PHPCI Newsletter | Issue 6 | December 2022

_______________________________________________________________

FROM THE PRESIDENT

Hello to all members and friends of PHPCI!

It’s been an exciting year for the Association!

Despite its postponement, the 7th Public Health Palliative Care International Conference was successfully held in Bruges, Belgium. Congratulations and thanks go to Prof. Luc Deliens and Prof. Joachim Cohen for their hosting of this outstanding conference. The scientific and civic programs demonstrated the close links between so many stakeholders in public health palliative care and Compassionate Communities. Luc and his team also provided a pre-conference International Summer School in Ghent for early career and higher degree research scholars. This could become at least a biennial event scheduled with the PHPCI conferences, or even held annually – watch this space!

The publication of The Oxford Textbook of Public Health Palliative Care, co-edited by Dr Julian Abel and Prof. Allan Kellehear, provides a critical resource for the advancement of this field; congratulations too to the many PHPCI members and allies who were contributing authors. PHPCI Vice President, Dr Libby Sallnow, led the authorship of the Lancet Commission on the Value of Death, providing another essential resource for understanding our field, its current impact and its future potential.

Our newsletter continues to provide valuable information to our members and allies across the world and our arrangement with the EAPC PHPC Reference Group to alternate newsletters ensures optimal reach for both groups. The Association’s journal Palliative Care and Social Practice continues to build its influence in the field. The establishment of Guidelines for Endorsement of Compassionate Communities adds to the Compassionate Cities Charter in providing PHPCI’s support for communities who seek to align themselves to our goals. Those who wish to seek our endorsement can contact the General Secretary, Dr Vicki Jones, at info@phpci.org

In addressing a range of issues relating to governance of the Association, we have refreshed our approaches to how we operate.

Firstly, we have undertaken a fourth revision of our Constitution and this was approved at our AGM earlier this month. This new version is available on our website. Secondly, the disruption of COVID-19 brought about the postponement of the 2021 Conference until 2022. With conferences now being held on even years, the terms of office of Council members require re-alignment. A new schedule has been developed and approved; this realignment will offset the terms of the President and Vice-President, and half the Council members on a four-year cycle, to enable continuity of governance of the Association.

Further, we welcome four new members of Council. Dr Guy Peryer (UK) has been co-opted to Council and will help lead the Association’s promotion of research in public health palliative care. Council invited key stakeholder organisations to join as ex officio members for an initial term of two years. These stakeholders have close alignment to the goals of PHPCI and will promote dialogue and identify key opportunities for collaboration between our organisations. Prof. Luc Deliens (Belgium) has stepped down from his role as Conference Host representative following the Conference, however, he returns as the representative of the European Association of Palliative Care Public Health Palliative Care Reference Group. Dr Katherine Pettus (Spain) joins us as the representative for the International Association for Hospice and Palliative Care and Dr Stephen Connor (USA) is the Worldwide Hospice Palliative Care Alliance representative. We are very excited about the opportunities ahead.

Finally, I’m thrilled to welcome Prof. Steffen Eychmüller to PHPCI Council as the representative of the Organising Committee for the 8th Public Health Palliative Care International Conference! A date claimer is included in this newsletter and posted on social media; we will be posted shortly on our website, and further details will be added over time at the new conference website. Steffen and his team are already off to a flying start, with strong links with university groups, health services, relevant associations, and the City of Bern. In particular, PHPCI Council will work closely with the Organising Committee to ensure optimal access to the Conference for the greatest number of people.

I acknowledge the many people – members and allies of PHPCI alike – who contribute their time and energy to advancing the goals of PHPCI. I look forward to the continued growth of this important work and the increasing influence of the Association in global and local settings.

