A Process Evaluation of a Palliative Care Social Work Intervention for Cancer Patients in Skilled Nursing Facilities.

Background: Assessing and Listening to Individual Goals and Needs (ALIGN) is a palliative care social work intervention that aims to improve delivery of goal-concordant care for hospitalized older adults with cancer discharged to skilled nursing facilities. Objective: Explore processes through which ALIGN may improve delivery of goal-concordant care to substantiate the conceptual model grounding the intervention and to inform mechanistic hypotheses of how the intervention might be effective. Design: A process evaluation triangulating findings from patient and caregiver interviews with a matrix analysis of ALIGN social worker notes. Setting/Participants: Patients (n = 6) and caregivers (n = 13) who participated in a single-arm pilot study of ALIGN in the United States and 113 intervention notes (n = 18 patients) written by 2 ALIGN social workers. Measurement: Qualitative thematic content analysis Results: Themes included the following: (1) ALIGN helped reconcile participants' misaligned expectations of rehabilitation with the reality of the patient's progressive illness; (2) ALIGN helped participants manage uncertainty and stress about forthcoming medical decision making; (3) the longitudinal nature of ALIGN allowed for iterative value-based goals of care discussions during a time when patients were changing their focus of treatment; and (4) ALIGN activated participants to advocate for their needs. Conclusions: ALIGN offers support in prognostic understanding, communication, and decision making during a pivotal time when patient and caregivers' goals have not been met and they are reassessing priorities. A larger trial is needed to understand how these processes may improve the ability of participants to make value-based decisions and aide in delivery of goal-concordant care. Clinical Trial Registration Number: NCT04882111.

Benefits, Harms, and Stakeholder Perspectives Regarding Opioid Therapy for Pain in Individuals With Metastatic Cancer: Protocol for a Descriptive Cohort Study.

BACKGROUND: Opioids are a key component of pain management among patients with metastatic cancer pain. However, the evidence base available to guide opioid-related decision-making in individuals with advanced cancer is limited. Patients with advanced cancer or cancer that is unlikely to be cured frequently experience pain. Opioids are a key component of pain management among patients with metastatic cancer pain. Many individuals with advanced cancer are now living long enough to experience opioid-related harm. Emerging evidence from chronic noncancer pain literature suggests that longer-term opioid therapy may have limited benefits for pain and function, and opioid-related harms are also a major concern. However, whether these benefits and harms of opioids apply to patients with cancer-related pain is unknown. OBJECTIVE: This manuscript outlines the protocol for the "Opioid Therapy for Pain in Individuals With Metastatic Cancer: The Benefits, Harms, and Stakeholder Perspectives (BEST) Study." The study aims to better understand opioid decision-making in patients with advanced cancer, along with opioid benefits and harms, through prospective examination of patients' pain experiences and opioid side effects and understanding the decision-making by patients, care partners, and clinicians. METHODS: This is a multicenter, prospective cohort study that aims to enroll 630 patients with advanced cancer, 20 care partners, and 20 clinicians (670 total participants). Patient participants must have an advanced solid cancer diagnosis, defined by the American Cancer Society as cancer that is unlikely to be cured. We will recruit patient participants within 12 weeks after diagnosis so that we can understand opioid benefits, harms, and perspectives on opioid decision-making throughout the course of their advanced cancer (up to 2 years). We will also specifically elicit information regarding long-term opioid use (ie, opioids for ≥90 consecutive days) and exclude patients on long-term opioid therapy before an advanced cancer diagnosis. Lived-experience perspectives related to opioid use in those with advanced cancer will be captured by qualitative interviews with a subset of patients, clinicians, and care partners. Our data collection will be grounded in a behavioral decision research approach that will allow us to develop future interventions to inform opioid-related decision-making for patients with metastatic cancer. RESULTS: Data collection began in October 2022 and is anticipated to end by November 2024. CONCLUSIONS: Upon successful execution of our study protocol, we anticipate the development of a comprehensive evidence base on opioid therapy in individuals with advanced cancer guided by the behavioral decision research framework. The information gained from this study will be used to guide interventions to facilitate opioid decisions among patients, clinicians, and care partners. Given the limited evidence base about opioid therapy in people with cancer, we envision this study will have significant real-world implications for cancer-related pain management and opioid-related clinical decision-making. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54953.

