.7 (2.1) to 4.4 (2.7) (P<.001), and the number of care plans increased from 0.4 (0.9) to 2.7 (2.3) (P<.001). Opioid medication availability increased from 57.1% to 83.2% (P<.001), and do-not-resuscitate orders increased from 61.9% to 85.1% (P<.001). There were nonsignificant changes in the proportion of deaths that occurred in intensive care units (P = .17) and in the use of nasogastric tubes (P = .40), and there was a significant increase in the use of restraints (P<.001). CONCLUSION: Our results indicate that end-of-life care improved after the introduction of the palliative care program.

"Don't get weak in your compassion": bereaved next of kin's suggestions for improving end-of-life care in Veterans Affairs Medical Centers.

OBJECTIVES: To analyze bereaved next of kin's suggestions for improving end-of-life (EOL) care in Veterans Affairs (VA) Medical Centers (VAMCs). DESIGN: Qualitative. SETTING: This study was part of a larger study testing the effectiveness of a multimodal intervention strategy to improve processes of EOL care in six southeast U.S. VAMCs (Best Practices for End-of-Life Care for Our Nation's Veterans-BEACON Trial). PARTICIPANTS: Bereaved next of kin (n = 78) of veterans who died between 2005 and 2010. MEASUREMENTS: Data addressing praise, criticism, and recommendations for enhancing EOL care were abstracted from semistructured interviews of next of kin and aggregated into a code labeled "Suggestions." Content analysis proceeded iteratively through data review, comparison, and negotiation of emergent themes and integration of all coauthors' insights and interpretations into the evolving interpretive scheme. RESULTS: Next of kin provided examples that resonated with their conceptions of quality EOL care. They also described distressing situations and perceptions of deficits in care. Major themes derived were compassionate care, good communication, support for family visits and privacy, and the need for death preparation and postdeath guidance. The fifth theme, unique to this study, was the salience of the relationship between the veterans and their families and the VA and the expectations this engendered in terms of dignity and honor. CONCLUSION: Interventions that support staff's ability to convey compassion, communicate information to families and other staff, listen to patients and families, prepare families for the individual's death, and provide consistent, coordinated information regarding after-death activities may optimize EOL hospital care for veterans.

Exploring the affective dimension of the life review process: Facilitators' interactional strategies for fostering personhood and social value among older adults with early dementia.

We employed an auto-ethnography approach to explore the affective dimension of life review sessions with community-dwelling older military veterans with minor cognitive impairment (MCI) and early dementia. Using researchers' analytic memos, we identified facilitators' interactional strategies that fostered the participant's sense of personal identity, dignity and social self-worth. Interaction among participant, caregiver, and facilitators evoked a range of emotional responses, offering a window into the affective world of MCI and early dementia. Positive emotional responses outnumbered negative emotional responses by a ratio of two-to-one in the life review sessions; however, negative emotions were more revelatory of current struggles with declines in health and function. Facilitators utilized two interactional strategies, in particular, to foster personhood and social value of participants: focusing on the participant and creating an empathic connection with the participant. Further work is needed to understand the role of emotions in research interactions and to examine the psychosocial mechanisms through which positive affect functions in promoting identity, personhood and social value among persons with MCI and early dementia.

Impact of a hospice emergency kit for veterans and their caregivers: a prospective cohort study.

BACKGROUND: Although hospice emergency kits (HEKs) are provided by many home hospice agencies, little is known about their use, side effects, and perceived impact. OBJECTIVE: To evaluate HEK medication utilization, side effects, and impact as perceived by home hospice patients and their caregivers. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

"A room full of chairs around his bed": being present at the death of a loved one in Veterans Affairs Medical Centers.

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.

Opioid pain medication orders and administration in the last days of life.

CONTEXT: Most patients with serious and life-limiting illness experience pain at some point in the illness trajectory. OBJECTIVES: 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. METHODS: 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. RESULTS: 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 (P < 0.0001/0.0002), terminal condition (P < 0.0001/< 0.0001), family presence (P < 0.0001/0.0023), location of death (P = 0.003/0.0005), and having pain noted in the care plan (P = 0.0073/0.0007). CONCLUSION: 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.

Effectiveness of Smoking Cessation and Reduction in Pregnancy Treatment (SCRIPT) methods in Medicaid-supported prenatal care: Trial III.

