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Purpose: To evaluate high-risk histopathological features (HRHF) following primary enucleation of eyes with retinoblastoma (RB) and assess the patient outcomes across continents., Methods: Retrospective study of 1426 primarily enucleated RB eyes from five continents., Results: Of all, 923 (65%) were from Asia (AS), 27 (2%) from Australia (AUS), 120 (8%) from Europe (EUR), 162 (11%) from North America (NA), and 194 (14%) from South America (SA). Based on the continent (AS vs. AUS vs. EUR vs. NA vs. SA), the histopathology features included massive choroidal invasion (31% vs. 7% vs. 13% vs. 19% vs. 27%, p=0.001), post-laminar optic nerve invasion (27% vs. 0% vs. 16% vs. 21% vs. 19%, p=0.0006), scleral infiltration (5% vs. 0% vs. 4% vs. 2% vs. 7%, p=0.13), and microscopic extrascleral infiltration (4% vs. 0% vs. <1% vs. <1% vs. 4%, p=0.68). Adjuvant chemotherapy with/without orbital radiotherapy was given in 761 (53%) patients. Based on Kaplan-Meier estimates in different continents (AS vs. AUS vs. EUR vs. NA vs. SA), the 6-year risk of orbital tumor recurrence was 5% vs. 2% vs. 0% vs. 0% vs. 12% (p<0.001), systemic metastasis was reported in 8% vs. 5% vs. 2% vs. 0% vs. 13% (p=0.001), and death in 10% vs. 3% vs. 2% vs. 0% vs. 11% (p<0.001) patients., Conclusion: There is a wide variation in the infiltrative histopathology features of RB across continents, resulting in variable outcomes. SA and AS had a higher risk of orbital tumor recurrence, systemic metastasis, and death compared to AUS, EUR, and NA., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the Opthalmic Communications Society, Inc.)

Adult T-cell leukemia-lymphoma (ATLL) is an aggressive Human T-cell Leukemia Virus Type 1 (HTLV-1)-driven malignancy. Although Western hemisphere (Afro-Caribbean and South American) patients face worse prognoses, our understanding of ATLL molecular drivers derives mostly from Japanese studies. We performed multi-omic analyses to elucidate the genomic landscape of ATLL in Western cohorts. Recurrent deletion and/or damaging mutations involving FOXO3, ANKRD11, DGKZ, and PTPN6 implicate these genes as potential tumor suppressors. RNA-seq, published functional data and in vitro assays support the roles of ANKRD11 and FOXO3 as regulators of T-cell proliferation and apoptosis in ATLL, respectively. Survival data suggest ANKRD11 mutation may confer a worse prognosis. Japanese and Western cohorts, in addition to acute and lymphomatous subtypes, demonstrated distinct molecular patterns. GATA3 deletion was associated with unfavorable chronic cases. IRF4 and CARD11 mutations frequently emerged in relapses after interferon therapy. Our findings reveal novel putative ATLL driver genes and clinically relevant differences between Japanese and Western ATLL patients.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men., Objectives: This study explored multiple views on the family's role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers' points of view., Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites., Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger-Davidhizar-Haff's model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers' field notes, were translated into English for international collaborative analysis., Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families' active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care., Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved., Competing Interests: The authors declare that there is no conflict of interest., (© The Author(s), 2024.)

Objective: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations., Methods: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts., Results: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying., Conclusion: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence., Innovation: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use., Competing Interests: Sissel Guttormsen reports financial support was provided by Swiss Cancer Research Foundation (KFS-4522-08-2018). If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Author(s).)

Background: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person., Methods: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration., Results: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%). We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied., Conclusions: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.

Objectives: Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders., Methods: Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups ( n  = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically., Results: Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others., Significance of Results: Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.

