SAGE Palliative Medicine & Chronic Care

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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:

a.nwosu@lancaster.ac.uk

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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:

a.nwosu@lancaster.ac.uk

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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:

a.nwosu@lancaster.ac.uk

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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:

a.nwosu@lancaster.ac.uk

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This episode features Amy Brown (Marie Curie Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK. Swansea University Medical School, Swansea University, Swansea, UK)

What is already known about the topic?

The third World Health Organization Global Patient Safety Challenge ‘Medication without harm’, emphasises the need for improved infrastructure through better reporting practices and cross-organisational learning from adverse events and near misses.
Medication is implicated in one-fifth of serious palliative care patient safety incidents, with approximately 25% of these incidents involving continuous subcutaneous infusions.
Inadequate analysis of continuous subcutaneous infusions as safety-critical, risk-prone interventions dependent on complex structural and human factor issues is a lost opportunity for learning.

What this paper adds?

Continuous subcutaneous infusion incidents occur across all settings including the home, hospices and hospitals and particularly after the transfer of patients between settings with harm present in nearly three-quarters of reports.
Multiple points of system failure were identified in continuous subcutaneous infusion incident reports including monitoring and supply (405, 31%), administration (383, 29%) and prescribing (268, 20%); recurring contributory factors included discontinuity of care within and between care settings, inadequate time, inadequate staffing and unfamiliarity with protocols.
Narrative descriptions of psychological and social harm, alongside physical harm risk, are not being adequately recognised or responded to through existing approaches to measure harm in palliative care, hindering learning in practice

Implications for practice, theory, or policy

The structural changes needed to minimise harm and maximise safety in palliative care are likely to be replicated in other parts of the world where patient safety reporting practices are less well established, for example, shifting from focussing on lack of experience and competency at an individual practitioner-level to addressing deficits in working environments and infrastructures for care provision.
When patients move between care locations, more attention should be given to the timeliness and effective transfer of medication management (e.g. if someone is discharged from hospital to a care home that rarely uses continuous subcutaneous infusions for palliative care, this needs to be preceded by refreshing staff skills and ensuring they can access further community support if needed).
Professional training and further research are needed to increase quality of reporting of psychological and social harms (including for families and other stakeholders involved) to facilitate organisational learning and pinpoint precise targets for further improvement.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241287639

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

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This episode features Dr Masanori Mori (Division of Palliative and Supportive Care, Seirei Mikatahara General Hospital, Hamamatsu, Japan)

What is already known about the topic?

As in Western countries’ health-care systems, advance care planning is being increasingly implemented in Asian ones, but consensus on its definition and recommendations based on Asian culture are lacking.
In high-context, Confucian-influenced Asian societies, explicit conversations about end-of-life care with patients are not always the norm. Family involvement is crucial in decision-making. Health-care providers in Asia uncommonly involve patients in advance care planning, partly due to their lack of knowledge and skills in advance care planning, personal uneasiness, fear of conflicts with families and their legal consequences, and the lack of a standard system for advance care planning.

What this paper adds?

A key domain not previously highlighted in Western Delphi studies is “a person-centered and family-based approach” that facilitates families’ involvement to support an individual’s engagement in advance care planning and the attainment of the individual’s best interest through shared decision-making. Treatment preferences in Asian contexts are often shaped by relationships and responsibilities toward others, with families and health-care providers supporting individuals to meaningfully participate, even in the presence of physical or cognitive impairments.

Implications for practice, theory, or policy

Our definition and recommendations can guide clinical practice, education, research, and policy-making in advance care planning, not only in the Asian sectors included in our study, but also in regions with Asian residents and other areas where implicit communication and family-centered decision-making are valued.
Our findings, combined with the existing evidence, will help future investigations to develop culturally sensitive advance care planning interventions, identify appropriate outcomes, and build an infrastructure where Asian individuals receive care consistent with their values, goals, and preferences.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241284088

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

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This episode features Professor Raymond Voltz (Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany; Center for Integrated Oncology Aachen Bonn Cologne Duesseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany; Center for Health Services Research, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany)

What is already known about the topic?

The wish to hasten death is frequent in patients with serious illness and can associated with immense burden, potentially leading to suicidality or a wish for assisted suicide.
Many patients retain their will to live throughout their entire illness trajectory, even in palliative stages and at the end of life.
In some studies, both phenomena are found to be negatively correlated, yet simultaneous expressions of both a high wish to hasten death and a high will to live are possible.

What this paper adds?

We confirm the negative correlation between the wish to hasten death and the will to live over the observation time of 4–6 week after an open conversation in the group analysis.
However, there was a substantial number of outliers of this pattern with clinically relevant changes in both phenomen.
Three illustrative cases show that factors like patient personality and individual situation influence uncommon trajectories of wish to hasten death and will to live.

Implications for practice, theory, or policy

Clinical and research assessment should be aware of the fact that a wish to hasten death does not necessarily imply a low will to live and vice versa, thus both phenomena should be addressed simultaneously and proactively.
The application of secondary analysis using an integrative mixed-methods-approach of validated questionnaires and in-depth interviews might be effective to reveal the nature of ambiguous or seemingly paradoxical phenomena such as double awareness of wish to hasten death and will to live.
As the double awareness of the wish to hasten death and the will to live is common at the end of life, but can be hard to endure, health professionals should develop an open and accepting attitude to support patients in dealing with it.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241269689

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

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This episode features Jodie Crooks (Marie Curie, London, UK) and Dr Briony Hudson (Marie Curie, London, UK; Marie Curie Palliative Care Research Department, University College London, London, UK).

What is already known about the topic?

Research into palliative care for people experiencing homelessness is complex and requires input from people with lived experience.
There is a dearth of evidence and/or guidance in how to support researchers to involve people with lived experience of homelessness in palliative care research.

What this paper adds?

Co-production of palliative and end-of-life-care research with people with lived experience of homelessness needs to be transparent, prioritise building rapport, be trauma-informed and person-centred.
Reimbursement should always be offered to co-producers. The method of reimbursement should consider the context of involvement (i.e. the individual’s circumstances) where possible.
There is a need to evidence the impact of involvement, to facilitate a change in research culture which prioritises hearing the voices of different groups.

Implications for practice, theory, or policy

Involving people with lived experience of homelessness can help researchers to identify unknown unknowns within the field of palliative care: it can validate, enhance and direct research to the intricacies of their experiences.
The TIFFIN recommendations provide guidance for how to achieve co-production within this field in a trauma informed way.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241259667

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

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This episode features Suning Mao (State Key Laboratory of Oral Diseases & National Center for Stomatology & National Clinical Research Center for Oral Diseases, West China Hospital of Stomatology, Sichuan University, Chengdu, China)

What is already known about the topic?

Home-based palliative care has grown in popularity, but challenges in coordinating care and communication between hospital and home settings can impact transitions, healthcare consumption, care quality, and patient safety.
Electronic symptom monitoring systems in home-based palliative care utilize telemedicine to remotely collect real-time symptom data, offering flexible feedback to patients and healthcare providers during clinical consultations.

What this paper adds?

Most patients positively engage in electronic symptom monitoring, potentially enhancing quality of life, physical and emotional well-being, and symptom scores without significant cost increase.
Definitive conclusions regarding the impact of electronic symptom monitoring on outcomes such as survival, hospital admissions, length of stays, emergency visits, and adverse events were constrained by substantial variability in reported data or inadequate statistical power.

Implications for practice, theory, or policy

Future high-quality randomized controlled trials or large-scale real-world studies on electronic symptom monitoring in home-based palliative care should assess its short-, medium-, and long-term effects on both cancer and non-cancer populations.
Employing globally recognized patient-reported outcome scales like the EORTC Core Quality of Life Questionnaire and the 36-item Short Form Health Survey guarantees reliable and generalizable results in accurately assessing symptoms and enabling meta-analysis.
Incorporating electronic symptom monitoring into home-based palliative care should prioritize accessibility, feasibility, and patient acceptance, particularly in uncertain clinical scenarios.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163241257578?icid=int.sj-abstract.citing-articles.8

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

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This episode features Professor Scott Murray (Primary Palliative Care Research Group, Usher Institute, The University of Edinburgh, Edinburgh, UK).

We are delighted with this special edition, and that Palliative Medicine has turned its focus on this important topic. Primary Palliative Care, delivering palliative care by trained primary care professionals can help meet the outstanding challenge of bringing accessible palliative care to everyone with a life-threatening illness. This special edition features a number of new studies highlighting the great potential to deliver palliative care in primary care. It includes articles about how palliative care is integrated in higher and lower income countries, including refugee settings. It reports new education and service models for general practitioners and paramedics, and the use of electronic symptom monitoring. Also two studies explore that “less may be more” at the end of life - a review of hospital admissions and influencing deprescribing in the last phase of life in primary care. Listen to Professor Scott Murray provide more details of the Editorial and details of the articles included in the special edition.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163241271049

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

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Primary Palliative Care - onwards and upwards!

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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

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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

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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

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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

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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

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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

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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

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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:

a.nwosu@lancaster.ac.uk

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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:

a.nwosu@lancaster.ac.uk

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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:

a.nwosu@lancaster.ac.uk

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This episode features Dr Nivedita Ashok, (University College London, London, UK).

What is already known about the topic?

Individuals with intellectual disability or serious mental illness have high rates of mortality due to physical comorbidities.
These populations have specific needs that should be met to provide optimum palliative care and maintain optimum mental healthcare at the end-of-life.
While research exists describing the problems these populations face, little is known about how to improve care for them.

What this paper adds?

By focusing on lived experiences of patients/service users, carers and healthcare professionals this paper synthesises existing evidence into multivoiced perspectives on what works, does not work, plus challenges and opportunities for improvement.
Assumptions and misunderstandings about the role of mental capacity assessment to appropriately involve the patient in decision-making are common, while adapting training for palliative care staff to address concerns and beliefs about mental illness helps to avoid diagnostic overshadowing.
Professionals need help to work across divides between physical and mental healthcare services, so people can receive palliative care in familiar locations and/or from familiar people.

Implications for practice, theory, or policy

A significant research deficit exists regarding provision of optimal palliative care to people with psychosis, personality disorders, bipolar affective disorder and depression.
Assessing capacity may be optimally achieved by involving professionals across specialities and organisations.
Proactive identification of service arrangements for care needs of persons with serious mental illness will help optimise care.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163231175928

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

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This episode features Caitlin Spooner (Marie Curie Palliative Care Research Department, University College London, London, UK).

What is already known about the topic?

Currently, there is no gold standard for evaluating how different methods of prognosticating in advanced cancer impact on patient care.
Prognostic models are principally evaluated by their statistical performance, determining their discrimination and calibration. However, before any prognostic model can be recommended for use in clinical practice, it is necessary to demonstrate whether or not it has a beneficial impact on patient care.
There is a lack of consensus among stakeholders about how to assess the impact of prognostication in advanced cancer, with prognostic studies varying in the outcomes they select.

What this paper adds?

We identified a wide variety of outcomes and measures used in published studies, which makes inter-study comparability problematic.
Our findings highlight the widespread effect that prognostication in advanced cancer has on patients and informal caregivers.
The lived experiences of patients and informal caregivers regarding prognostication in advanced cancer are not always represented in the outcomes quantitative prognostic studies measure.

Implications for practice, theory, or policy

Further research is needed to identify and prioritise outcomes to measure the impact of prognostication in advanced cancer.
Patients’ and informal caregivers’ experiences and perspectives should always be incorporated when evaluating the impact of prognostication.
Outcome selection in prognostication studies needs to be more consistent and standardised.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163231180912

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

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This episode features Dr Amara Nwosu (Lancaster Medical School, Lancaster University, Lancaster, UK; Liverpool University Hospitals NHS Foundation Trust, Liverpool, UK; and Marie Curie Hospice Liverpool, Liverpool, UK). The podcast is an overview of a published editorial on telehealth in palliative care. Dr Nwosu highlights the unrealised potential of palliative care telehealth, and discusses the opportunities and challenges associated with telehealth. Finally, Dr Nwosu describes the next steps needed for research evaluating palliative care telehealth.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163231182461

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

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This episode features Dr Gursharan K Singh (Centre for Healthcare Transformation, Faculty of Health, Queensland University of Technology (QUT), Brisbane, QLD, Australia).

