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Background Evidence from randomized controlled trials has demonstrated benefits in quality of life outcomes from early palliative care concurrent with standard oncology care in patients with advanced cancer. We hypothesized that there would be earlier referral to outpatient palliative care at a comprehensive cancer center following this evidence. Materials and Methods Administrative databases were reviewed for two cohorts of patients: the pre-evidence cohort was seen in outpatient palliative care between June and November 2006, and the post-evidence cohort was seen between June and November 2015. Timing of referral was categorized, according to time from referral to death, as early (>12 months), intermediate (>6 months to 12 months), and late (≤6 months from referral to death). Univariable and multivariable ordinal logistic regression analyses were used to determine demographic and medical factors associated with timing of referral. Results Late referrals decreased from 68.8% pre-evidence to 44.8% post-evidence; early referrals increased from 13.4% to 31.1% (p < .0001). The median time from palliative care referral to death increased from 3.5 to 7.0 months (p < .0001); time from diagnosis to referral was also reduced (p < .05). On multivariable regression analysis, earlier referral to palliative care was associated with post-evidence group (p < .0001), adjusting for shorter time since diagnosis (p < .0001), referral for pain and symptom management (p = .002), and patient sex (p = .04). Late referrals were reduced to Conclusions Following robust evidence from trials supporting early palliative care for patients with advanced cancer, patients were referred substantially earlier to outpatient palliative care. Implications for Practice Following published evidence demonstrating the benefit of early referral to palliative care for patients with advanced cancer, there was a substantial increase in early referrals to outpatient palliative care at a comprehensive cancer center. The increase in early referrals occurred mainly in tumor sites that have been included in trials of early palliative care. These results indicate that oncologists’ referral practices can change if positive consequences of earlier referral are demonstrated. Future research should focus on demonstrating benefits of early palliative care for tumor sites that have tended to be omitted from early palliative care trials.

With advances in medical treatment and an aging population, there is an increasing global burden of advanced and life-limiting illnesses. Individuals living with these conditions may experience substantial distress related to disease progression, changes in important roles and life goals, loss of meaning, and uncertainty about the future, but there has been limited evidence to inform their psychotherapeutic care. Managing cancer and living meaningfully (CALM) therapy is a brief, evidence-based, semistructured intervention that provides a framework to address practical issues, such as navigating the health care system and treatment decisions, and existential issues, including finding meaning and hope in the face of mortality. CALM has been shown to alleviate and prevent depression and to facilitate preparation for the end of life among patients with advanced cancer. It is being adapted to other life-threatening illnesses and different cultural contexts and health care settings. Advocacy is needed to support such approaches for individuals living with advanced and life-threatening illness.

Several recent publications, by Heinrich et al. and Chang and Lai, have confirmed the association of well-established risk factors for suicide in cancer. Here, we provide additional insight into these findings, highlighting the need to shift the clinical and research focus to the testing of proactive models of psychosocial care to improve mental health and prevent suicides in cancer.

IntroductionManaging Cancer and Living Meaningfully (CALM) is a novel, brief and manualised psychotherapeutic intervention intended to treat and prevent depression and end-of-life distress in patients with advanced cancer. This phase 2 trial aims to assess the feasibility and preliminary efficacy of CALM in Japanese patients with cancer.Methods and analysisThis study is a single-arm clinical trial. All patients involved in the study are ≥18 years of age, have been diagnosed with advanced or metastatic solid-tumour cancer, and their expected survival is at least 6 months. CALM comprises three to six individual therapy sessions, each lasting approximately 45–60 min, provided over 3– 6 months. The participants will be asked to complete questionnaires at baseline (t0), 3 months (t1) and 6 months (t2). The primary outcomes are rates of completion of the intervention and of the outcome measures and improvement of depressive symptoms measured using the Patient Health Questionnaire-9 between t0 and t2. The criteria for the successful rate of completion is that at least 70% participants who participate in at least three sessions will complete measures at t2. The secondary outcomes are the improvement in scores on: (1) the Quality of Life at the End of Life-Cancer Scale, (2) the Experiences in Close Relationships scale, (3) the Death and Dying Distress Scale and (4) the Clinical Evaluation Questionnaire.Ethics and disseminationThis study was approved by the Research Ethics Committee of The University of Tokyo, Cancer Institute Hospital of Japanese Foundation for Cancer Research and Yamaguchi University. We will conduct the study in accordance with the Declaration of Helsinki and the Ethical Guidelines for Medical and Health Research Involving Human Subjects. The results of this study will be submitted for peer-reviewed publication and presentation at local, national and international scientific meetings and conferences.Trail registration numberUMIN000040032; Pre-results.

