Sage Palliative Medicine & Chronic Care

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 ri

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 mus

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

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 f

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

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

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 li

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

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 fo

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, cog

This episode features Madeleine Juhrmann (Northern Clinical School, University of Sydney, Sydney, NSW, Australia. HammondCare Centre for Learning and Research in Palliative Care, Greenwich Hospital, Greenwich, NSW, Australia). Global demand for palliative care is increasing and the reliance on exclusively specialist hospital-based care is becoming unsustainable. Community preferences also favour home-based deaths. Paramedics are in a unique position to help deliver palliative and end-of-life care in the home, especially after-hours for palliative care emergencies. However, their role is traditionally limited to providing life-sustaining interventions for acute emergencies and conveyance to hospital. No overview of the role paramedics play in delivering palliative and end-of-life care in community-based settings currently exists. The findings of the review suggest paramedics can play an important role in providing emergency support to patients approaching end-of-life, help facilitate home-based deaths, and

This episode features Prof. María Arantzamendi (Institute for Culture and Society, ATLANTES, Universidad de Navarra, Pamplona, Navarra, Spain). Coping is essential to manage the challenges that palliative care professionals face in their daily clinical work and most well-known explanations focus on emotion or problem-based coping. Many of the studies about coping tend to focus on its effect and consequences. The last review about coping in palliative1 care used a dichotomous approach for influential factors (risk or protective), professional and personal strategies. Coping can include a variety of strategies from proactive coping, self-care based coping, self-transforming coping and encountering deep professional meaning. Specific training, healthcare team, professional motivation and family were found to be sometimes protective and other times risk factors. Emotional burden and the systemic or administrative factors always appear as risk factors. Throughout a dynamic adaptation and learning process over t

This episode features Dr Eloise Radcliffe (University of Southampton, Southampton, UK) and Aysha Khan (The Christie NHS Foundation Trust, Manchester, UK) People living with cancer that is treatable but not curable have complex needs, often managing their health and wellbeing at home, supported by those close to them. People living with cancer that is treatable but not curable often wish to maintain independence, normality and control over their lives. Patients living with cancer that is treatable but not curable and their carers experienced heightened uncertainty and a sense of lost opportunities as a result of the COVID-19 pandemic. While changes to treatment led to some concern about the longer-term impact on their health, most patients reported feeling well-supported by healthcare teams. Findings have wider resonance for people living with other life-limiting conditions. It is important that the psychosocial impact of the COVID-19 pandemic on patients and carers is recognised by those who commission

This episode features Jennifer Baxley Lee (Ulster University, Institute of Nursing and Health Sciences Research, Northern Ireland, UK University of Florida, Center for Arts in Medicine, College of the Arts, Florida, USA). An expanding body of evidence demonstrates the positive impacts of the arts on health and well-being. No synthesis currently exists presenting evidence on arts interventions facilitated by artists as distinct from creative arts therapists with individuals with life-limiting illness. This paper presents the first systematic synthesis of the benefits, challenges and key knowledge gaps in arts engagement delivered by artists in palliative and end-of-life care. Findings substantiate beneficial effects of the arts in palliative care, including: 1) a sense of well-being, 2) a newly discovered, or re-framed, sense of self, and 3) connection with others. Challenges associated with practice include navigating the complexity of facilitating arts engagement with individuals with life-limiting illness

This episode features Dr Nicola White (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK), Dr Christina Gerlach (University Medical Center Hamburg-Eppendorf, Hamburg, Germany), Dr Bert Leysen (Department of Metabolism, Digestion and Reproduction, Faculty of Medicine, Imperial College London, London, UK) and Prof Yvonne Engels (Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Centre, Nijmegen, The Netherlands). The Surprise Question (‘Would I be surprised if this patient died within 12 months?’) is a screening tool which is used to identify patients with palliative care needs. The Surprise Question alone is not a very accurate way to prognosticate. It is not known whether prognostication with the Surprise Question is difficult because clinicians are intrinsically poor prognosticators, because the Surprise Question is interpreted in different ways by different clinicians, of because clinicians themselves are inconsistent in t

This episode features Dr Diah Martina (Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Rotterdam, The Netherlands). Asian healthcare professionals hold that patients’ family play a central role in advance care planning and rarely engage patients in it. Despite the wide range of studies on advance care planning in different populations in Asian countries, and despite their variety of methodologies and conceptualizations of advance care planning, there has been no systematic synthesis of their results. This study demonstrates that although a majority of Asian patients regarded advance care planning as necessary, more varied results were produced by studies that examined their actual willingness to engage in it. Willingness to engage in advance care planning was affected not only by patients’ knowledge of their disease and advance care planning, but also by their beliefs: (a) about its advantages or disadvantages; (b) that its concept should be in accordance w

This episode features Dr Ben Bowers (Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK). The prescribing of injectable anticipatory medications to provide symptom relief in the last days of life is recommended and widespread practice in a number of counties. There is limited research concerning the frequency, timing and context of prescriptions. Half (50.8%) of 329 patients whose deaths were potentially predictable deaths were prescribed anticipatory medications, the timing of prescriptions ranging from 0 to 1212 days before death (median 17 days). Anticipatory medications were frequently prescribed as standardised drugs and doses, and often as part of a single end-of-life care planning intervention. Patients’ and family carers’ involvement in prescribing decisions was unclear. Patient and family preferences for involvement in anticipatory medications prescribing decision-making and their experiences of care warrant urgent investigation. The presence o

This episode features Dr Markus Krause (Institute of General Practice and Family Medicine, Jena University Hospital, Jena, Germany) and Antje Freytag (Institute of General Practice and Family Medicine, Jena University Hospital, Jena, Germany). Palliative homecare is an important component of palliative care, and it has a positive impact on the quality of care at the end-of-life. The effect of different types of palliative homecare on quality of care is sparsely researched. Within palliative homecare, cancer patients still outweigh non-cancer patients. We compared two types of palliative homecare in Germany: primary palliative care and specialized palliative homecare. Both reduced potentially aggressive interventions at the end-of-life. The more comprehensive specialized palliative homecare was associated with less potentially aggressive interventions in terms of lower rates of hospital as the place of death, hospital care, intensive care treatment, chemotherapy, and application of a percutaneous endoscopic

This episode features Jamilla Akhter Hussain (Wolfson Palliative Care Research Centre, Hull York Medical School, Hull, UK),  Jonathan Koffman (Cicely Saunders Institute of Palliative Care and Rehabilitation, King’s College London, London, UK) and Sabrina Bajwah (Cicely Saunders Institute of Palliative Care and Rehabilitation, King’s College London, London, UK). This podcast describes an editorial which explores the issue of racism in palliative care. The authors explores definitions of racism and highlight the importance to acknowledge that racial and minority ethnic disadvantage exists in palliative care. The authors argue that ant-racist action should be taken and describe mechanisms to facilitate this. The authors highlight how changes at the individual, community and organisational level need to be alongside policies and actions to address structural issues because racism is a system-level issue.