BACKGROUND: Opioid overdoses have reached epidemic levels in the United States and have clustered in Northeastern and "Rust Belt" states. Five Factor Model (FFM) personality traits also vary at the state level, with anger-prone traits clustered in the Northeast region. This study tested the hypothesis that state-level anger proneness would be associated with a greater increase in rates of opioid overdose death.
METHODS: This was a secondary analysis of state-level data on FFM traits, opioid overdose deaths, and other classes of preventable death. Robust mixed models tested whether change in rates of opioid overdose death from 2008 to 2016 was moderated by state-level anger proneness.
RESULTS: State-level anger proneness was significantly associated with greater increases in rates of opioid overdose deaths (B = 1.01, standard error = 0.19, P < .001, 95% confidence interval: 0.63-1.39). The slope of increase in opioid overdose death rates was 380% greater in anger-prone states and held after adjustment for potential confounders such as state-level prevalence of major depressive disorder, number of mental health facilities, and historical patterns of manufacturing decline. A similar pattern was observed between state-level anger proneness and benzodiazepine overdose deaths but was not significant for the latter after adjustment for potential confounders.
CONCLUSION: These findings suggest that states characterized as more anger prone have experienced greater increases in opioid overdose deaths.
Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers.
Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity.
Design: A cross-sectional study using an online survey.
Setting/Subjects: Home and residential hospice, inpatient palliative care service, and other inpatient and outpatient settings. Subjects were 865 hospice and palliative care providers, including physicians, social workers, nurses, and chaplains.
Measurements: Inadequate, disrespectful, or abusive care to LGBT patients and discriminatory treatment of family and surrogates were measured.
Results: Among respondents, 53.6% thought that lesbian, gay, or bisexual (LGB) patients were more likely than non-LGB patients to experience discrimination at their institution; 23.7% observed discriminatory care; 64.3% reported that transgender patients were more likely than nontransgender patients to experience discrimination; 21.3% observed discrimination to transgender patients; 15% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 14.3% observed the spouse/partner or surrogate being treated disrespectfully.
Conclusions: These findings provide strong evidence that LGBT patients and their families are more likely to receive discriminatory care as compared with those who are not LGBT. Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.
BACKGROUND: Clinicians need to deliver prognostic information to surrogates of nondecisional, critically ill patients so that surrogates can make informed medical decisions that reflect the patient's values. Our objective was to implement a new approach for communicating with surrogates of patients with chronic critical illness.
METHODS: Surrogate decision makers of patients who were difficult to liberate from mechanical ventilation were prospectively enrolled. Surrogates met with different members of the intensive care unit treatment team for sequential 15-minute appointments to receive patient-specific assessments and education on chronic critical illness. The feasibility and acceptability of this approach were determined. A 24-question comprehension instrument was developed to assess a participant's understanding that a family member was displaying features of chronic critical illness. Each question was scored from 1 to 5, with larger scores indicating greater comprehension.
RESULTS: Over a 15-week period, educational sessions for 9 mechanically ventilated patients were conducted. On average, 2 surrogates per patient (range: 1-4) and 6 members of the interdisciplinary team (range: 4-6) were at each meeting. Surrogates and clinicians had very positive impressions of the communication intervention. The average preintervention comprehension score was 85 of 120 (standard deviation [SD]: 8, range: 71-101). The postintervention comprehension score was greater by 5 points on average (SD: 9, range: -11 to +20 points, P = .04).
CONCLUSIONS: Surrogates of critically ill patients approved of this novel communication approach and had a greater understanding of the patient's medical condition after the intervention.
Introduction: Early palliative care (PC) integrated with oncology care improves quality of life (QOL), depression symptoms, illness understanding, and end-of-life (EOL) care for patients with advanced lung cancer. The aims of this trial are to compare the effect of delivering early integrated PC through telehealth versus in-person on patient and caregiver outcomes. We hypothesize that both modalities for delivering early PC would be equivalent for improving patient QOL, communication about EOL care preferences with their oncologist, and length of stay in hospice.
