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a.grindrod@latrobe.edu.auSubscriber Name $$PLAIN_TEXT_PREVIEW$$
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PHPCI Newsletter │ Issue 2 │ October 2020
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FROM THE PRESIDENTIt’s hard to imagine how much our world has changed since the beginning of 2020. For many PHPCI members, their families and communities, it has been a time of great hardship and loss. As an Australian, I’m grateful that my home country has not borne the brunt of the pandemic, but acknowledge that for many others, this is not the case. The impact of the pandemic on dying, death, loss and grief continues to unfold. We have heard reports of deaths that were anything but ‘good’; we’ve watched footage of mass burials of unclaimed bodies of the vulnerable in our communities; we’ve encountered grief without the scaffolding of ritual farewells. The task for our Association is to continue to advocate for and support strategies across the many levels that public health palliative care operates. In families, neighbourhoods, communities, towns and cities, there are current and future opportunities to mobilise. In some places, civic organisations such as municipalities are implementing public health approaches to dying, death, grief and loss; approaches that move beyond the important population health strategies around isolation, distancing and hygiene practices, to social, civic and health systems. The Compassionate Cities Charter is one example of this. The opportunities that present themselves have been and remain ever changing. In the context of these extraordinary circumstances, and despite them, the work of PHPCI continues. As an Association and as PHPC practitioners, we need to be agile, responsive and flexible; in addition to the COVID-19 Statement we released in March, we hosted a Twitter chat, and established a COVID-19 resource webpage on our website. There are a range of upcoming webinars for members and others. There are publishing opportunities in the PHPCI/End-of-Life Care Research Group’s Palliative Care and Social Practice journal. Efforts are being made in several places around the world towards the establishment and consolidation of PHPCI Regional Chapters. These Chapters are designed to mobilise public health palliative care strategies more locally. More information will be provided to members as it becomes available. In this edition, a special word of thanks goes to Peter Ellis who leaves the Council due to ill health – our Council Vice President, Dr Libby Sallnow, gives a moving tribute to Peter and his legacy in PHPCI and beyond. It’s also hard to believe our 6th PHPC International Conference was only in October last year. We welcomed many new members to the Association then and continue to encourage all members to contribute to the life of the Association. We were delighted to have the conference special edition of Progress in Palliative Care released in April. Despite the uncertainty of the times, Prof. Luc Deliens and the conference planning team are working towards the 7th PHPC International Conference in November 2021. To finish, I’d like to repeat an excerpt of our COVID-19 statement: “The challenges of the public health crisis of COVID-19 are complex and no less so in the experiences of caregiving, dying and bereavement at a time of profound social disruption. We hold that a public health response at this time is essential to enable optimal health and wellbeing of dying people and their carers, and those who are bereaved. We strongly advocate the view that healthcare services – and palliative care services in particular – require partnerships with communities in order to respond to the changing needs of patients and carers.” On behalf of the PHPCI Council, I hope you are staying well, safe, and
connected. Dr John Rosenberg RN PhD President, Public Health
Palliative Care International
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PHPCI Council - Report on the PHPCI elections The first major re-election of the new PHPCI Council took place in September 2019. In total, 49 PHPCI members voted in the 2019 election. The election results were officially announced at the 6th PHPCI conference this past October in the Blue Mountains, Australia. PHPCI was pleased to announce Dr. John Rosenberg (Australia) as the next President of PHPCI. John is a Senior Lecturer in the School of Nursing, Midwiferyand Paramedicine at the University of the Sunshine Coast in Queensland, Australia. He also holds an adjunct position as Associate Professor at Western Sydney University, where he is a member of the Caring at End of Life research team and an Investigator on the Death Literacy Index project. His PhD was awarded in 2007, the first ever doctoral study of health promoting palliative care. John has made a substantial contribution to the scholarship of Public Health Palliative Care with numerous related publications in books and journals, and many conference presentations. In addition, we were pleased to welcome Dr. Libby Sallnow (UK) back to council in a new position as the next Vice President of PHPCI. Libby is a palliative medicine doctor with a PhD in community engagement in end of life care. Her research interests include a public health approach to end of life care, the role volunteers can play in end of life care, benefits of collaboration for communities and hospices, developing new models of engagement and compassionate communities. She has experience of working with innovative programmes exploring these issues both in the UK and internationally and has published books and articles on this field. We also send our congratulations to Luke Colons (UK) as the next Treasurer, Kerrie Noonan (Australia) re-elected as Webmaster, and Andrea Grindrod (Australia), Dr. Zipporah Ali (Kenya), Dr. Eman Hassan (Canada) as Ordinary Members. We also welcome Prof. Luc Deliens (Belgium) as the new Conference Representative. Continuing council members include: Prof. Allan Kellehear (UK) as the Palliative Care and Social Medicine Journal Representative, Bonnie Tompkins (Canada) as Membership Secretary, and Krystyna Kongats (Canada) as General Secretary. All council members profiles can be found on the PHPCI
