Stacy Fischer

Focus Group Findings about the Influence of Culture on Communication Preferences in End‐of‐Life Care

AbstractBACKGROUND: Little guidance is available for health care providers who try to communicate with patients and their families in a culturally sensitive way about end-of-life care. OBJECTIVE: To explore the content and structure of end-of-life discussions that would optimize decision making by conducting focus groups with two diverse groups of patients that vary in ethnicity and socioeconomic status. DESIGN: Six focus groups were conducted; 3 included non-Hispanic white patients recruited from a University hospital (non-Hispanic white groups) and 3 included African-American patients recruited from a municipal hospital (African-American groups). A hypothetical scenario of a dying relative was used to explore preferences for the content and structure of communication. PARTICIPANTS: Thirty-six non-Hispanic white participants and 34 African-American participants. APPROACH: Content analysis of focus group transcripts. RESULTS: Non-Hispanic white participants were more exclusive when recommending family participants in end-of-life discussions while African-American participants preferred to include more family, friends and spiritual leaders. Requested content varied as non-Hispanic white participants desired more information about medical options and cost implications while African-American participants requested spiritually focused information. Underlying values also differed as non-Hispanic white participants expressed more concern with quality of life while African-American participants tended to value the protection of life at all costs. CONCLUSIONS: The groups differed broadly in their preferences for both the content and structure of end-of-life discussions and on the values that influence those preferences. Further research is necessary to help practitioners engage in culturally sensitive end-of-life discussions with patients and their families by considering varying preferences for the goals of end-of-life care communication.

Lack of Ethnic Differences in End-of-Life Care in the Veterans Health Administration

Although existing literature shows pervasive ethnic disparities in end-of-life care, this study sought to determine if there were ethnic differences in the processes of care related to the end of life in a cohort of hospitalized, seriously ill veterans. The medical records of 217 patients (13% African American, 68% white, 9% Hispanic White) were reviewed for documentation of end-of-life care (advance directive discussions, pain, symptom-directed plan, and do-not-resuscitate orders). Logistic regression modeling demonstrated no ethnic differences for the treatment of pain or a symptom-directed plan of care. African American patients were more likely to have a do-not-resuscitate order and advance directive discussion documented compared with white patients. In this equal access system, minority patients were at least as likely or more likely to have important aspects of end-of-life care addressed compared with white patients.

The Illness Experience of Undocumented Immigrants With End-stage Renal Disease

Importance The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients. Objective To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis. Design, Setting, and Participants A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants’ medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016. Main Outcomes and Measures Themes and subthemes from semistructured interviews. Results All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system. Conclusions and Relevance Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.

Caring about prognosis: a validation study of the caring criteria to identify hospitalized patients at high risk for death at 1 year.

BACKGROUND Identifying patients, at the time of hospital admission, who are at high risk for 1-year mortality is an ideal opportunity to introduce palliative interventions into the hospital care plan. The CARING (C = primary diagnosis of cancer, A = ≥ 2 admissions to the hospital for a chronic illness within the last year; R = resident in a nursing home; I = intensive care unit admission with multiorgan failure, NG = noncancer hospice guidelines [meeting ≥ 2 of the National Hospice and Palliative Care Organizations guidelines] criteria is a practical prognostic index developed and validated in the Veterans Administration hospital setting that identifies patients at high risk of death within 1 year, although its effectiveness in a broader patient population is unknown. OBJECTIVE To validate the CARING criteria in a university and safety-net hospital setting. DESIGN Retrospective observational cohort study. SETTING Inpatient. PATIENTS Adults admitted to medical and surgical inpatient services during the study period of July 2005 through August 2005. MEASUREMENTS Mortality at 1 year following the index hospitalization was the primary end point. The CARING criteria were abstracted from the chart using only medical data available at time of admission. RESULTS At total of 1064 patients were admitted during the study period. Primary diagnosis of cancer (odds ratio [OR) = 7.23 [4.45-11.75]), intensive care unit admission with multiple organ failure (OR = 6.97 [2.75-17.68]), >2 noncancer hospice guidelines (OR = 15.55 [7.28-33.23]), and age (OR = 1.60 [1.32-1.93]) were predictive of 1-year mortality (C statistic = 0.79). One-year survival was significantly lower for those who met ≥ 1 of the CARING criteria. CONCLUSIONS The CARING criteria are a practical prognostic tool validated in a broad inpatient population that can be utilized on hospital admission to estimate risk of death in 1 year, with the goal of identifying patients who may benefit most from incorporating palliative interventions into their hospital plan of care. Journal of Hospital Medicine 2013;8:696-701.

