New UK palliative medicine consultants: clinical and non-clinical preparedness after higher specialty training.

OBJECTIVES: Higher specialty trainees are expected to achieve clinical and non-clinical skills during training in preparation for a consultant role. However, evidence from many specialties from different countries suggests that new consultants are less prepared in non-clinical skills. The transition from trainee to a consultant phase can be challenging. The study aims to identify if new UK Palliative Medicine consultants, within 5 years of their appointment, feel prepared in clinical and non-clinical skills after completing specialty training and understand the support available for them. METHOD: An online survey, designed using previous literature, was distributed via the Association for Palliative Medicine email and social media. Five-point Likert scales and drop-down options to record preparedness were used. Ethics approval was obtained. RESULTS: Forty-four participants from different UK regions completed the survey; 80% were female. The majority felt very/extremely prepared in audit (84%), clinical skills (71%), interaction with colleagues (70%). Majority moderate preparation was human resources (50%), organisation structure (68%) and leadership (52%). Most were not at all or slightly prepared in financial management (70%) and in complaint management (43%). The majority (75%) reported that departmental colleagues gave the most support in stressful situations but almost 49% did not have formal support. CONCLUSION: New palliative medicine consultants require support with some non-clinical roles such as management of complaints and finances. This is consistent with findings from other specialties. New consultants would benefit from formal support. Future research could focus on how trainees could be supported to gain more experience in non-clinical domains.

How can technology be used to support communication in palliative care beyond the covid-19 pandemic: a mixed-methods national survey of palliative care healthcare professionals.

BACKGROUND: Developments in digital health have the potential to create new opportunities for healthcare professionals support delivery of palliative care. Globally, many palliative care professionals used digital health innovations to support communication with staff, patients and caregivers, during COVID-19 pandemic. However, there is limited data about the views of palliative care professionals of using digital health to support communication during the pandemic. We aimed to describe how palliative care professionals used technology to support communication (multidisciplinary team working, education and with patients and family caregivers) during the COVID-19 pandemic. METHOD(S): UK based palliative care healthcare professionals completed an electronic questionnaire to describe their use of digital health, during the COVID-19 pandemic, to support (1) communication within the multidisciplinary team (MDT), (2) education and (3) to support communication with patients and carers. RESULTS: Two hundred and thirty-four palliative care professionals participated. Most (n = 227, 97%) described an increase in their use of digital health, to support communication, since the start of the COVID-19 pandemic. We identified benefits and challenges for digital health communication, which we summarised into themes, including 'a new way of working', 'developing a new approach to learning' and 'impacting care'. CONCLUSION(S): Since the pandemic, palliative care professionals have increased their use of digital health to support communication in clinical practice. We have identified facilitators and barriers for future practice. Further work should identify the levels of support needed for organisations to ensure that digital health interventions are meaningfully used to help palliative care professionals effectively communicate with patients, caregivers and staff.

A grounded theory study exploring palliative care healthcare professionals' experiences of managing digital legacy as part of advance care planning for people receiving palliative care.

BACKGROUND: Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. AIM: To identify palliative care healthcare professionals' experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. DESIGN: A constructivist grounded theory approach was used to understand healthcare professionals' experiences of managing digital legacy. Semi-structured interviews were carried out. SETTING AND PARTICIPANTS: Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. RESULTS: Four theoretical categories were found to revolve around an emergent theory 'understanding the impact of digital legacy' which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were 'accessing digital legacy'; 'becoming part of advance care planning'; 'impacting grief and bereavement'; and 'raising awareness of digital legacy'. CONCLUSIONS: The emerging theory 'understanding the impact of digital legacy' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations.

Identification of Digital Health Priorities for Palliative Care Research: Modified Delphi Study.

BACKGROUND: Developments in digital health have the potential to transform the delivery of health and social care to help citizens manage their health. Currently, there is a lack of consensus about digital health research priorities in palliative care and a lack of theories about how these technologies might improve care outcomes. Therefore, it is important for health care leaders to identify innovations to ensure that an increasingly frail population has appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step in determining how finite resources should be allocated to a field saturated with rapidly developing innovation. OBJECTIVE: The aim of this study is to identify research priority areas for digital health in palliative care. METHODS: We selected digital health trends, most relevant to palliative care, from a list of emerging trends reported by a leading institute of quantitative futurists. We conducted 2 rounds of the Delphi questionnaire, followed by a consensus meeting and public engagement workshop to establish a final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives on the agreed priorities. RESULTS: A total of 103 experts (representing 11 countries) participated in the first Delphi round. Of the 103 experts, 55 (53.3%) participated in the second round. The final consensus meetings were attended by 10.7% (11/103) of the experts. We identified 16 priority areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of diseases, education and training, communication, care coordination, and research methodology. We summarized the priority areas into eight topics: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, smart home, biotechnology, and digital legacy. CONCLUSIONS: The priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely, and safely and do not cause unintentional harm.

