Sage Palliative Medicine & Chronic Care

This episode features Dr Peter May (Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, UK School of Medicine, Trinity College Dublin, Ireland).

What is already known on this topic?

• Specialist palliative care increases odds of dying outside hospital and improves patient quality of life, but this is a complex intervention and not all who might benefit receive specialist care.
• Cost-effectiveness of specialist palliative care, and the economic implications of reduced hospital deaths, is a persistent question for research and policy. Prior systematic reviews identify a lack of modelling studies as a fundamental evidence gap.

What this paper adds

• We used decision modelling, a widely-used method in health economics that has not been routinely applied in evaluating palliative care. The key strength of this approach is the capacity to combine data from different sources to estimate cost-effectiveness when there is insufficient trial data to answer the question.
• We found that both hospital-based specialist palliative care and home-based specialist palliative care for adults in England represent excellent value care, reducing the average cost per patient to the NHS while improving patient outcomes.

Implications for practice, theory or policy

• Specialist palliative care is currently accessed by less than half of people who might benefit in England. Expanding access would likely yield further cost-savings and improve outcomes for patients and families. However, mitigating current inequities in access and outcomes also requires new approaches to identifying, engaging and meeting the needs of underserved groups.
• Other countries interested in applying these methods to their own data and services can consider using our methodological templates, which we have published open access.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163261423755

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 Norah Elvidge (School of Nursing, Faculty of Health, Queensland University of Technology, Kelvin Grove, QLD, Australia. Silverchain, Melbourne, VIC, Australia).

What is already known on this topic?

• Many people with palliative care needs would prefer to be cared for and/or die at home.
• Many people will be cared for at home by specialist community palliative care services.
• Despite this, hospitalisation rates remain high for people receiving specialist community palliative care services.
• Carers face physical, emotional and financial burden caring for someone with palliative care needs at home.

What this paper adds

• Provides a deeper understanding of the contextual and individual determinants of why people receiving specialist community palliative care access unplanned hospital care.
• Provides insight into specialist palliative care carer behaviour at the end of life.
• Highlights the importance of the carer's role in decisions surrounding acute care access for people at the end of life.

Implications for practice, theory or policy

• Further research is needed to capture the perspective of people receiving specialist community palliative care regarding the reasons for unplanned hospital use.
• The number of unplanned hospital presentations for people receiving community palliative care may be reduced through the provision of better formal support for their carers.
• Examining factors contributing to unplanned hospital use supports specialist community palliative care services to refine models of care and optimise care delivery.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163261418625

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 Catriona Mayland (University of Sheffield, UK. Sheffield Teaching Hospitals NHS Foundation Trust, UK. Palliative Care Unit, University of Liverpool, UK).

What is already known on this topic?

• The disease trajectory for people with incurable head and neck cancer is unpredictable.
• This cancer subgroup has high healthcare utilisation even in the last months of life.

What this paper adds

• Patients, caregivers and healthcare professionals consistently reported systemic variability in healthcare experiences for those with incurable head and neck cancer.
• Improving access to symptom relieving medications, helping more with advocacy, and developing ways to improve caregivers' preparedness reflect areas for improvement across the disease trajectory.
• Information needs change over time, with initial overload, but then complexities relating to advance care planning developing later due to the unpredictable nature of the disease.

Implications for practice, theory or policy

• Solutions include cancer centres adopting more accessible, inclusive means of communication and providing patients and families with reliable contact points for key healthcare professionals.
• Developing strategies or interventions to improve caregivers' preparedness should incorporate both caregivers and relevant healthcare professionals to ensure the technical aspects of care can be addressed.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163261416267

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 Claudia Rossy Parés (Department of Psychology, Universitat Internacional de Catalunya, Barcelona, Spain).

What is already known on this topic?

• Research has associated forgiveness with physical, emotional and spiritual benefits in people facing the end of life.
• Health professionals often feel unprepared to talk about forgiveness with their patients.
• The role that the spiritual caregiver plays with respect to forgiveness as a need of the patient is not clear.