What is already known about the topic:

The degree to which individuals access and use palliative and end-of-life care services varies across communities and countries.

What this paper adds:

This study found that the South Asian community (in Bradford, UK) are currently not ready to engage with palliative and end-of-life care services despite local initiatives to improve awareness. They are at the “pre-planning stage” (see Table 1) about end-of-life care options and of the services that are available to them.
This study also found evidence that the services that aim to support people from minoritised ethnic communities at the end-of-life are not ready to address ethnic inequities.
Such services were found to have: (i) a narrow focus during advance care planning, (ii) poor integration of voluntary and community services (iii) and limited understanding of what a good death looks like for people from different cultural and religious backgrounds.

Implications for practice, theory or policy:

This study highlights the importance of assessing the degree to which both the community and the health and social care systems are ready to incorporate new initiatives so they are effective and successful in addressing (and not strengthening) existing inequities.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163221146587

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

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This episode features Hannah May Scott (Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, Cicely Saunders Institute, King’s College London, London, UK).

What is already known about the topic?

Although spiritual concerns are recognised as a core component of palliative care for children, there is a paucity of primary data.
Self-report data from children is rare, and existing evidence is largely proxy data from parents or health and social care professionals and mainly focused on the religious aspect of spiritual care for cancer patients.

What this paper adds?

Specific spiritual concerns among children with a range of life-limiting and life-threatening conditions and their families (parents and siblings) included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion.
This work broadens understanding of the spiritual domain for these children beyond religious needs to existential and value-based spiritual concerns.
Recognition of the way in which children conceptualise spirituality and being able to identify their spiritual concerns is essential for child- and family-centred holistic palliative and end-of-life care.

Implications for practice, theory, or policy

Professionals can optimise children and family’s wellbeing through identification of the things that provide meaning for them, and working together to set goals and actions towards achieving them.
Such concerns must be assessed beyond religious considerations.
Simple tools and training to support professional may be useful in implementing this.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163231165101

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

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This episode features Dr Jenny Lau (Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, ON, Canada; Department of Family and Community Medicine, University of Toronto, Toronto, ON, Canada; Division of Palliative Care, University Health Network, Toronto, ON, Canada) and Dr. Daniel Buchman (Everyday Ethics Lab, Centre for Addiction and Mental Health, Toronto, ON, Canada; Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada; University of Toronto Joint Centre for Bioethics, Toronto, ON, Canada)

What is already known about the topic?

• Communicable disease epidemics and pandemics, such as the COVID-19 pandemic, intensify the healthcare inequities encountered by people who use drugs.

• Pandemics are expected to increase the demand for palliative care resources.

• People who use drugs with life-limiting illnesses experience inequities in access to palliative care.

• There is limited evidence beyond the HIV/AIDS context to guide decision-makers on the provision of palliative care for people who use drugs during communicable disease epidemics and pandemics.

What this paper adds?

• This paper demonstrates that there is limited knowledge about how to provide palliative care for people who use drugs during epidemics and pandemics other than HIV/AIDS.

• We identified enablers and barriers to equitable palliative care access, which include organizational barriers, issues related to stigma and structural inequity, and access to opioids and other substances

• Our findings build on past research that seeks to integrate the premises of health equity within palliative care so health systems can be better prepared for future epidemics and pandemics.

Implications for practice, theory, or policy

• The findings from our scoping review provides accessible and relevant evidence for healthcare professionals and decision-makers (e.g. policy makers, administrators) that can be applied to the COVID-19 pandemic response efforts and potentially future epidemics and pandemics.

• More research is needed about palliative care access, policies, and programs for people who use drugs during communicable disease epidemics and pandemic beyond the HIV/AIDS context.

Full paper available from:

https://journals.sagepub.com/doi/10.1177/02692163221143153

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

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This episode features Dr Rachael Moss (Bradford Institute for Health Research, Bradford Teaching Hospitals Foundation Trust, Bradford, UK).

What is already known about the topic:

The degree to which individuals access and use palliative and end-of-life care services varies across communities and countries.

What this paper adds:

This study found that the South Asian community (in Bradford, UK) are currently not ready to engage with palliative and end-of-life care services despite local initiatives to improve awareness. They are at the “pre-planning stage” (see Table 1) about end-of-life care options and of the services that are available to them.
This study also found evidence that the services that aim to support people from minoritised ethnic communities at the end-of-life are not ready to address ethnic inequities.
Such services were found to have: (i) a narrow focus during advance care planning, (ii) poor integration of voluntary and community services (iii) and limited understanding of what a good death looks like for people from different cultural and religious backgrounds.

Implications for practice, theory or policy:

This study highlights the importance of assessing the degree to which both the community and the health and social care systems are ready to incorporate new initiatives so they are effective and successful in addressing (and not strengthening) existing inequities.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163221146587

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

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This episode features Isabel Vandenbogaerde (End-of-life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium).

What is already known about the topic:

Involvement of family carers in advance care planning conversations is crucial for end-of-life decision-making.
Family carers are willing to engage in advance care planning conversations, but experience barriers in doing so.
Healthcare professionals may play an important role in supporting family carers in these advance care planning conversations.

What this paper adds:

About half of the family carers have an advance care planning conversation with their relative in the final 3 months of life.
Family carers were more likely to engage in advance care planning in case they were 55 of age or younger, had a medical degree (e.g. nurse or doctor), and when specialist palliative care services were involved
The majority of family carers received advance care planning conversation support from a healthcare professional by performing the advance care planning conversation together.

Implications for practice, theory or policy:

Healthcare professionals can play an important role in introducing tools, website or information campaigns of advance care planning.
Healthcare professionals may consider strategies to support and empower family carers to conduct advance care planning conversations outside the clinical context.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/02692163221135032 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

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This episode features Dr Joyce Chung and Weilin Chen (School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Kowloon, Hong Kong SAR, China).

What is already known about the topic:

End-of-life communication can improve patients’ quality of life, ease the bereavement experience, raise care satisfaction and reduce the utilisation of aggressive and expensive medical care.
Healthcare professionals’ perceived barriers, such as fear of causing distress, impede the delivery of end-of-life conversations in a professional, sensitive and appropriate manner.
The communication strategies available to healthcare professionals for discussing end-of-life issues with terminally ill patients and their families have not yet been systematically summarised.

What this paper adds:

This review systematically examines, summarises and presents recommended end-of-life communication strategies for healthcare professionals.
It organises these communication strategies into seven themes that should be considered when delivering end-of-life conversations.
This review highlights that further research is needed to explore patients’ and families’ perspectives on healthcare professionals’ end-of-life communication strategies; and available strategies in non-Anglo-Saxon countries.

Implications for practice, theory or policy:

The valuable strategies outlined in this review will assist and support healthcare professionals when having end-of-life conversations with their patients.
Further training and education plans should be developed and implemented based on the study findings.
Further research is needed to explore patients’ and their families’ experiences and views on end-of-life communication strategies used by healthcare professionals; and practical strategies to use in non-Anglo-Saxon countries.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/02692163221133670 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

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This episode features Suzanne Smith (Master of Palliative Care student, Flinders University, Australia; Victorian Paediatric Rehabilitation Service, Australia), Dr Megan Doherty (University of Ottawa, ON, Canada; Children’s Hospital of Eastern Ontario, Ottawa, ON, Canada) and Dr Mostofa Kamal Chowdhury (BangabandhuSheikh Mujib Medical University, Dhaka, Bangladesh).

What is already known about the topic:

The majority of children who need, but cannot access essential palliative care and pain relief, live in low-and middle-income countries.
An estimated 10 million Bangladeshi children live with a disability and associated serious health-related suffering that may lead to premature death.
Children from low- and middle-income countries are underrepresented or absent from existing palliative care reviews.

What this paper adds:

This review illuminates the extreme health-related suffering experienced by children with disability and their families in Bangladesh in the physical, social, and emotional/spiritual domains.
Financial hardship, stigma, limited knowledge and compromised children’s rights impede access to healthcare in Bangladesh.
Children with disability living in an urban marginalised society and Rohingya children with disability living in refugee camps in Bangladesh may receive care commensurate with the International Association for Hospice and Palliative Care revised definition of palliative care

Implications for practice, theory or policy:

This review identifies innovative and novel models of effective service delivery, outside of mainstream healthcare settings, which combine both palliative care and rehabilitation principles.
Further strengthening Child Rights in Bangladesh will reduce serious health-related suffering.
Collaborations between Bangladeshi and International researchers are productive and should continue to inform future service development.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/02692163221136896 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

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This episode features Dr Richard Green (University of Surrey, Guildford, UK).

Multimorbidity is increasing substantially worldwide, is associated with greater use of healthcare services, lower quality and quantity of life, and rises with age. Older people with multimorbidity are expected to become the main recipients of palliative care in the coming decades; however, there is limited evidence of their specific needs. Older people’s voices are vital to understanding their own palliative care needs and priorities, but these voices are hampered by structural inequities in service provision.

This is the first paper reporting on the expressed palliative care needs of community-dwelling older people with multimorbidity.
The most common palliative care needs identified across need domains were pain, function, unhappiness, staying socially connected, future planning, person-centred care and having meaning and purpose in life. This paper highlights different priorities between the reported items in tools used to collect palliative care need and needs expressed by older people with multimorbidity.

Further evidence is required to understand need to support service changes required to provide accessible, person-centred care to this underserved population.
Multidimensional palliative care tools require refining to encompass complexity beyond the standard domains of palliative care. Community palliative care provision should involve the integration of care across sectors and recognise the diversity of needs across the continuum of living and dying well for older people with multimorbidity

Full paper available from:
https://journals.sagepub.com/doi/full/10.1177/02692163221118230

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

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This episode features Dr Andrew Page (Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK).

Cancer pain is common, extremely debilitating, and undertreated worldwide. We do not know if non-steroidal anti-inflammatory drugs (aka NSAIDs or “anti-inflammatories”) are effective in managing cancer pain of any type. To further scientific understanding, UK palliative care doctors advocate a pragmatic trial to determine the role, if any, of NSAIDs as opioid adjuncts for treating cancer-induced bone pain.

Numbers treated for cancer-induced bone pain at a single regional radiotherapy centre (478 per year) support the feasibility of trial recruitment. Considering eGFR and contraindicating co-morbidities, two-thirds could be suitable for NSAID prescription if proven efficacious. Suitability for NSAID prescription reduces with age, with the proportion unsuitable increasing in those over 65 years old.

Recruitment to a future trial of NSAIDs in the management of cancer-induced bone pain appears feasible, particularly if multiple recruitment centres are used. Demonstrating feasibility allows the planning of a definitive clinical trial to determine the efficacy of NSAIDs in this patient group. Without a definitive clinical trial, the question remains: are effective analgesics being underutilised in cancer pain management, or are ineffective medications increasing the risk of side effects in an already co-morbid cancer population?

Full paper available from:
https://journals.sagepub.com/doi/full/10.1177/02692163221122263

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

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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 (<6 months).

Little is known about how the burden of severe grief during the pandemic compares with pre-pandemic times, and whether the cause of death during the pandemic affects the grief experience.

This prospective, matched cohort study shows that almost 30% of bereaved family members experience severe grief during the pandemic. This prevalence is higher than reported pre-pandemic rates (2%–3%), and that the prevalence was not affected by the cause or the circumstances around the death.

There is an elevated risk of severe grief among family members of people who experience bereavement during the pandemic period, even if their family member died before the pandemic itself.

The severity of grief may not be affected by factors that normally mitigate severity of grief, such as being present at the time of death.

There is an urgent need for resources to identify and support people who lose loved ones during the COVID-19 pandemic.

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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 right patient at the right time involves existential and ethical concerns which may impact healthcare professionals’ willingness to identify patients and offer serious illness conversations. Further research is needed on how health care professionals’ values and attitudes influence the identification process.

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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 must be developed. Implementing adequate palliative care for Muslim minorities requires sustainable collaboration with imams and their congregations.

