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The lack of integration between public health approaches, cancer care and palliative and end-of-life care in the majority of health systems globally became strikingly evident in the context of the coronavirus disease 2019 (COVID-19) pandemic. At the same time, the collapse of the boundaries between these domains imposed by the pandemic created unique opportunities for intersectoral planning and collaboration. While the challenge of integration is not unique to oncology, the organisation of cancer care and its linkages to palliative care and to global health may allow it to be a demonstration model for how the problem of integration can be addressed. Before the pandemic, the large majority of individuals with cancer in need of palliative care in low- and middle-income countries and the poor or marginalised in high-income countries were denied access. This inequity was highlighted by the COVID-19 pandemic, as individuals in impoverished or population-dense settings with weak health systems have been more likely to become infected and to have less access to medical care and to palliative and end-of-life care. Such inequities deserve attention by government, financial institutions and decision makers in health care. However, there has been no framework in most countries for integrated decision-making that takes into account the requirements of public health, clinical medicine and palliative and end-of-life care. Integrated planning across these domains at all levels would allow for more coordinated resource allocation and better preparedness for the inevitability of future systemic threats to population health., Highlights • Integration across public health, clinical medicine and palliative care is needed. • Oncology, palliative care and global health could be a demonstration model. • The pandemic is a dramatic reminder of the need for such integration at all levels.

PURPOSE: We examined the change in outpatient PC services at US cancer centers over the past decade. METHODS: Between April and August 2018, we surveyed all National Cancer Institute-designated cancer centers (NCI-CCs) and a random sample of 1252 non-NCI-CCs. Two surveys used previously in a 2009 national study (Hui et al. JAMA 2009) were sent to each institution: a 22-question cancer center executive survey regarding PC infrastructure and attitudes toward PC, and an 82-question PC program leader survey regarding detailed PC structures and processes. Survey findings from 2018 were compared to 2009 data from 101 cancer center executives and 96 PC program leaders. RESULTS: The overall response rate was 140/203 (69%) for the cancer center executive survey and 123/164 (75%) for the PC program leader survey. Among NCI-CCs, a significant increase in outpatient PC clinics was observed between 2009 and 2018 (59% v. 95%; OR=12.3, 95% CI 3.2–48.2; P

Background: Several novel targeted therapies seem to improve the outcome of acute myeloid leukemia (AML) patients. Nonetheless, the 5-year survival rate remains below 40%, and the trajectory of the disease remains physically and emotionally challenging, with little time to make relevant decisions. For patients with advanced solid tumors, the integration of early palliative care (EPC) with standard oncologic care a few weeks after diagnosis has demonstrated several benefits. However, this model is underutilized in patients with hematologic malignancies. Methods: In this article, we analyze the palliative care (PC) needs of AML patients, examine the operational aspects of an integrated model, and review the evidence in favor of EPC integration in the AML course. Results: AML patients have a high burden of physical and psychological symptoms and high use of avoidant coping strategies. Emerging studies, including a phase III randomized controlled trial, have reported that EPC is feasible for inpatients and outpatients, improves quality of life (QoL), promotes adaptive coping, reduces psychological symptoms, and enhances the quality of end-of-life care. Conclusions: EPC should become the new standard of care for AML patients. However, this raises issues about the urgent development of adequate programs of education to increase timely access to PC.

BACKGROUND Health care providers' (HCPs) communication with cancer patients provides both information and support. Younger patient age and greater difficulty accepting support (attachment security) have been linked to poorer communication experiences with HCPs. The present secondary data analysis examined the impact of age group and attachment security on perceived communication problems with HCPs in adults with acute leukemia (AL). METHODS The sample included 95 younger (age

Context Clinicians often rely on documentation to relay information, and this remains the mainstay of interprofessional communication regarding patient care. However, there has been scant research focused on clinicians' documentation of dying in hospital and how this is communicated to other team members in patient charting. Objectives To understand the language used to describe the deterioration and death of patients in an acute academic tertiary care center and to identify whether patient diagnoses or palliative care (PC) involvement was associated with clearer descriptions of this process. Methods We conducted a retrospective chart review of the final admission of 150 patients who died on an inpatient internal medicine unit. Conventional and summative content analysis was performed of the language used to describe, either directly or indirectly, that the patient's death was imminent. Results Of the 150 deaths, the median age was 79.5 (range 22–101), 58% were males, and 69% spoke English. A total of 45% of deaths were from cancer, and 66% occurred with prior PC team involvement. There was no documentation of the dying process in 18 (12%) charts. In the remainder, clinicians' documentation of imminent death fell into three categories: 1) identification of the current state using specific labels; for example, dying (24.7%) or end of life (15.3%), or less specific language, unwell or doing poorly (6.0%); 2) predicting the future state using specific or more vague predictions; for example, hours to days (7.3%) or poor or guarded prognosis (26.0%); and 3) using care provided to the patient to imply patient status; for example, PC (49.3%) or comfort care (28.7%). PC involvement, but not a malignant diagnosis, was associated with more frequent use of specific language to describe the current state (P = 0.004) or future state (P = 0.02). Conclusion Death and dying in hospital is inadequately documented and often described using unclear and vague language. PC involvement is associated with clearer language to describe this process.

Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care into oncology practice for patients with advanced cancer. The question is no longer whether palliative care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing. These questions are particularly relevant given the scarcity of palliative care resources internationally. In this state-of-the-science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist palliative care on various health outcomes. Then, conceptual models are provided to support team-based, timely, and targeted palliative care. Team-based palliative care allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely palliative care, at its best, is preventive care to minimize crises at the end of life. Targeted palliative care involves identifying the patients most likely to benefit from specialist palliative care interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse-led palliative care, primary palliative care provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize palliative care to provide the right level of intervention, for the right patient, in the right setting, at the right time. CA Cancer J Clin. 2018;680:00-00. 2018 American Cancer Society, Inc.

