Sage Palliative Medicine & Chronic Care

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 were individually associated with the quality of life in the last 18 months of life.   Implications for practice, theory, policy, or future research? Recognizing sexual health as an integral component of overall quality of life is essential. Discussing sexual health as healthcare professionals is important. Using short PROM's exploring the patient's need to discuss sexual health could facilitate the initiation of such a discussion. Future research is essential to examine whether patients perceive decreased sexual health as a concern and whether the meaning of sex changes at the end-of-life.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251385774   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 acceptance, focusing on the present, and embracing a positive outlook despite ongoing disease progression and future uncertainties. Findings underscore the importance of adopting a person-centered holistic approach that incorporates psychospiritual support, suggesting a symptom-based palliative care approach.   Implications for practice, theory or policy Palliative care services should proactively assess and address the multidimensional needs of people with progressive neurological diseases from diagnosis onward, not only at advanced stages. Health professionals need to integrate psychospiritual care and facilitate timely, open conversations about future care preferences before cognitive decline occurs. Policy and service development should enable needs-based, flexible access to palliative care for people with progressive neurological diseases, and promote education for patients, families, and providers on the benefits of early palliative involvement.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251394908   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 intractable symptoms.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251395457   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 at all.   Implications for practice, theory or policy The principles of future care planning can be introduced early in treatment without making them specifically about planning for the last days of life. Healthcare professionals in cancer and palliative care may need to ensure that future care planning discussions evolve over time, with decisions made being routinely revisited in light of changes in disease progression, treatment options and prognosis. Future policy guidance on advance care planning needs to take account of the changing treatment landscape for those with treatable but not curable cancer.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163251363752   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 capital, for enhancing the wellbeing of refugees and their families during end-of-life care and bereavement. Refugees' cultural identity, death literacy and experiences of grief influence engagement with palliative care staff and decision-making about end-of-life care approaches.   Implications for practice, theory or policy Community networks play an important role in end-of-life care and bereavement support for refugees and their families. Participation of diverse groups of refugees in co-designed research is needed to build an evidence base to inform palliative care service approaches and develop community-based end-of-life care interventions that strengthen assets that enhance refugee wellbeing. Future studies should focus on refugees as a distinct group compared to migrants and the general population in high-income resettlement countries.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163251338583   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 was developed to illustrate Asian family members' participation in advance care planning.   Implications for practice, theory, or policy Asian governments should enact advance care planning legislation to ascertain its legal status and allocate more relevant resources to educate the public to overcome the barriers to Asian family members' participation in advance care planning. Future efforts in advance care planning in Asia should prioritize developing culturally sensitive models which align the willingness, beliefs, and actions of Asians and the proposed conceptual model should be verified by more advanced statistical tests, thus confirming its validity in different Asian regions. Due to the paradoxical impact of filial piety on advance care planning, a culturally specific intervention is needed to help family members understand that respecting dying patients' decisions is a filial act, ultimately improving their involvement in advance care planning.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251317856   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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, within acts that may be perceived as hastening death limits the recognition of the emotional labour required for nurses to provide care in these circumstances. When supporting a patient through an assisted death, nurses focus on optimising the experience for the patient, whereas in other acts that may hasten death, nurses' primary focus is on the experience of those present with the patient.   Implications for practice, theory, or policy The impact on nurses' emotional well-being due to the expectation to engage in significant emotional labour, in all care that may be perceived as death hastening, should be considered in daily practice, policy and organisational structure. The provision of emotional support should be considered for nurses when involved in the delivery of care that may hasten death, either through intentional acts (an assisted death) or unintended consequence of the care. Normalising care that may be perceived as death-hastening can impact nurses' feelings of agency within care delivery and may need to be considered in jurisdictions with permissive assisted dying legislation as these practices embed within organisations.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163251331162   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 prefer not to know their prognosis, it remains important to respectfully explore their preferences and wishes for end-of-life care.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241301220   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu: a.nwosu@lancaster.ac.uk

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 all included studies, nursing staff were strategically placed to provide a wide range of services in the home-setting. Continuous and early liaison between cardiology, palliative care and primary care providers is needed to provide continuous, non-fragmented care.   Implications for practice, theory, or policy The detailed findings of this review which highlight the components of home-based palliative and supportive care can provide guidance to enable health care providers to tailor care for this population. Future research into the perspectives of people with heart failure on each of the identified components and their implementation will assist service providers to gain a better understanding of how to enable home-based palliative and supportive care for persons with heart failure.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241290350   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk  

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 and particularly after the transfer of patients between settings with harm present in nearly three-quarters of reports. Multiple points of system failure were identified in continuous subcutaneous infusion incident reports including monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%); recurring contributory factors included discontinuity of care within and between care settings, inadequate time, inadequate staffing and unfamiliarity with protocols. Narrative descriptions of psychological and social harm, alongside physical harm risk, are not being adequately recognised or responded to through existing approaches to measure harm in palliative care, hindering learning in practice   Implications for practice, theory, or policy The structural changes needed to minimise harm and maximise safety in palliative care are likely to be replicated in other parts of the world where patient safety reporting practices are less well established, for example, shifting from focussing on lack of experience and competency at an individual practitioner-level to addressing deficits in working environments and infrastructures for care provision. When patients move between care locations, more attention should be given to the timeliness and effective transfer of medication management (e.g. if someone is discharged from hospital to a care home that rarely uses continuous subcutaneous infusions for palliative care, this needs to be preceded by refreshing staff skills and ensuring they can access further community support if needed). Professional training and further research are needed to increase quality of reporting of psychological and social harms (including for families and other stakeholders involved) to facilitate organisational learning and pinpoint precise targets for further improvement.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241287639  If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

