Qualified and motivated, but limited by specialty-specific barriers: a national survey of UK Palliative Medicine consultants research experience.

OBJECTIVES: Providing high-quality safe palliative care requires high-quality clinically driven research. Little is known about how to optimise clinical research capacity in this field.To understand interest and capacity to conduct clinical research in palliative medicine and identify key facilitators and barriers, by surveying palliative medicine consultants and academic trainees. METHODS: National online survey exploring experience in conducting research, including facilitators and barriers. Sent to all current UK palliative medicine consultants, and previous/current academic trainees. Descriptive statistics are reported with framework analysis of free text responses. RESULTS: 195 surveys were submitted including 15 respondents with Integrated Academic Training (IAT) experience. 78% (n=140/180) of consultants were interested in conducting research. Despite this enthusiasm, 83% had no allocated time within their job plan. 88% of those who undertook IAT would recommend IAT, but 60% reported difficulty transitioning from academic trainee to research active consultant.Barriers to research included; insufficient research culture and integration, with small teams working in a mixture of National Health Service (NHS) and non-NHS settings, leading to isolated, silo working. Even those who had undertaken IAT, felt a 'cliff edge' in opportunities after completing IAT. Filling service gaps was routinely prioritised over research activity. CONCLUSION: Palliative medicine consultants, including those who have completed academic training want to conduct research but overwhelming barriers limit activity. A palliative care-specific strategy that permeates different palliative care settings, promotes interspecialty collaboration and improves the current infrastructure for palliative care research to maximise gains from IAT and embed a research culture are suggested.

Do interventions for malignant pleural effusions impact on patient reported fatigue levels?

BACKGROUND: Malignant pleural effusions (MPEs) are common. They are associated with a poor prognosis and high symptom burden. Previous studies have focused primarily on breathlessness. AIM: To evaluate whether interventions to treat MPEs impact on fatigue levels and to test the feasibility of the methodology. METHODS: A prospective pilot study was conducted at a single Trust's adult pleural service over a 7 month period. It used a validated outcome measure, Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) to assess fatigue levels pre-intervention for MPE, which was repeated at 7, 14 and 30 days intervals. Data were gathered on patient demographics and potential confounding factors. The feasibility of the methodology was assessed. Recruitment targets had to be revised due to the COVID-19 pandemic. RESULTS: Mean age was 73 years (range 44 to 88), with a predominance of lung cancer and mesothelioma (n=16/25). Patients were willing to participate and the methodology appeared acceptable. High attrition rate was due to deteriorating participant health, rather than unacceptability of study design. For those who completed 30-day follow up (n=11/25), there was an improvement in fatigue scores. The majority of patients screened were recruited to the trial. CONCLUSION: This study met its aims in confirming the acceptability of the study protocol and suggested that intervention for MPE improved fatigue levels. However, the sample size was small and a further larger statistically powered study should be undertaken before conclusions can be drawn to influence clinical practice.

Right needle, right patient, right time? A national flash-mob audit of thromboprophylaxis in palliative care.

BACKGROUND: The prevention of hospital associated thrombosis in palliative care remains controversial yet many countries recommend the documented risk assessment and where appropriate pharmacological prophylaxis of inpatients with advanced cancer. AIM: To audit adherence to national guidelines which require hospitalised patients to be risk assessed and receive appropriate thromboprophylaxis. DESIGN: A one day "flash-mob" audit across multiple clinical inpatient sites across the United Kingdom. SETTING/PARTICIPANTS: Inpatients receiving palliative care within hospitals, hospices and specialist palliative care units across the United Kingdom. RESULTS: Data were collected from 1125 patients (514 hospital and 611 hospice/specialist palliative care units). Appropriate thromboprophylaxis was observed in 90 % of hospital and 90 % hospice/specialist palliative care units. Documented risk assessment was only found in 79 % and 71 % of patient notes respectively. Pharmacological thromboprophylaxis was contraindicated in 88 % of hospice/specialist palliative care unit patients due to bleeding risk or receiving end-of-life care. Twenty-four percent of patients in hospital had contraindications due to receiving end of life care, bleeding risk and thrombocytopenia. Patients in hospice/specialist palliative care units were of poorer performance status prior to admission with a history of gradual deterioration. Hospitalised patients were more likely to have been admitted following an acute deterioration of previous good performance status. CONCLUSION: Thromboprophylaxis guidelines were followed correctly for the majority of patients. There were considerable differences in the demographics of patients according to place of admission. Patients admitted to hospice/specialist palliative care units were sicker and had more contraindications to prophylaxis than those admitted to hospital. Thromboprophylaxis focused research data conducted in hospices is unlikely to be applicable to the care of palliative care patients admitted acutely to hospital.