This two-phase evaluation documented the delivery and effectiveness of evidence-based health education methods by regular staff to pregnant smokers. During Phase 1, a total of 436 Medicaid patients were screened and 416 (95%) gave consent: 334 nonsmokers and 102 smokers. This historical Comparison (C) group was assessed to document the "normal" pretrial smoking prevalence, patient nondisclosure (deception), and cessation rates at the first prenatal visit and during care. After this study, a formative evaluation of SCRIPT methods was conducted among 139 experimental group patients and 126 control group patients. During Phase 2, a total of 6,514 patients were screened over a 36-month period: 1,736 (27%) were smokers and 1,340 (77%) gave consent. After randomization, 247 became ineligible. The remaining 1,093 smokers received brief routine advice to quit. The experimental group (n = 544) also received a Commit to Quit video, A Pregnant Woman's Guide to Quit Smoking, and counseling. Self-reports and saliva were collected at baseline, ≥60 days, and ≤90 days postpartum for cotinine analyses to document cessation and significant reduction (SR) rates. The Phase 1 formative evaluation documented a 24% nondisclosure rate at the onset of care. It also confirmed a significantly higher experimental (17.3%) versus control group (8.8%) cessation rate and experimental versus control group SR rates of 22% and 16%. During Phase 2, unplanned policy changes, and delivery of experimental group counseling procedures to 15% to 20% of control group patients, resulted in a final experimental group cessation rate of 12% and a control group rate of 10%. The experimental group SR rate of 18%, however, was significantly higher than the control group SR rate of 13%. Effectiveness varied by the stability of clinic infrastructure, and degree of fidelity of staff performance of assessment and intervention procedures. The methods and results of this study will assist future health education programs for pregnant smokers to plan and conduct process and impact evaluations in prenatal care.

The experience of older patients with cancer in phase 1 clinical trials: a qualitative case series.

This article explores the experiences of older patients with cancer in phase 1 clinical trials. Conducting a case series of face-to-face, in-depth, open-ended interviews and using qualitative methods of analysis, we find that the psychosocial process of social comparison is relevant for understanding older adults' phase 1 clinical trial participation. Social comparison influences decisions to enroll in a phase 1 clinical trial, shapes perceptions of supportive care needs, and encourages the utilization of hope. Additional research should develop strategies for addressing supportive care needs among this patient cohort whose use of social comparison can inhibit articulation of pain, suffering, and symptom burden as well as use of informal support systems.

Identifying and responding to ethical and methodological issues in after-death interviews with next-of-kin.

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.

Barriers to mobility during hospitalization from the perspectives of older patients and their nurses and physicians.

BACKGROUND: Low mobility is common during hospitalization and is associated with adverse outcomes. Understanding barriers to the maintenance or improvement of mobility is important to the development of successful interventions. OBJECTIVES: To identify barriers to mobility during hospitalization from the perspectives of older patients and their primary nurses and physicians, to compare and contrast the perceived barriers among these groups, and to make a conceptual model. DESIGN: Qualitative interviews analyzed and interpreted using a grounded theory approach. SETTING: Medical wards of a university hospital. PARTICIPANTS: Twenty-nine participants--10 patients >or= 75 years, 10 nurses, and 9 resident physicians. MEASUREMENTS: Participants were interviewed using a semistructured interview guide, with similar questions for patients and health care providers. Interviews were audiotaped, transcribed, and reviewed for common themes by independent reviewers. Perceived barriers to mobility were identified, and their nature and frequency were examined for each respondent group. RESULTS: Content analysis identified 31 perceived barriers to increased mobility during hospitalization. Barriers most frequently described by all 3 groups were: having symptoms (97%), especially weakness (59%), pain (55%), and fatigue (34%); having an intravenous line (69%) or urinary catheter (59%); and being concerned about falls (79%). Lack of staff to assist with out-of-bed activity was mentioned by patients (20%), nurses (70%), and physicians (67%). Unlike patients, health care providers attributed low mobility among hospitalized older adults to lack of patient motivation and lack of ambulatory devices. CONCLUSIONS: Recognizing and understanding perceived barriers to mobility during hospitalization of older patients is an important first step toward developing successful interventions to minimize low mobility.

Data collection in a multisite project: Teleform.

Data collection, entry, validation, and management are salient time- and resource-consuming dimensions of all research projects. This is especially true for multisite studies, which pose unique, additional challenges because of their research design requirements. To save time and reduce the number of manual data entry errors, automated processing systems are becoming more widely used. Our research team chose Teleform for data entry and collection for the Smoking Cessation or Reduction in Pregnancy Trial study. This article presents our experience with this new technology.