Contact with bereaved caregivers is not standard practice among cancer physicians, and little is known about its impact on caregivers.Our aim was to describe the experiences and opinions of caregivers regarding bereavement contact from healthcare providers (HCP).Semistructured qualitative interviews were conducted with 61 bereaved caregivers.Bereaved caregivers of advanced cancer patients who had completed a randomized controlled trial of an early palliative care intervention were approached one to five years after the patient's death. Caregivers completed qualitative interviews from April 2012 to March 2015 after completion of quantitative measures.In semistructured interviews, bereaved caregivers were asked to describe the contact they received from HCP after the patient's death and their opinions about bereavement contact. We used thematic analysis informed by grounded theory to code and analyze the data.Of 60 caregivers included in the study, 30 (50%) received bereavement contact. There were no thematic differences between trial arms. The themes "contact reflects caring," "contact offers support," and "contact facilitates closure" were prominent among those who were contacted. "Contact is a courtesy," "contact is not always necessary," and "caregiver-initiated contact" were most evident among those who were not contacted. Overall, contact was appreciated by those who received it; for those who did not, reactions included rationalization, ambivalence, and regret. No negative consequences of contact were reported.Bereavement contact is well received and may be missed if not provided. These data support integration of bereavement contact into routine supportive care for caregivers.

Purpose Individuals with advanced cancer experience substantial distress in response to disease burden and impending mortality. Managing Cancer And Living Meaningfully (CALM) is a novel, brief, manualized psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. We conducted a randomized controlled trial to compare CALM with usual care (UC) in this population. Methods Patients with advanced cancer were recruited from outpatient oncology clinics at a comprehensive cancer center into an unblinded randomized controlled trial. Permuted block randomization stratified by Patient Health Questionnaire-9 depression score allocated participants to CALM plus UC or to UC alone. Assessments of depressive symptoms (primary outcome), death-related distress, and other secondary outcomes were conducted at baseline, 3 months (primary end point), and 6 months (trial end point). Analyses were by intention to treat. Analysis of covariance was used to test for outcome differences between groups at follow-up, controlling for baseline. Mixed-model results are reported. Results Participants (n = 305) were recruited between February 3, 2012, and March 4, 2016, and randomly assigned to CALM (n = 151) or UC (n = 154). CALM participants reported less-severe depressive symptoms than UC participants at 3 months (Δ = 1.09; P = .04; Cohen’s d = 0.23; 95% CI, 0.04 to 2.13) and at 6 months (Δ = 1.29; P = .02; d = 0.29; 95% CI, 0.24 to 2.35). Significant findings for greater end-of-life preparation at 6 months also favored CALM versus UC. No adverse effects were identified. Conclusion Findings suggest that CALM is an effective intervention that provides a systematic approach to alleviating depressive symptoms in patients with advanced cancer and addresses the predictable challenges these patients face.

Performance status measures are increasingly completed by patients in outpatient cancer settings, but are not well validated for this use.We assessed performance of a patient-reported functional status measure (PRFS, based on the Eastern Cooperative Oncology Group [ECOG]), compared with the physician-completed ECOG, in terms of agreement in ratings and prediction of survival.Patients and physicians independently completed five-point PRFS (lay version of ECOG) and ECOG measures on first consultation at an oncology palliative care clinic. We assessed agreement between PRFS and ECOG using weighted Kappa statistics, and used linear regression to determine factors associated with the difference between PRFS and ECOG ratings. We used the Kaplan-Meier method to estimate the patients' median survival, categorized by PRFS and ECOG, and assessed predictive accuracy of these measures using the C-statistic.For the 949 patients, there was moderate agreement between PRFS and ECOG (weighted Kappa 0.32; 95% CI: 0.28-0.36). On average, patients' ratings of performance status were worse by 0.31 points (95% CI: 0.25-0.37, P 0.0001); this tendency was greater for younger patients (P = 0.002) and those with worse symptoms (P 0.0001). Both PRFS and ECOG scores correlated well with overall survival; the C-statistic was higher for the average of PRFS and ECOG scores (0.619) than when reported individually (0.596 and 0.604, respectively).Patients tend to rate their performance status worse than physicians, particularly if they are younger or have greater symptom burden. Prognostic ability of performance status could be improved by using the average of patients and physician scores.

Purpose The symptom burden of acute myeloid leukemia (AML) and its treatment can accelerate physical deconditioning and impair mobility and quality of life. In the present study, we explore the subjective experience of functional capacity in people living with AML. Methods A secondary qualitative analysis was performed on a subset of interviews (n = 21) obtained from an observational cohort study of people with acute leukemia. Conventional content analysis was employed to identify key themes and concepts. Results Participants valued their physical function to the extent that it was required to pursue personally meaningful activities and interests. We identified Meaningful Activity as an overarching goal of participants. Three interrelated themes captured the obstacles participants reported facing when attempting to realize this goal: Compromised Body, Threatened Identity, and Shrinking World. Adaptation was common across themes, representing the strategies employed to overcome such challenges. Themes were consistent across participants, despite the variability in disease states at the time of the interview. Conclusions Dynamic interactions between physical, psychological, and environmental factors affect the pursuit and achievement of meaningful activity among people living with AML. It may be important to consider personal incentives when designing interventions for physical rehabilitation in this patient population.

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (pConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

IntroductionCanadians have had legal access to medical assistance in dying (MAiD) since 2016. However, despite substantial overlap in populations who request MAiD and who require palliative care (PC) services, policies and recommended practices regarding the optimal relationship between MAiD and PC services are not well developed. Multiple models are possible, including autonomous delivery of these services and formal or informal coordination, collaboration or integration. However, it is not clear which of these approaches are most appropriate, feasible or acceptable in different Canadian health settings in the context of the COVID-19 pandemic and in the post-pandemic period. The aim of this qualitative study is to understand the attitudes and opinions of key stakeholders from the government, health system, patient groups and academia in Canada regarding the optimal relationship between MAiD and PC services.Methods and analysisA qualitative, purposeful sampling approach will elicit stakeholder feedback of 25–30 participants using semistructured interviews. Stakeholders with expertise and engagement in MAiD or PC who hold leadership positions in their respective organisations across Canada will be invited to provide their perspectives on the relationship between MAiD and PC; capacity-building needs; policy development opportunities; and the impact of the COVID-19 pandemic on the relationship between MAiD and PC services. Transcripts will be analysed using content analysis. A framework for integrated health services will be used to assess the impact of integrating services on multiple levels.Ethics and disseminationThis study has received ethical approval from the University Health Network Research Ethics Board (No 19-5518; Toronto, Canada). All participants will be required to provide informed electronic consent before a qualitative interview is scheduled, and to provide verbal consent prior to the start of the qualitative interview. Findings from this study could inform healthcare policy, the delivery of MAiD and PC, and enhance the understanding of the multilevel factors relevant for the delivery of these services. Findings will be disseminated in conferences and peer-reviewed publications.

