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Abstract Background Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients’ decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy. Methods Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis. Results The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants’ decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints. Conclusions Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.

Abstract Background Universal access to palliative care remains a distant goal in many low resource settings, despite the growing evidence of its benefits. The unmet need for palliative care is evident in Africa, but great strides in palliative care development have occurred in several African countries. Located in sub-Saharan Africa, Malawi has been regarded as an exemplar of progress in this area that is achievable in a low resource region. This scoping review examined the literature on the development and state of palliative care in Malawi according to the pillars of health care policy, medicine availability, education, implementation, research activity, and vitality of professionals and advocates. Methods A scoping review was conducted of the MEDLINE, Embase, Global Health, CINAHL, Web of Science and PsycINFO databases, as well as grey literature sources. Articles were included if they explored any aspect of palliative care in Malawi. Results 114 articles were identified that met the inclusion criteria. This literature shows that Malawi has implemented diverse strategies across all pillars to develop palliative care. These strategies include creating a national stand-alone palliative care policy; integrating palliative care into the curricula of healthcare professionals and developing training for diverse service providers; establishing systems for the procurement and distribution of opioids; implementing diverse models of palliative care service delivery; and launching a national palliative care association. Malawi has also generated local evidence to inform palliative care, but several research gaps were identified. Conclusions Malawi has made considerable progress in palliative care development, although initiatives are needed to improve medicine availability, access in rural areas, and socioeconomic support for patients and their families living with advanced disease. Culturally sensitive research is needed regarding the quality of palliative care and the impact of therapeutic interventions.

Abstract Background The COVID-19 pandemic and its containment measures have drastically impacted end-of-life and grief experiences globally, including those related to medical assistance in dying (MAiD). No known qualitative studies to date have examined the MAiD experience during the pandemic. This qualitative study aimed to understand how the pandemic impacted the MAiD experience in hospital of persons requesting MAiD (patients) and their loved ones (caregivers) in Canada. Methods Semi-structured interviews were conducted with patients who requested MAiD and their caregivers between April 2020 and May 2021. Participants were recruited during the first year of the pandemic from the University Health Network and Sunnybrook Health Sciences Centre in Toronto, Canada. Patients and caregivers were interviewed about their experience following the MAiD request. Six months following patient death, bereaved caregivers were interviewed to explore their bereavement experience. Interviews were audio-recorded, transcribed verbatim, and de-identified. Transcripts were analyzed using reflexive thematic analysis. Results Interviews were conducted with 7 patients (mean [SD] age, 73 [12] years; 5 [63%] women) and 23 caregivers (mean [SD] age, 59 [11] years; 14 [61%] women). Fourteen caregivers were interviewed at the time of MAiD request and 13 bereaved caregivers were interviewed post-MAiD. Four themes were generated with respect to the impact of COVID-19 and its containment measures on the MAiD experience in hospital: (1) accelerating the MAiD decision; (2) compromising family understanding and coping; (3) disrupting MAiD delivery; and (4) appreciating rule flexibility. Conclusions Findings highlight the tension between respecting pandemic restrictions and prioritizing control over the dying circumstances central to MAiD, and the resulting impact on patient and family suffering. There is a need for healthcare institutions to recognize the relational dimensions of the MAiD experience, particularly in the isolating context of the pandemic. Findings may inform strategies to better support those requesting MAiD and their families during the pandemic and beyond.

Objectives To assess the prevalence and drivers of distress, a composite of burnout, decreased meaning in work, severe fatigue, poor work–life integration and quality of life, and suicidal ideation, among nurses and physicians during the COVID-19 pandemic.Design Cross-sectional design to evaluate distress levels of nurses and physicians during the COVID-19 pandemic between June and August 2021.Setting Cardiovascular and oncology care settings at a Canadian quaternary hospital network.Participants 261 nurses and 167 physicians working in cardiovascular or oncology care. Response rate was 29% (428 of 1480).Outcome measures Survey tool to measure clinician distress using the Well-Being Index (WBI) and additional questions about workplace-related and COVID-19 pandemic-related factors.Results Among 428 respondents, nurses (82%, 214 of 261) and physicians (62%, 104 of 167) reported high distress on the WBI survey. Higher WBI scores (≥2) in nurses were associated with perceived inadequate staffing (174 (86%) vs 28 (64%), p=0.003), unfair treatment, (105 (52%) vs 11 (25%), p=0.005), and pandemic-related impact at work (162 (80%) vs 22 (50%), p