  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" that facilitates families' involvement to support an individual's engagement in advance care planning and the attainment of the individual's best interest through shared decision-making. Treatment preferences in Asian contexts are often shaped by relationships and responsibilities toward others, with families and health-care providers supporting individuals to meaningfully participate, even in the presence of physical or cognitive impairments.   Implications for practice, theory, or policy Our definition and recommendations can guide clinical practice, education, research, and policy-making in advance care planning, not only in the Asian sectors included in our study, but also in regions with Asian residents and other areas where implicit communication and family-centered decision-making are valued. Our findings, combined with the existing evidence, will help future investigations to develop culturally sensitive advance care planning interventions, identify appropriate outcomes, and build an infrastructure where Asian individuals receive care consistent with their values, goals, and preferences.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241284088   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk  

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 negative correlation between the wish to hasten death and the will to live over the observation time of 4–6 week after an open conversation in the group analysis. However, there was a substantial number of outliers of this pattern with clinically relevant changes in both phenomen. Three illustrative cases show that factors like patient personality and individual situation influence uncommon trajectories of wish to hasten death and will to live.   Implications for practice, theory, or policy Clinical and research assessment should be aware of the fact that a wish to hasten death does not necessarily imply a low will to live and vice versa, thus both phenomena should be addressed simultaneously and proactively. The application of secondary analysis using an integrative mixed-methods-approach of validated questionnaires and in-depth interviews might be effective to reveal the nature of ambiguous or seemingly paradoxical phenomena such as double awareness of wish to hasten death and will to live. As the double awareness of the wish to hasten death and the will to live is common at the end of life, but can be hard to endure, health professionals should develop an open and accepting attitude to support patients in dealing with it.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241269689   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 in research culture which prioritises hearing the voices of different groups.   Implications for practice, theory, or policy Involving people with lived experience of homelessness can help researchers to identify unknown unknowns within the field of palliative care: it can validate, enhance and direct research to the intricacies of their experiences. The TIFFIN recommendations provide guidance for how to achieve co-production within this field in a trauma informed way.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241259667   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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 monitoring on outcomes such as survival, hospital admissions, length of stays, emergency visits, and adverse events were constrained by substantial variability in reported data or inadequate statistical power.   Implications for practice, theory, or policy Future high-quality randomized controlled trials or large-scale real-world studies on electronic symptom monitoring in home-based palliative care should assess its short-, medium-, and long-term effects on both cancer and non-cancer populations. Employing globally recognized patient-reported outcome scales like the EORTC Core Quality of Life Questionnaire and the 36-item Short Form Health Survey guarantees reliable and generalizable results in accurately assessing symptoms and enabling meta-analysis. Incorporating electronic symptom monitoring into home-based palliative care should prioritize accessibility, feasibility, and patient acceptance, particularly in uncertain clinical scenarios.     Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163241257578?icid=int.sj-abstract.citing-articles.8   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk  

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 phase of life in primary care. Listen to Professor Scott Murray provide more details of the Editorial and details of the articles included in the special edition.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163241271049   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk  

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 phase of life in primary care. Listen to Professor Scott Murray provide more details of the Editorial and details of the articles included in the special edition.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163241271049   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

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); what area participants focused on affected their views on whether, when and with whose input they thought end-of-life care planning should happen. Barriers to end-of-life care planning with people with intellectual disabilities included: reluctance to consider death and dying, with a preference to focus on 'planning for living'; issues around understanding and communication; not knowing how to initiate conversations; dying being an abstract concept; and lack of staff training. Planning for illness (the last phase of life) was particularly abstract and difficult to do in advance.   Implications for practice, theory, or policy The definition of end-of-life care planning may be ambiguous, particularly for non-healthcare professionals. It should be clear what is meant and understood by people when using the term. The development of future interventions, resources and approaches for end-of-life care planning with people with intellectual disabilities should address the need for clarity around what is being planned for. Intellectual disability staff need help and guidance in knowing when and how to initiate the topic of dying and end-of-life care planning; reframing aspects of end-of-life care planning as 'planning for living' rather than 'planning for dying' and collaboration with palliative care professionals may help address barriers.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163241250218   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk

This episode features Sheryn Tan (University of Adelaide, Adelaide, SA, Australia) and Dr Stephen Bacchi (Flinders University, Bedford Park, SA, Australia; Lyell McEwin Hospital, Elizabeth Vale, SA, Australia)   What is already known about the topic? In palliative care patients for whom there is a need for non-oral antiseizure medications, and a preference to avoid intravenous access, options are primarily limited to benzodiazepines. In circumstances where the sedative effects of benzodiazepines are to be avoided, the use of subcutaneous levetiracetam have been reported. There are limited guidelines available regarding the possible use of subcutaneous sodium valproate.   What this paper adds? Several studies have described successful use of subcutaneous sodium valproate in palliative care to manage seizures. While limited, the available data described few adverse effects, aside from an isolated local reaction that is resolved with a change of site. Current routine medication resources may not reflect this potential use of sodium valproate, and palliative care has unique medication considerations that may not apply to medication administration in other settings.   Implications for practice, theory, or policy Although data are limited, existing studies present enough evidence to argue for the inclusion of subcutaneous valproate in the palliative care armamentarium for selected circumstances. Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163241234597   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  a.nwosu@lancaster.ac.uk