PHPCI Newsletter | Issue 4 | December 2021

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FROM THE PRESIDENT

What a year!

It’s hard to believe how much our world, our communities and our day-to-day lives have changed in the past two years. Sadly, amongst our numbers in the PHPC world, we have sees lives lost, families and friends immersed in grief, and a greater sense of uncertainty than has been seen for many decades.

Yet we’ve also seen a reinvigoration in so many communities as they rally around their members and connect. At PHPCI, we continue to promote these connections, especially where caregiving, dying and grieving are present. A highlight of 2021 for PHPCI was the inaugural World Compassionate Communities Day held on 1st November. This event, ‘chasing the sun across the world’ showcased diverse community actions from across the globe, sharing the practice wisdom of so many whose work over many years was needed as never before during this pandemic. On behalf of PHPCI, I acknowledge the efforts taken to share these experiences and the communities, cities and towns, and countries where this wisdom is embodied. It’s going to be exciting to watch WorldCCDay evolve in the years ahead as we establish this annual global event.

The inaugural World Compassionate Communities Symposium that followed on 2nd November was another new event for PHPCI in 2021. With our biennial conference moved to 2022, the Council wanted to ensure PHPCI maintained contact with its members and continued to build on the public health palliative care discourse to date. Following opening addresses from the World Health Organization, the symposium comprised four themes of practice, policy, evaluation and research, with each containing addresses from leaders in these components of public health palliative care. Thanks go to the Death Literacy Institute in Australia for their key role in planning and delivering these events, and to the session Chairs and presenters. At this stage, we hope that the symposium will be held biennially on PHPCI non-conference years. 

Preparations continue for the 7th Public Health Palliative Care International Conference in Bruges, Belgium, in September 2022. Information about the conference, how to submit an abstract, how to register and so on is detailed in this newsletter. A research summer school will precede the conference, and there are details below also. You can click HERE for comprehensive information about these events.

The PHPCI journal, Palliative Care and Social Practice, continues to provide a forum for scholarly discourse in public health palliative care and you are encouraged to read it and invited to contribute. Go to the journal website for more information.  And, in a significant step in this field, the first edition of The Oxford Textbook of Public Health Palliative Care is just months from launching. I’m sure this text will become a global mainstay of the study, research and practice of public health palliative care. In this newsletter, co-editor (with Prof. Allan Kellehear) Dr. Julian Abel provides a tempter for what is to come.

On behalf of the PHPCI Council, I send my best wishes to you as 2021 draws to close and a new year begins.

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Upcoming Events!

7th International Public Health Palliative Care Conference 2022

Registration is now open!

The 7th Public Health Palliative Care International conference (PHPCI) will be held in Bruges (Belgium), September 20-23, 2022. The congress title is: “Democratizing caring, dying and grieving: participation, action, understanding and evaluation”. The conference brings together leading innovators, researchers, practitioners, policy makers, representatives of civic society in the public health palliative care approach. The main conference venue will be the brand-new Bruges Meeting & Convention Centre.

The conference is hosted by the End-of-Life Care Research Group of Belgium and is organized in collaborations with PHPCI, Compassionate Bruges, the EAPC Reference Group on Public Health & Palliative Care and the EAPC Research Network.

Extended abstract submission deadline: 31 January 2022

More information about the upcoming conference can be found HERE.

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Submit your conference abstract

Abstract submission deadline (extended): 31 January 2022

Acceptance notification: 30 April 2022

 We will be calling for four different types of abstracts:

• Oral presentation of each 10-15 minutes

• Poster presentations

• Workshop of 1.5 hours

• Theme based symposium of 1.5 hour with 3 – 4 presentations and two chairs.

 All innovators and out-of-the-box ideas are welcome:

• Designing and supporting compassionate communities

• Research and evaluation in compassionate communities

• Settings approaches (eg compassionate workplaces, schools)

• Building connections and partnerships

• Everyday ageing, dying and grieving

• Equity diversity and inclusion

• Empowerment of patients, carers, volunteers

• Social change and innovation: power and practices

• Lessons learnt in the COVID-19 pandemic, post-pandemic ideas

• Cultural practices

• Out-of-the-box: innovative ideas and projects

For more information visit the conference website abstract page:

Submit your abstract HERE

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International Summer School on Public Health & Palliative Care Research

The first international Summer School on Public Health & Palliative Care Research will be held from 14 to 17 September 2022 in the historical city of Ghent (Belgium), ahead of the 7th Public Health Palliative Care International Conference!

