Virtual consultations: the experience of oncology and palliative care healthcare professionals.

OBJECTIVES: To maintain continuity of care during the Covid-19 pandemic, virtual consultations (VC) became the mainstay of patient-healthcare practitioner interactions. The aim of this study was to explore the views of oncology and palliative care healthcare professionals (HCPs) regarding the medium of VC. METHOD: A cross sectional mixed methodology observational study of oncology and palliative care HCPs, analysed via an inductive thematic approach. This was undertaken in accordance with relevant guidelines and regulations. RESULTS: 87 surveys were completed. Three master themes were identified. Personal, professional, and familial factors including patient age, illness and VC skillset all influenced practitioner's experience of VC. Relationships and connection were highlighted by survey respondents as important influences, with a perception that VC could reduce usual relationships with patients, compared to previous face-to-face consults. There was a perceived loss in these domains with VC. Sharing bad news and having challenging conversations was seen as particularly difficult via VC. Many survey respondents emphasized that they preferred to have first time consultations face-to-face, and not virtually. Within the domain of logistical and practical implications reduced travel and increased accessibility were seen as a significant benefit of VC. The inability to examine patients and concerns regarding missing clinical signs was emphasised as a significant worry, alongside the challenges faced with occasionally failing technology. CONCLUSION: VC were felt to have a role for those patients who are already known to professionals, where there was an established relationship. VC for difficult discussions and for unstable patients were felt to be inadequate. Triaging patient suitability prior to offering VC, with emphasis on the importance of patient choice, was seen as a priority in this new era of VC.

Speaking up at conference question and answer sessions-disruptive behaviour typography and assessment scale.

Conferences can be a space to present new research, network, and provide an opportunity for learning. Delegates can meet field leaders, peers, top doctors, and international colleagues in various areas of expertise. Challenging behaviours, in particular in the question and answer session, but also during lectures themselves, may reduce overall enjoyment and learning. The authors of this article have written an observational reflection on some observed behaviours and have come up with a 10-point assessment scale. The article aims to stimulate discussion on what constitutes disruptive conduct, but also serves as a guide for conference session chair-people and delegates to spot patterns of contribution that may be unwelcome.

How effective is virtual reality technology in palliative care? A systematic review and meta-analysis.

BACKGROUND: The efficacy of virtual reality for people living with a terminal illness is unclear. AIM: To determine the feasibility and effectiveness of virtual reality use within a palliative care setting. DESIGN: Systematic review and meta-analysis. PROSPERO (CRD42021240395). DATA SOURCES: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searched from inception to March 2021. Search terms included 'virtual reality' and 'palliative care'. Eligibility: (1) adult (>18 years old) with a terminal illness (2) at least one virtual reality session and (3) feasibility data and/or at least one patient outcome reported. The ROB-2 and ROBINS tools assessed risk of bias. The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) tool assessed the quality of the evidence. Standardised mean differences (Hedges's g) were calculated from the pre- and post-data. A DerSimonian-Laird random effects model meta-analysis was conducted. RESULTS: Eight studies were included, of which five were in the meta-analysis. All studies had at least some concern for risk of bias. Virtual reality statistically significantly improved pain (p = 0.0363), tiredness (p = 0.0030), drowsiness (p = 0.0051), shortness of breath (p = 0.0284), depression (p = 0.0091) and psychological well-being (p = 0.0201). The quality of the evidence was graded as very low due to small sample sizes, non-randomisation methods and a lack of a comparator arm. CONCLUSIONS: Virtual reality in palliative care is feasible and acceptable. However, limited sample sizes and very low-quality studies mean that the efficacy of virtual reality needs further research.

Sadness, despair and anger when a patient dies alone from COVID-19: A thematic content analysis of Twitter data from bereaved family members and friends.