Background: Patients with advanced cancer commonly report depressive symptoms. Examinations of gender differences in depressive symptoms in patients with advanced cancer have yielded inconsistent findings. Aim: The objective of this study was to investigate whether the severity and correlates of depressive symptoms differ by gender in patients with advanced cancer. Design: Participants completed measures assessing sociodemographic and medical characteristics, disease burden, and psychosocial factors. Depressive symptoms were examined using the Patient Health Questionnaire, and other measures included physical functioning, symptom burden, general anxiety, death related distress, and dimensions of demoralization. A cross-sectional analysis examined the univariate and multivariate relationships between gender and depressive symptoms, while controlling for important covariates in multivariate analyses. Setting/participants: Patients with advanced cancer ( N = 305, 40% males and 60% females) were recruited for a psychotherapy trial from outpatient oncology clinics at a comprehensive cancer center in Canada. Results: Severity of depressive symptoms was similar for males ( M = 7.09, SD = 4.59) and females ( M = 7.66, SD = 5.01), t(303) = 1.01, p = 0.314. Greater general anxiety and number of cancer symptoms were associated with depressive symptoms in both males and females. Feeling like a failure ( β = 0.192), less death anxiety ( β = –0.188), severity of cancer symptoms ( β = 0.166), and older age ( β = 0.161) were associated with depressive symptoms only in males, while disheartenment ( β = 0.216) and worse physical functioning ( β = 0.275), were associated with depressive symptoms only in females. Conclusions: Males and females report similar levels of depressive symptoms but the pathways to depression may differ by gender. These differences suggest the potential for gender-based preventive and therapeutic interventions in this population.

Background A diagnosis of cancer may increase mortality salience and provoke death-related distress. Primary brain tumor (PBT) patients may be at particular risk for such distress given the certainty of tumor progression, lack of curative treatments, and poor survival rates. This study is the first to examine the prevalence of death-related distress and its correlates in PBT patients. Methods Adult PBT patients (N = 105) enrolled in this cross-sectional study and completed the Death Distress Scale (subscales: Death Depression, Death Anxiety, Death Obsession), Generalized Anxiety Disorder–7, and Patient Health Questionnaire–9. Prevalence and predictors of death-related distress, and the relationships of demographic variables to clusters of distress, were explored. Results The majority of PBT patients endorsed clinically significant death-related distress in at least one domain. Death anxiety was endorsed by 81%, death depression by 12.5%, and death obsession by 10.5%. Generalized anxiety was the only factor associated with global death-related distress. Cluster analysis yielded 4 profiles: global distress, emotional distress, resilience, and existential distress. Participants in the resilience cluster were significantly further out from diagnosis than those in the existential distress cluster. There were no differences in cluster membership based on age, sex, or tumor grade. Conclusions PBT patients appear to have a high prevalence of death-related distress, particularly death anxiety. Further, 4 distinct profiles of distress were identified, supporting the need for tailored approaches to addressing death-related distress. A shift in clusters of distress based on time since diagnosis also suggest the need for future longitudinal assessment.

Background Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Methods Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing desire to die”. Conclusions We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically – based on evidence, patients’ views and consensus among professional experts. Trial registration The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

Contains fulltext : 282634.pdf (Publisher’s version ) (Open Access) OBJECTIVE: How patients and their partners cope with advanced cancer as a couple, may impact their emotional functioning (EF). The aim of this study was to assess dyadic coping (DC) of couples confronted with advanced cancer and its association with EF. METHODS: Actor-partner interdependence models were used to analyze baseline data of 566 couples facing advanced cancer participating in an observational study on quality of care and life. Measures included the DC Inventory and the European Organization for Research and Treatment of Cancer quality of life questionnaire (EOQLQ-C30). RESULTS: Negative DC (mean 86-88) was most often used and common DC (both mean 66) was least often used. We found small to moderate interdependence (r = 0.27-0.56) between patients' and partners' DC perceptions. Compared to partners, patients were more satisfied with their DC (p

Background: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers. Aim: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision. Design: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. Setting/participants: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study. Results: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p Conclusion: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care.

