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.

emilio

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…

StC_general_heather_richardson

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

Upcoming #PallANZ Tweetchat on Wednesday 27 July 2016 – Tweet Chat Topics added below!

Join our upcoming #PallANZ Tweetchat on Wednesday 27 July 2016

Moderated by @JasonMills77

PallANZ 201607v2

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…

View original post 455 more words

#PALLANZ Tweetchat: Compassionate Communities

Join our upcoming #PallANZ Tweetchat on Wednesday 27 July 2016

Moderated by @JasonMills77

 

PallANZ 201607v2

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?

#ANZSPM16 – understanding demoralisation in palliative care

Screenshot 2016-07-13 22.17.14 copy

Demoralisation has been described as a form of psychological distress that is associated with hopelessness, helplessness, and a loss of meaning and purpose. It has been explored across a number of settings, but is thought to be particularly important in palliative care settings, where it may affect up to 20% of patients who face end-stage disease.

Such a pattern of distress goes to the core of our identity, and presents challenges to well-being and the often-cited idea of ‘living well until we die’. It also has important implications for decision-making and consent in relation to medical treatments.

Practitioners in palliative care understand the far-reaching impact of demoralisation, and Professor David Kissane, along with colleagues at Monash University have been advancing our understanding of this concept Continue reading

Musings on marvellous methadone

Been having some terrific N=1 successes recently using adjuvant methadone in resistant neuropathic cancer pain.

This Canadian group lead by Dr Courtemanche in Quebec followed 150 ish patients with cancer neuropathic pain who had low dose methadone added as an adjunct. They found that half the patient responded, where response was defined as a greater than 30% decrease in pain intensity. Median time to response was 7 days. Formidable!

In the same issue of  the Journal of Pain and Symptom Management, a Japanese team lead by Dr Sakamoto in Nagoya found that pain intensity was reduced in most of the 28 patients who were rotated to methadone from other opioids with  neuropathic pain caused by cancer. Sugoi!

Methadone… do you love it? Hate it? Fear it?

Sonia

The changing landscape of palliative care: #ANZSPM16 conference Sept 2016 Perth

Getting excited about heading to the Australian New Zealand Society for Palliative Medicine conference in September in Perth. With Melbourne’s frigid weather, the thought of a flight to sunny warm Perth in Spring has to be attractive. But more than that, the topic of how palliative care is changing in the 21st century is fascinating.

Continue reading

A death in the family

It was with great sadness that we learnt that Palliverse contributor Elizabeth Caplice had died.

Screen Shot 2016-07-14 at 22.12.09

Screen Shot 2016-07-14 at 22.12.28

Click here to read Ginger Gorman’s report.

Thank you Elizabeth for your contributions to Palliverse, and for your advocacy for Palliative Care.

Thank you for trying to make the world a better place.

We’d like to extend our deepest condolences to Alex and your loved ones.

Rest in peace Elizabeth.

James Jap on behalf of the Palliverse community.

Victorian Cancer Agency funding opportunities

vca_logo

The 2016 Victorian Cancer Agency funding round is currently open, with a number of schemes available that may be of interest to palliative care researchers:

  • Translational research projects
  • Clinical research fellowships
  • Mid-career research fellowships
  • Early career seed grants
  • Supportive care scholarships (at the Olivia Newton-John Cancer Wellness and Research Centre)

Most of the applications close in August.