Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles.

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.

Perceptions of Palliative Care: Demographics and Health Status Among the General Population in Florida and the United States.

BACKGROUND: Palliative care (PC) helps maintain quality of life for seriously ill patients, yet, many Americans lack knowledge of PC. AIM: To explore the relationships between knowledge of PC of individuals living in north-central Florida and throughout the United States. DESIGN: This cross-sectional survey with three sampling approaches, one was a community-engaged sample and two were panel respondent samples. Respondents and setting: Respondents of the Florida sample (n1 = 329) and the community-engaged sample (n2 = 100), were representative of the 23 Florida county general population. Respondents of the national sample (n = 1800) were adult members of a panel owned by a cloud-based survey platform. RESULTS: Young adults compared with adults (OR 1.62, 95% CI 1.14-2.28, P .007), middle-adults (OR 2.47, 95% CI 1.58-3.92, P < .001) and older-adults (OR 3.75, 95% CI 2.50-5.67, P < .001) were less likely to agree that the goal of PC is to help friends and family cope with a patient's illness, and that the goal of PC is to manage pain and other physical symptoms compared with adults (OR 1.67, 95% CI 1.20-2.30, P .002) middle-adults (OR 2.58, 95% CI 1.71-3.95, P < .001) and older-adults (OR 7.19, 95% CI 4.68-11.2, P < .001). Participants with greater rural identity (OR 1.39, 95% CI 1.31-1.48, P < .001) were more likely to agree that accepting PC means giving up. CONCLUSIONS: Increased knowledge of PC might be influenced through targeting educational interventions and educating the general population through social media use.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

Cost considerations for implementing dignity therapy in palliative care: Insights and implications.

OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

Nursing Education for the Acute Care Nurse on Pain Mechanisms of Sickle Cell Disease.

Background It is unknown whether nurses' knowledge about pain among patients with sickle cell disease (SCD) reflects the current standard of care. The authors evaluated changes in nurses' knowledge and simulated practice behavior after a continuing education program. Method Inpatient nurses completed an e-learning program on SCD pain; a pretest and a posttest with the same 10 questions; and two patient cases with four pain intervention options at the posttest. Results On the pretest, the mean percentage of correct answers was 83% (SD = 13%). The mean percentage of correct answers increased by 12% (p < .0001) on the posttest. For the first simulated patient case, 100% (n = 31) of the nurses selected an appropriate pain intervention option based on the patient-reported pain score. For the second simulated patient case, 84% (n = 26) did so. Conclusion Increased knowledge does not always translate into simulated practice change. The reasons for this are unknown, but they could include implicit bias from exposure to patients who have high use of acute care, although the minority of patients with SCD fit this description. [J Contin Educ Nurs. 2022;53(3):137-144.].

Finishing Well: Compassionate Extracorporeal Membrane Oxygenation Discontinuation.

Extracorporeal Membrane Oxygenation (ECMO) is associated with significant mortality. Provision of high-quality end-of-life (EOL) care for patients supported on ECMO entails specific physiological, pharmacological, and technical considerations. Limited guidance exists for clinicians on delivery of optimal EOL care on ECMO. In this article, we review the unique aspects of EOL care as they apply to ECMO support and propose a pragmatic, interdisciplinary framework for compassionate ECMO discontinuation in children and adults. The goal of compassionate ECMO discontinuation (CED) is to allow natural death from the underlying disease process while delivering high-quality EOL care to ensure a good death experience for patients and their families. The CED approach includes: 1) a family meeting to define goal-concordant EOL care and prepare families and patients for the dying process; 2) clinical preparation, including symptom management and discontinuation of other life-sustaining therapies; 3) technical aspects which necessarily vary according to patient factors and the circuit and cannulation strategy; and 4) bereavement support. The proposed CED considerations and checklist may serve as tools aiding provision of comprehensive, quality, individualized patient- and family-centered care for children and adults dying despite ECMO support. A structured CED may enhance EOL experiences for patients, family, and staff by providing a respectful and dignified death experience. Future research is required to determine feasibility and effectiveness of the framework, which must be adapted to the patient and institutional setting.

Navigating the Doctor of Nursing Practice project within an academic practice partnership.

ABSTRACT: The Doctor of Nursing Practice (DNP) curriculum was initially developed in 2004. The DNP degree is a practice doctorate, which educates nurses to the highest level of clinical nursing practice. DNP students must complete a scholarly project in accordance with the American Association of Colleges of Nursing (AACN) guidelines. The project is an opportunity for the student to integrate skills into practice and demonstrate principles of advanced nursing practice. The AACN provides recommendations for the DNP project, but much confusion regarding the context and implementation of the project still exists. At one academic health sciences center, DNP project students often complete their projects within academic practice partnerships. Such partnerships are encouraged by the AACN. Several DNP quality improvement (QI) projects were submitted a hospital's interdisciplinary quality week event. Upon review, some of the abstracts were found to contain aspects of research. This finding prompted the review of all DNP project processes to standardize methods for faculty, students, the University, and the academic practice partner.

Association of Race with End-of-Life Treatment Preferences in Older Adults with Cancer Receiving Outpatient Palliative Care.

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.

Interim Analysis of Attrition Rates in Palliative Care Study on Dignity Therapy.