Abstract Background Family physicians' (FPs) long‐term relationships with their oncology patients position them ideally to provide primary palliative care, yet their involvement is variable. We examined perceptions of FP involvement among outpatients receiving palliative care at a cancer center and identified factors associated with this involvement. Methods Patients with advanced cancer attending an oncology palliative care clinic (OPCC) completed a 25‐item survey. Eligible patients had seen an FP within 5 years. Binary multivariable logistic regression analyses were conducted to identify factors associated with (1) having seen an FP for palliative care within 6 months, and (2) having a scheduled/planned FP appointment. Results Of 258 patients, 35.2% (89/253) had seen an FP for palliative care within the preceding 6 months, and 51.2% (130/254) had a scheduled/planned FP appointment. Shorter travel time to FP (odds ratio [OR] = 0.67, 95% confidence interval [CI] = 0.48–0.93, p = 0.02), the FP having a 24‐h support service (OR = 1.96, 95% CI = 1.02–3.76, p = 0.04), and a positive perception of FP's care (OR = 1.05, 95% CI = 1.01–1.09, p = 0.01) were associated with having seen the FP for palliative care. English as a first language (OR = 2.90, 95% CI = 1.04–8.11, p = 0.04) and greater ease contacting FP after hours (OR = 1.33, 95% CI = 1.08–1.64, p = 0.008) were positively associated, and female sex of patient (OR = 0.51, 95% CI = 0.30–0.87, p = 0.01) and travel time to FP (OR = 0.66, 95% CI = 0.47–0.93, p = 0.02) negatively associated with having a scheduled/planned FP appointment. Number of OPCC visits was not associated with either outcome. Conclusion Most patients had not seen an FP for palliative care. Accessibility, availability, and equity are important factors to consider when planning interventions to encourage and facilitate access to FPs for palliative care.

Introduction People with advanced non-small cell lung cancer (NSCLC) treated with immunotherapies (IT) or targeted therapies (TT) may have improved outcomes in a subset of people who respond, raising unique psychological concerns requiring specific attention. These include the need for people with prolonged survival to reframe their life plans and tolerate uncertainty related to treatment duration and prognosis. A brief intervention for people with advanced cancer, Managing Cancer and Living Meaningfully (CALM), could help people treated with IT or TT address these concerns. However, CALM has not been specifically evaluated in this population. This study aims to evaluate the acceptability and feasibility of CALM in people with advanced NSCLC treated with IT or TT and obtain preliminary evidence regarding its effectiveness in this population.Methods and analysis Twenty people with advanced NSCLC treated with IT or TT will be recruited from Peter MacCallum Cancer Centre, Melbourne, Australia. Participants will complete three to six sessions of CALM delivered over 3–6 months. A prospective, single-arm, mixed-methods pilot study will be conducted. Participants will complete outcome measures at baseline, post-intervention, 3 months and 6 months, including Patient Health Questionnaire, Death and Dying Distress Scale, Functional Assessment of Cancer Therapy General and Clinician Evaluation Questionnaire. The acceptability of CALM will be assessed using patient experiences surveys and qualitative interviews. Feasibility will be assessed by analysis of recruitment rates, treatment adherence and intervention delivery time.Ethics and dissemination Ethics approval has been granted by the Peter MacCallum Cancer Centre Human Research Ethics Committee (HREC/82047/PMCC). Participants with cancer will complete a signed consent form prior to participation, and carers and therapists will complete verbal consent. Results will be made available to funders, broader clinicians and researchers through conference presentations and publications. If CALM is found to be acceptable in this cohort, this will inform a potential phase 3 trial.

PURPOSEDespite advances in palliative care in Uganda, there has been relatively little recent patient-centered research investigating end-of-life outcomes in this region. We assessed the quality of dying and death of patients with cancer in hospice care in Uganda.METHODSBereaved caregivers of patients who received hospice care in Uganda and died 2-12 months earlier (N = 201) completed the Quality of Dying and Death Questionnaire, which includes 31 items and single-item ratings of overall quality of dying and moment of death, and the FAMCARE measure of family satisfaction with cancer care.RESULTSCaregivers reported low-intermediate overall quality of dying (mean [M] standard deviation [SD], 3.25 [2.98]) and overall quality of moment of death (M [SD], 3.59 [3.51]), with 47.0% of the ratings of these two outcomes in the poor range, but the mean family satisfaction with care was high (M [SD], 77.75 [10.26]). Most Quality of Dying and Death Questionnaire items (74.2%) were rated within the intermediate range. Items rated within the good range were religious-spiritual, interpersonal, and personal facets; two items within the poor range reflected physical functioning. Overall quality of dying was most strongly correlated with pain control (Spearman's rho [rs] = 0.45, P < .001), and overall quality of moment of death with state of consciousness before death and being unafraid of dying (rs = 0.42, P < .001). The FAMCARE score was not correlated with overall quality of dying or moment of death (P = .576-.813). Only one FAMCARE item, information on managing patient's pain, was correlated with overall quality of moment of death (rs = –0.19, P = .008).CONCLUSIONEnd-of-life care in hospices in Uganda requires further improvement, particularly with regard to symptom control. Patient-centered data could bolster advocacy efforts to support quality improvement of palliative care in this and other countries.