ADVANCE DIRECTIVE DISCUSSIONS DO NOT LEAD TO DEATH

Key senators announced on August 13th that the end of life provision would be dropped from the health care reform bill. Senator Charles Grassley was quoted saying that the provision would be dropped because of fears that it would be misinterpreted or implemented incorrectly. The provision to include Medicare funding for advance directive (AD) discussions between practitioners and patients roused active and, at times vitriolic, discussions on radio talk shows and social networking sites. However, the concept of ADs is based on America’s core ethical principle of autonomy. While Nancy Cruzan and Terri Schiavo brought national attention to the issue for a brief time, recent data suggest while only ~30% of adults have completed an AD(1–3), 93% of adults would like to discuss ADs with their physician.(4) The reality is that these conversations are time consuming, incompatible with 20 minute appointments, and are not billable. The health care reform bill would have allowed physician compensation for an AD discussion every five years, provided guidelines, and suggested a mechanism to track the quality of these discussions. The bill states (page 430), that an AD consultation could take place more frequently if there were a significant change in the patient’s health status. Those opposed to the end of life provision interpret this to mean that discussing ADs with one’s physician will hasten death. Between 2003 and 2005, we interviewed 464 patients at an index hospitalization and asked if anyone had discussed ADs with them. A concurrent chart review documented the presence or absence of completed ADs in the medical record (Do Not Resuscitate orders (the majority of which are written three days before death(5)), and other broader types of ADs (living will, Durable Power of Attorney, a form like Five Wishes)). To date, 123 (27%) of these patients have died. Using logistic regression, we found no association between having had an AD discussion or the presence of ADs in the medical record and death at one year or death over the complete follow up period after adjusting for age and disease severity (Table 1). While this study was not powered to detect small differences in mortality or risk of death, it does provide some data to inform the current national debate that favors honoring patient wishes to have AD discussions and confirming that there is no evidence that these discussions or completing an advance directive lead to harm. Table 1 No Significant Association between AD Discussions or ADs and Death and One Year or Death from 2003–2009

Healthcare professional education: A unique role for hospices

We sought to describe the educational experiences that hospices currently provide for students in health professions by using a national cross-sectional, Web-based survey of the National Hospice and Palliative Care Organization (NHPCO) and the Population-based Palliative Care Research Network (PoPCRN) hospice sites. Of the 75 responding sites, 71 (95 percent) participated in the education of health profession students, most commonly providing education for bachelor of science in nursing students (73 percent), associate’s degree nursing students (61 percent), master’s-level social work or counseling students (61 percent), registered nursing students (59 percent), medical students (58 percent), and medical residents (57 percent). Significant staff time was devoted to educating these students (averaging 11 to 30 hours/week), but less than 3 percent received any financial compensation. Therefore, we conclude that hospices provide a significant amount of uncompensated education. This conclusion provides a unique opportunity for hospices to collaborate with health-care educational institutions and to influence the work force of the future.

Qualitative Interviews Exploring Palliative Care Perspectives of Latinos on Dialysis

BACKGROUND AND OBJECTIVES Compared with non-Latino whites with advanced illness, Latinos are less likely to have an advance directive or to die with hospice services. To improve palliative care disparities, international ESRD guidelines call for increased research on culturally responsive communication of advance care planning (ACP). The objective of our study was to explore the preferences of Latino patients receiving dialysis regarding symptom management and ACP. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Qualitative study design using semistructured face-to-face interviews of 20 Latinos on hemodialysis between February and July of 2015. Data were analyzed using thematic analysis. RESULTS Four themes were identified: Avoiding harms of medication (fear of addiction and damage to bodies, effective distractions, reliance on traditional remedies, fatalism: the sense that ones illness is deserved punishment); barriers and facilitators to ACP: faith, family, and home (family group decision-making, family reluctance to have ACP conversations, flexible decision-making conversations at home with family, ACP conversations incorporating trust and linguistic congruency, family-first and faith-driven decisions); enhancing wellbeing day-to-day (supportive relationships, improved understanding of illness leads to adherence, recognizing new self-value, maintaining a positive outlook); and distressing aspects of living with their illness (dietary restriction is culturally isolating and challenging for families, logistic challenges and socioeconomic disadvantage compounded by health literacy and language barriers, required rapid adjustments to chronic illness, demanding dialysis schedule). CONCLUSIONS Latinos described unique cultural preferences such as avoidance of medications for symptom alleviation and a preference to have family group decision-making and ACP conversations at home. Understanding and integrating cultural values and preferences into palliative care offers the potential to improve disparities and achieve quality patient-centered care for Latinos with advanced illness.