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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 well-being and a decrease in anxiety and depression. Low-threshold opportunities that fulfil psychosocial needs beyond medical treatment and focus on confronting end of life should be implemented.

The opportunity to confront the end of life and address existential questions should become an area of greater focus within patient-centered care. The variety of approaches of confronting the end of life and their effects need to be investigated, as do the underlying mechanisms of action. In light of the scarcity of actual evidence, the focus should be particularly on individual coping strategies.

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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 for people identified for palliative care support in the community will provide safer, more responsive, and cost-effective care. Rapid access to unscheduled care via effective NHS telephone services and out-of-hours primary care assessment can reduce unwarranted ambulance calls, attendances at emergency departments and hospital admissions. Public education should encourage and support patients and carers living with advanced illness to access the unscheduled care best suited to their needs. Routine clinical datasets for most NHS unscheduled care services lack a variable to record patients in the community identified for palliative care.

Full paper available from: https://journals.sagepub.com/doi/10.1177/02692163211066256

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

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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 an open and respectful atmosphere of conversation about existential issues at the end of life including possible desire to die.

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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 research to investigate its actual effect among the dying and their families. The lack of regulation of death doulas may imply a lack of acknowledgement of this role, calling for more efforts from diverse stakeholders. A better understanding of this newly emerged care model could pave the way for its recognition and integration into existing healthcare and social care systems.

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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 lifespan. New recommendations also have implications for service quality improvements including enhancing open visiting, availability of essential medicines, better information exchange, including digital medical records and access to specialist equipment.

Future research and clinical care needs to include multiple domains to assess quality improvements in palliative care.

Full paper available from:
https://journals.sagepub.com/doi/10.1177/02692163221074547

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

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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 study.

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This episode features Professor Scott Murray (Primary Palliative Care Research Group, University of Edinburgh, Scotland, UK).

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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, cognitive, and social impairments viewed as states worse than death help reveal patients’ core values and preferences for care.

Patients identified important barriers to using avoidance of states worse than death to guide medical decisions, limiting its applicability as an outcome measure. Asking about states worse than death could serve as a novel and efficient values elicitation tool.

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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 reduce avoidable hospital admissions where this is the patient’s preference. The review identified untimely access to documented wishes, family discordance and the medico-legal ambiguity associated with palliative paramedicine as key barriers preventing paramedics from adopting a palliative approach to care. Key enablers highlighted within the review include strengthening communication and support channels with multidisciplinary teams, targeted palliative care training for paramedics, partnering in care with families and palliative care specific clinical practice guidelines to broaden the current scope of practice.

This review underscores the opportunities for health services to consider paramedic involvement in integrated models of community palliative care delivery, especially as an adjunct support in palliative emergencies in collaboration with other services. Further research developing and evaluating systems to enable paramedics better access to patients documented palliative care plans, targeted palliative care training programmes and palliative care specific clinical practice guidelines is needed.

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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 time, coping strategies and influencing factors become intertwined; impacting on professional and personal development throughout the career.

Palliative care professionals coping strategies evolve and change, being intrinsically related to a progressive and greater response capacity with respect to emotionally demanding situations. Coping mechanisms in palliative care imply a personal and professional development, extending beyond the management of emotions and problems, or the separation between personal and environment aspects. The professional development is a central pillar in training on providing healthcare to others and can be promoted through training self-awareness. The coping process seemed to be linked to the development of professional careers in palliative care.

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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 and deliver cancer care. The health and wellbeing of carers needs to be acknowledged and further efforts made to include them in clinical consultations.

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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 such as feelings of vulnerability, stigma, anxiety, or fatigue provoked by arts engagement.

Recommendations for future research include: 1) consistency in methods and reporting; 2) inclusion of wider perspectives; and 3) key considerations for adapting the arts by health condition and art form to address complexity of arts engagement in palliative care. This review is a step toward aggregating existing evidence to advance knowledge regarding
the full potential of arts engagement and to make the arts more widely available to patients in palliative and end-of-life care.

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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 their level of surprise.

Our study suggests that the threshold probability, before a death causes surprise, varies across six European countries. Many GPs (including those with specialist palliative care training) are inconsistent about the probability of death that elicits surprise.

Further research is needed to understand how the Surprise Question is used in practice, and whether consistency and accuracy could be improved by modifying the Surprise Question, or by training GPs in its use.

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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 with patients’ faith and their families’ or physicians’ wishes; and (c) about the presence of barriers to it (e.g. complexities of future planning, socioeconomic dependence, and the unreadiness of the healthcare system).

Initial steps toward engaging Asian patients in advance care planning should include: (a) an exploration of their understanding of their disease; and (b) the correction of common misperceptions through education on what advance care planning entails. Advance care planning for Asian patients needs to accommodate: (a) patients’ widely differing beliefs on it; (b) their preferences regarding the way in which values are communicated, that is, when and by whom; and (c) whether or not it is documented.

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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 of anticipatory medications for long periods of time may compromise patient safety unless robust systems are in place to review their continued appropriateness and safe use.

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This episode features Dr Markus Krause (Institute of General Practice and Family Medicine, Jena University Hospital, Jena, Germany) and Dr 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 gastrostomy (PEG) within the last days of life. These results hold equally for cancer patients as well as non-cancer patients. Only for parenteral nutrition, we found a possible indication of oversupply in cancer patients (excepting those with gastrointestinal cancer) within specialized palliative homecare.

The potential of palliative homecare, particularly of specialized palliative homecare, to reduce potentially aggressive interventions at the end-of-life deserves more attention in healthcare and health politics. Future studies should investigate which elements of specialized palliative homecare are effective and can be integrated into primary palliative care, where appropriate.

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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.

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This episode features Dr Eleanor Wilson (Nottingham Centre for the Advancement of Research in End of Life Care, School of Health Sciences, University of Nottingham Medical School, Queen’s Medical Centre, Nottingham, UK)

Managing medications at home can be a complex task involving ordering, collecting, organising, storing and taking medications correctly. Medication work must take place alongside ongoing management of household tasks, the physical and emotional labour of caring for someone who is dying and the impending loss of that person. Family caregivers are often assumed to be willing and able to take on the role of supporting patients to manage their medications at home, yet many are themselves older adults with serious health problems or adult children with many other conflicting roles and responsibilities.

Knowledge of the ways that managing medications adds to the considerable burden of care and work that must be undertaken when someone is seriously ill and dying at home. Family caregivers are increasingly expected to undertake complex and technical medication tasks formerly carried out by professionals, but with little if any training, supervision or support; this trend has been exacerbated by COVID-19. The work of managing medications is critical to enabling patients to remain at home at the end of life.

Health care professionals will benefit from a greater understanding of the complexities of medications management undertaken by patients and families in order to identify and tailor the support they can provide. Substantial reduction in the complexity and bureaucracy of Health and Social Care services is needed for them to be navigable for patients and families managing medications at the end of life. The lack of presence of Community Pharmacists in this research suggests there may be a greater role for them in supporting patients and families to manage medications at home.

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This episode features Florence Reedy (Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK).

Chronic breathlessness is a prevalent symptom amongst patients with advanced medical conditions. In combination with disease-modifying therapies and non-pharmacological interventions, regular low dose opioids may safely reduce moderate to severe chronic breathlessness due to advanced medical conditions. Implementation of opioids for chronic breathlessness in clinical practice varies widely.

Clinicians’ and patients’ fears of opioids causing respiratory depression, addiction and regulatory scrutiny are significant barriers in the use of opioids for breathlessness. Education and information are necessary, but insufficient as a sole strategy, to improve implementation of opioid use for this indication. Clinicians’ interactions with patients and their families strongly influence acceptance of, and adherence to opioid treatment regimens for chronic breathlessness.

An agreed protocol for opioid initiation, titration and monitoring for use by clinicians in conjunction with agreed clinical guidelines may improve both their knowledge and confidence around opioid use for the symptomatic reduction of chronic breathlessness. Additional research on patients’ and carers’ experiences of opioids for chronic breathlessness is necessary to inform better implementation of opioids into clinical practice.

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This episode features Baby Foo (School of Psychology, The University of Sydney, Sydney, NSW, Australia) and Dr Michele Wiese (School of Psychology, Western Sydney University, Penrith, NSW, Australia).

With advancing age and the experience of life-limiting illness, people with intellectual disability need equitable access to effective palliative care. Palliative care staff experience unique challenges when caring for people with intellectual disability, such as communication barriers, which can make it more difficult to address their needs. People with intellectual disability are not routinely included in conversations about their dying and death in primary and residential care settings, unless they instigate these discussions.

This study highlights that specialist palliative care staff do not consistently talk with people with intellectual disability about their dying and death. Conversations about dying and death are influenced by the (1) perceived capacity of the person with intellectual disability, (2) experience and expertise of palliative care staff, (3) the relationship between palliative care staff and dying person, and (4) values of palliative care staff and other caregivers.

Urgent policy and practice changes are required to address misinformation and assumptions about people with intellectual disability, including the development of guidelines regarding communication about dying and death with people with intellectual disability in palliative care. Specialist palliative care services need to prioritise staff training for those working with this patient group, and focus on developing knowledge and skills in communication strategies relevant to people with intellectual disability. Future research should focus on the needs of people with intellectual disability and their caregivers in palliative care across all levels from policy to practice.

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This episode features Daisy McInnerney (Marie Curie Palliative Care Research Department, Division of Psychiatry, UCL, London, UK).

Emotional disclosure -based interventions can improve psychological and physical wellbeing in general populations. A range of emotional disclosure-based interventions exist, but evidence of their efficacy in palliative care is mixed; it is not clear in which forms they may be effective or most effective, and on which outcome. Trials have been limited in the extent to which they have tailored the intervention for people with advanced disease.

To our knowledge, this is the first scoping review to systematically map the characteristics of emotional disclosure-based interventions that have been tested in people with advanced disease. By grouping intervention characteristics into classes within operative domains and mapping these to outcomes, we provide a picture of which intervention forms may be most promising to pursue in future research. Disease stage, environment, flexibility in delivery and topic, clarity of instructions and staff training are identified as important factors to consider when tailoring emotional disclosure based interventions for people with advanced disease.

The review provides an exemplar approach to scoping literature to inform complex intervention development and evaluation in cases where pre-existing findings are mixed. The review highlights the need for researchers to report key facilitators and barriers they find in intervention implementation and efficacy when presenting results. Researchers should consider the recommendations made in this review to inform development and evaluation of emotional disclosure-based interventions tailored for people with advanced disease.

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This episode features Dr Liz Jamieson (Research Department of Practice and Policy, University College London School of Pharmacy, London, UK).

Oral morphine is the recommended first line treatment for breakthrough pain. Intranasal diamorphine is an effective, rapid onset, well tolerated treatment for use in Accident and Emergency (ED) for trauma patients but lacks study in paediatric palliative care. It is often assumed that large scale clinical trials are not feasible in a paediatric palliative care population.

Highlights the variation in experience of use of transmucosal diamorphine for breakthrough pain. Reports clinicians’ experience of the benefits of transmucosal diamorphine in the absence of data for breakthrough pain in children receiving palliative care and highlights their concerns in regard to the feasibility of running a randomised controlled trial of oral morphine versus transmucosal diamorphine. Evidence that many of the identified barriers to wider use of transmucosal diamorphine could be overcome by offering education and undertaking research, potentially leading to a licensed preparation.

Clinicians identified clinical scenarios where transmucosal diamorphine may be preferable but identified several current barriers to its use. Access to a safe and effective preparation of transmucosal diamorphine would provide a range of options with which clinicians could flexibly target breakthrough pain in different clinical scenarios. This adds to the case for undertaking research in this population despite perceived challenges.

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This episode features Laura Health
(Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK).

COVID-19 has a mortality of between 1% and 2% and is the deadliest pandemic in living memory. The elderly, and those with pre-existing conditions tend to be most vulnerable to severe disease and death. Common symptoms experienced at the end of life include breathlessness and agitation/delirium. Care of those dying of COVID-19 is an understudied aspect of the pandemic.