Best wishes,

_________________________________________________________________

Showcasing Public Health Palliative Care:

Highlights from 7th Public Health Palliative Care International Conference - Bruges

The 7th Public Health Palliative Care International conference (PHPCI) held in Bruges (Belgium) between September 20-23, 2022, centred on the theme of “Democratizing caring, dying and grieving: participation, action, understanding and evaluation”. The conference was hosted by the End-of-Life Care Research Group of Belgium and was organised in partnership with PHPCI, Compassionate Bruges, the EAPC Reference Group on Public Health & Palliative Care and the EAPC Research Network.

Within the three-day program, the conference organisers succeeded in their aim of bringing together innovators, researchers, practitioners, policy makers, and representatives of civic society in the public health palliative care approach. This was reflected in wide array of academic and practice-based presentations and workshops that were complemented by a rich artistic and cultural program, befitting of the beautiful, historical city of Bruges, in which the event was hosted. The scientific program offered numerous opportunities to develop and share knowledge concerning a variety of topic areas including, but not limited to community development and partnerships; death and grief literacy; compassionate communities evaluation; and diversity, inclusion, equity, and social justice. The cultural program was masterfully interwoven with the academic and practice agendas and provided a means through which the contributions of art to the compassionate communities movement could be exchanged, embraced, and explored.

Although the conference highlights are too numerous to detail in full, for many, one of the most memorable conference experiences involved their participation in ‘The Great Crossing’, during which lanterns were released along the canals of Bruges as a way of honouring and remembering deceased loved ones. This experience has been described exquisitely by conference attendee, workshop chair and member of the conference scientific committee, Professor Carol Tishelman who states: “…this conference was notable in breaking down divisions between ‘we’ and ‘them’. We shared our losses and sorrow in a collective show of emotion and strength with compassionate Bruges during the ‘Great Crossing’ on the last conference evening. This was one of the most profound experiences for me in this remarkable - and compassionate - conference that made great strides in integrating arts, science, and experience with emotion and thoughtful reflection.”

This PHPC International conference was very well attended, with approximately 380 people from 41 countries present at the event. This points to success in the aim to increase participation from Europe and non-English-speaking countries within PHPC International conferences. However, it will be important for this success to be built on for future conferences to ensure that people with an interest in public health palliative care from majority world countries are assured access to the wonderful opportunities for learning, connection and community building that PHPC International conferences afford.

It is clear that the learning and ideas sharing, and connections achieved through the 7th PHPC International conference will provide insight, creativity, and direction to help energise and shape public health palliative care initiatives over the coming years. The PHPCI council and membership thank the conference organisers for their hard work in developing and delivering such an excellent and rewarding conference program. With the 8th PHPCI conference having recently been awarded to Bern in Switzerland, the excitement can again, start to build in anticipation of this amazing event.

_________________________________________________________________

Delivering Palliative Care at the Doorsteps

Dr Deepak Sudhakaran, Specialist in Palliative Care & Community Medicine, Pallium India

“I eagerly await your monthly visits! Come again soon!”, says a beneficiary of our community based palliative care services. Many a times with a smile. Sometimes with tears in their eyes. This is not an isolated case, but something that our home care teams hear every now and then. If looked at carefully, this one statement brings out the many issues which are barriers to providing ‘total care’ to a person with serious health related suffering (SHS). Do the near and dear one’s contribute towards the wellbeing of the sufferer? Does this person have adequate access to palliative care services? Does this person have a source of income or a social security scheme which covers for the daily medicine needs and guarantees a minimum standard of living? Are the basic necessities of this person suffering from a life limiting illness being met? These are few of the many questions which our team faces & tries finding solutions to on a day-to-day basis. Often, what we see is a person with dis-ease living in desolation despite of being surrounded by people. Especially the scenario in Low- and Middle-income Countries (LMICs) is grim with the answers to most of the above questions being in the negative.