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.

Investigation and management of iron deficiency anaemia in a specialist palliative care setting and the role of intravenous iron: a descriptive analysis of hospice data.

Background: Anaemia is common in hospice populations and associated with significant symptom burden. Guidelines recommend investigating for and treating iron deficiency (ID), but there is little evidence of this practice in palliative care populations. This report describes the results of investigations for and subsequent management of ID in a UK hospice. Methods: This is a descriptive study of routine clinical data. Laboratory and clinical records were reviewed retrospectively for 12 months following the implementation, in August 2018, of routine investigation for ID amongst patients with clinically relevant anaemia in whom treatment would be considered. Absolute (AID) and functional iron deficiency (FID) were diagnosed using established definitions and treatments recorded. Results: Iron status was evaluated in 112 cases, representing 25/110 (22.7%) of those with mild, 46/76 (60.5%) moderate and 41/54 (75.9%) severe anaemia. Twenty-eight (25%) were defined as having AID, 48 (42.8%) FID and 36 (32%) no ID. There was a significant difference between groups in symptoms triggering haemoglobin check and diagnosis, with a higher proportion of patients with classic symptoms of anaemia and gastrointestinal malignancy in those with AID. Intravenous iron was given on 12 occasions in the hospice with no major adverse events. Subjective symptom benefit in 7 cases and a statistically significant increase in overall mean haemoglobin were observed. Conclusions: This report describes the outcome of investigations for iron deficiency in patients with clinically significant anaemia in a UK hospice. Results indicate iron deficiency is common and can be safely treated with intravenous iron replacement, within current guidelines, in a hospice setting. Further research should define the optimum use of this approach in palliative care patients.

Many patients supported by hospices have anaemia. This means there is a reduction in the molecule, haemoglobin, which carries oxygen in the blood. Symptoms can include tiredness and shortness of breath. In severe cases, patients may be given a blood transfusion, however this carries significant risks and blood is a limited resource. Anaemia can be caused by a lack of iron. Iron deficiency can be treated with iron tablets or injections. However, iron tablets can have a lot of side effects and patients generally have to go to hospital for iron injections. There is little information about how important this is for anaemia that we see in hospices and how it should be treated. We looked at the results of tests for iron deficiency done at a UK hospice in day-to-day practice. The hospice started doing these tests for appropriate patients with anaemia after it was recommended in recent guidelines. Out of the tests performed, a quarter showed iron deficiency. There were a higher number of patients with typical symptoms of anaemia and patients with a cancer of the gut in the group with iron deficiency. We also looked at treatment given for iron deficiency. Twelve were given iron injections at the hospice, which hasn't been reported before. This study was not designed to investigate how well this worked but there were no major side effects. It also seemed to improve blood counts and help symptoms in most. Overall, this study showed that we were able to test for iron deficiency at the hospice, we found it often and, in certain patients, were able to treat it with iron injections at the hospice. Research in the future should look at how we could best use this approach. It should also look at the effectiveness of iron injections in hospice patients.

Robotic technology for palliative and supportive care: Strengths, weaknesses, opportunities and threats.

BACKGROUND: Medical robots are increasingly used for a variety of applications in healthcare. Robots have mainly been used to support surgical procedures, and for a variety of assistive uses in dementia and elderly care. To date, there has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care. AIM: The objective of this article is to examine the possible future impact of medical robotics on palliative, supportive care and end-of-life care. Specifically, we will discuss the strengths, weaknesses, opportunities and threats (SWOT) of this technology. METHODS: A SWOT analysis to understand the strengths, weaknesses, opportunities and threats of robotic technology in palliative and supportive care. RESULTS: The opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. However, there are a number of technical, societal, economic and ethical factors which need to be considered to ensure meaningful use of this technology in palliative care. CONCLUSION: Robotics could have a number of potential applications in palliative, supportive and end-of-life care. Future work should evaluate the health-related, economic, societal and ethical implications of using this technology. There is a need for collaborative research to establish use-cases and inform policy, to ensure the appropriate use (or non-use) of robots for people with serious illness.

