Sage Palliative Medicine & Chronic Care

This episode features  Jo-Anne J. Kelly  (Palliative Care South East, Narre Warren, VIC, Australia (Palliative Care South East, Narre Warren, VIC, Australia) and Dr Karen Aisling Griffin (Palliative Care South East, Narre Warren, VIC, Australia, Peninsula Health, Frankston, VIC, Australia)   What is already known about this topic? Phenobarbital loading in the adult palliative cohort for refractory symptom management has been used for many years. However, there is little evidence, nor a guideline for palliative sedation for children at home.   What does this paper add? An initial loading dose of phenobarbital may provide enhanced and quicker relief of refractory symptoms in the paediatric palliative care cohort receiving home-based terminal care.   Implications for practice, theory, or policy? Further research is required to determine the efficacy of, and guidelines for administration of, a loading dose of phenobarbital for paediatric palliative care patients in the terminal phase, presenting with intr

This episode features Isabel S. van der Meer (Department of Research and Development, The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands).   What was already known? The diagnosis of advanced cancer and subsequent treatments can have negative implications for sexual health Changes in sexual health of patients with advanced cancer emerge from physical, mental and emotional transformations, but the importance of sexual health remains relatively unchanged. The majority of healthcare professionals find it challenging to discuss sexual health in the context of palliative care.   What this paper adds? Patients and their partner remain relatively stable in most aspects of sexual health in the last 18 months of the patients' life. Patients' sexual desire significantly decreases in their last 18 months of life. Patients with worse physical functioning and/or prostate cancer reported a greater decline in most aspects of sexual health. Patients' sexual desire, activity and satisfaction

This episode features Lily Man Lee Chan (School of Nursing, Li Ka Shing Faculty of Medicine, The University of Hong Kong, Hong Kong SAR).   What is already known about the topic?   Progressive neurologic diseases involve complex, fluctuating symptoms and function decline. Palliative care aims to improve quality of life and symptom control. Access to palliative services is often limited to advanced disease stages or based on prognosis. Palliative care needs among people with progressive neurological diseases are understudied in Asian contexts.   What this paper adds? People with progressive neurological diseases experience significant palliative care needs related to physical, psychosocial, and spiritual concerns from the early stages of illness, highlighting the necessity of early palliative care based on individual needs rather than prognosis. Patients with progressive neurological diseases navigated complex psychospiritual distress, transitioning from negativity to life renegotiation by fostering a

This episode features  Jo-Anne J. Kelly  (Palliative Care South East, Narre Warren, VIC, Australia (Palliative Care South East, Narre Warren, VIC, Australia) and Dr Karen Aisling Griffin (Palliative Care South East, Narre Warren, VIC, Australia, Peninsula Health, Frankston, VIC, Australia)   What is already known about this topic? Phenobarbital loading in the adult palliative cohort for refractory symptom management has been used for many years. However, there is little evidence, nor a guideline for palliative sedation for children at home.   What does this paper add? An initial loading dose of phenobarbital may provide enhanced and quicker relief of refractory symptoms in the paediatric palliative care cohort receiving home-based terminal care.   Implications for practice, theory, or policy? Further research is required to determine the efficacy of, and guidelines for administration of, a loading dose of phenobarbital for paediatric palliative care patients in the terminal phase, presenting with intr

This episode features Professor Nancy Preston (International Observatory on End of Life Care, Lancaster University, Lancaster, UK) and Professor James Downar (Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, ON, Canada)   This podcast summarises a editorial which describes the critical intersection of palliative care and assisted dying where legalization has occurred. The authors address how palliative providers are likely to encounter requests for assisted dying, as currently 75–90% of requests come from people who are being treated by palliative care providers or who are admitted to palliative care facilities. The episode challenges the argument for separating these practices, suggesting that integration better supports patient values. It also explores the emotional impact on healthcare workers and the spectrum of their involvement.    Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251365440   If you would like to record a podcast about you

This episode features Professor Sheila Payne (International Observatory on End of Life Care, Health Innovation One, Lancaster University, Lancaster, UK).   What is already known about the topic? Advance care planning is considered good practice in palliative and end of life care and is promoted in health policy. There is no standardised approach to advance care planning in practice. There is recent debate about the utility and effectiveness of advance care planning in palliative care contexts.   What this paper adds Most patients did not recognise the concept of advance care planning and did not welcome conversations with health care providers about future planning despite many participants having done this prior to interview. Patients with treatable but not curable cancer live with uncertainty of prognosis in the context of ongoing and new treatment options, making advance care planning problematic. Most patients preferred to discuss future care, social and funeral arrangements within families, if a