Introduction The diagnosis, progression or recurrence of cancer is often highly traumatic for family caregivers (FCs), but systematic assessments of distress and approaches for its prevention and treatment are lacking. Acute leukaemia (AL) is a life-threatening cancer of the blood, which most often presents acutely, requires intensive treatment and is associated with severe physical symptoms. Consequently, traumatic stress may be common in the FCs of patients with AL. We aim to determine the prevalence, severity, longitudinal course and predictors of traumatic stress symptoms in FCs of patients with AL in the first year after diagnosis, and to understand their lived experience of traumatic stress and perceived support needs.Methods and analysis This two-site longitudinal, observational, mixed methods study will recruit 223 adult FCs of paediatric or adult patients newly diagnosed with AL from two tertiary care centres. Quantitative data will be collected from self-report questionnaires at enrolment, and 1, 3, 6, 9 and 12 months after admission to hospital for initial treatment. Quantitative data will be analysed using descriptive and machine learning approaches and a multilevel modelling (MLM) approach will be used to confirm machine learning findings. Semi-structured qualitative interviews will be conducted at 3, 6 and 12 months and analysed using a grounded theory approach.Ethics and dissemination This study is funded by the Canadian Institutes of Health Research (CIHR number PJT 173255) and has received ethical approval from the Ontario Cancer Research Ethics Board (CTO Project ID: 2104). The data generated have the potential to inform the development of targeted psychosocial interventions for traumatic stress, which is a public health priority for high-risk populations such as FCs of patients with haematological malignancies. An integrated and end-of-study knowledge translation strategy that involves FCs and other stakeholders will be used to interpret and disseminate study results.

Abstract Background The 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. Methods A 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. Discussion This 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.

Introduction Evaluating 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 analysis This 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 dissemination The 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.

Background: Patients with heart failure have palliative care needs that can be effectively addressed by specialist palliative care (SPC). Despite this, SPC utilization by this patient population is low, suggesting barriers to SPC referral. We sought to determine the referral practices of cardiologists to SPC. Methods: Cardiologists 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 analyzed using multiple and logistic regression. Results: The response rate was 51% (551 of 1082). Between 35.1% and 64.2% of respondents were unaware of referral criteria to local SPC services. Of the respondents, 29% delayed SPC referral because of prognostic uncertainty, and 46.8% believed that SPC prioritizes patients with cancer. In actual practice, nearly three-fourths of cardiologists referred late. Referral frequency was associated with greater availability of SPC services for patients with nonmalignant diseases (P = 0.008), a higher number of palliative care settings accepting patients receiving continuous infusions or pursuing acute care management (P < 0.001), satisfaction with services (P < 0.001), and less equation of palliative care with end-of-life care (P < 0.001). Early timing of referral was associated with greater availability of SPC services for patients with nonmalignant diseases and less equation of palliative care with end-of-life care. Conclusions: The findings suggest that barriers to timely SPC referral include an insufficiency of services for patients with nonmalignant diseases especially in the outpatient setting, the perception that SPC services do not accept patients receiving cardiology-specific treatments, and a misperception about the identity of palliative care. Résumé: Contexte: Les services de soins palliatifs spécialisés (SPS) peuvent répondre efficacement aux besoins des patients présentant une insuffisance cardiaque. Malgré tout, les patients de cette population n’ont pas beaucoup recours aux SPS, ce qui semble indiquer la présence d’obstacles à l’orientation vers les SPS. Nous avons entrepris de déterminer les pratiques des cardiologues en matière d’orientation des patients vers les SPS. Méthodologie: Les cardiologues de partout au Canada ont été invités à participer à un sondage sur leurs pratiques en matière d’orientation des patients vers les SPS. Les associations entre ces pratiques et certaines caractéristiques démographiques, professionnelles et comportementales ont été analysées au moyen d’une régression multiple et logistique. Résultats: Le taux de participation au sondage a été de 51 % (551 réponses sur 1 082 invitations). Entre 35,1 et 64,2 % des répondants ne connaissaient pas les critères pour l’orientation des patients vers les services locaux de SPS. Parmi les répondants, 29 % ont dit reporter l’orientation vers les SPS en raison du caractère incertain du pronostic, et 46,8 % croyaient que les SPS s’adressaient en priorité aux patients atteints d’un cancer. Dans la pratique, près des trois quarts des cardiologues ont orienté tardivement les patients. La fréquence des orientations a été associée à une disponibilité plus grande de services de SPS pour les patients atteints de maladies non cancéreuses (p = 0,008), à un nombre plus élevé de milieux de soins palliatifs admettant les patients nécessitant des perfusions continues ou prenant en charge les soins actifs (p < 0,001), à la satisfaction à l’égard des services (p < 0,001) et à une assimilation moins importante des soins palliatifs avec les soins de fin de vie (p < 0,001). L’orientation rapide des patients était associée à une disponibilité plus grande de services de SPS pour les patients atteints de maladies non cancéreuses et à une assimilation moins importante des soins palliatifs avec les soins de fin de vie. Conclusions: Nos observations semblent indiquer que l’insuffisance des services destinés aux patients atteints de maladies non cancéreuses (en particulier dans le contexte des soins ambulatoires), la perception que les services de SPS n’admettent pas les patients nécessitant des traitements en cardiologie et la perception erronée de la finalité des soins palliatifs constituent des obstacles à l’orientation des patients vers les SPS en temps opportun.

