Sage Palliative Medicine & Chronic Care

• Enhancing the wellbeing of refugees living with advanced life-limiting illness in high-income resettlement countries: A systematic review

  This episode features Dr Heidi Merrington (School of Public Health, The University of Technology Sydney, Sydney, NSW, Australia) and Professor Angela Dawson (School of Public Health, The University of Technology Sydney, Sydney, NSW, Australia).   What is already known about the topic? In high-income countries, refugees experience barriers to accessing health care that may delay palliative care seeking. Refugees’ cultural backgrounds and experiences of trauma, loss and grief during forced displacement shape health, wellbeing and expectations of care. Evidence is needed to inform palliative care services and approaches to supporting resettled refugees and their families.   What this paper adds This review demonstrates the dearth of research focused on resettled refugees living with advanced life-limiting illness and their families in high-income countries. The review highlighted the importance of assets such as resilience, sense of identity and belonging, community connections, social support and social capital, for enhancing the wellbeing of refugees and their families during end-of-life care and bereavement. Refugees’ cultural identity, death literacy and experiences of grief influence engagement with palliative care staff and decision-making about end-of-life care approaches.   Implications for practice, theory or policy Community networks play an important role in end-of-life care and bereavement support for refugees and their families. Participation of diverse groups of refugees in co-designed research is needed to build an evidence base to inform palliative care service approaches and develop community-based end-of-life care interventions that strengthen assets that enhance refugee wellbeing. Future studies should focus on refugees as a distinct group compared to migrants and the general population in high-income resettlement countries.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163251338583   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  [email protected]

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• Asian family members’ participation in advance care planning: An integrative review

  This episode features Jing-Da Pan (Department of Oncology, The Second Affiliated Hospital, Guangzhou Medical University, Guangzhou, Guangdong Province, China School of Nursing, Guangzhou Medical University, Guangzhou, Guangdong Province, China)   What is already known about the topic? Family members are crucial in advance care planning for patients with life-limiting illnesses, particularly in Asia, where cultural values stress family-centeredness and paternalism. No study so far has attempted to systematically synthesize this information within the Asian context and there is a lack of a model to describe Asian family members’ involvement in advance care planning.   What this paper adds? Asian family members are willing to participate in advance care planning but face difficulties in translating this willingness into action. Barriers include inadequate legislation, insufficient public education, and influences from Confucianism or traditional beliefs. A culturally sensitive model with six dimensions was developed to illustrate Asian family members’ participation in advance care planning.   Implications for practice, theory, or policy Asian governments should enact advance care planning legislation to ascertain its legal status and allocate more relevant resources to educate the public to overcome the barriers to Asian family members’ participation in advance care planning. Future efforts in advance care planning in Asia should prioritize developing culturally sensitive models which align the willingness, beliefs, and actions of Asians and the proposed conceptual model should be verified by more advanced statistical tests, thus confirming its validity in different Asian regions. Due to the paradoxical impact of filial piety on advance care planning, a culturally specific intervention is needed to help family members understand that respecting dying patients’ decisions is a filial act, ultimately improving their involvement in advance care planning.   Full paper available from:     https://journals.sagepub.com/doi/10.1177/02692163251317856   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  [email protected]

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• The experience of nurses when providing care across acts that may be perceived as death hastening: A qualitative evidence synthesis

  This episode features Victoria Ali  (Lancaster University, Lancaster, UK. Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK)   What is already known about the topic? Nurses deliver care for patients and those important to them across acts that may intentionally or potentially hasten death, navigating this care within the boundaries of healthcare systems and professional regulation. The increase in permissive legislation relating to assisted dying is challenging healthcare professionals to consider how an assisted death sits alongside accepted or ‘traditional’ healthcare practices at the end of life. Providing care in these situations can be challenging and requires emotional labour to navigate.   What this paper adds? This review allows recognition of how the emotional labour involved in providing care, and its subsequent impact, is often better recognised within assisted dying than for other acts that may be perceived as death hastening. The ‘normalising’ of care, and consequently dying, within acts that may be perceived as hastening death limits the recognition of the emotional labour required for nurses to provide care in these circumstances. When supporting a patient through an assisted death, nurses focus on optimising the experience for the patient, whereas in other acts that may hasten death, nurses’ primary focus is on the experience of those present with the patient.   Implications for practice, theory, or policy The impact on nurses’ emotional well-being due to the expectation to engage in significant emotional labour, in all care that may be perceived as death hastening, should be considered in daily practice, policy and organisational structure. The provision of emotional support should be considered for nurses when involved in the delivery of care that may hasten death, either through intentional acts (an assisted death) or unintended consequence of the care. Normalising care that may be perceived as death-hastening can impact nurses’ feelings of agency within care delivery and may need to be considered in jurisdictions with permissive assisted dying legislation as these practices embed within organisations.     Full paper available from:     https://journals.sagepub.com/doi/full/10.1177/02692163251331162   If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:  [email protected]

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• Changes in perception of prognosis in the last year of life of patients with advanced cancer and its associated factors: Longitudinal results of the eQuiPe study.

  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: [email protected]

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

  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:  [email protected]  

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