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BACKGROUND: Medical student end-of-life care training provides insight into the hidden curriculum and physician professional development. DESCRIPTION: Second-year medical students at a university medical center listen to a panel discussion of 4th-year students and residents describing their end-of-life care experiences during clerkships. This discussion is intended to provide 'anticipatory guidance' to 2nd-year students about challenging situations they might encounter on the wards. The purpose of this study was to analyze the content of the panel discussions by 4th-year students and residents to better understand their views of the end-of-life care curriculum. EVALUATION: We performed a qualitative content analysis of transcripts from 2 years of panel discussions. Participants' comments focused primarily on the complexity of the role of medical students in end-of-life care. Three major themes emerged in the sessions: defining professional identity, conflicting expectations, and limited medical experience. CONCLUSIONS: The role of medical students in end-of-life care can be complex, confusing, and contradictory. Emotional support and elucidating the hidden curriculum may assist students with the process of physician enculturation and end-of-life care education. [ABSTRACT FROM AUTHOR]

Little is known about whether introducing palliative care to seriously ill outpatients continuing to pursue treatment of their disease is acceptable or beneficial to patients. Intervention patients in a trial of outpatient palliative care consultation completed structured exit interviews as part of a qualitative study. Participants had advanced heart or lung disease or cancer, and a life expectancy between 1 to 5 years as estimated by their primary care physician (PCP). Thirty-five of 50 intervention patients (70%) completed the final interview. Twenty-one patients (60%) reported that the team uncovered previously undiagnosed medical problems, 12 patients (34.3%) reported decreased primary care visits, and 8 (22.9%) reported avoiding emergency department visits. Most patients reported improved satisfaction with family caregivers (85.7%), PCPs (80%), and the medical center (65.7%). Most patients (68.6%) would have wanted the intervention even earlier in the course of their illness. Seriously ill outpatients found palliative care acceptable and helpful, reporting increased satisfaction and decreased health care utilization. [ABSTRACT FROM AUTHOR]

As patients near the end of life, their spiritual and religious concerns may be awakened or intensified. Many physicians, however, feel unskilled and uncomfortable discussing these concerns. This article suggests how physicians might respond when patients or families raise such concerns. First, some patients may explicitly base decisions about life-sustaining interventions on their spiritual or religious beliefs. Physicians need to explore those beliefs to help patients think through their preferences regarding specific interventions. Second, other patients may not bring up spiritual or religious concerns but are troubled by them. Physicians should identify such concerns and listen to them empathetically, without trying to alleviate the patient's spiritual suffering or offering premature reassurance. Third, some patients or families may have religious reasons for insisting on life-sustaining interventions that physicians advise against. The physician should listen and try to understand the patient's viewpoint. Listening respectfully does not require the physician to agree with the patient or misrepresent his or her own views. Patients and families who feel that the physician understands them and cares about them may be more willing to consider the physician's views on prognosis and treatment. By responding to patients' spiritual and religious concerns and needs, physicians may help them find comfort and closure near the end of life. [ABSTRACT FROM AUTHOR]

Patient sexuality and intimacy comprise important dimensions of quality of life (QOL), making them essential topics for palliative care (PC) clinicians to address. Created with interprofessional input from PC, urology, gynecology, sexual health, oncology, psychiatry, psychology, nursing, and social work, this article offers 10 high-yield, evidence-based tips to better equip PC clinicians to address sexuality and intimacy for patients with serious illness. These tips highlight skills such as opening discussions, assessing concerns through a biopsychosocial model, and thinking through appropriate interventions to improve QOL.

Importance: Numerous studies show that early palliative care improves quality of life and other key outcomes in patients with advanced cancer and their caregivers, although most lack access to this evidence-based model of care., Objective: To evaluate whether delivering early palliative care via secure video vs in-person visits has an equivalent effect on quality of life in patients with advanced non-small cell lung cancer (NSCLC)., Design, Setting, and Participants: Randomized, multisite, comparative effectiveness trial from June 14, 2018, to May 4, 2023, at 22 US cancer centers among 1250 patients within 12 weeks of diagnosis of advanced NSCLC and 548 caregivers., Intervention: Participants were randomized to meet with a specialty-trained palliative care clinician every 4 weeks either via video visit or in person in the outpatient clinic from the time of enrollment and throughout the course of disease. The video visit group had an initial in-person visit to establish rapport, followed by subsequent virtual visits., Main Outcomes and Measures: Equivalence of the effect of video visit vs in-person early palliative care on quality of life at week 24 per the Functional Assessment of Cancer Therapy-Lung questionnaire (equivalence margin of ±4 points; score range: 0-136, with higher scores indicating better quality of life). Participants completed study questionnaires at enrollment and at weeks 12, 24, 36, and 48., Results: By 24 weeks, participants (mean age, 65.5 years; 54.0% women; 82.7% White) had a mean of 4.7 (video) and 4.9 (in-person) early palliative care encounters. Patient-reported quality-of-life scores were equivalent between groups (video mean, 99.7 vs in-person mean, 97.7; difference, 2.0 [90% CI, 0.1-3.9]; P = .04 for equivalence). Rate of caregiver participation in visits was lower for video vs in-person early palliative care (36.6% vs 49.7%; P < .001). Study groups did not differ in caregiver quality of life, patient coping, or patient and caregiver satisfaction with care, mood symptoms, or prognostic perceptions., Conclusions and Relevance: The delivery of early palliative care virtually vs in person demonstrated equivalent effects on quality of life in patients with advanced NSCLC, underscoring the considerable potential for improving access to this evidence-based care model through telehealth delivery., Trial Registration: ClinicalTrials.gov Identifier: NCT03375489.

