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Despite documented racial and ethnic disparities in care, there is significant variability in representation, reporting, and analysis of race and ethnic groups in the hospice and palliative medicine (HPM) literature.To evaluate the race and ethnic diversity of study participants and the reporting of race and ethnicity data in HPM research.Adult patient and/or caregiver-centered research conducted in the U.S. and published as JPSM Original Articles from January 1, 2015, through December 31, 2019, were identified. Descriptive analyses were used to summarize the frequency of variables related to reporting of race and ethnicity.Of 1253 studies screened, 218 were eligible and reviewed. There were 78 unique race and ethnic group labels. Over 85% of studies included ≥ one non-standard label based on Office of Management and Budget designations. One-quarter of studies lacked an explanation of how race and ethnicity data were collected, and 83% lacked a rationale. Over half did not include race and/or ethnicity in the analysis, and only 14 studies focused on race and/or ethnic health or health disparities. White, Black, Hispanic, Asian, American Indian or Alaska Native, and Native Hawaiian or Other Pacific Islander persons were included in 95%, 71%, 43% 37%,10%, and 4% of studies. In 92% of studies the proportion of White individuals exceeded 57.8%, which is their proportion in the U.S.Our findings suggest there are important opportunities to standardize reporting of race and ethnicity, strive for diversity, equity, and inclusion among research participants, and prioritize the study of racial and ethnic disparities in HPM research.

Supportive, or palliative, care has moved into medicine's mainstream with well-known and studied benefits but continues to be inadequately utilized in many health care environments particularly intensive care units (ICUs). With diverse patient populations in the various ICU settings, the supportive care team must adapt and mold their goals-of-care discussions and relationship building based on the ICU culture and individuals involved. Despite the differences in disease processes, early supportive care involvement in the ICU provides much needed emotional support and symptom management to patients and families in addition to identifying the patient's goals of care early in the hospital stay. The purpose of this article is to provide a general overview of the history of supportive care and clarify current misperceptions, particularly related to hospice, surrounding the specialty. The types of supportive care consults will be explained and their uses in the various ICU settings, and illustrate the advantage of early involvement to not only patients and families but the medical team as well.

Surgeons comprise only 2% of Hospice and Palliative Medicine (HPM) board-certified physicians. Little is known about the motivations of individuals who pursue this combined training or the perceived benefits of this pathway. This study aimed to capture the pathways and experiences of HPM fellowship trained surgeons and to establish recommendations for surgical trainees who may benefit from HPM fellowship training.A qualitative study was designed using semi-structured zoom interviews that elicited experiences of HPM trained surgeons. Data was analyzed using descriptive statistics and thematic analysis.Researchers were from the University of Kansas School of Medicine and the University of Alabama at Birmingham. Participants were trained and worked across the United States in a variety of settings.Eligibility included completion of a 1-year HPM fellowship and training in general surgery, general obstetrics and gynecology, or affiliated subspecialties.Seventeen interviews were conducted. All participants expressed satisfaction with their HPM fellowship training. Four themes emerged as recommendations for surgeons to pursue HPM fellowship training: 1) a commitment to joining the HPM workforce, 2) becoming ambassadors for HPM and surgical culture change, 3) desire for advanced communication and symptom management skills at the specialist level, and 4) specialist level HPM skills may enhance surgical career.HPM fellowship training is achievable through multiple pathways for surgeons from a variety of training backgrounds.

Introduction General practitioners (GP) are key in the delivery of primary palliative care in the community, so appropriate knowledge and skills are needed. Previous research has suggested there may be gaps in training opportunities. Aims To develop and evaluate a Master Class series presented by a hospice palliative care service to their local GPs and other health-care professionals. A secondary aim was to measure the lasting impacts of the educational intervention. Methods The study setting was the Canterbury region of Aotearoa New Zealand (NZ). GPs and other health-care professionals were surveyed using a research team-designed questionnaire rating self confidence in the nominated learning objectives before and after the Master Classes. The participants were also asked to self-rate the application of the knowledge to their practice 3 years after the Master Class sessions were attended. Results There were 56 sets of questionnaires completed. The participants tended to be experienced female GPs with a range of palliative care patients in their practice. There was significant improvement in most learning outcomes across the Master Classes series. The attendees reported the Master Classes were relevant and clear, with useful resources. The improvements in the learning outcomes were largely sustained over 3 years. Discussion The provision of palliative care education that aligns with clinical practice improves knowledge, skills and confidence in GPs who provide most of the end-of-life care in New Zealand.

The ongoing COVID-19 pandemic has led many leaders to reassess how recruitment into the medical field is conducted. In Hospice and Palliative Medicine, many training programs are moving to virtual recruitment as a more permanent strategy. However, virtual recruitment disproportionately affects smaller training programs as well as those in smaller cities or those whose location is less well-known.To assess faculty perspective regarding the value of virtual vs. face-to-face recruitment methods in a well-established program located in a mid-sized city that is lesser known than many comparable programs.After virtual recruitment season in 2020, we assessed our faculty regarding the process of virtual interviews. Survey items were based on results of the 2020 NRMP Internal Medicine Program Director Survey to include the most highly cited factors used to rank internal medicine applicants. Faculty was asked whether virtual or face-to-face interviews were more effective and were asked to make an overall choice between face to face and virtual recruitment formats and to explain the reason behind their decision.Twenty-three faculty received the survey and 17 completed. Although more faculty felt that in-person interviews allowed for better ability to recruit the most qualified trainees than virtual interviews, nine out of the 17 faculty chose virtual as their preferred format.While acknowledging benefits that can only be achieved in-person, our faculty believe that virtual interviews for future Hospice and Palliative Medicine fellows is an effective and potentially advantageous way to recruit the future work force of Hospice and Palliative Medicine.