This paper is the first review of international studies describing pharmacological symptom management of adult patients dying of COVID-19. Our thorough search found only seven papers that documented pharmacological symptom management of this patient cohort, highlighting the lack of research in this area.

A higher proportion of patients required continuous subcutaneous infusions for medication delivery than is typically seen at the end of life. Modest doses of commonly used end of life medications were required for symptom control. There was a lack of information about how effectiveness was measured, and whether medications used effectively alleviated symptoms.

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This episode features Benjamin Thomas

(Palliative Care Service, Illawarra Shoalhaven Local Health District, Warrawong, NSW, Australia).

Terminal delirium is a common symptom at the end of life, causing distress to patients and families. Traditional management for terminal delirium requires sedation, which limits interaction and rousability.

This study is the first to report on the use of dexmedetomidine for the treatment of terminal delirium in palliative care, in a single arm open-label study. Dexmedetomidine, delivered by subcutaneous infusion, decreases delirium as measured by standardised tools, with increased patient interaction and rousability. Patients treated with dexmedetomidine are able to self-report comfort at the end of life, reassuring clinicians and families.

Results from this study support further research into the use of dexmedetomidine in palliative care, particularly in comparison with standard care to determine efficacy. Family comfort with rousability at the end of life requires further exploration.

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This episode features Dr Lucy Selman (Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK).

Twitter is a rich repository of data reflecting contemporaneous public opinion. The idea of dying alone is contrary to the concept of a ‘good death’ in many cultures, and not being able to say goodbye is a known risk factor for poor bereavement outcomes. During the COVID-19 pandemic, many bereaved people have been unable to be present when their loved one died due to setting-specific infection control restrictions that vary across regions and institutions.

Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss during the COVID-19 pandemic, with the challenges they experienced before the death compounded by a lack of social support and disrupted rituals afterwards. A sense of political neglect or mistreatment was frequently expressed, alongside calls for action, but Twitter users also used the platform to encourage positive public health messages, express condolences to and support others, and pay tribute to the deceased. There was ambivalence about the use of video-conferencing technology, which was often presented as an inadequate substitute, and frustration and blame were directed at governments’ inaction and policies as well as the behaviour of the general public.

Governments should provide clear guidance to support end-of-life care providers in facilitating and optimising contact with loved ones, even when strict visiting policies are necessary; this must include adequate access to personal protective equipment. Signposting bereaved family members and friends to bereavement services, and proactively identifying and supporting those at particular risk of poor outcomes, is as crucial during a pandemic, as it is in non-pandemic times. Further research is needed to fully understand the emotional toll expressed in these tweets and the immediate and sustained impacts of bereavement during the pandemic.

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This episode features Dr Lucy Selman (Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK).

During COVID-19, infection control measures have prevented many family members from being with seriously ill or dying loved ones, and impacted on after-death mourning practices and bereavement. Clinicians and funeral officiants have tried to mitigate the impact of infection control measures, for example, using video-technology; however, this has not been done consistently and its acceptability is unknown. The news media play an important role in creating a sense-making narrative, reflecting and enforcing cultural ideas and shaping experiences of illness and bereavement.

Online UK newspapers focused on how COVID-19 disrupted ‘saying goodbye’ (prior to death, at the moment of death and after death) and conflicted with cultural understandings of a ‘good death’ and ‘good grief’, despite efforts undertaken to mitigate the effects of restrictions. Findings demonstrate a prevailing uncertainty, fear and anxiety regarding: changes to practice; control over access to people who have been hospitalised; the possibility of dying alone or having loved ones die alone; and being unable to properly commemorate a death. Articles focused on what was forbidden rather than permitted and offered little practical guidance for the public.

Understanding the media representations and cultural narratives around a ‘good death’ and ‘good grief’ that influence patients’ and families’ fears and anxieties can help inform person-centred care and bereavement support. Clinicians should explore with families ways of finding meaningful connection and of saying goodbye despite restrictions, and, alongside other bereavement support providers and hospital press officers, should offer alternatives to exaggerated or inaccurate media narratives. More could be done in media reporting to portray diverse experiences and offer practical advice to members of the public dealing with serious illness and bereavement during the pandemic.

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This episode features Dr Stephanie Ament (Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands).

Identification of palliative care needs in patients with chronic heart failure may be more appropriate for the delivery of optimal care than the application of prognostic models to estimate the risk of dying. Interdisciplinary palliative care interventions in addition to regular heart failure care have a positive impact on quality of life, patient satisfaction, advance care planning, and cost-minimization.

Seven tools were identified to help healthcare professionals to recognize palliative care needs in patients with chronic heart failure. The identified tools differ in purpose, content, and user. The validation of the tools and the validation research specifically for the context of chronic heart failure is limited. Guidance and education for using the tool are needed for implementation of a tool in the context of advanced chronic heart failure.

Validated tools are needed to help healthcare professionals to recognize palliative care needs in patients with chronic heart failure. Policy makers, guideline developers and quality improvement experts must be aware of the purpose and prior conditions of existing tools in the context of chronic heart failure before integrating them in policy, guidelines or local work appointments.

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This episode features Dr Geraldine Foley (Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Trinity Centre for Health Sciences, Dublin, Ireland). Gerladine provides a summary of her letter, where she discusses how researchers have an opportunity to identify and learn from the benefits and/or challenges of conducting video-based online interviews with patients and caregivers in palliative care research. Online interviewing through videoconferencing platforms in palliative care research might well become a ‘new normal’ in COVID-19.

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This episode features Professor María Arantzamendi (Institute for Culture and Society-ATLANTES, Universidad de Navarra, Pamplona, Spain).

In the context of patients with incurable disease palliative sedation is used for refractory symptom control. A minority of articles measure the effect of palliative sedation and current assessment of parameters of such effect is limited. The literature about palliative sedation measurement has mainly focused on medication use and level of sedation.

Discomfort Scale-dementia of Alzheimer Type (DS-DAT) and Patient Comfort Score (PCS) are assessment instruments being used to measure the effect of palliative sedation on patient comfort, the latter being validated for palliative care context. There is limited evidence on the timing of assessment, reported use ranges from daily assessment to six times per day, with often hourly measurements until adequate sedation is achieved. There is limited data available on the training and preparation of the health professional who has the responsibility for assessing refractory symptoms and palliative sedation. There is a lack of evidence, regarding measurement approaches or instruments for assessment of existential and psychological distress leading to palliative sedation; and also, for measuring adverse events.

Measurement instruments adapted to palliative care context should be used to assess palliative sedation, as these will facilitate practice improvement and comparability of the study’s results. Adding measurement instruments for comfort can contribute to assessing palliative sedation effects. A more standardized approach to assessing the effect of palliative sedation and possible adverse events, paying special attention to adequate training of health care professionals and timing of measurements, is needed to improve the quality of palliative sedation.

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This episode features Jonathan Bayuo (Presbyterian University College, Abetifi, Eastern, Ghana and The Hong Kong Polytechnic University, Kowloon, Hong Kong).

The immediacy of death in the burn unit is usually in the order of hours or days requiring the timely application of palliative care. Although the culture of burns/ critical care units is evolving the support the integration of palliative care, several barriers such as prognostication and lack of guidelines exist. Clinicians working in burn/ critical care units may experience emotional exhaustion

The findings suggest a complex decision-making process which may delay the initiation of comfort care. Collaboration with palliative care practitioners and training are required to support the integration of palliative care in the burn unit. Guidelines to support the delivery of palliative care may focus on communication, symptom management, and post-bereavement support for families and staff.

A collaborative model of care is required to support palliative care integration in the burn unit. Palliative care for severely burned patients may need to commence alongside active burns management.

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This episode features Dr Catriona Mayland (University of Sheffield, Sheffield, UK).

Advanced head and neck cancer patients have specific challenges due to the impact of the illness on vital functions such as eating, speaking and breathing. Identifying the palliative care needs of this specific cancer subgroup would help provide guidance about how services could best provide care.

Advanced head and neck cancer patients have a diverse range of palliative care needs, but there is variability in terms of access and timing to palliative care services. Dissonance between patients and family carers about information needs and decision-making represent additional complexities. Head and neck cancer patients frequently require acute interventions even during the last weeks of their life.

Tailored needs-based referral systems for advanced head and neck cancer patients may help address issues relating to access to palliative care services. Models of care focused on increased integration and coordination across different care settings and multi-disciplinary teams may help address issues relating to frequent use of acute interventions during the last weeks of life. Prospective multi-centre studies, potentially using mixed methods approaches, and focused on testing specific components of care may help further understand and tailor services more appropriately to meet needs.

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

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This episode features Jeanna Qiu (Harvard Medical School, Boston, MA, USA).

Maintaining quality of life for patients with malignant fungating wounds requires collaboration of diverse healthcare specialties, from oncology and palliative care to wound care. Research has explored the experiences of patients with malignant fungating wounds and the nurses who treat them. It is essential to understand the experiences and perceived roles of clinicians from different specialties and disciplines who treat patients with malignant fungating wounds

Different clinical specialties assumed the leading role at different points of the clinical care timeline with medical oncology prominent throughout care. Identifies the points in time when collaboration between specialties is essential, when communication fails, or when clinicians from different specialties have differing perspectives and experiences.

Wound care and medical oncology must collaborate effectively to ensure accurate assessment of the progression of the wound and cancer. Palliative care and oncology must partner effectively to ensure patients’ quality of life and when to stop curative treatment. Strategies like joint visits or strengthening the professional relationships across specialties such that palliative care and oncology clinicians can have open conversations about patients may help to reduce the prevalence of conflicting messages to patients.

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This episode features Dr Bridget Candy (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK).

A systematic review of effectiveness data on aromatherapy, massage and reflexology in palliative care drew inconclusive conclusions. A systematic review of qualitative evidences shows palliative care patients highly value complementary therapy.

None of the aromatherapy, massage or reflexology trials included all key delivery components as outlined by palliative care patients. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. This novel but simple method of integrating synthesised qualitative and quantitative reviews through matrices allows the reasons for inconclusive trial evidence to be explored.

This synthesis has highlighted a need for fully powered, robust trials of aromatherapy, massage and reflexology that are conducted with the key components described by people with palliative care needs. Outcome measures should be appropriate to capture the range of potential benefits highlighted by people with palliative needs. In the meantime, complementary therapies should continue to be offered as part of palliative care.

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This episode features Dr Katie Ekberg (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia) and Dr Anthony Herbert (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia).

The urgency of caring for children with complex and serious conditions ensures that care must continue during the Coronavirus Disease 2019 (COVID-19) pandemic.

As yet, guidelines for communication with families about the COVID-19 pandemic are not based on direct observational evidence of actual communication practices within palliative care during the pandemic. The current study provides evidence of the pervasive relevance of communication about the COVID-19 pandemic during clinician-family paediatric palliative care consultations.There was a pervasive relevance of serious and non-serious talk about the pandemic.
Topics typical of standard paediatric palliative care consultations often led to discussion of the pandemic, including medical discussions and psychosocial and lifestyle discussions.Clinicians (55%) and parents (45%) initiated talk about the pandemic.

Clinicians should expect and be prepared for the pervasiveness of talk about the COVID-19 pandemic within standard paediatric palliative care consultations, so that they can be flexible in how they respond to families.
Future guidelines should consider the pervasive and varied ways that conversations about a pandemic are raised within and across routine consultations.

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This episode features Dr Yakubu Salifu (International Observatory on End of Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK).

Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.
The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana.

Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care.
In resource-poor contexts, there are significant challenges associated with home caregiver support. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.

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This episode features Dr Dominika Lisiecka (Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Institute of Technology Tralee, Tralee, Ireland).

Amyotrophic lateral sclerosis causes multiple neurodegenerative symptoms including dysphagia, which impacts on person’s ability to eat and drink in a safe way and can contribute to chest infections, pneumonia and death. Family caregivers play an important role in managing a person with amyotrophic lateral sclerosis, but little is known about how dysphagia impacts on their own lives.

Managing progressive dysphagia can be a huge challenge for caregivers of people with amyotrophic lateral sclerosis and can lead to multiple psycho-social consequences. Caregivers may be extremely concerned about the safety of a person with amyotrophic lateral sclerosis during meals and fearful of choking. Dysphagia transforms caregivers’ perception of food. The caregivers’ approach to dysphagia may depend on the duration of caregiving and the caregiver’s relationship with the person with amyotrophic lateral sclerosis.