Purpose: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer., Methods: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations., Results: The literature search identified 52 relevant studies to inform the evidence base for this guideline., Recommendations: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

Context/objectives: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations., Methods: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions., Results: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase., Conclusion: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Little is known about equity in utilization of outpatient palliative care (PC)., Objectives: To explore whether patient-level factors are associated with completing initial and follow-up visits among patients referred to outpatient PC., Methods: Using electronic health record data, we generated a cohort of all adults referred to outpatient PC at University of California, San Francisco October 2017-October 2021. We assessed whether demographic and clinical characteristics were associated with completion of 1) an initial PC visit and 2) at least one follow-up visit., Results: Of patients referred to outpatient PC (N = 6,871), 60% completed an initial visit; 66% of those who established care returned for follow-up. In multivariable models, patients who were less likely to complete an initial visit were older (OR per decade 0.94; 95% confidence interval [CI] 0.89-0.98), Black (OR 0.71; 95% CI 0.56-0.90), Latinx (OR 0.69; 95% CI 0.57-0.83), unpartnered (OR 0.80; 95% CI 0.71-0.90), and had Medicaid (OR 0.82; 95% CI 0.69-0.97). Among patients who completed an initial visit, those less likely to complete a follow-up visit were older (OR 0.88; 95% CI 0.82-0.94), male (OR 0.83; 95% CI 0.71-0.96), preferred a language other than English (0.71; 95% CI 0.54-0.95), and had a serious illness other than cancer (OR 0.74; 95% CI 0.61-0.90)., Conclusion: We found that Black and Latinx patients were less likely to complete an initial visit and those with a preferred language other than English were less likely to complete a follow-up visit. To promote equity in PC, these differences and their impact on outcomes must be explored., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

This serves as a white paper by the North American Neuroendocrine Tumor Society (NANETS) on the practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care. The authors involved in the development of this manuscript represent a multidisciplinary team of patient advocacy, palliative care, and hospice care practitioners, endocrinologist, and oncologists who performed a literature review and provided expert opinion on a series of questions often asked by our patients and patient caregivers affected by this disease. We hope this document serves as a starting point for oncologists, palliative care teams, hospice medical teams, insurers, drug manufacturers, caregivers, and patients to have a frank, well-informed discussion of what a patient needs to maximize the quality of life during a routine, disease-directed care as well as at the end-of-life.

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.

Outpatient palliative care facilitates timely symptom management, psychosocial care and care planning. A growing number of cancer centers have either stand-alone or embedded outpatient palliative care clinics. In this "Controversies in Palliative Care" article, three groups of thought leaders independently answer this question. Specifically, each group provides a synopsis of the key studies that inform their thought processes, share practical advice on their clinical approach, and highlight the opportunities for future research. One group advocates for stand-alone clinics, another for embedded, and the third group tries to find a balance. In the absence of evidence that directly compares the two models, factors such as cancer center size, palliative care team composition, clinic space availability, and financial considerations may drive the decision-making process at each institution. Stand-alone clinics may be more appropriate for larger academic cancer centers or palliative care programs with a more comprehensive interdisciplinary team, while embedded clinics may be more suited for smaller palliative care programs or community oncology programs to stimulate referrals. As outpatient clinic models continue to evolve, investigators need to document the referral and patient outcomes to inform practice., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Disparity in mental health care among cancer patients remains understudied., Methods: A large, retrospective, single tertiary-care institution cohort study was conducted based on deidentified electronic health record data of 54,852 adult cancer patients without prior mental health diagnosis (MHD) diagnosed at the University of California, San Francisco between January 2012 and September 2019. The exposure of interest was early-onset MHD with or without psychotropic medication (PM) within 12 months of cancer diagnosis and primary outcome was all-cause mortality., Results: There were 8.2% of patients who received a new MHD at a median of 197 days (interquartile range, 61-553) after incident cancer diagnosis; 31.0% received a PM prescription; and 3.7% a mental health-related visit (MHRV). There were 62.6% of patients who were non-Hispanic White (NHW), 10.8% were Asian, 9.8% were Hispanic, and 3.8% were Black. Compared with NHWs, minority cancer patients had reduced adjusted odds of MHDs, PM prescriptions, and MHRVs, particularly for generalized anxiety (Asian odds ratio [OR], 0.66, 95% CI, 0.55-0.78; Black OR, 0.60, 95% CI, 0.45-0.79; Hispanic OR, 0.72, 95% CI, 0.61-0.85) and selective serotonin-reuptake inhibitors (Asian OR, 0.43, 95% CI, 0.37-0.50; Black OR, 0.51, 95% CI, 0.40-0.61; Hispanic OR, 0.79, 95% CI, 0.70-0.89). New early MHD with PM was associated with elevated all-cause mortality (12-24 months: hazard ratio [HR], 1.43, 95% CI, 1.25-1.64) that waned by 24 to 36 months (HR, 1.18, 95% CI, 0.95-1.45)., Conclusions: New mental health diagnosis with PM was a marker of early mortality among cancer patients. Minority cancer patients were less likely to receive documentation of MHDs or treatment, which may represent missed opportunities to identify and treat cancer-related mental health conditions., (© 2021 American Cancer Society.)