This episode features Dr Heidi Merrington (School of Public Health, The University of Technology Sydney, Sydney, NSW, Australia) and Professor Angela Dawson (School of Public Health, The University of Technology Sydney, Sydney, NSW, Australia).   What is already known about the topic? In high-income countries, refugees experience barriers to accessing health care that may delay palliative care seeking. Refugees’ cultural backgrounds and experiences of trauma, loss and grief during forced displacement shape health, wellbeing and expectations of care. Evidence is needed to inform palliative care services and approaches to supporting resettled refugees and their families.   What this paper adds This review demonstrates the dearth of research focused on resettled refugees living with advanced life-limiting illness and their families in high-income countries. The review highlighted the importance of assets such as resilience, sense of identity and belonging, community connections, social support and social

This episode features Jing-Da Pan (Department of Oncology, The Second Affiliated Hospital, Guangzhou Medical University, Guangzhou, Guangdong Province, China School of Nursing, Guangzhou Medical University, Guangzhou, Guangdong Province, China)   What is already known about the topic? Family members are crucial in advance care planning for patients with life-limiting illnesses, particularly in Asia, where cultural values stress family-centeredness and paternalism. No study so far has attempted to systematically synthesize this information within the Asian context and there is a lack of a model to describe Asian family members’ involvement in advance care planning.   What this paper adds? Asian family members are willing to participate in advance care planning but face difficulties in translating this willingness into action. Barriers include inadequate legislation, insufficient public education, and influences from Confucianism or traditional beliefs. A culturally sensitive model with six dimensions w

This episode features Victoria Ali  (Lancaster University, Lancaster, UK. Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK)   What is already known about the topic? Nurses deliver care for patients and those important to them across acts that may intentionally or potentially hasten death, navigating this care within the boundaries of healthcare systems and professional regulation. The increase in permissive legislation relating to assisted dying is challenging healthcare professionals to consider how an assisted death sits alongside accepted or ‘traditional’ healthcare practices at the end of life. Providing care in these situations can be challenging and requires emotional labour to navigate.   What this paper adds? This review allows recognition of how the emotional labour involved in providing care, and its subsequent impact, is often better recognised within assisted dying than for other acts that may be perceived as death hastening. The ‘normalising’ of care, and consequently dying,

This episode features Moyke Versluis (Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, The Netherlands Graduate school of Social and behavioral sciences, Tilburg University, Tilburg, The Netherlands).   What is already known about the topic? Patients who are aware of their limited prognosis are more likely to be actively involved in advance care planning. Many patients with advanced cancer are unaware of their limited prognosis.   What this paper adds? More patients with advanced cancer become aware of their limited prognosis during their last year of life. Some patients do not want to know their prognosis, and their wish to not know their prognosis is persistent during their last year of life.   Implications for practice, theory, or policy It is important for physicians to recognise that the patients’ perception of prognosis may change as the disease progresses and to invite patients to discuss their needs and wishes regularly. Although some patients may pre

This episode features Dr Madhurangi Perera (Cancer and Palliative Care Outcomes Centre, School of Nursing and  Australia Centre for Healthcare Transformation, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia)   What is already known about the topic? Providing palliative and supportive care in the home setting for people with heart failure is advantageous because care can be provided in accordance with an individual’s way of life. Home-based palliative and supportive care for people with heart failure has the potential to improve person and caregiver outcomes and reduce healthcare costs.   What this paper adds? The components of home-based palliative and supportive care are symptom management; expert communication; multidisciplinary team involvement; continuity of care; education; end-of-life discussions; and caregiver support. While initiation of care, the services provided in the home-setting and health care approaches provided differed across the reported studies, in a

This episode features Amy Brown (Marie Curie Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK. Swansea University Medical School, Swansea University, Swansea, UK)   What is already known about the topic? The third World Health Organization Global Patient Safety Challenge ‘Medication without harm’, emphasises the need for improved infrastructure through better reporting practices and cross-organisational learning from adverse events and near misses. Medication is implicated in one-fifth of serious palliative care patient safety incidents, with approximately 25% of these incidents involving continuous subcutaneous infusions. Inadequate analysis of continuous subcutaneous infusions as safety-critical, risk-prone interventions dependent on complex structural and human factor issues is a lost opportunity for learning.     What this paper adds? Continuous subcutaneous infusion incidents occur across all settings including the home, hospices and hospitals a