This Summer School will bring together international, leading experts in the field and a new generation of talented young researchers for an in-depth exploration of cutting-edge research in palliative care for public health. Over the course of four interactive days, we will explore the following themes through keynote lectures and interactive workshops:

1. Compassionate Communities & Community-based participatief onderzoek

2. Evaluation of palliative care interventions in public health: processes and results

3. Epidemiology: population screening in palliative care for public health

4. Translating research into practice: valorisation of health-promoting palliative care

The Summer school is organized by the European Association for Palliative Care (EAPC) Reference Group on Public Health & Palliative Care and hosted by the End-of-Life Care Research Group (VUB – UGent). Visit the website for more information. Click here to register for the Summer School!

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Title: The Sustainability Guide – Helping Compassionate Community Initiatives Achieve Impact

The Compassionate Communities Sustainability Guide strengthens Compassionate Community initiatives by equipping those supporting and leading the work with best practices for sustainable community-led initiatives, tools to initiate these best practices, and case studies. This guide builds off the startup phase and helps Compassionate Communities with the next phases of development - scale and spread. This session will explore how to use the guide and an overview of best practices for creating social change.

The session will include an interactive activity where participants will interact with the guide to address current barriers.

Details:

Date – February 17, 2022

Time -2-3:30 pm EST

Presenter – Bonnie Tompkins - Compassionate Communities National Lead, Pallium Canada

Register by clicking here

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Showcasing PHPC initiatives: Partnerships with structurally vulnerable groups

No Barriers Here

No Barriers Here is a model that adopts a public health approach to palliative care, working alongside communities who experience systematic differences and inequity accessing palliative and end of life care services and challenging the barriers that organisation often create.

Part 1: No Barriers Here and people with learning disabilities

In the UK, there are more than 1.5 million people with a learning disability. Many experience health inequalities, a lower life expectancy, and die avoidable deaths. Despite Advance Care Planning being an essential part of palliative care, health care professionals frequently avoid end of life conversations with people with learning disabilities.

The Mary Stevens Hospice aimed to explore inequalities that people with learning disabilities experience, developing ‘No Barriers Here’, a project that works in co-production with people with lived experience and used arts-based approaches to create alternative Advance Care Planning conversations. A pilot project launched in September 2021, co-produced by people with learning disabilities and divided into two workstreams; arts-based advance care planning workshops and education for health care professionals.

Three cohorts of workshops were delivered, with each cohort consisting of individual sessions around Advance Care Planning: ‘getting to know me’, ‘who and what matters’, ‘choices and wishes’ and ‘my legacy’. The co-production team produced accessible information, short explanatory videos and created art boxes containing collage materials, textiles and weaving equipment to create distinctive and personalised Advance Care Plans. Due to Covid-19 two out of three cohorts were delivered online, with reasonable adjustments made by the project team to ensure accessibility and inclusivity.

The No Barriers Here model shaped valuable dialogue within communities. It encouraged and empowered conversations from people with learning disabilities with people with learning disabilities, helping individuals to better understand and actively engage in early conversations about what matters most at the end of life. It shifted the focus from traditional Advance Care Planning discussions and form filling procedures into rich storytelling opportunities that challenged inequalities and provided a reflective environment to explore choices and wishes in life and death.

Part 2: No Barriers Here for people who may be excluded due to identity, culture, ethnicity or race (ICER)  

No Barriers Here (ICER) commenced April 2021 and is a co-produced, community-based action research project that aims to improve access to palliative and end of life care for people who may be excluded by identity, culture, ethnicity or race. The project intends to improve approaches to Advance Care Planning using the arts-based workshops with people from Black, Asian and minority ethnic groups (BAME), education for health care professionals and community engagement.  The ethos of the project is ‘doing with’ not ‘doing to’ people to improve experiences of care.    

Recent research (Care Quality Commission 2016, Chidiac et al., 2020) has highlighted the continual presence of barriers in healthcare services which mean that services are not appropriately meeting the needs of people from BAME communities. This is true of palliative and end of life care (Hussain, Koffman and Bajwah, 2021).   

