The Journal of Palliative Medicine's "Tell Us More: The Palliative Care Oral History Project" seeks to tell the story of hospice and palliative care through informal interviews with pivotal leaders in the field. In each episode, hosts Drs. Ricky Leiter and Billy Rosa, along with research assistant Dr. Yilong Peng, sit down with an Hospice and Palliative Care luminary and do what our field does best-ask questions, listen, and reflect. In the first episode, Drs. Leiter and Rosa interviewed Dr. Betty Ferrell, Director of Nursing Research and Education, and a Professor at City of Hope Medical Center in Duarte, California. What follows is a transcript of their conversation, edited lightly for clarity.

Health policymakers can leverage change to improve equity in access to care, patient experiences and clinical outcomes. Despite legal progress to reduce health inequalities, social and systemic injustices persist and lesbian, gay, bisexual, trans and queer (LGBTQ+) people have increased risk of some health conditions and poorer health outcomes linked to the discrimination they experience. In 2022, 42 regional integrated care systems were created across England to reduce health inequalities and improve the wellbeing of their local population. This study aimed to examine the inclusion of UK Equality Act (2010) protected characteristics within the 42 publicly available integrated care system strategies, and to consider specifically how LGBTQ + communities and their needs, experiences and outcomes are framed within these strategies. A Critical Discourse Analysis was conducted positioned within a social constructivist paradigm. Almost all strategies talked about the needs of their populations in terms of age (42/42), disability (42/42), gender (41/42), ethnicity (39/42) and maternity or pregnancy (39/32). 27/42 strategies mentioned religion. There were no references to marital status. 22/42 strategies referred to LGBTQ + people, but only around 25

This study adapted ACCESS, a navigator‐led early palliative care model, to address disparities in care for Black and Latina women with advanced breast cancer using qualitative feedback from patients and health care professionals. Findings emphasize the importance of cultural alignment, flexible care, and strong interdisciplinary coordination to enhance acceptability and improve supportive care equity.

This Viewpoint discusses what a value proposition could look like in oncology and how it should reflect a clinician’s commitment to partner with patients to improve outcomes through individualized communication and shared decision-making centered on the patient’s values.

BACKGROUND:The recent wave of clinical trials of psychedelic substances among patients with life-limiting illness has largely focused on individual healing. This most often translates to a single patient receiving an intervention with researchers guiding them. As social isolation and lack of connection are major drivers of current mental health crises and group work is expected to be an important aspect of psychedelic assisted psychotherapy, it is essential that we understand the role of community in psychedelic healing. OBJECTIVES:To explore how psychedelic guides in the United States discuss the role of "community" in naturalistic psychedelic groups. METHODS:This is a secondary qualitative data study of data from a larger modified ethnographic study of psychedelic plant medicine use in the US. Fifteen facilitators of naturalistic psychedelic groups were recruited via snowball sampling. Content analysis was used to identify themes. RESULTS:Participants viewed the concept of community as essential to every aspect of psychedelic work, from the motivation to use psychedelics, to the psychedelic dosing experience and the integration of lessons learned during psychedelic experiences into everyday life. Themes and subthemes were identified. Theme 1: The arc of healing through community (Subthemes: Community as intention, the group psychedelic journey experience, community and integration); Theme 2: Naturally occurring psychedelic communities as group therapy (Subthemes [as described in Table 2]: Belonging, authenticity, corrective experience, trust, touch). SIGNIFICANCE:Results suggest that existing knowledge about therapeutic group processes may be helpful in structuring and optimizing group psychedelic work. More research is needed on how to leverage the benefit of community connection in the therapeutic psychedelic context, including size and composition of groups, selection and dosing of psychedelic substances in group settings, facilitator training, and role of community integration. Psychedelic groups may provide benefits that individual work does not support.

