The American journal of hospice & palliative care最新文献

Background and Objectives: Traditional methods of fidelity monitoring are not possible in pragmatic trials in real-world clinical settings. We describe our approach to monitoring and reinforcing the fidelity to ACP conversations for a hard-to-reach subpopulation by using standardized patients in a pragmatic trial. Research Design and Methods: We developed standardized patient scenarios grounded in the Respecting Choices First Steps™ Advance Care Planning curriculum to provide an opportunity to reinforce and assess ACP facilitator competency. Scenarios represented one-on-one encounters. The first case was a standardized patient with cognitive impairment and the second case involved a standardized patient with dementia and their care partner. A previously validated fidelity checklist was used to score skills and behaviors observed during simulations including encounter set-up, ACP topics, and general communication. Simulations involved voice teleconferencing to align primary modality of ACP in the pragmatic trial. Results: Six facilitators completed two standardized patient cases each. Overall fidelity scores were moderately high (78.8% ± 11.7; 63.4 - 95.6) for the case with cognitive impairment and for the case with the patient with dementia and care partner (76.2% ± 13.0; 54.4 - 91.5). Discussion and Implications: Simulation using standardized patients supported fidelity monitoring and provided coachable feedback to support facilitator competency. Our study can help inform future research and training related to advance care planning in older adults living with Alzheimer's disease and related disorders.

Home health aides (HHAs) care for patients highly vulnerable to COVID-19 and are disproportionately women from minority communities that have been adversely impacted by COVID-19. Yet, direct care workers are less likely to be vaccinated against COVID-19 compared to others. As the pandemic evolves, interest in vaccination may decrease suggesting the need for relevant vaccine messaging to HHAs. Objectives: (1) to describe HHAs and administrators' perspectives related to COVID-19 vaccination messaging, and (2) to co-design a Communication Toolkit to create COVID-19 vaccine messages. Methods: HHAs and administrators from 4 geographically diverse Palliative Care Research Cooperative (PCRC) hospice agencies were recruited for a multi-method process involving qualitative interviews (17 HHAs and 5 administrators), community engagement (CE) studios, and development of a Communication Toolkit. Interviews were guided by the PEN-3 conceptual framework to explore barriers and facilitators to vaccination. Data were analyzed using qualitative content analysis. Results: Despite power differences, HHAs and administrators share a commitment to protecting patients affected by serious illness. HHAs desire vaccine messaging that includes personal narratives, good news about the vaccine, and facts about benefits and risks of the vaccine. Preferred message formats include the agency intranet, daily briefings, or "little seeds" (ie, short, high-impact information). Through the studios, HHAs provided input on a Toolkit prototype with messages tailored to the context of home care. Conclusions: Grounded in the commitment of HHAs and administrators to protecting vulnerable patients, we co-created an adaptable Communication Toolkit to address COVID-19 vaccination misinformation and mistrust among direct care workers.

Introduction: Little is known about the identity and moral experience of clinicians who provide the option of aid in dying to terminally ill Americans.

Methods: In May 2023 we distributed an email survey to clinicians registered for the American Clinician's Academy on Medical Aid in Dying listserv.

Results: Of the 72 clinicians who responded, 90% were of white race, 50% were over 60 years old, and 47% had been in practice for over 20 years. Most clinicians report practicing primary care (39%) or hospice/palliative care (33%); 25% of clinicians had training in palliative medicine. 22% described their practice as a specialized "aid-in-dying practice" and 26% either "rarely" or "never" cared for the terminally ill outside the context of aid in dying. A majority (56%) of clinicians were either affiliated with an independent practice or unaffiliated. Before they began aid-in-dying work, 26% of clinicians reported having felt "somewhat" or "very" morally conflicted; after having written an aid in dying prescription, 96% felt "hardly" or "not at all" conflicted. On average, clinicians felt that aid-in-dying laws balance protection of patients with access; 39% believed that the laws were "somewhat" or "overly" protective.

Conclusion: Many responding clinicians report caring for patients considering aid in dying in specialized practices or otherwise in unaffiliated or independent practice. Clinicians report that providing aid in dying (and writing an aid-in-dying prescription) resulted in less reported moral conflict toward aid in dying.

Background: In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL).

Objective: To understand communication behaviors used by AL residents and their informal caregivers (i.e., family members or friends) related to death and dying, and address communication needs or opportunities applicable to EOL care in AL.