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.

Heathcare Workers (HCWs) recognize their responsibility to support the bereaved loved ones of our patients, but we also must attend to our own professional and personal grief in the COVID-19 pandemic. COVID-19 grief is occurring in the setting of incomplete grief, disenfranchised grief, fractured US governmental leadership, and evidence of great mistrust, systemic racism, and social injustice. In the intensity and pervasiveness of COVID-19, HCW fears for themselves, their colleagues, and their own loved ones are often in conflict with professional commitments. Even at the dawn of promising national and global vaccination programs, significant HCW morbidity and mortality in COVID-19 has already become clear, will continue to grow, and these effects likely will last far into the future. Given the risks of complicated grief for HCWs in the setting of COVID-19 deaths, individual HCWs must put every effort into their own preparation for these deaths as well as into their own healthy grieving. Equally importantly, our healthcare systems have a primary responsibility both to prepare HCWs and to support them in their anticipatory and realized grief. Special attention must be paid to our HCW trainees, who may have not yet developed personal or professional grief management strategies and are coming into healthcare practice during a time of great disruption to both teaching and clinical care., Competing Interests: Disclosures/Conflicts of Interest All authors have nothing to disclose and no conflicts of interest. No funding was received for this paper., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Understanding the unique needs of patients seen in clinic versus at home can help palliative care (PC) teams choose how to maximize available resources., Objectives: To compare the characteristics and PC needs of patients seen by PC teams in clinic versus at home., Methods: We analyzed data from the Palliative Care Quality Network between August 2016 and September 2019 and compared demographics, diagnosis, reason for referral, PC needs, functional status, self-reported symptoms, and patient-reported quality of life., Results: Compared to patients receiving PC in clinic, patients receiving PC at home were more likely to be of age 80 years or older (odds ratio [OR] 7.5, 95% CI 5.0, 10.9, P < 0.0001), have lower functional status (mean Palliative Performance Scale score 53% vs. 68%, P < 0.0001), and were less likely to screen positive for needing pain management (OR 0.31, 95% CI 0.22, 0.42, P < 0.0001) or other symptom management (OR 0.61, 95% CI 0.41, 0.90, P = 0.01). Patients receiving care at home were more likely to be referred for care planning (goals of care discussions or advance care planning) (OR 11.5, 95% CI 8.3, 16.0 P < 0.0001) and patient/family support (OR 5.9, 95% CI 4.2, 8.3, P < 0.0001)., Conclusion: Patients seen by PC teams at home had worse function and were more likely to be referred for care planning, while patients seen in clinic had more PC needs related to pain and symptom management. Despite these differences, both populations have significant PC needs that support routine assessment and require appropriately staffed interdisciplinary teams to address these needs., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

In the setting of the COVID-19 pandemic as well as the recognition of systemic racism in our institutions, the symptom management, emotional/psychological support and advance care planning at the core of palliative care-once considered "an extra layer of support" -have been revealed as instrumental to individuals, families, communities, and countries facing the threat of the global pandemic. In this article, we outline the primary palliative care education efforts of one palliative care education center (The MERI Center at UCSF/Mt Zion campus) and detail the critical adjustments necessary and opportunities found in the COVID crisis.

