Objectives: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs).
Methods: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs.
Results: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43–86 years; men 61%; survival mean 86 (SD 108.5) range 1–345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT.
Conclusions: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.
OBJECTIVES: Advance care planning (ACP) is essential for patient-centred care in the last phase of life. There is little evidence available on the safety of ACP. This study characterises and explores patient safety incidents arising from ACP processes in the last phase of life.
METHODS: The National Reporting and Learning System collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports, April 2005-December 2015. Mixed-methods, combining structured data coding, exploratory and thematic analyses were undertaken to describe incidents, underlying causes and outcomes, and identify areas for improvement.
RESULTS: We identified 70 reports in which ACP caused a patient safety incident across three error categories: (1) ACP not completed despite being appropriate (23%, n=16). (2) ACP completed but not accessible or miscommunicated between professionals (40%, n=28). (3) ACP completed and accessible but not followed (37%, n=26). Themes included staff lacking the knowledge, confidence, competence or belief in trustworthiness of prior documentation to create or enact ACP. Adverse outcomes included cardiopulmonary resuscitation attempts contrary to ACP, other inappropriate treatment and/or transfer or admission.
CONCLUSION: This national analysis identifies priority concerns and questions whether it is possible to develop strong system interventions to ensure safety and quality in ACP without significant improvement in human-dependent issues in social programmes such as ACP. Human-dependent issues (ie, varying patient, carer and professional understanding, and confidence in enacting prior ACP when required) should be explored in local contexts alongside systems development for ACP documentation.
The management of cancer-associated thrombosis (CAT) is largely informed by data from adequately powered randomised control trials. However, their exclusion criteria have invariably rendered the study populations unrepresentative of those seen day-to-day by palliative care practitioners. Recent observational data has given insights into the unique challenges of CAT management within the palliative care setting including the natural history of thrombosis in advanced cancer and end-of-life decision making around anticoagulation. Despite developments and some on-going uncertainties, one constant remains; the patient and their experiences. We should, wherever possible, involve them in the decision-making process particularly where the evidence is lacking. By appreciating the values and concerns of our patients, we shall be able to plan care that most meets their needs.
Recruitment challenges to clinical research studies in palliative care settings, particularly in hospices, are well documented. However, a recent study (Hospice Inpatient Deep vein thrombosis Detection (HIDDen) study) performed across five hospices in the UK recruited above target and on time. We describe strategies that aided successful recruitment in this study, and the lessons learnt for improving future studies. A recent review suggested that the 'Social Marketing Mix Framework' (SMMF) could help researchers with recruitment strategies in palliative care. We describe the recruiting strategies employed through the Social Marketing Mix lens and consider if it would be a useful framework for future researchers to use at the planning stage. Successful recruitment strategies employed in HIDDen study included: (i) addressing particular study-related factors, (ii) ensuring all patients were screened and offered participation if eligible, (iii) reducing impact on the clinical team through dedicated research nurses at sites, (iv) addressing research team issues with cross-cover between sites, where geographically possible, and (v) regular video conferencing meetings for support and collaborative solving of challenges. Limited pre-existing research infrastructure at most of the recruiting hospices created particular challenges. The SMMF provides a potential structure to help researchers to plan recruitment. However, to fully streamline trial set up and in order for hospice involvement in research to be realised systematically, a centralised approach to governance, organisational culture change whereby hospices embrace research as a legitimate purpose and consistent access to research staff are identified as key strategic elements promoting recruitment to studies in hospices.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
BACKGROUND: Advance care planning (ACP) is a process where patients express their wishes regarding their future healthcare. Its importance has been increasingly recognised in the past decade. As increasing numbers of elderly people are living in care homes, the aim of this review was to identify the most effective ACP interventions to train/educate all levels of healthcare professionals working in care homes.
DESIGN: A systematic review. Two independent reviewers undertook screening, data extraction and quality assessment.
DATA SOURCES: Searched from inception to June 2018: Ovid Medline, Ovid Medline in process, Ovid Embase, Cochrane Central Register of Controlled Trials, EBSCO Cinahl and Ovid PsycINFO.
RESULTS: Six studies were included: three before and after studies, one cluster randomised controlled trial (RCT), one non-blinded RCT and one qualitative study. Five studies reported on ACP documentation, three on impact on ACP practice and three studies on healthcare-related outcomes. All quantitative studies reported an improvement in outcomes. In the three studies reporting on health-related outcomes, one showed significant reductions in hospitalisation rate, days and healthcare costs; one reported significant reductions in hospital deaths; and the third showed reductions in hospital days and deaths. A meta-analysis could not be performed due to the heterogeneity of the outcome measures. The included qualitative study highlighted perceived challenges to implementing an educational programme in the care home setting.
CONCLUSION: There is limited evidence for the effectiveness of ACP training for care home workers. More well-designed studies are needed.
Venous thromboembolism (VTE) is both common and a potential contributor to symptom burden in patients receiving palliative and end-of-life care. Many of the VTE treatment and prophylaxis recommendations are drawn from data of clinical trials assessing conventional VTE and cancer-associated thrombosis that excluded patients receiving specialist palliative or hospice care. In this group, the epidemiology of VTE and associated outcomes, as well as the risks and benefits of treatment in keeping with a palliative approach are of growing clinical and research interest. This narrative review summarizes current knowledge and challenges in the management of thromboembolic disease in palliative care, highlighting the complexity of decisions surrounding VTE treatment and prophylaxis.