BACKGROUND: To inform clinical practice and policy, it is essential to understand the lived experience of health and social care policies, including restricted visitation policies towards the end of life. AIM: To explore the views and experiences of Twitter social media users who reported that a relative, friend or acquaintance died of COVID-19 without a family member/friend present. DESIGN: Qualitative content analysis of English-language tweets. DATA SOURCES: Twitter data collected 7-20th April 2020. A bespoke software system harvested selected publicly-available tweets from the Twitter application programming interface. After filtering we hand-screened tweets to include only those referring to a relative, friend or acquaintance who died alone of COVID-19. Data were analysed using thematic content analysis. RESULTS: 9328 tweets were hand-screened; 196 were included. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss. Saying goodbye via video-conferencing technology was viewed ambivalently. Clinicians' presence during a death was little consolation. Anger, frustration and blame were directed at governments' inaction/policies or the public. The sadness of not being able to say goodbye as wished was compounded by lack of social support and disrupted after-death rituals. Users expressed a sense of political neglect/mistreatment alongside calls for action. They also used the platform to reinforce public health messages, express condolences and pay tribute. CONCLUSION: Twitter was used for collective mourning and support and to promote public health messaging. End-of-life care providers should facilitate and optimise contact with loved ones, even when strict visitation policies are necessary, and provide proactive bereavement support.

Talk CPR - a technology project to improve communication in do not attempt cardiopulmonary resuscitation decisions in palliative illness.

BACKGROUND: A national Do Not Attempt Cardiopulmonary Resuscitation policy was rolled out for the National Health Service in Wales in 2015. A national steering group led on producing information videos and a website for patients, carers and healthcare professionals, forming part of a quality improvement program. Videos were planned, scripted and produced with healthcare professionals and patient/carer representatives, and were completed with both English and Welsh language versions. The TalkCPR videos encourage and promote open discussion about Cardiopulmonary Resuscitation (CPR) and DNACPR in palliative care situations. METHODS: We worked with patient/carer groups to evaluate whether video resources to convey the salient facts involved in CPR and DNACPR decisions for people with palliative and life-limiting illness were acceptable or not. We conducted a mixed-method design service review in five phases to evaluate whether this technological resource could help. After creating video and website materials, they were evaluated by doctors, nurses and a patient/carer group. We also sent out one lightweight TalkCPR video media pad to each practice in Wales. These rechargeable electronic video media pads had communication videos pre-loaded for easy viewing, especially in areas with poor roaming data coverage. RESULTS: Videos were demonstrably acceptable to both patient and carer groups, and improved healthcare professional confidence and understanding. Videos went live on the TalkCPR website, in all Welsh Health Boards and on Youtube, and are now used in routine practice throughout Wales. CONCLUSION: This is the first time that DNACPR information videos are aimed directly at palliative care patients and carers, to explore this sensitive subject with them, and to encourage them to approach their doctor or nurse about it. The website, app and video media pads were developed by patients, the Digital Legacy Association, Welsh NHS IT services, Welsh Government, the Bevan Commission and the Dying Matters Charity in Wales 'Byw Nawr'. The GMC, the Royal College of General Practitioners and NICE have listed TalkCPR as a learning resource. There has also been a collaboration with Falmouth University Art College, who helped produce graphic designs to facilitate and encourage discussions about CPR and end of life care.

Buprenorphine for treating cancer pain.