Background: Communities and local governments invest in compassionate communities (CCs) a great deal of time, money, effort, and work. However, it is not known whether the CCs are having the effect they are expected to have, so the value of continuing with these initiatives is unknown, and there is a need for a model for evaluating CCs to solve the question., Objectives: To identify a set of core outcomes or benefits that should be measured to assess the impact of the CCs., Design: Multiple-methods study involving three communities, each in a different country (Argentina, Colombia, and Switzerland)., Methods and Analysis: To identifying the set of core outcomes, which is the first step in developing the CC evaluation model, five phases will follow: online meetings, literature review, fieldwork, Delphi survey, and social transfer. We will involve members of the local communities of Bern, Buenos Aires, and Medellin at three different levels: (1) citizens (e.g. patients, caregivers, and family members), (2) organizations and institutions involved in the program implementation (e.g. health care organizations, churches, non-governmental organizations, and schools), and (3) political and governmental sectors., Ethics: The study will be conducted following existing international regulations and guidance such as the Declaration of Helsinki. The ethics committee of Pallium Latin America and the ethics committee of the canton of Bern considered our application exempt from the need for approval. Ethics approval in Bern and Buenos Aires is in the process of being obtained. The ethics committee of the Pontifical Bolivarian University approved this protocol., Discussion: We expect that this project will help bridge the gap in knowledge regarding the measurable impact of the CCs and enhance more CC development., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s), 2023.)

The seventh session of the Oncological Pathology Conference (JoPaO) entitled 'Pathological Anatomy in the context of the National Cancer Law: An overview of the Latin American experience', was held virtually on July 15, 22 and 23. Peru was the headquarters for this event, where 17 national and international professors of high academic standing participated. They interacted in a multidisciplinary context through talks with national panellists and the general public. The recent promulgation of the 'National Cancer Law' fosters the development of discussion forums to analyse the national realities and uphold continuous learning about experiences in other Latin American countries with successful cancer programmes, in which pathology holds a principal role. The topics addressed during this JoPaO included the exchange of Latin American cancer management experiences, an emphasis on investments in and the development of strategic plans to improve care, the use of new technologies, laboratory quality control, and the need to advance scientific research., Competing Interests: The authors declare that there are no conflicts of interest., (© the authors; licensee ecancermedicalscience.)

Background: There are increasing calls to establish heart failure (HF) clinics due to their effectiveness in the interdisciplinary management of people living with HF. However, although a recommendation exists for palliative care (PC) providers to be part of the interdisciplinary team, few of the established HF clinics include them in their teams. Therefore, in this qualitative study, we aimed to understand the unmet PC needs of patients with HF attending an already established HF clinic., Methods: Secondary qualitative analysis of structured interviews undertaken within a larger study to validate the German version of the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF). The NAT: PD-HF is a tool that aims to assess unmet needs in patients with HF. The interviews took place between January and March 2020 with patients from the ambulatory HF Clinic of a University Hospital in Switzerland. For this analysis, we transcribed and thematically analyzed the longest and most content-rich interviews until we reached data saturation at 31 participants. The interviews lasted 31 min on average (24-48 min)., Results: Participants ( n = 31) had a median age of 64 years (IQR 56-77), the majority had reduced ejection fraction, were men, and were classified as having a New York Heart Association functional class II. Participants were in general satisfied with the treatment and information received at the HF clinic. However, they reported several unmet needs. We therefore identified three ambivalences as main themes: (I) "feeling well-informed but missing essential discussions", (II) "although feeling mostly satisfied with the care, remaining with unmet care needs", and (III) "fearing a referral to palliative care but acknowledging its importance"., Conclusion: Although patients who are receiving multidisciplinary management in ambulatory HF clinics are generally satisfied with the care received, they remain with unmet needs. These unmet needs, such as the need for advance care planning or the need for timely and tactful end-of-life discussions, can be fulfilled by PC providers. Including personnel trained in PC as part of the multidisciplinary team could help to address patients' needs, thus improving the quality of care and the quality of life of people living with HF., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Gonzalez-Jaramillo, Maessen, Luethi, Guyer, Hunziker, Eychmüller and Zambrano.)