Acute cancer-related symptoms and concerns among patients receiving chemotherapy: current state of the science.

PURPOSE: This study provides an updated evaluation of the prevalence and severity of acute cancer-related symptoms and quality of life (QOL) concerns among patients treated with emetogenic chemotherapy. METHODS: Patients were recruited to a larger, multi-site observational study prior to starting chemotherapy. Participants completed sociodemographic questionnaires and clinical data were abstracted via medical record review. Symptoms and QOL were assessed 5 days after starting moderately or highly emetogenic chemotherapy. Functional Assessment of Cancer Therapy - General assessed QOL concerns. Patient Reported Outcomes version of the Common Terminology Criteria for Adverse Events evaluated symptoms. Symptoms were considered severe when participants responded "severe" or "very severe." RESULTS: Participants (N = 1174) were on average 58 ± 13 years, mostly female (73%), non-Hispanic (89%), and White (87%). Most participants were diagnosed with breast (38.1%), gynecological (20%), and gastrointestinal (17.1%) cancer. The most common QOL concerns of any severity were fatigue (94%), anhedonia (89%), dissatisfaction with QOL (86%), and sleep disturbance (86%). The most common severe QOL concerns were anhedonia (44%), fatigue (40%), and inability to work (38%). Decreased appetite (74%), pain (71%), and constipation (70%) were the most common symptoms of any severity, as well as most common severe symptoms (13%, 18%, and 18%, respectively). CONCLUSION: Herein, updates are provided in regard to QOL concerns and symptoms reported by patients in the days after chemotherapy and demonstrates that concerns and symptoms have shifted in the last decade.

Patient Navigator Intervention to Improve Palliative Care Outcomes for Hispanic Patients With Serious Noncancer Illness: A Randomized Clinical Trial.

Importance: Disparities persist across the trajectory of serious illness, including at the end of life. Patient navigation has been shown to reduce disparities and improve outcomes for underserved populations. Objective: To determine the effectiveness of a lay patient navigator intervention, Apoyo con Cariño, in improving palliative care outcomes among Hispanic patients. Design, Setting, and Participants: This was a multicenter randomized clinical trial that took place across academic, nonprofit, safety-net, and community health care systems in urban, rural, and mountain/frontier regions of Colorado from January 2017 to January 2021. Self-identifying Hispanic adults with serious noncancer medical illness and limited prognosis were recruited. Data were collected and analyzed from July 2022 to July 2023. Interventions: Participants randomized to the intervention group received 5 home visits from a bilingual, bicultural lay patient navigator; participants randomized to control received care as usual. Both groups received culturally tailored educational materials. Investigators/outcome accessors remained blinded to participant assignment. Main Outcomes and Measures: Change in score from baseline to 3 months on the Functional Assessment of Chronic Illness Therapy (FACIT) General quality of life (QOL) scale (primary outcome), Advance Care Planning (ACP) Engagement Survey, Brief Pain Inventory, Edmonton Symptom Assessment Scale, and FACIT Spiritual Well-Being subscale; at 6 months, advance directive (AD) documentation; and at 46 months or death, hospice utilization and length of stay, as well as aggressiveness of care at end of life. Results: Of 209 patients enrolled (mean [SD] age, 63.6 [14.3] years; 108 [51.7%] male), 105 patients were randomized to control and 104 patients to the intervention. There were no statistically significant differences in the change in mean (SD) QOL score between the intervention and control groups (5.0 [16.5] vs 4.3 [15.5]; P = .75). Participants in the intervention group, compared with the control group, had statistically significant greater increases in mean (SD) ACP engagement (0.8 [1.3] vs 0.1 [1.4]; P < .001) and were more likely to have a documented AD (62 of 104 [59.6%] vs 28 of 105 [26.9%]; P < .001). There were no statistically significant differences in mean (SD) change in pain intensity score (0-10) between patients in the intervention group compared with control (-0.4 [2.6] vs -0.5 [2.8]; P = .79), nor pain interference (-0.2 [3.7] vs -0.4 [3.7]; P = .71). Patients receiving the intervention were more likely to be referred to hospice compared with patients receiving control (19 of 43 patients [44.2%] vs 7 of 33 patients [21.2%]; P = .04) and less likely to receive aggressive care at end of life (27 of 42 patients [64.3%] vs 28 of 33 patients [84.8%]; P = .046). Conclusion and Relevance: In this randomized clinical trial, a culturally tailored patient navigator intervention did not improve QOL for patients. However, the intervention did increase ACP engagement, AD documentation, and hospice utilization in Hispanic persons with serious medical illness. Trial Registration: ClinicalTrials.gov Identifier: NCT03181750.