ObjectivesPatients who do not attend outpatient palliative care clinic appointments (‘no-shows’) may have unmet needs and can impact wait times. We aimed to describe the characteristics and outcomes associated with no-shows.MethodsWe retrospectively reviewed new no-show referrals to the Princess Margaret Cancer Centre Oncology Palliative Care Clinic (OPCC) in Toronto, Canada, between January 2017 and December 2018, compared with a random selection of patients who attended their first appointment, in a 1:2 ratio. We collected patient information, symptoms, performance status (Eastern Cooperative Oncology Group (ECOG) and outcomes. Univariable and multivariable logistic regression analyses were used to identify significant factors.ResultsCompared with those who attended (n=214), no-shows (n=103), on multivariable analysis, were at higher odds than those who attended of being younger (OR 0.98, 95% CI 0.96 to 1.00, p=0.019), living outside Toronto (OR 2.67, 95% CI 1.54 to 4.62, pConclusionCompared with patients who attended, no-shows lived further from the OPCC, were younger, and had a poorer ECOG. Strategies such as virtual visits should be explored to reduce no-shows and enable attendance at OPCCs.

IntroductionCommunicable disease epidemics and pandemics magnify the health inequities experienced by marginalised populations. People who use substances suffer from high rates of morbidity and mortality and should be a priority to receive palliative care, yet they encounter many barriers to palliative care access. Given the pre-existing inequities to palliative care access for people with life-limiting illnesses who use substances, it is important to understand the impact of communicable disease epidemics and pandemics such as COVID-19 on this population.Methods and analysisWe will conduct a scoping review and report according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews reporting guidelines. We conducted a comprehensive literature search in seven bibliographical databases from the inception of each database to August 2020. We also performed a grey literature search to identify the publications not indexed in the bibliographical databases. All the searches will be rerun in April 2021 to retrieve recently published information because the COVID-19 pandemic is ongoing at the time of this writing. We will extract the quantitative data using a standardised data extraction form and summarise it using descriptive statistics. Additionally, we will conduct thematic qualitative analyses and present our findings as narrative summaries.Ethics and disseminationEthics approval is not required for a scoping review. We will disseminate our findings to healthcare providers and policymakers through professional networks, digital communications through social media platforms, conference presentations and publication in a scientific journal.

Objective Acute leukemia (AL) is associated with an immediate threat to life, an unpredictable clinical course, and substantial physical suffering. Traumatic stress symptoms that may meet criteria for acute stress disorder (ASD) may be common and disabling in this context, but have received little clinical attention. We investigated the incidence over time and risk factors for traumatic stress symptoms and ASD in the 3 months following diagnosis or relapse of AL. Methods Individuals with AL were recruited at a tertiary cancer center in Canada within one month of diagnosis or relapse. Participants (N = 230) completed self-report measures, including the Stanford Acute Stress Reaction Questionnaire, at baseline and monthly over 3 months. The incidence of traumatic stress symptoms over time was examined, and a generalized logistic model was used to identify factors associated with ASD. Results Participants were 60% male, with a mean age of 48.9 ± 15.2 years. Symptoms of ASD were identified on ≥1 assessment over the study period in 24.4% of participants at baseline and in an additional 12.6% at a subsequent follow-up. Of these, 55.3% reported symptoms on ≥2 assessments. ASD was associated with having young children, being unmarried, acute lymphocytic leukemia, and greater physical symptom burden. Persistent or recurrent ASD was associated with female sex, acute lymphocytic leukemia, greater attachment anxiety, less spiritual well-being, and less satisfactory patient-clinician communication. Conclusions Symptoms of ASD are common and often persist or recur following diagnosis or relapse of AL. Research is urgently needed to determine the impact of interventions to prevent and treat psychological distress in this population.

Objectives Fear of death and dying is common in patients with advanced cancer, but can be difficult to address in clinical conversations. We aimed to show that the experience of death anxiety may be deconstructed into a network of specific concerns and to provide a map of their interconnections to aid clinical exploration. Methods We studied a sample of 382 patients with advanced cancer recruited from outpatient clinics at the Princess Margaret Cancer Centre, Toronto, Canada. Patients completed the 15-item Death and Dying Distress Scale (DADDS). We used item ratings to estimate a regularised partial correlation network of death and dying-related concerns. We calculated node closeness-centrality, clustering and global network characteristics. Results Death-related anxieties were highly frequent, each associated with at least moderate distress in 22%–55% of patients. Distress about ‘Running out of time’ was a central concern in the network. The network was organised into two areas: one about more practical fears concerning the process of dying and another about more psychosocial or existential concerns including relational problems, uncertainty about the future and missed opportunities. Both areas were yet closely connected by bridges which, for example, linked fear of suffering and a prolonged death to fear of burdening others. Conclusions Patients with advanced cancer may have many interconnected death-related fears that can be patterned in individual ways. The bridging links between more practical and more psychosocial concerns emphasise that the alleviation of death anxiety may require interventions that integrate symptom management, advance care planning and psychological treatment approaches.

