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PHPCI Newsletter | Issue 3 | August 2021 _______________________________________________________________ FROM THE PRESIDENT Greetings to all PHPCI members and allies across the world! The initial shock and disruption wrought by the pandemic has given way to something more persistent in our communities and countries. For many, day to day life remains fraught, stressors maintain their pressure on our social and health systems, and the loss and grief of so many grows every day. It is in these circumstances that public health palliative care approaches demonstrate their value. In this edition of the PHPCI newsletter, a number of contributors from around the globe demonstrate their activities in building compassionate communities and promoting PHPC. Please take a moment to read about work being done in Canada, UK, Ireland, Kenya and Australia. All the more reason to build the evaluation data of PHPC. There are opportunities to showcase and disseminate evaluation outcomes through the PHPCI journal, Palliative Care and Social Practice, and the 7th Public Health Palliative Care International Conference in Bruge, Belgium, in September 2022. The Call for Abstracts for the conference is now live. More information about these is in this newsletter and on the PHPCI website. I’m delighted to bring your attention to the recent announcement of the inaugural World Compassionate Communities Day and Symposium. Chasing the sun across the world, PHPCI will facilitate an online, rolling showcase of Compassionate Communities work across time zones. You are invited to follow the links to the registration page where you can express your interest in participating as a contributor or delegate. Keep an eye on information to come in the months ahead. The outcome of our nominations process for PHPCI Council members will be circulated soon. If an election is required, members will be duly notified in order to vote. Please remember that there are a number of ways you can contribute to the work of this Association – as a Council member, certainly – but as PHPCI members and allies, you have much you can contribute to advancing PHPC. Please contact the General Secretary at info@phpci.org if you have any ideas about how to contribute. Finally, we have made some changes to our website. Please make sure you add this new address to your favourites! On behalf of the Council, I hope you are safe and well, and where this is not the case, that you are deeply embedded in supportive and compassionate circles of care.
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Dr John Rosenberg RN PhD President, Public Health
Palliative Care International |
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Dear members and friends of PHPCI, The Council of Public Health Palliative Care International is very excited to announce the inaugural World Compassionate Communities Day. Over the past decade or so, in many places around the world, people have come together to build Compassionate Communities to support those experiencing dying, death, caregiving and grief. This global movement has grown from strength to strength. The time is right to celebrate the movement with its own day of recognition! World Compassionate Communities Day aims to build on the momentum of the growing number of Compassionate Communities projects and programs, highlight the work of members and member organizations around the globe, and continue to mobilise and connect people through local compassionate actions related to dying, death, caregiving and grief. Chase the morning around the world. This online event will ‘chase the morning’ across the world’s time zones, starting in Australasia, and moving west across Asia, Africa and Europe, until its conclusion in the Americas. It is a rolling forum for Compassionate Communities to showcase who they are, what they do, who they help, and how they can be created through sharing information, highlighting current initiatives, and demonstrating supportive tools. This can inspire and motivate others to get their own initiatives going. Death, dying, loss and care is everyone's responsibility. What is Compassionate Communities? Click HERE and the link will take you to a short video by the Lien Foundation. Compassionate Communities are a core part of public health approaches to palliative care, end-of-life care, and bereavement. Conceived by Prof. Allan Kellehear in the mid-2000s to highlight the power of communities in the care of people at end of life, their families and carers through the experiences of illness, dying, death, caregiving and grief. Compassionate Communities know that everyone can be touched by these issues at any time and are capable and ready to help. The inaugural #WorldCCDay on 1st November will culminate in an online symposium on 2nd November 2021, where leaders in Public Health Palliative Care, Compassionate Communities, and related areas will explore contemporary and future issues. Global movement, local actions. This is where YOU come in. This is your moment to share with a worldwide audience what your community has been doing, to encourage others to join your local actions, to support your advocacy at government levels, and to inspire communities around the world with the joy, simplicity and power of community action at the end of life. What next? Join in World Compassionate Communities Day 2021! Save the dates: 1st November 2021 World Compassionate Communities Day 2nd November 2021 World Compassionate Communities Day Symposium Most importantly, get talking with your local community! How do you want to celebrate and promote the work you are doing? How can you harness the momentum to take further action? What have you learnt along the way? What tools are you using? What stories could you share about the difference you are making? ________________________________________________________________
