Identifying Variation in Physical Health Behaviors and Depressive Symptoms among Religiosity Clusters of African American Adults in the United States.

Religiosity is an important factor in the lives of many African Americans, who suffer a greater health burden than their White counterparts. In this study, we examined associations between dimensions of religiosity with health behaviors and depressive symptoms in a sample of African American adults in the United States. Participants (N = 2086) completed five measures of religiosity (religious involvement, positive and negative religious coping, scriptural influence, belief in illness as punishment for sin) and measures of several health behaviors, cancer screening behaviors, and depressive symptoms. Using cluster analysis to examine the deep structure of religiosity, three clusters emerged: Positive Religious, Negative Religious, and Low Religious. In general, the Positive Religious group engaged in more healthy behaviors (e.g., fruit and vegetable consumption, fecal occult blood test) and fewer risky health behaviors (e.g., smoke and consume alcohol), and reported fewer depressive symptoms than did the Negative Religious and/or Low Religious groups. Theoretical implications and implications for interventions by clergy and mental health professionals are discussed.

Exploring how military culture shapes veterans' perception of aortic aneurysm repair: A qualitative study.

BACKGROUND: Veterans represent a distinct cultural group whose perceptions of illness and treatment are influenced by military culture. The study explores how prior military service shapes Veterans' assumptions and behaviors in the setting of aneurysm repair surgery. STUDY DESIGN: We conducted content and thematic analysis of a case series of 10 transcripts from telephone interviews with older (76.7 ± 4.3 years) African American and White male Veterans now residing in the Southern U.S. who underwent open or endovascular aneurysm surgery at Veterans Affairs Medical Centers or university affiliates between 2004 and2019. RESULTS: Throughout the continuum of care, Veterans described deferring to authority and not questioning provider's decisions ["I just can't make a judgment on that, because I'm not a doctor"]. Veterans valued commitment and articulated pride in keeping logistically challenging surveillance appointments [I always took them very seriously. . . If I'm scheduled for something by the doctor, I always make it."]. The routine structure of VA care aligned with Veterans military experiences, facilitating compliance with doctor's orders. However, procedural deviations in VA care were disconcerting for patients ["They haven't reached out to me in at least three years, since my surgery; I was being seen once a year and then all of a sudden, they just quit."]. While Veterans praised VA care, they exhibited sensitivity to signs of untoward treatment from clinical and support staff "…my surgeon, he never talked to me before, nor after, no anytime…I thought that maybe that wasn't right". CONCLUSIONS: Military culture embodies rank, order, and respect, and remains a source of strength and stability for Veterans in their medical care late in life. Cultural competency about how military service has shaped Veterans' expectations can enhance providers' awareness of patients' military mindsets and inform surgeons' efforts to engage Veterans in shared decision making.

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.

"It's important to me": A qualitative analysis on shared decision-making and patient preferences in older adults with early-stage breast cancer.

OBJECTIVE: Shared decision-making (SDM) occurs when physicians and patients jointly select treatment that aligns with patient care goals. Incorporating patient preferences into the decision-making process is integral to successful decision-making. This study explores factors influencing treatment selection in older patients with early-stage breast cancer (EBC). METHODS: This qualitative study included women age ≥65 years with EBC. To understand role preferences, patients completed the Control Preferences Scale. Semi-structured interviews were conducted to explore patients' treatment selection rationale. Interview transcripts were analyzed using a constant comparative method identifying major themes related to treatment selection. RESULTS: Of 33 patients, the majority (48%) desired shared responsibility in treatment decision-making. Interviews revealed that EBC treatment incorporated three domains: Intrinsic and extrinsic influences, clinical characteristics, and patient values. Patients considered 19 treatment selection themes, the most prioritized including physician trust and physical side effects. CONCLUSIONS: Because preferences and approach to treatment selection varied widely in this sample of older, EBC patients, more research is needed to determine best practices for preference incorporation to optimize SDM at the time of treatment decisions.

Should we be talking about guidelines with patients? A qualitative analysis in metastatic breast cancer.