In the small southern state of Kerala, India, this realization dawned early upon us that attention and addressing is needed not only for physical health but also towards the psycho-social, spiritual and other aspects of a patient. These are dimensions which almost always and conveniently so, cannot be explored within the four walls of an out-patient clinic or an operation theatre. In such situations, seeing the ‘person’ in the patient goes a long way in alleviating health related suffering. It is with this intention that Pallium India, a non-governmental, not-for-profit organization (NPO) was started nearly two decades ago with the vision to integrate palliative care in all health care so that every person has access to effective pain relief and quality palliative care along with disease-specific treatment across the continuum of care. This is being done through delivery of services, education, building capacities, policy, research and advocacy to relevant stakeholders.

In this endeavor, creating self-reliant & self-sustaining compassionate communities has been the core of our activities and it is our community volunteers who with their good will and inclusive approach have managed to breathe life into the above-mentioned aspirations. Pallium India regularly conducts training sessions for such interested volunteers which includes members from all sections of society. Be it school children who kept aside a handful of grains everyday which they accumulate at the end of the month and donate to the local palliative care team for distribution to those in need or people retired from work making periodic visits to homes of those living alone to provide some respite from loneliness or college students renovating and painting the dilapidated houses of a patient or a working individual willing to support the educational needs of the children in a family adversely impacted by disease. Everyone has something to contribute which will allay suffering. This is what added beauty to the work which was being done. This is what ensured that palliative care doesn’t end up just as ‘health care’ but rather becomes ‘human care’.

An ongoing epidemiological transition rapidly increasing the burden of noncommunicable diseases combined with an ageing population where 1 in 6 people will be above 60 years of age by 2030 as per the World Health Organization, points us to a future in which SHS is going to be widespread. The current percentage of access to pain relief and palliative care services remains in single digits with the brunt of health inequities worst impacting LMICs. Depending on an already overwhelmed health infrastructure may not be sufficient to address the huge demand for quality palliative care services. Hence, a decentralization of care by further involvement of various stakeholders like NPOs, volunteers and self-help groups from within the community becomes of paramount importance. When we think about reaching out to people with SHS and ensuring compassionate care & cure to such huge numbers, there is one quote which comes to mind, “The power of a community to create health is far greater than any physician, clinic or hospital.”

_________________________________________________________________

Compassionate Ottawa - Changing thinking & strengthening capacity

Jim Nininger, Co-Founder of Compassionate Ottawa

Compassionate Ottawa is a community based, volunteer driven organization with a dual aim: to change the way we think about living well, dying, death, grief and caregiving; and to strengthen the capacity of people to care for each other in times of serious illness and loss.

Three fundamentals guide our work: community development and capacity building, end-of-life as a public health issue, and a social model of caring. As well, we have established a core set of values, which includes equity, diversity and inclusion. We are an independent organization and work in collaboration with other community groups, social service agencies and health care providers.

In the early period—spring 2017—our oversight was small—a four-person steering committee supported by a growing group of volunteers. As we grew, we needed to create a not-for-profit structure with a board of directors. Our volunteer group, which now numbers 80, became our advisory group and meets periodically to help set our priorities. As background, Ottawa, the capital of Canada, has a population of one million and is a bilingual community.

Our first program was advance care planning, which includes having difficult conversations about end-of-life issues. This was followed by work in grief and bereavement. Both of these programs have teams of trained volunteers who offer workshops in French and English, both directly to the public and through collaboration with our partner organizations. In terms of the Compassionate City Charter, we have launched initiatives in workplaces, schools and faith communities.

One of our newer programs is “Conversations with Leaders.” These Conversations invite the public to take part in a discussion between a Compassionate Ottawa volunteer and a recognized leader on the subject of compassion. Leaders include local, national and international experts. All previous Conversations can be accessed on our website under the ‘Resources’ tab. Announcements of future events are located under the ‘Events’ tab. Join our mailing list to receive early notification of upcoming events.

Recently, we launched a needs assessment that will advise us on how we can best reach out to communities that are currently not well served so that our work can be truly reflective of Ottawa’s tremendous diversity.