Background: Although clinic-based palliative care (PC) services have spread in the United States, little is known about how they function, and no studies have examined clinics that predominantly serve safety net populations. Objectives: To describe the PC clinics operating in safety net institutions in California. Design: Survey completed by PC program leaders Setting/Subjects: PC programs in California, USA, safety net medical centers. Measurements: Descriptive statistics regarding staffing, clinic processes, patients served, and finances. Results: Twelve of 15 programs responded; 10 clinics that met inclusion criteria. All 10 programs use multiple disciplines to deliver care. Average full-time equivalent (FTE) used to staff an average of 2.75 half-day clinics per week includes 0.69 physician FTE, 0.51 nurse practitioner FTE, 1.37 nurse FTE, 0.79 social worker FTE, and 0.52 chaplain FTE. Clinic session schedules include an average of 1.88 new patient appointment slots (standard deviation [SD] = 0.44) and four follow-up appointment slots (SD = 1.95). The nine programs that reported on clinic volumes see 1081 patients annually combined, with an annual average of 120 (SD = 48.53) per program. Encounters per patient averaged 3.04 (SD = 1.59; eight programs reporting). All reported offering seven core PC services: pain/symptom management, comprehensive assessment, care coordination, advance care planning, PC plan of care, emotional support, and social service referrals. An average of 77.4% (SD = 26.81) of clinic financing came from the health systems. Conclusions: Our respondents report using an interdisciplinary team approach to deliver guideline-concordant specialty PC. More research is needed to understand the most effective and efficient staffing models for meeting the PC needs of the safety net population.

The article collates the narratives of experiences of the international faculty who mentored the quality improvement teams from India since 2017., Competing Interests: There are no conflicts of interest., (© 2021 Published by Scientific Scholar on behalf of Indian Jounal of Palliative Care.)

Background: Few qualitative studies of cancer patients' everyday experiences with pain exist within the large body of cancer pain research. Longitudinal qualitative studies are particularly sparse, and no studies have qualitatively described patients' pain experience over time during participation in a self-management intervention., Objective: To longitudinally describe patients' pain experiences during a 10-week pain self-management intervention., Methods: This qualitative study was embedded in a randomized controlled trial of a psychoeducational pain management intervention. The data consisted of transcribed audio recordings of each intervention session. An emergent, interpretive approach was used in this longitudinal qualitative analysis., Results: Forty-two adult patients were included. The analysis revealed the strikingly dynamic nature of individual patient's pain experiences. Multiple facets of pain contributed to its dynamic nature, including pain in changing locations, co-occurring sources of pain, and varying patterns of pain intensity over time. For individual patients, the cumulative effect of these multiple facets resulted in a phenomenon we termed "complex pain dynamics.", Conclusion: The results contribute to knowledge about the dynamic nature of cancer patients' pain experiences over a relatively short period. They suggest the need for a new paradigm for management of pain in cancer patients and raise questions about the interpretation of randomized controlled trial results in the absence of qualitative data., Implications for Practice: Frequent assessments and reassessments of pain are needed in cancer patients with the ongoing development of highly individualized self-management strategies. A large repertoire of interventions is needed to effectively manage pain in cancer patients over time., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Telemedicine visits reduce the physical and financial burdens associated with in-person appointments, especially for patients with serious illness. Little is known about patient and caregiver preferences regarding telemedicine visit timing and the discussion of sensitive topics by telemedicine. Objective: To characterize the experience of patients with serious illness and their caregivers receiving palliative care (PC) by telemedicine. Design: Mixed-methods telephone survey. Setting/Subjects: Patients and family caregivers who had at least one telemedicine visit with the outpatient PC team at our urban academic medical center. Results: A total of 35 patients and 15 caregivers were surveyed. Patient mean age was 61 years, 49% had cancer, and 86% were Caucasian. Caregiver mean age was 62 years. Mean satisfaction with PC telemedicine visits was 8.9 out of 10 for patients; 8.8 for caregivers. Patients (97%) and caregivers (100%) felt comfortable discussing sensitive topics over video. Participants felt telemedicine was an acceptable format to discuss most sensitive topics but 53% of caregivers preferred to receive bad news in person. Participants valued the convenience of telemedicine; they had concerns about rapport building and desired a more user-friendly telemedicine platform. Conclusions: Patients with serious illness and their caregivers rated telemedicine visits highly and felt comfortable discussing sensitive topics by video. Concerns included rapport building and telemedicine platform setup and quality. The rapid growth of telemedicine during coronavirus disease 2019 creates an imperative for research to understand the impact on the quality of care and mitigate any negative effects of telemedicine within a diverse population of patients., Competing Interests: No competing financial interests exist., (© Brook Calton et al., 2020; Published by Mary Ann Liebert, Inc.)

Purpose: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer., Methods: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed., Results: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer., Conclusions: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.