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Conference Update from Prof Duc Deliens In order to bring together the state of the art in science and practice of public health and palliative care, Public Health Palliative Care International is organizing every second-year a world congress. The last PHPCI2019 congress was organized in 2019 in the Blue Mountains in Australia and the next PHPCI2022 will be held over a 4 day period, from Tuesday 20 to Friday 23 September 2022, in the heart of the beautiful historical city of Bruges, Belgium. 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. The theme for the 7th PUBLIC HEALTH PALLIATIVE CARE INTERNATIONAL CONFERENCE is ‘Democratizing dying, death and care: participation, action, evaluation and understanding.’ The conference brings together leading innovators, researchers, practitioners, policymakers, representatives of civic society in the public health palliative care approach. There is a significantly growing body of evidence about public health approaches at the end of life and this conference signals a new era for international research and practice. The PHPCI2022 conference will provide a critical platform for sharing best-practice examples and evidence from research from around the world and across Europe. We are calling for papers, workshops and posters addressing one of the following themes: Designing and supporting compassionate communities Evaluating compassionate communities Settings approaches (eg compassionate workplaces, schools) Public education and social marketing Building connections and partnerships Everyday ageing, dying and grieving Health promotion and end of life care Diversity and inclusion around the end of life Empowerment of patients, carers, volunteers Social change: power and practices Design and social innovation Lessons learnt in the COVID-19 pandemic, post-pandemic ideas Cultural practices Spirituality and compassionate communities
The main conference venue will be the brand new Bruges Meeting & Convention Centre (www.brugge.be/BMCC). The building will open its doors in January 2022 and is within walking distance from most hotels and city sights. More info at the conference website: https://www.endoflifecare.be/phpci2022 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
Submit your abstract HERE ________________________________________________________________ PHPCI Webinar SeriesDate: September 21st, 2021 Time : Vancouver – 3pm Ottawa – 6pm Dubbo, Aus – 8am
Title: Compassionate Communities Index and Death Literacy Index: Tools to increase your understanding Description: This webinar will increase your awareness of the Compassionate
Communities Index and the Death Literacy Index and how to use these tools
within your Compassionate Communities work. Dr. Eman Hassan from British Columbia Centre for Palliative Care and Dr. Kerrie Noonan from the Death Literacy Institute will provide the participants with a better understanding of the tools, how they can use them and where to access them. To register for this webinar, click here (link to PHPCI website)
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NEWS FROM AROUND THE WORLD!
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CanadaCatalyst for Compassion Responds to A Once-in-A Generation Challenge Planting seeds for compassionate communities In British Columbia, Canada, the compassionate communities’ movement was sparked in 2016 by the BC Centre for Palliative Care (BCCPC) with the endorsement of over forty community-based organizations as well as key palliative care and public health leaders. A compassionate community is a community of people who plays an active role in supporting those affected by a serious illness, caregiving, dying, and grieving experience. Members of a compassionate community recognize that these experiences are a part of everyone’s journey through life and that they can happen at any time, therefore supporting one another during these times is everyone’s responsibility.
The movement was lit by the launch of the BCCPC’s Seed Grant Program which was designed to inspire, engage and empower community-based organizations to initiate, sustain or expand a compassionate community initiative. Recipients of BCCPC’s seed grants get much more than a financial boost. The community organizations are also supported with access to training resources, implementation and evaluation tools, ongoing coaching and guidance from a community development expert and peer networking opportunities. By connecting people to resources, raising awareness about end-of-life issues and building supportive networks, many of the challenges common with serious illness – social isolation and access to psychosocial supports closer to home – are mitigated by the growing compassionate communities in British Columbia.