If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit.

BACKGROUND: Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. AIMS: To describe the development of a new innovative model of care, a long-term palliative care unit. DESIGN: Description of the model, with secondary analysis of retrospective routinely gathered data. SETTING: Hartlepool in North-East England, includes some of the most socio-economically deprived areas in England, with associated high-levels of multimorbidity. In 2014, the eight-bedded hospice, opened an additional 10-bedded long-term unit. RESULTS: Within 7 years, 199 patients were admitted to the long-term unit. With 98% remained there until death. All patients were offered a full holistic assessment and advance care planning, with 24/7 access to specialist palliative care support. None were transferred to hospital. In general, patients from socio-economically deprived areas are less likely to access hospice care, however, 27% of all admissions to the long-term unit were from areas in the 10% most deprived in England (with 41% admitted from areas in the poorest quintile). CONCLUSION: We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.

'Sadly I think we are sort of still quite white, middle-class really' - Inequities in access to bereavement support: Findings from a mixed methods study.

BACKGROUND: Voluntary and community sector bereavement services are central to bereavement support in the UK. AIM: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. DESIGN: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. SETTINGS/PARTICIPANTS: 147 services participated in the survey; 24 interviews were conducted across 14 services. RESULTS: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. CONCLUSIONS: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.

Requested withdrawal of gastrostomy feeding in motor neurone disease.

NICE (National Institute for Health & Care Excellence) guidance recommends that healthcare professionals with expertise in palliative care should be an integral part of the multidisciplinary team in managing patients with motor neuron disease (MND). Those in the poorest prognostic group may benefit from early referral to help manage rapidly progressive symptoms, psychological distress and offer additional support with complex decision-making and early robust advance care planning. Patients frequently develop dysphagia and gastrostomy feeding can be used to prolong survival and improve quality of life. As the disease progresses patients may request withdrawal of life-sustaining treatment such as gastrostomy feeding; however, a literature search found no evidence or guidance on how best to facilitate this. We present the case of a patient with MND admitted to the hospice inpatient unit requesting withdrawal of gastrostomy feeding, outline the challenges and need for further consensus guidelines to inform practice.

Palliative care inpatients favour research participation irrespective of prognosis, performance or socioeconomic status: multicentre cohort study.

OBJECTIVES: Palliative care needs to embrace research to guide service development and effective symptom management. Healthcare professionals often feel research is too burdensome for patients who have poor performance status or are near the end of life. Many studies exclude these groups from participating.We aimed to identify whether specialist palliative care inpatients would wish to take part in research and whether preference varies according to study design, demographics, diagnosis, performance status and prognosis. METHODS: 100 inpatients in two National Health Service specialist palliative care units and one independent hospice in the Northeast of England completed a short questionnaire about preferences for involvement in research. RESULTS: 92% of participants stated they were interested in being involved in research. This was mostly unaffected by age, diagnosis, prognosis, performance and socioeconomic status. Three-quarters were within the last 3 months of life. Simple questions or interviews were the preferred methodology, whereas only half of patients would want further investigations or additional medications and fewer still wanted to participate in online activities, lifestyle change or group activities. CONCLUSIONS: Palliative care inpatients welcome the opportunity to be involved in research and should not be excluded on the grounds of advanced disease, poor prognosis and low performance status.

UK Palliative trainees Research Collaborative (UK-PRC): the first 5 years - 0-100 study sites.

