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Objectives: Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim was to determine current palliative care training at the undergraduate level, in multiple professions, in recognising and communicating dying., Methods: Current UK undergraduate courses in medicine, adult nursing, occupational therapy, social work and physiotherapy were included. All courses received an email asking what training is currently offered in the recognition and communication of dying, and what time was dedicated to this., Results: A total of 73/198 (37%) courses responded to the request for information. 18/20 medical courses provided training in recognising when patients were dying (median 2 hours), and 17/20 provided training in the communication of dying (median 3 hours). 80% (43/54) of nursing and allied health professional courses provided some training in EOLC. Many of the course organisers expressed frustration at the lack of resources, funding and time to include more training. Those courses with more palliative care provision often had a 'champion' to advocate for it., Conclusions: Training in EOLC was inconsistent across courses and professions. Further research is needed to understand how to remove the barriers identified and to improve the consistency of current training., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent., Aim: To determine the consistency with which the Surprise Question is used., Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]-100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213., Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes., Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries ( p  = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries ( p  = 0.53)., Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.

Background: Recognising dying is a key clinical skill for doctors, yet there is little training., Aim: To assess the effectiveness of an online training resource designed to enhance medical students' ability to recognise dying., Design: Online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the intervention group was developed from a group of expert palliative care doctors' weightings of various signs/symptoms to recognise dying. The control group received no training., Setting/participants: Participants were senior UK medical students. They reviewed 92 patient summaries and provided a probability of death within 72 hours (0% certain survival - 100% certain death) pre, post, and 2 weeks after the training. Primary outcome : (1) Mean Absolute Difference (MAD) score between participants' and the experts' scores, immediately post intervention. Secondary outcomes : (2) weight attributed to each factor, (3) learning effect and (4) level of expertise (Cochran-Weiss-Shanteau (CWS))., Results: Out of 168 participants, 135 completed the trial (80%); 66 received the intervention (49%). After using the training resource, the intervention group had better agreement with the experts in their survival estimates ( δ MAD  = -3.43, 95% CI -0.11 to -0.34, p  = <0.001) and weighting of clinical factors. There was no learning effect of the MAD scores at the 2-week time point ( δ MAD  = 1.50, 95% CI -0.87 to 3.86, p  = 0.21). At the 2-week time point, the intervention group was statistically more expert in their decision-making versus controls (intervention CWS = 146.04 (SD 140.21), control CWS = 110.75 (SD 104.05); p  = 0.01)., Conclusion: The online training resource proved effective in altering the decision-making of medical students to agree more with expert decision-making.

This study explored the feasibility of generating reliable information on the frequency, nature and management of breakthrough pain (BTP) in children with life-limiting conditions and life-threatening illnesses (LTIs) from narrative clinical records. In the absence of standardized ways for documenting BTP, we conducted a consensus exercise to develop a glossary of terms that could denote BTP in the records. Thirteen clinicians who contributed to the records reached consensus on 45 terms which could denote BTP, while emphasizing the importance of contextual information. The results of this approach together with guidance for improving the reliability of retrospective reviews informed a data extraction instrument. A pilot test of this instrument showed poor agreement between raters. Given the challenges encountered, we do not recommend a retrospective review of BTP using narrative records. This study highlighted challenges of data extraction for complex symptoms such as BTP from narrative clinical records. For both clinical and research purposes, the recording of complex symptoms such as BTP would benefit from clear criteria for applying definitions, a more structured format and the inclusion of validated assessment tools. This study also showed the value of consensus exercises in improving understanding and interpretation of clinical notes within a service.

Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations., Aim: To explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years., Design: Systematic review., Data Sources: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families., Results: A total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens., Conclusion: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

Communication about palliative treatment options requires a balance between providing patients with sufficient information and not providing unwanted information. Surveys have indicated that many patients with advanced cancer express a wish to receive detailed information. In this prospective multicenter study, the information desire of patients with advanced breast or colorectal cancer was further investigated by offering treatment-related information to patients using a decision aid (DA). In addition, this study explored oncologists' awareness of their patients' information desire. Seventy-seven patients with advanced breast or colorectal cancer facing the decision whether to start second-line palliative chemotherapy were offered a DA by a nurse. This DA contained information on adverse events, tumor response, and survival. The nurse asked the patient whether each information item was desired. Ninety-five percent of patients chose to receive information on adverse events, 91 % chose to receive information on tumor response, and 74 % chose to receive information on survival. Oncologists' judgment of patients' information desire was 100, 97, and 81 %, respectively. For all three information items together, oncologists correctly judged the information desire of 62 % of patients. This study confirms that many patients with advanced cancer wish to receive detailed information on the benefits and risks of palliative treatment options when the information is actually available. Oncologists were adequately aware of this high information desire, but had some difficulty judging the information desire of individual patients. A stepped approach to giving information ("preview, ask, tell, ask") may help to better meet patients' information needs.