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Through an annual cycle of seed grants, over 100 compassionate community initiatives have received this important support, with at least half located in BC’s rural, remote and Indigenous communities. |
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BC Centre for Palliative Care is a not-for-profit provincial organization founded in 2013 with a mandate to advance the practice of palliative care and help British Columbians affected by serious illnesses to have the best possible quality of life. BCCPC meets this mandate through a triple-pronged approach: promote person-centred care for those affected by serious illness; support education, innovation, and integration of the palliative approach to care; and catalyze the spread of compassionate communities. COVID highlights the need for compassion When the global pandemic arrived in early 2020, it brought with it significant challenges to health and community care providers, with service interruptions to individuals and families , and the uncertainty of when those interruptions would be lifted. The pandemic has created an unprecedented need for compassion, social connectedness, awareness of end-of-life issues and supports closer to home. BCCPC’s COVID response The best way to meet providers’ needs is to know what those needs are. BCCPC’s COVID response started in April 2020, with asking questions: seeking feedback from the frontlines of both health care professionals and community-based organizations. Community-based organizations were invited to share their experiences with service interruptions and other challenges arising from COVID-19. A group of 20 organizations (65% from hospice organizations) participated in a wide-ranging discussion about their unique needs during the pandemic; the challenges in service delivery; the strategies for success; the gaps in resources; and the potential roles for BCCPC to support the organizations’ work in the time of COVID-19. The discussion highlighted the impacts of social isolation, especially isolation at the time of death and complex grieving. In response, a few months later the BCCPC announced a special funding cycle of its Seed Grants Program to provide immediate support to community-based organizations that would enable them to adapt, initiate, or continue to deliver critical compassionate care supports for isolated or frail seniors and those living with and dying from serious illnesses and for their families. The COVID-specific seed grant cycle supported over 20 compassionate community initiatives, supporting individuals and families throughout the province who have been disproportionally impacted by the pandemic. Compassionate communities in the media! During the pandemic, Compassionate communities’ efforts across British Columbia have gained increasing attention from local and national media. A few months ago, a video by the Canadian Broadcasting Corporation (CBC) showcased one of the compassionate community initiatives that support British Columbians with the challenges brought by the pandemic. The Intergenerational initiative was initiated in 2020 by the Compassionate Neighbourhood Health Partners Society in Chilliwack, a suburban city with 83,790 residents. The initiative builds friendships between young adults and older adults to break down isolation and loneliness during the pandemic. An ongoing movement COVID-19 uprooted the daily lives of people world-wide and has presented a once-in-a-generation challenge for individuals, governments, health care and community-based organizations. It has also brought into sharp relief the benefits of compassionate community initiatives, and the appetite for more local supports for those living with the effects of serious illness. BCCPC continues to be a catalyst for creating connections, helping to build compassionate communities in BC, and championing the provincial movement beyond those borders too. For more information To read about all of the ways BCCPC met the COVID-19 challenge, click here. For the BCCPC’s Compassionate Community Toolkit which includes everything needed to guide community groups on their journey to create a compassionate community initiative to help those affected by serious illness and end of life click here.
For inquiries, please contact Dr. Eman Hassan at ehassan@bc-cpc.ca ________________________________________________________________ IrelandA public health approach to palliative care in Ireland By Sonja McIlfatrick, Deborah Muldrew, & Brendan O’Hara The application of a public health approach in palliative care has been recognised as a key priority, internationally, nationally, and regionally. Across the two jurisdictions on the island of Ireland (Republic of Ireland and Northern Ireland), efforts have been made to develop and promote a public health approach to palliative care in policy, research, and practice. A series of initiatives have been progressed over the last number of years in this area and some examples of these are outlined below. These emphasise the importance of engaging with key stakeholders such as policymakers, the public, hospice and clinical care providers, and researchers in order to take forward this agenda. To better understand a public health approach to palliative care, a Briefing Paper was developed in partnership with the Palliative Care in Partnership Programme and Department of Health. This involved the identification of a shared definition1, which has been agreed for use in Northern Ireland. Following on from this, and to generate ideas, energy, and enthusiasm for further development of a public health approach to palliative care, a Round Table event with key stakeholders’ was held in 2019. Hospices, health and social care organisations and universities across Ireland have been working together to engage with and influence policymakers. For example, when the Government draft Outcomes Framework (a vision for society guided by the aim of improving wellbeing for all people) was under consultation in 2021, the All Ireland Institute of Hospice and Palliative Care’s (AIIHPC2) response used a public health approach to highlight the need for a greater focus on palliative and end of life care and bereavement support, including providing opportunities for conversations around death, dying, loss and care to the Minister for Health. Engaging the public is central to a public health approach, and Palliative Care Week has been a core outreach effort led by the AIIHPC since 2014 to raise awareness and increase understanding of palliative care. Central to the week are personal experiences. Sample population surveys have informed public messaging, most recently in 2020. Palliative Care Week is supported across the health and social care systems, including at Government Minister level across Ireland north and south, and across communities. The Palliative Care Week 2020 Report is available here. Researchers are informing the new regional Advance Care Planning policy for