Background The Lancet Commission on global access to palliative care and pain relief introduced the concept of serious health-related suffering (SHS) to measure the worldwide dearth of palliative care. This Article provides an extended analysis of SHS from 1990 to 2021 and the corresponding global palliative care need. Methods This Article is the first to apply the SHS 20 method published in 2024, incorporating prevalence data from the Global Burden of Diseases, Injuries, and Risk Factors Study to improve non-decedent estimates that account for country-level epidemiological variation; adjusting for non-decedent double counting of HIV/AIDS, cancer, cerebrovascular disease, and dementia; improving the non-decedent estimates for cancer using survivorship data from the Global Cancer Observatory and for HIV/AIDS incorporating access to antiretroviral therapy; differentiating by sex; considering more specific age groups allowing for better estimates, especially in children; and adding endocrine, metabolic, blood, and immune disorders to the health conditions causing SHS. We describe SHS trends globally and within country income groups, differentiating among decedents and non-decedents, by health conditions, sex, and across child and adult age groups. Findings The SHS global burden increased by 74% between 1990 and 2021 to almost 735 million individuals, with population growth accounting for only half of that increase. Low-income and middle-income countries (LMICs) accounted for 80% of SHS, with an increase of 83% from 1990 to 2021 compared with a 46% increase in high-income countries (HICs). Between 1990 and 2021, the decedent burden increased by 35%, whereas SHS in non-decedents more than doubled, accounting for 63% of SHS by 2021. The proportion of SHS from communicable diseases declined, especially in LMICs; however, the absolute number stayed relatively stable and even increased from 2019 to 2021 with the start of the COVID-19 pandemic. SHS from non-communicable diseases drastically increased, led by cancer (excluding leukaemia), cardiovascular diseases, and dementia in HICs. HIV/AIDS continued to be a major contributor, accounting for a substantial share of SHS in sub-Saharan Africa. The share of SHS in children decreased from 25% of SHS in 1990 to 14% in 2021 and accounted for 33% of SHS in low-income countries, compared with 2% in HICs. In 2021, SHS in low-income countries was concentrated in female individuals aged 20-49 years (affecting 59% of this population); in HICs, SHS was concentrated in female individuals aged 70 years and older (affecting 54% of this population and probably related to dementia). Interpretation SHS and the associated need for palliative care is a major and persistent but not insurmountable challenge for health systems worldwide. Our findings highlight the urgency to both reduce the avoidable SHS burden through prevention and treatment, and guarantee comprehensive, universal access to palliative care as an equity and health system imperative, especially in LMICs.

The lack of diversity in clinical studies has significant ethical and health consequences, limiting the development of effective treatments for diverse populations. Homogeneous participation in clinical studies contributes to health disparities, particularly among historically underrepresented groups in the United States (US). Racial, ethnic, and other minoritized populations have long been excluded from clinical research. In response, the US Congress mandated the National Institutes of Health to assess the impacts of insufficient diversity in clinical studies. Despite efforts by the government, non-profit organizations, and industry players to improve diversity in clinical studies, progress has been slow due to fragmented approaches. For instance, the new US administration (2025) has recently released executive orders which threaten to reverse the progress made in inclusive clinical research. The Stanford Think Tank on Diversity and Equity in Clinical Trials, held in September 2023, brought together key partners across multiple sectors and professions to discuss barriers and explore potential solutions to participation in clinical studies. In this commentary, we discuss the importance of collaborative, inclusive strategies in clinical study design to advance equitable health outcomes for all. Further, we discuss potential implications of the government’s dismissal of diversity, equity, and inclusion initiatives on diverse research participation.

This rapid review provides an overview of active family engagement (defined as supporting the patient psychologically, physically, spiritually, or emotionally) in hospice and end-of-life care settings across the lifespan. A librarian-assisted search of the CINAHL (Cumulative Index to Nursing and Allied Health Literature) database over the past 5 years (English language only) yielded 1928 articles; 22 of these articles met the inclusion criteria for data extraction. The reviewed literature emphasized the importance of family engagement in hospice and end-of-life care, highlighting the need for effective communication, emotional support, and tailored interventions that nurses may use to support family caregivers. The literature highlighted opportunities to further educate and train palliative and hospice nurses on evidence-based and replicable approaches to supporting families as they deliver care at the end of life.

