August #PALLANZ tweetchat – Funerals

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Robert Larkins, in his book Funeral Rights explains how “…in a little over 80 years, it has become the norm in Australia for a person to die in an institution and for strangers to collect the body and spirit it away to some mysterious and inaccessible mortuary.” He ascribes this transition to a combination of complex legislation, inadequate community awareness and in some cases, exploitation by those in the ‘death-care’ industry.

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Bill’s Story: “Bill United” as a Compassionate Community

Ahead of tonight’s #PallANZ Tweet Chat – we wanted to share here, the way Milford Care (In Ireland) so poignantly paint this picture of a Compassionate Community, through Bill’s Story – featuring his community “Bill United”

What would your story look like?

For more videos similar to this, visit: www.compassionatecommunities.ie

 

Compassionate Communities: Another Perspective

In the lead up to this week’s #PallANZ Tweet Chat with @PCACEO
and @Palliverse, we are once again very fortunate to feature the
contribution of an international guest – with Dr. Emilio Herrera (@emiliohm)
President of NewHealth Foundation, sharing with us insights from his experience
in developing compassionate communities across Spain and Latin America.

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Dr Emilio Herrera

Dr. Herrera is President of NewHealth Foundation (NHF), a non-profit Spanish institution which seeks to promote new models of health and social care integration; in particular, in the areas of advanced chronic illness and palliative care. He is an expert in palliative care, with long-standing experience in planning and implementing palliative care and integrated health and social care programmes in Spain and Latin America. In recognition of this work, he has received various national and international awards, including the 2015 international “Palliative Care Policy Development Award” from the European Journal of Palliative Care.
* Full Bio follows below

 

Currently in Australia to present a Keynote Address at the 2016 Palliative Care Victoria Conference (if you haven’t already – you should register now!), Dr Herrera very kindly gave his time to speak with us about our #PallANZ discussion this week on Compassionate Communities.


What is a compassionate community – and how is it relevant to hospice and palliative care?

It is a group of people who are able to mobilize to help others in their community who are facing a life-limiting illness, in order to promote well-being and alleviate their suffering.

This requires a cultural evolution and a return to moral principles and values:

It requires the understanding that the care of the people around us is everyone’s responsibility – beyond mere provision of public or private services. It requires continuing work in social awareness to promote general knowledge of how to act in these situations, and preferably, public and corporate policies that could facilitate all of this.

Initially the Hospice movement was closely linked to the community:

The Hospice itself represented a place where people received the necessary care in their last days of life, but also a place of participation for the patient´s families, friends and/or neighbours. Over the years, palliative care has often been medicalised and has lost much of its social character. However, as advocated by Dr. Libby Snallow, the interaction between Hospice and volunteer communities has been as long as its history.

In the years to come, the prevalence of chronic disease and disabilities will increase.  Almost 70% of the world population die after a period of chronic illness. Likewise, the number of family caregivers is declining. With these solid facts, neither the end of life or death can be understood as a failure of medicine—nor can high quality palliative care be offered without the active participation of the community.

What challenges must we overcome to promote compassionate communities?

  1. We have to be more humble. Our two principal barriers are inside ourselves: fear and ego. We must recognize that, as health care professionals, our training does not prepare us to help a community find its own solutions and shape its own future.

  2. We have to change our approach as a health system. In general, it is not easy to focus on the needs of individual people.  As Dr. Julian Abel stated in his “Circles of care”, the person at the centre should be supported by their more intimate community, and around both the patient and his/her inner community, the health and social care services should work like an integrated care system to offer the best of care.

  3. Society must return to recover the dignity of care:  the privilege of caring as opposed to the burden of caring.

  4. We have to design and implement methodologies to interact with the community that will require us to devote considerable time and resources. Implementation of the Compassionate Cities Charter developed by Professor Allan Kellehear and Dr. Julian Abel are a good starting point.

  5. The first challenge is to understand the paradigm of integrating health care, social care and direct participation of the community.

  6. We need to invest in order to achieve efficiency.   We need specific budgets to generate the necessary resources to stimulate the community. An important part of those budgets should come from the community itself and the private sector, not only the government.

  7. We need motivation from our best professionals. They are often tired after so much effort and many years of hard work without getting the expected results.

  8. We need first class social marketing.

  9. We need to align the active participation of different social stakeholders.

  10. We need to understand that empowering a community goes way beyond promoting volunteer organisations.  It involves a change of attitude in the society. This also needs to involve working from and with schools. 

In what ways can we build meaningful and effective partnerships between palliative care professionals and the broader community?

In general, we need to create a common social mission. This is much more than a recipe.

This involves working hard to create a different and involved society; to imagine a sustainable social model and restore the value of caring; to implement an enduring story, to create together a legacy that can grow, and to believe in our shared meaning as human beings.