ObjectivesThe Clinical Evaluation Questionnaire (CEQ) is a patient-reported experience measure (PREM) that assesses the perceived benefit of therapeutic interactions of patients with advanced cancer with their healthcare providers concerning issues relevant to their illness. It was developed for a randomised controlled trial of Managing Cancer and Living Meaningfully (CALM), a brief supportive-expressive therapy for patients with advanced cancer. The present study evaluates the preliminary psychometric properties of the CEQ.MethodPatients in the CALM and usual care groups completed the CEQ 3 (n=195) and 6 (n=186) months after randomisation. The CEQ’s internal consistency, factor structure and concurrent validity were evaluated, and CEQ scores in the treatment groups were compared.ResultsThe CEQ demonstrated high internal consistency for both treatment arms (Cronbach’s α=0.94 to 0.95), and a single factor was consistently found in exploratory factor analyses. CEQ scores correlated significantly with satisfaction with the relationship with healthcare providers (r=0.23 to 0.61, p≤0.02) and life completion (r=0.24 to 0.37, p≤0.02) in both groups and with spiritual well-being in the CALM group (meaning: r=0.23 to 0.24, p=0.01 to 0.02; faith: r=0.24 to 0.34, p=0.001 to 0.02). The CALM group showed higher CEQ total scores than usual care at 6 months (CALM: 18.19±6.59; usual care: 14.36±7.67, pConclusionsThe CEQ is a reliable and valid PREM of the benefit perceived by patients with advanced cancer from their interactions with healthcare providers. Further study is needed to establish its value as a measure of perceived intervention benefit across different clinical and research settings.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Palliative care encompasses psychological, spiritual, and family domains along with physical concerns. Validated measures of relevant outcomes are increasingly available and can contribute to improving the quality of care by enhancing the assessment of disturbances, allowing for greater confidence in what is being measured, improving specificity in subsequent assessments or interventions, and increasing comparability and generalizability of research findings across different settings. This chapter provides an overview of validated tools that can be used to assess well-being, distress, and impairment in psychological, spiritual, and family domains of palliative care. Optimal clinical use of the measurement tools is discussed and the quality of research evidence is evaluated. Recommendations for integration of these measures into clinical practice and future directions for research are made.

Caregivers of patients with advanced disease can be seen as both care providers and as receivers of care. Family caregivers frequently face a wide range of their own psychological, spiritual, social, financial, and physical challenges, which may increase in duration due to longer survival and more ambulatory and home care of patients with advanced disease. While support for family caregivers is an integral component of quality palliative care, such support is often unavailable and there is a dearth of evidence-based interventions for caregivers. This chapter will provide an overview of the common issues faced by family caregivers of adults in palliative care, the factors that contribute to or exacerbate these problems, the interventions designed to address them and their supporting evidence, and the potential for personal growth in caregivers. Gaps in clinical practice and research are identified and future directions for clinical attention and research are discussed.

BackgroundThe legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers.MethodsA cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods.DiscussionThis study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.

Issue: Medical assistance in dying (MAID) became legal in Quebec on December 10, 2015, and in the rest of Canada on June 17, 2016. This enabled 6,749 deaths through physician-assisted suicide or euthanasia between December 10, 2015 and October 31, 2018. While the death of a patient is a common experience for medical trainees, those that occur through MAID have unique features related to the methods, the timeline, the intended role of the physician in causing the death, and the request of the patient that initiates the process. These aspects necessitate a distinct approach to MAID medical education. Evidence: Despite the legalization of MAID in a growing number of jurisdictions, there is virtually no literature to guide MAID education in clinical practice. The cumulative evidence regarding the impact of patient death on medical students, residents, and attending physicians suggests a need for supported discussion and debriefing to process and reflect on the emotional experiences that follow patient death. This is especially important with MAID, in which there are unique ethical and psychological issues related to the physician's direct role in causing the death of a patient. There is little published research on the impact such deaths have on physicians who provide MAID, or on others who are indirectly involved. However, there is evidence that learners desire MAID-specific education tailored to their unique needs. Didactic education about the medical and legal domains of MAID alone is insufficient to support learners' needs. Experiential case-based learning with supervisory support has the potential to enhance training in end-of-life care in general, and specifically in MAID. The authors' first clinical experience with a patient requesting MAID on an internal medicine clinical teaching unit (CTU) highlighted gaps in their preparedness to meet the associated professional and personal demands. Reflecting on these perceived gaps, and on the needs of learners identified in the literature on patient death and MAID education, the authors created a framework to guide learning at the point of care of a patient requesting MAID. Represented in a MAID Education Cogwheel and discussion guide, this framework specifies learning objectives and methods in six domains: medical, legal, moral, ethical, cultural, and psychosocial. Implications: Following a MAID request, attending physicians can use the framework to guide learners in ongoing conversations addressing these domains. Inter-professional participation can include such disciplines as psychiatry, palliative care, bioethics, pharmacy, nursing, physical and occupational therapy, social work, and spiritual care. Further research is necessary to test this framework to determine its' feasibility, efficacy, and generalizability.