The Covid-19 pandemic has highlighted health inequalities and racial injustice (Chidiac et al., 2020) and the No Barriers Here (ICER) project develops an approach to improving accessibility and understanding of palliative and end of life care services, particularly, Advance Care Planning. It aims to develop confidence, knowledge and skills amongst healthcare professionals by better understanding the experiences and needs of people often excluded or marginalised by identity, culture, ethnicity and race. 

What next?

The attributes of the No Barriers Here model is proving to be an essential and effective tool in engaging with and involving individuals in Advance Care Planning at a community level, particularly those who experience health, socio-economic, structural and systematic inequalities. This consideration led us to consider how No Barriers Here could be used with other populations with further exploration and planned work in place to explore the use of and delivery for No Barriers Here within hostel and temporary accommodation settings with people experiencing homelessness during 2022/23.

 A Train the Trainer programme is planned for delivery March 2022. For further information, please contact Gemma.allen@marystevenshospice.co.uk. Bespoke organisation packages available on request.

Twitter: @nobarriershere

No Barriers Here film.  

Gemma Allen is the Diversity and Inclusion Lead at The Mary Stevens Hospice. Gemma’s passion for equitable palliative and end of life care has resulted in her working alongside communities, enabling access and increasing awareness of palliative and end of life care. Gemma works with people and groups often underserved accessing palliative and end of life care. She often adopts a public health approach to palliative care, responding to and supporting people’s experiences to death, dying, caregiving and bereavement. Gemma is Chair of the UK based charity PCPLD Network. Twitter: @gemma_allen

Dr. Jed Jerwood (PhD) is a state-registered (HCPC) art psychotherapist working with adults experiencing mental ill health in community mental health settings. He has a history of working in hospice and palliative care and his doctoral research concerns improving palliative and end of life care for people with severe and persistent mental illnesses. His research interests concern the use of arts-based research methods, inequality and improving access to healthcare and work with people often marginalised by society. 

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Caregiving at the Margins: Who Cares for People Living in Poverty and who are Homeless While They Are Dying?

When people are dying they get most of their support and care from unpaid family members and friends. Research shows that caregiving can be a way to show love and support toward another person but it is a demanding role. Many caregivers need support from the health and social care systems but don’t always get it. This is especially true for the caregivers of people living in poverty and who are homeless. Primary caregivers are often not related to the dying person. They may be friends, ‘street or chosen family’, or inner city workers. These caregivers often go unrecognized but are in need of support themselves. 

In our research on equity-oriented palliative care we have found that people facing poverty, homelessness, racism, and stigma are often cared for by members of their own communities. Street family, chosen family, and friends often aren’t recognized or supported in their caregiving roles. This lack of understanding and support makes this care work invisible and can put additional burden on individuals, communities, and health systems. What makes their caregiving challenging?

1.     Caregiving in the context of poverty and substance use

When caregivers have minimal or no income their primary focus is on providing for the necessities of life like food and shelter. Some of these caregivers are employed but this means they have limited time to care for the dying person, to attend medical appointments to support the person, and precarious work means they have limited to no access to employment income benefits that might support their caregiving role. Caregivers report that the people they care for lack proper pain management, for example, because of stigmatizing attitudes. People providing care may already lead difficult lives and face ongoing negativity from others due to stigma.

2.     Caregiving in the context of housing instability

In our research, people in need of care experience housing instability. This means that health services, such as home care, can’t be used because there is often no home to go to. Some people have homes but they are sometimes deemed unsafe for health care providers to visit.

As the physical health of people who are dying gets worse and their care needs increase, they face a greater chance of being evicted and losing their housing because social housing organizations or shelters, for example, are often not licensed to enable ongoing medical care. Many caregivers work hard to hide the decline of their dying friends so that they can remain ‘at home’. Many  caregivers also live in housing where policies like single occupancy, no guests allowed and no medical equipment allowed means that their friend who is dying can’t stay with them without risking their own ability to remain housed. This means that the people who are sick and dying are forced to move, often into unsafe housing or even the street.

3.     Caregiving in the context of challenging relationships

Caregivers also have to deal with complicated relationships. For example, the person they are caring for may distrust others, have little to no contact with their bio-legal  family, and may be seen by others as unable to make ‘good’ or ‘healthy’ decisions. In our research, people who are dying have shared that they have experienced a lifetime of having their needs neglected or having others try to ‘change’ or ‘control’ them. Many caregivers had to ‘tread lightly’ to maintain trusting relationships. Caring for people who live unpredictable lives is stressful for family caregivers. 