What this paper adds

• By offering in-depth, qualitative insights from experienced spiritual caregivers, this paper provides data of how spiritual caregivers perceive and address forgiveness as a theme at the end-of-life in the context of severe illness.
• The study identifies barriers experienced by spiritual caregivers to talking about forgiveness, and proposes resources to address them.

Implications for practice, theory or policy

• Forgiveness in palliative care should be explored and offered as a possible path toward peace within a person-centered and autonomy-respecting framework, acknowledging that not all patients wish or are ready to forgive.
• Spiritual caregivers need protected time and supportive conditions for spiritual conversations with patients, ensuring follow-up across care transitions when possible, and clear role boundaries distinguishing them from clergy when engaging in forgiveness conversations.
• Future research should include multi-faith perspectives, use diverse designs across different care settings (hospital, hospice, primary care), and integrate patients' and families' experiences to deepen understanding of forgiveness in palliative care.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163261431175

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 Amy Hutchinson (Queensland University of Technology (QUT), Centre for Healthcare Transformation, Faculty of Health, Brisbane, Queensland, Australia).

What is already known on this topic?

• Quality indicators for palliative care have been extensively researched in different populations and settings.
• A comprehensive suite of palliative care quality indicators for older people is required to inform policy and practice.

What this paper adds

• This review identified 658 unique quality indicators for palliative care for older people of which 56 indicators required a person or proxy rating, 388 indicators could be derived from healthcare records, and 214 indicators related directly to service or organisational aspects.
• There was a clear lack of quality indicators which relate to the structures of care, demonstrating an underrepresentation of the influence of organisational processes in quality outcomes.
• Indicators often emphasised a biomedical approach, overlooking the psychological, social, cultural, and spiritual aspects essential to high-quality palliative care.

Implications for practice, theory or policy

• There is a need for a more refined suite of indicators to be tested across diverse cultural, geographic and healthcare settings.
• This refined suite can then be used by health and aged care services to assess the quality of care they provide and identify performance gaps to target in quality improvement initiatives.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163251403422

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 Jo-Anne J. Kelly (Palliative Care South East, Narre Warren, VIC, Australia (Palliative Care South East, Narre Warren, VIC, Australia) and Dr Karen Aisling Griffin (Palliative Care South East, Narre Warren, VIC, Australia, Peninsula Health, Frankston, VIC, Australia)

What is already known about this topic?

• Phenobarbital loading in the adult palliative cohort for refractory symptom management has been used for many years. However, there is little evidence, nor a guideline for palliative sedation for children at home.

What does this paper add?

• An initial loading dose of phenobarbital may provide enhanced and quicker relief of refractory symptoms in the paediatric palliative care cohort receiving home-based terminal care.

Implications for practice, theory, or policy?

• Further research is required to determine the efficacy of, and guidelines for administration of, a loading dose of phenobarbital for paediatric palliative care patients in the terminal phase, presenting with intractable symptoms.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163251365440

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 Isabel S. van der Meer (Department of Research and Development, The Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands).

What was already known?

• The diagnosis of advanced cancer and subsequent treatments can have negative implications for sexual health
• Changes in sexual health of patients with advanced cancer emerge from physical, mental and emotional transformations, but the importance of sexual health remains relatively unchanged.
• The majority of healthcare professionals find it challenging to discuss sexual health in the context of palliative care.

What this paper adds?

• Patients and their partner remain relatively stable in most aspects of sexual health in the last 18 months of the patients' life.
• Patients' sexual desire significantly decreases in their last 18 months of life.
• Patients with worse physical functioning and/or prostate cancer reported a greater decline in most aspects of sexual health.
• Patients' sexual desire, activity and satisfaction were individually associated with the quality of life in the last 18 months of life.

Implications for practice, theory, policy, or future research?

• Recognizing sexual health as an integral component of overall quality of life is essential.
• Discussing sexual health as healthcare professionals is important. Using short PROM's exploring the patient's need to discuss sexual health could facilitate the initiation of such a discussion.
• Future research is essential to examine whether patients perceive decreased sexual health as a concern and whether the meaning of sex changes at the end-of-life.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163251385774

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:

[email protected]