Background: Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. Aim: To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. Design: A constructivist qualitative grounded theory study was conducted. Setting/participants: A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. Results: The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door—creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust—establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions—addressing patients’ assumptions about palliative care as signifying death; and advocating with oncologists—seeding the process of referral by bringing patients’ concerns forward. Conclusion: Oncology nurses play a central role in “brokering” the introduction of early palliative care; this process is supported by their relational proximity to patients and their location “in between” the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.

To describe the practices and opinions of specialized palliative care (SPC) physicians regarding early palliative care for patients with cancer, determine characteristics associated with receiving early referrals; and solicit opinions regarding renaming the specialty “supportive care.” The survey was distributed by mail and e-mail to physicians who had previously self-identified as providing palliative care. SPC physicians were defined as receiving palliative care referrals from other physicians and not providing palliative care only for their own patients. The response rate was 71% (531/746), of whom 257 (48.4%) practiced SPC. Of these SPC physicians, 84% provided mainly cancer care; > 90% supported early palliative care referral in oncology and had referral criteria facilitating this, but only 20% received early referrals (> 6-month prognosis). There was ambivalence regarding caring for patients with full resuscitation status and responsibility for managing cancer treatment-related complications. SPC physicians receiving early referrals were more likely to be female (p = 0.02) and have a postgraduate degree (p = 0.02), and less likely to provide mainly cancer care (p = 0.03) and to agree that patients should stop chemotherapy before referral (p = 0.009). Although 60% agreed that patients perceive the term “palliative care” negatively and 39% believed a name change to supportive care would encourage early referral, only 21% supported renaming the specialty. Although most SPC physicians supported early palliative care in oncology, the timing of referrals was often late, and was associated with characteristics of SPC physicians. Few SPC physicians supported renaming palliative care.

Background Pancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs. Nevertheless, access to psychosocial and palliative care services for the individuals affected is limited. There is a need for standardized approaches to facilitate adjustment and to improve knowledge about the disease and its anticipated impact. In this intervention-development paper guided by implementation science principles, we report the rationale, methods, and processes employed in developing an interdisciplinary group psychoeducational intervention for people affected by pancreatic cancer. The acceptability and feasibility of implementation will be evaluated as a part of a subsequent feasibility study. Methods The Schofield and Chambers framework for designing sustainable self-management interventions in cancer care informed the development of the intervention content and format. The Consolidated Framework for Implementation Research served as an overarching guide of the implementation process, including the development phase and the formative evaluation plan of implementation. Results A representative team of stakeholders collaboratively developed and tailored the intervention content and format with attention to the principles of implementation science, including available resourcing. The final intervention prototype was designed as a single group-session led by an interdisciplinary clinical team with expertise in caring for patients with pancreatic cancer and their families and in addressing nutrition guidelines, disease and symptom management, communication with family and health care providers, family impact of cancer, preparing for the future, and palliative and supportive care services. Conclusions The present paper describes the development of a group psychoeducational intervention to address the informational and supportive care needs of people affected by pancreatic cancer. Consideration of implementation science during intervention development efforts can optimize uptake and sustainability in the clinical setting. Our approach may be utilized as a framework for the design and implementation of similar initiatives to support people affected by diseases with limited prognoses. Electronic supplementary material The online version of this article (10.1186/s40814-019-0466-x) contains supplementary material, which is available to authorized users.

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

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

PURPOSE: Mentalization has been clearly defined in the literature as a relational concept and yet in surveys and transcript-based measures it is almost universally treated as an individual capacity. That approach has value but may not capture the emergent nature of mentalization, as it is jointly constructed within a relational context. // METHODS: We report here on a critical evaluation of measurement approaches commonly used to conceptualize and assess mentalization and argue for the value of conversation analysis (CA) as an alternative approach. // RESULTS: A variety of approaches have been shown to have utility in assessing mentalization as an individual capacity. We illustrate how conversation analysis allows for an in-depth-analysis of mentalization as it is co-created across different contexts in real-life therapy sessions. This method of analysis shifts the focus from content to process. // CONCLUSIONS: Conversation analysis is a potentially valuable tool to support training, to assess treatment integrity, and to improve outcomes with mentalization-based interventions.