Pain-related stoicism and cautiousness are theorized to be more prevalent in older than younger patients and to lead to greater pain under-reporting and consequently inadequate pain management in older patients. The Pain Attitudes Questionnaire-Revised (PAQ-R), which measures 5 pain-related stoicism (fortitude, concealment, superiority) and cautiousness (self-doubt, reluctance) factors in chronic pain, can help test this hypothesis in advanced cancer but requires validation. We conducted a psychometric evaluation of the PAQ-R in 155 younger (younger than 60 years) and 114 older (aged 60 years and older) patients with advanced cancer. Participants showed disagreement with self-doubt items and floor effects with the subscale. Confirmatory factor analyses revealed good fit of the PAQ-R's 5 factors to younger and older groups' data but collinearity between fortitude and concealment. Multisample confirmatory factor analyses supported partial scalar invariance between age groups. Few hypothesized age-related differences were observed. Younger patients reported higher superiority scores than older patients. Whereas older patients showed greater fortitude and superiority with lower average pain intensity, younger patients showed greater concealment or fortitude with greater worst and average pain intensity. Furthermore, whereas older patients displayed greater superiority with lower interference in relations with others, younger patients displayed greater concealment and superiority with greater interference in walking ability and greater concealment and self-doubt with more interference in relations with others. Cross-validation of the PAQ-R's factor structure and identification of pathways to the factors and effect on pain-related outcomes using multivariate approaches are warranted. Perspective This article presents the psychometric properties of a measure of 2 particular pain-related attitudes. The measure can help clarify whether these attitudes adversely influence pain reporting in older patients with advanced cancer as hypothesized and, in turn, explain the inadequate pain management frequently reported with this clinical group.

Palliative care can improve quality of life in patients facing life-threatening illnesses by addressing their physical, emotional, spiritual, and practical needs. Research has shown that palliative care initiated early in the disease trajectory improves patients’ mood, quality of life, and even survival. Nevertheless, timely referral and willingness to initiate palliative care are hindered by stigma and the misconception that palliative care is for patients who have exhausted treatment options. Well-designed comics may be useful for addressing complex, stigmatized topics, because they are unintimidating, easy to consume, and relatable to readers. Unsurprisingly, educational comics can teach more effectively than text or verbal instruction. Since palliative care is valued by patients for being a person-centered and patient-led experience, comics may be uniquely suited to educate about this topic by embedding information in the context of an individual patient journey. The comic, currently a work-in-progress, will include a didactic narrative about palliative care and a situational narrative describing the patient experience. Feedback from palliative care patients during the development process will inform visual and narrative design of the comic.

IntroductionPerformance status is an essential consideration for clinical practice and for patient eligibility for clinical trials in oncology. Assessment of performance status is traditionally done by clinicians, but there is an increasing interest in patient-completed assessment. The aim of this systematic review and meta-analysis was to summarise inter-rater concordance between patient and clinician ratings of performance status.MethodsA search strategy was developed and executed in the databases of Ovid MEDLINE, Embase and Cochrane Central Register of Controlled Trials, from inception until 15 August 2019. Articles were eligible for inclusion if there was mention of both (1) use of performance status tool Karnofsky Performance Status (KPS) or Eastern Cooperative Oncology Group Performance Status (ECOG), and (2) assessment of performance status by both clinicians and patients. Pearson correlation coefficients were calculated for each study and were meta-analysed according to a random-effect analysis model. Analyses were conducted using Comprehensive Meta-Analysis (V.3) by Biostat.ResultsSixteen articles were included in our review, reporting on a cumulative sample size of 6619 patients. The quality of evidence was moderate, as determined by the GRADE tool.Concordance ranged from fair to moderate for both the KPS and ECOG tools. The Pearson correlation coefficient was 0.449 for KPS and 0.584 for ECOG.ConclusionsThere is fair to moderate concordance of patient and clinician performance status ratings. Future studies should examine the reasoning behind clinician and patient ratings to better understand discrepancies between ratings.

Objective Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. Methods Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). Results Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. Conclusions Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.

Two guidelines about opioid use in chronic pain management were published in 2017: the Canadian Guideline for Opioids for Chronic Non-Cancer Pain and the European Pain Federation position paper on appropriate opioid use in chronic pain management. Though the target populations for the guidelines are the same, their recommendations differ depending on their purpose. The intent of the Canadian guideline is to reduce the incidence of serious adverse effects. Its goal was therefore to set limits on the use of opioids. In contrast, the European Pain Federation position paper is meant to promote safe and appropriate opioid use for chronic pain. The content of the two guidelines could have unintentional consequences on other populations that receive opioid therapy for symptom management, such as patients with cancer. In this article, we present expert opinion about those chronic pain management guidelines and their impact on patients with cancer diagnoses, especially those with histories of substance use disorder and psychiatric conditions. Though some principles of chronic pain management can be extrapolated, we recommend that guidelines for cancer pain management should be developed using empirical data primarily from patients with cancer who are receiving opioid therapy.

BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital. METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians’ billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care. RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care. INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.

Context: Health care professionals (HCPs) currently judge pain presence and intensity in patients with delirium despite the lack of a valid, standardized assessment protocol. However, little is known about how they make these judgments. This information is essential to develop a valid and reliable assessment tool. Objectives: To identify pain cues that HCPs report to judge pain in patients with delirium and to examine whether the pain cues differed based on patient cognitive status and delirium subtype. Methods: Mixed qualitative-quantitative design. Doctors and nurses were recruited. All participants provided written informed consent, and before the recorded interview, demographic information was collected; then participants were asked to describe their practices and beliefs regarding pain assessment and management with older patients who are cognitively intact and patients with delirium. Interviews were transcribed verbatim and coded for pain cues. Coded data were imported into SPSS software (IBM SPSS Statistics Version 24; IBM Corporation, Armonk, NY) to conduct bivariate analyses. Results: The pain cue self-report was stated more often for intact than for delirium patients (χ [1; N = 106] = 22.56; P < 0.001). HCPs stated yelling (χ [2; N = 159] = 11.14; P = 0.004), when describing pain in hyperactive than in hypoactive and mixed delirium patients; and significantly more HCPs stated grimace (χ [2; N = 159] = 6.88; P = 0.03), when describing pain in hypoactive than hyperactive and mixed patients. Conclusion: This study outlines how HCPs conduct pain assessment in patients who are delirious and, also, identifies pain behavior profiles for the subtypes of delirium.