Caregivers of people with amyotrophic lateral sclerosis need support from professionals to manage dysphagia at home. In particular, advice should be provided in relation to managing adverse episodes, such as choking at home. Professionals delivering services for dysphagia should find ways to recognise and address the needs of the caregivers of people with amyotrophic lateral sclerosis rather than focusing on the person with amyotrophic lateral sclerosis alone.

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This episode features Kerry Micklewright and Dr Morag Farquhar (School of Health Sciences, University of East Anglia, Norwich, UK).

Informal carers play a vital role in supporting patients with chronic obstructive pulmonary disease (COPD). COPD carers may have unidentified support needs that could be a target for intervention by clinicians. The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based tool to enable identification of carer support needs. Initially developed mainly with carers of patients with end-stage cancer, it is unclear if it encompasses all the potential support needs of COPD carers.

Knowledge relating to COPD carer support needs from published literature was synthesised, including needs carers felt were met, needs carers felt were unmet and supportive inputs carers considered helpful. The identified support needs were then mapped to the CSNAT, and this exercise suggested that the addition of a question encompassing relationship management issues may be required to make CSNAT more comprehensive for COPD carers.

Many of the support needs of COPD carers are unmet: particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. COPD carers would benefit from a comprehensive, person-centred assessment of their needs and appropriate response to these needs by clinicians. The CSNAT is a promising approach to identifying COPD carer support needs, though it may require an additional question on relationship management to ensure it fully encompasses the potential needs of this group.

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This episode features Minna Hökkä (Research Unit of Nursing Science and Health Management, Medical Department, Oulu University, Oulu, Finland).

Palliative care is provided across a wide range of healthcare settings, from tertiary hospitals to primary care. It has been recognized that palliative care services should be delivered in at least two or three levels (i.e., palliative care approach, generalist palliative care, specialist palliative care).
All healthcare professionals should have the appropriate education and competencies to provide high-quality palliative care. Nurses have an important role in the provision of palliative care in all levels.

This systematic integrative review is the first to focus on empirical studies defining the core competencies of palliative care nursing aligned with the different levels of palliative care provision.
The results show that both the distinct levels of palliative care provision and corresponding palliative care nursing competencies are rarely defined.

Rather than describing which core nursing competencies are the most related to each level of palliative care, previous research has concentrated on identifying the diverse competencies necessary for different specific settings and how they can be categorized in different aspects of nursing (e.g., competencies related to patient–nurse relationship).
Nurses with a specialized or advanced nurse practitioner role in palliative care have extended clinical competencies, which include the ability to provide informal education and guidance to colleagues.

Nursing competencies in palliative care, especially the ones that are more relevant to each level of palliative care provision, should be better outlined to enhance palliative care development, education and practice.
Further research that addresses how nursing competencies differ across the levels of palliative care provision is needed.

Full paper available from: https://journals.sagepub.com/doi/10.1177/0269216320918798

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

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This episode features Rebecca Anderson (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK).

Honest prognostic communication with families of patients in the final hours and days of life is important for enabling a good death and for families’ preparedness for that death.
Prognostic uncertainty makes this communication challenging for clinicians and families.

Clinicians provided what we term ‘absolute categorical time estimates’ (suggesting a prognosis of ‘hours’ or ‘days’) and explained how that prognosis was reached, allowing them to reduce prognostic uncertainty without committing to an overly specific timescale.
When requesting prognostic information, relatives helped to relieve the burden of uncertainty for clinicians by alluding to their awareness that prognostication is a subjective judgement.
Clinicians and relatives could be direct about prognosis without explicitly referring to ‘death’ and ‘dying’, as references to time were understood by both parties as referring to prognosis.

This paper identified key practices for communicating prognosis with families of patients at the very end of life, such as explicitly stating the uncertainty while invoking expertise, and using absolute categorical time estimates when providing a prognosis.
These practices could be taught as part of communication training using clips of recordings from real-life interactions.

Full paper available from:
https://journals.sagepub.com/doi/full/10.1177/0269216320910934

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

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This episode features Dr Emily Harrop (Marie Curie Research Centre, Division of Population Medicine, Cardiff University, Cardiff, UK).

The support needs of people experiencing bereavement vary significantly. Bereavement support in palliative care involves different types and levels of provision to accommodate these needs. Specialist grief therapy is known to be effective for those with high-level risk and needs.
Bereavement interventions were wide ranging and included bereavement support and social groups, psychological and counselling interventions and other types of support such as arts-based, befriending and relaxation interventions.
Good quality randomised controlled trial evidence was only available for targeted family therapy and a non-targeted group–based therapy intervention, both of which were introduced during the caregiving period and found to be partially effective.
The synthesis of qualitative evidence identified three core impacts which were common across interventions: ‘loss and grief resolution’, ‘sense of mastery and moving ahead’ and ‘social support’.

The qualitative evidence suggests the value of peer support alongside opportunities for reflection, emotional expression and restoration-focused activities for those with moderate-level needs.
These findings suggest the relevance of resilience and public health–based approaches to bereavement care.

Full paper available from:
https://journals.sagepub.com/doi/10.1177/0269216320920533

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

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This episode features Professor Catherine Walshe (International Observatory on End of Life Care, Lancaster University, UK). Publication bias is known, but usually associated with direction of research findings. Bibliographic analysis of databases shows publication rates differ between countries, and an increase in total number of publications over time. No journal focused analysis has yet been undertaken to understand their role in the geographical dissemination of knowledge. Papers in highest ranked palliative care journals are typically cited between 1-9 times in the time period used to calculate an annual impact factor, with some journals having high numbers of uncited papers. Most authors in the highest ranked palliative care journals come from North American (54.18%) or European (27.94%) institutions. Preliminary sensitivity tests show that the odds of an author being from a North American institution increase 16.4 times if the journal is North American, and of being from a European institution 14.0 times increased if the journal is European. Palliative care research publication is clustered geographically, and readers may not be widely exposed to potentially relevant research from other cultures or contexts if they only read journals from their own continents.

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The palliative care needs of infants, children and young people differ to those of adults. The broad spectrum of paediatric life-limiting or life-threatening conditions mean that symptoms are varied and complex to manage. The UK National Institute for Health and Care Excellence (NICE) has emphasised pain management in paediatric palliative care as a research priority. This is the first systematic review and meta-analysis to investigate and report on the barriers and facilitators experienced by carers and healthcare professionals when managing paediatric symptoms at end of life. Healthcare professionals’ attitudes, treatment and its side effects, place of care and families’ own symptom management strategies all impact on family caregivers’ ability to manage symptoms. Barriers and facilitators to symptom management for healthcare professionals include medicine access, treatment efficacy and side effects, specialist support, training and education, health services delivery and home care.

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This episode features Emel Yorganci (Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, London, UK). Usual care provided to patients is rarely described in detail in randomised controlled trials (RCTs) of a complex intervention in palliative care. To interpret the effectiveness of interventions tested within RCTs, the care provided in the comparison arm must be described. Approaches including the use of open-ended questions and observations have been used in trials to understand care provided but lack convergent validity. Usual care provided in an RCT was characterised using a multi-method approach at different time points and from different professional perspectives. Similarities and variations in the care provided to patients within and across study sites and over time were identified refuting the assumption that all control participants received the same usual care. This paper provides a method for the classification of the usual care that should be embedded within RCTs of complex interventions. Assumptions made about the usual care delivered to patients during intervention development may not always remain valid at the testing stage. Characterising usual care ensures that interpretation of findings of the effectiveness of the tested intervention is more valid.To avoid incorrect interpretations of complex interventions in palliative care, usual care is best characterised using a multi-method approach embedded within the design of RCTs.

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This episode features Kim de Nooijer and Sophie van Dongen (Erasmus University Medical Center, Rotterdam, Netherlands). Self-management has predominantly been studied in the context of chronic diseases, where it has been defined as ‘the ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with the condition’. Patients with advanced cancer experience severe, multidimensional symptoms and challenges and are increasingly expected to actively manage their health and care. There still is a lack of insight into the full range of self-management experiences of patients with advanced cancer and the attitudes of relatives and healthcare professionals towards self-management of these patients. This study demonstrates that self-management strategies of patients with advanced cancer span many domains: medicine and pharmacology, lifestyle, psychology, social support, knowledge and information, navigation and coordination and medical decision-making. Patients’ self-management strategies and experiences are highly individual and divergent and may be substitutional, additional and distinctive or conflicting compared to care provided by healthcare professionals. Healthcare professionals perceive self-management as both desirable and achievable if based on sufficient skills and knowledge and solid patient–professional partnerships. Self-management support programmes for patients with advanced cancer can benefit from an individualised approach that re-evaluates patients’ needs and wishes, is embedded in solid partnerships with relatives and healthcare professionals, and is incorporated into existing models of care. Future studies on self-management of patients with advanced cancer need to further examine attitudes of relatives and healthcare professionals and investigate effectiveness and working mechanisms at the levels of patients, communities and healthcare organisations and policy.

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This episode features Dr Catriona Mayland (University of Sheffield, UK). Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services. This prospective cohort study recruited 5402 people with a new diagnosis of head and neck cancer from 76 UK cancer centres over 3 years. In summary, the results show that in addition to those with incurable head and neck cancer, there is a small but significant ‘curative’ subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.

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This episode features Dr Deokhee Yi (Cicely Saunders Institute of Palliative Care, King's College London). Large variation exists in the health service use near the end of life and a 10% of patients are especially high-cost users. A high proportion of care costs in the last year of life occur in the last 3 months. Patients nearing the end of life often prefer to be cared for at home, but habitually spend much time in hospital. Our samples are from older patients with higher risks and more complex needs, having had contacts with specialist palliative care services in three countries where palliative care services are established and integrated into the health care system. In the last 3 months of life, more than 80% of the total health and social costs were attributable to hospital care and the costs of palliative care were only ~10%, despite the fact that all patients had accessed specialist palliative care and reported high satisfaction with these services. Uniquely, the authors were able to compare actual costs, based on utilization, therefore providing a more robust comparison between countries with different reimbursement systems. Cost distributions in England were more homogeneous, and with lower mean costs, than in both the United States and Ireland. Financial difficulties and poor experience with home care services were associated with being a high-cost patient, but having cancer or non-cancer, or having multimorbidity was not.

Implications for practice, theory or policy. Increasing community palliative care services may help older patients at the end of life avoid unwanted hospital care and increase care quality, value and access, and it should be a policy priority. People with poverty, increased age and receiving poor home care should be a target for future interventions to improve care at the end of life. The lower and more homogeneous costs in England require investigation, including the effects of different payment/reimbursement systems for health care.

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This episode features Danni Collingridge Moore (International Observatory on End of Life Care, Lancaster University, Lancaster, UK). The provision and quality of palliative care delivered in long-term care facilities (LTCFs) varies and does not always meet the needs of the residents. Interventions to improve palliative care have been shown to lead to improvements in the quality of care received by long-term care facilities residents. The implementation of such interventions and the factors that facilitate their uptake within an long-term care facilities are not well understood. This paper provides a scoping review of implementation strategies used by palliative care interventions in long-term care facilities. This review has identified four organizational strategies for the implementation of palliative care interventions: facilitation, education/training, internal engagement and external engagement. Three developmental stages comprise the implementation process: conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change. The implementation strategies used varied across the studies identified; how implementation can support intervention uptake requires. The implementation strategies used to implement palliative care interventions in long-term care facilities are underreported, and separating characteristics of an intervention from the implementation process is complex. Further guidance is needed on the reporting of implementation strategies. The findings of this review may inform the development and implementation of future palliative care interventions in this setting and how they can be implemented more effectively

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This episode features Dr Bridget Candy and Dr Megan Armstrong (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK). Aromatherapy, massage and reflexology are widely used in palliative care. Patients themselves often report that these therapies are helpful. It is important to demonstrate value for money in health care service provision including in palliative care. This is the first systematic review to focus on aromatherapy, massage and reflexology in palliative care and to synthesise the evidence using established systematic review methodology. Low-quality trials, and differences in the nature of the comparison arms and in the type of evaluation between trials made it difficult to draw any firm conclusions about the effectiveness of these therapies. Although there was limited evidence on the effectiveness of aromatherapy, massage and reflexology equally no evidence of harm was reported. Heterogeneity across the body of trials suggests the need for theoretical research to understand more clearly how complementary therapies are delivered in palliative care and the best way to measure any purported benefits.