Some tools and specific actions that can help to achieve these aims include:

  • Identifying and promoting good leadership among our experts and the public.
  • Making local maps of aligned initiatives and identifying stakeholders.
  • Networking.
  • Establishing commitments from and with organizations and institutions involved.
  • Recruiting collaborating centres.
  • Raising local financing.
  • Establishing agreements.
  • Designing local projects.
  • Raising awareness campaigns and offering training activities.
  • Designing and using agreed tools.
  • Evaluating the Project by sharing results and outcomes.

As part of Emilio’s work, the City of Seville is set to be recognised as one of the first ‘Compassionate Cities’ in the world, by Public Health Palliative Care International. You can read more about this achievement here. You might also be interested in reading ‘Compassion is the Key’ – where Emilio highlights ‘Compassion’ as the value that should be promoted to transform the healthcare model.

@Palliverse and @PCACEO are extremely grateful for the generosity of Dr Emilio Herrera in sharing his valuable insights with us. You can see Emilio present the Keynote Address at the Palliative Care Victoria Conference on Friday 29th July; Bayview Eden Hotel, Melbourne Australia. Register now!

* Dr Herrera’s background is in medicine, holding a Bachelor of Medicine and Bachelor of Surgery and he is also a specialist in Family and Community Medicine. He continued specialising in palliative care and completed an internship in palliative care at the MD Anderson Cancer Centre Houston (USA), and at Edmonton (Canada). He also holds Master’s degrees in both Health Services Organization and Management, and Senior Management.

At present, the NHF is heavily involved in the development of palliative care programmes in Colombia. In Spain, it has also set up the Observatory of Integrated Care Models (OMIS) in order to identify and make visible, current experiences of health and social care coordination and integration, and to translate knowledge and create synergies. Finally, the NHF is developing the social movement Compassionate Communities and Cities through the setting up of the project “Todos Contigo” in several cities of Spain and Latin America.

Compassionate Communities: An International Perspective…

In the lead up to this week’s #PallANZ Tweet Chat with @PCACEO
and @Palliverse, we are very fortunate to feature the contribution
of Dr Heather Richardson, Joint Chief Executive,
St Christopher’s Hospice London
, sharing with us from her
experience, insights into building compassionate communities—
an international perspective from which we all can learn and benefit…

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Dr Heather Richardson

Prior to her current role as Joint Chief Executive at St Christopher’s,
Dr Richardson held posts of National Clinical Lead for Help the Hospices,
and Strategy Advisor at St Joseph’s Hospice. She has a wealth of experience as a general, mental health, and palliative care nurse; and holds a Master’s degree in Health Management as well as a PhD.

In 2015, Dr Richardson was appointed an Honorary Professor of the International Observatory on End of Life Care at Lancaster University, and her work is featured in Compassionate Communities: Case Studies from Britain and Europe, edited by Klaus Wegleitner, Katharina Heimerl, and Allan Kellehear.

 

Dr Richardson is in Australia presenting a Keynote Address at the 2016 Palliative Care Victoria Conference (if you haven’t already – you should register now!), and she very kindly gave time from her busy schedule to speak with us about our #PallANZ discussion this week on Compassionate Communities:

 

So, what is a compassionate community – and how is it relevant to hospice and palliative care?

This is a great question and one that a number of us have been pondering in the UK. There is a growing belief amongst hospices and others that compassionate communities could help improve the experience of dying and loss in the UK. This change is a key aspiration on the part of hospices and other palliative care services.

Compassionate communities have a similar aim and it is this mutual ambition that makes compassionate communities relevant to hospice and palliative care. Most importantly hospices are increasingly realizing that even with the best will in the world they will never achieve the reach, their vision that death and bereavement is seen as part of life, and the improvements in care required without drawing on the energies, relationships and connections in communities.

 

What challenges then, must we overcome to promote compassionate communities?

These challenges are significant but there is real appetite on the part of many in the UK to overcome them. Research being undertaken by Sallnow in East London, currently unreported, confirms that individuals and communities who see themselves as the first members of a local compassionate community, highly value the contribution being made by their local hospice to support their efforts. This suggests that hospices do have a role to play, but there is no doubt that they will have to change the way they work if they are to be effective in promoting and supporting compassionate communities.

In particular they will need to review their approach to risk management, which can serve to constrain the potential contribution of volunteers. They will also need to consider carefully how individuals working as part of a compassionate community are described and positioned. To whom do they belong and have accountability? Are they similar or different to traditional hospice volunteers and is that term transferable? Thinking differently about training will also be necessary. Moving from a place where training focused on “doing things the hospice way” to helping people recognise and harness their own capacity and that of the community to which they belong is a significant shift.

 

In what ways can we build meaningful and effective partnerships between palliative care professionals and the broader community?