  This episode features  Dr Masanori Mori (Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan)   What is already known about the topic? As in Western countries’ health-care systems, advance care planning is being increasingly implemented in Asian ones, but consensus on its definition and recommendations based on Asian culture are lacking. In high-context, Confucian-influenced Asian societies, explicit conversations about end-of-life care with patients are not always the norm. Family involvement is crucial in decision-making. Health-care providers in Asia uncommonly involve patients in advance care planning, partly due to their lack of knowledge and skills in advance care planning, personal uneasiness, fear of conflicts with families and their legal consequences, and the lack of a standard system for advance care planning.   What this paper adds? A key domain not previously highlighted in Western Delphi studies is “a person-centered and family-based approach”

This episode features Professor Raymond Voltz (Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany; Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany; Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany)   What is already known about the topic? The wish to hasten death is frequent in patients with serious illness and can associated with immense burden, potentially leading to suicidality or a wish for assisted suicide. Many patients retain their will to live throughout their entire illness trajectory, even in palliative stages and at the end of life. In some studies, both phenomena are found to be negatively correlated, yet simultaneous expressions of both a high wish to hasten death and a high will to live are possible.   What this paper adds? We confirm the

This episode features Jodie Crooks (Marie Curie, London, UK) and Dr Briony Hudson (Marie Curie, London, UK; Marie Curie Palliative Care Research Department, University College London, London, UK).   What is already known about the topic? Research into palliative care for people experiencing homelessness is complex and requires input from people with lived experience. There is a dearth of evidence and/or guidance in how to support researchers to involve people with lived experience of homelessness in palliative care research.   What this paper adds? Co-production of palliative and end-of-life-care research with people with lived experience of homelessness needs to be transparent, prioritise building rapport, be trauma-informed and person-centred. Reimbursement should always be offered to co-producers. The method of reimbursement should consider the context of involvement (i.e. the individual’s circumstances) where possible. There is a need to evidence the impact of involvement, to facilitate a change i

This episode features Suning Mao (State Key Laboratory of Oral Diseases & National Center for Stomatology & National Clinical Research Center for Oral Diseases, West China Hospital of Stomatology, Sichuan University, Chengdu, China)   What is already known about the topic? Home-based palliative care has grown in popularity, but challenges in coordinating care and communication between hospital and home settings can impact transitions, healthcare consumption, care quality, and patient safety. Electronic symptom monitoring systems in home-based palliative care utilize telemedicine to remotely collect real-time symptom data, offering flexible feedback to patients and healthcare providers during clinical consultations.   What this paper adds? Most patients positively engage in electronic symptom monitoring, potentially enhancing quality of life, physical and emotional well-being, and symptom scores without significant cost increase. Definitive conclusions regarding the impact of electronic symptom

This episode features Professor Scott Murray (Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK).   We are delighted with this special edition, and that Palliative Medicine has turned its focus on this important topic. Primary Palliative Care, delivering palliative care by trained primary care professionals can help meet the outstanding challenge of bringing  accessible palliative care to everyone with a life-threatening illness.    This special edition features a number of new studies highlighting the great potential to deliver palliative care in primary care. It includes articles about how palliative care is integrated in higher and lower income countries, including refugee settings. It reports new education and service models for general practitioners and paramedics, and the use of electronic symptom monitoring. Also two studies explore that “less may be more” at the end of life - a review of hospital admissions and influencing deprescribing in the last ph

This episode features Professor Scott Murray (Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK).   We are delighted with this special edition, and that Palliative Medicine has turned its focus on this important topic. Primary Palliative Care, delivering palliative care by trained primary care professionals can help meet the outstanding challenge of bringing  accessible palliative care to everyone with a life-threatening illness.    This special edition features a number of new studies highlighting the great potential to deliver palliative care in primary care. It includes articles about how palliative care is integrated in higher and lower income countries, including refugee settings. It reports new education and service models for general practitioners and paramedics, and the use of electronic symptom monitoring. Also two studies explore that “less may be more” at the end of life - a review of hospital admissions and influencing deprescribing in the last ph

Primary Palliative Care - onwards and upwards!

This episode features Richard Keagan-Bull (Faculty of Health, Science, Social Care and Education, School of Nursing, Allied and Public Health, Kingston University London, London, UK).   What is already known about the topic? Deaths of people with intellectual disabilities are often unanticipated, unplanned for and poorly managed. Service providers in residential settings are at the forefront of supporting people with intellectual disabilities at the end-of-life, but staff lack skills, knowledge, confidence and support within the area. In order to develop end-of-life care planning interventions that are welcomed by people with intellectual disabilities, their families and support staff, it is important to understand their perspectives, preferences and needs for end-of-life care planning.   What this paper adds? Participant perspectives provided a detailed view of end-of-life care planning involving four areas ([i] funeral planning, [ii] illness planning, [iii] life planning and [iv] talking about dying)