Background: Patients with advanced cancer have an elevated risk of venous thromboembolism. Increasingly, patients are admitted to palliative care settings for brief admissions, with greater numbers of discharges (vs deaths) reported internationally. There is limited guidance around the use of thromboprophylaxis or incidence of venous thromboembolism for these patients. Aim: The aim of this study was to review the use of thromboprophylaxis as well as incidence of venous thromboembolism and bleeding in palliative care units or residential hospices for patients with advanced cancer. Design: A systematic review using Cochrane methods. Data sources: Medline, Embase and the Cochrane Library were searched up to 28 September 2018 along with a grey literature search; the reference lists of selected papers were hand-searched. Inclusion criteria were original papers assessing thromboprophylaxis use in palliative care units or residential hospices for adult inpatients with cancer. Two reviewers independently selected and appraised papers using a tool designed for disparate data. Heterogeneity in study design made a meta-analysis not possible. Results: A total of 11 full-text papers (9 quantitative and 2 qualitative) and 11 abstracts were included. Thromboprophylaxis use ranged between 4% and 53%; venous thromboembolism rates between 0.5% and 20%; and bleeding incidence was between 0.01% and 9.8%. Risk assessment tools were used infrequently and adherence to international thromboprophylaxis guidelines ranged between 5% and 71%. Physician opinions differed around the use of thromboprophylaxis; patients were largely accepting of thromboprophylaxis if it was offered. Conclusion: There is limited evidence around the optimal use of thromboprophylaxis for patients with advanced cancer admitted to palliative care settings. Although some patients may derive benefit, further research in this area is warranted.

Background: Ensuring a good death in individuals with advanced disease is a fundamental goal of palliative care. However, the lack of a validated patient-centered measure of quality of dying and death in advanced cancer has limited quality assessments of palliative-care interventions and outcomes. Aim: To examine item characteristics and the factor structure of the Quality of Dying and Death Questionnaire in advanced cancer. Design: Cross-sectional study with pooled samples. Setting/participants: Caregivers of deceased advanced-cancer patients ( N = 602; mean ages = 56.39–62.23 years), pooled from three studies involving urban hospitals, a hospice, and a community care access center in Ontario, Canada, completed the Quality of Dying and Death Questionnaire 8–10 months after patient death. Results: Psychosocial and practical item ratings demonstrated negative skewness, suggesting positive perceptions; ratings of symptoms and function were poorer. Of four models evaluated using confirmatory factor analyses, a 20-item, four-factor model, derived through exploratory factor analysis and comprising Symptoms and Functioning, Preparation for Death, Spiritual Activities, and Acceptance of Dying, demonstrated good fit and internally consistent factors (Cronbach’s α = 0.70–0.83). Multiple regression analyses indicated that quality of dying was most strongly associated with Symptoms and Functioning and that quality of death was most strongly associated with Preparation for Death ( p Conclusion: A new four-factor model best characterized quality of dying and death in advanced cancer as measured by the Quality of Dying and Death Questionnaire. Future research should examine the value of adding a connectedness factor and evaluate the sensitivity of the scale to detect intervention effects across factors.

ObjectivesInternational medical graduates (IMGs) who pursue additional training in another country may encounter unique challenges that compromise their learning experience. This paper describes the development of an Online Bridging Program in the Division of Palliative Care at the University Health Network Toronto and examines its effectiveness in improving IMGs’ readiness for Canadian fellowship training.MethodsThe annual Online Bridging Program was developed to help new IMGs transitioning to Canadian palliative fellowship using Kern’s framework for curriculum development. Following a needs assessment, eight online modules with weekly live sessions were developed and underwent external content validation and usability tests. After each iteration, the programme was improved based on participant feedback. Evaluation was conducted first through an online survey immediately on completion of the programme and then through qualitative interviews 6 months into the fellowship. The interviews were analysed using Braun and Clarke’s model for thematic analysis.ResultsNine IMGs participated in the Online Bridging Program from 2018 to 2020. All nine participated in the survey and eight in the interviews. Responses to the online survey were almost unanimously positive, suggesting its effectiveness in assisting the IMGs’ transitions into fellowship. The interviews revealed four major themes: the importance of combining online modules and live sessions, reducing the fellows’ anxiety and easing the transition into their new role, an improved overall learning experience and recognising online format limitations.ConclusionThe Online Bridging Program effectively eased IMG palliative medicine fellows’ transition into training and enhanced their learning experience.

Background: Early palliative care improves quality of life and satisfaction with care and is increasingly endorsed for patients with advanced cancer. However, little is known about the experience of receiving early palliative care from a patient and caregiver perspective. Aim: The aim of this qualitative study was to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Design: Qualitative grounded theory study using individual interviews. Setting/participants: The study took place at a comprehensive cancer centre. Patients ( n = 26) and caregivers ( n = 14) from the intervention arm of a cluster-randomised controlled trial of early palliative care versus standard oncology care participated in qualitative interviews. Participants were asked to comment on their quality of life, the quality of care provided over the intervention period and their experiences with the palliative care team. Results: Participants described feeling supported and guided in their illness experience and in their navigation of the healthcare system. Specific elements of early palliative care included prompt, personalised symptom management; holistic support for patients and caregivers; guidance in decision-making; and preparation for the future. Patients with symptoms particularly valued prompt attention to their physical concerns, while those without symptoms valued other elements of care. Although three patients were ambivalent about their current need for palliative care, no distress was reported as a consequence of the intervention. Conclusion: The elements of care described by participants may be used to develop, support and refine models of early palliative care for patients with cancer.

Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.

BackgroundManaging Cancer And Living Meaningfully (CALM) is a brief individual psychotherapy for patients with advanced cancer. In an intervention-only phase 2a trial, CALM showed promising results, leading to the present 2b pilot, which introduces procedures for randomisation and improved rigour in preparation for a phase 3 randomised controlled trial (RCT).AimsTo test trial methodology and assess feasibility of a confirmatory RCT.DesignA parallel-arm RCT (intervention vs usual care) with 3 and 6-month follow-ups. Assessment of feasibility included rates of consent, randomisation, attrition, intervention non-compliance and usual care contamination. Primary outcome: depressive symptoms (Patient Health Questionnaire-9; PHQ-9). Secondary outcomes: major depressive disorder (MDD), generalised anxiety, death anxiety, spiritual well-being, attachment anxiety and avoidance, self-esteem, experiential avoidance, quality of life and post-traumatic growth. Bayesian conjugate analysis was used in this low-powered setting.Setting/participants60 adult patients with advanced cancer from the Princess Margaret Cancer Centre.ResultsRate of consent was 32%, randomisation 78%, attrition 25%, non-compliance 37% and contamination 17%. There was support for potential treatment effects on: PHQ-9, OR=1.48, 95% Credible Interval (CRI.95) (0.65, 3.38); MDD, OR=1.56, CRI.95(0.50, 4.84); attachment anxiety, OR=1.72, CRI.95(0.73, 4.03); and attachment avoidance, OR=1.58, CRI.95(0.67, 3.71). There was no support for effects on the seven remaining secondary outcomes.ConclusionsA phase 3 CALM RCT is feasible and should aim to detect effect sizes of d=0.40, with greater attention to issues of compliance and contamination.Trial registration numberNCT02353546.

