SAGE Palliative Medicine & Chronic Care SAGE Publications Ltd.

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