Introduction Evidenced based medicine (EBM) is necessary to standardize or treatment for infection since EBM is established based on the results of clinical trials. Entry criteria for clinical trials are very strict, and many patients have difficulties in being enrolled in any clinical trials regarding candidemia. It is questionable if the results of clinical trials reflect the real world of general medicine in this case. Patients and methods For the purpose of examining how many patients could join any randomized clinical trials for the treatment of candidemia, we reviewed all the candidemia patients in our institute during 2014–2018. The patients were divided into two groups: patients who were eligible for clinical trials (participation possible group), and those who were not (participation impossible group). Exclusion criteria for clinical trials were set based on previous clinical trials. Results A total of 70 patients was enrolled in this study. The median age was 73 years (range 36–93 years). Of these, 41 patients (59%) were male. As for site of infections, catheter related blood stream infection was most frequently seen in 37 (53%). Seventeen patients (24%) were classified as participation possible group and 53 patients (76%) were participation impossible group. Comparing the two groups, participation possible group patients have much better performance status, have less comorbidities and have longer overall survival times than participation impossible group patients. Conclusion Only 24% of candidemia patients were eligible for the clinical trials. Thus, we can see that clinical trials might not correctly reflect the real world among candidemia patients.

Purpose of review The purpose of this paper is (1) to provide insight in the palliative care needs of patients with COVID-19; (2) to highlight the challenges of COVID-19 for palliative care; and (3) to highlight developments in COVID-19 palliative care. Recent findings Patients with serious COVID-19 have palliative care needs in all domains: physical, psychological, social and spiritual. COVID-19 palliative care is confronted with many challenges, including: the uncertain prognosis, resource limitations, challenges regarding advance care planning, lack of guidance, limited multidisciplinary collaboration, need for remote communication, restrictions in family visits, and burden for clinicians. Palliative care responded with many developments: development of services; integration of palliative care with other services; tools to support advance care planning, (remote) communication with patients and families, or spiritual care; and care for team members. Summary Palliative care has an important role in this pandemic. Palliative care rapidly developed services and opportunities were found to support patients, families and clinicians. Further developments are warranted to face future demands of a pandemic, including integrated palliative care and education in palliative care skills across all specialties. Intervention studies are needed to enable evidence-based recommendations for palliative care in COVID-19.

Context Hospice and palliative medicine (HPM) physicians frequently care for patients with substance use disorders (SUDs), but there is no consensus on which primary addiction medicine (AM) skills are essential. Objectives Identify key primary AM skills that physicians should acquire during an ACGME-accredited HPM fellowship program. Methods A modified Delphi study consisting of 18 experts on SUD in HPM and medical education. A literature review and expert input identified initial AM skills. In three Delphi rounds, participants rated each skill on a nine-point scale from “not at all important to include” to “crucial to include.” We calculated medians (IQRs), analyzed panelists’ comments, and grouped skills using the RAND / UCLA appropriateness method. Results Among 62 proposed AM skills, 53 skills were rated as appropriate to include (38 of which achieved agreement), and nine skills were rated as uncertain. AM skills most relevant to HPM included 1) defining chemical coping, median 8.5 (IQR 2); 2) balancing life expectancy with risks of opioid use for patients with SUD, 9 (IQR 0); 3) explaining best practices to dispose unused opioids postmortem, 8 (IQR 2); 4) managing pain for hospice patients with SUD, 9 (IQR 0.75); and 5) partnering with hospice to manage patients on methadone and buprenorphine, 9 (IQR 2). Experts did not achieve consensus on whether HPM physicians should be encouraged to learn to prescribe buprenorphine for patients with opioid use disorder, 6 (IQR 3). Conclusion HPM fellowships should consider incorporating the primary AM skills identified in this study in their curricula.

Background The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified 11 potential “next step” actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their “actionable importance.” Methods Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the “actionable importance” of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. Results One hundred seventy-seven individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top five potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). Conclusions Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.

Background: Missing data compromise the internal and external validity of trial findings, however there is limited evidence on how best to reduce missing data in palliative care trials. Aim: To assess the association between participant and site level factors and missing data in palliative care trials. Design and setting: Individual participant-level data analysis of 10 phase 3 palliative care trials using multi-level cross-classified models. Results: Participants with missing data at the previous time-point and poorer performance status were more likely to have missing data for the primary outcome and quality of life outcomes, at the primary follow-up point and end of follow-up. At the end of follow-up, the number of site randomisations and number of study site personnel were significantly associated with missing data. Trial duration and the number of research personnel explained most of the variance at the trial and site-level respectively, except for the primary outcome where the amount of data requested was most important at the trial-level. Variance at the trial level was more substantial than at the site level across models and considerable variance remained unexplained for all models except quality of life at the end of follow-up. Conclusion: Participants with a poorer performance status are at higher risk of missing data in palliative care trials and require additional support to provide complete data. Performance status is a potential auxiliary variable for missing data imputation models. Reducing trial variability should be prioritised and further factors need to be identified and explored to explain the residual variance.

PURPOSE In the Philippines, a lower middle-income country in Southeast Asia, 6 of 10 Filipinos die without seeing a doctor. To ensure universal access to cancer care, providers must be equitably distributed. Therefore, we evaluated the distribution of oncologists across all 17 regions in the Philippines. METHODS We gathered data from the official websites of national medical societies on their members' regional area of practice: Philippine Society of Medical Oncology, Philippine Radiation Oncology Society, Surgical Oncology Society of the Philippines, Society of Gynecologic Oncologists of the Philippines, and Philippine Society of Hospice and Palliative Medicine. We compared this with the regional census to determine the number of board-certified oncologists per 100,000 Filipinos. RESULTS For a population of almost 110 million, the Philippines has a total of 348 medical oncologists, 164 surgical oncologists, 99 radiation oncologists, 142 gynecologic oncologists, and 35 hospice and palliative medicine (HPM) specialists. This translates to 0.32 medical oncologists, 0.15 surgical oncologists, 0.09 radiation oncologists, 0.13 gynecologic oncologists, and 0.03 HPM specialists for every 100,000 Filipinos. The number of oncologists is highest in the National Capital Region in Luzon and lowest in the Bangsamoro Autonomous Region in Muslim Mindanao. All regions have at least one medical and gynecologic oncologist. Two regions (12%) have no surgical oncologists, five regions (29%) have no radiation oncologists, and eight regions (47%) have no HPM specialists. CONCLUSION Efforts are needed to increase the number of oncologists and improve equity in their distribution to ensure universal access to cancer care in the Philippines.

Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participation which advanced kidney disease can impose. To date, palliative care resources have been underutilized in paediatric nephrology. This review will highlight recent literature targeting the engagement and life participation of children with advanced kidney disease through implementation of novel palliative care approaches and propose directions for future research.Children with advanced kidney disease and their families highly value incorporation of their perspectives, particularly on life participation, within care plan development; but what it means to participate in life can be variable, and clinicians need improved tools to ascertain and incorporate these perspectives. Novel palliative care interventions developed for application in comparable disease states offer potential opportunities for paediatric nephrologists to support this goal.Children with advanced kidney disease and their families will benefit from incorporation of their perspectives and values, facilitated by palliative interventions.

