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   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

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

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

This episode features Dr Fiona Kenney and Koby Anderson, (Ottawa Hospital Research Institute, Ottawa, ON, Canada Bruyère Research Institute, Ottawa, ON, Canada)   What is already known about the topic? Previous research demonstrates a high prevalence of severe grief symptoms up to a year post-death of a loved one among those who experienced bereavement during the COVID-19 pandemic. No previous study has assessed changes in the severity of grief more than a year after the death of a loved one during the COVID-19 pandemic.   What this paper adds? This prospective cohort follow-up study found the prevalence of severe grief reaction remained high (28.8%) at 12–18 months post- family member death. One-third (33.3%) of family members experienced persistently high or worsening grief symptoms at the time of their 12–18-month assessment compared to baseline 6–12-month assessment. Grief severity was associated with endotracheal intubation in the deceased, but not with the cause of death (e.g., COVID vs non-COVID illness) or physical presence/absence of the family member at the bedside in the final 48 h of life.   Implications for practice, theory, or policy There is a persistent, elevated risk of severe grief among family members who experience bereavement during the pandemic period, even up to 18 months post-death of the decedent. There is an urgent need for effective and scalable means of addressing severe grief in the wake of the COVID-19 pandemic.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163231223394   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 Sue-Ling Chang, (CHU de Québec-Université Laval Research Center, Oncology Division, Québec City, QC, Canada)   What is already known about the topic? There is a growing interest in psilocybin-assisted therapy worldwide, particularly to treat existential distress at the end of life.   What this paper adds? In this study, we show that the social acceptability of psilocybin-assisted therapy to treat existential distress at the end of life is high in Canada and identify factors associated with favourable attitudes of the population towards it.   Implications for practice, theory, or policy Our findings may help mobilise resources to address barriers and challenges for implementing psilocybin-assisted therapy within palliative medicine and society. This could also have implications for policies regarding medical assistance in dying.  Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163231222430  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 Carlos Seiça Cardoso (Faculty of Medicine, University of Coimbra, Coimbra, Portugal CINTESIS@RISE, MEDCIDS, Faculty of Medicine of the University of Porto, Porto, Portugal)  What is already known about the topic? The burden of chronic, progressive, incurable and life-threatening illness is increasing, highlighting the need to integrate palliative care into patients' care plans. Data indicate that involving General Practitioners in the provision of palliative care may improve outcomes for patients and families, but the evidence on the effectiveness of interventions for patients with palliative care needs in primary care is still scarce.  What this paper adds? We developed a training programme, from logistics to content, to be feasible for General Practitioners and to address the main topics in which they identified training needs. A two-tiered intervention was implemented, involving training and a new consultation model; this was shown to be feasible and effective in reducing the physical and emotional symptoms of patients with palliative needs managed in primary care. To the best of our knowledge, this is the first intervention involving General Practitioners, that assesses the impact on patients' self-reported symptoms and demonstrates positive effects.  Implications for practice, theory, or policy General Practitioners may test whether the intervention is applicable in their own setting, as there is potential for transferability to similar primary care settings elsewhere in the world.   We successfully implemented and evaluated an intervention with a statistically and clinically important impact on patients, showing that research in primary palliative care can and must expand, as it may be key in the initial care of patients with palliative needs.   Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163231219682  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 Ellis Slotman (Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht, the Netherlands)  What is already known about the topic? Potentially inappropriate end-of-life care in patients with cancer is still common. The COVID-19 pandemic has been shown to affect cancer diagnosis and treatment, but evidence on how the pandemic has affected end-of-life care is limited.   What this paper adds? The COVID-19 pandemic was associated with less potentially inappropriate care at the end of life in patients with cancer.  The decline in potentially inappropriate end-of-life care was driven by fewer hospitalizations and intensive care unit admissions in the last month of life and fewer hospital deaths.   Implications for practice, theory, or policy The findings of this study raise important questions as to which pandemic related changes in end-of-life care delivery and decision making might be able to contribute to appropriate end-of-life care for future patients.  Ensuring that awareness for triaging and advance care planning is maintained after the pandemic may be of great importance in this regard.  Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163231217373  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 Vanessa Abrahamson, (Centre for Health Services Studies, University of Kent, Kent, UK).   