adults in Northern Ireland, promoting end-of-life care as everyone’s
responsibility within a public health framework. A research team at Ulster
University have explored public awareness of palliative care and advance care planning; key findings include the need to normalise conversations about future care, starting conversations earlier and before a medical crisis occurs, developing core messages for consistent use with the public, and the need for training for health and social care professionals. Knowledge, attitudes, and perceptions of university students (aged 18-29) towards palliative care were also explored through a survey (n=859) and interviews (n=24). This study concluded that young people are ready to engage with palliative care, and public health initiatives should both engage and inform this young population. To better understand a public health approach to palliative care, a Briefing Paper was developed in partnership with the Palliative Care in Partnership Programme and Department of Health. This involved the identification of a shared definition1, which has been agreed for use in Northern Ireland. Following on from this, and to generate ideas, energy, and enthusiasm for further development of a public health approach to palliative care, a Round Table event with key stakeholders’ was held in
2019. Hospices, health and social care organisations and universities across Ireland have been working together to engage with and influence policymakers. For example, when the Government draft Outcomes Framework (a vision for society guided by the aim of improving wellbeing for all people) was under consultation in 2021, the All Ireland Institute of Hospice and Palliative Care’s (AIIHPC2) response used a public health approach to highlight the need for a greater focus on palliative and end of life care and bereavement support, including providing opportunities for conversations around death, dying, loss and care to the Minister for Health. Engaging the public is central to a public health approach, and Palliative Care Week has been a core outreach effort led by the AIIHPC since 2014 to raise awareness and increase understanding of palliative care. Central to the week are personal experiences. Sample population surveys have informed public messaging, most recently in 2020. Palliative Care Week is supported across the health and social care systems, including at Government Minister level across Ireland north and south, and across communities. The Palliative Care Week 2020 Report is available here. Researchers are informing the new regional Advance Care Planning policy for adults in Northern Ireland, promoting end-of-life care as everyone’s responsibility within a public health framework. A research team at Ulster University have explored public awareness of palliative care and advance care planning; key
findings include the need to normalise conversations about future care,
starting conversations earlier and before a medical crisis occurs, developing
core messages for consistent use with the public, and the need for training for
health and social care professionals. Knowledge, attitudes, and perceptions of
university students (aged 18-29) towards palliative care were also explored
through a survey (n=859) and interviews (n=24). This study concluded that young people are ready to engage with palliative care, and public health initiatives should both engage and inform this young population. Shared definition of a Public Health Approach to Palliative Care A public health approach to palliative care recognises the role of society and community in enabling and supporting people living with life-limiting conditions, and those important to them, to live well with flexible, holistic and person-centred care based on positive and collaborative partnership. A public health approach to palliative care will involve working collaboratively to: Increase awareness, understanding and discussion around palliative care through education and information; Create and enhance networks across communities and sectors to support people living with a life-limiting illness and those important to them; Encourage people to think about and plan for their future physical, emotional, social, financial and spiritual needs.
The All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a collaborative of hospices, health and social care organisations and universities on the island of Ireland, AIIHPC advances education, research and practice to improve palliative care and has supported the development of a public health approach to palliative care since it was set up in 2010. To support our progress in the application of a public health approach in palliative care, connections are being developed across Europe. We have strong ties to the European Association for Palliative Care (EAPC) Reference Group on Public Health and Palliative Care and were invited to host the ‘Public Health Research in Palliative Care: Towards Solutions for Global Challenges’ Seminar in November 2020. The seminar included live presentations from leading researchers in public health and palliative care from Northern Ireland, Scotland, Belgium, Australia, Netherlands, and Sweden. Moving forward, we will continue to explore how a public health approach to palliative care can be woven into society as a normal conversation through education and engagement initiatives.