Background: Palliative care comprises multiprofessional, integrated, person-centered healthcare services for patients and their families facing problems related to progressive or advanced diseases and limited life expectancy. Although non-oncology patients’ needs are similar to those of tumor patients, they are often underestimated. The purpose of our study was to investigate the actual utilization of palliative care services in Germany, especially in the outpatient setting. Methods: Using the IQVIA Disease Analyzer database, a total of 14,792 outpatients from 805 primary care practices in Germany with documented palliative care and related diagnosis between 2018 and 2021 were analyzed. Proportions of different diagnoses among patients receiving outpatient palliative care were stratified by gender and different age groups. Results: The most common underlying diagnosis for outpatient palliative care was cancer (55%), followed by heart failure (16%) and dementia (8%), with age- and sex-specific differences found in the proportion of diagnoses for utilization. While the relative proportions of cancers decreased with age (87% in the 18- to 50-year-old age group versus 37% in the 80-plus age group), the proportion of palliative care related to heart failure increased in the older population (2% in the 18- to 50-year-old age group versus 25% in the 80-plus age group). Conclusions: This study provides an overview of the situation of outpatient palliative care in Germany and shows age- and gender-specific trends regarding the underlying medical diagnoses. Based on these data, palliative care should be adapted to current demographic developments.

Increasing numbers of patients are being referred to specialised palliative care (SPC) which, in order to be beneficial, is recommended to last more than three months. This cohort study aimed to describe time to end-of-life after initiating SPC treatment and to explore potential regional variations. We used national register data from all Danish hospital SPC teams. We included patients who started SPC treatment from 2015–2018 to explore if time to end-of-life was longer than three months. Descriptive statistics were used to summarise the data and a generalised linear model was used to assess variations among the five Danish regions. A total of 27,724 patients were included, of whom 36.7% (95% CI 36.2–37.1%) had over three months to end-of-life. In the Capital Region of Denmark, 40.1% (95% CI 39.0–41.3%) had over three months to end-of-life versus 32.5% (95% CI 30.9–34.0%) in North Denmark Region. We conclude that most patients live for a shorter period of time than the recommended three months after initiating SPC treatment. This is neither optimal for patient care, nor the healthcare system. A geographical variation between regions was shown indicating different practices, patient groups or resources. These results warrant further investigation to promote optimal SPC treatment.

Contains fulltext : 287795.pdf (Publisher’s version ) (Open Access) OBJECTIVE: The objective of this study is to study (1) the relationship between patient-reported symptom burden and information needs in hospital-based palliative care and (2) differences in patient-reported needs during the disease trajectory. METHODS: Observational study: patient-reported symptom burden and information needs were collected via a conversation guide comprising assessment scales for 12 symptoms (0-10), the question which symptom has priority to be solved and a question prompt list on 75 palliative care-related items (35 topics, 40 questions). Non-parametric tests assessed associations. RESULTS: Conversation guides were used by 266 patients. Median age was 65 years (IQ-range, 57-72), 49% were male and 96% had cancer. Patients reported highest burden for Fatigue (median = 7) and Loss of appetite (median = 6) and prioritised Pain (26%), Fatigue (9%) and Shortness of breath (9%). Patients wanted information about 1-38 (median = 14) items, mostly Fatigue (68%), Possibilities to manage future symptoms (68%) and Possible future symptoms (67%). Patients also wanted information about symptoms for which they reported low burden. Patients in the symptom-directed phase needed more information about hospice care. CONCLUSION: Symptom burden and information needs are related. Patients often also want information about non-prioritised symptoms and other palliative care domains. Tailored information-provision includes inviting patients to also discuss topics they did not consider themselves.

The SARS-CoV‑2 pandemic has been a major challenge for graduate education. Teaching had to be digitalized within a very short time. This also affected the areas of anesthesiology, intensive care, emergency, pain and palliative care at the Department of Anesthesiology and Intensive Care Medicine at the University of Leipzig.The aim of this questionnaire-based survey was to find out which courses can be digitalized from the students' point of view and which forms of teaching are associated with obstacles. In addition, we examined which technical infrastructure supports digitalization best.In the course of digitalization the lecture series in the areas of palliative care and pain medicine had to be revised but also digital alternatives for seminars, simulation courses and bedside teaching had to be created. Video podcasts, digital learning material, educational films and video conferences were used for the digital implementation of the courses. Depending on the course, different digital methods were combined. In addition, a discussion forum for the exchange between faculty and students was established. An online evaluation was then carried out to assess the content.A total of 82 4th and 5th year medical students took part in the survey. More than 60% of students rated the learning effect of digital courses as "high" or "very high". Video podcasts of the lectures (45.1%) and digital bedside teaching (34.1%) were rated as the most effective ways of imparting knowledge. In particular, 92.7% of the surveyed students believed that the lectures could be replaced digitally on a permanent basis. For bedside teaching (3.7%) and emergency simulation course (1.2%) this is far less the case. In the majority of cases (56.1%), students needed 30-90 min daily for the preparation and post-processing of the contents. Just under 90% gave the digital courses offered by the hospital an overall grade of 1 or 2 (on a scale from 1 = best to 6 = worst).The SARS-CoV‑2 pandemic posed major challenges for graduate teaching. At the same time, however, it also helped to overcome often long-standing hurdles to the digitalization of teaching. In the course of the digital semester, different teaching formats could be digitalized to varying degrees: Lectures can be digitally reproduced particularly well from the students' perspective, whereas the digitalization of bedside teaching has not been possible in most cases.HINTERGRUND: Die SARS-CoV-2-Pandemie hat die Universitäten vor große Herausforderungen gestellt. Innerhalb kürzester Zeit galt es, Lehrveranstaltungen zu digitalisieren. Dies betraf auch den Bereich Anästhesiologie, Intensiv‑, Notfall‑, Schmerz- und Palliativmedizin an der Universität Leipzig.Ziel der fragebogengestützten Untersuchung war es herauszufinden, welche Veranstaltungen aus Sicht der Studierenden am ehesten digitalisiert werden können, und welche technische Infrastruktur die Lehrenden bei der Digitalisierung jeweils bestmöglich unterstützt.Für die digitale Durchführung der Lehrveranstaltungen wurden Videopodcasts, digitale Lernmaterialien, Lehrfilme und Videokonferenzen genutzt. Je nach Veranstaltung wurden verschiedene dieser Angebote kombiniert. Darüber hinaus wurde ein Diskussionsforum für den Austausch zwischen Lehrenden und Studierenden etabliert. Zur Bewertung der Inhalte erfolgte im Anschluss eine Onlineevaluation.An der Befragung haben 82 Studierende teilgenommen. Als effektivste Angebote zur Wissensvermittlung wurden die Videopodcasts der Vorlesung (45,1 %) sowie der elektronische Unterricht am Krankenbett (34,1 %) bewertet. Insbesondere die Vorlesungen könnten nach Meinung von 92,7 % der befragten Studierenden auch dauerhaft digital ersetzt werden. Knapp 90 % haben die digitalen Lehrangebote der Klinik mit einer Gesamtnote von 1 oder 2 bewertet.Im Zuge des digitalen Semesters ließen sich einzelne Lehrformate unterschiedlich gut digitalisieren: Vorlesungen können aus Sicht der Studierenden auch langfristig besonders gut digital abgebildet werden, währenddessen die Digitalisierung des Unterrichts am Krankenbett bisher nicht adäquat möglich ist.

