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