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From left to right: Professor Sonja McIlfatrick, Professor of Nursing, Ulster University, Senior Investigator, All Ireland Institute of Hospice and Palliative Care. Dr Deborah Muldrew, Research Associate, Ulster University, Early Career Researcher, All Ireland Institute of Hospice and Palliative Care. Dr Brendan O’Hara, Programme Manager, All Ireland Institute of Hospice and Palliative Care
_____________________________________________________________________ United KingdomSurvival of the Kindest Podcast By Dr Julian Abel |
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In The Compassion Project, our book recounting the details of the Frome Model, my co-author Lindsay Clarke and I wrote about how compassion is part of our evolutionary heritage. Evidence for compassion being a natural part of us is to be found throughout animal evolution, particularly in mammals, especially in primates such as the bonobo monkey and even more so in the most social of animals, humans. This evidence can be seen in our brain structure, our genomics, our physiology, our biochemistry, our social behaviour and wherever else we care to look. If only this was taught in schools. The phrase survival of the fittest is some kind of British imperialistic nonsense coined by a philosopher around the time of Darwin called Herbert Spencer. It was the beginning of social Darwinism, which has terrible racist overtones. We argued that compassion is a natural part of us, a potential that we can all use. And it makes good sense to do so. Compassion lies at the heart of social relationships, which are more effective at keeping us healthy, happy and living longer than any other intervention we have, including giving up smoking drinking, diet, exercise and practically anything else you care to mention. Having made this argument, I thought it would be a good idea to seek out the evidence for this as it played out in people’s lives. I named the podcast Survival of the Kindest, a much more accurate and heart-warming phrase that survival of the fittest. Kindness has a profound evolutionary pressure. I have sought out the presence and absence of compassion and the consequences of both. What an amazing journey it has been so far, and there is plenty more to come. I started with people who are well known to members of PHPCI, Professor Allan Kellehear, Libby Sallnow and Kerrie Noonan amongst others. The range of people on the podcast has been fantastic and I have been fascinated to hear about their lives and their work. From talking to my sister about her award-winning documentary series Once Upon a Time in Iraq, I spoke with Waleed Nesyif about his experiences of growing up and being an interpreter in Iraq during the invasion. He, in turn recommended Adrian Hartrick about his life as a journalist in Lebanon. I have spoken with the incredible Julianne Holt-Lunstad about her ground-breaking work on social relationships and health. Meena Natarjan and Dipankar Mukherjee told us about running Pangea World Theatre, down the road from where George Floyd was murdered. We have heard about community development from Cormac Russell, Angela Fell and Paul Wright. The list goes on, as does the range of the guests on the podcast. I have found that sources of people’s life and work rests in their childhood experiences, whether this ends in criminality as described by Gary Crooks, or in great works, such as the study of wisdom by Dilip Jeste. It has been such a pleasure to talk to so many compassionate, caring and enlivened people. Long may it continue. Compassion is to be found in the ordinary and the exceptional. We swim in a sea of it and I am learning more all the time. Best wishes Julian ________________________________________________________________ KenyaBuilding palliative care capacity through an innovative, community-based initiative in rural Kenya A conversation between Stella Rithara, Founder and Director of Ongata Ngong Palliative Care Community and Daniel Lowrie, PHPCI Council
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Ongata Ngong Palliative Care Community (ONPACC) is a community-based organisation in Kajiado West - Kajiado County, Kenya. ONPACC aims to assist in the care of dying persons and their families through localised community capacity building, palliative care education and coordination of community-based volunteer supports. |
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The organisation’s founder and Director, Stella Rithara, commenced worked as a volunteer at Nairobi Hospice in 2004 and was shortly after seconded by the Government to continue the provision of this care. During this time Stella completed a Diploma in Palliative Care though Oxford Brookes University. The idea for ONPACC first emerged when Stella witnessed the high-quality palliative care provided to her own maternal aunt at Nairobi Hospice in 2006. Stella also observed, however, that the availability of care was missing when clients left the hospice and returned home to their rural communities. The lack of a care pathway meant that many service users had no-one to look after them when they returned home following their treatment. Stella