Compassionate Ottawa is pleased to have sponsored two significant projects.

The first project titled “Let’s Talk About Later Life” developed and evaluated three community education resources to raise awareness of end-of-life issues and to prompt people to prepare for giving and getting help in later life:

1. A collection of short digital stories that shares the experiences of 7 story tellers describing giving and receiving help in later life.

2. Book Chat resources based on the book “Talking about Death Won’t Kill You”, by Dr. Kathy Kortes Miller, which includes host and participant guides.

3. A short video on The Compassionate Ottawa story, which is augmented with a companion Handbook and Discussion Guide.

These resources can be accessed on both the PHPCI and Compassionate Ottawa websites and are available in English and French.

The second project, HELP (Healthy End of Life Project) Ottawa, is a community-based, participatory action research initiative. The goal of the project is to help people live at home or in the community as long as possible. It is being implemented in four sites in Ottawa: two faith communities and two community health centres. The HELP Ottawa research team works with each site in helping them determine their needs. Once this is completed, the sites work with Compassionate Ottawa volunteers, and the research team, to design and implement programs to meet their needs.

One of the research goals is to disseminate the findings of the project to support other communities wishing to implement a public health approach to end-of-life care. It is anticipated that this material will be available in the later part of 2023.

HELP Ottawa is based on a similar project developed by the Public Health Palliative Care Unit at Latrobe University in Melbourne, Australia. Funding for the HELP Ottawa project has been provided by a private foundation and the research is being carried out by the School of Social Work at Carleton University.

We are pleased with the progress Compassionate Ottawa has made in a relatively short period of time. The need for the work we are doing is even greater today than it was when we started in 2017. The pandemic brought to light the serious challenges that all communities have with issues of dying, death, loss, grief and caregiving. We are redoubling our commitment to enable our citizens to live as well as they can for as long as they can with supports from the community to make this possible.

_________________________________________________________________

Going Digital in Public Health Palliative Care: An experiment in digitising practice and research using the HELP framework developed in Australia.

Dr Andrea Grindrod, Director Public Health Palliative Care Unit, La Trobe University

Niki Read, Engagement and Impact Coordinator, Healthy End of Life Program

2022 saw ‘HELP Digital’ go live with phase one of an integrated digital platform to assist in building and evaluating public health approaches to illness, dying, death and bereavement. The Healthy End of life Program (HELP) website enables a coordinated approach to research, education, and practice in our sector, and the Healthy End of Life Planning (HELP) App (currently available in Australia only*) while supporting communities at end of life, will generate much needed community-based data on the social and practical elements of end-of-life care. Both technologies are now operational thanks to the expanding HELP team at La Trobe University’s Public Health Palliative Care Unit, and to the collegial support of our partners.

HELP Digital is informed by the Healthy End of Life Program, an evidence-based framework based on the health promotion principals of the Ottawa Charter for Health Promotion. The HELP framework, whether implementing a HELP specific program or another public health palliative care (PHPC) intervention can be used to inform, implement, engage, measure impact, and evaluate projects, in Australia or in any country around the world. The website will be a centralised portal for users of the HELP framework and future partners and collaborators in PHPC.

HELP Digital is an integrated approach, aiming to:

In 2023, HELP Digital will expand to include a diverse and interactive suite of practice-based resources, and education and training opportunities. This aims to inform evidence-based practice with a health promotion lens and to build capacity in practitioners involved in supporting community members. We will also be continuing current research with the development of a set indicators for the HELP Framework, operating as a digital reporting system, to understand and demonstrate the impact of complex PHPC interventions on end-of-life experiences.

The Healthy End of Life Program has successfully been implemented in disability, local government, neighbourhood house and palliative care settings using the ‘setting reorientation’ strategy of health promotion approaches. We are now looking forward to re-engaging those sectors through HELP Digital with an interest in understanding how a PHPC digital system might optimise sustainable outcomes with our partners within a variety of settings. The aim is to centralise the production of individual reports for partners to demonstrate impact in addition to generating national PHPC data.