Purpose The purpose of this study was to investigate whether routine insertion of peripherally inserted central catheter (PICC) at admission to a hospice-palliative care (HPC) unit is acceptable in terms of safety and efficacy and whether it results in superior patient satisfaction compared to usual intravenous (IV) access.Materials and Methods Terminally ill cancer patients were randomly assigned to two arms: routine PICC access and usual IV access arm. The primary endpoint was IV maintenance success rate, defined as the rate of functional IV maintenance until the intended time (discharge, transfer, or death).Results A total of 66 terminally ill cancer patients were enrolled and randomized to study arms. Among them, 57 patients (routine PICC, 29; usual IV, 28) were analyzed. In the routine PICC arm, mean time to PICC was 0.84 days (range, 0 to 3 days), 27 patients maintained PICC with function until the intended time. In the usual IV arm, 11 patients maintained peripheral IV access until the intended time, and 15 patients underwent PICC insertion. The IV maintenance success rate in the routine PICC arm (27/29, 93.1%) was similar to that in the usual IV arm (26/28, 92.8%, p=0.958). Patient satisfaction at day 5 was better in the routine PICC arm (97%, ‘a little comfort’ or ‘much comfort’) compared with the usual IV arm (21%) (p

The importance of integrated palliative care in surgical oncology has been established by high-level evidence demonstrating improved patient-centered outcomes. There has been substantial improvement in efforts to incorporate palliative medicine training into medical and surgical education over the last decade. However, although trainees may feel confident in managing patients at the end of life, they may not have the insight or proficiency to provide optimal palliative care. Surgeons and palliative care physicians should collaborate on methods to optimize palliative care education for both trainees and practicing surgeons. A growing number of palliative care resources are available to this end.

Patients undergoing allogeneic stem cell transplantation (allo-SCT) are given a real chance of cure, but at the same time are confronted with a considerable risk of mortality and of severe long-term impediments. This narrative, non-systematic literature review aims to describe the supportive and palliative care needs of allo-SCT recipients, including long-term survivors or those relapsing or dying after transplantation. It also evaluates the feasibility and effectivity of integrating palliative care early in transplant procedures. In this appraisal of available literature, the main findings relate to symptoms like fatigue and psychological distress, which appear to be very common in the whole allo-SCT trajectory and might even persist many years post-transplantation. Chronic GvHD has a major negative impact on quality of life. Overall, there is a paucity of research on further issues in the context of allo-SCT, like the distress related to the frequently unpredictable post-transplant trajectory and prognosis, as well as the end-of-life phase. First randomized controlled results support the effectiveness of early integration of specialized palliative care expertise into transplant algorithms. Barriers to this implementation are discussed.

Cannabinoids are chemicals derived naturally from the cannabis plant or are synthetically manufactured. They interact directly with cannabinoid receptors or share chemical similarity with endocannabinoids (or both). Within palliative medicine, cannabinoid receptors (CB1 and CB2) may modulate some cancer symptoms: appetite, chemotherapy-induced nausea and vomiting, and mood, pain and sleep disorders. Opioid and cannabinoid receptors have overlapping neuroanatomical receptor distribution, particularly at the dorsal horn, dorsal striatum and locus coeruleus. They have a favourable safety profile compared with opioids, and cannabis-based medicines help chronic pain. While cannabidiol (CBD) has anti-inflammatory properties, tetrahydrocannabinol (THC) is the psychoactive substance for issues such as mood and sleep. Nabiximols (Sativex), a CBD:THC combination, is Food and Drug Administration approved for some multiple sclerosis symptoms and epilepsy. There has been a swift societal evolution in attitudes about use of cannabis and cannabinoid medicines for chronic pain. In the USA, 33 states have now legalised prescription-based medical cannabis for several medical conditions; Canada has had legislation since 2001 authorising medical use. The European Union (EU) recently declared all EU citizens must have access to medical cannabis over the next 4 years. The integration into medicine and routine clinical use of cannabis is fraught with information gaps, regulatory issues and scarcity of research. Each patient should have a comprehensive assessment and risk–benefit discussion before any cannabis-based intervention to avoid possible complications such as hallucinations, psychosis and potential cardiac harm.