Background: The public's view of palliative care often involves its potential to improve of quality-of-life as well as its use as a last resource prior to death., Objective: To obtain an idea of the image of palliative care held by the public in the German-speaking part of Switzerland, the authors sought to understand (1) the perceptions of palliative care and the (2) elements important when thinking about their own end of life., Methods and Sample: A qualitative design with an inductive reasoning approach based on Mayring (2014) was chosen. Visitors at an exhibition about palliative care in six locations provided hand-written answers on provided cards to two statements: (1) if I hear the term 'Palliative Care' I think of … and (2) when thinking about my own end of life, the following is important to me …., Results: Answers of 199 visitors (mean age 52, mostly in a good/very good health status) were analysed. In response to hearing the term palliative care, six areas were categorized: (1) the main focus; (2) ways of providing palliative care; (3) the best timing; (4) places where palliative care is provided; (5) who is seen as provider and (6) outcomes of palliative care. Five categories to the statement about their own end-of-life were identified: (1) the ability to look back on a fulfilled life and being satisfied; (2) maintaining trusting relationships until the end; (3) organizing affairs and having everything settled; (4) having their family being cared for and (5) relief of suffering with the support of knowledgeable people., Conclusion: Palliative care was mostly associated with positive terms acknowledging an interprofessional approach. Maintaining one's dignity as well as dying without suffering pointed at the persisting stigma that palliative care is mainly limited to end-of-life care. The results may help healthcare professionals to better understand how the public view palliative care., Competing Interests: Conflict of interest statement: The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article., (© The Author(s) 2021.)

Objectives: Evidence for the positive impact of the early integration of palliative care (EPC) continues to grow. Less is known about how EPC improves patient and family outcomes, including the content of EPC consultations. Therefore, we aimed to better understand the content of EPC consultations including areas addressed, percentage covered per area and interaction style., Methods: As part of a trial in which EPC in addition to oncology care was compared with oncology care alone, we audio recorded 10 interventions. The palliative care team led the interventions using SENS, a conversation structure, which stands for: Symptoms, End-of-life decision-making, Network and Support. We employed two approaches to analysis: the Roter interaction analysis system (RIAS) to analyse interaction dynamics and SENS as a framework for content analysis., Results: Physician-patient communication covered 91% of the interaction. According to RIAS, the consultations were evenly dominated between physicians and patients (ratio=1.04) and highly patient-centred (ratio=1.26). Content wise, rapport was the largest category covering 27% of the consultation, followed by decision-making (21%) and by symptom assessment/management (17%) including 8.1% for physical symptoms and 5.4% for psychosocial aspects. Network discussions covered 17%, and lastly, support for the family 7%., Conclusions: EPC consultations cover a variety of end-of-life topics while putting a high value in establishing rapport, developing a relationship with patients, and on providing reassurance and positive emotional talk. EPC consultations using predefined structures may guarantee that a minimum of important aspects are addressed in a way in which the relationship with the patient remains at the centre., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person., Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set., Discussion: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Background: More than 180 single nucleotide polymorphisms (SNPs) associated with breast cancer susceptibility have been identified; these SNPs can be combined into polygenic risk scores (PRS) to predict breast cancer risk. Because most SNPs were identified in predominantly European populations, little is known about the performance of PRS in non-Europeans. We tested the performance of a 180-SNP PRS in Latinas, a large ethnic group with variable levels of Indigenous American, European, and African ancestry., Methods: We conducted a pooled case-control analysis of US Latinas and Latin American women (4658 cases and 7622 controls). We constructed a 180-SNP PRS consisting of SNPs associated with breast cancer risk (P < 5 × 10-8). We evaluated the association between the PRS and breast cancer risk using multivariable logistic regression, and assessed discrimination using an area under the receiver operating characteristic curve. We also assessed PRS performance across quartiles of Indigenous American genetic ancestry. All statistical tests were two-sided., Results: Of 180 SNPs tested, 142 showed directionally consistent associations compared with European populations, and 39 were nominally statistically significant (P < .05). The PRS was associated with breast cancer risk, with an odds ratio per SD increment of 1.58 (95% confidence interval [CI = 1.52 to 1.64) and an area under the receiver operating characteristic curve of 0.63 (95% CI = 0.62 to 0.64). The discrimination of the PRS was similar between the top and bottom quartiles of Indigenous American ancestry., Conclusions: The 180-SNP PRS predicts breast cancer risk in Latinas, with similar performance as reported for Europeans. The performance of the PRS did not vary substantially according to Indigenous American ancestry., (© The Author(s) 2019. Published by Oxford University Press.)