ABSTRACT:A meaning-focused approach to palliative nursing helps patients and their family caregivers make sense of and cope with serious illness. It also helps nurses find meaning and purpose in their work. This orientation to care promotes a sense of connection, creates a framework for difficult conversations, and optimizes clinical care delivery. This article reviews the theoretical foundations of meaning making, describes formal and informal strategies for delivering meaning-focused nursing care, and suggests opportunities for practice improvement. Making meaning in serious illness care can promote diverse benefits for patients, family caregivers, and nurses.

PURPOSE:Patient portals increase communication, but little is known about response rates or patient characteristics associated with patient responses to portal-enabled questionnaires about health-related values (HRVs). METHODS:We tested feasibility of sending seven HRV questions by portal to medical oncology patients, with responses automatically returned to clinicians. HRV questionnaires were sent 1 week in advance of scheduled follow-up visits. The primary feasibility measure was patient response rate. Secondarily, we assessed patient characteristics associated with responses, and oncology clinicians' impressions. RESULTS:One thousand five hundred fifty-six HRV questionnaires were sent by portal to as many individual patients of five total clinics between July 2023 and July 2024. Seven hundred thirty questionnaires were returned with at least one of the questions answered (47% response rate). Response rate increased significantly (45%-50%, P = .05) after April 2024 when the portal notification was updated with a personalized message from oncologists and two study clinics were added to the initial 3. Nonresponders either returned a blank questionnaire (133, 9%) or did not return anything (693, 45%). Response rates were significantly different by patient race (P = .05): Asian (51%) and White (48%) versus Black (44%) and Hispanic (41%). Female patient responses were longer than males. Response time was associated with patients' oncology team and shorter after April 2024. Participating clinicians' impressions were consistently favorable. CONCLUSION:Automating a patient portal-driven process to broadly scale elicitation of medical oncology outpatients' HRVs and sending aggregated reports of HRVs to oncology teams are feasible and valued by clinicians. Patient characteristics appear to be associated with responses. Ongoing research will investigate technology-supported strategies to optimize response rates across diverse populations (including minoritized patients who may suffer digital health inequity), and measure effects on person-centered communication and care outcomes.

BACKGROUND:Opioid use and adverse events among cancer patients may change with access to medical marijuana. This study investigated the impacts of medical marijuana legalization (MML) since 2016. METHODS:Using a difference-in-differences approach and 2016 to 2022 private insurance claims data, this cross-sectional study included patients (aged 18-64 years) undergoing resection surgery for newly diagnosed (female) breast, colorectal, or lung cancer in 27 states without MML as of 2016. MML policies were classified into (1) no MML, (2) MML without dispensaries (after MML effective date and before the first state-licensed dispensary opened), and (3) MML with dispensaries. Outcomes included during the 6 months postdiagnosis: (1) any opioid prescription, (2) any short-acting oxycodone, hydrocodone, hydromorphone, or morphine prescription ("strong opioids"), (3) any short-acting tramadol or codeine prescription ("weak opioids"), and (4) total morphine milligram equivalents among patients with opioid prescriptions, (5) any all-cause, and (6) any pain-related emergency department visits or hospitalizations. RESULTS:The sample (N = 34,911) included 24,592 patients with breast, 8510 colorectal, and 1809 lung cancer. Compared to no MML, MML with dispensaries was associated with reduced any strong short-acting opioids prescription use (difference = -4.6; 95% CI, -8.6 to -0.5 percentage points [pp]; p = .028) and increased any all-cause adverse hospital events (difference = 2.6; 95% CI, 0.7-4.5 pp; p = .006). MML without dispensaries was associated with increased any weak opioid prescription use (difference = 1.2; 95% CI, 0.5-2 pp; p = .002). CONCLUSIONS:MML policies may have affected the type of opioid prescribed and increased adverse hospital events among patients with cancer and resection surgery. Additional investigation of medical marijuana's impact on cancer pain management is warranted.