BACKGROUND: Little data exist on perceptions of guideline-based care in oncology. This qualitative analysis describes patients' and oncologists' views on the value of guideline-based care as well as discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. PATIENTS AND METHODS: In-person interviews completed with MBC patients and community oncologists and focus groups with academic oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. Most patients were unfamiliar with the term "guidelines." All patients desired to know if they were receiving guideline-discordant treatment but were often willing to accept this treatment. Five themes emerged explaining this including trusting the oncologist, relying on the oncologist's experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions regarding the importance of guidelines revealed three themes: consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified three major limitations in using guidelines: lack of consensus, inability to "think outside the box" to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, it was often not considered a priority. CONCLUSIONS: Patients expressed a desire to know whether they were receiving guideline-based care but were amenable to guideline-discordant treatment if the rationale was made clear. Providers' preference to limit discussions of guidelines is discordant with patients' desire for this information and may limit shared decision-making.

"I'd Want to Know, Because a Year's Not a Long Time to Prepare for a Death": Role of Prognostic Information in Shared Decision Making among Women with Metastatic Breast Cancer.

Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes. Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.

Trust but Verify: Exploring the Role of Treatment-Related Information and Patient-Physician Trust in Shared Decision Making Among Patients with Metastatic Breast Cancer.

An ideal model for decision making in cancer is shared decision-making (SDM). Primary facilitators in this model are information-seeking about treatment options and patient-physician trust. Previous studies have investigated the role of each of these parameters individually. However, little is known about their convergent role in treatment decision-making. Therefore, we explored perspectives of metastatic breast cancer (MBC) patients and healthcare professionals about the influence of health information-seeking and physician trust in the SDM process. Qualitative interviews with 20 MBC patients and 6 community oncologists, as well as 3 separate focus groups involving lay navigators, nurses, and academic oncologists, were conducted, recorded, and transcribed. Qualitative data analysis employed a content analysis approach, which included a constant comparative method to generate themes from the transcribed textual data. Five emergent themes were identified (1) physicians considered themselves as the patients' primary source of treatment information; (2) patients trusted their physician's treatment recommendations; (3) patients varied in their approach to seeking further health information regarding the discussed treatment options (e.g., internet websites, family and friends, support groups); (4) other healthcare professionals were cognizant of their fundamental role in facilitating further information-seeking; and (5) patient and physician discordant perspectives on shared decision making were present. Patient procurement of treatment information and the capacity to use it effectively in conjunction with patient trust in physicians play an important role in the shared decision-making process.

What Is Important When Making Treatment Decisions in Metastatic Breast Cancer? A Qualitative Analysis of Decision-Making in Patients and Oncologists.

BACKGROUND: Metastatic breast cancer (MBC) is an ideal environment for shared decision-making because of the large number of guideline-based treatment options with similar efficacy but different toxicity profiles. This qualitative analysis describes patient and provider factors that influence decision-making in treatment of MBC. MATERIALS AND METHODS: Patients and community oncologists completed in-person interviews. Academic medical oncologists participated in focus groups. Interviews and focus groups were audio-recorded, transcribed, and analyzed using NVivo. Using an a priori model based on the Ottawa Framework, two independent coders analyzed transcripts using a constant comparative method. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 patients with MBC, 6 community oncologists, and 5 academic oncologists. Analysis of patient interviews revealed a decision-making process characterized by the following themes: decision-making style, contextual factors, and preferences. Patient preference subthemes include treatment efficacy, physical side effects of treatment, emotional side effects of treatment, cognitive side effects of treatment, cost and financial toxicity, salience of cutting-edge treatment options (clinical trial or newly approved medication), treatment logistics and convenience, personal and family responsibilities, treatment impact on daily activities, participation in self-defining endeavors, attending important events, and pursuing important goals. Physician decisions emphasized drug-specific characteristics (treatment efficacy, side effects, cost) rather than patient preferences, which might impact treatment choice. CONCLUSION: Although both patients with MBC and oncologists considered treatment characteristics when making decisions, patients' considerations were broader than oncologists', incorporating contextual factors such as the innovative value of the treatment and life responsibilities. Differences in perspectives between patients and oncologists suggests the value of tools to facilitate systematic communication of preferences in the setting of MBC. IMPLICATIONS FOR PRACTICE: Both patients with metastatic breast cancer (MBC) and oncologists emphasized importance of efficacy and physical side effects when making treatment decisions. However, other patient considerations for making treatment decisions were broader, incorporating contextual factors such as the logistics of treatments, personal and family responsibilities, and ability to attend important events. Furthermore, individual patients varied substantially in priorities that they want considered in treatment decisions. Differences in perspectives between patients and oncologists suggest the value of tools to facilitate systematic elicitation of preferences and communication of those preferences to oncologists for integration into decision-making in MBC.