What is already known about the topic? Increasingly, people at end-of-life want to die at home but this relies heavily on family carers to support the patient. Many carers struggle with the practical and emotional burden of caring for a loved one at home. Services providing hospice care at home are highly rated by carers but access is limited and the model of care varies greatly between services, with little data on how this affects patient/carer experiences.   What this paper adds? Hospice-at-home services need to set clear expectations from the start so that families know exactly what the service can, or cannot, provide; this helps establish confidence in the service and build a strong relationship with the carer. Carers valued the expertise of hospice staff (in death and dying) and that they had time to care in a flexible and compassionate manner, which other services lacked. Carers felt ‘doubly' bereaved when the person they cared for died and the hospice team immediately withdrew; existing bereavement services did not suit many carers, particularly younger families.   Implications for practice, theory, or policy Carers appreciated early contact with services but placing the onus on carers to trigger increased help when needed was not found supportive. There should be regular review of needs for the carer as well as for the patient and services available to address both their needs; services could consider options to increase volunteer contributions to hospice-at-home services. Hospice services could consider how to provide bereavement support that meets carer preferences.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163231206027   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 Nivedita Ashok, (University College London, London, UK).   What is already known about the topic? Individuals with intellectual disability or serious mental illness have high rates of mortality due to physical comorbidities. These populations have specific needs that should be met to provide optimum palliative care and maintain optimum mental healthcare at the end-of-life. While research exists describing the problems these populations face, little is known about how to improve care for them.   What this paper adds? By focusing on lived experiences of patients/service users, carers and healthcare professionals this paper synthesises existing evidence into multivoiced perspectives on what works, does not work, plus challenges and opportunities for improvement. Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common, while adapting training for palliative care staff to address concerns and beliefs about mental illness helps to avoid diagnostic overshadowing. Professionals need help to work across divides between physical and mental healthcare services, so people can receive palliative care in familiar locations and/or from familiar people.   Implications for practice, theory, or policy A significant research deficit exists regarding provision of optimal palliative care to people with psychosis, personality disorders, bipolar affective disorder and depression. Assessing capacity may be optimally achieved by involving professionals across specialities and organisations. Proactive identification of service arrangements for care needs of persons with serious mental illness will help optimise care.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163231175928    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 Caitlin Spooner (Marie Curie Palliative Care Research Department, University College London, London, UK).  What is already known about the topic? - Currently, there is no gold standard for evaluating how different methods of prognosticating in advanced cancer impact on patient care. - Prognostic models are principally evaluated by their statistical performance, determining their discrimination and calibration. However, before any prognostic model can be recommended for use in clinical practice, it is necessary to demonstrate whether or not it has a beneficial impact on patient care. - There is a lack of consensus among stakeholders about how to assess the impact of prognostication in advanced cancer, with prognostic studies varying in the outcomes they select.  What this paper adds? - We identified a wide variety of outcomes and measures used in published studies, which makes inter-study comparability problematic. - Our findings highlight the widespread effect that prognostication in advanced cancer has on patients and informal caregivers. - The lived experiences of patients and informal caregivers regarding prognostication in advanced cancer are not always represented in the outcomes quantitative prognostic studies measure.  Implications for practice, theory, or policy - Further research is needed to identify and prioritise outcomes to measure the impact of prognostication in advanced cancer. - Patients' and informal caregivers' experiences and perspectives should always be incorporated when evaluating the impact of prognostication. - Outcome selection in prognostication studies needs to be more consistent and standardised.  Full paper available from:    https://journals.sagepub.com/doi/full/10.1177/02692163231191148  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 Amara Nwosu (Lancaster Medical School, Lancaster University, Lancaster, UK; Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK; and Marie Curie Hospice Liverpool, Liverpool, UK). The podcast is an overview of a published editorial on telehealth in palliative care. Dr Nwosu highlights the unrealised potential of palliative care telehealth, and discusses the opportunities and challenges associated with telehealth. Finally, Dr Nwosu describes the next steps needed for research evaluating palliative care telehealth.   Full paper available from:    https://journals.sagepub.com/doi/full/10.1177/02692163231182461   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

