Sage Palliative Medicine & Chronic Care

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 [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 [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 [https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Furldefense.com%2Fv3%2F__https%3A%2F%2Fjournals.sagepub.com%2Fdoi%2Ffull%2F10.1177%2F02692163241290350__%3B!!NVzLfOphnbDXSw!ElDaTJBLxR6W19OL-5_SO7Xrxk-egX8MxOGMBnpM9gKnZzsvKQgCVwRKZ8ziXLKtwj2RTGMfxPkH6buLejxInD9yzBLtLrYDZMLc%24&data=05%7C02%7CNitu.Bala%40sagepub.in%7C0a703659287848daf3e908dd56cb0c8c%7C866b3abd7515461abdb412b4a1857f04%7C0%7C0%7C638762152323233465%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=YxRUhhkUyq4jPAjP0CTvJg9iuxjg0ev%2BxmGggPI1YaE%3D&reserved=0]   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 [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 [https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fjournals.sagepub.com%2Fdoi%2Ffull%2F10.1177%2F02692163241287639&data=05%7C02%7CNitu.Bala%40sagepub.in%7C77bd0e680f674693635008dd45d0210e%7C866b3abd7515461abdb412b4a1857f04%7C0%7C0%7C638743482726347259%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=rU7UistSmPP5yQqHQlBDEF6gXx33EFhS7lOpOu5%2B6WI%3D&reserved=0]  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 [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 [https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fjournals.sagepub.com%2Fdoi%2Ffull%2F10.1177%2F02692163241284088&data=05%7C02%7CNitu.Bala%40sagepub.in%7Cfe61c767aa744c4351ca08dd420b3da5%7C866b3abd7515461abdb412b4a1857f04%7C0%7C0%7C638739338577843955%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=v0avJzQkeo7npz2Mryf1g6YonMuN%2BjpfIygQ9nSmNOY%3D&reserved=0]   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 [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 [https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fjournals.sagepub.com%2Fdoi%2Ffull%2F10.1177%2F02692163241269689&data=05%7C02%7CNitu.Bala%40sagepub.in%7Cd12ad38933d84427498b08dd03287630%7C866b3abd7515461abdb412b4a1857f04%7C0%7C0%7C638670194782469547%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=2ZpqHstgycJZTpYorqzscCBGq9PctmBH1Sa6u%2FsXGgE%3D&reserved=0]   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 [a.nwosu@lancaster.ac.uk]