Sage Palliative Medicine & Chronic Care

This episode features Dr Dominika Lisiecka (Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Institute of Technology Tralee, Tralee, Ireland). Amyotrophic lateral sclerosis causes multiple neurodegenerative symptoms including dysphagia, which impacts on person’s ability to eat and drink in a safe way and can contribute to chest infections, pneumonia and death. Family caregivers play an important role in managing a person with amyotrophic lateral sclerosis, but little is known about how dysphagia impacts on their own lives. Managing progressive dysphagia can be a huge challenge for caregivers of people with amyotrophic lateral sclerosis and can lead to multiple psycho-social consequences. Caregivers may be extremely concerned about the safety of a person with amyotrophic lateral sclerosis during meals and fearful of choking. Dysphagia transforms caregivers’ perception of food. The caregivers’ approach to dysphagia may depend on the duration of caregiving and the caregiver’

This episode features Kerry Micklewright and Dr Morag Farquhar (School of Health Sciences, University of East Anglia, Norwich, UK). Informal carers play a vital role in supporting patients with chronic obstructive pulmonary disease (COPD). COPD carers may have unidentified support needs that could be a target for intervention by clinicians. The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based tool to enable identification of carer support needs. Initially developed mainly with carers of patients with end-stage cancer,  it is unclear if it encompasses all the potential support needs of COPD carers. Knowledge relating to COPD carer support needs from published literature was synthesised, including needs carers felt were met, needs carers felt were unmet and supportive inputs carers considered helpful. The identified support needs were then mapped to the CSNAT, and this exercise suggested that the addition of a question encompassing relationship management issues may be required to make CSNAT m

This episode features Minna Hökkä (Research Unit of Nursing Science and Health Management, Medical Department, Oulu University, Oulu, Finland). Palliative care is provided across a wide range of healthcare settings, from tertiary hospitals to primary care. It has been recognized that palliative care services should be delivered in at least two or three levels (i.e., palliative care approach, generalist palliative care, specialist palliative care). All healthcare professionals should have the appropriate education and competencies to provide high-quality palliative care. Nurses have an important role in the provision of palliative care in all levels. This systematic integrative review is the first to focus on empirical studies defining the core competencies of palliative care nursing aligned with the different levels of palliative care provision. The results show that both the distinct levels of palliative care provision and corresponding palliative care nursing competencies are rarely defined. Rather than d

This episode features Rebecca Anderson (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK). Honest prognostic communication with families of patients in the final hours and days of life is important for enabling a good death and for families’ preparedness for that death. Prognostic uncertainty makes this communication challenging for clinicians and families. Clinicians provided what we term ‘absolute categorical time estimates’ (suggesting a prognosis of ‘hours’ or ‘days’) and explained how that prognosis was reached, allowing them to reduce prognostic uncertainty without committing to an overly specific timescale. When requesting prognostic information, relatives helped to relieve the burden of uncertainty for clinicians by alluding to their awareness that prognostication is a subjective judgement. Clinicians and relatives could be direct about prognosis without explicitly referring to ‘death’ and ‘dying’, as references to time were understood by

This episode features Dr Emily Harrop (Marie Curie Research Centre, Division of Population Medicine, Cardiff University, Cardiff, UK). The support needs of people experiencing bereavement vary significantly. Bereavement support in palliative care involves different types and levels of provision to accommodate these needs. Specialist grief therapy is known to be effective for those with high-level risk and needs. Bereavement interventions were wide ranging and included bereavement support and social groups, psychological and counselling interventions and other types of support such as arts-based, befriending and relaxation interventions. Good quality randomised controlled trial evidence was only available for targeted family therapy and a non-targeted group–based therapy intervention, both of which were introduced during the caregiving period and found to be partially effective. The synthesis of qualitative evidence identified three core impacts which were common across interventions: ‘loss and grief resolutio

This episode features Professor Catherine Walshe (International Observatory on End of Life Care, Lancaster University, UK).  Publication bias is known, but usually associated with direction of research findings. Bibliographic analysis of databases shows publication rates differ between countries, and an increase in total number of publications over time. No journal focused analysis has yet been undertaken to understand their role in the geographical dissemination of knowledge. Papers in highest ranked palliative care journals are typically cited between 1-9 times in the time period used to calculate an annual impact factor, with some journals having high numbers of uncited papers. Most authors in the highest ranked palliative care journals come from North American (54.18%) or European (27.94%) institutions. Preliminary sensitivity tests show that the odds of an author being from a North American institution increase 16.4 times if the journal is North American, and of being from a European institution 14.0 tim