The Healer's Art curriculum (HART) is one of the best-known educational strategies to support medical student professional identity formation. HART has been widely used as an elective curriculum. We evaluated students' experience with HART when the curriculum was required. All one hundred eleven members of the class of 2019 University of New Mexico School of Medicine students were required to enroll in HART. We surveyed the students before and after the course to assess its self-reported impact on key elements of professional identity formation such as empathy towards patients and peers, commitment to service, and burnout. A majority of students (n=53 of 92, 57.6%) reported positive effects of the course on their empathy towards other students. This finding was significantly associated with self-reported willingness to have elected the course had it not been required. One-half of respondents (n=46 of 92, 50.0%) reported positive effects on their empathy towards future patients. At least one-quarter to one-third of respondents reported positive influences on commitment to service, conceptions about being a physician, and self-perceived burnout. Students report benefits on their professional identity formation after participating in a required course on humanism. Empathy-building among peers is one valuable outcome of such curricula.

Context: Although constipation is a common symptom in oncology patients, it often goes unrecognized and untreated. In addition, little is known about characteristics associated with interindividual differences in constipation severity., Objectives: To describe prevalence, characteristics, and management of constipation; evaluate interindividual differences in constipation severity over 10 weeks; and identify demographic, clinical, and symptom characteristics associated with higher constipation severity scores., Methods: In this prospective, longitudinal study, 175 oncology patients with unrelieved pain were recruited from eight outpatient cancer settings in the U.S. Patients completed demographic and symptom questionnaires at enrollment. Constipation severity was evaluated over 10 weeks using the Constipation Assessment Scale (CAS). Hierarchical linear modeling was used to identify characteristics associated with higher CAS scores., Results: At enrollment, 70.1% of the patients reported constipation [i.e., CAS score of >2; mean CAS score: 3.72 (±3.11)]. While over the first week of the study patients used one to two constipation treatments per day, a large amount of interindividual variability was found in CAS scores. Higher percentage of days with no bowel movement, higher number of constipation treatments, higher state anxiety scores, and higher analgesic side effects scores were associated with higher CAS scores at enrollment. Higher percentage of days with no bowel movement was associated with interindividual differences in the trajectories of constipation., Conclusion: Our findings underscore the high prevalence of and large amount of interindividual variability in constipation severity. The characteristics associated with worse CAS scores can assist clinicians to identify high-risk patients and initiate prompt interventions., (Copyright © 2019. Published by Elsevier Inc.)

Background: People with heart failure (HF) have high morbidity and mortality and may benefit from palliative care (PC). Objective: To pilot a randomized, clinical trial of a PC intervention for people with HF. Design: Participants were randomized to usual care (UC) or intervention (UC plus specialty PC) between January 2012 and December 2013. The initial PC consultation was conducted in-hospital, with six additional contacts from the PC team over six months. Setting/Subjects: The study was undertaken in a large, urban, academic medical center with patients ( n  = 30) with New York Heart Association HF Class II-IV. Measurements: Patients completed a survey at baseline, three and six months, assessing pain, dyspnea, depression, and quality of life (QoL). Results: Although there were significant improvements in mean scores from baseline to six months for pain (4.3 vs. 2.4, p  = 0.05), dyspnea (3.9 vs. 2.2, p  = 0.03), and QoL (59.2 vs. 42.7, p  = 0.001), there were no differences between study groups over time. On average, participants in the intervention group received 5 out of 6 contacts and were satisfied with the intervention. Conclusions: The intervention was well accepted by patients, safe, and feasible. Our findings suggest that PC interventions for people with HF should match the PC needs of the patient. Given the trajectory of HF, studies may need to recruit outpatients and follow patients for a longer period to fully evaluate the impact of PC interventions. Clinical trials Identifier: NCT01461681.

In recent years, the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Adult Cancer Pain have undergone substantial revisions focusing on the appropriate and safe prescription of opioid analgesics, optimization of nonopioid analgesics and adjuvant medications, and integration of nonpharmacologic methods of cancer pain management. This selection highlights some of these changes, covering topics on management of adult cancer pain including pharmacologic interventions, nonpharmacologic interventions, and treatment of specific cancer pain syndromes. The complete version of the NCCN Guidelines for Adult Cancer Pain addresses additional aspects of this topic, including pathophysiologic classification of cancer pain syndromes, comprehensive pain assessment, management of pain crisis, ongoing care for cancer pain, pain in cancer survivors, and specialty consultations.

The field of telehealth is rapidly growing and evolving across medical specialties and health care settings. While additional data are needed, telepalliative care (the application of telehealth technologies to palliative care) may help address important challenges inherent to our specialty, such as geography and clinician staffing; the burden of traveling to brick-and-mortar clinics for patients who are symptomatic and/or functionally limited; and the timely assessment and management of symptoms. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. This article, created by experts in telehealth and palliative care, provides a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.

