Palliative care training in medical undergraduate education: a survey among the faculty.

BACKGROUND: A minority of European countries have compulsory training in palliative care within all medical schools. The aim of the study was to examine palliative care education in Estonia. METHODS: We used the adapted version of the Palliative Education Assessment Tool (PEAT) to evaluate palliative care education at the University of Tartu, the only medical school in Estonia. The PEAT comprises of different palliative care domains and allows for assessing the curricula for palliative care education. RESULTS: 26 hours (h) of palliative care is taught within the basic medical curriculum, which is divided between 14 courses. Ethical issues (4 h, lecture and seminar) and basics of palliative care (2.5 h, lecture) are well covered however, pain and symptom management (12.5 h, lecture, seminar, workshop), psychosocial, spiritual aspects (5.5 h, seminar), and communication (1.5 h, lecture) teaching do not reach the recommended number of hours. Teamwork and self-reflection are not taught at all. CONCLUSIONS: Increased time, more diverse teaching strategies and clear learning outcomes are required to enable the development of palliative care education in Estonia. The teaching and learning of palliative care is a process that requires constant development and collaboration.

Investigating the Relationship between Fear of Failure and the Delivery of End-of-Life Care: A Questionnaire Study.

OBJECTIVE: To investigate whether fear of failure (FOF) influences a clinician's perception of how confident and comfortable they are in their delivery of end-of-life (EOL) care. METHODS: Cross-sectional questionnaire study with recruitment of physicians and nurses across two large NHS hospital trusts in the UK and national UK professional networks. A total of 104 physicians and 101 specialist nurses across 20 hospital specialities provided data that were analysed using a two-step hierarchical regression. RESULTS: The study validated the PFAI measure for use in medical contexts. Number of EOL conversations, gender, and role were shown to impact confidence and comfortableness with EOL care. Four FOF subscales did show a significant relationship with perceived delivery of EOL care. CONCLUSION: Aspects of FOF can be shown to negatively impact the clinician experience of delivering EOL care. CLINICAL IMPLICATIONS: Further study should explore how FOF develops, populations that are more susceptible, sustaining factors, and its impact on clinical care. Techniques developed to manage FOF in other populations can now be investigated in a medical population.

Physician emotional experience of communication and decision making with end-of-life patients: qualitative studies systematic review.

OBJECTIVE: To explore the emotional experience of physicians in acute settings when encountering end-of-life conversations and decision making. METHOD: Thematic synthesis of qualitative studies. Medline, PsychInfo, PubMed, BNI and CIAHL were searched from 1985 to 2021 for studies published in English. Data extraction was informed by a framework created for assessing methodological quality by Polanin, Pigott, Espelage and Grotpeter (2019) and adapted by Draper et al. (2019). RESULTS: Of 8429 papers identified, 17 were selected for review. Two themes containing 10 subthemes described the emotional and psychological factors impacting the experience of end-of-life care, namely: a tension between desire and ability to communicate end-of-life news, and a conflict of hiding versus revealing self across several practical and emotional contexts. CONCLUSION: Medical training is only a small factor in how well a person copes with end-of-life care and may sometimes feed negative appraisals . Lack of support from senior colleagues, fear of criticism and a sense of perceived failure were linked to lower self-efficacy in end-of-life care. Beyond learning practical skills, physicians benefit from understanding the psychological factors impacting their experience and in building self-efficacy, and observing senior colleagues effectively process strong and difficult emotions. PRACTICAL IMPLICATIONS: Promoting personal reflection and sharing of the experiences encountered in end-of-life care, especially modelled from senior colleagues, may contribute to improvements in competence and reduce the impact of heroism, feelings of failure and avoidance in practice.

ILIVE Project Volunteer study. Developing international consensus for a European Core Curriculum for hospital end-of-life-care volunteer services, to train volunteers to support patients in the last weeks of life: A Delphi study.