Background: good patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and avoidance of unscheduled and urgent care. Objectives: to undertake an evaluation of patient and carer access to medicines at end-of-life within the context of models of service delivery. Design: evaluative, mixed method case studies of service delivery models, including cost analysis. The unit of analysis was the service delivery model, with embedded sub-units of analysis. Setting: (i) General Practitioner services (ii) Palliative care clinical nurse specialist prescribers (iii) a 24/7 palliative care telephone support line service. Participants: Healthcare professionals delivering end-of-life care; patients living at home, in the last 12 months of life, and their carers. Methods: within each case: Patients/carers completed a structured log on medicines access experiences over an 8-week period. Logs were used as an aide memoire to sequential, semi-structured interviews with patients/carers at study entry, and at four and eight weeks. Healthcare professionals took part in semi-structured interviews focused on their experiences of facilitating access to medicines, including barriers, and facilitating factors. Data on prescribed medicines were extracted from patient records. Detailed contextual data on each case were also collected from a range of documents. Patient, carer and healthcare professional interview data were analysed using Framework Analysis to identify main themes. We estimated prescription costs and budget impact analysis of the different service models. Data were triangulated within each case. Cross-case comparison and logic models were employed to enable systematic comparisons across service delivery types. Findings: accessing medicines is a process characterised by complexity and systems inter-dependency requiring considerable co-ordination work by patients, carers and healthcare professionals. Case studies highlighted differences in speed and ease of access to medicines across service delivery models. Key issues were diversifying the prescriber workforce, the importance of continuity of relationships and team integration, access to electronic prescribing systems, shared records and improved community pharmacy stock. Per patient prescription cost differentials between services were modest but were substantial when accounting for the eligible population over the medium term. Conclusions: experiences of medicines access would be improved through increasing numbers of nurse and pharmacist prescribers, and improving shared inter-professional access to electronic prescribing systems and patient records, within care delivery systems that prioritise continuity of relationships. Community pharmacy stock of palliative care medicines also needs to become more reliable.

Background: Basic palliative care teaching should be included in training curricula for health care providers (HCPs) at all levels of the health service to ensure that the goal set by the South African (SA) National Policy Framework and Strategy for Palliative Care, to have an adequate number of appropriately trained HCPs in South Africa, is achieved. Furthermore, palliative learning objectives for nurses and doctors should be standardised. Many SA medical schools have integrated elements of Palliative Medicine (PM) teaching into undergraduate medical training programmes for doctors; however, the degree of integration varies widely, and consensus and standardisation of the content, structure and delivery of such PM training programmes are not yet a reality.Aim: This joint position paper aims to describe the current state of undergraduate medical PM teaching in South Africa and define the PM competencies required for an SA generalist doctor.Setting: Palliative Medicine programme leads and teachers from eight medical schools in South Africa.Methods: A survey exploring the structure, organisation and content of the respective medical undergraduate PM programmes was distributed to PM programme leads and teachers.Results: Responses were received from seven medical schools. Through a process of iterative review, competencies were defined and further grouped according to suitability for the pre-clinical and clinical components of the curriculum.Conclusion: Through mapping out these competencies in a spiralled medical curriculum, the authors hope to provide guidance to medical curriculum designers to effectively integrate PM teaching and learning into current curricula in line with the goals of the SA National Policy Framework and Strategy on Palliative Care (NPFSPC).

Objectives: A vital component of the coronavirus response is care of the dying COVID-19 patient. We document the demographics, symptoms experienced, medications required, effectiveness observed, and challenges to high-quality holistic palliative care in 31 patients. This will aid colleagues in primary and secondary care settings anticipate common symptoms and formulate management plans. Methods: A retrospective survey was conducted of patients referred to the hospital palliative care service in a tertiary hospital, south east of England between March 21 and April 26, 2020. Patients included had a confirmed laboratory diagnosis of COVID-19 via reverse transcription polymerase chain reaction nasopharyngeal swab for SARS-Cov-2 or radiological evidence of COVID-19. Results: The thirty-one patients included were predominantly male (77%), elderly (median [interquartile range]: 84 [76-89]), and had multiple (4 [3-5]) comorbidities. Referral was made in the last 2 [1-3] days of life. Common symptoms were breathlessness (84%) and delirium (77%). Fifty-eight percent of patients received at least 1 “as required” dose of an opioid or midazolam in the 24 hours before death. Sixty percent of patients needed a continuous subcutaneous infusion and the median morphine dose was 10 mg S/C per 24 hours and midazolam 10 mg S/C per 24 hours. Nineteen percent of our cohort had a loved one or relative present when dying. Conclusion: We provide additional data to the internationally reported pool examining death arising from infection with SARS-CoV-19. The majority of patients had symptoms controlled with low doses of morphine and midazolam, and death was rapid. The impact of low visitation during dying needs exploring.

Aim To assess the current status of palliative medicine (PM) education in medical students in Poland. Methods Data on PM teaching were obtained from a 16–item questionnaire sent to the heads of PM and palliative care (PC) departments at universities or university authorities. In cases in which there was no PM or PC department, the questionnaire was sent to authorities of a given University. Results Eleven PM and PC departments were included in the analysis; 7 at the medical universities, and four at collegium medicum at universities. Among these there were two chairs of PM (at the Medical University of Poznań and the Collegium Medicum at the University of Zielona Góra) and one chair of PC (in Bydgoszcz). Most of the Departments were part of faculties of medicine, and a minority were part of faculties of health sciences. There were no PM or PC departments at 2 medical universities, three at collegium medicum at universities, and 6 at faculties of medicine; two at public universities and 4 at non–public universities. All programs of PM teaching included the philosophy of PC, and pain management. The majority included management of other symptoms, emergencies, communication, ethical issues and psychological issues in PC. Of 12 programs, 9 included practical (bedside) teaching. The numbers of hours allocated to PM ranged from 15 to 45 (median 20). Conclusions Half of the universities that educate medical students in Poland had PM departments and provided obligatory PM teaching. Establishing departments of PM and PC at all medical universities, collegium medicum at universities, and faculties of medicine at universities with a common PM program as an integral part of undergraduate education is suggested through including PM as a separate subject to the Regulation of the Ministry of Education and Science and initiatives of National and Provincial Consultants in PM.

Background15%–20% of critical care patients die during their hospital admission. This service evaluation assesses quality of palliative care in intensive care units (ICUs) compared with national standards.MethodsRetrospective review of records for all patients who died in four ICUs (irrespective of treatment limitation) between 1 June and 31 July 2019. Descriptive statistics reported for patient characteristics, length of stay, admission route, identification triggers and palliative care delivery.ResultsForty-five patients died, two records were untraced, thus N=43. The dying process was recognised in 88% (n=38). Among those where dying was recognised (N=35), 97% (34) had documented family discussion before death, 9% (3) were offered religious/spiritual support, 11% (4) had review of hydration/nutrition and 6% (2) had documented preferred place of death. Prescription of symptom control medications was complete in 71% (25) opioids, 34% (12) haloperidol, 54% (19) midazolam and 43% (15) hyoscine. Combining five triggers—length of stay >10 days prior to ICU admission 7% (3), multiorgan failure ≥3 systems 33% (14), stage IV malignancy 5% (2), post-cardiac arrest 23% (10) and intracerebral haemorrhage requiring mechanical ventilation 12% (5)—identified 60% (26) of patients. Referral to the palliative care team was seen in 14% (5), and 8% (3) had specialist palliative care team review.ConclusionsRecognition of dying was high but occurred close to death. Family discussions were frequent, but religious/spiritual needs, hydration/nutrition and anticipatory medications were less often considered. The ICUs delivered their own palliative care in conjunction with specialist palliative care input. Combining five triggers could increase identification of palliative care needs, but a larger study is needed.