Council page. We wish to extend a huge vote of thanks to Peter Ellis, treasurer of PHPCI and council member for five years, for the tremendous contribution he made during his time on the council and for his championing of the needs of children and young people at the end of life. Originally training as a nurse, Peter has been a relentless advocate for children’s end of life care throughout his career. He was the CEO at Richard House children’s hospice in London for 17 years and was a founder-member of Children’s Hospices across London (CHAL). He pioneered the Young Adults Service at Richard House which served as an exemplar of best practice for children transitioning into adult services and support with life limiting conditions. He is a big thinker and constantly challenges others to think differently. It was this curiosity that led Peter to travel to Kerala to understand the public health and palliative care movement there and was one of the first people to apply these principles to children’s care. Through his strength and courage as a leader and an innovator, children’s end of life care began to adopt principles from a public health perspective and public health approaches to end of life care were challenged to remain relevant for and inclusive of children and young adults. Peter is stepping down from his role on council. He suffered a major stroke in 2018 and has written eloquently about his experiences recovering from such a major health event on his blog HERE. He remains a reflective colleague, a tireless thinker, a respected friend and he continues to advocate for the of role friends, families and communities in end of life care.
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NEWS AND UPDATES FROM AROUND THE WORLD
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A MESSAGE FROM PHPCI COUNCIL REGARDING COVID-19 Public health has always been and will continue to be about connections between people. Amidst the changes we are all making daily to our lives and social connections, there is a need for compassion in our communities like never before. The coronavirus has given us physical distancing and containment on a global scale, but it has also reminded us that community is central to all that we do and who we are as human beings. In order to change the course of this pandemic, we need to stay apart and follow the public health advice. Despite this people and communities are reaching out across this physical separation to find ways to stay connected. At the moment we are remembering what it is like to rely on each other. The challenges of the public health crisis of COVID-19 are complex and disruptive. For many of us already working in the public health palliative care space, we know how central the community is in the care and support of people who are dying and their families and all the usual caring, dying, and grieving continues on around us. Yet this pandemic has brought this into light our dependence on each other and the fragility of our healthcare system. In the most profound ways, it has sharpened our understanding of our interdependence. This interdependence runs not only within communities and between people but across healthcare services and professionals. What this interdependence is showing us is that we as individuals and communities rely on health services when we are sick, as much as health services rely on us. The message we are hearing from our leaders is that we don’t have enough beds, nurses and doctors to care for all our dying at this time. The Public Health Palliative Care message is that healthcare services – palliative care services in particular – must work WITH communities in responding to the changing needs of dying people and carers. This means working with neighbourhood, workplace, faith groups and social clubs to assist them in ensuring that physical isolation does not translate into social isolation and that grief and bereavement are addressed as a civic response rather than a toll on already strained bereavement services. We hold that a public health response at this time is essential to enable optimal health and wellbeing of dying people and their carers, and those who are bereaved. As noted by our colleagues in Italy, “Western health care systems have been built around the concept of patient-centered care, but an epidemic requires a change of perspective toward a concept of community-centered care.” We strongly advocate that community-centered care is the approach that provides a critical way forward. This is not only about providing community-based health care services but hospitals, homes care services, communities and individuals working together to address these urgent needs. Like you we have many questions. In such a rapidly changing context, it seems there are more questions than answers. PHPCI Council is committed to advocating for public health strategies for the issues surrounding dying, caregiving and loss during and after this pandemic and urges all citizens to make inquires about the whereabouts and actions being designed by their local Compassionate Community or Compassionate City. A list of Compassionate Cities and their contacts can be reviewed on the PHPCI website. Cites or communities who do not have compassionate public health strategies in their own city can contact one of the Compassionate Cities in their country to receive advice about how they can start one in their local region/area/city. For the whereabouts of their closest compassionate community, interested readers should contact their local hospice or palliative care service to inquire about these or ask about how they can be assisted/supported to establish a compassionate community in their area. In the days and weeks ahead, PHPCI Council will promote a range of forums for the sharing of ideas, strategies and feedback about how public health palliative care approaches are and can be utilised throughout the world. This will include webinars, twitter chats, videoconferencing and a repurposing of the PHPCI website homepage to accommodate the open access to this information. Remember, end-of-life care is EVERYBODY’S business. Social connection, mutual support and civic action are the cornerstones of public health palliative care and the coronavirus pandemic makes these an imperative. Now more than ever we must catalyse this work in our families, neighbourhoods, hospitals and communities and reach out across physical divides, using technology and other innovative means to connect and build communities in these times of death, loss and suffering. If you don’t have a compassionate community or city in YOUR area – the time is NOW to establish one. Contact your local hospice or palliative care service and start asking how. Click on the button for more information and resources.