These partnerships will be vital if significant improvement in the experience of people who are dying or bereaved is to be achieved.

Hospices are in a privileged position in this respect. Many were conceived by the communities that they serve and enjoy prolonged and vital partnerships around fundraising and volunteers. If they can make the shift in mind-set from a professionally driven service to a community enabled network of mutual support around death, dying and loss they will be able to build on these relationships to the benefit of local people.

Hospices and other palliative care services are also well integrated into health and social care systems. With an open mind and a generous spirit, they could become part of a rich web of partnerships that draw together their staff and volunteers, statutory providers of health and social care, commissioners, policy makers, community development organisations and most importantly community leaders, members and groups. Their work together will be key to transforming care which for many is currently unsatisfactory and of an unacceptably poor quality.


 

SO, dear readers, given that the UK is an international leader in building
compassionate communities, what can WE all LEARN from the UK experience?

Join us on Wednesday 27th July to share your thoughts during the #PallANZ Tweet Chat on Compassionate Communities.

@Palliverse and @PCACEO are extremely grateful for the generosity of Dr Heather Richardson in sharing her invaluable insights with us. You can see Heather present the Keynote Address at the Palliative Care Victoria Conference on Thursday 28th July; Bayview Eden Hotel, Melbourne Australia. Register now!

 

#PALLANZ Tweetchat: Compassionate Communities

Join our upcoming #PallANZ Tweetchat on Wednesday 27 July 2016

Moderated by @JasonMills77

 

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Imagine if communities really cared about their members’ health and social well-being. And imagine if that care extended to the dying, death, and loss, experienced by everyone in those communities. Imagine if the idea of ‘death’ went beyond physical death and included the deaths of identity and belonging… Such frameworks do partly exist in the World Health Organization’s ‘Healthy Cities’ programs, but end-of-life care issues are often neglected.


Kellehear, A. (2005). Compassionate Cities: Public health and end-of-life care. Routledge: London.

 

Over a decade has passed since Australian Sociologist Allan Kellehear implored us to imagine this vision for compassionate communities’ care for those among us living with dying.

Why the emphasis on social contexts of death and dying?
In many ways, the communal experience of death and dying has become medicalised through professionalization of the (more social) hospice movement, into contemporary palliative care. But we cannot forget that death is not solely a medical event—dying is a fundamentally social experience, with profound impacts on ones’ social concepts of self and broader social networks. Social determinants of health remain equally important even as one approaches death; this is encapsulated beautifully in the notion of healthy dying.

In this article (available here), Kellehear outlines the widespread uptake of compassionate communities approaches in England – in both policy and practice initiatives. Others discuss the broader development and uptake of similar approaches internationally, through a public health framework of palliative care professionals’ community engagement.

The key message of compassionate communities is that, whilst professional care is essential, it is not central to the dying person. The primacy of social networks and informal care, as well as limitations to service provision, must be recognized; professional care must therefore complement, not supplant, this social care. Unfortunately, there has been research to suggest that professional care has, at times, seemingly hindered rather than helped. Health promoting palliative care, community development and death literacy are therefore increasingly emphasized.

What does a ‘compassionate community’ look like?
In a compassionate community, as described by Kellehear, death  and care of the dying is everyone’s concern and responsibility—families, neighbours, friends, workplaces, schools, businesses, and places of worship are a source of genuine support, care, information, networking, and greater learning about end-of-life care.

You may be part of part of more communities (groups of people) than you realize, so let’s begin to think about our own communities – and the ways in which support and compassionate care are (or could be) expressed through these social networks.

JOIN US
This month, @palliverse and @PCACEO invite you—as a health care consumer or health care professional—to join us for this #PallANZ Tweet Chat to discuss ‘Compassionate Communities’ on Wednesday 27th July 2016.

This online tweet chat will be an opportunity to share your experiences, ask questions and talk about the key issues. Let’s together discuss this important topic and exchange ideas to build communities that are more compassionate and able to care for those of us living with dying.

For those new to Twitter check out our tutorial here.

  • When? July 27th (Wednesday)
    • 5pm AWST (Perth)
    • 6:30pm ACST (Adelaide, Darwin)
    • 7pm AEST (Sydney, Melbourne, Canberra, Brisbane, Hobart)
    • 9pm NZST (Auckland, Christchurch, Wellington)
  • What?   ‘Compassionate Communities’
    • T1 Let’s start with communities (groups of people), which communities are you a part of?
    • T2 Now on to ‘compassionate communities’ – In what ways do your communities support & care for those living with dying?
    • T3 What helps & what hinders your communities to have the capacity and compassion to support & care for those living with dying?
    • T4 Palliative care is everyone’s business – what can we do to build more compassionate communities?