Objective To identify how therapists invite patients with advanced cancer to engage with alternative perspectives about their illness trajectory and their end of life. Methods Sequences of talk in which a therapist introduced a patient to alternative perspectives, were transcribed and analysed using the method of conversation analysis. Results The analysis identifies one subtle way a patient is invited to consider an alternative perspective relating to their disease progression. Meaning expansion enquiries invite the patient to expand on the meaning of an utterance and in doing so, implicitly problematize the singularity of the patient’s assumptions, without directly challenging them. The questions work as preliminary moves, providing the patient with the opportunity to expand on their assumptions. This enables the therapist to subsequently present an alternative perspective in a way that incorporates the patient’s expanded perspective. Conclusion The analysis reveals a skilful way in which therapists can cautiously and collaboratively introduce a patient to alternative perspectives concerning end-of-life, without invalidating the patient’s perspective in this particularly delicate context. Practice Implications Whilst mentalization is considered an important therapeutic process, the present study reveals precisely how this phenomenon can be enacted in therapy and within the particularly challenging context of end-of-life.

IntroductionEvaluating the quality of dying and death is essential to ensure high-quality end-of-life care. The Quality of Dying and Death (QODD) scale is the best-validated measure of the construct, but many items are not relevant to participants, particularly in low-resource settings. The aim of this multisite cross-sectional study is to develop and validate the QODD-Revised Global Version (QODD-RGV), to enhance ease of completion and relevance in higher-resource and lower-resource settings.Methods and analysisThis study will be a two-arm, multisite evaluation of the cultural relevance, reliability and validity of the QODD-RGV across four participating North American hospices and a palliative care site in Malawi, Africa. Bereaved caregivers and healthcare providers of patients who died at a participating North American hospice and bereaved caregivers of patients who died of cancer at the Malawian palliative care site will complete the QODD-RGV and validation measures. Cognitive interviews with subsets of North American and Malawian caregivers will assess the perceived relevance of the scale items. Psychometric evaluations will include internal consistency and convergent and concurrent validity.Ethics and disseminationThe North American arm received approval from the University Health Network Research Ethics Board (21-5143) and the University of North Carolina Institutional Review Board (21-1172). Ethics approval for the Malawi arm is being obtained from the University of North Carolina Institutional Review Board and the Malawian National Health Science Research Committee. Study findings will be disseminated through publication in peer-reviewed journals and conference presentations.

TPS7072 Background: Acute leukemia (AL) is characterized by rapid symptom onset requiring urgent hospitalization and initiation of intensive treatment with high mortality. Despite this, there is scant research on its psychological and physical impacts and even less on interventions to alleviate them [Bryant 2016]. We conducted a longitudinal study showing substantial physical and psychological distress in these patients [Rodin 2013; Zimmermann 2013; Nissim 2013; Nissim 2014; Gheihman 2016; Rodin 2018a; Shaulov 2019]. Despite this distress, we observed a lack of referrals for specialized psychosocial and palliative care. Based on these findings, we developed an integrated psychosocial and early palliative care (symptom control) intervention, Emotion And Symptom-focused Engagement (EASE), for AL [Rodin 2015]. In a subsequent randomized phase II trial of EASE in patients newly diagnosed with AL, we demonstrated its feasibility and found preliminary evidence that it reduces physical and psychological distress compared to usual care [Rodin 2020]. EASE includes: i) an 8-week manualized psychotherapy intervention tailored to AL to prevent and treat psychological symptoms through: supportive counselling and trauma-focused cognitive-behavioural therapy; and emotional assessment and affect modulation; ii) 4-week systematic screening of physical symptoms with automatic referrals to palliative care for the management of moderate to severe symptoms. Methods: We are conducting a multi-centre randomized controlled phase III trial of 266 AL patients comparing EASE to usual care in collaboration with the Canadian Cancer Trials Group at Princess Margaret Cancer Centre, Sunnybrook Health Sciences, Kingston Health Sciences and the Ottawa Hospital in Ontario, Canada. Patients are newly diagnosed with acute myeloid leukemia or acute lymphoblastic leukemia and randomized within two weeks of hospital admission for induction chemotherapy with curative intent. Patients randomized to EASE will receive psychological support from a trained mental health clinician for 8 weeks and will be assessed for physical symptoms twice weekly until discharged from hospital. Moderate to severe physical symptoms will trigger a referral to a symptom-control team for symptom management. The symptom-control team consists of a physician and nurse with expertise in symptom control and other professionals as needed. All participants will be assessed for physical symptom severity, psychological distress, quality of life and satisfaction with care at baseline, 4, 8, 12 weeks, 6 and 12 months. Hypotheses will be tested using multilevel modeling (MLM) with maximum likelihood estimation, conducted as intention-to-treat analyses. The DMC last reviewed the trial in April 2021 and suggested that the trial continue as planned. Clinical trial information: NCT04224974.