Sudden Advanced Illness: An Emerging Concept Among Palliative Care and Surgical Critical Care Physicians.

BACKGROUND: End-of-life discussions in critically-ill patients with acute surgical conditions may be rushed and occur earlier during hospitalization. This study explores the concept of sudden advanced illness (SAI) and its relevance to patients requiring Palliative and Surgical Critical Care. METHODS: Semi-structured interviews were completed with 16 physicians, querying each about (1) definitional components, (2) illustrative cases, and (3) comfort with SAI. Analysis was done by grounded theory. RESULTS: SAI was characterized as unforeseen, emerging abruptly and producing devastating injury, often in healthy, younger patients. There is (1) prognostic uncertainty, (2) loss of capacity, and (3) unprepared surrogate decision-making. Cases are emotionally-charged and often personal. CONCLUSION: The emerging concept of SAI is important for understanding how Palliative Care can enhance care for this subset of patients.

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.

Surgeons' attitudes and practices in the utilization of palliative and supportive care services for patients with a sudden advanced illness.

BACKGROUND: There is growing interest in the interface between palliative care and other medical specialties, yet little is known about decision-making processes characterizing such collaborations. At the University of Alabama at Birmingham (UAB), the trauma-burn surgery and neurosurgery services frequently request consults from the palliative care team for patients with a sudden advanced illness from catastrophic injuries or physiologic insult. OBJECTIVE: We explored surgeons' attitudes and decision-making practices regarding utilization of palliative and supportive care for patients with a sudden advanced illness from traumatic injury or physiologic insult at UAB Hospital, an American College of Surgeons certified level 1 trauma center. DESIGN AND ANALYSIS: We conducted face-to-face, open-ended interviews with nine attending trauma-burn surgeons and neurosurgeons at UAB, utilizing a grounded theory approach to discover salient themes in surgeons' accounts of the palliative care consultative process. Surgeons' descriptions of exemplary cases provided the context for elucidating the larger dynamic involved in assessing patients' situations and identifying the need for palliative and supportive care services. RESULTS: We organized the data using decision-making diagrams, identifying multiple pathways within the larger consultative framework. Although case-based responses exhibited variations in surgeons diagnostic or prognostic criteria, patient's location in the illness/injury trajectory, and surgeon's goals/desired outcomes; a general decision-making pathway emerged. CONCLUSIONS: Through collaboration with the palliative care service at UAB, trauma-burn surgeons and neurosurgeons are better equipped to manage the multidimensional nature of suffering and provide a holistic approach to care for patients and families dealing with a sudden advanced illness.

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.

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.

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.

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.

The Balm of Gilead Project: a demonstration project on end-of-life care for safety-net populations.

The Balm of Gilead is a comprehensive program of end-of-life care for the populations served by the "safety net" public health system in Alabama's largest county. The Balm of Gilead serves terminally ill persons, predominantly of minority ethnic status who as a group are relatively younger than the national hospice population, and typically lacking in personal financial resources. Care provided by the Balm of Gilead addresses the holistic needs associated with terminal illness in each of its stages and each of its treatment settings. Balm of Gilead professionals and volunteers provide continuity of care across a continuum that includes inpatient palliative care, home hospice services, and specialized palliative care in nursing homes and other community residential settings. Cooper Green Hospital and the Jefferson County Department of Health are principal partners in the program. Community partnerships with local foundations, colleges and universities, faith communities, civic groups, and professional groups complete the collaborative network of the Balm of Gilead Project. This report discusses work to date toward fulfilling the project's two primary objectives: (1) to build the infrastructure necessary to support a comprehensive palliative care program that is available to county residents regardless of their ability to pay and (2) to develop systems and services to foster the institutional and community values that promote excellence in end-of-life care. The Project's current status and future challenges are reviewed.