The palliative care needs of infants, children and young people differ to those of adults. The broad spectrum of paediatric life-limiting or life-threatening conditions mean that symptoms are varied and complex to manage. The UK National Institute for Health and Care Excellence (NICE) has emphasised pain management in paediatric palliative care as a research priority. This is the first systematic review and meta-analysis to investigate and report on the barriers and facilitators experienced by carers and healthcare professionals when managing paediatric symptoms at end of life. Healthcare professionals’ attitudes, treatment and its side effects, place of care and families’ own symptom management strategies all impact on family caregivers’ ability to manage symptoms. Barriers and facilitators to symptom management for healthcare professionals include medicine access, treatment efficacy and side effects, specialist support, training and education, health services delivery and home care.

This episode features Emel Yorganci (Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, UK).  Usual care provided to patients is rarely described in detail in randomised controlled trials (RCTs) of a complex intervention in palliative care. To interpret the effectiveness of interventions tested within RCTs, the care provided in the comparison arm must be described. Approaches including the use of open-ended questions and observations have been used in trials to understand care provided but lack convergent validity. Usual care provided in an RCT was characterised using a multi-method approach at different time points and from different professional perspectives. Similarities and variations in the care provided to patients within and across study sites and over time were identified refuting the assumption that all control participants received the same usual care. This paper provides a method for the classification of the usual care that should be embedded within RCTs of complex

This episode features Kim de Nooijer and Sophie van Dongen (Erasmus University Medical Center, Rotterdam, Netherlands).   Self-management has predominantly been studied in the context of chronic diseases, where it has been defined as ‘the ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with the condition’. Patients with advanced cancer experience severe, multidimensional symptoms and challenges and are increasingly expected to actively manage their health and care. There still is a lack of insight into the full range of self-management experiences of patients with advanced cancer and the attitudes of relatives and healthcare professionals towards self-management of these patients. This study demonstrates that self-management strategies of patients with advanced cancer span many domains: medicine and pharmacology, lifestyle, psychology, social support, knowledge and information, navigation and coordination and medical decision-making. 

This episode features Dr Catriona Mayland (University of Sheffield, UK).  Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services. This prospective cohort study recruited 5402 people with a new diagnosis of head and neck cancer from 76 UK cancer centres over 3 years.  In summary, the results show that in addition to those with incurable head and neck cancer, there is a small but significant ‘curative’ subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.

This episode features Dr Deokhee Yi (Cicely Saunders Institute of Palliative Care, King's College London). Large variation exists in the health service use near the end of life and a 10% of patients are especially high-cost users. A high proportion of care costs in the last year of life occur in the last 3 months. Patients nearing the end of life often prefer to be cared for at home, but habitually spend much time in hospital. Our samples are from older patients with higher risks and more complex needs, having had contacts with specialist palliative care services in three countries where palliative care services are established and integrated into the health care system. In the last 3 months of life, more than 80% of the total health and social costs were attributable to hospital care and the costs of palliative care were only ~10%, despite the fact that all patients had accessed specialist palliative care and reported high satisfaction with these services. Uniquely, the authors were able to compare actual co

This episode features Danni Collingridge Moore (International Observatory on End of Life Care, Lancaster University, Lancaster, UK). The provision and quality of palliative care delivered in long-term care facilities (LTCFs) varies and does not always meet the needs of the residents. Interventions to improve palliative care have been shown to lead to improvements in the quality of care received by long-term care facilities residents. The implementation of such interventions and the factors that facilitate their uptake within an long-term care facilities are not well understood. This paper provides a scoping review of implementation strategies used by palliative care interventions in long-term care facilities. This review has identified four organizational strategies for the implementation of palliative care interventions: facilitation, education/training, internal engagement and external engagement. Three developmental stages comprise the implementation process: conditions to introduce the intervention, embed

