The Centre for Palliative Care is hosting what will be a thought-provoking session on the intersection of death and digital media. As someone who is periodically startled by Facebook mentions of people who have died, I am looking forward to this.
“The focus of this presentation will be to outline some of the key issues surrounding death in the digital age. This will include a critical overview of how people mourn, commemorate and interact with the dead through digital media.
The presenters will briefly map the historical and shifting landscape of digital death by considering a range of social, commercial and institutional responses to technological innovations. Discussion will centre around multiple digital platforms through a number of case studies drawn from Australia, North America and Europe.
Through these case studies they will offer fresh insight and analysis into emerging practices through which digital technologies are used to mourn, commemorate and interact with the dead.
You won’t want to miss this 21st century overview of death and social media.”
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?
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.
Chaired by @Meera_Agar – the lead author of the seminal paper examining the role of antipsychotics in the management of delirium symptoms in the palliative care setting, which was published in JAMA Internal Medicine earlier this year – the session will feature presentations from Professor Agar, as well as:
Dr Simon Allan, palliative care physician, Director of Palliative Care at Arohanui Hospice in New Zealand and the current President of the Australasian Chapter of Palliative Medicine, the Royal Australasian College of Physicians,
Dr Chris Moran, geriatrician from Alfred Health and research fellow at Monash University, and
Dr Justin Dwyer, psychiatrist and Medical Director of the Psychosocial Cancer Care service at St Vincent’s Hospital, Melbourne.
After the presentations, a panel discussion involving the speakers will offer the audience plenty of opportunities to further explore this hot topic in palliative care.
Why do palliative care people bang on about advance care planning all the time?
Well, when you break it all down, advance care planning is all about respect. Respecting the values, goals and preferences of the person making the plan. And palliative care is really big on respecting people’s preferences and values, especially when it comes to their end-of-life care.
Unfortunately, when it comes to respecting people’s choices around their health care, the law has been lagging behind. Existing laws around advance care plans and medical decision making are often confusing for patients and families, as well as their treating clinicians. Fortunately, this is all about to change in Victoria. Continue reading →
Calling all nurses… Next month PCNA will celebrate more than a decade of progress towards its vision of excellence in palliative care nursing.
DID YOU play a part in establishing the foundation for this progress?
DO YOU want to contribute to future progress towards this vision?
ARE YOU just curious to check out the latest advances in palliative care nursing?
Whether you’re in Canberra, Cooma, Clayfield, Carlton, or Christchurch—this conference is your opportunity to meet and mingle with experts in your field, as well as catch up with old colleagues or make new friends and professional connections.
In this post we give an overview of the conference program and keynote speakers presenting at what promises to be an outstanding conference, not to be missed!
End of Life law in Australia covers the key aspects of the law for each Australian jurisdiction, and includes laws relating to advance directives, guardianship, palliative care, withholding and withdrawing life-sustaining treatment, organ donation and euthanasia.
Please contact ACHLR Coordinator Penny Neller for further information and/or contributions.
A thoughtful article regarding our modern attitudes to dying by Dr Craig Bowron, an internist (i.e. physician in internal medicine for us Down Under, or general medicine consultant)
Opting to try all forms of medical treatment and procedures to assuage this guilt is also emotional life insurance: When their loved one does die, family members can tell themselves, “We did everything we could for Mom.”
In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that “we sure put Dad through the wringer those last few months.”
I agree with Dr Bowron, that sometimes we may not consider the cost to the person (not the financial cost, other costs) of being able to say, “We did everything we could.”
What do you think? Does this apply where you are?
PS Thanks to Tegan, a social worker I work with, for pointing me to this article.
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?
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?