Despite being declared a basic human right, access to adult and pediatric palliative care for millions of individuals in need in low- and middle-income countries (LMICs) continues to be limited or absent. The requirement to make palliative care available to patients with cancer is increasingly urgent because global cancer case prevalence is anticipated to double over the next two decades. Fifty percent of these cancers are expected to occur in LMICs, where mortality figures are disproportionately greater as a result of late detection of disease and insufficient access to appropriate treatment options. Notable initiatives in many LMICs have greatly improved access to palliative care. These can serve as development models for service scale-up in these regions, based on rigorous evaluation in the context of specific health systems. However, a multipronged public health approach is needed to fulfill the humane and ethical obligation to make palliative care universally available. This includes health policy that supports the integration of palliative care and investment in systems of health care delivery; changes in legislation and regulation that inappropriately restrict access to opioid medications for individuals with life-limiting illnesses; education and training of health professionals; development of a methodologically rigorous data and research base specific to LMICs that encompasses health systems and clinical care; and shifts in societal and health professional attitudes to palliative and end-of-life care. International partnerships are valuable to achieve these goals, particularly in education and research, but leadership and health systems stewardship within LMICs are critical factors that will drive and implement change.

We designed a novel, manualized intervention called Emotion And Symptom-focused Engagement (EASE) for acute leukemia (AL) and report here on a phase II randomized controlled trial (RCT) to assess its feasibility and preliminary efficacy.Patients were recruited within 1 month of hospital admission and randomized to EASE plus usual care (UC) or UC alone. EASE includes (1) EASE-psy, a tailored psychotherapy delivered over 8 weeks, and (2) EASE-phys, weekly physical symptom screening over 8 weeks to trigger early palliative care. The primary outcome was traumatic stress symptoms; secondary outcomes included physical symptom burden and quality of life. Assessments were conducted at baseline and at 4, 8, and 12 weeks. Between-group differences were evaluated using multilevel modeling.Forty-two patients were randomized to EASE (n = 22) or UC (n = 20), with 76% retention at 12 weeks. Predefined feasibility outcomes were met: 86% (19/22) of EASE participants completed ≥ 50% of EASE-psy sessions (goal ≥ 64%); 100% received Edmonton Symptom Assessment System (ESAS, modified for AL) screenings, 64% (14/22) of whom completed ≥ 50% of planned screenings (goal ≥50%); and 100% with scores ≥ 4/10 on any physical ESAS-AL item had ≥ 1 meeting with the EASE-phys team (goal 100%). Significant treatment-group differences favoring EASE were observed in traumatic stress symptoms at 4 and 12 weeks, and pain intensity and interference at 12 weeks (all p .05).EASE is feasible in patients newly diagnosed with AL and shows promise of effectiveness. These results warrant a larger RCT to provide evidence for its more routine use as a standard of care.

Background Felt security in close relationships may affect individual adaptation responses to existential threat in severe illness. We examined the contribution of attachment security to demoralization, a state of existential distress involving perceived pointlessness and meaninglessness in advanced cancer. Method A mixed cross-sectional sample of 382 patients with advanced cancer (mean age 59, 60% female) was recruited from outpatient oncology clinics. Participants completed self-report measures of attachment security, demoralization, depression, and physical symptom burden. We used multiple linear regression to analyze the association between attachment security and demoralization, controlling for demographic factors and symptom burden and tested whether attachment security moderated the association of symptom burden with demoralization. Separate analyses compared the contribution of the dimensions of attachment anxiety and attachment avoidance. Results The prevalence of clinically relevant demoralization was 35%. Demoralization was associated with lower attachment security (β = −0.54, 95%CI: −0.62 to 0.46). This effect was empirically stronger for attachment anxiety (β = 0.52, 95%CI: 0.44 to 0.60) compared to attachment avoidance (β = 0.36, 95%CI: 0.27 to 0.45). Attachment security also significantly moderated the association of physical symptom burden with demoralization, such that with less attachment security, there was a stronger association between symptom burden and demoralization. Conclusion Attachment security may protect from demoralization in advanced cancer. Its relative lack, particularly on the dimension of attachment anxiety, may limit adaptive capacities to deal with illness burden and to sustain morale and purpose in life. An understanding of individual differences in attachment needs can inform existential interventions for severely ill individuals.

© 2018 Elsevier Ltd Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Although timely palliative care is recommended for patients with advanced cancer, referrals to palliative care services are often late.To identify factors associated with early referral to an oncology palliative care clinic and to describe symptom severity according to timing of referral.We conducted a retrospective review of 337 patients with advanced cancer referred to outpatient palliative care at a comprehensive cancer center. We gathered data related to patient demographics, diagnosis, and referral. Timing of referral was categorized as early (12 months before death), intermediate (6-12 months before death), or late (6 months before death). Ordinal logistic regression was used to determine factors related to referral timing, and the Kruskal-Wallis test to determine symptom severity in each referral timing category.Of the 337 patients, 232 (69%) referrals were late, 60 (18%) intermediate, and 45 (13%) early. On multivariable analysis, earlier referral was associated with earlier primary cancer diagnosis (p = 0.004), and referral for pain and symptom management (p = 0.001). Patients who were referred late had worse overall Edmonton Symptom Assessment System distress scores, as well as worse tiredness, nausea, drowsiness, appetite, and wellbeing (all p ≤ 0.001). Severity of pain, shortness of breath, anxiety, and depression did not differ based on time of referral.A longer disease course and referral for symptom management were associated with earlier referral, whereas overall symptom burden was higher for late referrals. Further research is required on combining symptom screening with timely referral to improve symptom management in advanced cancer.