OBJECTIVES: Palliative care research suffers from underfunding and a workforce spread across multiple settings leading to a lack of large-scale studies. To facilitate multisite research and audit we set up the UK Palliative trainees Research Collaborative (UKPRC), the first national trainee-led audit and research collaborative in palliative care. Here, we critically review the progress and potential of the UKPRC since its inception in 2016, identifying key challenges and facilitators. Members of the UKPRC steering committee collaborated to write this reflection, reviewing existing evidence regarding trainee-led research collaboratives. FINDINGS: The UKPRC has representation from 16/19 UK training regions. Projects are run by a core team; local collaborators collect data at each site. The collaborative is supported by academic leads and newly qualified consultants to develop a culture of continuous improvement in practice. We have conducted four national projects to date, including an audit covering 119 sites. Facilitators for our work include a focus on inclusivity and national representation; support from recently qualified consultants to ensure continuity; and taking a pragmatic approach, focusing initially on straightforward projects to build momentum. Challenges include the step from national audit to multisite, patient-facing research and maintaining continuity in a membership with high turnover. CONCLUSIONS: There is potential to change practice through large scale data collection via the trainee-led collaborative model. Collaboration is especially important in a small specialty with limited resources. The UKPRC has demonstrated 'proof of concept' and has the potential to support and sustain a culture where research can flourish within palliative care.

Head and neck cancer end of life care: complex challenges.

Head and neck cancers frequently carry a poor prognosis and are commonly associated with complex medical needs and symptoms. Timing of referral to specialist palliative care teams (SPCTs) is challenging. We present the case of a 57-year-old woman with locally highly advanced head and neck cancer. The patient had highly complex medical needs including a tracheostomy to maintain airway patency, artificial feeds via jejunostomy and impaired communication due to hearing loss, tracheostomy and fatigue. She required support with advance care planning and complex symptom management of pain related to abdominal skin excoriation due to leakage of gastric contents; bleeding of necrotic tumour; anxiety and discomfort due to displacement of tracheostomy. Care by an integrated SPCT allowed smooth transition from hospital to community settings with smooth ongoing management despite highly complex needs. This complex symptom management included tracheostomy removal in the home towards the end of life.

Palliative care simulation for internal medicine trainees: development and pilot study.

OBJECTIVES: Shape of training has recognised that 'Managing End-of-Life and Applying Palliative Care Skills' is a key competency for internal medicine trainees. It provides the opportunity and challenge to improve palliative care training for generalist physicians. Simulation has been recognised internationally as a holistic teaching and assessment method. This study aimed to produce a palliative medicine simulation training package for internal medicine trainees for delivery by palliative medicine trainees providing the former opportunity to practice assessment and management of patients with life-limiting illness and the latter teaching and management opportunities. METHODS: A regional group of palliative medicine trainees were trained in simulation and debrief. Nominal and focus group techniques designed a simulation training package. Learning outcomes were mapped to the internal medicine curriculum descriptors. RESULTS: Palliative simulation for internal medicine trainees (PALL-SIM-IMT) is a training package meeting internal medicine trainees' curriculum requirements. Regional pilots have demonstrated feasibility for delivery by palliative medicine trainees and improvement in recipients' confidence in all curriculum descriptors. CONCLUSIONS: PALL-SIM-IMT can aid competency achievement for the provision of generalist palliative care by internal medicine trainees. It allows reciprocal development of palliative medicine trainees' leadership and teaching skills. National adoption and evaluation is ongoing.

Cancer care disparities in the LGBT community.

PURPOSE OF REVIEW: A review of the recent literature (2019-2021) around the current disparities in care for LGBT individuals with cancer. RECENT FINDINGS: Recent studies highlight that there continue to be multiple barriers to LGBT individuals with cancer receiving equity of care. These include healthcare professionals (HCPs) lack of knowledge of LGBT-specific issues and an under appreciation of the importance of sexuality and gender in order to provide holistic, person-centred care. Suggestions are made of how embedding training, updating guidelines, and improving communication skills could help to address this care disparity. SUMMARY: Lesbian, gay, bisexual and/or trans (LGBT) individuals have an increased risk of certain illnesses, including certain types of cancer. They belong to a minority group, who may be subjected to discrimination and so are less likely to present for screening or engage with healthcare professionals. This review of recent studies highlights that LGBT individuals still fear discrimination from HCPs, and that many HCPs themselves admit to poor knowledge of LGBT specific issues and the importance of sexuality and gender identity when providing cancer care. Advances in education programmes, including enhanced communication skills and creating LGBT safe spaces are all vital in reducing the disparity in LGBT cancer care.