Family caregivers often experience tension with bio-legal family members, who in some cases have only made contact with the person who is dying just before their death. This is difficult for caregivers who have been their street friends' chosen family for a long time, but are not recognized by the legal/healthcare system or biological family as being ‘family’.

What can we do to help?

• Expand caregiver support, such as end-of-life home care and employment insurance programmes, to include people don’t have homes or regular/formal income.

• Include and engage family caregivers, particularly those caring for people living in poverty and homeless, facing stigma and exclusion, when determining best practices for palliative care.

• Revise existing end-of-life care models to acknowledge diversity of lived experience, issues of trust, and to create approaches to provide better service and support.

• Examine how bio-legal definitions of ‘family’ may exclude people with diverse networks of support (e.g., street families).

• Recognize that caregiver experiences are very different depending on lived experience, social positioning, access to resources and supports, and personality.

• Consider and recognize how alternate family forms could come together to form compassionate community responses to the care of people who are living in poverty, are homeless, and who are also at the end of life.

Citation

Stajduhar, K. I., Giesbrecht, M., Mollison, A., Dosani, N. & McNeil, R. (2020). Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life. Palliative Medicine, 34(7), 946–953.

To get more information please contact Kelli Stajduhar, School of Nursing, University of Victoria, 3800 Finnerty Road, Victoria, BC V8P 5C2, Canada.

Email: kis@uvic.ca

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That Silent Touch of Consolation

Anand Haridas - Content Development Officer, MBT*

Bereavement is the intense experiencing of a sense of loss. It is absolutely personal and there is no way it can be defined in a generalised manner. But there are ways to understand the trajectories of grief and bereavement and it helps a lot in providing support to someone going through that phase.

That was the essential lesson all the 31 participants at the first ever Bereavement Companionship Programme held at Bangladesh took back with them. The 16-hour long programme, spread over four days, was organised online by Mission Better Tomorrow (MBT), an India-based not-for-profit organisation; Institute of Palliative Medicine (IPM), the WHO Collaborating Centre for Community Participation in Palliative Care and Long-term Care and the Death Literacy Institute, Australia, in association with the Palliative Care Society of Bangladesh (PCSB) and Phoenix Wellness Centre, Bangladesh.

The participants, coming from different backgrounds, were in for a total surprise. They were taken through the process of understanding grief and at the end of the programme, they realised the difference between experiencing grief and understanding it.

Like this mother of two, whose elder son was raped and murdered last year and was facing difficulties in dealing the psychological issues of the younger son. The dedicated session on grief and its impact on children helped her understand the bereavement process through which the surviving child was going through.

“Offering support and companionship to the bereaved individuals and families is considered as an integral part of social and religious responsibility here, in Bangladesh. This gesture often goes beyond the limit of relatives and neighbourhood to the level of community at large. Rituals and customs in this regard also strengthen this commitment. The very recent Covid pandemic has introduced us to a different level of grief and bereavement for which we all were most unprepared. Impact of social isolation in death and dying may have a prolonged impact on mental health of the society,” said Prof. Dr. Nezamuddin Ahmad, Founder Director of PCSB, as he explained the contemporary relevance of the programme.

The programme was an eye-opener for the participants, making them aware that thoughtless candour and approach could often cause unintended trauma to the bereaved, he said. As one of the participants noted in the feedback, proper guidance through the scientific manner of handling grief and explanations using internationally accepted models like TEAR models and Tonkin model of grief helped a lot in understanding many behavioural approaches “which we daily mistakenly do in the name of showing empathy.”

The MBT-IPM-DLI combination had already done three successful sessions in bereavement companionship programme in South Indian State Kerala before moving to Bangladesh. “Grief and bereavement are cultural specific to the core. Experience of participatory learning in the programmes in Kerala helped the facilitators in approaching the subject in Bangladesh with open mind. Contributions from participants counted as much as those by the faculty,” said Dr. Suresh Kumar, Founder Director of IPM.

The programme curriculum prepared jointly by MBT, IPM and DLI covered sessions on ‘Knowing Oneself’, ‘Learning from previous death experiences’ and ‘Better Communication Skills’ along with familiarising with theories on grief handling and bereavement. There was an entire session dedicated to knowing how grief impacts children of different age groups. The cultural translation of the programme to suit the requirements of Bangladeshi community happened seamlessly.