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#PHPC2019: Conference Report 6th Public Health Palliative Care International Conference was held in Leura 13-16 of October 2019. It’s hard to believe it was just over a year ago that many of us met old and new friends in the Blue Mountains, Australia for the 6th PHPCI conference. There had been so much activity since the conference in Canada in 2017, we were hoping that the 6th conference would help to showcase these activities and provide inspiration for future directions. Over 350 researchers, practitioners, innovators, policymakers and creative people working to improve end of life care nationally and internationally. We had outstanding speakers from Australia, England, Ireland, Scotland, Canada, New Zealand, Taiwan, Hong Kong, Brazil, Japan, USA, China and India. We were thrilled that so many people from near and far are contributing to the ongoing building of this community of practice. Some of the highlights included “artification” of the conference thanks to
Artist directors Dr Peta Murray and Niki Read. The ‘From the Brink’ Fringe
Festival, was part of the work of the local compassionate communities project
and embedded in the conference were many films, walks and creative workshops
and Fringe events. We are pleased to see the plenary papers published HERE and the abstracts HERE.
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Palliative Care and Social Practice: Call for Papers 2020 PHPCI has its own peer-reviewed academic journal published by SAGE UK. Our journal is Palliative Care and Social Practice and it is an international,
peer-reviewed, open access journal that publishes articles on all aspects of
palliative care co-edited by Professors Lukas Radbruch and Allan Kellehear. 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. Above all
the journal wishes to raise the research and policy profile of a social model
of palliative care. We encourage reports from work with under-represented groups, community development, and studies of civic engagement in end of life issues. Furthermore, we encourage scholarly articles that challenge current thinking about dying, its current care models and practices, and current understandings of grief and bereavement. We want to showcase the next generation of palliative care innovation research and practice - in clinics and in the wider society. The journal welcomes a broad range of methodological designs – from trials to ethnography to analysis of existing sources. All articles are listed on PubMed, PMC and Scopus, and are freely available to read and download. We are currently preparing for TWO special issues for 2020: ● One special issue will be devoted to LGBTQ topics in end of life care. Please contact Dr Denise Marshall at McMaster University for suggestions and submissions (email: marshald@mcmaster.ca). ● The other special issue will be devoted to Topics in Paediatric Palliative Care. Please contact Georgia Patey at SAGE (email: georgia.patey@sagepub.co.uk) for the paediatric issue. Any general inquiries about the journal or about prospective submissions for our journal can be directed in the first instance to The Co-Editor Professor Allan Kellehear at a.kellehear@bradford.ac.uk
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Council Member Feature: Is compassion slowly drifting out of our culture and traditions? Reflections from Kenya Zipporah Ali, MD, MPH, MPC Executive Director, Kenya Hospices and Palliative Care Association (KEHPCA) 'My 10-year-old son is sick, he has cancer. I lost my job, my husband kicked me and my two sons out of the house soon after my son started his cancer treatment. My other son is only 4 years old. I have nowhere to go, no one to turn to. No food and shelter for my children...please help us', Jane, desperate young mother Do such things happen? Yes, they do. In modern times, this is not a new scenario or an isolated case. There are many Janes out there. desperately looking for someone that can show compassion and empathy to them. Someone to reach out to them Jane (not her real name) is a young lady with two children. Her eldest child is sick and needs care; yet, she has not been to the hospital for the last seven months. Her son had surgery and chemotherapy about a year ago. She was not able to bring him to the clinic for follow up due to the many unfortunate events that were happening in her life. She could not afford to pay her bills as well