Context Residential hospices may be an optimal compromise between home and hospital settings for end-of-life care, but there has been little systematic research regarding the quality of dying and death in such locations. Objectives The objective of this study was to assess the quality of dying and death of patients who received end-of-life care in a residential hospice and its relationship to hospice length of stay (LOS) and prior receipt of palliative care. Methods A total of 100 caregivers of patients who died in a residential hospice in downtown Toronto, Canada, were recruited four to six months after patient's death. The quality of dying and death was measured, based on interviews with bereaved caregivers, using the Quality of Dying and Death (QODD) questionnaire. Results The overall mean QODD score was 68.85 ± 11.62, which is in the intermediate (“neither good nor bad”) range (30–70) of the scale. The lowest QODD subscale score was on the Transcendence subscale, which evaluates death-related concerns; this was 59.48 ± 25.37, with ratings in 14.6% of the sample in the “terrible to poor” (0–29) range. QODD scores were higher for patients with hospice LOS of more than one week (72.21 ± 9.64) than for those with a shorter LOS (60.38 ± 11.92) (P Conclusion Overall quality of dying and death was perceived as average to above average, in an urban residential hospice, although death-related distress was present in a substantial minority of patients. The association of better QODD with hospice LOS of more than one week may be due to better clinical status on admission and/or longer duration of time that is needed to achieve optimal outcomes.

Patients with advanced cancer can experience illness trajectories similar to other progressive chronic disease conditions where undertaking self-management (SM) and provision of self-management support (SMS) becomes important. The main objectives of this study were to map the literature of SM strategies and SMS needs of patients with advanced cancer and to describe SMS interventions tested in this patient population. A scoping review of all literature published between 2002 and 2016 was conducted. A total of 11 094 articles were generated for screening from MEDLINE, Embase, PsychINFO, CINAHL and Cochrane Library databases. A final 55 articles were extracted for inclusion in the review. Included studies identified a wide variety of SM behaviours used by patients with advanced cancer including controlling and coping with the physical components of the disease and facilitating emotional and psychosocial adjustments to a life-limiting illness. Studies also described a wide range of SMS needs, SMS interventions and their effectiveness in this patient population. Findings suggest that SMS interventions addressing SMS needs should be based on a sound understanding of the core skills required for effective SM and theoretical and conceptual frameworks. Future research should examine how a patient-oriented SMS approach can be incorporated into existing models of care delivery and the effects of SMS on quality of life and health system utilisation in this population.

Acute palliative care units (APCUs) admit patients with cancer for symptom control, transition to community palliative care units or hospice (CPCU/H), or end-of-life care. Prognostication early in the course of admission is crucial for decision-making. We retrospectively evaluated factors associated with patients’ discharge disposition on an APCU in a cancer center. We evaluated demographic, administrative, and clinical data for all patients admitted to the APCU in 2015. Clinical data included cancer diagnosis, delirium screening, and Edmonton Symptom Assessment System (ESAS) symptoms. An ESAS sub-score composed of fatigue, drowsiness, shortness of breath, and appetite (FDSA) was also investigated. Factors associated with patients’ discharge disposition (home, CPCU/H, died on APCU) were identified using three-level multinomial logistic regression. Among 280 patients, the median age was 65.5 and median length of stay was 10 days; 155 (55.4%) were admitted for symptom control, 65 (23.2%) for transition to CPCU/H, and 60 (21.4%) for terminal care. Discharge dispositions were as follows: 156 (55.7%) died, 63 (22.5%) returned home, and 61 (21.8%) were transferred to CPCU/H. On multivariable analysis, patients who died were less likely to be older (OR 0.97, p = 0.01), or to be admitted for symptom control (OR 0.06, p

Objective Acute leukemia (AL) is a life-threatening cancer associated with substantial morbidity and mortality, particularly in older adults. Given that there has been little research on the psychological impact of such malignancies with acute onset, we assessed the prevalence and correlates of depression and hopelessness in patients with AL. Methods Three hundred forty-one participants were recruited within 1 month of diagnosis or relapse and completed the Beck Depression Inventory-II (BDI-II), Beck Hopelessness Scale (BHS), Memorial Symptom Assessment Scale, and other psychosocial measures. Multivariate regression analyses identified correlates of depression and hopelessness. Results 17.8% reported clinically significant depressive symptoms (BDI-II ≥ 15), 40.4% of which were in the moderate-severe range (BDI-II ≥ 20). 8.5% reported significant symptoms of hopelessness (BHS ≥ 8). Depression was associated with greater physical symptom burden (adjusted R2 = 48.4%), while hopelessness was associated with older age and lower self-esteem (adjusted R2 = 45.4%). Both were associated with poorer spiritual well-being. Conclusions Clinically significant depressive symptoms were common early in the course of AL and related to physical symptom burden. Hopelessness was less common and associated with older age and lower self-esteem. The results suggest that whereas depression in AL may be related to disease burden, the preservation of hope may be linked to individual resilience, life stage, and realistic prognosis. Copyright © 2015 John Wiley & Sons, Ltd.

The nature of cancer control is changing, with an increasing emphasis, fuelled by public and political demand, on prevention, early diagnosis, and patient experience during and after treatment. At the same time, primary care is increasingly promoted, by governments and health funders worldwide, as the preferred setting for most health care for reasons of increasing need, to stabilise health-care costs, and to accommodate patient preference for care close to home. It is timely, then, to consider how this expanding role for primary care can work for cancer control, which has long been dominated by highly technical interventions centred on treatment, and in which the contribution of primary care has been largely perceived as marginal. In this Commission, expert opinion from primary care and public health professionals with academic and clinical cancer expertise-from epidemiologists, psychologists, policy makers, and cancer specialists-has contributed to a detailed consideration of the evidence for cancer control provided in primary care and community care settings. Ranging from primary prevention to end-of-life care, the scope for new models of care is explored, and the actions needed to effect change are outlined. The strengths of primary care-its continuous, coordinated, and comprehensive care for individuals and families-are particularly evident in prevention and diagnosis, in shared follow-up and survivorship care, and in end-of-life care. A strong theme of integration of care runs throughout, and its elements (clinical, vertical, and functional) and the tools needed for integrated working are described in detail. All of this change, as it evolves, will need to be underpinned by new research and by continuing and shared multiprofessional development.