also observed that clients from Kajiado West had to travel long distances to and from Nairobi Hospice for follow-up appointments and services. Stella set out to address these issues and in 2010, with the support of Kenya Hospices and Palliative Care association, approached Kajiado West Health Management Team to raise awareness of the importance of palliative care service delivery in rural settings. Stella then approached a number of professional and non-professional contacts with experience in palliative care, requesting that they assist with volunteering in the Kajiado West community. When establishing ONPACC, she also arranged visits to churches and other community groups within Kajiado West to discuss her ideas and vision for the initiative. As well as this, she liaised closely with the Kajiado West Health Management Team who were supportive of the initiative, recognising its value in enabling palliative care follow-up and in-home assistance to dying persons. As a result of the support of both the Kajiado West Health Management Team and the broader Kajiado West community, coordinated, connected and collaborative care is now able to be provided by the ONPACC organisation. In 2017, with the support of the Kajiado West Health Management team, ONPACC commenced an education program for Community Health Volunteers to raise their awareness of and knowledge about palliative care. Three cohorts, with a total of 31 Community Health Volunteers, have been trained to date. These volunteers each provide practical, social and emotional assistance to dying persons and their families within a particular geographic region of Kajiado West. Three geographic regions are currently covered by the volunteer workforce. With the continued assistance of the Community Health Volunteers and in partnership with the Kajiado West community, ONPACC is able to provide a range of services including individualised home help, older persons care, training, counselling and community health education. Stella states: “Our aim is not to treat them. It is to create awareness and to empower the community to take care of the patient who is discharged at home or even to support them emotionally.” The care that is provided is undertaken in coordination with the primary doctor to ensure that it best meets the needs of the service recipient. This collaborative approach highlights the way in which positive partnerships between formal health services and voluntary service providers can make a major contribution to improved community health outcomes. Further information regarding the various services provided by ONPACC can be found at their website https://www.onpacc.org/ and Facebook page https://www.facebook.com/onpacc/. In the future, Stella would like to build on the success of ONPACC with the goal of extending the service to the whole of the Kajiado West Sub-County and then to Kajiado more broadly. Continued awareness-raising by ONPACC to secure the support of more health care providers across the county will be critical to the success of this goal. Any growth in service provision will, of course, need a corresponding increase in the volunteer base to ensure that the care that is delivered is sustainable. Stella also sees an opportunity to partner with another hospice, either in Africa or elsewhere in the world, to share ideas, lessons and experiences about community-based care models of palliative care provision. Based on the passion, energy and leadership that Stella brings to public health palliative care, such a partnership is sure to be both valuable and rewarding. For inquiries about ONPACC, please contact Stella Rithara at mwaris48@gmail.com or ONPACC at info@onpacc.org ________________________________________________________________ AustraliaDying to Know Day | 8 August
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Dying to Know Day is a national public health campaign designed to create a shift in our cultural response to death. Our aim is to bring to life, conversations and community actions around death, dying and bereavement. Social and cultural change was the starting point for the birth of this successful public health campaign. Born from the incredible catalyst organisation Jane Tewson (Igniting Change) and the book ‘Dying to Know’, the co-founders Dr Kerrie Noonan and Nicole Endicott gave a call to action to all those keen to see a shift in the end of life space to take it forward. Kerrie’s leadership and drive through the first years, ensured from its very beginning that it was the collective vision of community minded individuals who made it what it is today. Every year, individuals and organisations invite their communities to gather in all sorts of ways. From ‘Death by Chocolate’ to cross-cultural panels. With belief in our mission and unwavering support from our catalysts, Igniting Change, each year we put out a call to action: “The conversation you’ve never had can take you places you’ve never been” is our campaign theme for 2021. Dealing with a life-limiting diagnosis and death is traumatic enough, but if we don’t connect through one of humanity’s only shared experiences, the emotional trauma can last years, and even through generations.