as her son's medical bills. She lost her job due to absence at work when she was taking care of her ill child. Her husband wanted nothing to do with her or their two sons. Jane lives in a capital city where the normal traditions and cultures are being compromised, forgotten or ignored. In the big city, it is 'every man for himself and God for all of us'. We are all too busy with our own lives and the problems that come with living in a fast track city. We have no time to listen to the pain of those around us. We are slowly becoming immune to humanity. This is not us, this not what we were years back. When I was growing up in a small rural town, I knew that an individual does not and cannot exist alone and that certain moral norms and virtues, especially kindness and concern for others is part of our culture. A child 'belonged' to the village. Their welfare was a community concern. This still remains a valuable African tradition to me and I am sure, to many others. Where have we gone wrong? Trying to adapt a fast life (Western culture) does not mean we lose our valuable traditions of 'I am because you are'. I am because you are-Ubuntu (humanity, virtue, goodness, kindness), is an African concept whose meaning embraces the idea that humans cannot exist in isolation. We depend on connection, community, and caring, we cannot be without each other. Ubuntu is a philosophy that requires a conscious shift in how we think about ourselves and others, especially at times when those around us are living in sickness, disease and poverty. The COVID-19 pandemic situation calls for an 'Ubuntu' approach, serious health-related illness, end of life care..in all these situations. It is time for our communities, especially in the cities, to reflect and remember what it is like to belong, to know that help is around the corner and that one is not left alone in their suffering. We must act with compassion as individuals but also as communities. No man is an island. Compassion and empathy are important values in life that need to be brought back into our modern societies. We should cultivate practices of empathy. Ubuntu!
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2. NEW RESEARCH, REPORTS RESOURCES New articles: PHPC 2019: Special Issue in Progress in Palliative Care A special issue on the PHPC2019 conference has been published in Progress in Palliative Care. This special issue features many of the keynote presentations at PHPC2019: Compassionate Communities-- Reclaiming Ageing, Dying and Grieving. These keynote features are highlighted and linked below under ‘New Research’. In addition, this special issue includes a supplement containing the abstracts of plenary presentations, workshops, symposia, concurrent presentations and poster presentations. Rosenberg, J. P., Horsfall, D., Sallnow, L., & Gott, M. (2020). Power, privilege and provocation: Public Health Palliative Care today. Progress in Palliative Care,
28(2), 77-77. Noonan, K., Sallnow, L., & Richardson, H. (2020). Ten years of public health palliative care conferences: a critical reflection for the next decade. Progress in Palliative Care, 28(2), 78-82. Kumar, S. (2020). Community participation in palliative care: Reflections from the ground. Progress in Palliative Care, 28(2), 83-88. Stajduhar, K. I. (2020). Provocations on privilege in palliative care: Are we meeting our core mandate?. Progress in Palliative Care, 28(2), 89-93. Grindrod, A. (2020). Choice depends on options: A public health framework incorporating the social determinants of dying to create options at end of life. Progress in Palliative Care, 28(2), 94-100. Moeke-Maxwell, T., Mason, K., Williams, L., & Gott, M. (2020). Digital story-telling research methods: Supporting the reclamation and
retention of indigenous end-of-life care customs in Aotearoa New Zealand. Progress in Palliative Care, 28(2), 101-106. Aoun, S. M. (2020). Bereavement support: From the poor cousin of palliative care to a core asset of compassionate communities. Progress in Palliative Care,
28(2), 107-114. Kellehear, A. (2020). Compassionate Cities: global significance and meaning for palliative care. Progress in Palliative Care, 28(2), 115-119. Murray, P. (2020). An elegy for every little thing. Progress in Palliative Care, 28(2), 120-122. (2020). Special Issue Supplement: Conference Abstracts from the 6th Public
Health Palliative Care International Conference, Progress in Palliative Care, 28(2), 123-188.