Clinician Perceptions of Barriers and Facilitators for Delivering Early Integrated Palliative Care via Telehealth.

Early integrated palliative care (EIPC) significantly improves clinical outcomes for patients with advanced cancer. Telehealth may be a useful tool to deliver EIPC sustainably and equitably. Palliative care clinicians completed a survey regarding their perceptions of the barriers, facilitators, and benefits of using telehealth video visits for delivering EIPC for patients with advanced lung cancer. Forty-eight clinicians across 22 cancer centers completed the survey between May and July 2022. Most (91.7%) agreed that telehealth increases access to EIPC and simplifies the process for patients to receive EIPC (79.2%). Clinicians noted that the elderly, those in rural areas, and those with less-resourced backgrounds have greater difficulty using telehealth. Perceived barriers were largely patient-based factors, including technological literacy, internet and device availability, and patient preferences. Clinicians agreed that several organizational factors facilitated telehealth EIPC delivery, including technological infrastructure (85.4%), training (83.3%), and support from study coordinators (81.3%). Other barriers included systems-based factors, such as insurance reimbursement and out-of-state coverage restrictions. Patient-, organization-, and systems-based factors are all important to providing and improving access to telehealth EIPC services. Further research is needed to investigate the efficacy of telehealth EIPC and how policies and interventions may improve access to and dissemination of this care modality.

Elevating Home Health Aide Input in Co-Creation of COVID-19 Vaccine Messaging.

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.

Reality of Family Caregiving for Hispanics With Alzheimer's Disease and Related Dementias: A Qualitative Analysis.

Background: Underserved Hispanic patients often experience unmet palliative care (PC) needs, particularly those with noncancer diagnoses such as Alzheimer's disease and related dementias. Most caregivers for Hispanic patients are family relatives who are less likely to use health care and community resources and experience high caregiver burden. We adapted a culturally tailored patient navigator (PN) intervention to provide support and improve PC outcomes for Hispanics with Alzheimer's disease and related dementias and their family caregivers (FCGs). Objectives: To explore Hispanic FCGs' experiences and perceptions of caregiving for a loved one, and how our PN intervention impacted their needs. Design: Qualitative descriptive. Setting/Subjects: FCG participants (n = 10) from our randomized control trial's intervention group were recruited from academic and safety net hospitals and community-based clinics across urban and rural Colorado in the United States. Measurements: Data obtained from individual, semistructured, 30-minute telephone interviews were recorded, transcribed, translated, and analyzed using NVivo and qualitative thematic analyses. Results: Four major themes emerged: Methods of Support, Cultural Expectations and Varying Family Contributions, Lack of Self-Care, and Awareness. Subthemes highlighted differing definitions of "contributing," role resentment, and interpersonal issues. Varying familial expectations underscore FCG strain when the burden of caregiving is not shared. Participants used various coping strategies as necessary support and gained awareness through education, guidance, and referrals to resources. Conclusions: PNs helped FCGs and patients beyond the intervention's scope. Providing support and awareness to FCGs, and incorporating cultural beliefs, may improve PC access to disparate populations and guide future interventions. Clinical Trial Registration Number NCT03181750.

Post-Acute Care Outcomes of Cancer Patients <65 Reveal Disparities in Care Near the End of Life.