e24084 Background: To direct limited specialized palliative care resources to patients in greatest need, we developed STEP (Symptom screening with Targeted Early Palliative care). STEP entails symptom screening (ESAS-r) at each oncology clinic visit and triggered alerts (for moderate-high physical and psychological symptoms) to a nurse who calls the patient to offer a palliative care clinic (PCC) visit. We conducted a phase III RCT to assess the impact of STEP versus usual care on quality of life and other patient-reported outcomes (PROs). Methods: Adults with advanced cancer were recruited from medical oncology clinics at the Princess Margaret Cancer Centre, Toronto, Canada. Consenting patients with oncologist-assessed ECOG 0-2 and estimated survival of 6-36 months were enrolled and block randomized (stratified by tumour site and symptom severity) to STEP or usual care. Participants completed measures of quality of life (FACT-G7), depression (PHQ-9), symptom control (ESASr-CS), and satisfaction with care (FAMCARE-P16) at baseline, 2, 4 and 6 months. The primary outcome was FACT-G7 at 6 months, with a planned sample size of 261/arm. Results: From 8/2019 to 3/2020, 69 patients were enrolled: 33 randomized to STEP and 36 to usual care. The trial was then halted permanently due to the COVID-19 pandemic, owing to substantial changes to elements of STEP (shift to virtual symptom screening and palliative care) and usual care (shift to virtual oncology care). Median age was 64 years (range 25-87) and 62% (43/69) were women; study arms were balanced at baseline except gender, with more women randomized to STEP. Within the STEP arm, 20 (61%) participants triggered a nurse’s call to offer a PCC visit, of whom 13 attended the clinic at least once. All outcomes tended to be better in the STEP arm compared to usual care, particularly depression and satisfaction with care at 6 months; however, results were not statistically significant (Table). Conclusions: STEP holds promise for improving quality of life and other PROs in patients with advanced cancer and effectively directing early palliative care towards those who need it most. In response to the pandemic, an online version of STEP has been developed and a further trial is in progress. Clinical trial information: NCT03987906. [Table: see text]

Purpose Despite increased access to palliative care in Africa, there remains substantial unmet need. We examined the impact of approaches to promoting the development of palliative care in two African countries, Uganda and Kenya, and considered how these and other strategies could be applied more broadly. Methods This study reviews published data on development approaches to palliative care in Uganda and Kenya across five domains: education and training, access to opioids, public and professional attitudes, integration into national health systems, and research. These countries were chosen because they are African leaders in palliative care, in which successful approaches to palliative care development have been used. Results Both countries have implemented strategies across all five domains to develop palliative care. In both countries, successes in these endeavors seem to be related to efforts to integrate palliative care into the national health system and educational curricula, the training of health care providers in opioid treatment, and the inclusion of community providers in palliative care planning and implementation. Research in palliative care is the least well-developed domain in both countries. Conclusion A multidimensional approach to development of palliative care across all domains, with concerted action at the policy, provider, and community level, can improve access to palliative care in African countries.

This text outlines the empirical research, theoretical underpinnings, and clinical application of a novel supportive-expressive psychotherapy for patients with metastatic cancer and their caregivers. Managing Cancer and Living Meaningfully, known by its acronym of CALM, provides a framework for therapists with diverse backgrounds and training to help patients and their caregivers to address the practical and profound challenges of advanced cancer and to live their lives as meaningfully as possible. CALM provides reflective space for them to consider treatment decisions and communication with their health care providers, disruptions in identity, attachment security and the sense of meaning in their life, and to address fears, hopes, and concerns related to the end of life. Particular attention is paid in CALM to the regulation of affect, to the renegotiation of attachment relationships and to helping patients and their caregivers to sustain “double awareness” of the possibilities for living, while also managing their disease and planning for the end of life. Such an approach not only helps to prevent depression and death anxiety, but also helps to reclaim the loss of the imaginative possibilities for living in the context of all-consuming cancer care. The universal dimensions of advanced cancer and the semi-structured nature of CALM permit it to be delivered in the language and cultural idiom of cancer treatment settings in virtually all parts of the world. This text provides the most comprehensive and up-to-date description of the evidence base for CALM, its theoretical foundations and a manualized guide to its clinical application, filled with rich clinical illustrations.