Objective: We aimed to explore the return to work (RTW) experience of individuals in remission from extremital sarcoma., Methods: Using a qualitative survey design, we asked sarcoma survivors about their RTW experiences after treatment. Seven men and eight women (n = 15), 43 years old in average, participated. The majority had soft tissue sarcoma (n = 14) and no amputations (n = 14). We analysed data thematically through an inductive approach., Results: Participants' motivation to RTW and their experiences of this transition could be understood under the main theme of "searching for distraction and wanting to leave the disease behind," followed by "problems of the new normal." RTW was the next step after treatment; however, being back at the same workplace/institution was challenging due to the interference of the effects of the disease and treatments and peer perceptions. In other subthemes, we identified that RTW was facilitated by different "signs of readiness," as well as by "motivating factors and the meaning of having an occupation.", Conclusions: Readiness to RTW while primarily an autonomous decision can also be guided by third parties, including treating physicians. RTW can be challenging, since changes in performance as well as comments from peers become a constant reminder of the status prior to the illness. Given that RTW helps distract from the disease, these reminders can be confronting and highlight the role of health professionals and employers in preparing survivors and peers to facilitate the RTW., (© 2020 John Wiley & Sons, Ltd.)

Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored. Objective: To explore how PC researchers/academics perceive the term is the objective of this study. Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis. Participants: Academics and researchers in PC were the participants in this study. Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve. Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.

Context: Although the number of studies on the economic impact of palliative care (PC) is growing, the great majority report costs from North America., Objectives: We aimed to provide a comprehensive overview of PC hospital cost components from the perspective of a European mixed funded health care system by identifying cost drivers of PC and quantifying their effect on hospital costs compared to usual care (UC)., Methods: We performed a retrospective, observational analysis examining cost data from the last hospitalization of patients who died at a large academic hospital in Switzerland comparing patients receiving PC vs. UC., Results: Total hospital costs were similar in PC and UC with a mean difference of CHF -2777 [95% CI -12,713 to 8506, P = 0.60]. Average costs per day decreased by CHF -3224 [95% CI -3811 to -2631, P < 0.001] for PC patients with significant reduction of costs for diagnostic intervention and medication. Higher cost components for PC patients were catering, room, nursing, social counseling, and nonmedical therapists. In sensitivity analyses, when we restricted PC exposure to three days from admission, total costs and average costs per day were significantly lower for PC., Conclusion: Studies measuring the impact of PC on hospital costs should analyze various cost components beyond total costs to understand wanted and potentially unwanted cost-reducing effects. An international definition of a set of cost components, specific for cost-impact PC studies, may help avoid superficial and potentially dangerous cost discussions., (Copyright © 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Health professionals' bereavement practices, including funeral attendance, have attracted relatively little attention from researchers. There may be a number of motivations and perceived benefits for health professionals to attend patient funerals. There are no published data comparing different groups of health professionals' perceptions of and practices in attending the funerals of their patients., Objective: To understand the attitudes and practices of health professionals toward attendance at patient funerals., Design: Cross-sectional nationwide online survey of attitudes and practices toward attendance at patient funerals based upon data from interviews with health professionals., Participants: Australian health practitioners from medicine, nursing, psychology, social work, and other allied health professions (n = 1098)., Results: Attendance at patient funerals was predicted by age, telling colleagues about own funeral attendance practices, having discussions with colleagues about funeral attendance, having long relationships with patients, and having a majority of patients at the end of life. Nonattendance was predicted by believing that if they cannot attend all funerals, they prefer not to attend any, feeling that colleagues disapprove of funeral attendance, believing that attending funerals is crossing the line between the personal and the professional, and being a psychologist., Conclusions: Our findings emphasize the need for more open discussions and reflection among individuals and groups of health practitioners regarding attendance at funerals. Understanding the motivations of physicians, nurses, social workers, and other allied health practitioners to attend or not attend patient funerals is an important first step in working toward policies, protocols, and guidelines to support best practice.