Introduction Managing 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 analysis This 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 dissemination This 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 number UMIN000040032; Pre-results.

Abstract 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).

Abstract 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.

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.

IntroductionThe Managing Cancer and Living Meaningfully (CALM) therapy for patients with advanced cancer was tested against a supportive psycho-oncological counseling intervention (SPI) in a randomized controlled trial (RCT). We investigated whether CALM was delivered as intended (therapists’ adherence); whether CALM therapists with less experience in psycho-oncological care show higher adherence scores; and whether potential overlapping treatment elements between CALM and SPI can be identified (treatment differentiation).MethodsTwo trained and blinded raters assessed on 19 items four subscales of the Treatment Integrity Scale covering treatment domains of CALM (SC: Symptom Management and Communication with Health Care Providers; CSR: Changes in Self and Relationship with Others; SMP: Spiritual Well-being and Sense of Meaning and Purpose; FHM: Preparing for the Future, Sustaining Hope and Facing Mortality). A random sample of 150 audio recordings (75 CALM, 75 SPI) were rated on a three-point Likert scale with 1 = “adherent to some extent,” 2 = “adherent to a sufficient extent,” 3 = “very adherent.”ResultsAll 19 treatment elements were applied, but in various frequencies. CALM therapists most frequently explored symptoms and/or relationship to health care providers (SC_1: n_applied = 62; 83%) and allowed expression of sadness and anxiety about the progression of disease (FHM_2: n_applied = 62; 83%). The exploration of CALM treatment element SC_1 was most frequently implemented in a satisfactory or excellent manner (n_sufficient or very adherent = 34; 45%), whereas the treatment element SMP_4: Therapist promotes acknowledgment that some life goals may no longer be achievable (n_sufficient or very adherent = 0; 0%) was not implemented in a satisfactory manner. In terms of treatment differentiation, no treatment elements could be identified which were applied significantly more often by CALM therapists than by SPI therapists.ConclusionResults verify the application of CALM treatment domains. However, CALM therapists’ adherence scores indicated manual deviations. Furthermore, raters were not able to significantly distinguish CALM from SPI, implying that overlapping treatment elements were delivered to patients.

Patients with advanced cancer suffer from psychosocial distress that may impair quality of life and that may be ameliorated by psychotherapeutic treatment. We describe here the methodology of a randomized controlled trial (RCT) to assess the effectiveness of a novel, brief, semi-structured psychotherapeutic intervention to reduce distress and increase well-being in patients with advanced or metastatic cancer. The intervention, called Managing Cancer and Living Meaningfully (CALM), was originally developed in Canada and we are now testing its Italian adaptation (CALM-IT).The study is a single-blinded phase III RCT with assessment at baseline, 3 and 6 months with two conditions: CALM-IT versus a nonspecific supportive intervention (SPI). Eligibility criteria include: ≥ 18 years of age; fluency in the Italian language; no cognitive deficit, and diagnosis of advanced or metastatic cancer with an expected survival of 12–18 months. CALM-IT includes up to 12 sessions, delivered over 6 months and covers 4 domains: i) Symptom Management and Communication with Health Care Providers; ii) Changes in Self and Relations with Close Others; iii) Sense of Meaning and Purpose; and iv) the Future and Mortality. The primary outcome is difference in severity of depressive symptoms between treatment arm and the primary endpoint is 6 months. The secondary endpoint is 3 months and secondary outcomes are: generalized anxiety, distress about dying and death, demoralization, spiritual well-being, attachment security, posttraumatic growth, communication with partners, quality of life, and satisfaction with clinical care.If shown to be effective, CALM-IT can be implemented nationally to relieve distress and to promote psychological well-being in patients with advanced cancer.