So, this year it’s all about talking, connecting, and giving people courage to broach the subject of end of life and death, because the rewards are nothing short of life-changing. And the very act of sharing hopes and fears before we are in that emotional moment, can create connections that simply wouldn’t have happened otherwise. The sharing of lived stories, long-forgotten dreams & regrets, even passing on the knowledge of what matters most. All of this lost, if we don’t start the conversation when we’re well. As events continue to be registered, our event holders share their creativity, humour and deep understanding of their community that shapes their event each year. Some of our events this year include: Many event holders are now familiar with the Plan B virtual option with the ever-changing landscape across Australia. We have events happening through to the end of the year to ensure the conversations continue across all communities. A quick browse through the list of upcoming events reveals warmth, authenticity, courage and, above all, humour in the ways in which Australians are facing their existential fears in increasing numbers. Dying to Know Day has become a rally point for the reluctant to join together and face the fear of emotion displayed, of ignorance revealed of stigma unleashed as we reconnect with the inevitability of our own death and of those we love and live with. The rising groundswell of connections augurs well for the impact of this urgent public health campaign in coming years. There is a hunger to engage with real values and real issues in today’s multicultural Australia (and indeed all other western democracies); living and dying well are common denominators which link all Australians across faiths, languages and country of origin. Reconciliation between First Nations and other parts of Australia can be facilitated through a shared understanding of the importance of honouring death rites which respects every individual, every family and every culture. A sense of otherness, whether engendered because of LGBTIQ identification, disability or any other difference, is profoundly irrelevant in the face of the truths about how we all want to live and to die. Dying to Know Day reminds us not only of how much we all share but about what is important in our affluent, complex society and how simple it is to honour what we all agree is important: conversation, choice, dignity and respect. In a post-covid Australia, the Groundswell Team will commence a three year strategic march for Dying to Know Day to become an observed series of events every August in every part of the country. We will aim to reach workplaces, health settings, households, communities, rural, remote and metropolitan. Our success will manifest in the ways we bring Australians into shared conversations about dying as an important part of living. Our impact will be the increased numbers of Australians exercising choice and control over how they want to live and how they want to die. Dying to Know Day will be the flagship for respect and dignity at end of life. If this excites you, join us at https://www.thegroundswellproject.com/dying-to-know-day and download our resources to get your conversation started. ________________________________________________________________ Reflection piece By Bruce Rumbold There are various methods by which public health palliative care practitioners can engage the community as partners in end-of-life care. The most straightforward may be to invite interested citizens to co-design end of life projects with us. These collaborations involve like-minded people in new community ventures; but the sustainability of such projects tends to rely on the persistence of those concerned individuals. A more complex, but potentially more sustainable, strategy is to develop partnerships with groups or organisations that already have an established identity in their local community. Such partnerships are likely to require negotiating a range of procedural and ideological differences, but the very process of doing this will embed collaborations in local community structures and enhance their sustainability. Most local communities offer a wide range of potential partners for public health programs, but faith communities are often under-utilised. Yet faith communities have the potential to enrich a wide range of public health programs, including public health palliative care collaborations. There is clear evidence, from multiple studies, that spiritual and religious belief is a social determinant of health and wellbeing, including wellbeing at the end of life. Even in the most secularized societies a small yet significant proportion of citizens, at least 10%, participates actively in faith communities, with that proportion often higher for citizens from immigrant backgrounds. In other societies participation rates are much higher. Networks that include faith communities can thus be a valuable resource for public health initiatives, engaging faith groups as sources of recruitment, sites for implementation and partners in expanding the reach of public health programs. Faith communities are usually rich sources for informal networks of care that can be expanded into the local neighbourhood. In multi-cultural cities, faith communities can provide access to groups not reached by many population-wide programs. Further, some of these groups will have developed programs of which regional health services are largely unaware. Admittedly not all faith communities are immediate candidates for public health collaborations, as we’ve seen demonstrated during the pandemic. Some faith communities have been innovative in providing emotional, social and material support to their local