A routine threat to palliative care research is participants not completing studies. The purpose of this analysis was to quantify attrition rates mid-way through a palliative care study on Dignity Therapy and describe the reasons cited for attrition. Enrolled in the study were a total of 365 outpatients with cancer who were receiving outpatient specialty palliative care (mean age 66.7 ± 7.3 years, 56% female, 72% White, 22% Black, 6% other race/ethnicity). These participants completed an initial screening for cognitive status, performance status, physical distress, and spiritual distress. There were 76 eligible participants who did not complete the study (58% female, mean age 67.9 ± 7.3 years, 76% White, 17% Black, and 7% other race). Of those not completing the study, the average scores were 74.5 ± 11.7 on the Palliative Performance Scale and 28.3 ± 1.5 on the Mini-Mental Status Examination, whereas 22% had high spiritual distress scores and 45% had high physical distress scores. The most common reason for attrition was death/decline of health (47%), followed by patient withdrawal from the study (21%), and patient lost to follow-up (21%). The overall attrition rate was 24% and within the a priori projected attrition rate of 20%-30%. Considering the current historical context, this interim analysis is important because it will serve as baseline data on attrition prior to the outbreak of the COVID-19 pandemic. Future research will compare these results with attrition throughout the rest of the study, allowing analysis of the effect of the COVID-19 pandemic on the study attrition.

The health care cost of palliative care for cancer patients: a systematic review.

OBJECTIVES: Several delivery models of palliative care are currently available: hospital-based, outpatient-based, home-based, nursing home-based, and hospice-based. Weighing the differences in costs of these delivery models helps to advise on the future direction of expanding palliative care services. The objective of this review is to identify and summarize the best available evidence in the US on cost associated with palliative care for patients diagnosed with cancer. METHODS: The systematic review was carried out of studies conducted in the US between 2008 and 2018, searching PubMed, Medline, the Cochrane library, CINAHL, EconLit, the Social Science Citation Index, Embase, and Science Citation Index, using the following terms: palliative, cancer, carcinoma, cost, and reimbursement. RESULTS: The initial search identified 748 articles, of which 16 met the inclusion criteria. Eight studies (50%) were inpatient-based, four (25%) were combined outpatient/inpatient, two (12.5%) reported only on home-based palliative services, and two (12.5%) were in multiple settings. Most included studies showed that palliative care reduced the cost of health care by $1285-$20,719 for inpatient palliative care, $1000-$5198 for outpatient and inpatient combined, $4258 for home-based, and $117-$400 per day for home/hospice, combined outpatient/inpatient palliative care. CONCLUSION: Receiving palliative care after a cancer diagnosis was associated with lower costs for cancer patients, and remarkable differences exist in cost saving across different palliative care models.

Implementing primary palliative care best practices in critical care with the Care and Communication Bundle.

BACKGROUND: Clinician-family communication is a central component of medical decision-making in the intensive care unit (ICU) and the quality of this communication has a direct impact on decisions made regarding care for patients who are critically ill. AIM: The purpose of the project was to emphasise the need for quality improvement in the medical ICU at the University of Florida Health Hospital in regard to communication between the patients, families and providers. METHOD: Interventions included development of a more systemic approach to primary palliative care by using the nationally recognised and published Care and Communication Bundle tool. The Bundle is a standardised clinical pathway of palliative care best practices. RESULTS: During the project period, staff satisfaction/engagement increased from tier 3 to tier 1 level, the medical ICU length of stay decreased from 4.97 days in fiscal year (FY) 2016 to 4.22 days in FY2017. Moreover, the number of patients discharged directly to hospice increased from 21 in FY2016 to 42 in FY2017, representing a 100% increase. Additionally, palliative care consults decreased in the medical ICU (FY2016=108, FY2017=82), as a result of an increase in daily primary palliative care interventions. The findings demonstrate an improvement in outcome measures during the project.

Dignity Therapy Led by Nurses or Chaplains for Elderly Cancer Palliative Care Outpatients: Protocol for a Randomized Controlled Trial.

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. TRIAL REGISTRATION: ClinicalTrials.gov NCT03209440; https://clinicaltrials.gov/ct2/show/NCT03209440. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/12213.

Filling the Void: Hospital Palliative Care and Community Hospice: A Collaborative Approach to Providing Hospital Bereavement Support.

Bereavement services are often provided as components of hospice and palliative care plans, including emotional, psychosocial, and spiritual support provided to individuals and families to assist with grief, loss, and adjustment after the death of a loved one. Patient- and family-centered care is a hallmark of palliative care. Moreover, bereavement counseling is offered as a hospice care benefit that is covered by Medicare and various private insurance plans. However, not all hospital-based palliative care programs offer bereavement support. Many bereaved persons whose loved one dies in the hospital while receiving palliative care services may not have access to a bereavement support program. This practice concept article describes an innovative bereavement program designed to offer support to individuals whose loved one died in the hospital while receiving palliative care. The bereavement team, including clinical professionals from the inpatient palliative care team and two community hospices, developed the University of Florida (UF) Health Bereavement Program. The interprofessional team includes social workers, volunteers, chaplains, nurses, nurse practitioners, and physicians. The Bereavement Program incorporates grief support workshops, follow-up with participants, via postal mail at timed intervals, website access to grief resources, staff education, and an annual evening of remembrance program. Finally, interagency collaboration has extended the reach of bereavement services beyond UF Health into our community at large.