Background:: Engaging patients in advance care planning (ACP) is challenging but crucial to improving the quality of end-of-life care. Group visits and multiple patient-clinician interactions may promote advance directive (AD) completion., Objective:: Facilitate ACP discussions with patients and caregivers and the creation of notarized AD's at a comprehensive cancer center., Design:: Two-session, nurse-led ACP workshops for patients and their family caregivers., Setting/participants:: The workshop was offered to patients with cancer at a comprehensive cancer center and their family caregivers., Measurements:: Validated 4-question ACP engagement survey, creation of a notarized AD by end of the workshop, and semistructured interviews., Results:: Thirty-five patients participated in 10 workshops held March 2017 to February 2018. Median age was 52. Of 35, 24 (68.5%) patients completed pre- and postworkshop evaluation surveys. Mean preworkshop ACP readiness was 3.64 of 5; postworkshop readiness increased to 4.26 of 5 ( P = .001). Of 26, 17 (65.4%) of the patients who attended both workshop sessions had a new notarized AD scanned into the electronic medical record at the completion of the workshop series. Three family caregivers completed and had their own ADs notarized. Patient and family member response was overwhelmingly positive, with participants citing opportunities for group discussion and inclusion of family caregivers as important., Conclusions:: The ACP workshop was well received by participants and increased ACP readiness, discussion, and completion. Attendance at the workshop was low and barriers to attending workshops must be explored.

Background: Outpatient palliative care (PC) has been shown to positively impact quality of life and decrease healthcare utilization, but there are limited data describing what activities render these benefits., Objective: Describe the topics addressed by an outpatient PC team during scheduled visits., Design: Longitudinal cohort study., Setting: The Symptom Management Service, an ambulatory PC program at an academic comprehensive cancer center., Measurement: Between March 23, 2015 and June 14, 2016, outpatient PC providers completed a checklist after each clinic visit, documenting topics covered during the visit., Results: During the study period, 1243 visits were conducted for 577 unique patients. Symptom management was the topic most commonly addressed during initial visits (in 92% of visits), followed by an introduction of PC (69%), support for family caregivers (47%), and communication with other clinicians (38%). Providers also supported patients to understand their prognosis (28%), treatment options (36%), and to make care decisions (22%). Formal advance care planning activities occurred infrequently, however, including designation of a Durable Power of Attorney for Healthcare (26%), completion of an advance directive or Provider Orders for Life-Sustaining Treatment form (10%), and discussing hospice (8%). Follow-up visits were dominated by symptom management (93%) and caregiver support (27%)., Conclusions: Symptom management, support for family and caregivers, and care coordination are the most common activities that occurred during scheduled outpatient PC visits. These findings can guide developing PC practices, as well as clinicians who provide primary PC.

Well-designed, randomized trials demonstrate that outpatient palliative care improves symptom burden and quality of life (QOL) while it reduces unnecessary health care use in patients with cancer. Despite the strong evidence of benefit and ASCO recommendations, implementation of outpatient palliative care, especially in community oncology settings, faces considerable hurdles. This article, which is based on published literature and expert opinion, presents practical strategies to help oncologists make a strong clinical and fiscal case for outpatient palliative care. This article outlines key considerations for how to build an outpatient palliative care program in an institution by (1) defining the scope and benefits; (2) identifying strategies to overcome common barriers to integration of outpatient palliative care into cancer care; (3) outlining a business case; (4) describing successful models of outpatient palliative care; and (5) examining important factors in design and operation of a palliative care clinic. The advantages and disadvantages of different delivery models (e.g., embedded vs. independent) and different methods of referral (triggered vs. physician discretion) are reviewed. Strategies to make the case for outpatient palliative care that align with institutional values and/or are supported by local institutional data on cost savings are included.

Context: Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce., Objectives: The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms., Methods: Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory., Results: From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC)., Conclusion: Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Evidence documents the benefits of palliative care to ameliorate the symptoms of pancreatic cancer as well as those from its treatment. Professional organizations now recommend palliative care for all patients with pancreatic cancer early in the course of illness and concurrently with active treatment. Scrupulous symptom management as well as sensitive communication and advance care planning allow oncologists to provide "primary palliative care" and to care well for patients with pancreatic cancer throughout the course of their illness.

Background: Patients with advanced cancer experience significant symptoms, ineffective treatments, and hospice underutilization. Home-based palliative care (HBPC) may fill a service gap for patients who require intensive home management, but are not enrolled in hospice. Even as data emerge on the utilization impacts of HBPC, other impacts are not as well known., Methods: We describe findings of a pilot project in HBPC, Community Bridges (CB), for patients with advanced cancer. We assessed baseline symptom severity, caregiver burden, patient and caregiver program satisfaction, and CB team experience., Results: Seventeen patients were seen. Baseline patient symptom burden and caregiver burden were high. Half of patients died within six months of enrollment. Patients and caregivers reported high program satisfaction and that CBs filled a gap in care. CB providers often served in the role as crisis managers and as trusted reporters for treating oncologists., Conclusions: CBs filled an unmet need for patients with advanced, metastatic cancer who desired ongoing cancer treatment, but were also in need of intensive end-of-life home services.