Background: Post-acute care outcomes for patients with cancer <65 with multiple payers are largely unknown. Objective: Describe the population and outcomes of younger adults discharged to skilled nursing facility (SNF) and those discharged home or with home health care six months following hospitalization. Design: Descriptive cohort analysis. Setting/Subjects: Using a linkage between the Colorado All Payers Claims Database and the Colorado Central Cancer Registry, we studied patients <65 with stage III or IV advanced cancer between 2012 and 2017. Measurements: Receipt of cancer treatment, 30-day readmission, death, and hospice use. Groups of interest were compared by patient demographics and disease characteristics using chi-square tests. Logistic regression was used to describe unadjusted and adjusted outcome rates among discharge setting. Kaplan-Meier method was used to estimate survival by discharge destination. Results: Three percent of patients were discharged to SNF, 79.0% to home, and 18.0% to home health care. SNF discharges were less likely to receive cancer treatment. Among decedents, 39.0%, 51.0%, and 58.0% of SNF, home, and home health care discharges received hospice, respectively. Patients with Medicaid were more likely to be discharged to an SNF. Black/Hispanic patients were more likely to have Medicaid and received less radiation and hospice care, irrespective of discharge location. Those who were discharged to SNF were more likely to receive radiation compared to White patients. Conclusions: Younger patients with cancer discharged to SNF were unlikely to receive cancer treatment and hospice care before death. Racial disparities exist in cancer treatment receipt and hospice use warranting further investigation.

A Web-Based Decision Aid for Caregivers of Persons With Dementia With Firearm Access (Safe at Home Study): Protocol for a Randomized Controlled Trial.

BACKGROUND: Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The "Safety in Dementia" (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. OBJECTIVE: Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. METHODS: The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. RESULTS: The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. CONCLUSIONS: The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. TRIAL REGISTRATION: ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/43702.

Pilot Trial of a Social Work Intervention to Provide Palliative Care for Adults with Cancer in Skilled Nursing Facilities.

Background: Hospitalized patients with cancer and their caregivers discharged to skilled nursing facilities (SNFs) have unmet palliative care needs. Objective: To determine feasibility and acceptability of Assessing and Listening to Individual Goals and Needs (ALIGN), a palliative care social worker (PCSW) intervention, for older adults and their caregivers in SNFs. Design: Single-arm, single-site pilot study. Predefined feasibility goals were >70% intervention completion and study retention rates (postintervention outcomes completed at one week). Setting/Subjects: Twenty-three patients with cancer and their 21 caregivers discharged to 12 SNFs posthospitalization. Measurements: Primary outcomes were feasibility and acceptability. Exploratory patient and caregiver-reported outcomes, including goals of care were collected at baseline and one week postintervention. Health care utilization, mortality, and hospice utilization was collected at the six-month follow-up. Results: Of 73 patients screened, 35 (48%) were eligible and 23 (66%) patients and 21 caregivers enrolled. Eighteen (78%) patients completed the intervention and 10 (44%) patients and 13 (62%) caregivers provided follow-up outcomes. Average age of patients was 73, and 19 (83%) had stage III or IV cancer. Average age of caregivers was 55. Eight (44%) patients' preferences changed to prefer less aggressive care. Nineteen (83%) patients died during or shortly after intervention completion. Qualitative feedback from participant and SNF staff interviews supported high acceptability. PCSW involvement increased illness understanding and patient engagement with advance care planning. SNF staff valued increased palliative support. Conclusions: Intervention completion was >70%, however, not study retention due to higher-than-expected mortality. Future study should account for high mortality and examine whether ALIGN can better prepare surrogate decision makers and enhance the ability of SNFs to address changing goals of care. Clinical Trial Registration Number NCT04882111.

Racism in Palliative Care Research: We Still have a Ways to Go.

This series focuses on addressing the intersection of race and racism in palliative care through roundtable discussions with interdisciplinary clinicians, researchers, educators, and leaders in palliative care. These short discussions are intended to stimulate readers to examine issues of race and racism within the field of hospice and palliative care - in the various forms that it appears - as well as serve as a continual call to action to facilitate and promote equity.

Local Area Hospice Capacity and Rural Disparities in Hospice Use among Older Adults with Metastatic Breast Cancer.