Design: A thematic analysis of in-depth interviews and fieldnotes from a subsample of data from a 5-year NIA-funded study.

Setting/subjects: Participants included 15 resident-caregiver dyads from three diverse AL communities in Atlanta, Georgia in the U.S.

Measurements: Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined.

Results: We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers).

Conclusions: Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost.

Background: Several studies chronicle profit-making negatively impacting US hospice care quality. However, no study has reported on caregiver satisfaction expressed online by hospice.

Objectives: Assess the relationship between online caregiver sentiment, market share, profit status, and Consumer Assessment of Healthcare Providers and Systems (CAHPS®) scores among the 50 largest US hospices.

Methods: Retrospective mixed methods of sentiment and multivariate regression analysis. Data sources were online caregiver reviews, provider CAHPS hospice survey data.

Results: Being a larger, for-profit predicted diminished caregiver and employee satisfaction. Caregiver Sentiment and CAHPS Composite were so highly associated (r = .862, P < .001), that they are converging on overall caregiver satisfaction. With large effect, CAHPS Star Rating was significantly higher than Review Star Rating. For-profits had significantly higher overall Emotional Intensity than non-profit hospices, again with large effect. Caregiver Sentiment, Review Star Rating, and Glassdoor Composite each predicted CAHPS Composite. Lack of staffing was more frequent among for-profits (13%) than non-profits (6%). Out-of-scope expectations prevalence was 9%.

Conclusion: Caregiver and employees had better experiences with non-profits than for-profits. Anger and frustration was expressed toward large, for-profit providers more focused on admissions, profiteering, and paying dividends than actual care. The CAHPS appears to draw more satisfied caregivers. Whereas, online reviewing provides open-ended, real-time voicing of care quality concerns. Even with distinct methods, CAHPS survey and review sentiment analysis converge on caregiver satisfaction, yet CAHPS paints a much rosier picture of hospice quality than online reviews. Future research should explore sentiments by topic and hospice to increase customer advocacy.

Background: The place of death of cancer patients is an important aspect of end-of-life care. However, little research has been conducted regarding factors that may influence the preferred and actual place of death in cancer patients and whether the patients die at their preferred place of death. In this study, we aimed to investigate the preferred and actual place of death for palliative cancer patients, and factors influencing these variables. Methods: Patients diagnosed with cancer and admitted to a palliative care team across three Swedish cities between 2019 and 2022 were asked for participation. Participants completed a questionnaire capturing sociodemographic data and preferred place of death. Further data regarding age, sex, and cancer type were collated at inclusion, and the actual place of death recorded for those deceased by 5-May-2023. Results: The study included 242 patients. A majority (79%) wanted to die at home which was the actual death location for 76% of the patients. When the place-of-death decision was made by the patient alone, 75% chose home, compared to 96% when decided jointly with relatives-a statistically significant variation (p = 0.0037). For the patients who wanted to die at home, 80% actually died at home, with insignificant disparities among subgroups. Conclusions: Most palliative cancer patients in this Swedish cohort preferred and achieved death at home. Involving relatives in decision-making may influence the preferred place of death, however larger studies are needed to comprehensively assess factors affecting the preferred and actual place of death in different subgroups of patients.

Objectives: This study identifies the mechanisms through which supportive and palliative care services at the end-of-life helped prevent unnecessary use of acute care services.

Background: From 2016 to 2021, the Medicare Care Choices Model (MCCM) tested whether offering Medicare beneficiaries the option to receive supportive and palliative care services through hospice providers, concurrently with treatments for their terminal conditions, improved patients' quality of life and care and reduced Medicare expenditures. Previous MCCM evaluation results showed that the model achieved its goals, but did not examine in depth the causal mechanisms leading to these results.

Methods: Mixed-methods evaluation based on descriptive analysis of MCCM encounter data and qualitative analysis of interviews with staff from high-performing MCCM hospices.

Results: MCCM hospices provided 217 156 encounters to 7263 enrollees over 6 years. Enrollees received on average 30 encounters with hospice staff while enrolled in the model, representing about 10 encounters per month enrolled. Most encounters were delivered by clinically trained staff in the patient's home. Hospice staff identified five services critical for keeping patients from seeking acute care services: early and frequent needs assessments, direct observation of patients in their homes, immediate responses to patients' medical complaints, round-the-clock telephone access to nursing staff, and communication and coordination of care with primary care physicians and specialists.