Background: ASCO and IOM recommend palliative care (PC) across health care settings for patients with serious illnesses, including cancer. This study provides an overview of the current availability, structure, and basic quality of PC services within NCCN Member Institutions., Methods: A PC survey was developed by NCCN staff and a working group of PC experts from 11 NCCN Member Institutions under the auspices of the NCCN Best Practices Committee. The survey was piloted and refined by 3 working group members and sent electronically to all 26 NCCN Member Institutions. NCCN staff and working group leaders analyzed the survey data., Results: A total of 22 of 26 institutions responded (85%). All respondents (100%) reported an inpatient PC consult service (staffed by an average of 6.8 full-time equivalents [FTEs], seeing 1,031 consults/year with an average length of stay [LOS] of 10 days). A total of 91% of respondents had clinic-based PC (with an average of 469 consults/year, staffed by an average of 6.8 FTEs, and a 17-day wait time). For clinics, a comanagement care delivery model was more common than strict consultation. Home-based PC (23%) and inpatient PC units (32%) were less prevalent. Notably, 80% of institutions reported insufficient PC capacity compared with demand. Across PC settings, referrals for patients with solid tumors were more common than for hematologic malignancies. Automatic or "triggered" referrals were rare. The most common services provided were symptom management (100%) and advance care planning (96%). Most programs were funded through fee-for-service billing and institutional support. Partnerships with accountable care organizations and bundled payment arrangements were infrequent. PC program data collection and institutional funding for PC research were variable across institutions., Conclusions: Despite the prevalence of PC inpatient and clinic services among participating NCCN Member Institutions, PC demand still exceeds capacity. Opportunities exist for expansion of home-based PC and inpatient PC units, optimizing referrals, research, and payer collaborations., (Copyright © 2016 by the National Comprehensive Cancer Network.)

Background: Palliative care is recommended along with oncologic care for patients with advanced cancer. However, there are limited data about how the timing of palliative care affects quality and costs., Objective: Comparison of health care utilization and care quality for patients with cancer who died having received early versus late palliative care., Design: Analysis of cancer registry, administrative, and billing databases., Setting/subjects: Patients with cancer who died having received specialty palliative care consultation., Measurements: Comparing early (more than 90 days prior to death) versus late (less than 90 days prior to death) palliative care, outcome measures included rates of health care utilization and health care costs., Results: Among 922 decedents, 297 (32.2%) had palliative care referrals, with 93 (10.1%) receiving early referrals and 204 (22.1%) late referrals. Compared to patients receiving late palliative care, early palliative care patients had lower rates of inpatient (33% versus 66%, p < 0.01), ICU (5% versus 20%, p < 0.01), and ED utilization (34% versus 54%, p = 0.04) in the last month of life. Direct costs of inpatient care in the last 6 months of life for patients with early palliative care were lower compared to late palliative care ($19,067 versus $25,754, p < 0.01), while direct outpatient costs were similar ($13,040 versus $11,549, p = 0.85). Early palliative care was predominantly delivered in the outpatient setting (84%) while late palliative care was mostly delivered in the hospital (82%)., Conclusions: Early palliative care is associated with less intensive medical care, improved quality outcomes, and cost savings at the end of life for patients with cancer. Despite recommendations that early palliative care be offered to all patients with metastatic cancer, palliative care services remain underutilized.

Background: Symptoms of patients with advanced cancer have been extensively studied, but less attention has been paid to the symptomatology of patients with localized disease. We compared the symptom burden of outpatients with cancer, either metastatic or localized disease, seen in a palliative care comanagement clinic., Methods: We conducted a retrospective, cross-sectional study assessing patient symptoms with multiple patient surveys, including a modified Edmonton Symptom Assessment Survey (to assess pain, fatigue, anxiety, depression, and nausea), along with a spiritual well-being screen and questions about relationships and quality of life. Consecutive patients at a comprehensive cancer center completed the surveys prior to their first visit to an outpatient palliative care clinic providing palliative care concurrently with the patients' oncologic treatments. Patients were referred by their oncologist, radiation oncologist, oncologic surgeon, or primary care physician without respect to their stage or prognosis. Statistical analyses used were χ(2), Fisher's exact test, Student's t test, and multivariate linear regression. Significance was taken as p<0.05., Results: Two hundred and five patients were included in this study. One hundred and twenty-seven patients (62%) had metastatic cancer and 78 (38%) had nonmetastatic cancer. The characteristics of the two study groups were similar with regard to age, sex, ethnicity, language, religion, partnership status, and insurance status. Patients with metastatic disease and localized disease had similar mean symptom burden and mean individual symptom intensity for all symptoms evaluated except for nausea, which was worse in patients with metastatic disease (3.4 versus 2.5, p=0.0028). Nausea was also worse in younger patients., Conclusion: Among patients referred to a cancer center outpatient palliative care clinic, symptom burden is similar in patients with localized and metastatic disease. Even patients with relatively good prognoses may nevertheless have significant symptom burdens in physical, emotional, and existential domains. The palliative care needs of all patients must be assessed, regardless of stage or prognosis.