Patients with DICER1 predisposition syndrome have an increased risk to develop pleuropulmonary blastoma, cystic nephroma, embryonal rhabdomyosarcoma, and several other rare tumor entities. In this study, we identified 22 primary intracranial sarcomas, including 18 in pediatric patients, with a distinct methylation signature detected by array-based DNA-methylation profiling. In addition, two uterine rhabdomyosarcomas sharing identical features were identified. Gene panel sequencing of the 22 intracranial sarcomas revealed the almost unifying feature of DICER1 hotspot mutations (21/22; 95%) and a high frequency of co-occurring TP53 mutations (12/22; 55%). In addition, 17/22 (77%) sarcomas exhibited alterations in the mitogen-activated protein kinase pathway, most frequently affecting the mutational hotspots of KRAS (8/22; 36%) and mutations or deletions of NF1 (7/22; 32%), followed by mutations of FGFR4 (2/22; 9%), NRAS (2/22; 9%), and amplification of EGFR (1/22; 5%). A germline DICER1 mutation was detected in two of five cases with constitutional DNA available. Notably, none of the patients showed evidence of a cancer-related syndrome at the time of diagnosis. In contrast to the genetic findings, the morphological features of these tumors were less distinctive, although rhabdomyoblasts or rhabdomyoblast-like cells could retrospectively be detected in all cases. The identified combination of genetic events indicates a relationship between the intracranial tumors analyzed and DICER1 predisposition syndrome-associated sarcomas such as embryonal rhabdomyosarcoma or the recently described group of anaplastic sarcomas of the kidney. However, the intracranial tumors in our series were initially interpreted to represent various tumor types, but rhabdomyosarcoma was not among the typical differential diagnoses considered. Given the rarity of intracranial sarcomas, this molecularly clearly defined group comprises a considerable fraction thereof. We therefore propose the designation "spindle cell sarcoma with rhabdomyosarcoma-like features, DICER1 mutant" for this intriguing group.

Caring for patients at the end of life: Experiences and needs of physicians Abstract. In the context of death and dying, physicians are challenged in many different ways, not only professionally but also personally. Physicians are described as having a hard time accepting the finality of life. Medical practitioners find difficulties balancing their emotional involvement and their anxiety in facing death. Many specialists focus their treatment on pressing physiological problems at the time of acute crises, and have difficulty accepting that the limits of treatment effectiveness have been reached. This manuscript provides an overview of the aspects that characterise physicians' attitudes, experiences and needs when dealing with dying patients, with a view to provide information on useful approaches to communication at the end of life, as well as to encourage the development of strategies to better integrate end of life conversations and self-care practices into everyday practice. Medical training has favoured overtime a detached approach to emotions and death and dying as an isolating experience. While some patient deaths may be more confronting than others, and some conversations more difficult to start than others, turning the view to oneself can help to not only understand where the discomfort comes from, but also to improve communication patterns, stay healthy, and derive job satisfaction. By sharing perspectives and learning how other colleagues deal with similar issues, there is an opportunity for medical practitioners to develop a well-rounded approach to dealing with death and dying, which may enhance personal and professional relationships and may ultimately influence future generations of medical practitioners, as well as societal expectations.