BACKGROUND: Volunteers make a huge contribution to the health and wellbeing of the population and can improve satisfaction with care especially in the hospice setting. However, palliative and end-of-life-care volunteer services in the hospital setting are relatively uncommon. The iLIVE Volunteer Study, one of eight work-packages within the iLIVE Project, was tasked with developing a European Core Curriculum for End-of-Life-Care Volunteers in hospital. AIM: Establish an international consensus on the content of a European Core Curriculum for hospital end-of-life-care volunteer services which support patients in the last weeks of life. DESIGN: Delphi Process comprising the following three stages:1. Scoping review of literature into palliative care volunteers.2. Two rounds of Delphi Questionnaire.3. Nominal Group Meeting. SETTING/PARTICIPANTS: Sixty-six participants completed the Round 1 Delphi questionnaire; 75% (50/66) took part in Round 2. Seventeen participants attended the Nominal Group Meeting representing an international and multi-professional group including, clinicians, researchers and volunteer coordinators from the participating countries. RESULTS: The scoping review identified 88 items for the Delphi questionnaire. Items encompassed organisational issues for implementation and topics for volunteer training. Three items were combined and one item added in Round 2. Following the Nominal Group Meeting 53/87 items reached consensus. CONCLUSION: Key items for volunteer training were agreed alongside items for implementation to embed the end-of-life-care volunteer service within the hospital. Recommendations for further research included in-depth assessment of the implementation and experiences of end-of-life-care volunteer services. The developed European Core Curriculum can be adapted to fit local cultural and organisational contexts.

Are public health measures and individualised care compatible in the face of a pandemic? A national observational study of bereaved relatives' experiences during the COVID-19 pandemic.

BACKGROUND: COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families. AIM: To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support. DESIGN: A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses. PARTICIPANTS: Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic. RESULTS: Respondents (n = 278, mean 53.4 years) tended to be female (n = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' (n = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, p = 0.03) and those able to visit (OR 2.2, p = 0.04) were independently associated with good perceptions of family support. CONCLUSION: Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.

Health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic: A qualitative study.

BACKGROUND: Health and social care professionals' ability to address the needs of patients and their relatives at end of life is likely to have been impacted by the COVID-19 pandemic. AIM: To explore health and social care professionals' experiences of providing end of life care during the COVID-19 pandemic to help inform current/future clinical practice and policy. DESIGN: A qualitative interview study. Data were analysed using thematic analysis. SETTING/PARTICIPANTS: Sixteen health and social care professionals working across a range of clinical settings in supporting dying patients during the first wave (March-June 2020) of the COVID-19 pandemic in the United Kingdom. RESULTS: Participants reported emotional and practical challenges to providing end of life care during the pandemic, including increases in patient numbers, reduced staffing levels and relying on virtual platforms for sensitive, emotive conversations with relatives. Participants were central to promoting connections between patients and their families at end of life and creating opportunities for a final contact before the death. However, the provision of support varied as a consequence of the pressures of the pandemic. Results are discussed under two themes: (1) challenges and facilitators to providing end of life care, and (2) support needs of relatives when a family member was dying during the COVID-19 pandemic. CONCLUSION: There is a need for flexible visiting arrangements at end of life during a pandemic. A systems-level approach is necessary to promote the wellbeing of health and social care professionals providing end of life care during and after a pandemic.

A qualitative study of bereaved relatives' end of life experiences during the COVID-19 pandemic.

BACKGROUND: Meeting the needs of relatives when a family member is dying can help facilitate better psychological adjustment in their grief. However, end of life experiences for families are likely to have been deleteriously impacted by the COVID-19 crisis. Understanding how families' needs can be met during a global pandemic will have current/future relevance for clinical practice and policy. AIM: To explore relatives' experiences and needs when a family member was dying during the COVID-19 pandemic. DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analysed thematically. SETTING/PARTICIPANTS: A total of 19 relatives whose family member died during the COVID-19 pandemic in the United Kingdom. RESULTS: In the absence of direct physical contact, it was important for families to have a clear understanding of their family member's condition and declining health, stay connected with them in the final weeks/days of life and have the opportunity for a final contact before they died. Health and social care professionals were instrumental to providing these aspects of care, but faced practical challenges in achieving these. Results are presented within three themes: (1) entering into the final weeks and days of life during a pandemic, (2) navigating the final weeks of life during a pandemic and (3) the importance of 'saying goodbye' in a pandemic. CONCLUSIONS: Health and social care professionals can have an important role in mitigating the absence of relatives' visits at end of life during a pandemic. Strategies include prioritising virtual connectedness and creating alternative opportunities for relatives to 'say goodbye'.

Virtual reality in specialist palliative care: a feasibility study to enable clinical practice adoption.