BACKGROUND: Many patients with cancer experience moderate to severe pain that requires treatment with strong analgesics. Buprenorphine, fentanyl and morphine are examples of strong opioids used for cancer pain relief. However, strong opioids are ineffective as pain treatment in all patients and are not well-tolerated by all patients. The aim of this Cochrane review is to assess whether buprenorphine is associated with superior, inferior or equal pain relief and tolerability compared to other analgesic options for patients with cancer pain. OBJECTIVES: To assess the effectiveness and tolerability of buprenorphine for pain in adults and children with cancer. SEARCH METHODS: We searched CENTRAL (the Cochrane Library) issue 12 or 12 2014, MEDLINE (via OVID) 1948 to 20 January 2015, EMBASE (via OVID) 1980 to 20 January 2015, ISI Web of Science (SCI-EXPANDED & CPCI-S) to 20 January 2015, ISI BIOSIS 1969 to 20 January 2015. We also searched ClinicalTrials.gov (http://clinicaltrials.gov/; metaRegister of Controlled Trials (mRCT) (http://www.controlled-trials.com/mrct/), the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) search portal (http://apps.who.int/trialsearch/) and the Proceedings of the Congress of the European Federation of International Association for the Study of Pain (IASP; via European Journal of Pain Supplements) on 16 February 2015. We checked the bibliographic references of identified studies as well as relevant studies and systematic reviews to find additional trials not identified by the electronic searches. We contacted authors of included studies for other relevant studies. SELECTION CRITERIA: We included randomised controlled trials, with parallel-group or crossover design, comparing buprenorphine (any formulation and any route of administration) with placebo or an active drug (including buprenorphine) for cancer background pain in adults and children. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data pertaining to study design, participant details (including age, cancer characteristics, previous analgesic medication and setting), interventions (including details about titration) and outcomes, and independently assessed the quality of the included studies according to standard Cochrane methodology. As it was not feasible to meta-analyse the data, we summarised the results narratively. We assessed the overall quality of the evidence for each outcome using the GRADE approach. MAIN RESULTS: In this Cochrane review we identified 19 relevant studies including a total of 1421 patients that examined 16 different intervention comparisons.Of the studies that compared buprenorphine to another drug, 11 studies performed comparative analyses between the randomised groups, and five studies found that buprenorphine was superior to the comparison treatment. Three studies found no differences between buprenorphine and the comparison drug, while another three studies found treatment with buprenorphine to be inferior to the alternative treatment in terms of the side effects profile or patients preference/acceptability.Of the studies that compared different doses or formulations/routes of administration of buprenorphine, pain intensity ratings did not differ significantly between intramuscular buprenorphine and buprenorphine suppository. However, the average severity of dizziness, nausea, vomiting and adverse events as a total were all significantly higher in the intramuscular group relatively to the suppository group (one study).Sublingual buprenorphine was associated with faster onset of pain relief compared to subdermal buprenorphine, with similar duration analgesia and no significant differences in adverse event rates reported between the treatments (one study).In terms of transdermal buprenorphine, two studies found it superior to placebo, whereas a third study found no difference between placebo and different doses of transdermal buprenorphine.The studies that examined different doses of transdermal buprenorphine did not report a clear dose-response relationship.The quality of this evidence base was limited by under-reporting of most bias assessment items (e.g., the patient selection items), by small sample sizes in several included studies, by attrition (with data missing from 8.2% of the enrolled/randomised patients for efficacy and from 14.6% for safety) and by limited or no reporting of the expected outcomes in a number of cases. The evidence for all the outcomes was very low quality. AUTHORS' CONCLUSIONS: Based on the available evidence, it is difficult to say where buprenorphine fits in the treatment of cancer pain with strong opioids. However, it might be considered to rank as a fourth-line option compared to the more standard therapies of morphine, oxycodone and fentanyl, and even there it would only be suitable for some patients. However, palliative care patients are often heterogeneous and complex, so having a number of analgesics available that can be given differently increases patient and prescriber choice. In particular, the sublingual and injectable routes seemed to have a more definable analgesic effect, whereas the transdermal route studies left more questions.

Sunglasses for painful red eye.

We present the case of a 62-year-old man who developed an acutely painful red eye with severe photophobia while in an oncology ward after spinal radiotherapy. In a joint effort between palliative care, oncology and ophthalmology clinicians, he was diagnosed with herpes simplex viral keratitis. This was treated with topical and systemic antiviral medication, as well as corticosteroids. Alongside analgesics, he also benefited from a pair of sunglasses for severe, painful photophobia.

What makes for a 'Top Doc'? An analysis of UK press portrayals of so-called top doctors.