Bioelectrical impedance vector analysis (BIVA) as a method to compare body composition differences according to cancer stage and type.

BACKGROUND & AIMS: Bioelectrical impedance vector analysis (BIVA) is a non-invasive method of measuring human body composition. This offers the potential to evaluate nutritional and hydration states in cancer. Analysis of BIVA data using the z-score method (the number of standard deviations away from the mean value of the reference group) has the potential to facilitate comparisons between different cancer types. The aim of this study was to use the BIVA Reactance (R)/Reactance (Xc) z-score method to evaluate body composition differences in cancer, using data from previously published BIVA studies. METHODS: Previous studies using BIVA in cancer were identified from the literature. Bioimpedance measurements were analysed using the BIVA RXc z-score graph. The mean impedance vectors from the studied populations were transformed into standard deviates (with respect to the mean and standard deviation of the reference populations). Body composition was classified according to vector placement (i.e. normal, athletic, cachectic, oedematous and dehydrated). RESULTS: Seven male and three cancer female populations were evaluated. Body composition was classified as normal for the majority (n = 5), followed by cachexia (n = 4) and athletic (n = 1) respectively. Variation in body composition for the studied populations appeared to be related to gender, disease type and severity. CONCLUSIONS: The BIVA RXc z-score method has potential to evaluate body composition differences between cancer groups. This method can study body composition, according to cancer type, stage, gender and ethnicity. Limitations of the method relate to issues concerning the appropriate use of reference populations and variability between bioimpedance analysers. Better body composition assessment has the potential to personalise therapeutic, nutritional and hydration management. Further work is essential to facilitate in-depth evaluation in these areas, in order to achieve meaningful use of BIVA in clinical practice.

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.

Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast.

OBJECTIVES: Podcasts have the potential to facilitate communication about palliative care with researchers, policymakers and the public. Some podcasts about palliative care are available; however, this is not reflected in the academic literature. Further study is needed to evaluate the utility of podcasts to facilitate knowledge-transfer about subjects related to palliative care. The aims of this paper are to (1) describe the development of a palliative care podcast according to international recommendations for podcast quality and (2) conduct an analysis of podcast listenership over a 14-month period. METHODS: The podcast was designed according to internationally agreed quality indicators for medical education podcasts. The podcast was published on SoundCloud and was promoted via social media. Data were analysed for frequency of plays and geographical location between January 2015 and February 2016. RESULTS: 20 podcasts were developed which were listened to 3036 times (an average of 217 monthly plays). The Rich Site Summary feed was the most popular way to access the podcast (n=1937; 64%). The mean duration of each podcast was 10 min (range 3-21 min). The podcast was listened to in 68 different countries and was most popular in English-speaking areas, of which the USA (n=1372, 45.2%), UK (n=661, 21.8%) and Canada (n=221, 7.3%) were most common. CONCLUSIONS: A palliative care podcast is a method to facilitate palliative care discussion with global audience. Podcasts offer the potential to develop educational content and promote research dissemination. Future work should focus on content development, quality metrics and impact analysis, as this form of digital communication is likely to increase and engage wider society.

The Association of Hydration Status with Physical Signs, Symptoms and Survival in Advanced Cancer-The Use of Bioelectrical Impedance Vector Analysis (BIVA) Technology to Evaluate Fluid Volume in Palliative Care: An Observational Study.

BACKGROUND: Hydration in advanced cancer is a controversial area; however, current hydration assessments methods are poorly developed. Bioelectrical impedance vector analysis (BIVA) is an accurate hydration tool; however its application in advanced cancer has not been explored. This study used BIVA to evaluate hydration status in advanced cancer to examine the association of fluid status with symptoms, physical signs, renal biochemical measures and survival. MATERIALS AND METHODS: An observational study of 90 adults with advanced cancer receiving care in a UK specialist palliative care inpatient unit was conducted. Hydration status was assessed using BIVA in addition to assessments of symptoms, physical signs, performance status, renal biochemical measures, oral fluid intake and medications. The association of clinical variables with hydration was evaluated using regression analysis. A survival analysis was conducted to examine the influence of hydration status and renal failure. RESULTS: The hydration status of participants was normal in 43 (47.8%), 'more hydrated' in 37 (41.1%) and 'less hydrated' in 10 (11.1%). Lower hydration was associated with increased symptom intensity (Beta = -0.29, p = 0.04) and higher scores for physical signs associated with dehydration (Beta = 10.94, p = 0.02). Higher hydration was associated with oedema (Beta = 2.55, p<0.001). Median survival was statistically significantly shorter in 'less hydrated' patients (44 vs. 68 days; p = 0.049) and in pre-renal failure (44 vs. 100 days; p = 0.003). CONCLUSIONS: In advanced cancer, hydration status was associated with clinical signs and symptoms. Hydration status and pre-renal failure were independent predictors of survival. Further studies can establish the utility of BIVA as a standardised hydration assessment tool and explore its potential research application, in order to inform the clinical management of fluid balance in patients with advanced cancer.