“Culturally, Bangladeshis are warm and quite connected to the family and friends. Hence such program will be a one step more forward leap towards a compassionate community” said Dr. Sunjida Shahriah, Director of the Phoenix Wellness Centre.

The overwhelming response that the first programme generated as given enough confidence for the organisers to go ahead with planning of future episodes. As Dr. Nezamuddin said, the Palliative Care Society of Bangladesh is ready to take a leading role to collaborate with other organisations and take the Bereavement Companionship Programme to the larger community of Bangladesh.

Because, it is essential to spread the awareness among general public that bereavement is not about forgetting the grief, but understanding it and reinvesting life in the new reality of absences.

*Mission Better Tomorrow (MBT) is a not-for-profit organisation involved in change making social initiatives for the last 15 years in India and abroad. The core areas focused by MBT are youth and their capacity development, health-related sectors and indigenous communities. The Bereavement Companionship Programme is a pioneering venture by MBT in India and now in Bangladesh.

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Canadian success story: Palliative Education and Care for the Homeless (PEACH)

Trailblazer Dr. Naheed Dosani is a palliative care physician and health justice advocate who has helped transform palliative care for people experiencing homelessness. His experiences and advocacy provide insight and inspiration for the critical need to support equitable access to palliative care with dignity and compassion.

While completing his medical training at a downtown Toronto shelter in 2011, an experience with ‘Terry,’ a dying homeless man, led Dosani to realize that Canada’s public healthcare system was failing many people.

“Terry’s death had a profound impact on me. I was disappointed in medicine, health care and society.  I reflected on my role in a system that has brought significant harm to people who experience homelessness and other structural vulnerabilities like poverty, mental illness and substance use,” said Dosani.

Disillusionment turned to empowerment, spurring Dosani to take action and pursue a vision for equitable access to palliative care for all Canadians. 

About PEACH

Working with Toronto’s Inner City Health Associates, Dosani founded Palliative Education and Care for the Homeless (PEACH). The multi-disciplinary program delivers community-based hospice palliative care to society’s most vulnerable individuals regardless of their housing status or factors such as poverty or substance use.

The program brings housing, mental health and healthcare providers together to plan an individual’s care while recognizing, but not judging, that person’s circumstances.

Central to the PEACH philosophy is trauma-informed care and harm reduction. Spending just one night on the streets can result in life-long trauma. Trauma-informed care recognizes that people experiencing homelessness have experienced serious trauma and doesn’t necessarily question people’s experiences; rather, it assumes that people may have this history and act accordingly.

Harm reduction is a human rights and justice-based approach which focuses on positive change and working with people without judgement, coercion, discrimination or requiring that they stop using drugs as a precondition of support.  

 (Learn more about Terry’s story and the PEACH philosophy in this 9-minute documentary ‘Gimmemore than shelter’.)

Supporting a compassionate community: Grief Circles and Good Wishes

 Compassion is a foundational value of the PEACH approach to care, not just for clients, but also for care providers. The PEACH team recognizes that moral distress and compassion fatigue are part of life in the homelessness sector for care providers.  The team created ‘Grief Circles’ to support their needs to grieve as a community in a safe space. Led by the PEACH team, frontline health and social service providers to come together to remember those they have served, reflect on their care and reinvest into self-care so they can better support future clients.

 The COVID-19 pandemic and opioid crisis have heightened grief and trauma for providers witnessing increased suffering and death. Grief Circles were maintained virtually during the pandemic, with numerous teams working in social services and acute care hospital departments adapting for their own use.

Listen to this episode of CBC’s White Coat Black Art to experience a PEACH grief circle.

Good wishes

The ‘Good Wishes Program’ is a partnership between the PEACH Program and Haven Toronto (a drop-in center for elderly homeless men). It provides gifts as a psychosocial intervention to address suffering and to support homeless individuals with their end-of-life journeys. Good Wishes was featured in a CBC story that received international attention during the 2019 holiday season.

Training the next generation of palliative care physicians

The PEACH team offers a unique education opportunity for medical trainees (medical students, residents and fellows) to help build skills to provide palliative care for people experiencing homelessness. ‘Palliative Care in the Inner City: Integrating Social Accountability and Clinical Care for Marginalized Populations’ is an elective for medical trainees that provides real-life training in caring for people who experience homelessness. The elective training opportunity integrates clinical palliative care of structurally vulnerable populations with advocacy and social accountability concepts. The elective is now a mandatory learning experience by the University of Toronto’s Division of Palliative Care for future palliative care physicians in-training.