Title "Hospital-service use in the last year of life by patients aged ⩾60 years who died of heart failure or cardiomyopathy: A retrospective linked data study" Description This episode features Dr Gursharan K Singh (Centre for Healthcare Transformation, Faculty of Health, Queensland University of Technology (QUT), Brisbane, QLD, Australia). What is already known about the topic? - Evidence based guidelines recommend palliative care for individuals with advanced heart failure, yet there is limited data on acute hospital and palliative care service use prior to death, to inform care planning and end-of-life services. What this paper adds? - Patients were generally aged ⩾80 years old and experienced repeat acute hospitalisations in the year preceding death. - Over half died in hospital, without a hospitalisation for palliative care recorded. - For those who had a hospitalisation for palliative care recorded, this mostly occurred in the last 7 days of life. Implications for practice, theory, or policy - Improving access to palliative care services in the outpatient or community setting is needed to reduce avoidable hospitalisation - Improving access to timely palliative care, including end-of-life care, for patients with heart failure is needed.   Full paper available from:    https://journals.sagepub.com/doi/full/10.1177/02692163231180912  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 Hannah May Scott (Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, King's College London, London, UK).   What is already known about the topic? - Although spiritual concerns are recognised as a core component of palliative care for children, there is a paucity of primary data. - Self-report data from children is rare, and existing evidence is largely proxy data from parents or health and social care professionals and mainly focused on the religious aspect of spiritual care for cancer patients.   What this paper adds? - Specific spiritual concerns among children with a range of life-limiting and life-threatening conditions and their families (parents and siblings) included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. - This work broadens understanding of the spiritual domain for these children beyond religious needs to existential and value-based spiritual concerns. - Recognition of the way in which children conceptualise spirituality and being able to identify their spiritual concerns is essential for child- and family-centred holistic palliative and end-of-life care.   Implications for practice, theory, or policy - Professionals can optimise children and family's wellbeing through identification of the things that provide meaning for them, and working together to set goals and actions towards achieving them. - Such concerns must be assessed beyond religious considerations. - Simple tools and training to support professional may be useful in implementing this.  Full paper available from:    https://journals.sagepub.com/doi/full/10.1177/02692163231165101  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 Jenny Lau (Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada; Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada; Division of Palliative Care, University Health Network, Toronto, ON, Canada) and Dr. Daniel Buchman (Everyday Ethics Lab, Centre for Addiction and Mental Health, Toronto, ON, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada; University of Toronto Joint Centre for Bioethics, Toronto, ON, Canada)   What is already known about the topic? •             Communicable disease epidemics and pandemics, such as the COVID-19 pandemic, intensify the healthcare inequities encountered by people who use drugs. •             Pandemics are expected to increase the demand for palliative care resources. •             People who use drugs with life-limiting illnesses experience inequities in access to palliative care. •             There is limited evidence beyond the HIV/AIDS context to guide decision-makers on the provision of palliative care for people who use drugs during communicable disease epidemics and pandemics.   What this paper adds? •             This paper demonstrates that there is limited knowledge about how to provide palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS. •             We identified enablers and barriers to equitable palliative care access, which include organizational barriers, issues related to stigma and structural inequity, and access to opioids and other substances •             Our findings build on past research that seeks to integrate the premises of health equity within palliative care so health systems can be better prepared for future epidemics and pandemics.   Implications for practice, theory, or policy •             The findings from our scoping review provides accessible and relevant evidence for healthcare professionals and decision-makers (e.g. policy makers, administrators) that can be applied to the COVID-19 pandemic response efforts and potentially future epidemics and pandemics. •             More research is needed about palliative care access, policies, and programs for people who use drugs during communicable disease epidemics and pandemic beyond the HIV/AIDS context.  Full paper available from:    https://journals.sagepub.com/doi/10.1177/02692163221143153  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 Rachael Moss (Bradford Institute for Health Research, Bradford Teaching Hospitals Foundation Trust, Bradford, UK). What is already known about the topic: - The degree to which individuals access and use palliative and end-of-life care services varies across communities and countries.   What this paper adds: - This study found that the South Asian community (in Bradford, UK) are currently not ready to engage with palliative and end-of-life care services despite local initiatives to improve awareness. They are at the “pre-planning stage” (see Table 1) about end-of-life care options and of the services that are available to them. - This study also found evidence that the services that aim to support people from minoritised ethnic communities at the end-of-life are not ready to address ethnic inequities. - Such services were found to have: (i) a narrow focus during advance care planning, (ii) poor integration of voluntary and community services (iii) and limited understanding of what a good death looks like for people from different cultural and religious backgrounds.   