Palace of Care / I think therefore I am? #gotjnrbak The final update.

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What would happen after the joyous reunion of Poppa and Junior? This was a question asked at our multidisciplinary meeting two and a half months ago. From the accumulated experience of our staff members we thought it could go either of two ways:

  1. Poppa might get a “boost” from being reunited with Junior and other family members, and might improve.
  2. Poppa had used what was left of his energy holding on to see Junior and would continue to deteriorate.

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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.

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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#PALLANZ tweet chat: Palliative Care Yarning

PallANZ 201603 altPalliverse acknowledges the traditional custodians of the lands on which we live, and we pay respect to Elders past and present. We also acknowledge the important contribution of Aboriginal and Torres Strait Islander people to Australian society.

The delivery of high-quality, culturally sensitive and respectful palliative care services to Indigenous communities is critically important. In the Australian context, a recent press release from NACCHO highlights some of the key issues, including the need to partner with Indigenous communities to develop and implement culturally appropriate services.

In the spirit of respectful, inclusive communication and ongoing learning, we invite you to join us for an online “Palliative Care Yarning” tweet-chat on 31st March 2016. This tweet-chat will be an opportunity to discuss some key issues in palliative care for Indigenous and First Nation peoples, including Aboriginal and Torres Strait Islander people in Australia.

When? Thursday, 31st March 2016

  • 4:00pm AWST Perth
  • 5:30pm ACST Darwin
  • 6:00pm AEST Brisbane
  • 6:30pm ACDT Adelaide
  • 7:00pm AEDT Canberra, Sydney, Melbourne, Hobart
  • 9:00pm Wellington, Auckland, Christchruch

What? Topics for discussion:

  • T1 What does high quality Indigenous palliative care mean to you?
  • T2 How can we improve equity in palliative care delivery to Indigenous communities across remote, regional and urban settings?
  • T3 How can existing services collaborate with Indigenous communities in palliative care? (eg training, advocacy, service delivery)
  • T4 How will the services of the future deliver high quality Indigenous palliative care?

As always, we ask that you include the topic tag (e.g. T1) in your response to each topic, and include the #PALLANZ hashtag in your response. As the #PALLANZ community is international, we respectfully encourage use of the term ‘Indigenous people’ where referring to Indigenous and First Nations people and communities from across the world during the tweet-chat. The @Palliverse moderator for this tweet-chat (@csinclair28) will be responsive to any specific requests or feedback from participants regarding appropriate and respectful language.

You don’t have to be an expert, a Twitter whiz, or even live in Australia or New Zealand to join – in fact, we strongly encourage those new to Twitter and from beyond our shores to join us and share your views!

For those new to Twitter check out our tutorial here.

Looking forward to talking soon.

Celebrity deaths – 29/2 #PALLANZ tweetchat

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I read the news today oh boy
About a lucky man who made the grade

When I was younger I was raised on a steady diet of rock and pop music. The Beatles, The Stones and Bowie were a regular sound track. An early and important experience of the significance of death for me was my father talking about the death of John Lennon.  He spoke about it with the same hollow awe that I have heard people use in talking about JFK or Princess Di. These events and other deaths like them were for many moments of cultural punctuation.  Events that changed people’s lives and their worlds.

Death and dying is all around us. Yet, we can be distanced from these realities due to the anxiety that death provokes and our society’s approach to dealing with it. Our relationship with the deaths of those closest to us can be limited by their being hidden away as a clinical activity within our hospitals and aged care facilities.  By contrast the deaths of public figures have never been more visible and scrutinised.  Social Media and the constant news cycle mean that we are always in the loop. Our uneasy fascination is privileged with contact and information.

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3 online events in the Palliverse this week!

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Here at Palliverse, we love online communities of practice. The monthly #PallANZ tweet chat, co-hosted by Palliverse and Palliative Care Australia, is not the only online educational opportunity that may be of interest this week. While we hope you join us for Thursday evening’s #PallANZ discussion of advance care planning, you might also like to check out the following exciting events: Continue reading

#PallANZ tweet chat: Advance Care Planning

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Advance care planning is an important process that is increasingly being taken up by our community. When done well, it can help those with serious illnesses take control of their future health care. However, many people in our community still do not know about advance care planning, which means those who are likely to benefit from the process are missing out.

How can we do better?  Continue reading

#PallANZ tweet chat

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Grief and loss is something we will all face at different times throughout our lives. Whether it is the death of our pets, our friends, our children, siblings or parents; the experience and expression of grief in response to these losses can be a very personal and individual thing. Grief can also arise in anticipation of loss. For those living with life-limiting illness, living with the loss of social role and professional identity can be especially challenging.

Thoughts about old, new and future losses can be particularly common during the festive season. For some of us, it may represent an anniversary of the death of a loved one, and bring with it painful memories of loss. Some might be facing their first Christmas ‘alone’, while others may be grappling with the possibility of celebrating their ‘last Christmas’.

While living with grief and loss is a personal experience, we don’t have to endure it on our own. As a community, there are many ways that we can support each other. Join us to talk openly about living with grief and loss.

TOPIC                    Living with grief and loss

DATE / TIME       10th December, 2015 @ 1900 AEDT

MODERATOR     @Elissa_Campbell

T1 Have you experienced grief and loss? How would you describe it? And what did you need from those around you?

T2 How do children live with grief and loss? How are they different from adults?

T3 What kinds of support are there for people living with grief and loss in your community?

T4 As a community and as individuals, how can we better support those living with grief and loss during the festive season?

Death and dying in the media

coming up

Q&A. Love it or loath it, or maybe a bit of both. But there is no denying that it strikes a chord with a sizable portion of the Australian population who would perhaps rather not be watching A Current AffairToday Tonight or their new lovechild: The Verdict. Continue reading