BACKGROUND: The use of virtual reality (VR) is increasing in palliative care. However, despite increasing interest in VR, there is little evidence of how this technology can be implemented into practice. AIMS: This paper aims to: (1) explore the feasibility of implementing VR therapy, for patients and caregivers, in a hospital specialist inpatient palliative care unit and a hospice, and (2) to identify questions for organisations, to support VR adoption in palliative care. METHODS: The Samsung Gear VR system was used in a hospital specialist palliative inpatient unit and a hospice. Patients and caregivers received VR distraction therapy and provided feedback of their experience. Staff completed a feedback questionnaire to explore their opinion of the usefulness of VR in palliative care. A public engagement event was conducted, to identify questions to support implementation of VR in palliative care settings. RESULTS: Fifteen individuals (12 (80%) patients and 3 (20%) caregivers) participated. All had a positive experience. No adverse effects were reported. Ten items were identified for organisations to consider ahead of adoption of VR in palliative care. These were questions about: the purpose of VR; intended population; supporting evidence; session duration; equipment choice; infection control issues; content choice; setting of VR; person(s) responsible for delivery and the maintenance plan. CONCLUSIONS: It is feasible to use VR therapy in palliative care; however, further evidence about its efficacy and effectiveness is needed. Palliative care practitioners considering VR use should carefully consider several factors, to ensure that this technology can be used safely and effectively in clinical practice.

From European Association for Palliative Care Recommendations to a Blended, Standardized, Free-to-Access Undergraduate Curriculum in Palliative Medicine: The EDUPALL Project.

The World Health Organization recommends that "palliative care should be integrated as a routine element of all Undergraduate Medical Education." However, the provision of training for medical undergraduates is variable; only 18% of 51 European countries have mandatory training in palliative medicine. EDUPALL is an ERASMUS+ funded international collaborative project to develop and pilot an undergraduate program for training in palliative medicine. The objective of this study was to critically review and revise current European Association for Palliative Care (EAPC) Recommendations for the Development of Undergraduate Curricula in Palliative Medicine and translating these into an updated curriculum document. Clinicians, academics, and researchers from Romania, Ireland, Germany, Austria, Spain, and the United Kingdom reviewed the EAPC recommendations using a variant of consensus methodology, Nominal Group Technique. From the updated document, four working-groups translated each recommendation into a specific learning objective, and developed associated learning outcomes, stratified by domain: attitude, cognition, and skills. The outcomes and objectives were organized into discrete teaching units and transferred into a curriculum template, identifying notional hours, teaching, and assessment strategies. To ensure quality control, the draft template was circulated to experts from 17 European countries, together with a brief survey instrument, for peer review purposes. All 17 reviewers returned overwhelmingly positive comments. There was large agreement that: the teaching units were logically organized; learning outcomes covered core training needs; learning objectives provided guidance for teaching sessions; learning modalities were appropriately aligned; and assessment strategies were fit for purpose. An updated and standardized curriculum was developed, which provides a platform for the sequential development of the next phases of the EDUPALL project.

A systematically structured review of biomarkers of dying in cancer patients in the last months of life; An exploration of the biology of dying.

BACKGROUND: The Neuberger review made a number of recommendations to improve end of life care, including research into the biology of dying. An important aspect of the biology of dying is the identification of biomarkers as indices of disease processes. Biomarkers have the potential to inform the current, limited understanding of the dying process and assist clinicians in recognising dying, in particular how to distinguish dying from reversible acute deterioration. OBJECTIVES: To critically appraise the literature on biological factors that may be used as prognostic indicators in advanced cancer patients and to identify candidate biomarkers of the dying process that can be measured serially in cancer patients' bodily fluids. METHODS: A systematically structured review was conducted using three electronic databases. A hand search of six peer-reviewed journals and conference abstracts was also conducted. Studies reporting prognostic biomarkers in cancer patients with a median survival of ≤90 days and post-mortem studies were included. Final levels of evidence and recommendations were made using the Evidence Based Medicine modified GRADE system. RESULTS: 30 articles were included. Seven prognostic biological factors demonstrated Grade A evidence (lymphocyte count, white blood cell count, serum C-reactive protein, albumin, sodium, urea and alkaline phosphatase). An additional eleven prognostic factors were identified with Grade B evidence (platelet count, international normalised ratio, serum vitamin B12, prealbumin, bilirubin, cholesterol, aspartate aminotransferase, alanine transaminase, lactate dehydrogenase, pseudocholinesterase and urate). A number of biomarkers were specifically identified in the last two weeks of life but limitations exist. No post-mortem studies met the inclusion criteria. CONCLUSION: The biology of dying is an important area for future research, with the evidence focused on signs, symptoms and prognostic factors. This review identifies a number of common themes shared amongst advanced cancer patients and highlights candidate biomarkers which may be indicative of a common biological process to dying.

Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.

BACKGROUND: As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. AIM: To assess the validity and reliability of CODE by conducting: cognitive 'think aloud' interviews; test-retest analysis; and assessing internal consistency and construct validity of three key composite scales. DESIGN: Postbereavement survey to next-of-kin (NOK). SETTING/PARTICIPANTS: 291 NOK to patients who died at home in Northwest England from an advanced incurable illness were invited to complete the CODE questionnaire. Additionally, potential participants were asked to undertake a cognitive interview and/or complete CODE for a second time a month later. RESULTS: 72 bereaved relatives (24.7% response rate) returned the completed CODE questionnaire, and 25 completed CODE for a second time. 15 cognitive interviews were undertaken. All interviewees found CODE sensitively worded and easy to understand. Minor revisions were suggested to provide additional clarity. Test-retest analysis showed all except one question had moderate or good stability. Although the ENVIRONMENT scale was not as relevant within the home setting, all three key composite scales showed good internal consistency and construct validity. CONCLUSIONS: 'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.

Hydration in advanced cancer: can bioelectrical impedance analysis improve the evidence base? A systematic review of the literature.

CONTEXT: Decisions surrounding the administration of clinically assisted hydration to patients dying of cancer can be challenging because of the limited understanding of hydration in advanced cancer and a lack of evidence to guide health care professionals. Bioelectrical impedance analysis (BIA) has been used to assess hydration in various patient groupings, but evidence for its use in advanced cancer is limited. OBJECTIVES: To critically appraise existing methods of hydration status assessment in advanced cancer and review the potential for BIA to assess hydration in advanced cancer. METHODS: Searches were carried out in four electronic databases. A hand search of selected peer-reviewed journals and conference abstracts also was conducted. Studies reporting (de)hydration assessment (physical examination, biochemical measures, symptom assessment, and BIA) in patients with advanced cancer were included. RESULTS: The results highlight how clinical examination and biochemical tests are standard methods of assessing hydration, but limitations exist with these methods in advanced cancer. Furthermore, there is disagreement over the evidence for some commonly associated symptoms with dehydration in cancer. Although there are limitations with using BIA alone to assess hydration in advanced cancer, analysis of BIA raw measurements through the method of bioelectrical impedance vector analysis may have a role in this population. CONCLUSION: The benefits and burdens of providing clinically assisted hydration to patients dying of cancer are unclear. Bioelectrical impedance vector analysis shows promise as a hydration assessment tool but requires further study in advanced cancer. Innovative methodologies for research are required to add to the evidence base and ultimately improve the care for the dying.

Undergraduate training in palliative medicine: is more necessarily better?

The General Medical Council's call to modernize medical education prompted the University of Liverpool Medical School to develop a new undergraduate programme, integrating palliative medicine as 'core' curricula. Following successful piloting, the palliative medicine training programme was further developed and expanded. This paper examines whether the additional investment produces improved outcomes. In 1999, fourth year undergraduate medical students (Cohort 1, n = 217) undertook a 2-week pilot education programme in palliative medicine. Subsequently, the training programme was refined and extended, incorporating advanced communication skills training, an ethics project and individual case presentations (Cohort 2, n = 443). Congruent with the study's theoretical driver of self-efficacy, both cohorts were surveyed pre- and post-programme with validated measures of: (i) self-efficacy in palliative care scale; (ii) thanatophobia scale. No significant differences between cohorts' pre-programme scores were identified. Within each cohort, statistically and educationally significant post-education improvements were recorded in both scales. Further post-education analysis indicated that the extended programme produces significantly greater improvements in all domains of the self-efficacy in palliative care scale (communication, t =-7.28, patient management, t =-5.96, multidisciplinary team-working t =-3.77 at p < 0.000), but not thanatophobia. Although improvements were recorded in both cohorts, participation in the extended education programme resulted in further statistically significant gains. Interpreted through the theoretical model employed, improved self-efficacy and outcome expectancies will result in behavioural change that leads to improved practice and better patient care.