Implications for practice, theory or policy: - This study highlights the importance of assessing the degree to which both the community and the health and social care systems are ready to incorporate new initiatives so they are effective and successful in addressing (and not strengthening) existing inequities.   Full paper available from:    https://journals.sagepub.com/doi/full/10.1177/02692163221146587   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 Isabel Vandenbogaerde (End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium). What is already known about the topic: Involvement of family carers in advance care planning conversations is crucial for end-of-life decision-making. Family carers are willing to engage in advance care planning conversations, but experience barriers in doing so. Healthcare professionals may play an important role in supporting family carers in these advance care planning conversations. What this paper adds: About half of the family carers have an advance care planning conversation with their relative in the final 3 months of life. Family carers were more likely to engage in advance care planning in case they were 55 of age or younger, had a medical degree (e.g. nurse or doctor), and when specialist palliative care services were involved The majority of family carers received advance care planning conversation support from a healthcare professional by performing the advance care planning conversation together. Implications for practice, theory or policy: Healthcare professionals can play an important role in introducing tools, website or information campaigns of advance care planning. Healthcare professionals may consider strategies to support and empower family carers to conduct advance care planning conversations outside the clinical context. Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163221135032 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 Joyce Chung and Weilin Chen (School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Kowloon, Hong Kong SAR, China). What is already known about the topic: End-of-life communication can improve patients' quality of life, ease the bereavement experience, raise care satisfaction and reduce the utilisation of aggressive and expensive medical care. Healthcare professionals' perceived barriers, such as fear of causing distress, impede the delivery of end-of-life conversations in a professional, sensitive and appropriate manner. The communication strategies available to healthcare professionals for discussing end-of-life issues with terminally ill patients and their families have not yet been systematically summarised. What this paper adds: This review systematically examines, summarises and presents recommended end-of-life communication strategies for healthcare professionals. It organises these communication strategies into seven themes that should be considered when delivering end-of-life conversations. This review highlights that further research is needed to explore patients' and families' perspectives on healthcare professionals' end-of-life communication strategies; and available strategies in non-Anglo-Saxon countries. Implications for practice, theory or policy: The valuable strategies outlined in this review will assist and support healthcare professionals when having end-of-life conversations with their patients. Further training and education plans should be developed and implemented based on the study findings. Further research is needed to explore patients' and their families' experiences and views on end-of-life communication strategies used by healthcare professionals; and practical strategies to use in non-Anglo-Saxon countries. Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163221133670 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 Suzanne Smith (Master of Palliative Care student, Flinders University, Australia; Victorian Paediatric Rehabilitation Service, Australia), Dr Megan Doherty (University of Ottawa, ON, Canada; Children's Hospital of Eastern Ontario, Ottawa, ON, Canada) and Dr Mostofa Kamal Chowdhury  (BangabandhuSheikh Mujib Medical University, Dhaka, Bangladesh). What is already known about the topic: The majority of children who need, but cannot access essential palliative care and pain relief, live in low-and middle-income countries. An estimated 10 million Bangladeshi children live with a disability and associated serious health-related suffering that may lead to premature death. Children from low- and middle-income countries are underrepresented or absent from existing palliative care reviews. What this paper adds: This review illuminates the extreme health-related suffering experienced by children with disability and their families in Bangladesh in the physical, social, and emotional/spiritual domains. Financial hardship, stigma, limited knowledge and compromised children's rights impede access to healthcare in Bangladesh. Children with disability living in an urban marginalised society and Rohingya children with disability living in refugee camps in Bangladesh may receive care commensurate with the International Association for Hospice and Palliative Care revised definition of palliative care Implications for practice, theory or policy: This review identifies innovative and novel models of effective service delivery, outside of mainstream healthcare settings, which combine both palliative care and rehabilitation principles. Further strengthening Child Rights in Bangladesh will reduce serious health-related suffering. Collaborations between Bangladeshi and International researchers are productive and should continue to inform future service development. Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163221136896 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 Richard Green (University of Surrey, Guildford, UK). Multimorbidity is increasing substantially worldwide, is associated with greater use of healthcare services, lower quality and quantity of life, and rises with age. Older people with multimorbidity are expected to become the main recipients of palliative care in the coming decades; however, there is limited evidence of their specific needs. Older people's voices are vital to understanding their own palliative care needs and priorities, but these voices are hampered by structural inequities in service provision. This is the first paper reporting on the expressed palliative care needs of community-dwelling older people with multimorbidity. The most common palliative care needs identified across need domains were pain, function, unhappiness, staying socially connected, future planning, person-centred care and having meaning and purpose in life. This paper highlights different priorities between the reported items in tools used to collect palliative care need and needs expressed by older people with multimorbidity. Further evidence is required to understand need to support service changes required to provide accessible, person-centred care to this underserved population. Multidimensional palliative care tools require refining to encompass complexity beyond the standard domains of palliative care. Community palliative care provision should involve the integration of care across sectors and recognise the diversity of needs across the continuum of living and dying well for older people with multimorbidity Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163221118230 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 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 Andrew Page (Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK). Cancer pain is common, extremely debilitating, and undertreated worldwide. We do not know if non-steroidal anti-inflammatory drugs (aka NSAIDs or “anti-inflammatories”) are effective in managing cancer pain of any type. To further scientific understanding, UK palliative care doctors advocate a pragmatic trial to determine the role, if any, of NSAIDs as opioid adjuncts for treating cancer-induced bone pain. Numbers treated for cancer-induced bone pain at a single regional radiotherapy centre (478 per year) support the feasibility of trial recruitment. Considering eGFR and contraindicating co-morbidities, two-thirds could be suitable for NSAID prescription if proven efficacious. Suitability for NSAID prescription reduces with age, with the proportion unsuitable increasing in those over 65 years old. Recruitment to a future trial of NSAIDs in the management of cancer-induced bone pain appears feasible, particularly if multiple recruitment centres are used. Demonstrating feasibility allows the planning of a definitive clinical trial to determine the efficacy of NSAIDs in this patient group. Without a definitive clinical trial, the question remains: are effective analgesics being underutilised in cancer pain management, or are ineffective medications increasing the risk of side effects in an already co-morbid cancer population? Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163221122263 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 James Downar (University of Ottawa, Canada). Early studies in the COVID-19 pandemic have suggested a high prevalence of severe grief symptoms, although most have used convenience or survey sampling methods which may bias the results, and most have assessed symptoms before pathological grief can be diagnosed (

This episode features Dr Sofia Morberg Jämterud (Linköping University, Linköping, Sweden) and Anna Sandgren (Linnaeus University, Växjö, Sweden). Serious illness conversations promote patients' possibility of receiving care that is in accordance with their wishes and priorities. Identifying patients for serious illness conversations remains difficult even when palliative care needs are identified. Identification of patients for serious illness conversations is a process influenced by a multitude of factors, such as the patients' palliative care needs, continuity in patient–professional relations and continuity of staff. Highlights the hesitation of non-palliative care professionals in identifying the patients for serious illness conversations due to existential and ethical concerns, such as fear of taking away hope. Identifying patients for serious illness conversations is a complex process involving several factors and is not limited to using generic tools, such as the surprise question. Identifying the right patient at the right time involves existential and ethical concerns which may impact healthcare professionals' willingness to identify patients and offer serious illness conversations. Further research is needed on how health care professionals' values and attitudes influence the identification process.

This episode features George Muishout (Department of History, European Studies and Religious Studies, Amsterdam School for Historical Studies, University of Amsterdam, Amsterdam, The Netherlands). To Muslims it is important that medical decisions are in accordance with Islamic values. In life-threatening illness, Muslims ask imams for religious advice on medical decision-making. So far, it is unknown how imams view and perform this task in palliative care. Imams advise the faithful not to consent to withholding or terminating treatment based on diagnostics because they feel this does not align with belief in God's omnipotence and will. Imams are reluctant to advise patients to consent to termination of treatment for fear that all Muslims involved will be held accountable for someone's death by God in the afterlife. Fatwas by Muslim expert committees play an important role in shaping medical decision-making in palliative care. Palliative care tailored to the cultural religious needs of Muslim minorities must be developed. Implementing adequate palliative care for Muslim minorities requires sustainable collaboration with imams and their congregations.