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This episode features Dr Nicola White and Dr Linda Oostendorp (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK). Recognising dying is a core clinical skill. There is inconsistent training in the United Kingdom and both medical students and doctors report feeling unsure and ill prepared when working with a dying patient and their family. This study suggests that the online training resource can alter what information medical students review, to make decisions more like that of the experts. This online training resource could be used to facilitate learning in this complex area, and provide a complementary education approach to clinical training.

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This episode features Brett Scholz (Medical School, The Australian National University, Acton, ACT, Australia). Consumer involvement is required by policy at all levels of health services. Some health disciplines have well-established research programmes focusing on consumer leadership. Palliative care is philosophically consumer-centred, but there has been less of a focus on consumer leadership at the systemic level of palliative care services. The review demonstrates that consumer leadership is an emerging practice in palliative care services and academia. Despite the potential challenges of consumer leadership, consumers are motivated to be engaged with the sector. Consumers are still not as involved in setting agendas in palliative care as policies require. The review findings extend understandings of how to better support consumer leaders, suggesting palliative care service providers educated by consumer academics may be more aware of power imbalances and thus later be able to use their influence for further consumer leadership. To meet policy requirements and realise benefits brought by consumers’ perspectives, more research conducted with (rather than on) consumers in palliative care is needed. Policy requires partnerships with consumers at all stages of palliative service planning, implementation, delivery and evaluation, but does not provide a guide for best practice about how such partnerships are done without tokenism.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319854012

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

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This episode features Mary Scott (Ottowa Hospital Research Institute. Bruyere Research Institute). Many patients and families report improved satisfaction of care when palliative care when they are supported by palliative care specialist teams. Transitions of care from one setting to another are burdensome. Evidence suggests that palliative care can improve this transition from hospital to community support. This narrative systematic review aimed to determine whether paliative care can impact that transition from hospital to home. Fifteen articles were included. Involvement of specialist inpatient palliative care was associated with lower readmission rates, higher referral to hospice and better provision of services after discharge. Heterogenity of study designs were evident. Consequently, futher research is needed to evaluate this area further.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319870649

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

Dr Amara Nwosu, MBChB (Commendation), MRCP, PhD

Consultant in Palliative Medicine, Academic Palliative & End of Life Care Department, Royal Liverpool & Broadgreen University Hospitals NHS Trust.
Honorary Senior Clinical Lecturer, Palliative Care Institute Liverpool, University of Liverpool.
Research Lead, Marie Curie Hospice Liverpool.
Research Scholars Programme, National Institute for Health Research (NIHR) North West Clinical Research Network (CRN)
Technology Editor, Palliative Medicine. Sage Publications. http://pmj.sagepub.com/

Office: 0044 151 706 2274
Email: anwosu@liverpool.ac.uk
Web: www.pcil.org.uk

http://www.amaranwosu.com/
Twitter: @amaranwosu
AmiPal Palliative care podcast: https://soundcloud.com/mypal

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This episode features Dr Amara Nwosu (Palliative Care Institute Liverpool and Marie Curie Hospice Liverpool, Liverpool, UK). Medical robots have mainly been used to support surgical procedures and for a variety of assistive uses in dementia and elderly care. There has been limited debate about the potential opportunities and risks of robotics in other areas of palliative, supportive and end-of-life care. The potential opportunities of robotics in palliative, supportive and end-of-life care include a number of assistive, therapeutic, social and educational uses. There is concern that robots will exacerbate healthcare inequalities, disrupt the workforce and reduce face-to-face human interaction. Future work should evaluate the health-related, economic, societal and ethical implications of using robotic technology in palliative, supportive and end-of-life care. There is a need for collaborative research to establish use-cases and policy recommendations to guide the appropriate use of robots for people with serious illness.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319857628

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

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This episode features André Filipe Ribeiro (Universidade do Porto, Porto, Portugal). The number of patients with morbidities and other complex injuries due to burns has grown over the years. This kind of burn injuries can have a high impact in the physical and psychological health, cause social transformations and changes in role functioning. Palliative care is an active and global specialty of care that can take prominence as a strengthening component of integrated treatment. This systematic review offers a comprehensive overview about the potential benefits of integrating palliative care in burn intensive care units. The integration of palliative care in burn intensive care units can improve patients’ comfort, decision-making processes, and family care. This systematic review can raise awareness about the potential of integrating palliative care in burn intensive care units to both policy makers and healthcare professionals. This review highlights the need for further research in order to develop a better understanding on how palliative care can be best integrated in the care process of patients in burn intensive care units.

Full paper available from: https://journals.sagepub.com/doi/10.1177/0269216319862160

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

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This episode features Rebecca Anderson (Marie Curie Palliative Care Research Department, University College London, London, UK). Poor communication from healthcare professionals is a common complaint from relatives of patients at the end-of-life. Communication with relatives at this time is important for high quality end-of-life care and for relatives’ long-term well-being. Common communication strategies are identified including highlighting the patient’s deterioration to aid decision-making, references to patient wishes, providing relatives with options, tailoring information to individuals and using pacing and staging of information. Healthcare professionals state a belief in using honest, direct language and involving families in decision-making, but there is variation in the extent to which this is implemented in practice. Nurses and allied healthcare professionals play an important role in providing individualized communication with relatives. There is a need for more research on communication with relatives in palliative care settings and with different members of the multidisciplinary team. Training is needed to help healthcare professionals to translate communication guidelines into practice while considering their own emotional needs. Interventions such as question prompt list could also be used to help relatives get the information they need.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319852007

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

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This episode features Professor Miriam Johnson (Hull York Medical School, UK). People with heart failure have poor access to palliative care. People with advanced heart failure have poorer access to palliative care than people with cancer and the evidence base in support of heart failure palliative care is less developed. This systematic review draws together the current literature, both observational and experimental, investigating the use of palliative care in people with symptomatic heart failure. The findings support the use of multi-disciplinary palliative care in this patient group, as distinct from single components only, but trials do not identify who would benefit most from specialist palliative referral. There are no sufficiently robust multi-centre evaluation phase trials to provide generalisable findings.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319859148

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

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This episode features Dr Bridget Candy and Dr Megan Armstrong (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK)

Conventional therapies are not always sufficient to provide satisfactory relief of symptoms to those at an advanced stage of a disease. Evidence on the effectiveness of complementary therapies improving the well-being of people with advanced diseases is uncertain; however, palliative care services often offer such therapies as a way to reduce stress and promote relaxation. This systematic review of qualitative studies found cancer patients (irrespective of disease stage) viewed complementary therapies as providing a sense of physical and psychological well-being. Participants with advanced cancer perceived an improvement in their physical and psychological well-being during and after the complementary therapy session. Participants with advanced cancer experienced a form of escapism or living in the moment that took away their worries about their disease and future. Participants with advanced cancer highlight how they would like the complementary therapy delivered including the importance of building a special relationship with the complementary therapist and a need for more frequent sessions. Hospices and other palliative care environments should continue/consider offering aromatherapy, reflexology and massage where possible and it should be seen as an important aspect of the palliative care people receive. Researchers should develop complementary therapy interventions in the ways in which the palliative care population, with cancer and other advanced diseases, wish them to be delivered.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319846440

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

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This episode features Deidre Morgan (Palliative and Supportive Services, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia).

Functional decline can be anticipated for people with life-limiting illnesses. Trajectories of functional decline differ in shapes and patterns. Understanding patterns of functional decline has implications for patient care and design of responsive health services.

This prospective study identifies two contemporary trajectories of functional decline for patients receiving specialist palliative care in the last 120 days of life. Precipitous deterioration in functional decline for cancers, solid organ failure and cardiovascular disease occurs as cohorts of patients approach Australia-modified Karnofsky Performance Status (AKPS) of 40. The pattern of functional decline for the neurological and dementias cohorts is flatter, showing a prolonged period of low function.

Study findings highlight that different types of care responses and resource allocation may be needed at different time points in different trajectories. This may require rapid mobilisation of carer support and modification of care plans preceding a precipitous functional decline (Trajectory 1). Extended periods of support to maintain patient function and support carers are required for those with a prolonged slow rate of functional decline (Trajectory 2).

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319839024

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This episode features Katrin Gerber ( National Ageing Research Institute & Queensland University of Technology).

Research suggests that people generally would like to receive their end of life care at home. This study aimed to examine the decision making process of how preferences are formed. This qualitative study involved interviews of 9 terminally patients and 8 family carers. The authors found that people's preferences for place of end of life care depended on various factors. Preferences changed with the demands of the situation and were affected by factors such as symptoms, carer capacity and prognosis. This paper further details that instead of only asking 'where do you want to die?' healthcare professionals could consider asking 'why?' to further understand how preferences are formed and change.

Full paper available from: No weblink available yet

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

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This episode features Sarah Combes (Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King's College London, UK).

Older people living with frailty are projected to become one of the largest future users of palliative care. Advance care planning can improve person centred end of life care. However advance care planning is relatively uncommon in frail elders due to many challenges. This review aimed to understand how advance care planning could be better implemented in frail elder population, and to develop a conceptual model to underpin future development. The study concluded that a system wide approach is needed that recognised the importance of living well now, relationships and early engagement. All stakeholders have educational needs; specifically clinicians need to be given the opportunity to develop skills and competencies to recognise, proactively use and create advance care planning opportunities at the end of life.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319845804

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This episode features Dr Bella Vivat (Marie Curie Palliative Care Research Department, UCL, London, UK) and Professor Paddy Stone (Marie Curie Palliative Care Research Department, UCL, London, UK).

Sedative medication may be used to manage intractable symptoms at the end of patients’ lives. No UK guidelines specifically address the detail of how sedatives should be used, but international guidelines endorse monitoring the depth of sedation, and the European Association for Palliative Care (EAPC) framework recommends that monitoring should relate to the aim of using sedatives. Despite internationally agreed guidelines and recommendations, use varies widely between countries and settings, including the depth of sedation sought, and the dosages administered.

This study shows that usual practice when using sedative medication in two palliative care settings in London, UK, is predominantly to use low dosages of midazolam to achieve patient comfort, rather than to sedate patients. Practice in these London settings broadly aligns with EAPC recommendations for proportionate use of sedatives at the end of life. Nevertheless, although the EAPC framework also recommends systematic objective monitoring to monitor the effects of sedatives, clinicians in these settings use only clinical observation, never structured objective tools, even when using high doses of sedatives.

The term ‘palliative sedation’ does not usefully describe all uses of sedative medication in palliative care, since this implies sedation is the aim, which is not always the case. Proportionate sedation might be a preferable term for the type of practice we found in our study. Palliative care guidelines and definitions should clearly distinguish between deep sedation and other uses of sedatives in palliative care. When higher doses of sedative medication are used and/or when the specific intention is to sedate a patient, clinicians may need to employ more structured monitoring of sedative effects.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216319826007

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This episode features Dr Catriona Mayland (University of Sheffield, UK).

