Would you like to know a secret?

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EXTRA! EXTRA! Read all about it!

Never published or told before, James Jap reveals the secret origin of palliative care virtual community of practice – Palliverse!

Please check out James’s guest blog post on the EAPC blog site where he tells all and also introduces our “hot off the press” European Journal of Palliative Care article.

You heard it here first – Palliverse appears in traditional media!

Please let us know what you think.

 

#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.

Santa, death and the Easter Bunny – how to have that hard talk with your kid via @ConversationEDU

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Santa, death and the Easter Bunny – how to have that hard talk with your kid

Peter Ellerton, The University of Queensland

There’s no way around it: children sometimes have to hear it like it is. Despite our desire to keep their early years carefree, we may not be doing them a favour by keeping some hard truths from them. And for those things that are inescapable, like the death of a family member, glib answers won’t do.

We all learn at some stage that the world is not as we’d like it to be. That is possibly the single most important lesson in life. The big question is how to teach it to our kids, and when.

The “when” is sometimes out of our control, as circumstances can dictate. But there are parts of the “how” that can be more manageable.

Children are not empty vessels

Kids create deep and powerful narratives about the world regardless of what we do or don’t do. They do this for the same reasons we all do – to explain how the world works and to create meaning.

It is a mistake to think this narrative is absent in them until we decide to help create one. The reluctance we sometimes have to involve ourselves can be a result of this naive view.

We imagine they are somehow neutral or unsullied in their views, and that when we talk to them about hard issues we are forcing them to come to grips with an imperfect world.

We don’t always know what they don’t know. We assume they have developed a lot of cultural norms when they haven’t, and we assume they are unaware of things they have really thought a lot about.

One thing is sure: if we don’t help them make their narratives, they will do it themselves anyway, and perhaps not in ways that are healthy or optimal.

There are two important things we can do as parents to prepare our children for some deep and potentially disturbing conversations, and to help them build a more rational picture of the world.

The first is to help them make sense of the world through frequent and long conversations. Making meaning is the prime function of language, after all. This is where an established behaviour of talking is critical.

The only way to know how they currently see things is to talk with your child – a lot. Talk about issues big and small, and give them the chance to ask things that take time to well up in conversation.

The second is to treat them as rational beings capable of making sense of what is going on around them.

Children are far more rational than we give them credit for. And they are far more capable of deep insights than we usually imagine.

I work in the area of teaching children to think. The ability of very young children to do this well is a constant reminder of how our educational system underestimates them.

Two-way exchanges

The thing that makes a rational approach possible is treating conversations as two-way exchanges. We don’t just talk to children to instruct them, and we don’t just talk to understand them – we also talk so we can understand each other.

This is a critical point. By talking to understand each other we give children the opportunity to normalise their thinking, and to help understand the norms of mature social thinking. This in turn is important because it provides the ground for a rationality based in social competence, in which we reason to solve problems through discourse and social interaction.

As the Russian psychologist Vygotsky wrote in Mind and Society, children first learn a competence socially and then internalise it.

Every function in the child’s cultural development appears twice: first on the social level, and later, on the individual level.

To put it simply, if you have not modelled how to talk through difficult issues with a child, that child has not learned to internalise a mechanism for dealing with such issues.

This is a key component of teaching resilience – and is there anything we want for our children more than this?. For without the cognitive tools to manage change and uncertainty, they will be less resilient than they could be.

Whether the issue is the crashing reality of Santa’s state of existence, the death of a family member, or a dramatic change in lifestyle, there will be limited recourse for children to rationally understand the situation, and their role in it, if they have not been taught these skills.

So talk to your children about how they reckon Santa does it. Talk about mortality and what it means for us as humans. Talk about what life was like in the past and could be like in the future. Explore and unpack all the implications of these things with them.

Or just talk with them a lot about anything. Give them opportunities to come up with questions about these things themselves. If you give them the chance, they will not disappoint you. And by doing so, you will make them less disappointed.

The Conversation

Peter Ellerton, Lecturer in Critical Thinking, The University of Queensland

This article was originally published on The Conversation. Read the original article.

Australian Survey of Public Attitudes & Experiences Regarding End of Life Care

ACHR Survey

For those of us who might find a moment of idle time in proximity of a computer this long weekend, consider having your say in the Australian Centre for Health Research (ACHR) Survey of Public Attitudes Regarding End of Life Care.

According to ACHR, the aim of this quality improvement survey is to explore and understand the attitudes of the Australian population towards death, dying and end of life care.

There are 24 questions in total, and the survey is estimated to take around 15 minutes.
Your feedback will help shape how end of life care is supported and funded in Australia.

You can navigate to the ACHR survey page here to participate.

 

Do we in palliative care know what a “bad death” is?

Hello all!

Spending my weekend doing some auditing as my life is so exciting. Actually, it is really interesting, I am having a look at how people die with metastatic melanoma, and whether that’s been affected by novel agents.

I have volunteered to make an assessment of whether the deceased patients in our cohort had a “bad death”.

I am thinking of things like chemotherapy in last week/month, or death in ICU , or death in a resuscitation (although if the resuscitation and ICU admission were not futile, then that does not necessarily make them bad, does it….)

Are there proposed criteria for a “bad death” and a “good death”?

Thanks for helping me with my homework!

Sonia

A woman’s world?: Palliative care from a gendered perspective

Ed: As many of you will know #pledgeforparity was the theme for this year’s International Women’s Day on the 8th of March.  But to be able to make such a pledge meaningful first we we need to understand where inequality resides.  This important work from Tessa Morgan, Merryn Gott, and Lisa Williams begins to explore how questions of gender equity relate to palliative care.  

Do we understand culture's effect on care roles?

Do we understand culture’s effect on care roles?

Dying at home is widely celebrated as the pinnacle of a ‘good death’. It is therefore unsurprising that governments internationally are framing current moves to increase the numbers of people dying at home as a ‘win-win’ situation. People get what they want at the end of their lives and the health system saves money. Result! However, is it really that straightforward? Increasingly, our research group has been thinking about the unpaid workforce we rely on to enact home dying. Who are they? How does this caring work impact upon them physically, psychologically, socially and financially? Why are they so invisible?

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2016 APLI Annual Forum

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Are you interested in global palliative care? Australasian Palliative Link International (APLI) are holding their Annual Forum in Adelaide on Wednesday, 22 June 2016, prior to the Multinational Association for Supportive Care in Cancer meeting.

APLI are responsible for the award-winning Project Hamrahi, which links Australian palliative care clinicians with their Indian counterparts who are establishing local palliative care services. APLI says the annual forum aims “to update the healthcare community about Project Hamrahi activities, provide a networking opportunity for like-minded clinicians, allow the recruitment and training of new Project Hamrahi mentors and finally to publicise the work of APLI.” It looks like an inspiring schedule of speakers.

For more details and registration, visit the APLI website.

When it comes to death the statistics are clear: We will all die.

This reality greets readers of a recent report published by the Australian Centre for Health Research entitled: Conversations: Creating Choice in End of Life Care.

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Human Rooms in Palliative Care: Creating multi-sensory healing spaces

A human room is a space where a vulnerable person or persons can reconnect with self. This process usually occurs after the participant engages with taking control of the environment by selecting sensory elements that appeal to them…”

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