Palliverse’s Greatest Hits from Oct 2014 – #getjakbak revisited – Part 2

Photo by Jonathan Kemper on Unsplash

At 3pm on Friday afternoon, 18 hours before our departure time, I received bad news. The promised community raised funds had not come through. Was the trip to be cancelled because of a deficit of $3320?

I finished the phone call and took a quick walk around our inpatient unit, and talked to some of the staff about the funding problem. One of the nurses asked me what I was going to do. I really had no idea but for some unknown reason I replied to her, “Magic.”

I had 120 minutes to come up with $3320, at a rate of $27.67/min. What to do? What could I do? What was on the line was a dying man’s wish to return home to see his family. This was his final chance to try to get home, he had been trying to get home ever since he had arrived here months ago.

Who could help? Maybe a virtually community of practice? I went online and decided to launch my first ever crowd-funding campaign, asking people to pledge money towards the trip deficit. The original post can be read here. I emailed a link to it to everyone that I knew.

17 minutes later the first pledge came in, then another, then another. Drip by drip the pledges came in. $20, $40, $100, $200. Palliative Care people were keen to help including healthcare staff, administration staff. People from around New Zealand and Australia came to our aid. One of the other patients on the ward caught wind of what was happening and pledged $200 to help his fellow patient get home.

With only five minutes to spare we reached our goal, the trip was going to happen! I went to see our patient and his wife and told them that I would be seeing them early tomorrow morning for our trip back to the Islands.

Island-Man: Far From Home

I think therefore I am? – Can social media help palliative care?

Photo by Matt Collamer on Unsplash

Hi folks,

You might have already come across Hospice Nurse Julie on TikTok.

In her short videos she explains things that we commonly see in end of life care.

Julie McFadden’s engaging videos have gone viral. Awesome!

How else could social media help us in terms of palliative care promotion?

How can we use these platforms for good?

How can we extend our reach further?

Who else can we help to extend their reach?

How can we help our friends and colleagues in other less developed places provide palliative care better?

Many of us around the world, myself included, did not feel at all prepared by health care school curricula which continue to lack palliative care education.

Personally, in my spare time, I am working on a freely downloadable “Dummies Guide to Palliative Care” book aimed at newbie health care practitioners. Contents to include: Did you know there are five main symptoms when people are dying? Here’s how to identify them, and treat them…

Please let me know if you are keen to contribute, as doing it by myself might take longer than if I had some helpers.

James

Accessible video about NFR (not for resuscitation) orders for patients and families

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Dr Barbara Hayes and Prof Joe Ibrahim have combined forces to make this elegant simple Youtube resource to explain not for resuscitation orders, cardiopulmonary resuscitation, and advance care planning for patients and families.

It works through the differing perspectives of medical teams and patients and their families to explain why sometimes CPR can do more harm than good.

Happy #advancecareplanning week!

Sonia

#PalliCOVID #PallANZ tweetchat 23/3

#PalliCOVID #PallANZ

Please join us and other palliative care clinicians from across Australia and New Zealand on Monday 23/03/2020 for a tweetchat on the COVID-19 / novel Coronavirus pandemic.

When?

Who?

  • Palliative care clinicians, researchers, managers, policymakers, patients and carers
  • Interested / involved in helping our communities live, die and grieve well in the face of the life-threatening COVID-19 / novel Coronavirus pandemic
  • Living or working in Australia and New Zealand

How?

What?

  • Topic 1: Please share a story about your #COVID19 #Coronavirus experience so far – at work, at home and/or online
  • Topic 2: Have you come across any useful #COVID19 #Coronavirus resources that others might find helpful?
  • Topic 3: How can we look after ourselves and each other during the #COVID19 #Coronavirus pandemic?

We hope you can join us for a great discussion about this global public health challenge!

 

Love is not enough: National Advance Care Planning Week 2020

ACPWeek2020 video

This video, produced by Advance Care Planning Australia, encourages fit and healthy Australians to more seriously consider why advance care planning is important in their lives.

Australian couples were put to the test by asking them how well they know their loved one. While they were mostly able to correctly answer questions about preferred foods and holiday destinations, when it came to questions about end-of-life choices, things take an interesting turn…

Please watch the video and feel free to share it with your network #LoveIsNotEnough
National Advance Care Planning Week runs from 23 – 27 March 2020, and currently has 140 events scheduled, in locations across Australia. For more information, or to host an event, visit the ACP Week website

 

 

Palliative care and #ausvotes19

It’s election time again! Honestly, we have not had a new Prime Minister for ages in Australia. We sadly can’t have Jacinda Ardern, but there it is.
Dr Benjamin Thomas (@andiyarus)  has been tweeting up a storm putting pressure on the powers-that-be and the powers-that-wannabe in advocating for #palliativecare patients in the upcoming election. He visited the @Palliverse to answer a few questions for us. Continue reading

#ANZSPM18 Conference – New Frontiers

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The Australian and New Zealand Society of Palliative Medicine 2018 Conference #ANZSPM18 is off the a great start, with many excellent plenaries & proffered papers presented on day 1 – following an excellent Trainee Day & pre-Conference workshop on thought leadership.

Day 2 promises to be even more awesome, starting off with keynote speaker Tom Le Blanc sharing his insights on collaboration & integration between palliative care & haematology. The rest of the day will feature a variety of plenaries & concurrent sessions on the new frontiers of palliative medicine – the theme of the conference. I’m also looking forward to the conference dinner tonight!

You can find the sides for my presentation on Palliative Care in Heart & Lung Transplantation here: HLTX PC ANZSPM18 Chi Li

Enjoy!

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

 

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