Background: Little is known about how local area hospice capacity and staffing levels impact hospice use in urban versus rural areas. Objectives: To examine the association between local hospice capacity and staffing levels and hospice use in the context of rural disparities in hospice use, among a sample of patients with metastatic breast cancer. Design: A retrospective cohort study using Surveillance Epidemiology End-Results (SEER)-Medicare linked data 2000-2010, Medicare Provider of Service files, and Census 2000 U.S. Zip Code Tabulation Areas files. Setting: Use of Medicare-certified hospice programs among older adults with metastatic breast cancer residing in one of the SEER program cancer registries designated by National Cancer Institute in the United States. Measurements: Measurements of geographic access to hospices include urban/rural characteristics of patient residence and driving time from the nearest Medicare-certified hospice headquarter. Measurements of local-area hospice capacity and staffing levels include per capita number of Medicare-certified hospice programs and full-time employees among older adults within a predefined radius. Results: Among the study population (N = 5418), remote and suburban areas were negatively associated with hospice use. Lower hospice use in remote and suburban areas was associated with fewer per capita number of Medicare-certified hospice program employees in local areas ≥70-minute driving radius (p = 0.0042), while per capita number of Medicare-certified hospice programs in local areas showed no impact. Conclusion: For older patients with metastatic breast cancer, availability of hospice staff, rather than driving distance or the number of hospice agencies, may limit hospice use in remote and suburban areas.

Diet quality indices and changes in cognition during chemotherapy.

PURPOSE: No evidence-based prevention strategies currently exist for cancer-related cognitive decline (CRCD). Although patients are often advised to engage in healthy lifestyle activities (e.g., nutritious diet), little is known about the impact of diet on preventing CRCD. This secondary analysis evaluated the association of pre-treatment diet quality indices on change in self-reported cognition during chemotherapy. METHODS: Study participants (n = 96) completed the Block Brief Food Frequency Questionnaire (FFQ) before receiving their first infusion and the PROMIS cognitive function and cognitive abilities questionnaires before infusion and again 5 days later (i.e., when symptoms were expected to be their worst). Diet quality indices included the Dietary Approaches to Stop Hypertension (DASH), Alternate Mediterranean Diet (aMED), and a low carbohydrate diet index and their components. Descriptive statistics were generated for demographic and clinical variables and diet indices. Residualized change models were computed to examine whether diet was associated with change in cognitive function and cognitive abilities, controlling for age, sex, cancer type, treatment type, depression, and fatigue. RESULTS: Study participants had a mean age of 59 ± 10.8 years and 69% were female. Although total diet index scores did not predict change in cognitive function or cognitive abilities, higher pre-treatment ratio of aMED monounsaturated/saturated fat was associated with less decline in cognitive function and cognitive abilities at 5-day post-infusion (P ≤ .001). CONCLUSIONS: Higher pre-treatment ratio of monounsaturated/saturated fat intake was associated with less CRCD early in chemotherapy. Results suggest greater monounsaturated fat and less saturated fat intake could be protective against CRCD during chemotherapy.

Associations among frailty and quality of life in older patients with cancer treated with chemotherapy.

INTRODUCTION: Previous studies have suggested that frailty among older adults with cancer is associated with a variety of negative outcomes, including greater chemotherapy toxicity and worse survival. However, results often do not include patient-reported outcomes, such as quality of life (QOL). The objective of this study was to evaluate frailty prior to receipt of moderately- or highly-emetogenic chemotherapy and acute changes in QOL in patients at least 65 years of age. It was hypothesized that frail patients would report greater declines in QOL. MATERIALS AND METHODS: Participants completed questionnaires before receiving their first infusion and again five days later. A 59-item deficit accumulation index score was created at baseline using a modified Rockwood frailty index. QOL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G). The relationship between baseline frailty and QOL was evaluated using a dichotomized deficit accumulation index (frail vs. robust) in repeated measures ANOVA. RESULTS: Study participants (n = 151) had a mean age of 72 (SD = 4.5) and 62% were female. Nearly half (42%) were frail at baseline. Frail participants reported worse QOL at baseline compared to robust participants. Frail patients reported smaller declines in overall and physical (p < 0.0001) and emotional (p = 0.006) QOL from baseline to five days after receiving chemotherapy. At five days, frail participants reported better emotional and physical QOL compared to robust participants. DISCUSSION: Contrary to expectations, frail patients reported smaller declines in QOL compared to robust patients using a deficit accumulation index. These results can be used to help educate frail patients on what to expect during treatment.

Financial interventions for family caregivers of individuals with chronic illness: a scoping review protocol.

