One sign of a good conference is when weeks after the conference (and beyond), it inspires you and changes your practice. The Australian Palliative Care Conference closed in Adelaide more than two weeks ago and I am still digesting the (at-times challenging) content from the plenary sessions, panels and breakout presentations.
If you were unable to attend the conference, or would like to revisit the many excellent presentations and themes, luckily Marie McInerney from Croakey was there to provide excellent reporting, with ten articles about the conference. You can even catch up on the conference tweets in her reports (including some from Team Palliverse).
Catch up at the Croakey site (and keep reading for the rest of their excellent Australian health coverage).
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.
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?
“Hippocratic is a feature-length film exploring the life story of this acclaimed Indian physician, Dr MR Rajagopal. From cowardly child to fearless visionary, this compelling tale sees its hero come full-circle to rediscover the first principals of medicine.
This exquisite first-person account tells the story of an extraordinary global health leader in Dr MR Rajagopal, or Dr Raj, who is described by the New York Times as ‘the father of palliative care in India’.
Dr Raj is a small man with a big dream: a pain-free India.
His mission is to bring ethical practice to modern medicine through whole person care. To achieve this he must provide universal access to essential, and heavily restricted, pain medicines.
Hence, this spiritual leader of ethical medicine now shares the story of his life’s work. Reflecting on effecting change and relieving unnecessary human suffering in a country of 1.25 billion people, almost one sixth of the world’s population.Continue reading →
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.
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.