Abstract Background A desire to die (DD) is frequent in palliative care (PC). However, uncertainty remains as to the appropriate therapeutic response. (Proactive) discussion of DD is not usually part of standard care. To support health practitioners' (HPs) reactions to a patient’s DD, a training program has been developed, piloted and evaluated. Within this framework, a first draft of a semi-structured clinical interview schedule with prompts (CISP) has been developed, including recommendations for action to support HPs’ self-confidence. The aim of this study is the further development of the CISP to support routine exploration of death and dying distress and proactive addressing of a DD. Methods This observatory, prospective health services study comprises a three step study design: 1. Revision of the CISP and consensus finding based on semi-structured interviews with patients and a Delphi process with (inter-)national experts, patient representatives and relatives; 2. Increasing confidence in HPs through a 2 day-training program using the consented CISP; 3. A formative quantitative evaluation of conversations between HPs and patients (300 palliative patients at three time points) and a qualitative evaluation based on interview triads of patients, relatives and HPs. The evaluation of conversations will include patient-oriented outcomes, including perceived relationships with HPs and death and dying distress. We will also consider aspects of social inequality and gender. Discussion The intervention can provide a framework for open discussion of DD and a basis for enhancing a trustful HP-patient relationship in which such difficult topics can be addressed. The benefits of this study will include (a) the creation of the first consented semi-structured approach to identify and address DD and to respond therapeutically, (b) the multi-professional enhancement of confidence in dealing with patients’ DD and an intervention that can flexibly be integrated into other training and education programs and (c) an evaluation of effects of this intervention on patients, relatives and HPs, with attention to social inequality and gender. 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).

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.

Since the 2015 Canadian legalization of medical assistance in dying (MAiD), many Canadian music therapists have become involved in the care of those requesting this procedure. This qualitative study, the first of its kind, examines the experience of music therapy within MAiD, exploring lived experience from three perspectives: the patient, their primary caregiver, and the music therapist/researcher. Overall thematic findings of a hermeneutic phenomenological analysis of ten MAiD cases demonstrate therapeutically beneficial outcomes in terms of quality of life, symptom management, and life review. Further research is merited to continue an exploration of the role of music therapy in the context of assisted dying.

[This corrects the article DOI: 10.1371/journal.pone.0146184.].

BACKGROUND:The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. METHODS:Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. FINDINGS:All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. CONCLUSIONS:This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.

BACKGROUND: Pain is a common and debilitating symptom experienced by cancer patients of all ages. Cancer pain is associated with elevated levels of depression; however, age-related patterns in this relationship remain unclear. This information is important to provide effective palliation of pain and depression to the growing numbers of older cancer patients.

BackgroundAdjuvant treatment with radioactive iodine (RAI) is often considered in the treatment of well-differentiated thyroid carcinoma (WDTC). We explored the recollections of thyroid cancer survivors on the diagnosis of WDTC, adjuvant radioactive iodine (RAI) treatment, and decision-making related to RAI treatment. Participants provided recommendations for healthcare providers on counseling future patients on adjuvant RAI treatment.MethodsWe conducted three focus group sessions, including WDTC survivors recruited from two Canadian academic hospitals. Participants had a prior history of WDTC that was completely resected at primary surgery and had been offered adjuvant RAI treatment. Open-ended questions were used to generate discussion in the groups. Saturation of major themes was achieved among the groups.FindingsThere were 16 participants in the study, twelve of whom were women (75%). All but one participant had received RAI treatment (94%). Participants reported that a thyroid cancer diagnosis was life-changing, resulting in feelings of fear and uncertainty. Some participants felt dismissed as not having a serious disease. Some participants reported receiving conflicting messages from healthcare providers on the appropriateness of adjuvant RAI treatment or insufficient information. If RAI-related side effects occurred, their presence was not legitimized by some healthcare providers.ConclusionsThe diagnosis and treatment of thyroid cancer significantly impacts the lives of survivors. Fear and uncertainty related to a cancer diagnosis, feelings of the diagnosis being dismissed as not serious, conflicting messages about adjuvant RAI treatment, and treatment-related side effects, have been raised as important concerns by thyroid cancer survivors.