INTRODUCTION: There are 53 million caregivers in the USA providing informal care for individuals with chronic illnesses. These caregivers contribute significantly to the healthcare system, yet they may experience adverse consequences due to caregiving, including financial burden. The purpose of this scoping review is to fill a research gap on understanding the nature and effect of financial interventions for family caregivers. METHODS AND ANALYSIS: This study will use the Arksey and O'Malley scoping review framework to systematically search for articles in MEDLINE, PubMed, CINAHL Complete, Cochrane Library, PsycINFO, Dissertations & Theses Global, and Web of Science during April 2022. Articles published from 1997 to the present will be included for the review. Data from articles will be extracted and summarised for financial intervention nature, scope, measurement, effect and health system context. ETHICS AND DISSEMINATION: This study does not include human subjects; therefore, no ethical review will be undertaken. Findings will be disseminated in scholarly journals and at caregiving and ageing conferences, such as the Gerontological Society of America.

Ethical and Policy Implications of Financial Burden in Family Caregivers.

Palliative care nurses are key members of the health care team and provide support to patients and their families navigating chronic and life-limiting illness. Financial burden is an issue inherent to chronic illness, yet has not been fully addressed in family caregivers. The purpose of this article is to (1) provide a case study of a family caregiver navigating chronic illness with her daughter and the associated financial and employment consequences and (2) review the nursing ethical, policy, and practice implications of financial burden for family caregivers. The ethical implications of financial burden in family caregivers relate to health equity and health outcomes for both the patient and family caregiver in treatment access and quality. The policy implications include state and federal policies related to caregiver compensation and support and family medical leave. Palliative care nurses play an integral role in addressing caregiver financial burden through assessment, education, referral, and policy support. Family caregivers are essential to the palliative care team, and palliative care nurses have the opportunity to lead initiatives to support the financial well-being of family caregivers in practice, research, and policy settings.

Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study.

BACKGROUND: Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutions when engaging patients and families in EOLPC research. METHODS: We recruited and interviewed 20 clinical investigators and 22 patients or family caregivers through the Palliative Care Research Cooperative Group (PCRC). Interview transcripts were analyzed using constructivist grounded theory methodology. Analysis sought to identify ethical challenges and potential solutions, as well as to synthesize findings into practical recommendations tailored to engaging patients and families in EOLPC research. RESULTS: Our study identified 8 ethical challenges considered unique to the EOLPC research context and 11 potential solutions to these challenges. The most frequently described ethical challenges included the need to minimize burdens of engagement for patients and caregivers, challenges of dealing with death and illness, and paternalism or "gatekeeping" (i.e., withholding the opportunity to participate from patients or caregivers). Investigators and patients or family caregivers conceptualized ethics challenges differently; several issues appeared to fall outside a traditional research ethics paradigm and more into the ethics of relationships. We synthesized these findings into 4 practical recommendations hypothesized to support authentic engagement. CONCLUSIONS: Engaging patients and families in EOLPC research can raise unique ethical challenges. These challenges can be overcome to empower participation, minimize the unique burdens of EOLPC, and promote diversity. Whereas traditional research ethics tend to emphasize protecting research participants who may be vulnerable, an ethics approach based on authentic engagement that explores what it means for investigators and patients or family caregivers to be in a relationship may be needed. Future research is needed to explore this approach and test these recommendations in practice.

Top Ten Tips Palliative Care Clinicians Should Know About Psychedelic-Assisted Therapy in the Context of Serious Illness.

Psychedelic-assisted therapy (PAT) is a burgeoning treatment with growing interest across a variety of settings and disciplines. Empirical evidence supports PAT as a novel therapeutic approach that provides safe and effective treatment for people suffering from a variety of diagnoses, including treatment-resistant depression, substance use disorder, and post-traumatic stress disorder. Within the palliative care (PC) field, one-time PAT dosing may lead to sustained reductions in anxiety, depression, and demoralization-symptoms that diminish the quality of life in both seriously ill patients and those at end of life. Despite a well-noted psychedelic renaissance in scholarship and a renewed public interest in the utilization of these medicines, serious illness-specific content to guide PAT applications in hospice and PC clinical settings has been limited. This article offers 10 evidence-informed tips for PC clinicians synthesized through consultation with interdisciplinary and international leading experts in the field with aims to: (1) familiarize PC clinicians and teams with PAT; (2) identify the unique challenges pertaining to this intervention given the current legalities and logistical barriers; (3) discuss therapeutic competencies and considerations for current and future PAT use in PC; and (4) highlight critical approaches to optimize the safety and potential benefits of PAT among patients with serious illness and their caregivers.