This episode features researchers from the the University of Cologne (Germany) from the Faculty of Human Sciences and Faculty of Medicine, Graduate School GROW – Gerontological Research on Well-being, and also the Faculty of Medicine and University Hospital, Department of Palliative Medicine. The researchers are Helena Kukla, Angélique Herrler, Dr Julia Strupp and Professor Raymomd Voltz. Awareness of one's impending death can lead to existential distress, thus impairing psychological comfort and general well-being. Psychosocial support as an emerging need can alleviate symptoms of distress and enhance well-being. Research on behavioral and mental confrontation with one's own end of life and its effects on measures of psychological comfort is limited. Evaluated approaches of confronting the own end of life can be grouped into psychosocial interventions, meaning-enhancing interventions, educational courses and experiential learning. The effects of evaluated approaches show a clear trend toward an increase in well-being and a decrease in anxiety and depression. Low-threshold opportunities that fulfil psychosocial needs beyond medical treatment and focus on confronting end of life should be implemented. The opportunity to confront the end of life and address existential questions should become an area of greater focus within patient-centered care. The variety of approaches of confronting the end of life and their effects need to be investigated, as do the underlying mechanisms of action. In light of the scarcity of actual evidence, the focus should be particularly on individual coping strategies.

This episode features Professor Scott Murray (Primary Palliative Care Research Group, University of Edinburgh, Scotland, UK). People living at home with advanced progressive illness require well-coordinated services at all times of the day and night. Early identification for generalist palliative care support and care planning in the community can improve outcomes but requires effective information sharing across services. People with palliative care needs are high users of unscheduled care in the last months of life. People dying with advanced organ failure accessed unscheduled community health services less often than people with cancer or frailty. The organisation of unscheduled healthcare services is poorly understood, and current care pathways could be used more effectively in line with patient preferences. Early identification and care planning in primary care of those requiring palliative care informs and enhances their urgent and emergency care. Better resourcing of unscheduled community services for people identified for palliative care support in the community will provide safer, more responsive, and cost-effective care. Rapid access to unscheduled care via effective NHS telephone services and out-of-hours primary care assessment can reduce unwarranted ambulance calls, attendances at emergency departments and hospital admissions. Public education should encourage and support patients and carers living with advanced illness to access the unscheduled care best suited to their needs. Routine clinical datasets for most NHS unscheduled care services lack a variable to record patients in the community identified for palliative care. Full paper available from: https://journals.sagepub.com/doi/10.1177/02692163211066256 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, Kathleen Boström and Dr Kerstin Kremeike (Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany. Patients in palliative care frequently express a desire to die that rarely leads to a request for medical aid in dying. Fearing to cause harm, health professionals report uncertainty regarding proactively approaching the topic with their patients. Suicidology research suggests that there is no iatrogenic risk in asking about suicidality, but it remains unclear whether this analogy holds for non-psychiatric palliative patients with or without a desire to die. Independent of age, gender, diagnoses, and current desire to die, open conversations about desire to die through trained health professionals do not harm palliative patients. Desire to die conversations might lead to an at least temporary improvement in patients with medium to severe depression. Health professionals can feel encouraged to promote an open and respectful atmosphere of conversation about existential issues at the end of life including possible desire to die.

This episode features Si Qi Yoong (National University of Singapore, Singapore). Death doula is a relatively new role found in the United States, United Kingdom, Canada and Australia. Death doulas provide support to the dying and their families. There is uncertainty about its roles, scope of practice, regulation and position within the healthcare system. This review clarifies the uncertainty of the death doula movement in terms of its roles, impacts of care and regulation issues. This review identifies five common roles death doulas undertake when providing non-clinical care to support the dying and their families. The review highlights a lack of experimental research to examine the actual effects of death doulas among the dying and their families and echoes a paucity of professional regulations over its training process and practice. Death doulas could be a valuable addition to existing end-of-life care services by alleviating the healthcare system's time and resource constraints. A need exists for future research to investigate its actual effect among the dying and their families. The lack of regulation of death doulas may imply a lack of acknowledgement of this role, calling for more efforts from diverse stakeholders. A better understanding of this newly emerged care model could pave the way for its recognition and integration into existing healthcare and social care systems.