The Quality of Death Index showed variability in the international provision of care for the dying. In order to improve care, we need to have validated outcome measures to assess the current quality of care. One method of evaluation is to use the views from the bereaved relatives to assess their own perceptions and as proxy measures for the patient. We have developed a common, core international ‘Care Of the Dying Evaluation’ (i-CODE) questionnaire, assessing both patient care and family-carer support. Engagement of patient and public representatives and bereaved relatives has informed the development process adding to the face and content validity of i-CODE. i-CODE will enable a transnational comparison of care for the dying to be conducted. Results of i-CODE can be used directly for quality improvement purposes. i-CODE may be further developed into an international standard and benchmarking tool.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216318818299

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This episode features Dr Ann Dadich (Western Sydney University, Austrailia)

Specialist home-based palliative care can improve symptom management and quality of life and prevent hospitalisation at the end-of-life. There is significant variation in how home-based palliative care is delivered, even within similar jurisdictions. The clinical practices and contextual factors that enable exemplary palliative care are not well understood. The study identified some of the characteristics that enable brilliant home-based palliative care – notably: anticipatory aptitude and action; a weave of commitment among different individuals, within and beyond a palliative care service; flexible adaptability; and team capacity-building. Using the combined methodology of positive organisational scholarship in healthcare and video-reflexive ethnography, this study also revealed the importance of context in delivering brilliant home-based palliative care. The aforesaid conditions can be adapted for use within other services, particularly those committed to brilliant palliative care. Despite the contributions of this study, policies are required to guide and sustain brilliant home-based palliative care across different settings.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216318807835

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This episode features Dr Simon Etkind (Cicely Saunders Institute, King’s College London, London, UK).

To be person-centred, care should take into account individual preferences. Some influences on care preferences in older people have been described. These include the family and care context, individual response and illness-related factors. Older people living with frailty are at high risk of acute illness episodes; the influences on preferences in the context of frailty and recent acute illness have not been explored. Achieving normality, by ‘getting back to normal’ or ‘finding a new normal’ influences preferences in frail older people with recent acute illness, as participants seek care that will help them find this normality. Preferences are also influenced by the way people respond to changing health and care experiences. We propose a model of influences on care preferences in the context of recent acute illness. The influences described in this model can act as a guide for discussion and elicitation of current and future care preferences in this population. When addressing care preferences with patients and families, clinicians should discuss what may be an achievable normal for them within their social context. Prospective longitudinal study will allow exploration of influences on the stability of care preferences following acute illness.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216318817706

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This episode features Dr Huw Williams ( Cardiff University, UK)

Around 2% –3 % of consultations in primary care are prone to patient safety incidents. Patients receiving palliative care are not immune to patient safety concerns. ‘Out-of-hours’ services are responsible for providing care for two-thirds of the working week (18:30 to 08:00 on weekdays, and all hours at weekends in the United Kingdom). Target patient safety issues for improving palliative care in the out-of-hours setting include medication provision, timely access to care and non-medication treatments such as catheter care and information transfer between providers. Harm outcomes commonly include pain, emotional distress, unnecessary hospital admission, and hastened death. Interventions to address frequently identified sources of harm are presented and should be evaluated robustly in future implementation studies.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216318817692

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

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This episode features Dr Sophie Rees ( University of Warwick, Coventry, UK ) and Dr Ann Hutchinson ( University of Hull, Hull, UK )

Cancer patients are at an increased risk of thrombosis. Current guidance for treatment is injected anticoagulants although there is some doubt as to the long-term acceptability of injections to patients. Many cancer patients are unaware of their increased risk of thrombosis or of the symptoms that should prompt seeking medical attention. Cancer patients find injected anticoagulants acceptable in the context of cancer, especially when given support to overcome initial anxieties. Patients find taking tablets easier, but would only choose tablets over injections if found to be as safe and effective as injected anticoagulants. Cancer patients must be informed of their increased risk of thrombosis and the symptoms for which they should seek help. Rivaroxaban tablets could be offered as a choice when there are sufficient robust data to support the risk–benefit balance.

Full paper available from: https://journals.sagepub.com/doi/10.1177/0269216318815377

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

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This episode features Dr Alex Chan (Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA).

Routine assessment of many established quality indicators is nearly impossible because the information is embedded as unstructured free text within electronic clinical notes. A key example of this is timely documentation of patient care preferences in critically ill older adults. The paper demonstrates that deep learning algorithms can be applied to assess a palliative care quality measure endorsed by the National Quality Forum. The deep learning algorithm analyzed clinical notes >18,000 times faster than clinician coders (0.022 s/note vs 402 s/note). The algorithms can analyze electronic clinical notes in a tiny fraction of the time needed for manual review, offering a practical option for rapid audit and feedback regarding care preference documentation at the system and clinician level.

Full paper available from: https://journals.sagepub.com/doi/full/10.1177/0269216318810421

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

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This episode features Dr Hazel Coop and Dr Clare Marlow (WM CARES (West Midlands Collaborative Actioning Research in End of life and Supportive care), New Cross Hospital, Wolverhampton, UK). This regional survey aimed to determine whether palliative care professionals in the West Midlands (United Kingdom) have discussions about digital legacy with their patients. A total of 210 questionnaire survey responses were received from the 10 participating hospices (response rate of 35%). The majority of respondents (96%, 201/210) had never discussed a patient’s digital legacy with them. The results suggest that palliative care professionals in the West Midlands do not have discussions about digital legacy with patients, largely because of lack of awareness and confidence.

Full paper available from: http://journals.sagepub.com/doi/full/10.1177/0269216318802748

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This episode features Dr Cathy Payne (Institute of Nursing and Health Research, Ulster University, Newtownabbey, UK).

This qualitative study aimed to explore the experiences and perceptions of patients and healthcare professionals on the feasibility and acceptability of palliative rehabilitation during advanced lung cancer treatment. The results of this study demonstrated that patient participants perceived that an individualised behaviour change programme which combined physical activity, exercise and nutritional guidance was of value and should be offered to all those wishing to be actively involved in their cancer management. Engagement in a palliative rehabilitation study led healthcare professionals to have more positive attitudes towards rehabilitation as a component of advanced cancer treatment.

This study highlights the potential impact of palliative rehabilitation as a component of advanced cancer management, but further work is needed to incorporate rehabilitation within lung cancer treatment pathways. Further research is needed to determine if the views held by patient participants are reflective of the wider population of those receiving systemic therapy with palliative intent.

Full paper available from: http://journals.sagepub.com.liverpool.idm.oclc.org/doi/full/10.1177/0269216318794086

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This episode features Dr Karen Neoh (St Gemma’s Academic Unit of Palliative Care, University of Leeds, Leeds, UK).

This national audit aimed to determine national transfusion practice in hospices and compare this against National Institute for Health and Care Excellence and British Society of Haematology guidelines to develop recommendations to improve practice.

The results demonstrated that patients are not usually investigated for the cause of their anaemia, of those that were a significant proportion would have benefitted from B12, folate or iron supplementation, although these were rarely used. Transfusion practice remains too liberal despite greater risks of transfusion-associated circulatory overload in patients with advanced disease. Only 18% of transfused patients had an improvement maintained up to 30 days; 42% had no or very transient benefit, and 32% were dead at 30 days. The authors conclude that more rigorous investigation of anaemia, increased use of alternative therapies and a more restrictive approach to red blood cell transfusions are needed. Furthermore, clinicians should discuss with patients the limited benefit versus higher risks of red blood cell transfusion in this patient group to inform treatment decisions and ensure informed consent.

Full paper available from: http://journals.sagepub.com.liverpool.idm.oclc.org/doi/full/10.1177/0269216318801755

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

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This episode features Professor Mari Lloyd Williams (Academic Palliative and Supportive Care Studies Group, Institute of Psychology, Health and Society, University of Liverpool, Liverpool, UK). This was a pilot trial to determine the effect of a focused narrative intervention on depression in palliative care patients when used in addition to usual care. The study found that focused narrative intervention can be an effective intervention for moderate to severe depression in palliative care patients when used in addition to usual care. The effect of the intervention appears to be sustained at 6-week follow-up. Those randomised to the intervention appeared to have longer survival than patients randomised to usual care. This study supports the requirement for a larger randomised controlled trial. The focused narrative intervention could be delivered by any member of a palliative care team. The cost benefits of the intervention need to be explored in further studies.

Full paper available from: http://journals.sagepub.com/doi/full/10.1177/0269216317711322

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This episode features Marc Sampedro Pilegaard (The Research Initiative of Activity Studies and Occupational Therapy, Research Unit of General Practice, Department of Public Health, University of Southern Denmark, Odense, Denmark). This randomised controlled trial aimed to evaluate the efficacy of the ‘Cancer Home Life-Intervention’ compared with usual care with regard to patients’ performance of, and participation in, everyday activities, and their health-related quality of life. The ‘Cancer Home-Life Intervention’ is a brief, tailored, occupational therapy–based and adaptive programme for people with advanced cancer targeting the performance of their prioritised everyday activities.

The study recruited home-living adults diagnosed with advanced cancer experiencing functional limitations were recruited from two Danish hospitals. They were assessed at baseline, and at 6 and 12 weeks of follow-up. The primary outcome was activities of daily living motor ability.

The results demonstrated that there was effect Cancer Home-Life Intervention was found on the primary outcome; however, people with advanced cancer have substantial problems performing activities of daily living. The majority need an intervention addressing these problems. Therefore, will benefit from occupational therapy. Future research should identify the appropriateness of the intensity, duration and timing of the intervention.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216317747199

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

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This episode features Matthew Allsop (St Gemma’s Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK). This retrospective cohort study aimed to identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death.

The results of this study found that despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216318781417

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

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This episode features Professor David Currow (University of Technology Sydney, Ultimo, NSW, Australia. Wolfson Palliative Care Research Centre, University of Hull, Hull, UK). This transnational online survey aimed to determine the impact of a phase III randomised controlled trial on palliative care clinicians’ self-reported practice change. The orginal study in question described the use of octreotide in the management of inoperable malignant bowel obstruction. This survey was distributed in 2016, 2 years after the first publication of the study in a peer-reviewed journal.The results demonstrated that out of 106 respondents, 52 (49.1%) indicated modified practice (60.9% of those who had previously prescribed octreotide in this setting). In those who reported practice change, most frequently octreotide was now used when other therapies failed. The results suggest that there is a cohort of ‘early adopters’ within palliative care practice as new evidence becomes available.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216318778460?url_ver=Z39.88-2003𝔯_id=ori:rid:crossref.org𝔯_dat=cr_pub%3dpubmed

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

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This episode features Dr Karen Neoh (St Gemma's Academic Unit of Palliative Care). This is the first study to interview hospice inpatients to explore their views about the corneal donation. The study found that patients are willing to discuss donation and further exploration of patients views should be undertaken.

Full paper available from: No link avilable yet

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

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This episode features Merryn Gott (School of Nursing, The University of Auckland, Auckland, New Zealand). The aim of this study was to explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. The study used a constructionist framework underpinned a qualitative research design. Data were analysed using critical thematic analysis.
A reduction in the social networks and community engagement of the older person was identified in the end-of-life period. Numerous barriers to community engagement in advanced age were identified. This study provides strong support for public health approaches to palliative care that advocate building social networks around people who are dying and their family carers. However, it also indicates that strategies to do so must be flexible enough to be responsive to the unique end-of-life circumstances of people in advanced age.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216317735248

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This episode features Professor Miriam Johnson (Director, Wolfson Palliative Care Research Centre, Hull York Medical School). The aim of this study was to: establish cardiology led palliative care versus usual care was feasible, to assess quality of data capture, to facilitate future sample size calculation and to assess survival. Study design was a feasibility, non-randomised trial, which recruited unmatched symptomatic heart failure patients who were receiving maximal therapy for their disease.

The study recruited 77 participants (43 in palliative cardiology and 34 usual care). The study concluded that a future trial is feasible. No difference in survival was noted between the intervention and control groups. This study concludes that cardiology led palliative care may improve care delivery, but further research is required to test this hypothesis further.