Background: According to surveys, many patients with advanced cancer wish to receive survival information., Objective: This study investigated information preferences by offering patients a decision aid (DA) with information on expected survival for two treatment options: supportive care with or without second-line palliative chemotherapy. Predictors of accepting survival information were explored., Design: Eligible patients in this multicentre prospective study were offered second-line chemotherapy for advanced breast or colorectal cancer. A nurse presented a DA on second-line treatment and asked patients whether they desired information on (i) adverse events, (ii) tumour response and (iii) survival. Data on 50 clinical and psychosocial patient characteristics were collected from inclusion forms and patient questionnaires., Results: Seventy-seven patients received a DA; median age 62 years (range 32-80), 61% female, 77% colorectal cancer. Fifty-seven patients (74%; 95% CI 64-84) desired survival information. Four psychosocial characteristics (e.g. deliberative decision style) independently predicted information desire. However, the use of these characteristics to predict information desire hardly outperformed a simple prediction rule., Conclusions: Many patients desired information on expected survival when deciding about second-line treatment. However, our exploratory analysis indicated that patients desiring this information could not be identified based on their clinical or psychosocial characteristics. These findings can help encourage candid discussions about expected survival. Health professionals should be careful not to make implicit assumptions of information desire based on patient characteristics, but to explicitly ask patients if survival information is desired, and act accordingly., (© 2014 John Wiley & Sons Ltd.)

Background: Decision aids (DAs) effectively support patient decision making but are rarely used in daily practice., Objective: To explore nurses' and oncologists' views on routinely offering DAs on palliative chemotherapy to patients by nurses. Most interviewees had clinical experience with the DAs, which were booklets administered to patients by nurses., Methods: The study was guided by 3 theoretical implementation models of innovations in clinical practice, including factors related to the innovation, the professionals (nurses and oncologists), the patient, and the organization. Semistructured interviews were conducted among 12 nurses and 14 oncologists. Interviews were audio taped and fully transcribed., Results: The main barriers to routinely offering DAs to patients were found in nurses' and oncologists' opinions and attitudes (eg, concerns about the impact in this vulnerable population) and in the logistics of organizations (eg, the decision is already made before the nurse sees the patient). Twenty-two of 26 interviewees were open to the future use of the DAs. Disseminating information to professionals (eg, about positive effects of DAs) and embedding DAs in the existing workflow would facilitate implementation., Conclusions: Most nurses and oncologists were open to the future use of the DAs by nurses, provided that certain barriers, particularly related to professionals' opinions and attitudes and logistical procedures in the organization, could be overcome., Implications for Practice: These findings can inform a tailored strategy to implement DAs on palliative chemotherapy. Implementation should start with interventions to motivate professionals, for example, educational meetings.

Background: Widespread implementation of patient engagement by organisations and clinical teams is not a reality yet. The aim of this study is to develop a measure of organisational readiness for patient engagement designed to monitor and facilitate a healthcare organisation's willingness and ability to effectively implement patient engagement in healthcare., Methods: The development of the MORE (Measuring Organisational Readiness for patient Engagement) scale was guided by Weiner's theory of organisational readiness for change. Weiner postulates that an organisation's readiness is determined by both the willingness and ability to implement the change (i.e. in this context: patient engagement). A first version of the scale was developed based on a literature search and evaluation of pre-existing tools. We invited multi-disciplinary stakeholders to participate in a two-round online Delphi survey. Respondents were asked to rate the importance of each proposed item, and to comment on the proposed domains and items. Second round participants received feedback from the first round and were asked to re-rate the importance of the revised, new and unchanged items, and to provide comments., Results: The first version of the scale contained 51 items divided into three domains: (1) Respondents' characteristics; (2) the organisation's willingness to implement patient engagement; and (3) the organisation's ability to implement patient engagement. 131 respondents from 16 countries (health care managers, policy makers, clinicians, patients and patient representatives, researchers, and other stakeholders) completed the first survey, and 72 of them also completed the second survey. During the Delphi process, 34 items were reworded, 8 new items were added, 5 items were removed, and 18 were combined. The scale's instructions were revised. The final version of MORE totalled 38 items; 5 on stakeholders, 13 on an organisation's willingness to implement, and 20 on an organisation's ability to implement patient engagement in healthcare., Conclusions: The Delphi technique was successfully used to refine the scale's instructions, domains and items, using input from a broad range of international stakeholders, hoping that MORE can be applied in a variety of healthcare contexts worldwide. Further assessment is needed to determine the psychometric properties of the scale.