*If you interested in using the Healthy End of Life Planning App in your region or partnering with HELP Digital in 2023, please reach out to me at a.grindrod@latrobe.edu.au

_________________________________________________________________

Congratulation to Professor Samar Aoun!

Congratulations to Professor Aoun who has been named winner of the Western Australian 2023 Australian of the Year Award. Professor Aoun is the Perron Institute Research Chair in Palliative Care at the University of Western Australia, and Adjunct Professor at La Trobe University. Professor Aoun is a well know and highly respected member of the public health palliative care community. Her extensive research career has helped advance knowledge, practice, and policy both within Australia and internationally concerning public health palliative care, particularly in relation to under-served population groups including people with motor neurone disease and dementia, terminally ill people who live alone, and family caregivers at end of life.

Professor Aoun has provided considerable leadership and allyship within the compassionate communities movement through her advocacy for approaches to end-of-life care that empower people and communities. In recent years, she has worked to support the development of compassionate communities as co-founder of the South West Compassionate Communities Network. She also leads the Compassionate Connectors Program, an initiative established to identify, coordinate, and mobilise ‘caring helpers’ in providing practical and social support to dying persons and their caregivers. Her research into social models of bereavement support has also helped in guiding and strengthening the compassionate communities around the world.

On an international level, Professor Aoun is a member of Public Health Palliative Care International as well as the Public Health Palliative Care reference group of the European Association of Palliative Care, and the European Association of Palliative Care task force on Last Aid and Public Palliative Care Education. Professor Aoun also chars the MND Association of Western Australia and is a director on the board of MND Australia and member of the scientific committee of MND Research Australia.

On behalf of the public health palliative care international membership and community the PHPCI council offer heartfelt congratulations to Professor Aoun on her receipt of the Western Australian 2023 Australian of the Year Award; an accolade that she richly deserves. We look forward to her continued contributions in supporting and shaping the development of public health approaches to palliative and end-of-life care.

Upcoming Events

8th Public Health Palliative Care International Conference awarded to Bern, Switzerland in 2024!

With the curtains closed on the highly successful 7th Public Health Palliative Care International Conference in Bruges, planning is already underway for the next iteration of this exciting and important event. The Public Health Palliative Care International Council are very pleased to announce that the 8th Public Health Palliative Care International Conference will be held in the city of Bern, Switzerland and will be held between 22nd and 25th October 2024.

The conference is themed around building bridges between neighbourhoods and cities, regions and nations, health services and communities, and will serve as an opportunity to advance the philosophy, values, concepts and methods of health promotion into palliative care.

Watch this space for further updates regarding conference planning and development!

_________________________________________________________________

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

 _________________________________________________________________

Recently Released Resources!

The full podcast series can be accessed here.

Specific episodes covered in this excellent podcast series include:

• Carers - How to keep yourself well

• Small and tasty - Tempting someone to eat

• Pills and potions - Managing the meds

• Grief and loss

• Carer and patient fatigue

• Rest, relax, sleep

• What to expect at end of life

• Advance care planning

• What does grief look like?

• Finding meaning - The importance of self

• Breathlessness

• Different forms of grief and some helpful tools

• Myths around morphine and other meds

• Legal matter

• Funeral planning

• Guided relaxation techniques

• Guided relaxation and visualisation

_________________________________________________________________

‘We are Here’ - Video Poem

'We Are Here' is a video poem, written and narrated by Dean Parkin and produced by Poetry People.

Halesworth-based charity the Pear Tree Fund commissioned Poetry People in 2022 to create a video poem to raise awareness of how Compassionate Communities can offer vital practical and emotional support to local people at challenging times of need.

The poem can be accessed here.