communities. Many have been effective at least in supporting their own members. But a few have actively resisted public health measures, or even fomented conspiracy theories concerning COVID and the vaccination program. In other words, there is a broad spectrum of response. This variability has no doubt led to caution on the part of potential public health partners, but the evidence for the importance of faith communities in creating and supporting health and well-being should not be overlooked. The potential of this resource deserves to be mobilised through partnerships with health and social services and other community groups – but obviously a clear framework setting out pathways for collaboration and strategies for accountability is essential. Collaboration between public health initiatives and faith communities relies upon a common interest in meaning in life, which probably comes into sharpest focus around end-of-life issues. Meaning will of course be interpreted and addressed somewhat differently across the partners, but negotiating these differences to develop a shared practice addressing health inequalities and barriers to social inclusion while promoting health at the end of life will be core aspects of any effective collaboration. A further important aspect of public health palliative care initiatives that involve faith communities will be ethical discourse – an examination of values at the core of shared interests in end-of-life care. While public health palliative care has at least commenced this conversation by naming compassion as an ethical imperative of end-of-life care, considerably more work needs to be done in exploring the moral and ethical foundations of care. Engaging with faith communities can be an important contribution to enriching this exploration. Bruce Rumbold is Director of the Public Health Palliative Care Unit at La Trobe University, and formerly a professor of pastoral studies associated with the Melbourne College of Divinity. ________________________________________________________________ PHPCI Tools and ResourcesA 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! COCO website launch The Compassionate Communities Center of Expertise (COCO) at the Vrije Universiteit Brussel in Belgium has launched its own website. It features information about the center, its aims, research, living labs and partners, as well as an extensive list of collected resources, including toolkits, guides, programs, and more. Visit the website here and stay up to date with COCO’s research, resources and events! Compassionate Communities Sustainability Guide The Compassionate Communities Sustainability Guide will build on Pallium Canada’s Compassionate Communities Startup Toolkit by supporting initiatives moving from the startup phase of development to the scale and spread phase. The Sustainability Guide provides best practices, case studies, and tools to implement these best practices when appropriate. The guide will support those leading Compassionate Communities (Compassionate Cities) initiatives to help ensure the long-term sustainability of their efforts. Download a copy at https://www.pallium.ca/sustainability-guide/ ________________________________________________________________ International eventsGlobal ACP Upstream - activating Communities, embracing conversations, preparing for crises.” 23rd/24th - 24th/25th August, 2021.
ACP International is organising a digital exchange that will spotlight global efforts to push ACP upstream by activating communities and having ACP conversations before crises arise. Website: Click here. International regions 17th World Congress of the European Association for Palliative Care (EAPC): “Exploring new dimensions.” October 6-8, 2021.
The EAPC Congress in Helsinki has been moved online and will be held on October 6-8, 2021! (Parallel session call: closed; Abstract call: closed.) Website: click here Oceanic Palliative Care Conference (21OPCC): 7th - 10th September 2021 Palliative Care Australia's Oceanic Palliative Care Conference is the pre-eminent event for all those passionate about palliative and end-of-life care. This year's conference (21OPCC) will convene leaders, health professionals, and experts in an accessible virtual format, to advance discussion and knowledge about palliative care in Australia and surrounding Oceanic Regions. Website: https://oceanicpallcare.com/ This provides a sample of events around the world. If you know of a global or international regional event to promote in the next newsletter, please email a.grindrod@latrobe.edu.au ________________________________________________________________ Do you have a story you’d like to share?We’d love to hear about your Public Health Palliative Care Project! Please send your experiences, stories or events to be included in forthcoming Newsletters to Andrea Grindrod at a.grindrod@latrobe.edu.au. ________________________________________________________________ Journal | Palliative Care and Social PracticePHPCI 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 CouncilOn 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 2021 General Secretary Dr Krystyna Kongats (Canada) | Term ending October 2021 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 ________________________________________________________________ Social mediaFor questions and inquiries please visit https://www.phpci.org/ Facebook https://www.facebook.com/PublicHealthPalliativeCare/ Twitter https://twitter.com/PHPalCare ________________________________________________________________ Editorial TeamDr Andrea Grindrod and Dr Daniel Lowrie. Thank you for the assistance of Dr John Rosenberg and Dr Kerrie Noonan with this edition.
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