Background Palliative care can improve outcomes for patients with advanced chronic heart failure and their families, but timely recognition of palliative care needs remains challenging. Aim The aim of this study was to identify characteristics of a tool to assess palliative care needs in chronic heart failure that are needed for successful implementation, according to patients, their family and healthcare professionals in The Netherlands. Methods Explorative qualitative study, part of the project ‘Identification of patients with HeARt failure with PC needs’ (I-HARP), focus groups and individual interviews were held with healthcare professionals, patients with chronic heart failure, and family members. Data were analysed using the Consolidated Framework for Implementation Research. Results A total of 13 patients, 10 family members and 26 healthcare professionals participated. Direct-content analysis revealed desired tool characteristics for successful implementation in four constructs: relative advantage, adaptability, complexity, and design quality and packaging. Healthcare professionals indicated that a tool should increase awareness, understanding and knowledge concerning palliative care needs. A tool needs to: be adaptable to different disease stages, facilitate early identification of palliative care needs and ease open conversations about palliative care. The complexity of chronic heart failure should be considered in a personalized approach. Conclusions The current study revealed the characteristics of a tool for timely identification of palliative care needs in chronic heart failure needed for successful implementation. The next steps will be to define the content of the tool, followed by development of a preliminary version and iterative testing of this version by the different stakeholders.

Context Palliative medicine (PM) has gained subspecialty recognition in many countries during the past two decades. Jordan is one of the first Arab countries to gain accreditation for the specialty. Objectives To outline the process undertaken by leaders in palliative care in Jordan to have PM recognized as a subspecialty and the development of a two-year fellowship training program. To contextualize the Jordanian experience with the experience from other countries and assess the need for PM specialty programs in Jordan. Methods A thorough review of all documentations, letters, correspondence, and proposals exchanged between the palliative care department at King Hussein Cancer Center and the Jordanian Medical Council from 2011 to 2017. An assessment of the number of certified physicians and fellowship posts required to meet the current palliative care needs in Jordan, using population-based need for palliative care. Results The process of gaining subspecialty status for PM in Jordan was complex, lengthy, and dependent on the collaboration of many officials and health sector organizations working together on a national strategy to achieve it. Ultimately, PM was recognized as a subspecialty in 2017, a two-year fellowship program was accredited by the Jordanian Medical Council in 2018, with a recognized subspecialty board examination, which can be accessed by many medical and surgical specialties. It is estimated that 185–235 full-time equivalent palliative care specialist physicians are needed to meet the demand of patients in Jordan. Conclusion Key factors enabling accreditation to happen in Jordan were strong leadership, persistence, collaboration with major stakeholders, and seeking out opportunities to promote the specialty. Our experience and lessons learnt are transferable to other countries and may prove beneficial to others aiming to gain subspecialty recognition for PM.

Purpose This cross-sectional study investigated the status of life-sustaining treatment (LST) practices and identified characteristics and factors influencing decision-making practices.Materials and Methods The National Agency for Management of Life-sustaining Treatment retains records provided by doctors regarding patients subject to LST implementation. A total of 71,327 patients receiving LST were identified. We analyzed all nationally reported data between February 2018 and October 2019. Indicators such as the proportion of deaths, records for decision to terminate LST, implementation of LST records, and registration of Advance Statements on LST were analyzed.Results A total of 67,252 (94.3%) end-of life decisions were implemented in South Korea. The proportion of deaths preceded by a LST plan, non-self-determination LST decision, and any advance statements was 33.5% (23,891/71,327), 66.5% (47,436/71,327), and 1.2% (890/71,327), respectively. The logistic regression model revealed that self-determination to terminate LST was more frequent for men than for women and higher for those aged 30-69. Disability (odds ratio [OR], 0.59; 95% confidence interval [CI], 0.56 to 0.61), living in non-metropolitan areas (OR, 0.84; 95% CI, 0.81 to 0.86), and disease comorbidity was independently associated with a low level of self-determination.Conclusion After the implementation of the new LST Act, about a third of patients in end-of-life process made decisions regarding their medical LST. However, family members still play a major role in LST decisions where the patient’s intention cannot be verified. Decisions related to LST are predominantly made when death is imminent. Thus, it is necessary to increase awareness of end-of-life LST decision-making among medical staff and the public.

Background: When the suffering of a terminally ill patient is intolerable and refractory, sedatives are sometimes used for symptom relief. Objective: To describe the main principles of revised Japanese clinical guidelines about palliative sedation therapy. Design: Consensus methods using the Delphi technique were used. Results: The main principles of the guidelines that were newly defined or developed are as follows: (1) palliative sedation was defined as "administration of sedatives for the purpose of alleviating refractory suffering" (excluding the aim of reducing patient consciousness); (2) palliative sedation was classified according to the method of administration of sedatives: respite sedation versus continuous sedation (including (continuous) proportional sedation and continuous deep sedation); (3) a description of state-of-the-art recommended treatments for difficult symptoms such as delirium, dyspnea, and pain before the symptom was determined as refractory was included; (4) the principle of proportionality was newly defined from an ethical point of view; and (5) families' consent was regarded as being desirable (mandatory in the previous version). Conclusions: We described the main principles of revised Japanese clinical guidelines about palliative sedation therapy. Further consensus building is necessary.