This chapter describes the four domains of Managing Cancer and Living Meaningfully (CALM), which represent the general content themes that patients are given the opportunity to address over the course of CALM therapy. These domains—namely, symptom management and communication with healthcare providers; changes in self and relations with close others; spirituality or sense of meaning and purpose; and thinking about the future, hope, and mortality—are discussed here in detail. The general therapeutic goals of exploration in each domain are outlined, with suggested probes to initiate discussion. Case examples, which include potential therapeutic responses and non-CALM responses, are provided to enhance understanding of therapeutic intent within each domain.

This chapter considers the challenges of treatment decision-making for patients with incurable disease and the benefits of having a neutral space for reflection. Though respect for patients’ autonomy, shared decision-making, and informed consent are considered to be central to modern healthcare, adherence to these principles may seem illusory when patients are desperate and when the risks and benefits of treatment are ambiguous. The potential challenges to patient autonomy and informed consent are explored in this chapter, with particular reference to the context of phase one trials. In this setting, the intent of the treatment may easily be misconstrued by patients (therapeutic misconception) and the chances of benefits versus risks incorrectly estimated by them (therapeutic misestimation). This chapter explores the value of Managing Cancer and Living Meaningfully (CALM) in providing a neutral space for reflection and in allowing patients to explore their preferences regarding treatment while also considering the views of their healthcare providers and family members.

This chapter considers the phenomenon of posttraumatic growth (PTG) in the context of advanced cancer, drawing upon both theory and empirical research. The concept of PTG refers to improvements that have been postulated to occur in psychological, interpersonal, and spiritual domains as a result of successful coping with trauma. Various theoretical models of PTG are described and compared and the controversy as to whether PTG is a real, observable phenomenon is explored. The chapter specifically considers the unique emergence of PTG in advanced cancer, the measurement tools that have been used, and the methodological challenges of research examining this relationship. Finally, the potential of Managing Cancer and Living Meaningfully (CALM) to promote psychological growth in patients with advanced cancer is explored.

This chapter addresses the psychological impact of life-threatening disease of acute onset. Anxiety may be profound in this circumstance, with the severity of symptoms often meeting criteria for acute stress disorder (ASD) or posttraumatic stress disorder (PTSD) in both patients and family caregivers. The nature of traumatic stress and the ways in which it may be alleviated by Managing Cancer and Living Meaningfully (CALM) therapy are described here. Terror management theory (TMT), including the psychological pillars that protect individuals from the fear of death, is introduced as a model to understand how death anxiety is managed when mortality salience is heightened. The influence of TMT in formulating our research and in developing the CALM intervention is described here.

This chapter specifies the quantitative measures that are regularly administered as part of Managing Cancer and Living Meaningfully (CALM) and describes the role of ongoing peer supervision in CALM therapy. The value of administering quantitative measures assessing death anxiety, attachment security, depression, quality of life at the end of life, and perceived clinical benefit is described. The format of CALM supervision is outlined and the benefits of ongoing peer supervision for ensuring treatment integrity, fostering skill development, refining the intervention, and managing the tensions inherent in psychotherapeutic work in the context of advanced cancer are emphasized.

This chapter elucidates the concepts of mentalization and double awareness. Mentalization refers to the ability to reflect on and describe one’s own mental state and that of others and to connect feelings, thoughts, and beliefs to behaviours. This capacity varies amongst individuals and may fluctuate, based on the affective state, the relational context, and the nature of the conversation. Though it is often considered to be an individual capacity, we have argued that mentalization is a relational construct that is co-produced within therapeutic conversations. A mentalization-based therapy, such as CALM, can help patients to “think about their thinking,” and to consider multiple and alternate ways of viewing their situation. Mentalization may be supported by gentle invitations to patients to consider multiple perspectives and to expand the possibilities for living while facing the end of life, a capacity that we have termed “double awareness.” Using detailed conversation analysis, this chapter illustrates the process by which therapists encourage mentalization in CALM therapy.

This introduction outlines the structure of the Managing Cancer and Living Meaningfully (CALM) book and presents an overview of core CALM concepts and research. Part I of the book outlines the theoretical framework and research that has informed the development of CALM. Part II contains the CALM manual, which presents the specific content and process of CALM. Our path to the development of CALM is described and the four CALM domains are introduced alongside the CALM evidence base.

