Research opportunities in palliative care

Read on if you are interested in some research opportunities in palliative care, based at HammondCare in Sydney.

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An open letter to Victorians on #PalliativeCare #VAD #euthanasia

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PC clinician open letter Final

#WorldAnaesthesiaDay – The role of peri-op ACP: “Mum may die during this operation”

Palliverse is lucky to have a guest submission from rural General Practitioner (GP) Jonathan Ramachenderan, who reflects here on his role as a GP Anaesthetist, with an interest in aged care and palliative care. (He is currently undertaking further training in palliative medicine.) By luck, his post about peri-operative advance care planning (ACP) coincides with World Anaesthesia Day (16th October) and this year’s theme in Australia and New Zealand is “Anaesthesia and Ageing.”

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“There is a real chance that your mum will not survive this operation” I said frankly to Sue.*

Her expression changed immediately to one of disbelief and she replied “What do you mean?!”

“The surgeon said to me that all mum needed was to have her hip fixed and then she would be fine to return back home to the village…I really thought she’d be home pretty soon, I wasn’t expecting you to say this.”

Patiently and well-practiced I said “I am sorry to tell you this but….”

Just then our surgeon burst into our little meeting room (the medication room on the ward). He was smiling, diffusing any thought that I had that I was delaying the operation by talking at length with Ingrid’s daughter.

Sue turned to him and said, “You didn’t tell me that mum may die during or after this operation.”

Her question caught him off guard and his expression changed rapidly to one of seriousness mixed with concern. “Jonathan is right, there is a chance your mum may not leave hospital even after we repair her hip fracture. Given her age, medical issues and frail state, her chances of returning home are significantly reduced”.

This changed the tone of the meeting as it brought into view the real implication of Ingrid undergoing this operation.

The conversation that followed was an important discussion about Ingrid’s stated end of life wishes and how this related to the specific complications of having her hip fracture repaired. Ingrid, aged 85 years old, had importantly completed an Advance Health Directive 3 years earlier with her GP, when she had begun to notice subtle changes in her memory and wanted to make sure her end of life wishes were known. Since then her mobility, general health and memory had declined, which led her to move into a “low level care” village environment, which had revived her zest and enthusiasm for life with the many interesting people and activities. She had suffered a mild heart attack a few years earlier and her breathlessness had recently restricted her movement to only around the house. But a sudden change of direction in the shower had caused her to slip and fall heavily, breaking her right hip.  Standing in that cool medication room on the busy ward, Sue understood the true impact of her mother’s accident and the implications of the proposed operative management.

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World Hospice and Palliative Care Day 2017 – a global call for Universal Health Coverage and Palliative Care

Author: Kate Jackson, WHPCA

On 14 October, over 200 organisations around the world will raise their voices to celebrate World Hospice and Palliative Care Day and Voices for Hospices 2017.

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. Voices for Hospices is a wave of concerts taking place on World Hospice and Palliative Care Day every two years.

The theme of this year’s World Hospice and Palliative Care Day is: Universal Health Coverage and Palliative Care: Don’t leave those suffering behind!

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In the news

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

 

When life is coming to a close: three common myths about dying

 

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Dying at home isn’t necessarily a good death.
from http://www.shutterstock.com.au

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?


Myth 1: positive thinking can delay death

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immunotherapy and the miracle cure

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

 

 

Latest developments on assisted dying: ICEL conference, Halifax 2017

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.

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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