Contributing to a global community of compassion

The PEACH care model has inspired similar programs in cities across Canada and worldwide and led to the development of Journey Home Hospice, Toronto’s first hospice for people experiencing homelessness.

There’s a growing recognition of the limits of healthcare delivery to structurally vulnerable populations. PEACH is an example of how collaboration between healthcare and social services can address complex health and social problems.

The PEACH team has inspired similar programs in other cities, including Edmonton, Calgary, Victoria, Seattle and as far away as Australia.

Additional resources on Dr. Naheed Dosani, PEACH and palliative care for vulnerable Canadians:

•  Follow Dr. Dosani on Twitter or Instagram

• Listen to Dr. Julian Abel’s  in-depth interview with Dr. Dosani on Survival of the Kindest podcast.

•  Too Little Too Late Study by Kelli I. Stajduhar, RN, PhD, FCAHS and Ashley Mollison, MA on behalf of the University of Victoria Equitable Access to Care Team

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The Lancet Commission on the Value of Death

Authored by: Dr. Libby Sallnow (Lancet Commission Member & PHPCI Vice President).

The Lancet Commission on the Value of Death is a radical new commission examining contemporary death, dying and grief globally. It began in 2018 with the premise that death, dying and grieving have changed significantly over recent generations, becoming progressively institutionalised and unfamiliar to communities. The overtreatment of some, with the parallel undertreatment of many more presents a paradox of modern death and dying and one requiring urgent attention.

 The Commission takes a broad, systems approach to understanding these challenges and draws on philosophical, religious, economic, political, social, cultural, and clinical perspectives to understand why these circumstances exist and crucially what can be done to challenge them. It presents a realistic utopia of how we may all live, care, die and grieve in the future, a radical but possible vision of change. It ends with a series of recommendations for civil society, policy makers and government, funders and researchers and healthcare systems to achieve this radical vision.

The report will be launched online on Tuesday 1st February 2022 in a free event run by The Lancet and details of this will be shared in the new year. There will be a further event in the UK on 1st March 2022 with both in-person and virtual options to participate.

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PHPC Tools and Resources

A collection of resources can be found on the PHPCI website, including toolkits, reports events, useful websites to name a few.

Website: https://www.phpci.org/tools

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Recently Released Resources!

British Columbia's new online hub for culturally adapted advance care planning resources

This online hub provides a wide range of resources to support advance care planning. Many of these resources are available in different languages.

Advance care planning resources tailored to people living with dementia and their family & friends

•  My Wishes, My Care: Advance Care Planning Information Booklet

This resource walks the reader through the three steps of advance care planning, Think, Talk, Plan. The booklet also contains two additional resources.

• My Wishes, My Care: Starting the Conversation

This resource is a worksheet of questions to help with thinking and talking about what matters most: values, beliefs, and wishes for future health care and personal care.

• What you need to know about standard representation agreements (section 7)

This resource is a guide to understanding the standard representation agreement.

• You’ve been asked to be a substitute decision-maker, now what?

This resource is a guide to understanding the role, rights, and responsibilities of substitute decision makers in British Columbia.

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World Compassionate Communities Online Symposium Recordings

On November 2 2021 PHPCI ran the first World Compassionate Communities Day online symposium. This was a truly international event with speakers from the UK, Canada, India, Africa, Australia and Europe, including special guests from the Integrated Health Team at the World Health Organization; Marie-Charlotte Bouesseau and Shamsuzzoha Babar Syed. The symposium was organised into four themes: Practice, Policy, Research and Evaluation, highlighting the latest developments in the public health and compassionate communities field.

Many thanks to all the session chairs and  all the speakers who gave their time to participate. PHPCI plans to run the symposium every two years (non conference year) and we look forward to the event growing and developing with the input of members. 

PHPCI members can access the recordings of the four sessions in the members section. 

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Resources from Pallium Canada

Recent Publications

Siden, E. G., Barwich, D., Carter, R. C., & Hassan, E. (2021). Part of the solution: A survey of community organisation perspectives on barriers and facilitating actions to Advance Care Planning in British Columbia, Canada. Health Expectations, 0, 1-10. doi:10.1111/hex.13390

Taels, B.,Hermans, K., Van Audenhove, C., Boesten, N., Cohen, J. & Declercq, A. (2021) How can social workers be meaningfully involved in palliative care? A scoping review on the prerequisites and how they can be realised in practice. Palliative Care & Social Practice, 15 https://doi.org/10.1177/26323524211058895.