OBJECTIVE: To determine the characteristics of medical practitioners designated 'top doctor' or 'Top Doc' in the UK press. DESIGN: Observational study of news stories related to the term top doctor (or Top Doc) with analysis using data from publicly available databases. SETTING: News reports in the UK press accessed via a database from national newspapers from 1 January 2019 to 31 December 2019, prior to the COVID-19 pandemic. Stories relating to disciplinary/criminal matters were analysed separately. MAIN OUTCOME MEASURES: Results were cross-referenced with the General Medical Council register of medical practitioners for gender, year of qualification, whether on the general practitioner (GP) or the specialist register, and if on the specialist register, which specialty. RESULTS: There was a gender divide, with 80% of so-called top doctors being male. National top doctors had been qualified for a median time of 31 years. Top doctors are widely spread among specialties; 21% of top doctors were on the GP register. Officers of the British Medical Association and the various Royal Colleges are also well represented. 'Top doctors' facing disciplinary proceedings are more overwhelmingly male, working in hospital specialties and less obviously eminent in their field. CONCLUSION: There is no clear definition of a 'top doctor', nor are there objective leadership criteria for journalists to use when applying this label. Establishing a definition of 'top doctor', for instance, via the UK Faculty for Medical Leadership and Management, which offers postnominals and accreditation for high-achieving medical professionals, may reduce subjectivity.

Do not attempt cardiopulmonary resuscitation documentation: a quality improvement project.

OBJECTIVES: This quality improvement project looked at enhancing do not attempt cardiopulmonary resuscitation (DNACPR) documentation in a Welsh National Health Service trust. METHODS: A full clinical review cycle was carried out, evaluating 50 DNACPR forms in each data collection, totalling 100 forms. The all Wales DNACPR audit template was used to ensure standardised audit criteria. After completion of the first data collection, several changes were introduced: a new version national form was adopted by the trust; a series of education events was launched to improve understanding of the all Wales DNACPR policy. Electronic learning resources, such as the TalkCPR videos and electronic staff record modules, were widely disseminated. RESULTS: The evaluation of data demonstrated consistency in completion of forms. The introduction of the new national form in phase 2 of the audit resulted in clearer documentation of discussions held with patients and their significant others and documented reasons why and when conversations had not taken place. CONCLUSION: Documentation of DNACPR discussions in the trust demonstrably improved in several domains. A central electronic record for advance and future care plans, accessible by all relevant healthcare providers, patients and carers, may be an effective way of improving further on the current paper-based model.

Seeking Excellence in End of Life Care UK (SEECare UK): a UK multi-centred service evaluation.

OBJECTIVE: To evaluate the care of patients dying in hospital without support from specialists in palliative care (SPC), better understand their needs and factors influencing their care. METHODS: Prospective UK-wide service evaluation including all dying adult inpatients unknown to SPC, excluding those in emergency departments/intensive care units. Holistic needs were assessed through a standardised proforma. RESULTS: 88 hospitals, 284 patients. 93% had unmet holistic needs, including physical symptoms (75%) and psycho-socio-spiritual needs (86%). People were more likely to have unmet needs and require SPC intervention at a district general hospital (DGH) than a teaching hospital/cancer centre (unmet need 98.1% vs 91.2% p0.02; intervention 70.9% vs 50.8% p0.001) and when end-of-life care plans (EOLCP) were not used (unmet need 98.3% vs 90.3% p0.006; intervention 67.2% vs 53.3% p0.02). Multivariable analyses demonstrated the independent influence of teaching/cancer hospitals (adjusted OR (aOR)0.44 CI 0.26 to 0.73) and increased SPC medical staffing (aOR1.69 CI 1.04 to 2.79) on need for intervention, however, integrating the use of EOLCP reduced the impact of SPC medical staffing. CONCLUSION: People dying in hospitals have significant and poorly identified unmet needs. Further evaluation is required to understand the relationships between patient, staff and service factors influencing this. The development, effective implementation and evaluation of structured individualised EOLCP should be a research funding priority.

Advance and future care planning: strategic approaches in Wales.

BACKGROUND: In Wales, the term advance care planning now falls under the wider umbrella term 'Future Care Planning', which also includes patients with diminished mental capacity and their significant others, to engage in deciding and planning future care. Over the last 5 years, work has been undertaken to create education formats, resources and national documents, and this has been informed by a national Advance and Future Care Planning steering group and national conference, which included patient and carer representatives. This helped collate relevant data. AIM: We outline key strategic approaches in Wales with regard to future care planning. RESULTS: With data from our national conference and through feedback from stakeholders, a national repository of distinct resources, forms and education formats has been created. The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs. CONCLUSION: Advance and future care planning is an approach with many different facets. In Wales, we have found that some patients prefer a clearly set out, legally binding 'Advance Decision to Refuse Treatment' to guide their care, while others prefer a softer, guiding approach captured through an Advance Statement. All these formats are available to patients, carers and healthcare professionals, together with explanatory guidance notes, through a central Welsh website. Next steps involve getting a central electronic repository for these forms, which is accessible to healthcare providers and to patients.