Healthcare providers (HCPs) face high rates of distress, experienced as burnout, moral distress, compassion fatigue, and grief. HCPs are also experiencing a crisis in meaning whereby distress is associated with disconnection from meaning in work and, in turn, a lack of meaning in work can further perpetuate distress for HCPs. Although scalable systems-level solutions are needed to tackle multidimensional HCP distress, it is also necessary to address HCP suffering at individual, team, and institutional levels. Targeted interventions to alleviate HCP distress are limited. Meaning-centered psychotherapy (MCP), a brief, evidence-based, intervention first developed for persons with advanced cancer, holds promise to mitigate HCP distress. This study adapted MCP for HCPs through feedback from a multidisciplinary sample of clinicians trained in MCP and working in healthcare settings. A survey was distributed electronically between November and December 2023 to HCPs previously trained in MCP assessing quantitative and qualitative feedback on the appropriateness of MCP for HCPs, the relevance of MCP session topics and exercises, and implementation barriers and facilitators. Descriptive statistics on relevant participant ratings were calculated; a matrix analysis approach was used for qualitative data. Forty participants, primarily mental health providers, expressed that MCP principles were highly relevant for HCPs and offered key insights on appropriate intervention modifications, including the need for a primary focus on meaning in professional life, reduced intervention length, and delivery in group format. Feedback informed critical adjustments to promote appropriateness and acceptability of MCP-HCP which is poised for pilot testing to determine its feasibility and preliminary efficacy for HCPs.

OBJECTIVES:Cancer is associated with physical, social, spiritual, and psychological changes in patients and their caregivers. However, in sub-Saharan Africa, there is lack of evidence on the impact of gender, social norms, and relationship dynamics in the face of terminal illness. The aim of this paper is to explore how gender identity, social norms, and power relations are impacted when a person is living in Uganda with advanced cancer. METHODS:Focus groups with adult men and women living with advanced cancer in Uganda were conducted. Interviews explored the social effects of cancer and common challenges, including how both disease and treatment affect the patient and marital relationships within their families. Participants' recommendations were sought to improve the social well-being of patients and their families. Data were analyzed using inductive thematic analysis. RESULTS:Men and women experienced negative changes in their roles and identities, often feeling unable to fulfill their marital duties in terms of intimacy, their social roles and responsibilities based on societal expectations. Men expressed loss of a "masculine" identity when unable to provide economically for the household. This led to tension in the familial power dynamics, contributing to relationship breakdown and gender-based violence (GBV) against spouses. Women noted challenges with parenting, relationship breakdowns, and increased GBV. SIGNIFICANCE OF RESULTS:Gender impacts the patient and the family dynamic throughout the life course, including during advanced cancer. Patients and caregivers experience a change in their roles and identities while coping with existential distress and end-of-life tasks. Given these results, gender considerations and dynamics should be incorporated into overall palliative care provision. In addition, there is a need to integrate GBV screening and support in cancer services to address social health and safety needs in the context of serious illness.

CONTEXT:Patients with advanced cancer discharged from the hospital with no plan for further disease-directed treatment (on 'best supportive care'; BSC) and without specialized palliative care at home are extremely vulnerable to end-of-life suffering and hospital readmission. OBJECTIVES:To assess preliminary outcomes of PATHS (Post-Acute Transition to Home with Supportive Care), a nurse practitioner-led telehealth intervention delivering proactive, intensive, specialized palliative care in the immediate two-week post-discharge period. METHODS:We conducted a single-arm prospective quality improvement evaluation of PATHS with patients ≥21 years with advanced solid tumor malignancies discharged from the hospital on BSC having initially declined hospice. Sociodemographic and illness characteristics, index hospital admission (IHA) and discharge data, and PATHS outcomes were descriptively analyzed. Competing-risks analysis provided cumulative incidence of hospital readmission following IHA discharge (primary outcome). RESULTS:Patients (n = 30) had a median age of 67 years and were predominantly female (53%) and white (63%). Colorectal cancer was the most common diagnosis (30%) and pain the most common IHA reason (33%). The 30-day cumulative incidence of hospital readmission was 33% (95% CI: 16, 51) compared to a historical control rate of 43% (95% CI: 26, 59). No patient receiving timely hospice care at home was readmitted to the hospital. At PATHS completion, 11 patients (36%) had transitioned to hospice, nine of whom accepted a hospice referral during their first PATHS visit. CONCLUSION:PATHS fills a substantive practice gap, potentially reducing end-of-life hospital readmissions while increasing home-based, specialized palliative care access for BSC patients with cancer approaching death after hospitalization.