Vanderstichelen, S., Pelttari, L. & Scott, R. (2021) Evaluating the EAPC Madrid Charter on Volunteering in Hospice and Palliative Care: reflections on impact. Progress in Palliative Care, https://doi.org/10.1080/09699260.2021.1964678

Johansson, T., Tishelman, C., Cohen, J., Eriksson, L.E. & Goliath, I. (2021) Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care. Qualitative Health Research, 31(10): 1904-1917. https://doi.org/10.1177/10497323211012986.

Aoun, S.M., Noonan, K., Thomas, G., & Rumbold, B. (2021) Traumatised, angry, abandoned but some empowered: a national survey of experiences of family caregivers bereaved by motor neurone disease. Palliative Care & Social practice, 15. https://doi.org/10.1177/26323524211038584.

Rumbold, B. & Aoun, S.M. (2021) Palliative and End-of-Life Care Service Models: To What Extent Are Consumer Perspectives Considered? Healthcare, 9(10): 1286. https://doi.org/10.3390/healthcare9101286

Rodeyns, J., Joson, A., Smets, T. & De Backer, F. (2021) The meaning of art in palliative care from the end users' perspective. Arts & Health, https://doi.org/10.1080/17533015.2021.1942094.

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In April 2022 the first Oxford Textbook of Public Health Palliative Care will be published. Edited by Julian Abel and Professor Allan Kellehear, it has 30 chapters and 44 authors from around the world. It is a comprehensive text, bringing together for the first time a complete picture of the whole field.

This is a book about the public health approach within palliative care. Often when the term ‘public health’ is used,  it is more usual to think about palliative care as part of the public health system – similar to the hospitals, nursing homes, community clinics but also the broader supports for population health such as sewerage and water purification systems or workplace health and safety. In universities, public health is often seen in terms of the surveillance sciences – epidemiology, health services research, computer modeling, or the bench sciences devoted to understanding disease. But in this volume of contributors, we are specifically addressing a newer and less recognized aspect of public health – public health practice methods such as education, health policy, community development, or social ecology. We are also specifically examining the role of the ‘new’ public health, sometimes also known as health promotion. Health promotion is a major departure from the emphases on surveillance, disease, and health services by placing its gaze and efforts on practice solutions, health and wellbeing, and community and civic involvement in healthcare – in this case, palliative care. This Oxford Textbook of Public health Palliative Care is an introduction to this dimension of practice.

The challenge for palliative care is to embrace a public health vision of practice. There is a necessity to shift from a service and clinical model of care for the dying and their caregivers, to a more inclusive model. This is a future model not merely defined by cause of death, age or diagnosis, but one that works for all people including those near and far, young and old, disadvantaged or disenfranchised, and in local or international settings. This is because the human impulse behind all care at the end of life is best realised through the social practice of compassion – a care for the other that is shared with others.

The text is divided into 6 sections.

Section 1: The Case for Public Health Palliative Care

The first section concerns making the case for the field of public health palliative care, exploring the demographic and epidemiological challenges, the social nature of dying and then reviewing the consequent necessary ways palliative care services can appropriately respond to developing a whole population community based approach

Section 2: Basic Concepts and Theory

The origins of public health palliative care are drawn out of the theory and practice of new public health. This history is examined and the individual principles are discussed in more detail: the meaning of health and wellbeing in palliative care, prevention, harm reduction, early intervention and the central importance of participatory relationships.

Section 3: Basic Practice Methods

Over the last 25 years, basic practice methods have evolved to the point at which they can be applied across whole populations and adapted to the different international settings. Compassionate communities and compassionate cities are discussed in detail. There are chapters on end of life literacy through public education, health policy and advocacy, health promotion in palliative care, application in primary care settings and digital applications.

Section 4: Population based approaches

This section starts with the principles of health service redesign. There are chapters on bereavement and loss using a public health approach, equity of care and structural vulnerability and public health palliative care practice in low and middle income countries.

Section 5: Evidence-Base

This section begins with an overview of the evidence supporting public health palliative care practice, followed by a chapter on the evidence base for naturally occurring networks of support at end of life. Use of health service research methodologies can be problematic in assessing public health palliative care and a chapter is devoted to discussing these difficulties. The final chapter of this section discusses economic perspectives of public health palliative care.

