Sage Palliative Medicine & Chronic Care

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]

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: 

[email protected]