"Total pain" is a fundamental concept in palliative care. It emphasizes the multidimensional nature of pain and suffering in patients with advanced illnesses. Originally introduced by Dame Cicely Saunders, the spectrum of total pain extends beyond pure physical pain to further encompass psychological, social, and spiritual distress. By focusing on the above four components of total pain, clinicians can provide better care for their patients with advanced illnesses and ultimately improve their overall quality of life. Compiled by a multidisciplinary team of experts in the field, this article provides ten key strategies (tips) for palliative care clinicians to enhance their understanding and management of total pain in clinical settings.

Abstract Rapid declines in opioid analgesics dispensed in American communities since 2011 raise concerns about inadequate access to effective pain management among patients for whom opioid therapies are appropriate, especially for those living in racial/ethnic minority and socioeconomically deprived communities. Using 2011 to 2021 national data from the Automated Reports and Consolidated Ordering System and generalized linear models, this study examined quarterly per capita distribution of oxycodone, hydrocodone, and morphine (in oral morphine milligram equivalents [MMEs]) by communities' racial/ethnic and socioeconomic profiles. Communities (defined by 3-digit-zip codes areas) were classified as “majority White” (≥50% self-reported non-Hispanic White population) vs “majority non-White.” Community socioeconomic deprivation was measured by quartiles of population-weighted Social Deprivation Index. Overall, majority non-White communities had at least 40% lower mean adjusted per capita distribution than majority White communities across all levels of socioeconomic deprivation. Among the least deprived communities, the adjusted mean per capita distribution was 46.0 (95% confidence interval [CI], 40.0-52.0) for majority non-White vs 82.8 (95% CI, 78.5-87.1) MMEs for majority White communities. Among the most deprived communities, the distribution was 78.0 (95% CI, 70.8-85.1) for majority non-White vs 134.4 (95% CI, 125.4-143.4) MMEs for majority White communities. The lower distribution in majority non-White communities was statistically significant across all socioeconomic deprivation levels and over all study years. Availability of commonly prescribed opioid analgesics was substantially lower in majority non-White communities than in majority White communities across all levels of socioeconomic deprivation. Policies governing opioid analgesic availability warrant careful consideration and potential adjustments.

CONTEXT:Estimates of serious health-related suffering (SHS) demonstrate immense unmet need for palliative care, predominately in low- and middle-income countries (LMICs). Because opioids are essential medicines in palliative care (PC), measuring their availability can be used to evaluate the capacity of health systems to meet need. OBJECTIVES:Present the methodology for calculating Distributed Opioids in Morphine Equivalents (DOME)- introduced in the Lancet Commission on Global Access to Palliative Care and Pain Relief report - and how it can be used as a simple indicator to quantify unmet pain relief and PC need. METHODS:Using International Narcotics Control Board (INCB) data, DOME applies relative potency estimates to convert the annualized quantities of clinically appropriate opioids procured by a country to oral morphine equivalent milligrams. To quantify unmet need, an expert group proposed health condition-specific estimates for opioid need and used available data on the burden of SHS to posit the annual opioid quantity required by country for symptomatic treatment of pain or breathlessness. Comparing this to DOME generates DOME%SHSNEED, the proportion of opioids needed for palliative care that can be fulfilled by the opioid procured by a country during a year. RESULTS:DOME and DOME%SHSNEED can be used to measure, over time, the capacity of countries to meet PC need, as a key component of universal health coverage. Identifying access gaps disproportionately impacting LMICs can promote better health system performance and guide countries and institutions in policy making. CONCLUSION:DOME and DOME%SHSNEED can be used to monitor health system progress to redress disparities and promote access to medically indicated opioid therapy in palliative care.

Fatigue is a multifactorial symptom that is commonly faced by patients with cancer, chronic disease, and other serious illnesses. Fatigue causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a consortium of professionals across cancer care, physical therapy, exercise, pharmacy, psychiatry, and palliative medicine offers tips and insights on evaluating, categorizing, and addressing fatigue in the setting of serious illness. The comprehensive approach to managing fatigue underscores the importance of collaborative efforts characteristic of interdisciplinary palliative care. Prioritizing screening, diagnosing, and treating fatigue is crucial for enhancing patients' and families' overall quality of life.