Hypercalcaemia to hypocalcaemia: tetany as a side effect of intravenous bisphosphonate treatment.

A woman in her 40s with advanced bladder cancer was admitted to hospital with hypercalcaemia of malignancy. Initially, she presented with non-specific symptoms of malaise, fatigue and general deterioration. She was treated with intravenous fluids and zoledronic acid in order to bring her calcium levels down, but subsequently developed significant hypocalcaemia. This manifested as tetany in the hands in the form of bilateral carpopedal spasm. She also reported perioral paraesthesia. Bloods during her admission revealed deranged electrolytes, and her vitamin D level was on the lower scale of normal (25 nmol/L). The patient's symptoms improved with electrolyte replacement and oral baclofen for her symptomatically distressing wrist and hand muscle spasms. This case report is a reminder that bisphosphonates can cause significant hypocalcaemia with symptoms of tetany, even when they are given for initial hypercalcaemia. Baclofen worked well to improve symptoms.

'Do not resuscitate me in Barbados'.

New ways of encouraging discussion and education around the topic of do not attempt cardiopulmonary resuscitation (DNACPR) decisions in healthcare can prove challenging. Cardiopulmonary resuscitation is still portrayed as an intervention that is successful even in people with multiple long-term conditions. In 2020, during the first months of the COVID-19 pandemic, a letter from a palliative care doctor to his patient was read out as part of an online campaign entitled #ReadALetter, organised by the organisation Letters Live. The letter addresses misconceptions regarding DNACPR decisions and encourages thoughtful dialogue. In particular, it promotes an individualised approach for clinicians, and investigates one patient's journey: from initially rejecting the concept, to later on fully embracing it as part of his holistic care. A journey that took him to Barbados, amongst other places.

Advance care planning: the future.

OBJECTIVES: There is increased global focus on advance care planning (ACP) with attention from policymakers, more education programmes, laws and public awareness campaigns. METHODS: We provide a summary of the evidence about what ACP is, and how it should be conducted. We also address its barriers and facilitators and discuss current and future models of ACP, including a wider look at how to best integrate those who have diminished decisional capacity. RESULTS: Different models are analysed, including new work in Wales (future care planning which includes best interest decision-making for those without decisional capacity), Asia and in people with dementia. CONCLUSIONS: ACP practices are evolving. While ACP is a joint responsibility of patients, relatives and healthcare professionals, more clarity on how to apply best ACP practices to include people with diminished capacity will further improve patient-centred care.

Death cafe in the Welsh valleys-an appraisal.

BACKGROUND: A death cafe is an event where people drink, eat and discuss death. Death cafes do not follow a set structure and the events are held for free. The mission of death cafes is 'to increase awareness of death with a view to helping people make the most of their (finite) lives'. Death cafes have a proven track record in providing a safe place for people to have conversations about dying, death and grief. AIM: This study aims to contribute to the literature by providing a simple synthesis of comments made on the day of a death cafe in Wales by the attendees, and to allow the identification of further research questions. METHOD: A death cafe event was organised in the South Wales valleys, to encourage discussions about death during Dying Matters Awareness week in the UK, 10 May to 16 May 2019. RESULT: The event was well attended, and attendees recorded their thoughts about the event. CONCLUSION: Emerging themes were categorised into the following themes: communication, digital legacy, stigma, humour and a request for future events. Feedback showed that the death cafe had encouraged a greater dialogue about death and dying and facilitated conversations.

'Oh God, not a palliative': out-of-hours general practitioners within the domain of palliative care.