This chapter contextualizes Managing Cancer and Living Meaningfully (CALM) in relation to growing societal interest in the psychological impact of disease and the central role of healthcare providers in managing the threat of mortality and the end of life. There has been increasing recognition that the enormous investment in biotechnology and aggressive medical interventions for advanced disease has not been matched by complementary attention to the human dimensions of these conditions. There is now a growing public voice of patients and their families for more support in managing the psychological, emotional, and spiritual elements of advanced disease. The global palliative care movement emerged to address these unmet needs, but there has been less systematic attention in this field to the relief of psychological than physical suffering. CALM is a psychosocial intervention that is uniquely integrated with oncology and palliative care and focused on the psychological and social dimensions of advanced cancer.

This chapter contains case summaries and brief case examples, based on actual patients treated with Managing Cancer and Living Meaningfully (CALM), to illustrate the process of CALM therapy and the common issues that may arise. The case summaries, which include individual and couples-based cases, elucidate the process of CALM as it unfolds from the initial session to the final meeting. Brief case examples are also presented to highlight potential CALM challenges.

This chapter considers the qualitative and quantitative evidence base for Managing Cancer and Living Meaningfully (CALM) and the role of relevant, validated measures in substantiating its effectiveness and informing its clinical practice. The early qualitative evidence for the benefit of CALM is reviewed and the challenges inherent in generating meaningful quantitative results in an advanced cancer population are described. An important component of the early work on CALM included the development and validation of measures to assess relevant outcomes in this population. This resulted in development of new measures of distress related to death and dying and of perceived clinical benefit from CALM, and of modified measures for attachment security, quality of life, and treatment integrity. The results of a large randomized controlled trial (RCT) demonstrating the effectiveness of CALM are presented and the unique value of measures of treatment process and treatment integrity are described. Finally, the clinical utility of outcome and process measures in terms of guiding CALM therapy is considered.

This chapter outlines the engagement of both local and international colleagues with Managing Cancer and Living Meaningfully (CALM) and highlights its universal themes and applicability across various cultures and settings. The Global CALM program, which has trained thousands of individuals to date, is introduced and the keys to successful CALM implementation in international sites are presented. Finally, several current CALM research projects are summarized and the expanding international research supported by the Global CALM program is described.

This chapter delineates the features that have fostered success in Managing Cancer and Living Meaningfully (CALM) therapy. Patient characteristics, the format, session tasks, and process elements of CALM that have been associated with positive outcomes are described. The importance of the therapeutic relationship in the context of advanced and life-threatening disease, and the need for empathic attunement, genuineness, deep listening, emotional presence, and regular supervision and peer support are highlighted. General guidelines and tasks for the first, middle, and final session are outlined. Finally, the key elements of the CALM therapeutic process that contribute to its therapeutic effect are outlined.

This chapter discusses the central role of Managing Cancer and Living Meaningfully (CALM) training and supervision in refining the CALM intervention and in building a supportive community of peers for clinicians. The elements of CALM training are outlined. In both the introductory and advanced CALM workshops, actual cases have been vital in illustrating CALM content and process. Representative clinical encounters have been provided with the aid of trained actors or by presentation of actual videotaped CALM sessions. These workshops have been highly rated by trainees, with clinician attendees often feeling inspired and supported in their work as a result of CALM training. The benefits of CALM training are evident in the implementation of CALM in various settings in Asia, Europe, and in North and South America.

This chapter provides an overview of the foundational contributions of early leaders in psychosocial oncology and palliative care that informed the development of the Managing Cancer and Living Meaningfully (CALM) intervention. This includes the collective works of such pioneers as Kübler-Ross, Glaser and Strauss, and Pattison, which were instrumental in the development of psychosocial interventions such as CALM. The research conducted by our team with advanced cancer patients and their families over two decades is also described, highlighting the longitudinal Will to Live Study. In that study over 700 patients with advanced cancer were assessed at baseline and over 400 were followed longitudinally until the end of life, deepening our understanding of their experience over the trajectory of this disease. The findings of this research confirmed the need for an intervention such as CALM and helped to shape its nature and form.

This chapter provides an overview of the construct of attachment security and describes the threat to this security that may arise in response to the diagnosis or progression of advanced disease. The heightened mortality salience that occurs in this context activates the attachment system, and increased dependency and caregiving needs frequently require an adjustment or renegotiation of attachment security. Attachment security protects from death anxiety and other forms of distress, and so the renegotiation of attachment relationships is often an urgent task that is needed to maintain or restore emotional equilibrium. This chapter explains the central role of attachment security in the Managing Cancer and Living Meaningfully (CALM) intervention, in which the therapeutic relationship can provide a secure base to process distressing thoughts and feelings and to face the challenges that inevitably occur.