Immune-related adverse events (IrAEs) affecting the gastrointestinal (GI) tract and liver are among the most frequent and most severe inflammatory toxicities from contemporary immunotherapy. Inflammation of the colon and or small intestines (entero)colitis is the single most common GI IrAE and is an important cause of delay of discontinuation of immunotherapy. The severity of these GI IrAEs can range from manageable with symptomatic treatment alone to life-threatening complications, including perforation and liver failure. The frequency and severity of GI IrAEs is dependent on the specific immunotherapy given, with cytotoxic T lymphocyte antigen (CTLA)-4 blockade more likely to induce severe GI IrAEs than blockade of either programmed cell death protein 1 (PD-1) or PD-1 ligand (PD-L1), and combination therapy showing the highest rate of GI IrAEs, particularly in the liver. To date, we have minimal prospective data on the appropriate diagnosis and management of GI IrAEs, and recommendations are based largely on retrospective data and expert opinion. Although clinical diagnoses of GI IrAEs are common, biopsy is the gold standard for diagnosis of both immunotherapy-induced enterocolitis and hepatitis and can play an important role in excluding competing, though less common, diagnoses and ensuring optimal management. GI IrAEs typically respond to high-dose corticosteroids, though a significant fraction of patients requires secondary immune suppression. For colitis, both TNF-α blockade with infliximab and integrin inhibition with vedolizumab have proved highly effective in corticosteroid-refractory cases. Detailed guidelines have been published for the management of low-grade GI IrAEs. In the setting of more severe toxicities, involvement of a GI specialist is generally recommended. The purpose of this review is to survey the available literature and provide management recommendations focused on the GI specialist.

Introduction: A high outpatient clinic no-show rate affects clinical outcomes, increases healthcare costs, and reduces both access to care and provider productivity. In an effort to reduce the no-show rate at a busy palliative medicine outpatient clinic, a quality improvement project was launched consisting of a telephone call made by clinic staff prior to appointments. The study aimed to determine the effect of this intervention on the no-show rate, and assess the financial impact of a decreased no-show rate. Methods and Materials: The outpatient clinic no-show rate was measured from September 1 to December 31, 2015. Data from the first 8 months of the calendar year was removed since these could not be verified. Starting January 1, 2016, patients received a telephone call reminder 24 hours prior to their scheduled outpatient appointment for confirmation. No-show rate was again measured for the calendar year 2016. Opportunity costs were calculated for unfulfilled clinic visits. Results: Of the 1224 completed visits from September 1 to December 31, 2015, 271 were no-shows with an average rate of 11.8%. After the intervention, there were 4368 completed visits and 562 no-shows. The no-show rate for 2016 averaged 6.9% (p < 0.001), down 4.9% from the last 4 months of 2015. Estimated opportunity costs were about 396 no-show visits avoided, equivalent to an annual savings of about $79,200. Conclusion: A telephone call reminder to patients 24 hours prior to their appointment decreased the no-show rate in an outpatient palliative medicine clinic. Avoiding unfulfilled visits resulted in substantial opportunity costs.

Background: There has been a call for palliative care (PC) published research to support the impact and need for more specialty PC services. Objective: The purpose of this study was to characterize research in PC over a 15-year period in 3 PC journals published in the United States. Design: The authors reviewed every issue of the Journal of Pain and Symptom Management, Journal of Palliative Medicine, and American Journal of Hospice and Palliative Medicine from 2004 through 2018. Studies included were original articles and brief reports. Study type (qualitative, quantitative), author (first and last), gender, and professional degree of the author (first and last) were recorded. Results: A total of 4881 articles were included in this study. The proportion of quantitative papers significantly increased across 3 time points from 63% to 67% to 78%. The proportion of women first authors increased across all 3 time points (54%, 2004-2008; 57%, 2009-2013; 60%, 2014-2018), and the proportion of women last authors increased across all time points (38%, 2004-2008; 44%, 2009-2013; 46%, 2014-2018). More than 40% of authors were physicians. Conclusions: Published PC studies are increasingly quantitative in design. Gender authorship is female dominant for the first authors and increasingly equal across genders for the last authors.

As the spread of the novel coronavirus disease 2019 (COVID-19) continues worldwide, health care systems are facing increased demand with concurrent health care provider shortages. This increase in patient demand and potential for provider shortages is particularly apparent for palliative medicine, where there are already shortages in the provision of this care. In response to the developing pandemic, our Geriatrics and Palliative (GAP) Medicine team formulated a 2-team approach which includes triage algorithms for palliative consults as well as acute symptomatic management for both patients diagnosed with or under investigation (PUI) for COVID-19. These algorithms provided a delineated set of guidelines to triage patients in need of palliative services and included provisions for acute symptoms management and the protection of both the patient care team and the families of patients with COVID-19. These guidelines helped with streamlining care in times of crisis, providing care to those in need, supporting frontline staff with primary-level palliative care, and minimizing the GAP team’s risk of infection and burnout during the rapidly changing pandemic response.

Thanks to the efforts of many individuals and organizations, the field of Hospice and Palliative Medicine (HPM) has undergone unprecedented growth over the last two decades. To meet the needs of seriously ill patients and families in inpatient, outpatient community setting in the future, the field of HPM must develop innovative strategies to expand the specialist workforce pipeline. With 148 programs participating in the National Residency Matching Program and 285 matched applicants in 2019, the specialty of HPM can barely replace those who are retiring or leaving the field. We call for a renewed and coordinated effort to increase the applicant pool for HPM fellowship positions, as well as greater access to specialist HPM training through expanded traditional fellowship programs and innovative specialist training pathways. Without such an expansion, our specialty will struggle to serve those patients and families who need us most.

Despite significant advances in treatment, chronic obstructive pulmonary disease (COPD) remains a chronic and progressive disease that frequently leads to premature mortality. COPD is associated with a constellation of significant symptoms, including dyspnea, cough, wheezing, pain, fatigue, anxiety, depression, and insomnia, and is associated with increased morbidity. Palliative care is appropriate to support these patients. However, historically, palliative care has focused on supporting patients with malignant disease, rather than progressive chronic diseases such as COPD. Therapies for COPD often result in functional and symptomatic improvements, including health-related quality of life (HRQL), and palliative care may further improve symptoms and HRQL. Provision of usual palliative care therapies for this patient population requires understanding the pathogenesis of COPD and common disease-targeted pharmacotherapies, as well as an approach to balancing life-prolonging and HRQL care strategies. This review describes COPD and current targeted therapies and their effects on symptoms, exercise tolerance, HRQL, and survival. It is important to note that medications commonly used for symptom management in palliative care can interact with COPD medications resulting in increased risk of adverse effects, enhanced toxicity, or changes in clearance of medications. To address this, we review pharmacologic interactions with and precautions related to use of COPD therapies in conjunction with commonly used palliative care medications.