_________________________________________________________________

‘You’ll be fine’

This audio play highlights the importance of close relationships in helping us live well until we die and reducing the fear and stigma surrounding the end of life. It was commissioned by INK, The Pear Tree Fund and the National Institute for Health Research(NIHR) Applied Research Collaborative (ARC) East of England.

The audio play can be accessed here.

_________________________________________________________________

Recent Publications

Aoun, S. M., Richmond, R., Gunton, K., Noonan, K., Abel, J., & Rumbold, B. (2022). The Compassionate Communities Connectors model for end-of-life care: implementation and evaluation. Palliative Care and Social Practice, 16, 26323524221139655–26323524221139655. https://doi.org/10.1177/26323524221139655

Aoun, S. M., Richmond, R., Noonan, K., Gunton, K., & Rumbold, B. (2022). “The more you give, the better it is for you. You know the reward is greater than the effort”: the Compassionate Communities Connectors’ experience. Palliative Care and Social Practice, 16, 26323524221139874–26323524221139874. https://doi.org/10.1177/26323524221139874

Noonan, K., Rumbold, B., & Aoun, S. M. (2022). Compassionate community connectors: a distinct form of end-of-life volunteering. Progress in Palliative Care, (ahead-of-print), 1–10. https://doi.org/10.1080/09699260.2022.2090051

Quintiens, B., Smets, T., Chambaere, K., Van Den Block, L., Deliens, L., & Cohen, J. (2022). Researching two Compassionate Cities: study protocol for a mixed-methods process and outcome evaluation. Palliative Care and Social Practice, 16, https://doi.org/10.1177/26323524221137601

Seitz, K., Cohen, J., Deliens, L., Cartin, A., Castañeda de la Lanza, C., Cardozo, E. A., Marcucci, F. C., Viana, L., Rodrigues, L. F., Colorado, M., Samayoa, V. R., Tripodoro, V. A., Pozo, X., & Pastrana, T. (2022). Place of death and associated factors in 12 Latin American countries: A total population study using death certificate data. Journal of Global Health, 12, 04031–04031. https://doi.org/10.7189/jogh.12.04031

Vandenbogaerde, I., Cohen, J., Hudson, P., Van Audehove, C., Deliens, L., & De Vleminck, A. (2022). Support from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey. Palliative Medicine, https://doi.org/10.1177/02692163221135032

_________________________________________________________________

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.

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 upcoming PHPCI events!

Full members

• President - Dr John Rosenberg (Australia). Term Ending 2023.

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

• General Secretary - Dr Vicki Jones (New Zealand). Term ending October 2023.

• Treasurer - Luke Conlon (UK). Term ending 2023.

• Membership Secretary - Bonnie Tompkins (Canada). Term ending October 2023.

• General Member (Webmaster) - Dr Kerrie Noonan (Australia). Term ending October 2023.

• General Member (Newsletter) - Dr Andrea Grindrod (Australia). Term ending October 2023.

• General Member (Research) - Dr Guy Peryer (UK). Term ending November 2024.

• General Member (Early Career Research) - Dr Daniel Lowrie (Australia). Term ending October 2023.

• General Member - Dr Zipporah Ali (Kenya). Term ending October 2023.

• General Member - Dr Eman Hassan (Canada). Term ending October 2023.

Ex officio members

• Journal Representative - Prof Allan Kellehear. Term ending October 2023.

• EAPC PHPC Representative - Prof Luc Deliens. Term ending November 2024.

• IAHPC Representative - Dr Katherine Pettus. Term ending November 2024.

• WHPCA Representative - Dr Stephen Connor. Term ending November 2024.

• Conference Representative - Prof Steffen Eychmüller. Term ending November 2024.

_________________________________________________________________

Social media

For questions and inquiries please visit our PHPCI website, by clicking here.

For Facebook - click here

For Twitter - click here

For Linkedin - click here

_________________________________________________________________

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.

_______________________________________________________________

Editorial Team

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

_________________________________________________________________