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Toolkits: Compassionate Community Toolkit by British Columbia Centre for Palliative Care - Canada The Compassionate Communities’ movement in British Columbia (BC) was ignited in May 2015 with a visit from Dr. Allen Kellehear, the leader of the international movement. Following Dr. Kellehear’s visit, the BC Centre for Palliative Care (BCCPC), a provincial not-for-profit organization, engaged other leading organizations in the development of a plan that aims to activate and support the growth of compassionate communities across BC. The plan comprised of five key strategies: 1) Educate the public and community groups about the community’s role in supporting people affected by serious illnesses, dying and grief experiences; 2) Inspire community groups to participate in the movement; 3) Empower interested community groups with the knowledge, skills, and resources they need to become compassionate community champions; 4) Recognize and spread successful experiences; 5) Support networking of compassionate community champions to facilitate exchange of experiences and resources. To support the implementation of this plan, BCCPC provided seed funding, training, coaching and access to implementation and evaluation tools for community organizations interested in starting compassionate community initiatives. Evaluation of 68 compassionate community initiatives implemented in rural, remote and urban communities across BC provides evidence of positive impact at all levels:1) Volunteers: improved knowledge, skills and confidence 2) Community organizations: enhanced competency, established new partnerships, attracted new sources of funding 3) Public: better supported, socially engaged, and better informed of the resources available in their community. The BC Compassionate Communities Toolkit builds on the successes and experiences of compassionate communities in BC. The Toolkit includes the following resources: What is a Compassionate Community?- A promotional material designed to raise public awareness of what a compassionate community looks like. Compassionate Community Ideal: Promotional material designed to inform, inspire and assist community groups in identifying the five features of an ideal compassionate community. Compassionate Community Index: A survey tool designed to help a community group assess the level of readiness and commitment in their community to adopt the key features of the ideal compassionate community. The survey results help identify strengths and areas that need further work. Compassionate Community Index Handbook: A guide designed to help the facilitator of a community group to administer the Compassionate Community Index. Compassionate Community Action Guide: The guide suggests a variety of activities and project ideas to consider for building upon the community’s level of readiness and commitment in each of the five features of an ideal Compassionate Community. Case Studies from British Columbia
The toolkit was created by BC Centre for Palliative Care in partnership with Kalein Centre for Dialogue, Integrated Hospice Care and Education, and with the
guidance and content contribution from an advisory committee of compassionate
communities’ champion organizations, a public health physician, and an
palliative care physician. For more information about the toolkit, contact Dr. Eman Hassan, the executive director of BC Centre for Palliative Care, at ehassan@bc-cpc.ca
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Resources: Pallium Canada’s COVID-19 Response Resources To contribute toward health care professional preparedness during this pandemic, Pallium has made a series of palliative care online modules and webinars available to health care professionals across the country. In collaboration with the Canadian Medical Association, Pallium is providing free access to essential education on palliative care for all health care professionals in response to this unprecedented COVID-19 pandemic. In collaboration with Boehringer Ingelheim (Canada) Ltd., Pallium is hosting a series of webinars focused on topics that are relevant to our health care teams who are actively leading the response to COVID-19.
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Organised by: End-of-Life Care Research Group and EAPC
Reference Group on Public Health and Palliative Care Location: Bruges, Belgium | Dates: 2 – 5 November 2021 Abstract deadline: to be announced! Event link: https://phpci.info/7th-international-conference Seminar: Public Health Research in Palliative Care: Towards Solutions for Global Challenges Organised by: AIIHPC, EAPC RN, EAPC Reference Group on Public Health and Palliative Care Location: Belfast, Northern Ireland (moved online!) | Dates: 17 & 18 November 2020
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This webinar was held earlier this year, you can watch HERE
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On behalf of the PHPCI council, good wishes for the coming months, we are all in this together. 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 Colons (UK). Term ending 2023 Membership Secretary - Bonnie Tompkins (Canada). Term ending October 2021 General Secretary - Krystyna Kongats (Canada). Term ending October 2021 Webmaster - Kerrie Noonan (Australia). Term ending October 2023 Journal Rep - Prof Allan Kellehear (UK). Term ending October 2023 Ordinary Member - 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 Conference representative - Prof Luc Deliens (Belgium). Term ending
October 2023
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