Continuing the transition to competency-based education, Hospice and Palliative Medicine (HPM) fellowship programs began using context-free reporting milestones (RMs) for internal medicine subspecialties in 2014 but quickly recognized that they did not reflect the nuanced practice of the field. This article describes the development of 20 subspecialty-specific RMs through consensus group process and vetting by HPM educators. A workgroup of content experts used an iterative consensus building process between December 2017 and February 2019 to draft new RMs and create a supplemental guide that outlines the intent of each RM, examples of each developmental trajectory, assessment methods, and resources to guide educators. Program directors, program coordinators, and designated institutional officers were contacted directly to solicit feedback. Most respondents agreed or strongly agreed that each RM represented a realistic progression of knowledge, skills, and behaviors, and that the set of milestones adequately discriminated between meaningful levels of competency. Similarly, respondents felt that the supplemental guide was a useful resource. The result is a set of carefully developed and broadly vetted RMs that represent a progression of development for HPM physicians during one year of clinical fellowship training.

BackgroundRefractory angina can have a significant effect on quality of life. Non-invasive interventions have been suggested but there are few guidelines on management. Our aim was to systematically review all studies that reported non-invasive interventions for refractory angina and report on their effectiveness and safety.MethodsWe performed a literature search of six databases and a grey literature search. Treatments considered first line or second line according to the European Society of Cardiology were excluded, as were interventions that had undergone review within the last 3 years. Design, setting and outcomes were extracted and quality was assessed. A narrative synthesis was undertaken, including an analysis of adverse effects.Results4476 studies were screened, 14 studies were included in our analysis. Interventions were specialist multidisciplinary programmes, transcutaneous electrical nerve stimulation (TENS), perhexiline, medical optimisation, morphine and intranasal alfentanil. The effects of specialist programmes and perhexiline treatment were mixed. Positive effects were reported with TENS, opioids and medical optimisation, with improvements in symptoms, exercise capacity and quality of life. No major adverse effects were noted in any of the treatments.ConclusionThere are non-invasive treatments for refractory angina that are overlooked by current guidelines. While the quality of these studies varies, positive changes have been reported in symptoms, exercise tolerance and quality of life with few adverse effects. There is a need for further research into these treatments which could be useful within the contexts of cardiology and palliative care.

Background Biliary decompression can reduce symptoms and improve quality of life in patients with malignant biliary obstruction. Endoscopically placed stents have become the standard of care for biliary drainage with the aim of improving hepatic function, relieving jaundice, and reducing adverse effects of obstruction. The purpose of this study was to evaluate the performance characteristics of a newly-designed, uncovered metal biliary stent for the palliation of malignant biliary obstruction. Methods This post-market, prospective study included patients with biliary obstruction due to a malignant neoplasm treated with a single-type, commercially available uncovered self-expanding metal stent (SEMS). Stents were placed as clinically indicated for palliation of jaundice and to potentially facilitate neo-adjuvant chemotherapy. The main outcome measure was freedom from recurrent biliary obstruction (within the stent) requiring re-intervention within 1, 3, and 6 months of stent insertion. Secondary outcome measures included device-related adverse events and technical success of stent deployment. Results SEMS were placed in 113 patients (73 men; mean age, 69); a single stent was inserted in 106 patients, and 2 stents were placed in 7 patients. Forty-eight patients survived and/or completed the 6 month study protocol. Freedom from symptomatic recurrent biliary obstruction requiring re-intervention was achieved in 108 of 113 patients (95.6, 95%CI = 90.0–98.6%) at study exit for each patient. Per interval analysis yielded the absence of recurrent biliary obstruction in 99.0% of patients at 1 month (n = 99; 95%CI = 97.0–100%), 96.6% of patients at 3 months (n = 77; 95%CI = 92.7–100%), and 93.3% of patients at 6 months (n = 48; 95%CI = 86.8–99.9%). In total, only 5 patients (4.4%) were considered failures of the primary endpoint. Most of these failures (4/5) were due to stent occlusion from tumor ingrowth or overgrowth. Overall technical success rate of stent deployment was 99.2%. There were 2 cases of stent-related adverse events (1.8%). There were no cases of post-procedure stent migration, stent-related perforation, or stent-related deaths. Conclusions This newly designed and marketed biliary SEMS system appears to be effective at relieving biliary obstruction and preventing re-intervention within 6 months of insertion in the overwhelming majority of patients. The device has an excellent safety profile, and associated high technical success rate during deployment. Trial registration The study was registered on clinicaltrials.gov on 14 October 2013 and the study registration number is NCT01962168. University of Massachusetts Medical School did not participate in the study.

Background Although statements on the competencies required from physicians working within palliative care exist, these requirements have not been described within different levels of palliative care provision by multi-professional workshops, comprising representatives from working life. Therefore, the aim of this study was to describe the competencies required from physicians working within palliative care from the perspectives of multi-professional groups of representatives from working life. Methods A qualitative approach, using a workshop method, was conducted, wherein the participating professionals and representatives of patient organizations discussed the competencies that are required in palliative care, before reaching and documenting a consensus. The data (n = 222) was collected at workshops held in different parts of Finland and it was analyzed using a qualitative content analysis method. Results The description of the competencies required of every physician working within palliative care at the general level included 13 main categories and 50 subcategories in total. ‘Competence in advanced care planning and decision-making’ was the main category which was obtained from the highest number of reduced expressions from the original data (f = 125). Competence in social interactions was another strong main category (f = 107). In specialist level data, six main categories with 22 subcategories in total were found. ‘Competence in complex symptom management’ was the main category which was obtained from the biggest number of reduced expressions (f = 46). A notable association between general level and specialist level data was related to networking, since one of the general level categories was ‘Competence in consultations and networking’ (f = 34) and one of the specialist level categories was ‘Competence to offer consultative and educational support to other professionals’ (f = 30). Moreover, part of the specialist level results were subcategories which belonged to the main categories produced from the general level data. Conclusions The competencies described in this study emphasize decision-making, social interactions and networking. It is important to listen to the voices of the working-life representatives when planning curricula. Moreover, the views of the working-life representatives inform how the competencies gained during their education meet the challenges of the ordinary work.