Palace of Care – In his arms

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Photo by Mayur Gala on Unsplash

It had been a great game of football, they had managed to successfully complete a number of moves that they had been practising for weeks. He was proud of the fact that the ball was always safe, in his arms.

The post-match party was a happy and raucous affair, a swirl of colours and noise, but everything seemed to stop, when she walked into the room.

Their eyes met across the crowded space, everyone else became invisible and they instantly fell in love. Soon she was, in his arms.

Fast-forward 23 years to an admission into our family room. Again a swirl of colours and noise as they settled into the room with their seven children, and their children’s children.

Early on in their relationship they had reflected on their own upbringing, having being raised by their grandparents, they made a pact that they would raise their own kids themselves.

And they did so over the next 22 years which were filled with joy.

She had become unwell over the past year, needing many trips to clinics and hospital for many treatments and even more disappointments. Always supported by their family  who stayed strong around them.

It had taken a lot of convincing to allow Hospice into their lives – he was scared of them – but the fears were soon allayed by the visiting staff.

Barely three weeks ago she had organised a family trip up North, just them and their four youngest children. “She knew that her time was short, and that was her preparing me.”

During the weekend, he had shared, “Thank you for providing this large room for us, it has allowed me to be the husband again, and the father to my kids, we can be ourselves again.”

There were many visitors over the weekend and into the new week.

On the very last night the couple were together, peacefully in bed, surrounded by the love from all their kids sleeping on the floor around them.

Coming back from the bathroom on the final morning, held up in his arms, “I think it’s my time to go.”

Gently back to bed, still in his arms.

Feeling safe, surrounded by the best things in the world, their kids and grand-kids.

She leaned back, in his arms, and then quietly left the room.

“She was looking after us all, right until the very end, giving us the strength to carry on walking tall.”

Conversations with patients in palliative care by Dr Matthew Grant

Dr Matthew Grant, a palliative care specialist, has published this article in The Conversation describing normal conversations in the course of his daily work.

I love the way he sensitively maneuvers through difficult conversations, allowing the patient to control the content of prognostic information given.

   “Not everyone will feel comfortable talking about their future treatment plans like Keith. It’s important I allow Sharon to decide whether or not she wants to talk about a future where she dies, just as I shouldn’t necessarily dissuade Christos from smoking if it gives him pleasure.”

Continue reading

webinar – palliative care in hospitals 17th October 2PM AEST

Interested in palliative care in hospitals? I certainly am. In my work as a palliative care consultant in the consultation service in an acute hospital, I see a LOT of unmet need, late referrals, and treatment being undertaken without good conversations about the patient’s goals and needs.

We at Palliverse are very keen to promote improvements at a systems level to improve access to palliative care in the acute setting.

On 17th October, Safer Care Victoria is holding a free webinar on palliative care in hospitals. Our host is Claudia Virdun, who has worked in palliative care within a clinical, project management or education position for over 18 years. Claudia has completed an Honours degree (Nursing), Masters degree in Advancing Professional Healthcare Practice and is currently a Phd Candidate with her research focusing on supporting system-level improvements for palliative care within the hospital setting.

Pre-reading for the webinar include Ms. Virdun’s review and meta-synthesis on what is important to patients and families in end of life care in hospitals.

The webinar takes place at 2PM on 17th October AEDT. For those outside of eastern Australia, here’s a time zone converter.

deprescribing at end of life

My pen poised over the drug chart, I hesitate.

Mr Jones* is a 58-year-old patient that my consultation palliative care team is seeing while he’s in hospital with complications of chemotherapy for advanced lung cancer. I am reviewing his discharge medications before he returns home to the care of the community palliative care team.

He is a very optimistic person, not keen to discuss the possibility of his cancer not getting better. An overweight hypertensive smoker, he’s on a full hand of antihypertensives, anti cholesterol medications, vitamin D supplements, a multi-vitamin, and antiplatelet therapy.

His prognosis is likely less than a year in my mind. Does he need all these medications?

A retrospective cohort study by Todd et al examined this question in groups of people with advanced lung cancer in the United States and the UK. The patients had died and been admitted to hospital then discharged at least once in their last 6 months of life.  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!

#ANZSPM Study Day for trainees & new fellows

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Beautiful spaces inside the Victorian Comprehensive Cancer Centre, the new home of the Peter MacCallum Cancer Centre in Melbourne, Australia

[The following article by Dr Sarah Dunlop, advanced trainee in palliative medicine, was first published in the Australian & New Zealand Society of Palliative Medicine (ANZSPM) Newsletter. The next ANZSPM study day will be held on September 6th in Sydney prior the the upcoming ANZSPM 2018 Conference. Follow #ANZSPM18 for updates from this biennial meeting – Chi] 

While there are many benefits of living in Western Australia (the weather, the beaches, and charming, debonair palliative medicine trainees), there are also downsides to living in one of the most isolated cities in the world… specifically the isolation! The decision to travel interstate to a course or conference usually hinges on three questions: can I get the time off, can I afford it, and is it going to improve my practice? So after charming my colleagues into giving a debonair trainee a day off and boarding the red-eye to Melbourne, I can confirm that the Study Day for Trainees and New Fellows met all my requirements.  Continue reading

#COSA17: #PalliativeCare reflections on the 44th Clinical Oncology Society of Australia Annual Scientific Meeting

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Despite being a Melburnian, I must admit that Sydney really is an irresistibly beautiful city when the sun comes out, especially by the water. The 44th Clinical Oncology Society of Australia (COSA) Annual Scientific Meeting was held in the newly renovated International Convention Centre in Sydney between 12-15th November 2017. With the sunlight streaming in through its many windows, reflecting off the waters of Darling Harbour, it really was the perfect place to be at the beginning of summer.

I attended the pre-conference workshop on cancer supportive care, which was organised by Judith Lacey, a palliative medicine specialist at Chris O’Brien LIfehouse. The whole-day workshop featured an interesting mixture of passionate speakers promoting a range of complementary treatments including medicinal cannabis, massage and probiotics; alongside others examining the evidence base for acupuncture, reviewing current clinical trials and prescribing pathways, and comparing different funding models for supportive care. It was a long but worthwhile day that set the mood for the rest of the conference.  Continue reading

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

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

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PC clinician open letter Final

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