The Edmonton Symptom Assessment System (ESAS) measures the severity of nine symptoms. Constipation and sleep disturbance are common in patients with cancer, but are not currently included in the ESAS.To validate the numerical rating scale (NRS) versions of ESAS and its revised version (ESAS-r), with the additional symptoms of constipation and sleep (CS), and to assess patient preference for either version.Outpatients with advanced cancer (N = 202) completed three assessments during a single clinic visit: ESAS-CS, and an added time window of "past 24 hours"; ESAS-r-CS, with a time window of "now" and symptom definitions; and the Memorial Symptom Assessment Scale (MSAS). Internal consistency was calculated using Cronbach's alpha. Paired t-tests compared ESAS-CS and ESAS-r-CS scores; these were correlated with MSAS using Spearman correlation coefficients. Test-retest reliability at 24 hours was assessed in 26 patients.ESAS-CS and ESAS-r-CS total scores correlated well with total MSAS (Spearman's rho 0.62 and 0.64, respectively). Correlation of individual symptoms with MSAS symptoms ranged from 0.54-0.80 for ESAS-CS and 0.52-0.74 for ESAS-r-CS. Although participants preferred the ESAS-r-CS format (42.8% vs. 18.6%) because of greater clarity and understandability, the "past 24 hours" time window (52.8%) was favored over "now" (21.3%). Shortness of breath and nausea correlated better for the "past 24 hours" time window (0.8 and 0.72 vs. 0.74 and 0.64 in ESAS-r-CS, respectively). The 24-hour test-retest of the ESAS-CS demonstrated acceptable reliability (intraclass correlation coefficient = 0.69).The ESAS-CS and ESAS-r-CS NRS versions are valid and reliable for measuring symptoms in this population of outpatients with advanced cancer. Although the ESAS-r-CS was preferred, patients favored the 24-hour time window of the ESAS-CS, which also may best characterize fluctuating symptoms.

Objective: The circumstances of advanced cancer can cause considerable psychological distress, including death anxiety and demoralization. Although these states of existential distress have a negative impact on the quality of life of patients with advanced cancer, they are rarely evaluated as outcomes or targets of interventions in this population. In an effort to improve understanding of existential distress, a structural model of relationships among death anxiety, demoralization, symptom burden, and social relatedness was tested in patients with advanced cancer. Methods: A total of 307 patients with advanced cancer completed baseline measures including the Death and Dying Distress Scale, the Demoralization Scale, the modified Experiences in Close Relationships Scale, the Life Completion subscale of the Quality of Life Evaluation—Cancer scale, the Memorial Symptom Assessment Scale, and Karnofsky Performance Status. A structural equation model of protective and risk factors for demoralization and death anxiety was tested. Results: The final model had good fit (SRMR = 0.061; RMSEA = 0.077; CFI = 0.927; NNFI = 0.902) in which death anxiety was positively associated with demoralization (β = 0.71), and demoralization was positively associated with symptom burden (β = 0.31) and negatively associated with social relatedness (β = −0.74). Conclusions: The findings of this study suggest that demoralization and death anxiety are closely linked in patients with advanced cancer. The contribution of both symptom burden and low social relatedness to demoralization suggests that an integrated intervention addressing both physical and psychosocial disease factors may be most effective at alleviating such states of existential distress.

Palliative care (PC) concurrent with usual oncology care is now the standard of care that is recommended for any patient with advanced cancer to begin within 8 weeks of diagnosis on the basis of evidence-driven national clinical practice guidelines; however, there are not enough interdisciplinary palliative care teams to provide such care. How and what can an oncology office incorporate into usual care, borrowing the tools used in PC randomized clinical trials (RCTs), to improve care for patients and their caregivers? We reviewed the multiple RCTs for common practical elements and identified methods and techniques that oncologists can use to deliver some parts of concurrent interdisciplinary PC. We recommend the standardized assessment of patient-reported outcomes, including the evaluation of symptoms with such tools as the Edmonton or Memorial Symptom Assessment Scales, spirituality with the FICA Spiritual History Tool or similar questions, and psychosocial distress with the Distress Thermometer. All patients should be assessed for how they prefer to receive information, their current understanding of their situation, and if they have considered some advance care planning. Approximately 1 hour of additional time with the patient is required each month. If the oncologist does not have established ties with spiritual care and social work, he or she should establish these relationships for counseling as required. Caregivers should be asked about coping and support needs. Oncologists can adapt PC techniques to achieve results that are similar to those in the RCTs of PC plus usual care compared with usual care alone. This is comparable to using data from RCTs of trastuzamab or placebo, adopting what was used in the RCTs without modification or dilution.

Purpose: To describe prevalence and characteristics associated with family physician and general practitioner (FP/GP) provision of home palliative care (HPC). Methods: We surveyed FP/GPs in an urban health region of Ontario, Canada, to determine their current involvement in HPC, the nature of services provided, and perceived barriers and enablers. Results: A total of 1439 surveys were mailed. Of the 302 FP/GP respondents, 295 provided replies regarding engagement in HPC: 101 of 295 (33%) provided HPC, 76 (26%) were engageable with further support, and 118 (40%) were not engageable regardless of support. The most substantial barrier was time to provide home visits (81%). Engaged FP/GPs were most likely to be working with another physician providing HPC ( P < .0001). Engageable FP/GPs were younger ( P = .007) and placed greater value on improved remuneration ( P < .001) than the other groups. Nonengageable physicians were most likely to view time as a barrier ( P < .0001) and to lack interest in PC ( P = .03). Conclusion: One-third of FP/GPs provide HPC. A cohort of younger physicians could be engageable with adequate support. Integrated practices including collaboration with specialist PC colleagues should be encouraged and supported.