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

 

 

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.

2017 ANZSPM Aotearoa Annual Conference and AGM

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We at Palliverse love a conference, especially one that “brings together doctors working in palliative care” in Aotearoa/New Zealand.

The 2017 ANZSPM Aotearoa Annual Conference and AGM will be held in Christchurch this year. It all starts off with the Trainee Day on 11/08/17 which is open to all Palliative Medicine trainees, General Practitioners with a special interest in Palliative Care and Medical officers working in Palliative Care.

The 2017 Annual Education Update Programme is packed with many topics of interest, and will be a good opportunity to catch up with what is going on all over the country, as well as catching up with new and old friends. This year Dr Wendy Pattemore will be introducing a new session called, “Wild Successes and Fabulous Failures,” which will provide an opportunity to share how Palliative Care is done in your own ‘patch’.

To register you can either use this 2017 Annual Education Days and Trainee Day Registration Form or register via the website. Attendees must be ANZSPM members. Our friends from Australia are always very welcome!

For my reflections from the 2015 ANZSPM Aotearoa conference, click here.

Funeral services in Australia: Moves toward greater clarity at a time of great vulnerability

When you think about funerals, what is the first thing that comes to mind?

It may be a favourite scene from ‘Six Feet Under’ – the cult TV drama series depicting a family-run funeral home in Los Angeles. Or, it might be an iconic image of those prominent funeral companies that can seem to dominate the industry. If, however, you are currently in the throes of organising a funeral – chances are you may not really know what to think, or where to go in terms of navigating this very difficult passage of time.

As a social worker or nurse working in palliative care, you may be unsure of what resources are available to help support families’ decision making during a time of mourning. That’s where a novel funeral home comparison site can be of great assistance – you may find what you are looking for Gathered Here.

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Palace of Care – Living every moment

Living every moment when you’re dying

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In New Zealand last week we celebrated Hospice Awareness Weak and to tell you the truth I’m not sure how impactful the week actually was. Continue reading

Delirium update at #ANZSPM17 Update

delirium @#ANZSPM17

We think delirium is a pretty big deal here at Palliverse, having devoted quite a few blog posts over the years to discussing this important issue in palliative care.

Well, delirium will be the focus of the first session at the upcoming 4th Australian and New Zealand Society of Palliative Medicine (ANZSPM) Medical & Surgical Update for Palliative Medicine (#ANZSPM17), which will be held between June 23-24th at the Royal Children’s Hospital, Melbourne, Australia.

Chaired by @Meera_Agar – the lead author of the seminal paper examining the role of antipsychotics in the management of delirium symptoms in the palliative care setting, which was published in JAMA Internal Medicine earlier this year – the session will feature presentations from Professor Agar, as well as:

  • Dr Simon Allan, palliative care physician, Director of Palliative Care at Arohanui Hospice in New Zealand and the current President of the Australasian Chapter of Palliative Medicine, the Royal Australasian College of Physicians,
  • Dr Chris Moran, geriatrician from Alfred Health and research fellow at Monash University, and
  • Dr Justin Dwyer, psychiatrist and Medical Director of the Psychosocial Cancer Care service at St Vincent’s Hospital, Melbourne.

After the presentations, a panel discussion involving the speakers will offer the audience plenty of opportunities to further explore this hot topic in palliative care.

Of course, delirium is just one of the many great topics that will be examined in detail during the fourth iteration of this biennial meeting. To find out more about the #ANZSPM17 Update, and to take advantage of the early bird registration rate until May 24th, go to: https://willorganise.eventsair.com/QuickEventWebsitePortal/2017-anzspm-update/update

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Advance care directives, palliative care, and euthanasia

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[Image by Nick Youngson]

Why do palliative care people bang on about advance care planning all the time?

Well, when you break it all down, advance care planning is all about respect. Respecting the values, goals and preferences of the person making the plan. And palliative care is really big on respecting people’s preferences and values, especially when it comes to their end-of-life care.

Unfortunately, when it comes to respecting people’s choices around their health care, the law has been lagging behind. Existing laws around advance care plans and medical decision making are often confusing for patients and families, as well as their treating clinicians. Fortunately, this is all about to change in Victoria.  Continue reading

Palace of Care – Que sera, sera

Whatever will be, will be.

He tells me, with a tear in his eye, “She’s my sweetheart.”

She smiles weakly, and her eyes brighten.

He gently kisses her hand in a loving manner.

“No, I am ready.”

“Are you scared?”

“I think I’m dying.”

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Palace of Care – “Thank you for teaching me an important lesson.”

This blogpost is dedicated to a patient that I never thanked for the part she had to play in my palliative care education.

The sharing of patient stories can have a huge role to play in the education of healthcare practitioners and laypeople. Palliative Care health literacy remains relatively low despite palliative care services having been present in Australia and New Zealand for well over three decades. Relatively few healthcare practitioners let alone members of the general public understand the role that palliative care services can have in the improvement of quality of life. Are we sharing the right stories, in the right places, to the right people?

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