This episode features Dr Bridget Candy and Dr Megan Armstrong (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK). Aromatherapy, massage and reflexology are widely used in palliative care. Patients themselves often report that these therapies are helpful. It is important to demonstrate value for money in health care service provision including in palliative care. This is the first systematic review to focus on aromatherapy, massage and reflexology in palliative care and to synthesise the evidence using established systematic review methodology. Low-quality trials, and differences in the nature of the comparison arms and in the type of evaluation between trials made it difficult to draw any firm conclusions about the effectiveness of these therapies. Although there was limited evidence on the effectiveness of aromatherapy, massage and reflexology equally no evidence of harm was reported. Heterogeneity across the body of trials suggests the need for t

This episode features Dr Nicola White  and Dr Linda Oostendorp (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK). Recognising dying is a core clinical skill. There is inconsistent training in the United Kingdom and both medical students and doctors report feeling unsure and ill prepared when working with a dying patient and their family. This study suggests that the online training resource can alter what information medical students review, to make decisions more like that of the experts. This online training resource could be used to facilitate learning in this complex area, and provide a complementary education approach to clinical training.

This episode features Brett Scholz (Medical School, The Australian National University, Acton, ACT, Australia).  Consumer involvement is required by policy at all levels of health services. Some health disciplines have well-established research programmes focusing on consumer leadership. Palliative care is philosophically consumer-centred, but there has been less of a focus on consumer leadership at the systemic level of palliative care services. The review demonstrates that consumer leadership is an emerging practice in palliative care services and academia. Despite the potential challenges of consumer leadership, consumers are motivated to be engaged with the sector. Consumers are still not as involved in setting agendas in palliative care as policies require. The review findings extend understandings of how to better support consumer leaders, suggesting palliative care service providers educated by consumer academics may be more aware of power imbalances and thus later be able to use their influence for fu

This episode features Mary Scott (Ottowa Hospital Research Institute. Bruyere Research Institute). Many patients and families report improved satisfaction of care when palliative care when they are supported by palliative care specialist teams. Transitions of care from one setting to another are burdensome. Evidence suggests that palliative care can improve this transition from hospital to community support. This narrative systematic review aimed to determine whether paliative care can impact that transition from hospital to home. Fifteen articles were included. Involvement of specialist inpatient palliative care was associated with lower readmission rates, higher referral to hospice and better provision of services after discharge. Heterogenity of study designs were evident. Consequently, futher research is needed to evaluate this area further.   Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319870649 If you would like to record a podcast about your published (or accepted)

This episode features Dr Amara Nwosu (Palliative Care Institute Liverpool and Marie Curie Hospice Liverpool, Liverpool, UK).  Medical robots have mainly been used to support surgical procedures and for a variety of assistive uses in dementia and elderly care. There has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care. The potential opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. There is concern that robots will exacerbate healthcare inequalities, disrupt the workforce and reduce face-to-face human interaction. Future work should evaluate the health-related, economic, societal and ethical implications of using robotic technology in palliative, supportive and end-of-life care. There is a need for collaborative research to establish use-cases and policy recommendations to guide the appropriate use of robots for people with seri

This episode features André Filipe Ribeiro (Universidade do Porto, Porto, Portugal). The number of patients with morbidities and other complex injuries due to burns has grown over the years. This kind of burn injuries can have a high impact in the physical and psychological health, cause social transformations and changes in role functioning. Palliative care is an active and global specialty of care that can take prominence as a strengthening component of integrated treatment. This systematic review offers a comprehensive overview about the potential benefits of integrating palliative care in burn intensive care units. The integration of palliative care in burn intensive care units can improve patients’ comfort, decision-making processes, and family care. This systematic review can raise awareness about the potential of integrating palliative care in burn intensive care units to both policy makers and healthcare professionals. This review highlights the need for further research in order to develop a better u

This episode features Rebecca Anderson (Marie Curie Palliative Care Research Department,  University College London, London, UK).  Poor communication from healthcare professionals is a common complaint from relatives of patients at the end-of-life. Communication with relatives at this time is important for high quality end-of-life care and for relatives’ long-term well-being. Common communication strategies are identified including highlighting the patient’s deterioration to aid decision-making, references to patient wishes, providing relatives with options, tailoring information to individuals and using pacing and staging of information. Healthcare professionals state a belief in using honest, direct language and involving families in decision-making, but there is variation in the extent to which this is implemented in practice. Nurses and allied healthcare professionals play an important role in providing individualized communication with relatives. There is a need for more research on communication with re