Pleased to read this fair article from the Age in Melbourne giving (I think) a realistic picture of palliative care.
And…. no pictures of hands!
What did you think?
Thanks Miki Perkins @perkinsmiki
Pleased to read this fair article from the Age in Melbourne giving (I think) a realistic picture of palliative care.
And…. no pictures of hands!
What did you think?
Thanks Miki Perkins @perkinsmiki

Sarah Winch, The University of Queensland
On average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
Read more – A real death: what can you expect during a loved one’s final hours?
Another insightful article from Dr Ranjana Sriastava, a Melbourne medical oncologist and writer, encapsulates my recent experience as a palliative care doctor on the frontline between hope and dying in a cancer centre.
The anticipated miracles of cancers dissolving before our eyes are common enough for patients and doctors to push on with expensive, sometimes self-funded treatment (at great cost) in preference to the needed preparation by patient and family for dying. For a patient and family perspective, skip down to the comments after the article and read HugiHugo’s description of his wife’s last months while undergoing treatment.
A patient with widely disseminated and aggressive melanoma having immunotherapy grunted at me in frustration last month. “Listen,” he said, “they are all high-fiving over there in the oncology clinic. Why do you want to talk about end of life stuff? It’s really confusing.” Pretty appalled at the idea that we were giving the patient mixed messages, I was fortunate to be able to do a joint consultation with the patient’s medical oncologist to nut out our different perceptions. Unfortunately for the patient, his oncologist confirmed that the treatment was very unlikely to be a miracle and most patients in his situation would live less than a year. To say that the patient was shocked was an understatement. Had he not been referred to my team for symptom management, this conversation would have happened later – or never.
Evidence is emerging that outcomes of immunotherapy in patients with poor performance status are very unimpressive. Patients with poor performance status had been excluded from initial trials.
Where does the deficit in our communication of hope lie? Is it in the delivery by the doctor? The reception by the patient? A bit of both? How can we accurately respond to the portrayal of immunotherapy in the media and social media as a miracle cure, and allow for the possibility of benefit without downplaying the risks?
Sonia
So the last few days has been interesting for me. As GoGently Australia launched their latest campaign to advocate for assisted dying legislation, I’ve been removed from the public response in Australia, while attending the ICEL conference in Halifax. It’s been a great chance to hear about recent developments in Canada, and reflect on the data and some of the ‘lived experiences’ of practitioners, family members and patients, which has emerged through recent research.

[Image by André Koehne via Wikimedia Commons]
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.
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
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
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!
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
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