BACKGROUND: Patients receiving palliative care are often at increased risk of unsafe care with the out-of-hours setting presenting particular challenges. The identification of improved ways of delivering palliative care outside working hours is a priority area for policymakers.
AIM:: To explore the nature and causes of unsafe care delivered to patients receiving palliative care from primary-care services outside normal working hours.
DESIGN: A mixed-methods cross-sectional analysis of patient safety incident reports from the National Reporting and Learning System. We characterised reports, identified by keyword searches, using codes to describe what happened, underlying causes, harm outcome, and severity. Exploratory descriptive and thematic analyses identified factors underpinning unsafe care.
SETTING/PARTICIPANTS:: A total of 1072 patient safety incident reports involving patients receiving sub-optimal palliative care via the out-of-hours primary-care services.
RESULTS: Incidents included issues with: medications (n = 613); access to timely care (n = 123); information transfer (n = 102), and/or non-medication-related treatment such as pressure ulcer relief or catheter care (n = 102). Almost two-thirds of reports (n = 695) described harm with outcomes such as increased pain, emotional, and psychological distress featuring highly. Commonly identified contributory factors to these incidents were a failure to follow protocol (n = 282), lack of skills/confidence of staff (n = 156), and patients requiring medication delivered via a syringe driver (n = 80).
CONCLUSION: Healthcare systems with primary-care-led models of delivery must examine their practices to determine the prevalence of such safety issues (communication between providers; knowledge of commonly used, and access to, medications and equipment) and utilise improvement methods to achieve improvements in care.
Palliative medicine is a speciality aimed at controlling symptoms for patients with life-limiting illnesses. Palliative medicine is not just for people who are dying; rather it is a component of care for patients with a life-limiting illness. It manages symptoms in a holistic manner addressing a patient's physical, psychological, social and spiritual needs. This article gives an overview of the principles of palliative medicine and guidance on management of frequently seen symptoms, emergencies and end of life care.
Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky's Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one's illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This article considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services.
INTRODUCTION: Given the particularity of spirituality in the Indian context, models and tools for spiritual care that have been developed in Western countries may not be applicable to Indian palliative care patients. Therefore, we intended to describe the most common signs of spiritual distress in Indian palliative care patients, assess differences between male and female participants, and formulate contextually appropriate recommendations for spiritual care based on this data.
METHODS: Data from 300 adult cancer patients who had completed a questionnaire with 36 spirituality items were analyzed. We calculated frequencies and percentages, and we compared responses of male and female participants using Chi-squared tests.
RESULTS: Most participants believed in God or a higher power who somehow supports them. Signs of potential spiritual distress were evident in the participants' strong agreement with existential explanations of suffering that directly or indirectly put the blame for the illness on the patient, the persistence of the "Why me?" question, and feelings of unfairness and anger. Women were more likely to consider illness their fate, be worried about the future of their children or spouse and be angry about what was happening to them. They were less likely than men to blame themselves for their illness. The observations on spirituality enabled us to formulate recommendations for spiritual history taking in Indian palliative care.
CONCLUSION: Our recommendations may help clinicians to provide appropriate spiritual care based on the latest evidence on spirituality in Indian palliative care. Unfortunately, this evidence is limited and more research is required.
Introduction: Patient-centred care is essential to the delivery of healthcare; however, this necessitates direct patient involvement in clinical decision-making and can be challenging for patients diagnosed with advanced non-small cell lung cancer where there may be misunderstanding of the extent of disease, prognosis and aims of treatment. In this context, decisions are complex and there is a need to balance the risks and benefits, including treatment with palliative intent. The aim of the PACT study is to identify the information and decision support needs of patients, leading to the development of an intervention to support patients with advanced lung cancer when considering treatment options.
Methods and analysis: PACT is a five-stage, multimethod and multicentre study. Participants: Patients and health professionals will be recruited from three health boards. Methods: Non-participant observation of multidisciplinary team meetings (n=12) will be used to determine patients' allocation to treatment pathways (stage I). Non-participant observation of patient-clinician consultations (n=20-30) will be used to explore communication of treatment options and decision-making. Extent of participation in decision-making will be assessed using the Observing Patient Involvement in Shared Decision-Making tool. Interviews with patients (stage III) and their clinicians (stage IV) will explore the perception of treatment options and involvement in decision-making. Based on stages I-IV, an expert consensus meeting will finalise the content and format of the intervention. Cognitive interviews with patients will then determine the face validity of the intervention (stage V). Analysis: analysis will be according to data type and research question and will include mediated discourse analysis, thematic analysis, framework analysis and interpretative phenomenological analysis.
Ethics and dissemination: Ethical approval has been granted. The study findings will contribute to and promote shared and informed decision-making in the best interest of patients and prudent healthcare. We therefore aim to disseminate results via relevant respiratory, oncology and palliative care journals and conferences.
Ce cas clinique décrit la prise en charge urgentiste d'une patiente dans un service de soins palliatifs, suite à la survenue d'une complication mettant en jeu son pronostic vital. Il situe la démarche palliative entre ses deux rôles éthiques : ne pas prolonger ni abréger la vie.