Annie’s Story

Palliverse is excited to welcome a  Guest Contributor – Molly Williams – who shares with us “Annie’s Story” ahead of our #PALLANZ tweetchat on paedriatic palliative care (#pedpc) this Thursday 30th June at 7pm AEST.

Molly Williams

Pictured: Dr Molly Williams

Molly is a paediatric oncologist now in the last 6 months of training in paediatric palliative care. She has a particular interest in supportive care in cancer – the idea of creating a culture of concurrent curative and palliative cancer management & giving kids the best chance of cure while not sacrificing their quality of life fills her with enthusiasm & glee! She has a personal fascination with positive psychology and creative anachronisms, and makes her own beer, cheese and tonic water!

Hope you can join us at #PALLANZ  on Thursday to chat about many more stories like Annie’s. If you would like to share your story with our community, email us at palliverse@gmail.com

@AnnaLCollins


Annie’s Story, As Told By Her Doctor

By Mollie Williams

This is a story about working in paediatric palliative care. It is all about Annie, which is not her real name actually but it is a perfectly true story apart from that. Continue reading

Upcoming #PEDPC #PallANZ Tweetchat

Palliative Care Needs of Children & Adolescents

This month, we are excited to explore how palliative care can help to support young people in our community living with serious illness! Our upcoming #PALLANZ tweetchat to be held at 7pm (AEST) on Thursday 30th June will discuss topics related to the palliative care needs of children and adolescents and their families. We will also be featuring some guest blogs from new Palliverse Contributors working with young people in Paediatric Palliative Care (#pedpc).

During our #PALLANZ tweetchat, we hope to bring together those interested to talk about how a kid’s #pedpc service can help young people with serious illness to live well; when a young person might meet the #pedpc team; and where they might like to receive care. We’ll also imagine we have a magic wand able to do anything we want to improve the available supports and share these ideas and other helpful resources!

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#NPCW16 #PallANZ Tweetchat: Living Well with Chronic Illness

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Join next week’s #PallANZ tweetchat on the topic of “Living Well with Chronic Illness”, the theme of Australia’s National Palliative Care Week (#NPCW16). Anyone with experience of living with life-limiting chronic illness, having a loved one with chronic illness, or working with people with chronic illness, is encouraged to participate. You don’t have to be Australian, and Twitter newbies are welcome!

Australian Institute of Health and Welfare statistics show that most people who who access palliative care have cancer. However, palliative care can be of benefit to many people living with non-malignant diseases and chronic illness as well. These include dementia, heart disease, lung disease or kidney disease, to name a few. Many people could benefit from what palliative care can offer, such as management of pain and other symptoms, advance care planning for the end of life, and support for carers.

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Glen’s Story: “I am the principal carer for my wife, Carole.”

Hi Palliverse folk.

In line with our #PALLANZ Tweetchat, this month Palliverse takes a special focus on Carers. As part of this, we are pleased to welcome a new contributor to Palliverse, Glen Davis. Glen lives in regional Victoria. He is husband, advocate, and principal carer for his wife, Carole, now in the final stage of dementia. He also is father to 3 children, and has 5 grandkids.

I was fortunate to connect with Glen when he contacted us to contribute his thoughts to tomorrow’s Tweetchat. For me, Glen’s story powerfully resonates many feelings and realities experienced by carers in our community. He shares with us several resources he’s  discovered that have been personally influential. Although Glen believes the palliative care community understands carers better than most medical disciplines, his story highlights the many gaps that exist in the way our carers are supported.

Hope you can learn from Glen’s story and join us tomorrow at #PALLANZ for a candid discussion of how we provide “Care for the Carers”.

Anna (@AnnaLCollins


BECOMING A CARER

Pictured: Glen with his wife Carole, 2007

Pictured: Glen with his wife Carole, 2007

Who do you care for and how did you come to be a carer?

I am the principal carer for my wife, Carole. I retired from my work earlier than planned because Carole was needing more help at home. Her symptoms then were anxiety, discontent and some trouble finding her words. Spending more time with her, I soon learned there were some tasks she could no longer do. She had been a crack typist and that had gone. Her sister and brother-in-law (a nurse and a doctor) noticed symptoms they likened to Alzheimer’s disease, so we started investigating intensively. It took over a year before, in 2011, we reached a diagnosis of fronto temporal dementia. That is a degenerative disease in which cognition, speech and eventually mobility decline progressively as a result of shrinking of the brain. It is a fatal disease with no cure.

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#PALLANZ Tweetchat: Caring for the Carers

Join our upcoming #PallANZ Tweetchat on the 28 April 2016

Moderated by @AnnaLCollins

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‘Carers’ are those of us in our community providing informal, unpaid care to someone living with serious illness, disability, mental illness or frailty. Carers play an indispensable role in providing palliative care in our community.

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