The appropriateness of attending a patient's funeral is a medical dilemma. This article focuses on 437 doctors who participated in an online survey. Seventy-one percent of general practitioners, 67% of oncologists, 67% of psychiatrists, 63% of palliative medicine specialists, 52% of surgeons, and 22% of intensive care specialists had attended patient funerals. Significant differences in demographics and between specialties were identified in terms of barriers and benefits associated with attendance. Although attendance is a personal decision, there is a need for open discussions in medical education and professional development concerning death and the role of doctors after a patient dies.

Purpose of Review: The aim of this review is to critically appraise the existing evidence on 'early palliative care' (EPC), discuss its relationship with advance care planning, and to reflect on the impact of EPC on the quality of care provided during the last days of life., Recent Findings: There are indicators that EPC may help to avoid aggressive treatment, shorten hospital stay, improve overall quality of life, and to see more frequently dying and death at the preferred place of care., Summary: The evidence from randomized controlled trials supports the integration of palliative care early in the disease trajectory. However, in terms of outcomes and quality indicators for care in the last days of life, evidence is still lacking. Predominantly, when it comes to the outcomes which may be more difficult to assess, such as spiritual aspects, or the social network, for which more comprehensive information is needed. These outcomes should not be neglected in palliative care studies, particularly when they can provide meaningful information about patient and family adjustment, and focus on psychosocial aspects rather than physical symptom control.

Background: Dying physicians may present unique challenges to palliative care teams. Studies of dying physicians are scarce, but those that exist suggest a potential absence of a coordinating clinician, prolongation of curative treatments, resistance to palliative care input and barriers to discussing psychosocial needs., Aim: The aim was to describe and examine the care provided to physician-patients referred to an Australian palliative care service, and to identify issues faced by the physician-patient and by the treating team., Design and Participants: A retrospective case-note audit of the case notes of medical practitioners referred for palliative care and dying between January 2007 and April 2013 was conducted., Results: There was evidence of medically qualified friends or family members initiating referrals and directing treatment decisions. There was some evidence of increased consultant-led decision-making and bypassing of usual referral pathways and systems for providing after-hours advice and calling consultants directly. There also appeared to be some reluctance by junior doctors to make decisions, because of the patient's desire for consultant-level advice only., Conclusion: This study adds to the growing body of literature that identifies the potential difficulties associated with caring for medical practitioners. By understanding some of the complexity of this particular doctor-patient relationship, clinicians can approach the management of physician-patients facing the end of their lives with a more sound understanding of their particular care needs., (© The Author(s) 2016.)

Although Australians on average consume large quantities of meat, their attitudes to farm animal welfare are poorly understood. We know little about how farm animal production is discussed in Australian households or how children learn about the origins of meat. This study consisted of an online survey completed by 225 primary carers throughout Australia recruited through social media. Findings include that conversations about the origin of meat were generally stimulated by meal preparation within the home rather than visits to agricultural shows or similar activities. Parents preferred to initiate conversations with children about meat production before they were 5 years of age. Urban parents were more likely than rural parents to reveal that they were conflicted about eating meat and would be more empathetic to children who chose to stop eating meat. Rural parents were more likely than urban parents to feel that children should eat what they are given and that talking about meat is not a major issue. Both groups felt that it was important that children should know where their food comes from. The findings of this study suggest that parental attitudes to meat production and consumption influence conversations about meat origins with children., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Purpose: To explore how junior doctors (doctors in postgraduate training) retrospectively perceived the influence of their undergraduate palliative care attachments (clinical electives) on their current medical practice., Method: From 2008 to 2013, 100 students participated in palliative care attachments at the University of Adelaide School of Medicine. In 2013, the authors invited 14 of these, now junior doctors, to be in this study. Participants took part in one-on-one, semistructured interviews. Interview data were analyzed for themes., Results: Nine junior doctors participated. They were sent a summary of the findings to check whether the themes captured each participant's experiences. Eight replied and agreed. Two main themes were identified: (1) from apprehension to gaining a sense of control, and (2) gaining perspective on the practice of medicine. Participants perceived that the learning experiences from the attachments provided them with a sense of confidence and control over their interactions with dying patients and families. This positive influence not only was present when caring for patients at the end of life but also influenced the participants' identity as medical practitioners., Conclusions: Findings suggest that junior doctors trained earlier in palliative care have enhanced competencies of professionalism, patient-centered medicine, psychosocial and spiritual aspects of palliative care, communication, teamwork, and self-awareness. Learning a palliative approach can help them make a difference in treating dying patients, but also in general patient care. Therefore, physicians trained in palliative care may be better prepared to contribute to a health care system that is person-centered, ethically conscientious, and personally fulfilling.