Methods: For this comparative effectiveness trial, we will enroll and randomize 1250 adult patients with advanced nonsmall cell lung cancer (NSCLC), who are not being treated with curative intent, to receive either early integrated telehealth or in-person PC at 20 cancer centers throughout the United States. Patients may also invite a family caregiver to participate in the study. Patients and their caregivers in both study groups meet at least every four weeks with a PC clinician from within 12 weeks of patient diagnosis of advanced NSCLC until death. Participants complete measures of QOL, mood, and quality of communication with oncologists at baseline before randomization and at 12, 24, 36, and 48 weeks. Information on health care utilization, including length of stay in hospice, will be collected from patients' health records. To test equivalence in outcomes between study groups, we will compute analysis of covariance and mixed linear models, controlling for baseline scores and study site.
Study Implementation and Stakeholder Engagement: To ensure that this comparative effectiveness trial and findings are as patient centered and meaningful as possible, we have incorporated a robust patient and stakeholder engagement plan. Our stakeholder partners include (1) patients/families, (2) PC clinicians, (3) telehealth experts and clinician users, (4) representatives from health care systems and medical insurance providers, and (5) health care policy makers and advocates. These stakeholders will inform and provide feedback about every phase of study implementation.
Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity.
Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life.
Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them.
Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability).
Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.
Palliative care is an interdisciplinary field that focuses on optimizing quality of life forpatients with serious, life-limiting illnesses. Palliative care includes aggressive management of pain and symptoms; psychological, social, and spiritual support; as well as discussions of advance care planning, which may include treatment decision making and complex care coordination.
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While shadowing is a relatively common practice in the education of many health professionals, it is not widely used in chaplaincy education. Findings from our qualitative study of 12 chaplains who participated in the Coleman Palliative Medicine Training Program suggest it may offer benefits for practicing chaplains. In interviews with seven fellows who shadowed more experienced palliative care (PC) chaplains and the five mentors who were shadowed at their work settings, participants reported opportunities for mutual learning, self-reflection, and collegiality. Fellows observed how members of a PC team collaborate and contribute equally to the care of patients. Mentors found shadowing was a rare opportunity to share their chaplaincy practice with colleagues. It helped them to appreciate different aspects of their work settings and to distinguish between PC and generalist chaplaincy. We discuss the challenges participants experienced while shadowing and offer recommendations for incorporating the practice more widely into chaplaincy education.
BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings.
OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects.
METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress.
RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021.
CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.
It is well accepted that attention to spiritual concerns is a core dimension of palliative care. It is similarly well accepted that chaplains are the spiritual care specialists who should address such concerns. However, what chaplains do when they provide care for patients and families is often poorly understood by their palliative care colleagues. Having a clear understanding of what chaplains do is important because it contributes to improved utilization of the spiritual care and other resources of the palliative care team and thereby to better care for patients and families. The aim of this study was to describe what palliative care physicians, nurses, and social workers understand about what chaplains do. Brief surveys were distributed to participants at 2 workshops for palliative care professionals in 2016. The survey was completed by 110 participants. The majority reported that they understood what chaplains do moderately well or very well. Thirty-three percent of the written comments about what chaplains do were very general; 25% were more specific. Only a small proportion of the participants were aware that chaplains provide care for the team, are involved in facilitating treatment decision-making, perform spiritual assessments, and bridge communication between the patient/family/team/community. Based on our survey, palliative care colleagues appear to have a broad understanding of what chaplains do but many may be unfamiliar with important contributions of chaplains to care for patients, families, and teams. These findings point to the need for ongoing education of palliative teams about what chaplains do in palliative care.
OBJECTIVES: This study investigated the use of opioid treatment plans that included the implementation of opioid dependence risk with a validated screening tool and opioid dependence risk tool (UDT) in a noncancer palliative pain clinic.
METHODS: We retrospectively reviewed the medical records for diagnostic information, information on analgesic medications, daily morphine equivalent dose, presence of pain management agreements and opioid dependence risk tools (ORT), and UDT. We recorded hospital days and emergency department visits.
RESULTS: Seventy-four patients were followed for a mean of 15.9 months. Ninety-three percent of patients had pain management agreements and 74% had ORT. The median score was 8: consistent with a high risk. More than half had UDT and 17.6% of patients had unexpected findings. Fifty-nine percent of patients had a psychiatric diagnosis. Hospital days and emergency department visits decreased by more than 30% ( P = .015 and P = .019). Significance of Findings: Both mental health problems and aberrant drug use were common in patients seen in a noncancer palliative care clinic. There were significant reductions in acute care utilization in the 12 months post intake in the clinic.