Theory: Elective courses, by definition, allow medical students to self-select for participation in the class. In a small-group learning setting, students uninterested or not ready for a particular learning topic might change the educational experience ("poison the well") for those students most interested in the topic. It is not known how medical students required to take a course in humanism (that they otherwise would not have elected to take) might be impacted by the course or how their presence might affect students originally interested in the course., Hypotheses: Medical students in a required course on humanism and values in medicine will have different experiences based on whether a particular student might have or not have elected to enroll in the course. Students uninterested in taking a course in humanism and values, but required to enroll, will limit the benefit of the course for those students originally interested in participating., Method: In 2012, all 1st-year students at a U.S. medical school were required to take the Healer's Art, an elective on professional values and humanism offered at more than 90 other schools in the United States and internationally. Students completed pre/postcourse surveys assessing emotional exhaustion, work engagement, positive emotions, and cynicism. We analyzed differences between those who would have elected to take the course (Elective students) and those who would not have elected to take it (Required students)., Results: Elective students did not differ from Required students in baseline demographic characteristics, emotional exhaustion, work engagement, or positive emotions. At baseline, Elective students did report feeling safer to talk openly, a greater sense of community, and higher levels of cynicism. Over time, there were no differences in course evaluations or outcomes between Elective and Required students., Conclusions: Required students do not differ greatly from those who would have elected to take Healer's Art, and all students appear to have similar experiences in the course.

Background: Although much evidence has accumulated demonstrating its benefit, relatively little is known about outpatient palliative care in patients with cancer., Methods: This paper reviews the literature and perspectives from content experts to describe the current state of outpatient palliative care in the oncology setting and current areas of innovation and promise in the field., Results: Evidence, including from controlled trials, documents the benefits of outpatient palliative care in the oncology setting. As a result, professional medical organizations have guidelines and recommendations based on the key role of palliative care in oncology. Six elements of the practice sit at the frontier of outpatient oncology palliative care, including the setting and timing of palliative care integration into outpatient oncology, the relationships between primary and specialty palliative care, quality and measurement, research, electronic and technical innovations, and finances., Conclusions: Evidence of clinical and health care system benefits supports the recommendations of professional organizations to integrate palliative care into the routine treatment of patients with advanced cancer.

Purpose: To characterize the effect of palliative care provided concurrently with usual urologic care for patients with bladder cancer undergoing cystectomy., Materials and Methods: Prospective, 6-month, serial cohort study comparing 33 participants receiving usual care with cystectomy for muscle-invasive bladder cancer, with 30 participants also receiving concurrent palliative care. Patients and family caregivers completed validated symptom assessment and satisfaction surveys preoperatively and at 2, 4, and 6 months postoperatively., Results: The intervention group saw improvements in most symptom measures over the 6 months following cystectomy compared with the control group. Depression and anxiety decreased over the 6-month period for the intervention group patients but increased over this time among the controls (P = 0.01). Fatigue decreased to a minimum for the intervention group participants at 4 months, whereas it peaked at this time for control participants (0.002). Quality-of-life and posttraumatic growth scores followed a similar pattern, with scores peaking at 4 months for the intervention group whereas controls reported their lowest scores at this time (P = 0.01 and P = 0.03, respectively). Changes in pain scores did not reach statistical significance. Neither family caregiver burden nor patient satisfaction showed statistically significant changes over time., Conclusions: Patients who received concurrent palliative care in addition to usual urologic care following radical cystectomy for muscle-invasive bladder cancer had better outcomes, including improved fatigue, depression, quality of life, and posttraumatic growth. Although further research on this topic is needed, our results suggest that providing palliative care services in addition to usual urologic care for patients with bladder cancer may significantly reduce postoperative symptoms., (Copyright © 2015 Elsevier Inc. All rights reserved.)

Purpose: Spiritual well-being is threatened by cancer, but its correlation with other illness symptoms and the efficacy of palliative care (PC) to ameliorate spiritual suffering are not well understood., Methods: We conducted a retrospective study using a convenience sample of oncology patients at a comprehensive cancer center who received concurrent oncologic and palliative care between 2008 and 2011 and completed ESAS, QUAL-E, and Steinhauser Spiritual well-being survey questions was conducted. Descriptive, correlation, and t test statistics., Results: Eight hundred eighty-three patients surveyed had an average age of 65.6 years, with 54.1 % female, 69.3 % white, and 49.3 % married. Half (452, 51.2 %) had metastatic disease. Religious affiliation was reported as Christian by 20.3 %, Catholic by 18.7 %, and "none" by 39.0 %. Baseline spiritual well-being was not significantly correlated with age, gender, race, cancer stage, marital status, insurance provider, or having a religious affiliation. Greater spiritual well-being was correlated with greater quality of life (