This article presents a comprehensive critical review of the peer-reviewed literature on palliative care and companion animals (CAs), reporting on the evidence and knowledge base regarding CAs and their role for people at end of life. PubMed, PsycINFO, Medline, Scopus, and Google Scholar were searched for studies pertaining to CAs, end of life, and hospice palliative care. Six studies dealt specifically with empirical research. The remaining literature addressed the topic peripherally or anecdotally. The evidence for efficacy and the knowledge base about the role of CAs at end of life in hospice and palliative care is weak. Further efforts are required to study the conditions under which CAs may be beneficial for patient care, including acceptability to staff, family, and other patients, and with consideration of welfare for the animals involved., (© The Author(s) 2013.)

Objectives: Research on the experiences, coping mechanisms, and impact of death and dying on the lives of palliative medicine specialists is limited. Most research focuses on the multidisciplinary team or on nurses who work with the dying. Fewer studies consider medical professionals trained in palliative medicine. This study aimed to explore the experiences, coping mechanisms, and impact of death and dying on palliative medicine specialists when dealing with their patients at the end of life., Methods: A qualitative research approach guided the study, one-on-one interview data were analyzed thematically. A purposeful sampling technique was employed for participant recruitment. Seven palliative medicine specialists practicing in one city participated in open-ended, in-depth interviews., Results: The analysis of participants' accounts identified three distinct themes. These were Being with the dying, Being affected by death, and dying and Adjusting to the impact of death and dying., Significance of Results: This study further contributes to the understanding of the impact of death and dying on professionals who care for dying patients and their families. Despite the stressors and the potential for burnout and compassion fatigue, these participants employed strategies that enhanced meaning-making and emphasized the rewards of their work. However, the consequences of work stressors cannot be underestimated in the practice of palliative care.

Background: The present qualitative study explores surgeons' experiences and coping mechanisms with the death of their patients in the context of life-limiting illnesses., Methods: Nine Australian surgeons participated in in-depth interviews. Thematic analysis of the interview transcriptions allowed for identification of themes and subthemes. Methodological trustworthiness and rigor were preserved at all stages of the research process., Results: The essence of surgical practice, comprising participants' descriptions of their identity as surgeons, influenced their experiences and coping mechanisms when dealing with death and dying. The following subthemes were identified: distancing from patients, wanting to fix problems, doing in terms of operating on a patient, prominence of the surgeon's personal ability, and high personal responsibility for patient outcomes. Giving hope and having a mixed surgical practice were some of the coping mechanisms described by participants., Discussion: Death and dying are a part of surgical practice, and surgeons face challenges as they care for dying patients. Although participants stated that they felt less affected by dealing with patients dying of life-limiting illnesses than by unexpected deaths, their descriptions of their encounters, reactions, and behaviors, as well as their use of language, suggest that these deaths have a lasting impact. Potential areas for improvement of surgical practice and approaches to teaching about death and dying in surgery are addressed. Furthermore, the results of this study suggest the need to expand research in this area.

