This episode features Dr Bridget Candy (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK).
A systematic review of effectiveness data on aromatherapy, massage and reflexology in palliative care drew inconclusive conclusions. A systematic review of qualitative evidences shows palliative care patients highly value complementary therapy.
None of the aromatherapy, massage or reflexology trials included all key delivery components as outlined by palliative care patients. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. This novel but simple method of integrating synthesised qualitative and quantitative reviews through matrices allows the reasons for inconclusive trial evidence to be explored.
This synthesis has highlighted a need for fully powered, robust trials of aromatherapy, massage and reflexology that are conducted with the key components described by people with palliative care needs. Outcome measures should be appropriate to capture the range of potential benefits highlighted by people with palliative needs. In the meantime, complementary therapies should continue to be offered as part of palliative care.
This episode features Dr Katie Ekberg (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia) and Dr Anthony Herbert (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia).
The urgency of caring for children with complex and serious conditions ensures that care must continue during the Coronavirus Disease 2019 (COVID-19) pandemic.
As yet, guidelines for communication with families about the COVID-19 pandemic are not based on direct observational evidence of actual communication practices within palliative care during the pandemic. The current study provides evidence of the pervasive relevance of communication about the COVID-19 pandemic during clinician-family paediatric palliative care consultations.There was a pervasive relevance of serious and non-serious talk about the pandemic.
Topics typical of standard paediatric palliative care consultations often led to discussion of the pandemic, including medical discussions and psychosocial and lifestyle discussions.Clinicians (55%) and parents (45%) initiated talk about the pandemic.
Clinicians should expect and be prepared for the pervasiveness of talk about the COVID-19 pandemic within standard paediatric palliative care consultations, so that they can be flexible in how they respond to families.
Future guidelines should consider the pervasive and varied ways that conversations about a pandemic are raised within and across routine consultations.
This episode features Dr Yakubu Salifu (International Observatory on End of Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK).
Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.
The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.
Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care.
In resource-poor contexts, there are significant challenges associated with home caregiver support. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
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’s relationship with the person with amyotrophic lateral sclerosis.
Caregivers of people with amyotrophic lateral sclerosis need support from professionals to manage dysphagia at home. In particular, advice should be provided in relation to managing adverse episodes, such as choking at home. Professionals delivering services for dysphagia should find ways to recognise and address the needs of the caregivers of people with amyotrophic lateral sclerosis rather than focusing on the person with amyotrophic lateral sclerosis alone.
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 more comprehensive for COPD carers.
Many of the support needs of COPD carers are unmet: particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. COPD carers would benefit from a comprehensive, person-centred assessment of their needs and appropriate response to these needs by clinicians. The CSNAT is a promising approach to identifying COPD carer support needs, though it may require an additional question on relationship management to ensure it fully encompasses the potential needs of this group.
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 describing which core nursing competencies are the most related to each level of palliative care, previous research has concentrated on identifying the diverse competencies necessary for different specific settings and how they can be categorized in different aspects of nursing (e.g., competencies related to patient–nurse relationship).
Nurses with a specialized or advanced nurse practitioner role in palliative care have extended clinical competencies, which include the ability to provide informal education and guidance to colleagues.
Nursing competencies in palliative care, especially the ones that are more relevant to each level of palliative care provision, should be better outlined to enhance palliative care development, education and practice.
Further research that addresses how nursing competencies differ across the levels of palliative care provision is needed.
Full paper available from: https://journals.sagepub.com/doi/10.1177/0269216320918798
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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 both parties as referring to prognosis.
This paper identified key practices for communicating prognosis with families of patients at the very end of life, such as explicitly stating the uncertainty while invoking expertise, and using absolute categorical time estimates when providing a prognosis.
These practices could be taught as part of communication training using clips of recordings from real-life interactions.
Full paper available from:
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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 resolution’, ‘sense of mastery and moving ahead’ and ‘social support’.
The qualitative evidence suggests the value of peer support alongside opportunities for reflection, emotional expression and restoration-focused activities for those with moderate-level needs.
These findings suggest the relevance of resilience and public health–based approaches to bereavement care.
Full paper available from:
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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 times increased if the journal is European. Palliative care research publication is clustered geographically, and readers may not be widely exposed to potentially relevant research from other cultures or contexts if they only read journals from their own continents.
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 interventions. Assumptions made about the usual care delivered to patients during intervention development may not always remain valid at the testing stage. Characterising usual care ensures that interpretation of findings of the effectiveness of the tested intervention is more valid.To avoid incorrect interpretations of complex interventions in palliative care, usual care is best characterised using a multi-method approach embedded within the design of RCTs.
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. Patients’ self-management strategies and experiences are highly individual and divergent and may be substitutional, additional and distinctive or conflicting compared to care provided by healthcare professionals. Healthcare professionals perceive self-management as both desirable and achievable if based on sufficient skills and knowledge and solid patient–professional partnerships. Self-management support programmes for patients with advanced cancer can benefit from an individualised approach that re-evaluates patients’ needs and wishes, is embedded in solid partnerships with relatives and healthcare professionals, and is incorporated into existing models of care. Future studies on self-management of patients with advanced cancer need to further examine attitudes of relatives and healthcare professionals and investigate effectiveness and working mechanisms at the levels of patients, communities and healthcare organisations and policy.
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 costs, based on utilization, therefore providing a more robust comparison between countries with different reimbursement systems. Cost distributions in England were more homogeneous, and with lower mean costs, than in both the United States and Ireland. Financial difficulties and poor experience with home care services were associated with being a high-cost patient, but having cancer or non-cancer, or having multimorbidity was not.
Implications for practice, theory or policy. Increasing community palliative care services may help older patients at the end of life avoid unwanted hospital care and increase care quality, value and access, and it should be a policy priority. People with poverty, increased age and receiving poor home care should be a target for future interventions to improve care at the end of life. The lower and more homogeneous costs in England require investigation, including the effects of different payment/reimbursement systems for health care.
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, embedding the intervention within day-to-day practice and sustaining ongoing change. The implementation strategies used varied across the studies identified; how implementation can support intervention uptake requires. The implementation strategies used to implement palliative care interventions in long-term care facilities are underreported, and separating characteristics of an intervention from the implementation process is complex. Further guidance is needed on the reporting of implementation strategies. The findings of this review may inform the development and implementation of future palliative care interventions in this setting and how they can be implemented more effectively
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 theoretical research to understand more clearly how complementary therapies are delivered in palliative care and the best way to measure any purported benefits.