Apoyo con Cariño (support with caring): RCT protocol to improve palliative care outcomes for Latinos with advanced medical illness

Latinos are more likely to experience uncontrolled pain, and institutional death, and are less likely to engage in advance care planning. Efforts to increase access to palliative care must maximize primary palliative care and community based models to meet the ever-growing need in a culturally sensitive and congruent manner. Patient navigator interventions are community-based, culturally tailored models of care that have been successfully implemented to improve disease prevention, early diagnosis, and treatment. We have developed a patient navigation intervention to improve palliative care outcomes for seriously ill Latinos. We describe the protocol for a National Institute of Nursing Research-funded randomized controlled trial designed to determine the effectiveness of the manualized patient navigator intervention. We aim to enroll 240 Latino adults with non-cancer, advanced medical illness from both urban and rural clinical sites. Participants will be randomized to the intervention group (five palliative care patient navigator visits plus bilingual educational materials) or control group (usual care plus bilingual educational materials). Outcomes include quality of life (Functional Assessment of Chronic Illness Therapy), advance care planning (Advance Care Planning Engagement survey), pain (Brief Pain Inventory), symptom management (Edmonton Symptom Assessment Scale-revised), hospice utilization, and cost and utilization of healthcare resources. This culturally tailored, evidence-based, theory-driven, innovative patient navigation intervention has significant potential to improve palliative care for Latinos, and facilitate health equity in palliative and end-of-life care.

Effect of Apoyo con Cariño (Support With Caring) Trial of a Patient Navigator Intervention to Improve Palliative Care Outcomes for Latino Adults With Advanced Cancer: A Randomized Clinical Trial

Importance Strategies to increase access to palliative care, particularly for racial/ethnic minorities, must maximize primary palliative care and community-based models to meet the ever-growing need in a culturally sensitive and congruent manner. Objective To investigate if a culturally tailored patient navigator intervention can improve palliative care outcomes for Latino adults with advanced cancer. Design, Setting, and Participants The Apoyo con Cariño (Support With Caring) randomized clinical trial was conducted from July 2012 to March 2016. The setting was clinics across the state of Colorado, including an academic National Cancer Institute–designated cancer center, community cancer clinics (urban and rural), and a safety-net cancer center. Participants were adults who self-identified as Latino and were being treated for advanced cancer. Intervention Culturally tailored patient navigator intervention. Main Outcomes and Measures Primary outcome measures were advance care planning in the medical record, the Brief Pain Inventory, and hospice use. Secondary outcome measures included the McGill Quality of Life Questionnaire (MQOL), hospice length of stay, and aggressiveness of care at the end of life. This study used an intent-to-treat design. Results In total, 223 Latino adults enrolled (mean [SD] age, 58.1 [13.6] years; 55.6% female) and were randomized to control (n = 111) or intervention (n = 112) groups. Intervention group patients were more likely to have a documented advance directive compared with control group patients (73 of 112 [65.2%] vs 40 of 111 [36.0%], P < .001). Both groups reported mild pain intensity (mean pain rating of 3 on a scale of 0-10). Intervention group patients had a mean (SD) reported change from baseline in the Brief Pain Inventory pain severity subscale score (range, 0-10) of 0.1 (2.6) vs 0.2 (2.7) in control group patients (P = .88) and a mean (SD) reported change from baseline in the Brief Pain Inventory pain interference subscale score of 0.1 (3.2) vs −0.2 (3.0) in control group patients (P = .66). Hospice use was similar in both groups. Secondary outcomes of overall MQOL score and aggressiveness of care at the end of life showed no significant differences between groups. The MQOL physical subscale showed a mean (SD) significant change from baseline of 1.4 (3.1) in the intervention group vs 0.1 (3.0) in the control group (P = .004). Conclusions and Relevance The intervention had mixed results. The intervention increased advance care planning and improved physical symptoms; however, it had no effect on pain management and hospice use or overall quality of life. Further research is needed to determine the role and scope of lay navigators in palliative care. Trial Registration ClinicalTrials.gov identifier: NCT01695382

Opioid use in gynecologic oncology in the age of the opioid epidemic: Part I - Effective opioid use across clinical settings, a society of gynecologic oncology evidence-based review

As the only oncologists that provide both medical and surgical oncologic care, gynecologic oncologists encounter an exceptionally broad range of indications for prescribing opioids, from management of acute post-operative pain to chronic cancer-related pain to end-of-life care. If we are to balance opioid efficacy, safety and accessibility for our patients, we must be intimately familiar with appropriate clinical use of opioids in a range of settings, and engage in the national conversation around opioid misuse and how associated regulations and legislation may impact us and our patients. This article examines the appropriate use of opioids across the range of clinical settings encountered in gynecologic oncology.