Full paper available from:https://doi.org/10.1177/0269216318763225

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This episode features Rachel Depner (Palliative Care Institute, The Center for Hospice & Palliative Care, New York, USA). She reports on her study which aimed to (a) describe a prison-based end-of-life program utilizing inmate peer caregivers, (b) identify inmate-caregiver motivations for participation, and (c) analyze the role of building trust and meaningful relationships within the correctional end-of-life care setting. A total of 22 semi-structured interviews were conducted with inmate-caregivers. Data were analyzed using Consensual Qualitative Research methodology. The study finds that, in total, five over-arching and distinct domains emerged; this manuscript focuses on the following three: (a) program description, (b) motivation, and (c) connections with others. The findings suggest that inmate-caregivers believe they provide a unique and necessary adaptation to prison-based end-of-life care resulting in multilevel benefits. These additional perceived benefits go beyond a marginalized group gaining access to patient-centered end-of-life care and include potential inmate-caregiver rehabilitation, correctional medical staff feeling supported, and correctional facilities meeting end-of-life care mandates. Additional research is imperative to work toward greater standardization of and access to end-of-life care for the incarcerated.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216318755624?url_ver=Z39.88-2003𝔯_id=ori:rid:crossref.org𝔯_dat=cr_pub%3dpubmed

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

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This episode features Professor Gunn Grande (University of Manchester, Manchester, UK). The aim of this qualitative study was to explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers. The study identified current barriers to supporting carers at hospital discharge, which were an organisational focus on patients’ needs, what practitioners perceived as carers’ often ‘unrealistic expectations’ of end-of-life caregiving at home and lack of awareness of patients’ end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition.

This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers’ support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216318756259?url_ver=Z39.88-2003𝔯_id=ori:rid:crossref.org𝔯_dat=cr_pub%3dpubmed

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

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This episode features Dr. Mariona Guerrero (Universitat Internacional de Catalunya, Barcelona, Spain). She reports on her systematic review which aimed to identify meaning in life interventions implemented in patients with advanced disease and to describe their context, mechanisms and outcomes.

The study was a Systematic review of four electronic databases, and involved a realist synthesis of meaning in life interventions using criteria from the Realist And Meta-narrative Evidence Syntheses: Evolving Standards project.

A total of 12 articles were included in the systematic review, corresponding to nine different interventions. Analysis of context, mechanisms and outcomes configurations showed that a core component of all the interventions was the interpersonal encounter between patient and therapist, in which sources of meaning were explored and a sense of connectedness was re-established. Meaning in life interventions were associated with clinical benefits on measures of purpose-in-life, quality of life, spiritual well-being, self-efficacy, optimism, distress, hopelessness, anxiety, depression and wish to hasten death. This review provides an explanatory model of the contextual factors and mechanisms that may be involved in promoting meaning in life. These approaches could provide useful tools for relieving existential suffering at the end of life.

Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316685235

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This episode features Anna Bone (Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London). This study aimed to project where people will die from 2015 to 2040 across all care settings in England and Wales.

The study was a population-based trend analysis and projections using simple linear modelling. All deaths (2004–2014) from death registration data and predicted deaths (2015–2040) from official population forecasts in England and Wales. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and ‘other’ were applied to numbers of expected future deaths.

The study demonstrated that if current trends continue, the number of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023. Due to increasing demand, in order to sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216317734435

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This episode features Briony Hudson (Louis Dundas Centre for Children’s Palliative Care, UCL Institute of Child Health, London, UK
and Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK) and Linda Oostendorp, (Marie Curie Palliative Care Research Department, UCL Division of Psychiatry, London, UK). They describe their study which aimed to explore how children and young people (aged 0–25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. The study was a systematic of (quantitative, qualitative and mixed methods) research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. A total of 215 studies – 152 qualitative, 54 quantitative and 9 mixed methods – were included.

The study demonstrated that all stages of recruitment in children were under reported. Most studies did not provide information of how children were identified or invited to participate in research. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment. Consequently, future papers should clearly state (1) how eligible participants were identified, (2) how people were invited to participate and (3) why people decide to take part or not. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316663856

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

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This episode features Wendy Duggleby (University of Alberta, Edmonton, Canada) who describes a study which aimed to (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience.

The study was a meta-synthesis review of qualitative (and mixed-method) research, which described caregiving experiences of family caregivers for community-living persons with advanced cancer at the end of life. Seventy-two studies were included.

The study reports how family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. The take home message is that family caregivers will reuire support to deal with these significant changes; however, positive outcomes are possible when based on evidence. These findings provide a framework to guide the development of supportive programs and future research. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316673548

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This episode features Claudia Virdun (Faculty of Health, University of Technology Sydney (UTS), Ultimo, NSW, Australia) who describes a study which aimed to gain a richer and deeper understanding of elements of end-of-life care that consumers consider most important within the hospital setting.

The study was a meta-synthesis (review of all the qualitative research on a given subject) of consumer narratives reporting what they considered important elements of end of life care. Sixteen studies were included. Synthesis yielded 7 patient and 10 family themes including 6 common themes: (1) expert care, (2) effective communication and shared decision-making, (3) respectful and compassionate care, (4) adequate environment for care, (5) family involvement and (6) financial affairs. Maintenance of sense of self was the additional patient theme, while the four additional family themes were as follows: (1) maintenance of patient safety, (2) preparation for death, (3) care extending to the family after patient death and (4) enabling patient choice at the end of life.

The take home message is that patients and carers have been consistent in the factors that they consider important in end of life care. Systems are needed to enable optimal end-of-life care, in accordance with consumer priorities, and embedded into routine hospital care. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316673547

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This episode features Suresh Kumar Chhetri (Preston MND Care and Research Centre, Department of Neurology, Royal Preston Hospital, Lancashire Teaching Hospitals NHS Foundation Trust, Preston, UK) who describes a study which aimed to explore patients' experience of enteral feeding and its impact on quality of life.

The study was a questionnaire based prospective analysis of 21 MND patients receiving enteral feeding followed at 3, 6 an 12 months post gastrostomy. The questionnaire was asked participants about their quality-of-life.

The study focused on four main themes: (1) problems with enteral feeding (2) improved quality-of-life (3) no change in quality-of-life and (4) worse quality-of-life. The research found that most of the study participants acknowledged the importance of enteral feeding and had a positive attitude to this practice. However, the positive impact of enteral feeing may not be observable in the first few months post gastrostomy. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316679928

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This episode features Professor Matthew Allsop (Leeds Institute of Health Sciences, University of Leeds, Leeds, UK) who describes a study that outlined and applied an evaluation framework to examine how and when electronic documentation of advance care planning is occurring in end of life care services.

The study extracted data from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city.

This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation.. Full paper available from: http://journals.sagepub.com/doi/full/10.1177/0269216316663881

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This episode features Professor Liz Forbat (Australian Catholic University, Canberra, ACT, Australia) and Rachel Bilton-Simek (Calvary Public Hospital Bruce, Canberra, ACT, Australia). Together they describe a Single-arm mixed-method feasibility proof-of-concept trial which aimed to design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package).

The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: −1.22, −0.46).

In conclusion the findings demonstrates education improves caregiver preparedness and is a feasible and acceptable approach. Full paper available from: http://journals.sagepub.com/doi/full/10.1177/0269216317712849

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This episode features the work of Philippa Cahill et al (School of Medicine, The University of Notre Dame Australia, Sydney, NSW, Australia) who describes a systematic review that examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families.

The authors found that there was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures.

In conclusion the findings demonstrates that there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice. Full paper available from: http://journals.sagepub.com/doi10.1177/0269216316658833

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This episode features the work of Professor David Currow et al (Flinders University, Adelaide, SA, Australia) who describes a study which aimed to compare characteristics, expressed unmet needs and outcomes for spousal caregivers, with other caregivers at the end of life, by gender and age. The study used data from The South Australian Health Omnibus (an annual, random, face-to-face, cross-sectional survey wherein respondents are asked about end-of-life care). The authors found that bereaved spousal caregivers were more likely to be older, female, better educated, have lower incomes, less full-time work, English as second language, sought help with grief and provided more day-to-day care for longer periods. Spousal caregivers were less likely to be willing to take on caregiving again, less able to ‘move on’ with life and needed greater emotional support and information about illness and services. In conclusion, spousal caregivers are different from other caregivers, with more intense needs that are not fully met. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316663855?journalCode=pmja

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This episode features the work of Dr Eliza M Park et al (Department of Psychiatry, The University of North Carolina at Chapel Hill, Chapel Hill, NC, USA) who describes a study which aimed to describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision making and to explore whether these experiences differ by their functional status. The study was a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. The results demonstrated four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children, (2) “missing out” and losses of parental role and responsibilities, (3) maintaining parental responsibilities despite life-limiting illness, and (4) parental identity influencing decision making about treatment. Full paper available from: http://journals.sagepub.com/doi/abs/10.1177/0269216316661686

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This episode features the work of Dr Hilde Buiting et al (Netherlands Cancer Institute, Amsterdam and Netherlands Comprehensive Cancer Organisation (IKNL), Utrecht) who conducted a medical record review of patients selected selected patients from the nationwide Netherlands Cancer Registry. The aim of the study was to explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors’ notes about decisions on palliative systemic treatment. Full paper from: http://journals.sagepub.com/doi/abs/10.1177/0269216316661685?journalCode=pmja

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This episode features the work of Dr Peter Tanuseputro et al (Bruyère Research Institute and Ottawa Hospital Research Institute, Ottawa, ON, Canada) who conducted a retrospective population-level cohort study, describing palliative care in the last year of life using linked health administrative databases which the aim to provide a population perspective on end-of-life palliative care delivery across health sectors. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316653524

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This episode features the work of Dr Alze Tavares et al (Hospital Paulistano, Sao Paulo, Brazil) who conducted a study which aimed to implement a patient-centred outcome measure in daily practice, in order to fulfil one quality indicator, which is to improve pain during the 72 hours after admission, in at least 75% of patients.. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316655349

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In this episode Dr James Downar (University of Toronto, Canada) presents a study which aimed to determine whether standardized patient simulation offers benefit over didactic sessions alone for improving skill and comfort discussing goals of care of first-year internal medicine residents. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316652278

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In this episode Professor Robin Cohen (Departments of Oncology and Medicine, McGill University, Montreal, QC, Canada) presents a study which aimed to revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire–Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature. A copy of the questionnaire can be requested by email (robin.cohen@mcgill.ca). Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316659603

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In this episode Simon Noah Etkind (King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK) presents the results of a secondary thematic analysis of interviews study. The study aimed to understand patient experiences of uncertainty in advanced illness and subsequently develop a typology of patients’ responses. Full paper from: http://journals.sagepub.com/doi/full/10.1177/0269216316647610

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In this episode Dr Alastair Canaway (Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick) presents the findings of study which aimed to develop an outcome measure suitable for use in economic evaluation that captures the benefits of end-of-life care to those close to the dying. Full paper from: http://journals.sagepub.com/doi/abs/10.1177/0269216316650616

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In this episode Yolanda Penders (End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium) presents a study which aimed to investigate the self-reported out-of-pocket costs associated with healthcare in the last year of life of older adults in Europe. Full paper from:http://pmj.sagepub.com/content/early/2016/04/27/0269216316647206.abstract

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In this episode Camilla Zimmermann (University of Toronto) presents the findings of qualitative study which aimed to determine, from a participant perspective, the experience of receiving early palliative care and elements of that care. Full paper from: http://journals.sagepub.com/doi/abs/10.1177/0269216316649126

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In this episode Professor Myra Bluebond-Langner (Louis Dundas Centre for Children’s Palliative Care) discusses the challenges faced by researchers aiming to recruit children and young people (CYP) with life-limiting conditions (LLCs) or life-threatening illnesses (LTIs) to research studies. For the full paper: http://pmj.sagepub.com/content/30/10/979

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In this episode Dr Richard Harding (Kings College London) presents a study of drug-susceptible and drug-resistant tuberculosis. Specifically the study aimed to (1) identify most burdensome problems, (2) compare intensity of problems for drug-susceptible and drug-resistant tuberculosis and (3) identify predictors of problem identifiers. Full paper from: http://pmj.sagepub.com/content/30/9/862.long

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Patient and caregiver perspectives on managing pain in advanced cancer

In this episode Mary Godfrey (University of Leeds) discusses the knowledge gap in the literature between the conception of pain as complex, and the processes of how patients with cancer understand and experience pain. She outlines her qualitative longitudinal study, which involved face-to-face interviews and audio diaries with patients with advanced cancer and their carers. Her research provides insights of the experience of patients and their carers, and highlights the theoretical and practical gap in the current understanding of cancer pain. For the full paper: http://pmj.sagepub.com/content/30/8/711.abstract

SAGE Palliative Medicine & Chronic Care: Recent Episodes

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