To date, the experiences of out-of-hours general practitioners with regard to palliative care patients and their management are yet to be evaluated, since the new General Medical Services contract came into force. In 2007 the National Institute for Health Research highlighted the need to identify factors that improve and hinder the delivery of optimum palliative out-of-hours care. By interviewing general practitioners who work out-of-hours shifts, this project explored factors influencing confidence in dealing with symptom control and palliative care provision outside regular working hours. Face-to-face semi-structured interviews were conducted with nine out-of-hours general practitioners employed by Serco. Interviews were conducted by a specialist doctor in palliative care who had in the past worked as an out-of-hours general practitioner. Interviews were analysed using Interpretative Phenomenological Analysis. General practitioners expressed concerns relating to constraints within the system provided by the private company-owned out-of-hours provider. Data from interviews was thematically very rich and brought out many different subject areas, some similar to previous interviews, some different. Sub-themes related to the process-driven aspects of working in out-of-hours: * Motivation, * Time-pressure constraints and continuity, * The out-of-hours doctor within the domain of palliative care, * Isolation within system. General practitioners stated that their motivation was mainly financial. There was clear concern about the lack of continuity, and inadequacy of notes and follow-up, and there was a demonstrated need for more learning on the topic of palliative care. Pressure from the out-of-hours provider to see more patients was felt to be oppositional with the need to spend adequate time with this vulnerable patient group. General practitioners felt as unwanted strangers who were viewed with suspicion by patients and carers in palliative care situations. It was clear that most of the doctors interviewed felt a strong sense of isolation when working out-of-hours shifts, and some felt less inclined to contact specialist palliative care services.

Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues.

BACKGROUND: Out-of-hours general practitioners (GPs) cover the community over a significant proportion of a given week, and palliative care patients are seen as a priority. Little is known about how well these GPs feel supported in their line of work and whether communication exchanges work well for the proportion of their patients who have palliative care needs. For this study, GPs who provide out-of-hours care were interviewed in order to explore factors that they identified as detrimental or beneficial for good communication between themselves, patients, relatives and other professionals, specifically to palliative care encounters. METHODS: Nine GPs were interviewed using face-to-face semi-structured interviews. All nine GPs worked regular out-of-hours sessions. Data from transcripts was analysed using Interpretative Phenomenological Analysis. RESULTS: A predominant theme expressed by GPs related to constraints within the system provided by the local private company owned out-of-hours provider. A strong feeling of 'being alone out there' emerged, with some GPs more willing to call for help than others, and others expressing their concern at access to pharmacies and medication being very inconsistent.Out-of-hours GPs felt left alone on occasion, unable to access daytime services and not knowing who to call for advice. Information hand-over systems from in-hours to out-of-hours with regard to palliative care were felt to be inadequate. Out-of-hours doctors interviewed felt left out of the care loop; handover sheets from specialist palliative care providers were a rarity. CONCLUSIONS: Out-of-hours services need to be mindful of the needs of the GPs they employ, in particular relating to the palliative care they provide in this setting. Other healthcare professionals should aim to keep their local out-of-hours service informed about palliative care patients they may be called to see.

State of the science: the doll is dead: simulation in palliative care education.

OBJECTIVES: Both simulation and high-fidelity simulation involving manikins, clinical training suites, wards, computer programs and theatres have established themselves in medical undergraduate and postgraduate education. Popular among students, they have been shown to be effective learning tools. Contrasted with this is the potential risk to patients and their proxy associated with learning 'at the bedside', which can pose a real challenge in medical and palliative settings. The need for education and training methods that do not expose the patient to preventable communication blunders from less experienced practitioners is a priority. METHODS: Here, we provide a summary review on the current literature and evidence for simulation and high-fidelity simulation in palliative and end-of-life care settings, and discuss potential uses of technologies including virtual and augmented reality in future training. RESULTS: The most common form of simulation in palliative medicine is often an actor-based role-play scenario with particular emphasis on communication skills. This is expensive and time-consuming to set up. Less evidence was found on the use of high-fidelity simulation in end-of-life care teaching. CONCLUSION: Palliative medicine has been slow to adapt to an educational method and environment that now is widely used across other areas of healthcare. There has been less emphasis on training with manikins and even less on using computer simulation and virtual reality environments to recreate challenging end-of-life care scenarios. We provide some examples of where this could benefit the curriculum.