Section 6: Education and Training

The final section addresses pedagogical approaches to education, education for children and inclusion of public health palliative care in the United Kingdom palliative care specialist curriculum. The final chapter discusses the use of toolkits as a practical way of implementing public health approaches.

The contributory authors, often international experts in their own field, has been outstanding. The editors have been delighted with the quality of the writing and the depth of vision. Together, this volume is a remarkable collection of a whole new field of palliative care.

The public health approach to palliative and end of life care provides a way forward for a population based, equitable model. There are two guiding principles. The first is about how we look after each other in the last phases of life. This is not just the care we give to the person with the illness who we know and love, it is also about the caring networks of family, friends, neighbours and community members who care for them and each other, recognising and celebrating the positive meaning and value of doing so. It is a truly social as well as a medical event, steeped in culture, history and practice. It is not confined to the harm reduction of symptom control, but fully recognises the positive aspects of love and friendship, the meaning that this gives to life and how we can all do this together.

The second principle is that of equity. If palliative care is going to move forward from a specialty that is confined to the lucky minority who can benefit from its help and support, then it has to take a population based, social approach. This cannot be dominated by and reliant upon professional care. Dying is so much more than something that is confined by professionalisation. Death, dying, loss and caregiving is everyone’s business. 

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Journal | Palliative Care and Social Practice

PHPCI has its own academic journal Palliative Care and Social Practice

The primary purpose of this peer-reviewed, open access journal is to raise the research and policy profile of a social model of palliative care. It encourages scholarly articles that challenge current discourse about the process of death, its current care models and practices, and of grief and bereavement. The journal welcomes articles from symptom science, clinical practice, and health services research. However, its aim is also to publish cutting-edge research from the realm of social practice - from public health theory and practice, social medicine, and social work, to social sciences related to dying and its care, as well as policy analysis, criticism, and cultural studies. The journal welcomes reports from work with under-represented groups, community development, and studies of civic engagement in end-of-life issues. The journal accepts a broad range of methodological designs – from trials to ethnography to analysis of existing sources.

The journal is supported by an international editorial board and is a member of Committee on Publication Ethics (COPE). All articles are listed on PubMed, PMC and Scopus, and are freely available to read and download.

Any general inquiries about the journal or about prospective submissions for our journal can be directed in the first instance to The Managing Editor, Georgia Patey – SAGE Publications Ltd, London, UK georgia.patey@sagepub.co.uk

View the submission guidelines for details on the submission process, article processing charge and formatting your manuscript.

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From PHPCI Council

On behalf of the PHPCI council, we extend good wishes for the coming months, and we look forward to seeing many of you at the 7th PHPCI conference in Belgium!

President Dr. John Rosenberg (Australia) | Term Ending 2023

Vice President Dr. Libby Sallnow (UK) Term ending 2023

Treasurer Luke Conlon (UK) | Term ending 2023

Membership Secretary Bonnie Tompkins (Canada) | Term ending October 2023

General Secretary Dr. Vicky Jones (New Zealand) | Term ending October 2023

Webmaster Dr. Kerrie Noonan (Australia) | Term ending October 2023

Journal Rep Prof Allan Kellehear (UK) | Term ending October 2023

Ordinary Member Dr. Andrea Grindrod (Australia) | Term ending October 2023

Ordinary Member Dr. Zipporah Ali (Kenya) | Term ending October 2023

Ordinary Member Dr. Eman Hassan (Canada) | Term ending October 2023

Early career researcher representative Dr. Daniel Lowrie | Term ending October 2023

Conference representative Prof Luc Deliens (Belgium) | Term ending October 2023

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Social media

For questions and inquiries please visit https://www.phpci.org/

Facebook https://www.facebook.com/PublicHealthPalliativeCare/

Twitter https://twitter.com/PHPalCare _________________________________________________________________

Do you have a story, event or resource that you’d like to share?

We would love to hear about your Public Health Palliative Care Project! Please send your experiences, stories, events or resources to be included in forthcoming Newsletters to Daniel Lowrie at daniel.lowrie@jcu.edu.au.

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Editorial Team

Dr. Andrea Grindrod and Dr. Daniel Lowrie. Thank you for the assistance of Dr. John Rosenberg and Dr. Kerrie Noonan with this edition. Thank you also to all article contributors for sharing your ideas and practice examples.

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