CONTEXT: Physician aid in dying is a controversial topic in the United States, and legislation exists in some states. Personality traits are associated with preferences for end of life care, and also tend to cluster systematically across states and other geographic regions. Such clustering of personality traits could relate to legislation including physician aid in dying.
OBJECTIVE: To determine whether average levels of personality traits in each U.S. state differ between states with and without physician aid in dying legislation.
METHODS: This secondary analysis of national surveys included data on state demographics, political leanings, and state level averages of Five Factor Model personality traits. Wilcoxon tests and logistic regression tests were used to assess whether state level averages in personality traits differed across states with and without physician aid in dying legislation.
RESULTS: States with death with dying legislation had significantly higher average levels of the trait of Openness, and significantly lower average levels of the trait of Neuroticism. The association with Openness was no longer significant after accounting for state conservative advantage.
CONCLUSION: The social dialogue and potential controversy surrounding physician aid in dying may be linked to aggregate differences in state personality profiles. States with physician aid in dying legislation tend to be areas where constituents are on average more open minded, and experience greater emotional stability. More work is needed to ascertain whether the experiences of receiving and providing end-of-life care may differ across these regions, particularly in relation to conversations around physician aid in dying.
Although several publications document the health care disparities experienced by sexual and gender minorities (SGMs), including lesbian, gay, bisexual, and transgender (LGBT) individuals,1e4 less is known about the experiences and outcomes for SGM families and individuals in hospice and palliative care (HPC) settings. This article provides a brief overview of issues pertaining to SGMs in HPC settings, highlighting gaps in knowledge and research. Current and best practices for SGM individuals and their families in HPC settings are described, as are recommendations for improving the quality of such care.
AIMS: Our primary aims were to assess growth in the local hospital based workforce, changes in the composition of the workforce and use of an interdisciplinary team, and sources of support for palliative medicine teams in hospitals participating in a regional palliative training program in Chicago.
METHODS: PC program directors and administrators at 16 sites were sent an electronic survey on institutional and PC program characteristics such as: hospital type, number of beds, PC staffing composition, PC programs offered, start-up years, PC service utilization and sources of financial support for fiscal years 2012 and 2014.
RESULTS: The median number of consultations reported for existing programs in 2012 was 345 (IQR 109 - 2168) compared with 840 (IQR 320 - 4268) in 2014. At the same time there were small increases in the overall team size from a median of 3.2 full time equivalent positions (FTE) in 2012 to 3.3 FTE in 2013, with a median increase of 0.4 (IQR 0-1.0). Discharge to hospice was more common than deaths in the acute care setting in hospitals with palliative medicine teams that included both social workers and advanced practice nurses ( p < .0001).
CONCLUSIONS: Given the shortage of palliative medicine specialist providers more emphasis should be placed on training other clinicians to provide primary level palliative care while addressing the need to hire sufficient workforce to care for seriously ill patients.
The purposes of this study were to describe the advance care planning process for nursing home residents and identify common concerns regarding advance care planning. We conducted a content analysis of video-conferenced advance care planning meetings in the nursing home. Fourteen nursing home residents and 10 family members were included in the analysis. Themes based on the participants' statements during the meetings were used to generate the Advance Care Planning Process Framework. The Advance Care Planning Process Framework has 3 primary phases: (1) assess resident's status regarding end-of-life care, which includes establishing common language; identifying resident's unrealistic goals and wishes; and identifying inconsistencies between resident's expressed wishes and the preferences documented in medical record; (2) negotiate realistic plan of care, which includes addressing inconsistencies between resident's and family's goals; rephrasing goals and wishes in hypothetical scenarios; and clarifying goals; and (3) create action plan, which includes complete advance directives and revisit/revise in the future as needed. Most of the consultations resulted in action plans to facilitate concordance between resident wishes and medical records. Advance care planning with palliative care specialists provided a valuable opportunity for nursing home residents and families to discuss advance directives and provided valuable clarification of their goals of care.
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care.
METHODS: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program.
RESULTS: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05).
CONCLUSION: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.