Stop the horror(ible misrepresentation)

This short film released this week tells an awful story of a man and his family that is apparently based on true events. It is clear from the film that the man did NOT receive the best palliative care currently available.

The film concludes with a statement that people like the man depicted die in awful ways “[d]espite the best available palliative care”. This statement is at odds with the film, which depicts him NOT receiving “the best available palliative care”.

Why did the poor man NOT receive “the best available palliative care”? The film does not tell us why. The statement at the conclusion of the film does not tell us why. We are left to wonder why this poor man and his family did NOT receive “the best available palliative care” for their suffering.

This film is a powerful depiction of the suffering experienced by patients and their families when they do NOT receive “the best available palliative care”. This film about suffering and suboptimal palliative care should lead us to demand better access to “the best available palliative care” from our politicians.

You can watch the R-rated (suitable for persons aged 18 years and over) film here.

17APCC

Just getting ready to head to Adelaide for the Australian palliative care conference 2017….

Getting excited!

The smart phone app is really good and I am not just saying that cos Elissa and I are nearly at the top of its Leaderboard.

Go on, check it out!

Who is coming…..?

http://pca2017.org.au/getinvolved/

See you there?

Sonia

Research priorities in Australian adult palliative care

We at Palliverse support open dialogue between researchers, clinicians, policy-makers and the broader community as to how things are going and what are the priority areas for future work. Please see below a research opportunity which is relevant to researchers and clinicians working in Australian adult palliative care settings. Continue reading

Palliverse researcher hub

It’s well known that research can be a demanding and sometimes lonely road, particularly for those new to the discipline. Early career researchers often have to build networks, lead projects, write applications to funders and ethics committees, liaise with project stakeholders, analyse data and present findings, all while building networks and managing a precarious career pathway with little security. Support and skill-sharing is critical during this process. The Palliverse researcher hub was formed in 2016, following a discussion between some of our crew at a conference. The idea was a regular, informal get-together for post-grad and early career palliative care researchers, to discuss aspects of our projects, seek advice and share experiences. We meet bi-monthly for around an hour, and keep a relatively open agenda, to aim for the kind of reflective discussion you don’t always get at departmental seminars or CPD sessions. We’ve started small, and now are ready to branch out a little. If you are a palliative care researcher working in Australia or New Zealand, and think you’d like to join our group, please get in touch with us by emailing craig.sinclair@uwa.edu.au. Happy researching!

Life in a hospice – reflections on caring for the dying

We have had an email from the Palliverse – Ann Richardson has kindly made her book “Life in a hospice” available as an e book. Life in a Hospice: reflections on caring for the dying is based on very honest interviews with a variety of hospice staff in England, talking anonymously about the joys and challenges of their work and its impact on their lives.

See below for her email. Let us know if you have read it! Thanks Ann for letting us know

Sonia Continue reading

Pallimed article on heart failure palliative care trial

Thanks to Dr Drew Rosielle for this thoughtful analysis of an important trial, comparing usual care to usual care plus palliative care in ambulatory heart failure patients.

http://www.pallimed.org/2017/07/palliative-care-chf-pal-hf-trial.html

Headline – palliative care improved quality of life. So this article is adding to the literature supporting this idea, which mostly occurs in the malignant domain.

Check out Pallimed if you have time, it’s got great stuff!

Enjoy!

Sonia

 

You can’t always get what you want…

An excellent post from a person who knows about the old battle metaphor for cancer. Cancer is not a failure of will or morals.
Thank you CM!

The Fairytale and the Abyss

Some of you may have seen 60 Minutes on Sunday evening. It featured the story of ‘Patient 71″, a woman named Julie Randall who was diagnosed aged 50 with metastatic melanoma. She found a place on a US clinical trial and is now in excellent health. There is much that is great about her story. She was very much her own advocate and aggressively sought out treatment options. But the rhetoric around the story was less than great.

The 60 Minutes Story ran a very strong line that Julie refused to die and leave her teenage children. As if it is really a choice. I now know far too many mothers and fathers who have died leaving children much younger than Julie’s. Not one of them wanted to leave their children. I suppose I shouldn’t expect much more of 60 Minutes than the trite and cliched. And yet it annoyed…

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online resources: palliative care for Aboriginal and Torres Strait Islander peoples

CareSearch has created online resources that will help build a path of cultural capability and understanding for supporting care with Aboriginal and Torres Strait Islander people.

Ensuring that Aboriginal and Torres Strait Islander patients feel culturally safe and receive culturally responsive care is a key responsibility of every health care provider.

Guided by an expert advisory group comprised of Aboriginal and Torres Strait Islander people representing various organisations within the health sector across Australia, CareSearch has created online resources that will help build a path of cultural capability and understanding for supporting care with Aboriginal and Torres Strait Islander people.

The Aboriginal and Torres Strait Islander Care pages include information for providing culturally appropriate care for all health care providers, the Aboriginal health workforce, and the wider health workforce; share information with Aboriginal and Torres Strait Islander patients, their families and communities; and provide information on finding relevant research and evidence. There is a strong emphasis on the person’s care journey and how members of the health care workforce join their journey along the way.

You can access the Aboriginal and Torres Strait Islander Care pages at http://www.caresearch.com.au.

Contact caresearch on caresearch@flinders.edu.au

Acknowledgements:  Aboriginal and Torres Strait Islander Reference Group, PEPA & PCC4U (The Collaborative), Leigh Harris, Igneous Studios

‘Elder Abuse: A National Legal Response’ – Report from Australian Law Reform Commission

ElderRefugee

Today is World Elder Abuse Awareness Day. The United Nations, in their resolution 66/127, established June 15th as a global day, which aims to raise awareness about elder abuse as a global issue, ‘everybody’s business’ and one that will become of increasing importance as our global population ages.

Elder abuse is defined as ‘a single, or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust which causes harm or distress to an older person’ (WHO). It can include physical, psychological, emotional, financial or sexual abuse, and neglect.

While palliative and end-of-life care is not solely an issue for older people, it is timely to remember that many people accessing palliative care are also ageing, and often experiencing issues associated with elderhood, including societal attitudes towards older people. Many of these issues can influence people’s access to support, social engagement, health services and the enjoyment of personal freedoms and decision-making rights, making this an area of direct relevance for palliative care.

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ANZSPM position on medicinal cannabis

ANZSPM criticises failure to consult on medicinal cannabis

The Australian and New Zealand Society of Palliative Medicine (ANZSPM) is calling for improved consultation with end-of-life care experts after yesterday’s Senate decision on medicinal cannabis.

ANZSPM President, Dr Carol Douglas FAChPM, expressed concern that the decision will have ramifications for both patient and practitioner protections:

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