Conclusions: Palliative care approaches that are high-touch, employ clinically trained staff who visit patients in their homes, routinely evaluate how to manage patient symptoms, and are available when needs arise can improve outcomes and decrease costs at the end of life.

Hospice is touted as an exemplary model for end-of-life care. However, there is little generalizable evidence estimating benefits of hospice at the national level. Using a national population-based probability sample of U.S. adults with weights applied (data collected Spring/Summer 2015), we conducted six logistic regression models to evaluate linkages between hospice involvement and end-of-life outcomes (pain, home death, presence of family, access to life-prolonging care, respect for spiritual/religious beliefs, financial burden) from N = 235 informal caregivers of decedents prior to death. Respondents were M = 55 years old (SD = 17), 55% female, 77% White, 91% non-Hispanic, and 71% had cared for a hospice recipient. In fully adjusted analyses, hospice users had better reported outcomes observed in two models: (a.) presence of family/friends at death (OR = 2.82, SE = .48, P < .05), and (b.) respect for spiritual/religious beliefs (OR = 9.52, SE = .73, P < .01). Hospice utilization was not statistically significant (P > .05) in all other adjusted models. Although more research is needed, findings support claims that hospice remains a high quality option for end-of-life care in the U.S.

Background: Opioid therapy is critical for pain relief for most hospice patients but may be limited by adverse side effects. Combining medical cannabis with opioids may help mitigate adverse effects while maintaining effective pain relief. Aim: This single-arm study investigated the impact of combined medical cannabis/opioid therapy on pain relief, opioid dose, appetite, respiratory function, well-being, nausea, and adverse events in hospice inpatients. Design: Adult hospice inpatients using scheduled oral, parenteral, or transdermal opioids for pain were administered standardized oral medical cannabis, 40 mg CBD/1.5 mg THC or 80 mg CBD/3 mg THC. Descriptive statistics detailed demographic and clinical baseline characteristics, the Mann-Whitney test compared outcomes, and the longitudinal mixed effects regression model analyzed longitudinal effects of combined therapy. Setting/Participants: Sixty-six inpatients at The Connecticut Hospital, Inc. were assessed over 996 treatment days; average age was 68.2 ± 12.9 years, 90.9% were white. Cancer was the most common diagnosis. Results: The medical cannabis/opioid combination showed a significant longitudinal reduction in pain intensity (P = .0029) and a non-significant trend toward lower opioid doses. Well-being, appetite, nausea, and respiratory function showed non-statistically significant changes. Three patients (4.5%) experienced minor, reversible adverse events potentially related to medical cannabis. No serious or life-threatening adverse events were seen. Conclusion: Combination medical cannabis/opioid therapy showed statistically significant pain relief and may have the potential for reducing opioid dose and mitigating opioid toxicity, offering a safe pain management alternative to opioids alone for patients in end-of-life care settings, and warrants further investigation in larger controlled trials.

Purpose: Code status orders are standard practice impacting end-of-life care for individuals. This study reviews the impact of a COVID unit on physician behaviors towards goal-concordant end-of-life care at an urban academic tertiary-care hospital. Methods: We conducted a retrospective cohort study of code status ordering on adult inpatients comparing the pre-pandemic period to patients who tested positive, negative and were not tested during the pandemic from January 1, 2019, to December 31, 2020. Results: We analyzed 59,471 unique patient encounters (n = 35,317 pre-pandemic and n = 24,154 during). 1,631 cases of COVID-19 were seen. The rate of code status orders among all inpatients increased from 22% pre-pandemic to 29% during the pandemic (P < .001). Code status orders increased for both patients who were COVID-negative (32% P < .001) and COVID-positive (65% P < .001). Being in a cohorted COVID unit increased code status ordering by an odds of 4.79 (P < .001). Compared to the pre-pandemic cohort, the COVID-positive cohort is less female (50% to 56% P < .001), more Black (66% to 61% P < .001), more Hispanic (6.5% to 5%) and less white (26% to 30% P < .001). Compared to Black patients, white patients had lower odds (.86) of code status ordering (P < .001). Other race/ethnicity categories were not significant. Conclusions: Code status ordering remains low. Compared to pre-pandemic rates, the frequency of orders placed significantly increased for all patients during the pandemic. The largest increase occurred in patients with COVID-19. This increase likely occurred due to protocols in the COVID unit and disease uncertainty.