The EAPC published recommendations on standards and norms in palliative care for Europe in 2009. The Delphi technique is a well recognised way to elicit the views of stakeholders and obtain consensus. There are a diversity of international and national definitions and concepts in palliative care which makes comparison between countries and delivery of health care complex. The majority (122) of standards and norms in five domains (definitions of palliative care, philosophy, levels, delivery, services) in palliative care in Europe have remained unchanged over the last decade. 13 new standards and norms reached consensus, relating to emerging specialisms such as neonatal, geriatric and dementia palliative care, and recommendations for better access to national information sources and the use of digital health records. New recommendations recognise that there are emerging subspecialisations in palliative care in the fields of neonatal paediatrics and geriatric medicine indicating that care extends across the lifespan. New recommendations also have implications for service quality improvements including enhancing open visiting, availability of essential medicines, better information exchange, including digital medical records and access to specialist equipment. Future research and clinical care needs to include multiple domains to assess quality improvements in palliative care. Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163221074547 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 Diana Ferreira (Research Fellow at University of Wollongong, Australia). Breathlessness is frequently experienced in people with advanced cancer especially in the last days or weeks of life. Although cross-sectional studies have been done, longitudinal data on changes in maximum inspiratory pressure reflecting muscle strength are lacking. This pilot study aims to evaluate the feasibility of measuring changes in sniff nasal inspiratory pressure (SNIP; a measure of inspiratory muscle strength which is non-invasive and relatively reproducible) longitudinally in people with advanced cancer that was likely to progress in the time period of the study and who had no documented cardio-respiratory disease in order to better understand changes in breathlessness at the end of life. The study was acceptable to participants (and, by implications the clinical teams who referred them) and feasible, given the recruitment rate. All of the measures used would be of value in a subsequent larger cohort study.

This episode features Professor Scott Murray (Primary Palliative Care Research Group, University of Edinburgh, Scotland, UK). People living at home with advanced progressive illness require well-coordinated services at all times of the day and night. Early identification for generalist palliative care support and care planning in the community can improve outcomes but requires effective information sharing across services. People with palliative care needs are high users of unscheduled care in the last months of life. People dying with advanced organ failure accessed unscheduled community health services less often than people with cancer or frailty. The organisation of unscheduled healthcare services is poorly understood, and current care pathways could be used more effectively in line with patient preferences. Early identification and care planning in primary care of those requiring palliative care informs and enhances their urgent and emergency care Better resourcing of unscheduled community services for people identified for palliative care support in the community will provide safer, more responsive, and cost-effective care. Rapid access to unscheduled care via effective NHS telephone services and out-of-hours primary care assessment can reduce unwarranted ambulance calls, attendances at emergency departments and hospital admissions. Public education should encourage and support patients and carers living with advanced illness to access the unscheduled care best suited to their needs. Routine clinical datasets for most NHS unscheduled care services lack a variable to record patients in the community identified for palliative care.

This episode features Dr Catherine Auriemma (Pulmonary and Critical Care Medicine Hospital of the University of Pennsylvania). Prior surveys and limited qualitative work have identified several health states that patients value as equal to or worse than death. The broad range of health states consider equal to or worse than death and the shared attributes of those states are not known. Potential for using states worse than death as a patient-centered outcome measure or values elicitation tool is unknown. In this qualitative study of 29 community-dwelling, older adults with serious illnesses, a wide range of impairments were valued as equal to or worse than death, with the most common attributes of a states worse than death being burdening loved ones and being unable to maintain human connections. Patients believed definitions of states worse than death were deeply personal and subject to change, both with time and fluctuations in health status. The common attributes underlying a broad range of physical, cognitive, and social impairments viewed as states worse than death help reveal patients' core values and preferences for care. Patients identified important barriers to using avoidance of states worse than death to guide medical decisions, limiting its applicability as an outcome measure. Asking about states worse than death could serve as a novel and efficient values elicitation tool.