Palliative Medicine Specialist Trainee Research experience, interest and opportunities: a national survey.

OBJECTIVES: Despite the acknowledged benefits of research, Palliative Medicine receives minimal research funding and has few dedicated research training posts. This study investigated the opportunities and barriers to participating in research for the current cohort of UK Palliative Medicine Specialist Trainees (PMSTs), to better understand the opportunities to improve evidence-based practice within the specialty. METHODS: Two surveys, one for PMSTs and a second for training programme directors (TPDs), were developed. Surveys were piloted and then reviewed by the UK Palliative trainee Research Collaborative and the Palliative Medicine Specialty Advisory Committee (SAC) before distribution. All current PMSTs and TPDs representing all of the UK training regions (n=13) were invited to complete the appropriate survey. RESULTS: Overall, 85% (11/13) and 45% (102/225) of TPDs and PMSTs responded, respectively. Almost all (92%) PMSTs reported that they were either 'very interested' or 'quite interested' in taking part in clinical research. PMSTs generally felt that educationaland clinical supervisors were supportive of them taking part in research; however, few (35%) believed they had access to personnel with adequate research experience to provide practical support. Opportunity for appropriate research supervision varied considerably by training region. Where research was being conducted, it was often conducted in trainees' personal time due to the wide regional variation in dedicated research time. CONCLUSION: Despite significant interest in clinical research and support by TPDs and clinical supervisors, access to experienced researchers and equitable protected research time by region needs urgent attention to enhance progress in evidence-based palliative medicine.

Inequalities in awareness and availability of bereavement services in North-East England.

OBJECTIVES: National guidance recommends equality in access to bereavement services; despite this, awareness and availability appears inconsistent. The aim of this study was to explore availability and accessibility of bereavement services across the North-East of England and to highlight issues potentially applicable across the UK, at a time of unprecedented need due to the impact of COVID-19. METHODS: Phase 1: an eight item, web-based survey was produced. A survey link was cascaded to all GP practices (General Practitioners) in the region. Phase 2: an email was sent to all services identified in phase 1, requesting details such as referral criteria and waiting times. RESULTS: All 392 GP practices in the region were invited to participate. The response rate was 22% (85/392). Twenty-one per cent (18/85) of respondents reported that they do not refer patients, comments included 'not aware of any services locally'. A total of 36 services were contacted with 72% responding with further information. Most bereavement specific support was reliant on charity-funded services including hospices, this sometimes required a pre-existing link with the hospice. Waiting times were up to 4 months. CONCLUSIONS: Although multiple different, usually charity-funded services were identified, awareness and accessibility were variable. This survey was conducted prior to the COVID-19 pandemic, where complex situations surrounding death is likely to impact on the usual grieving process and increase the need for bereavement support. Meanwhile, charities providing this support are under severe financial strain. There is an urgent need to bridge the gap between need and access to bereavement services.

Denosumab-induced hypocalcaemia in metastatic gastric cancer.

Hypocalcaemia in malignancy is infrequently reported and the underlying cause is often multifactorial. Denosumab, an antiresorptive medication, can be used to treat a number of cancer-related complications including hypercalcaemia, metastatic bone pain and to reduce fracture-events. We present a case of a hospice inpatient with profound and recurring hypocalcaemia following a single denosumab infusion which required repeated hospitalisation, for intravenous calcium, alongside a prolonged course of vitamin D and electrolyte replacement. The case highlights the risk of hypocalcaemia with denosumab use, together with the need to identify and treat vitamin D deficiency in both the prevention and management of such a complication.