Patient Perspectives On States Worse Than Death: A Qualitative Study With Implications For Patient-Centered Outcomes And Values Elicitation Sage Palliative Medicine & Chronic Care podcast

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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…

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Components of home-based palliative and supportive care for adults with heart failure: A scoping review 4:27

6 weeks тому4:27

4:27

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…

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Multiple points of system failure underpin continuous subcutaneous infusion safety incidents in palliative care: A mixed methods analysis 4:58

9 weeks тому4:58

4:58

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…

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Definition and recommendations of advance care planning: A Delphi study in five Asian sectors 4:32

9 weeks тому4:32

4:32

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…

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The double awareness of the wish to hasten death and the will to live: A secondary analysis of outlier patients from a mixed-methods study 4:30

21 weeks тому4:30

4:30

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…

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Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study 4:35

21 weeks тому4:35

4:35

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…

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Electronic symptom monitoring for home-based palliative care: A systematic review 3:59

25 weeks тому3:59

3:59

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…

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Primary palliative care: Onwards and upwards! 5:54

25 weeks тому5:54

5:54

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…

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Primary palliative care: Onwards and upwards! 5:54

27 weeks тому5:54

5:54

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Primary Palliative Care - onwards and upwards! 4:26

33 weeks тому4:26

4:26

Primary Palliative Care - onwards and upwards!

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What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study 4:05

43 weeks тому4:05

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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…

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Subcutaneous sodium valproate in palliative care: A systematic review 3:37

43 weeks тому3:37

3:37

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…

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How palliative care professionals develop coping competence through their career: A grounded theory 4:52

43 weeks тому4:52

4:52

This episode features Dr Maria Arantzamendit, (Universidad de Navarra, Institute for Culture and Society-ATLANTES Global Observatory of Palliative Care, Pamplona, Navarra, Spain. IdISNA-Instituto de Investigación Sanitaria de Navarra. Medicina PaliativaK). What is already known about the topic? Palliative care professionals use coping strategies to deal with the emotional challenges of their work. Coping skills are essential for professionals to stay and remain in palliative care. What this paper adds? A grounded theory of a five-phase transformative process through which palliative care professionals develop coping capacity and evolve from a phase of emotional contention toward one of care based on inner balance and a transcendent perspective. Key factors influencing the development process are some clinical cases, teamwork, and selfcare. The study shares how the sensations of feeling overwhelmed can sometimes be reversed as professionals come to understand how to care for themselves. Implications for practice, theory, or policy The model may help palliative care professionals to understand how they can develop their coping skills. This study emphasizes the role of certain team mates from close teams as influential in developing coping skills. Institutional support and recognition for the work of palliative care professionals is important in the coping process. Full paper available from: https://journals.sagepub.com/doi/10.1177/02692163241229961 This podcast is available in other languages - see below: SPANISH: https://drive.google.com/file/d/1P088hWpeej3amYKeNoXNoigeHP4sIl3k/view?usp=sharing PORTGUESE: https://drive.google.com/file/d/1P25tKjGvITEqovNeeBgD-2PuDC8jEcHW/view?usp=sharing VASQUE: https://drive.google.com/file/d/1P8maXlqHyGPuENRKzaIbRVR6NnUqoydE/view?usp=drive_link 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…

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What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and… 4:30

43 weeks тому4:30

4:30

This episode features Hannah Scott, (King’s College London, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, London, UK) What is already known about the topic? Person-centred outcome measures have been shown to improve the quality of care and patient outcomes in adult palliative care when successfully implemented into routine care. Several factors influence implementation in adult services, but they have not been identified in care for children with life-limiting and life-threatening conditions. The views of stakeholders are key to successful development, implementation and use of outcome measures in practice. What this paper adds? Perceived benefits of using person-centred outcome measures include enhanced understanding of what matters to patients and families, improved communication and collaborative working and standardised data collection and reporting; perceived risks include negative impacts on care and measures not being used as intended. Potential barriers to implementation include acceptability and usability of the measure for children, burden and capacity of patients and families to complete the measure, privacy concerns, protecting family members and language barriers; potential facilitators include explaining the benefits of person-centred outcome measures and securing ‘buy-in’, measures being implemented by known and trusted health and social care staff and the language in the measure being meaningful to children and families. Eight recommendations are presented to minimise risks and support successful implementation of child and family-centred outcome measures for children with life-limiting and life-threatening conditions. Implications for practice, theory, or policy The benefits of person-centred outcome measures for care should be explained to children, families and professionals to facilitate buy in and successful implementation. Implementation strategies should be designed collaboratively with professionals to ensure implementation of person-centred outcome measures is feasible within current practice and does not impact negatively on care. Professionals introducing and administering the measure should be known and trusted by the child and family, and should discuss usage preference and information sharing to address any privacy concerns. Full paper available from: https://journals.sagepub.com/doi/full/10.1177/02692163241234797 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…

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Long-term bereavement outcomes in family members of those who died in acute care hospitals before and during the first wave of COVID-19: A cohort study 4:12

1 year тому4:12