Longitudinal bioimpedance assessments to evaluate hydration in POEMS syndrome.

Polyneuropathy, organomegaly, endocrinopathy, M-protein and skin changes (POEMS) syndrome is a rare paraneoplastic disorder associated with an underlying plasma cell dyscrasia and multiorgan failure. POEMS syndrome is potentially fatal and adversely affects quality of life. Oedema is common with many patients affected by pleural effusions, ascites and lower limb oedema. Bioelectrical impedance vector analysis (BIVA) is a non-invasive assessment tool, which enables rapid bedside assessments of nutrition and hydration. This paper describes the use of sequential BIVA assessments to evaluate the response to diuretic therapy in a woman aged 52 years with POEMS syndrome. This case illustrates the potential to use BIVA to conduct longitudinal assessments of hydration status. This provides opportunities for further research using BIVA to monitor hydration and response to interventions. This may be useful in specific situations, for example at the end of life.

Collecting biological material from palliative care patients in the last weeks of life: a feasibility study.

OBJECTIVE: To assess the feasibility of prospectively collecting biological samples (urine) from palliative care patients in the last weeks of life. SETTING: A 30-bedded specialist hospice in the North West of England. PARTICIPANTS: Participants were adults with a diagnosis of advanced disease and able to provide written informed consent. METHOD: Potential participants were identified by a senior clinician over a 12-week period in 2014. They were then approached by a researcher and invited to participate according to a developed recruitment protocol. OUTCOMES: Feasibility targets included a recruitment rate of 50%, with successful collection of samples from 80% who consented. RESULTS: A total of 58 patients were approached and 33 consented (57% recruitment rate). Twenty-five patients (43%) were unable to participate or declined; 10 (17%) became unwell, too fatigued, lost capacity, died or were discharged home; and 15 (26%) refused, usually these patients had distressing pain, low mood or profound fatigue. From the 33 recruited, 20 participants provided 128 separate urine samples, 12 participants did not meet the inclusion criteria at the time of consent and 1 participant was unable to provide a sample. The criterion for a urinary catheter was removed for the latter 6 weeks. The collection rate during the first 6 weeks was 29% and 93% for the latter 6 weeks. Seven people died while the study was ongoing, and another 4 participants died in the following 4 weeks. CONCLUSIONS: It is possible to recruit and collect multiple biological samples over time from palliative care patients in the last weeks and days of life even if they have lost capacity. Research into the biological changes at the end of life could develop a greater understanding of the biology of the dying process. This may lead to improved prognostication and care of patients towards the end of life.

Social media and palliative medicine: a retrospective 2-year analysis of global Twitter data to evaluate the use of technology to communicate about issues at the end of life.

BACKGROUND: Social media describes technological applications which are used to exchange information in a virtual environment. The use of social media is increasing, in professional and social contexts, on a variety of platforms such as Twitter; however, the scope and breadth of its use to discuss end-of-life care has not previously been reported. AIMS: To determine the frequency, sentiment and trend of Twitter 'tweets' containing palliative care-related identifiers (hashtags) and/or phrases sent by users over a 2-year period. METHODS: A 2-year retrospective analysis of Twitter posts (tweets), between the 1 August 2011 to 31 July 2013, using a social media analytics tool: TopsyPro. Thirteen search terms were identified and analysed for tweet volume, frequency, sentiment and acceleration. RESULTS: A total of 683.5K tweets containing a combination of 13 palliative care terms were analysed. The tweet volume for all terms increased by 62.3% between 2011-2012 (262.5K) and 2012-2013 (421K). The most popular terms include 'end-of-life' (210K), #hpm (114K) and 'palliative care' (93.8K). Sentiment was high with 89% of tweets rated more positive than all other tweets sent on Twitter during this period. The term 'Liverpool Care Pathway' experienced the highest percentage increase in tweets (55% increase) reaching a peak in July 2013. CONCLUSIONS: A lot of discussion about palliative care is taking place on Twitter, and the majority of this is positive. Social media presents a novel opportunity for engagement and ongoing dialogue with public and professional groups.

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.