ABC radio Perth says that it’s time to talk about death and your end of life plan

http://www.abc.net.au/radio/perth/programs/focus/an-organised-death/9563772

This FOCUS discussion examines what it means to respect the final wishes of the dying.

And how can any of us do that, when most of us are reluctant to even bring it up?

There’s the nitty-gritty stuff like a will, powers of attorney and advanced-health-directives.

And then there are the things around the edges; where do you want to spend your final hours, what will happen to your pets and what do you want played at your funeral?

Taking part in the discussion is nurse practitioner, Shannon Tassell and Dr Margaret Sealey, a palliative care counsellor from Murdoch University.

Duration: 36min 35sec

Broadcast: 

Death and digital media seminar Melbourne 26th April 17:00

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.”

For more information email centre.palliativecare@svha.org.au

http://www.centreforpallcare.org/events/32/hot-topic-death-and-digital-media

Cheers, Sonia

 

What does a successful (US) palliative care program look like?

A little different from that found in Australia or New Zealand. 28097_PEC_Palliative_Care_Poster

Here are some ideas which might have resonance in our region.

I love the idea of automatic triggers to referral, which takes away the emotional content for the referrer of whether to refer or not. But our electronic medical record systems lag a long way behind that seen in the US, which is problematic.

I am not sure what I think about the suggested re-brand to “supportive care”. Less threatening for some patients and referrers, for sure. Does it mean we are joining the ranks of the death deniers, though?
Excellent reminder about the importance of meticulous communication with referrers. However I suggest that an item missing is laser focus on communication with patients. As patients sit at the centre of our care, I often write the letter to the patient in non medical language, and copy in the referrer and general practitioner. The letters may be light on medical detail for some referrers, but the patients often find them useful to remind them of what we talked about, and to show family, friends and other care givers.

I liked the data down the bottom about readmission rates, that would be a powerful lever for our managers to promote palliative care consultation services. Patients seen by palliative care had dramatically lower readmission rates compared with those not seen.

I would love to see an infographic about our palliative care services data, if you have seen one please let me know!28097_PEC_Palliative_Care_Poster

Sonia

New Zealand wins (again)

I have to confess I am a fan of the New Zealand health system from across the ditch. Sensible spending. strong palliative care health service connections… am I wrong Bro?

This article has not succeeded in reversing my bias in favour of New Zealand.

Palliative data nerds will no doubt recall this  fascinating study in Scotland by Professor Clark et al.  Published in Palliative Medicine, and quickly attaining the journal’s highest-ever Altmetrics score (1) , Clark showed that among 10,743 inpatients in 25 Scottish teaching and general hospitals on 31 March 2010,  3,098 (28.8%) patients died during the one-year follow-up period. The findings were replicated in 2013 with similar results.

The study by the fabulous  Professor  Merryn Gott et al showed that on the same date, the corresponding figure in New Zealand (including obstetrics) was about half at 14.5%. Patients at higher risk of dying were the elderly of over 80 years of age, Maori, those with cancer, those from socially disadvantaged backgrounds, and those admitted under medical specialties rather than surgical.

New Zealand seems to provide better end of life care outside the hospital setting, with stronger end-of-life care in the aged care setting. This has certainly been a focus for service development in Australia as well.

How would we rate in Australia I wonder?

I would love to hear from international colleagues

Ref (1)  https://www.gla.ac.uk/research/az/endoflifestudies/projects/imminence/

Sonia

#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.”

pexels-photo-247786

“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

 

File 20170915 21553 2itf3w
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

 

 

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