Objectives: This paper reports on qualitative data exploring the experiences and coping mechanisms of medical specialists from the specialties of intensive care, surgery, oncology and palliative care, when dealing with death and dying and their emotional connection with dying patients in the context of a life-threatening illness., Methods: Thirty-three semi-structured individual interviews were analysed using thematic analysis., Results: One of the key themes of medical specialists' experiences with death and dying was their ambivalence about developing emotional connections with patients and families. Advantages of not engaging emotionally with patients were related to preserving objectivity in the decision making process, while a perceived disadvantage was the loss of the opportunity to engage in meaningful relationships that could positively influence patients, families and the medical specialist. Finding a balance in the face of ambivalence was a preferred approach and participants employed a variety of coping strategies., Conclusions: Participants took different positions about the emotional connection that should develop with their dying patients and their families. Although there was agreement about finding a balance between objectivity and connection, their strategies for achieving this seem to be subjective and prescribed by individual notions. By sharing perspectives and learning how other colleagues deal with similar issues, there is an opportunity for medical practitioners to develop a well-rounded approach to dealing with death and dying, which may enhance personal and professional relationships and may ultimately influence future generations of medical practitioners.

A grounded theory study was undertaken to understand how general practitioners (GPs) experience the death of their patients. Eleven GPs participated in semistructured interviews. The participants explained their experience of a patient's death using the "death journey" metaphor. This journey, the Journey with the Dying, could be described from 5 different moments in the participants' encounters with people who are dying: private acknowledgement, communication of prognosis, continuity of care, the moment of death, and looking after the family. Emotional responses for each of the stages, and coping strategies in general, were outlined. GPs' narratives about professional identity, learning about dying and death, and death beliefs were also important in the Journey with the Dying. The experience of death described by the GPs in this study was different from that reported by medical doctors in other care settings. The 5 phases of the Journey with the Dying identified here show the different adjustments and appraisals that GPs undertake to comprehend and to be able to work in the presence of death.

Negative preconceived beliefs about the benefits of morphine use are frequently seen in hospitalized patients and may be associated with reports of severe pain, poor patient satisfaction, impaired rehabilitation, and possibly more chronic postsurgical pain. In some patients, providing information through instructive leaflets may modify negative beliefs that limit proper medication use. The purpose of this study was to determine whether the morphine-related information provided through leaflets during the postoperative period led to increased use of morphine and lower pain scores in patients using patient-controlled analgesia. One hundred patients scheduled for surgery were randomly assigned to the experimental (n = 53) or control group (n = 38). Patients included in the former group received detailed information on morphine; those in the latter group received only general information on postoperative acute pain. The results indicated that during the immediate postoperative period, morphine use was directly associated with pain intensity and satisfaction with pain management and inversely related with side effects. These results show that pain intensity is the most relevant issue in the decision to use morphine. Information leaflets did not change morphine consumption.

Central nervous system neoplasms with combined features of malignant glioma and primitive neuroectodermal tumor (MG-PNET) are rare, poorly characterized, and pose diagnostic as well as treatment dilemmas. We studied 53 MG-PNETs in patients from 12 to 80 years of age (median = 54 years). The PNET-like component consisted of sharply demarcated hypercellular nodules with evidence of neuronal differentiation. Anaplasia, as seen in medulloblastomas, was noted in 70%. Within the primitive element, N-myc or c-myc gene amplifications were seen in 43%. In contrast, glioma-associated alterations involved both components, 10q loss (50%) being most common. Therapy included radiation (78%), temozolomide (63%) and platinum-based chemotherapy (31%). Cerebrospinal fluid (CSF) dissemination developed in eight patients, with response to PNET-like therapy occurring in at least three. At last follow-up, 27 patients died, their median survival being 9.1 months. We conclude that the primitive component of the MG-PNET: (i) arises within a pre-existing MG, most often a secondary glioblastoma; (ii) may represent a metaplastic process or expansion of a tumor stem/progenitor cell clone; (iii) often shows histologic anaplasia and N-myc (or c-myc) amplification; (iv) has the capacity to seed the CSF; and (v) may respond to platinum-based chemotherapy regimens.