No standard monotherapy or combination palliative chemotherapy currently exists for patients with advanced breast cancer pretreated with anthracyclines and taxanes. In this systematic review we assess the current knowledge on the efficacy and safety of palliative single-agent chemotherapy drugs--capecitabine, vinorelbine, gemcitabine, and liposomal doxorubicin--commonly used in daily clinical practice. We identified 22 studies, of which ten investigated capecitabine, nine investigated vinorelbine, three investigated gemcitabine, and one investigated liposomal doxorubicin. The greatest amount of information was available for capecitabine and vinorelbine. These two drugs showed good efficacy. The disease control rate differed significantly between the four drugs, which is relevant in terms of how well tumour symptoms can be improved and whether quality of life can be maintained or even improved. To obtain more evidence of the efficacy and safety of chemotherapeutic agents used in this pretreated population of advanced breast cancer patients, randomised comparisons of the various drugs, as monotherapy and in combination with targeted agents, are needed., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Background: There is a continuing debate on the desirability of informing patients with cancer and thereby involving them in treatment decisions. On the one hand, information uptake may be hampered, and additional stress could be inflicted by involving these patients. On the other hand, even patients with advanced cancer desire information on risks and prognosis. To settle the debate, a decision aid will be developed and presented to patients with advanced disease at the point of decision making. The aid is used to assess the amount of information desired. Factors related to information desire are explored, as well as the ability of the medical oncologist to judge the patient's information desire. The effects of the information on patient well-being are assessed by comparing the decision aid group with a usual care group., Methods/design: This study is a randomized controlled trial of patients with advanced colorectal, breast, or ovarian cancer who have started treatment with first-line palliative chemotherapy. The trial will consist of 100 patients in the decision aid group and 70 patients in the usual care group. To collect complete data of 170 patients, 246 patients will be approached for the study. Patients will complete a baseline questionnaire on sociodemographic data, well-being measures, and psychological measures, believed to predict information desire. The medical oncologist will judge the patient's information desire. After disease progression is diagnosed, the medical oncologist offers the choice between second-line palliative chemotherapy plus best supportive care (BSC) and BSC alone. Randomization will take place to determine whether patients will receive usual care (n = 70) or usual care and the decision aid (n = 100). The aid offers information about the potential risks and benefits of both treatment options, in terms of adverse events, tumour response, and survival. Patients decide for each item whether they desire the information or not. Two follow-up questionnaires will evaluate the effect of the decision aid., Discussion: This study attempts to settle the debate on the desirability of informing patients with cancer. In contrast to several earlier studies, we will actually deliver information on treatment options to patients at the point of decision making.

This study was performed to obtain a comprehensive overview of the benefits and risks of second-line irinotecan monotherapy for advanced colorectal cancer. The literature was systematically reviewed to identify phase II and phase III trials that investigated the effect of second-line monotherapy with irinotecan. Thirty studies were included in this review: 25 phase II studies including 32 samples and five phase III studies including six samples. A disease control rate of greater than or equal to 50% was found in 23 out of 32 phase II samples, and one out of two phase III samples that reported disease control rate. Median time to progression was 2.7-6.0 months in phase II samples and 3.0-4.3 months in phase III samples. Median overall survival ranged from 6.6 to 16.1 months in phase II samples and 9.1-10.8 months in phase III samples. The most important severe adverse event in both phase II and phase III trials was diarrhea (5-39 and 15-36%, respectively), followed by nausea (1-24 and 5-14%), vomiting (2-22 and 6-14%), and asthenia (0-31 and 4-21%). Treatment-related mortality was 0-2% in phase II samples and 0-5% in phase III samples. Quality-of-life scores in phase II studies were associated with tumor response. In phase III studies, the quality of life while on treatment with irinotecan was similar to that of 5-fluorouracil, but better than supportive care alone. The quality of life on the weekly schedule was similar to the 3-weekly schedule. This study provides a comprehensive overview of the benefits and risks of second-line irinotecan. In general, second-line treatment with irinotecan is beneficial to patients.

Objective: Analysis of the available evidence on the improvement of walking in stroke patients with a dropped foot when using peroneus stimulation., Methods: A systematic review was performed to identify trials that investigated the orthotic effect of functional electrical stimulation (FES) on walking in stroke patients with a dropped foot. Two independent raters scored the methodological quality of the included articles. Walking speed and physiological cost index (PCI) were selected as the primary outcome measures. Studies that measured walking speed were pooled and a pooled difference including confidence interval was calculated., Results: Eight studies were included in the review, of which one was a randomized controlled trial. Methodological score ranged from 8 to 18 out of 19. Six studies measured walking speed. The pooled improvement in walking speed was 0.13 m/s (0.07-0.2) or 38% (22.18-53.8)., Conclusions: The present review suggests a positive orthotic effect of functional electrical stimulation on walking speed.