Planning care for people with dementia

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Two new resources are now available to help with planning care for people with dementia. Palliverse talked to driving force Prof Meera Agar about the ‘whys’, ‘hows’ and ‘whats’.

Q: Why develop care planning resources just for dementia?

A: People with dementia face unique challenges and decisions related to their care and health care needs as their illness progresses; and supporting their choices is made more complex as they become less able to communicate their needs and articulate decisions about what they want from care. While good intentioned, many health professionals in aged care and other settings may not understand the course of dementia, and there may not always be good communication, involving the person with dementia whenever possible and their families,  and also between the different health professional involved in the persons care.

Q: So how do the new resources help?

A: The two new resources are a website offering practical support for family case conferencing and a report providing guidance on critical recommendations to improve advance care planning. Continue reading

3 online events in the Palliverse this week!

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Here at Palliverse, we love online communities of practice. The monthly #PallANZ tweet chat, co-hosted by Palliverse and Palliative Care Australia, is not the only online educational opportunity that may be of interest this week. While we hope you join us for Thursday evening’s #PallANZ discussion of advance care planning, you might also like to check out the following exciting events: Continue reading

#PallANZ tweet chat: Advance Care Planning

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Advance care planning is an important process that is increasingly being taken up by our community. When done well, it can help those with serious illnesses take control of their future health care. However, many people in our community still do not know about advance care planning, which means those who are likely to benefit from the process are missing out.

How can we do better?  Continue reading

“Do Not Resuscitate” – Is it always right to be resuscitated? @InsightSBS

Tonight in Australia (Thursday, 5 November, 830pm), SBS Insight tackles the topic of cardiopulmonary resuscitation and whether it’s always the right thing to do. (There are some familiar faces in the preview video!)

The discussions on Insight are usually excellent. I’m hoping for some thoughtful conversation about advance care planning, and hearing from people with life-limiting illnesses and their loved ones.

Palliverse will be participating in the Twitter chat surrounding the show (#insightSBS).

You can also join the conversation at Insight’s Facebook page.

I hope there’s enough time for everyone to recover from last night’s Q&A!

@Elissa_Campbell

Elsewhere in the Palliverse – Halloween edition

photo by David Mao itsdavoToday (in some parts of the world) it’s Halloween or, as Caitlin Doughty (@TheGoodDeath) calls it, “Culturally Sanctioned Morbidity Appreciation Day.” Please enjoy these links, which have nothing to do with Halloween but may have something to do with palliative care.

Is death taboo? The Groundswell Project conducted a quick survey. The results may surprise you. (The Groundswell Project)

Health researcher on a mission to get Indigenous men talking about prostate cancer and sexual health (ABC News)

“It’s about starting a conversation…[Doctors need to] throw in a phrase like how you going, how’s the old boy, is he getting up, is he getting the job done?”

“…I find men want to talk about it, but someone has to start the conversation with them.”

The silver tsunami is actually silver-brown. How does end-of-life care differ for minorities? asks geriatrician and palliative care doctor VJ Periyakoil (@palliator) in the Washington Post.

Pulitzer prize-winner Tina Rosenberg visits La Crosse, Wisconsin, home of the Respecting Choices program, where 96% of adults reportedly participate in advance care planning discussions. (Talking Early About How Life Should End, New York Times).

And now, a video about advance care planning!

Going to work, writing letters for the future and speaking your mind: Day-to-day living when you know you’re dying (Independent, UK)

In Australia: Federal Government to legalise growing of medicinal cannabis; Labor calls for nationwide scheme (ABC News). Apparently, we’re all for it: Legalised medical marijuana opposed by only 7% of Australians, poll shows (Guardian Australia)

Here’s a strange story to finish the list – “Parkinson’s disease: Scottish woman Joy Milne prompts study after claiming ability to smell condition.” Odd. Thanks to my colleague Dr Bornshin for the link. (ABC News)

#SoMe (social media) meets palliative care again!

Palliverse loves a bit of #SoMe  interacting with palliative care discussions.

If we have not converted you to tweet chats yet, check out this transcript of the healthcare leaders weekly tweet chat which comes out of North America on a Wednesday 1130 AEDT. This week it was on Palliative Care (yay) but it’s often about change, innovation and patient experience in heath.

http://t.co/h8xF4PnUdx

It highlighted again for me the differences between palliative care in the USA and in Australia and New Zealand.  I know from hanging out on tweet chats out of the USA that often you must sign up to forgo all active treatments in order to qualify for hospice care.

I gave NZ a plug as an example of  a country with a good palliative care system (ahead of Aus cos I think NZ is better with community palliative care integration.) Was I right or wrong? What do you think?

Sonia xx

‪#‎ACPEL2015‬ Day 2 Highlights: from Elissa

Greetings from Munich (Grusse aus Munchen)

The morning session was an opportunity to share advance care planning (ACP) success stories from different countries – Singapore (Living Matters), UK (Gold Standard Framework) and the US (Honoring Choices Wisconsin, Kaiser Permanente). Helen Mason from NZ also presented the findings of her Harkness Fellowship, identifying key components of health systems for successful ACP.

To me, the recurring themes were:
– the need for grassroots, community engagement
– identifying and using clinical and community champions of ACP
– the need for a coordinated whole systems approach
– not limiting ACP to end of life – focus on living well, not just dying, and
– employing continuous quality improvement.

Continue reading

Elsewhere in the Palliverse – #D2KD Edition

photo by David Mao itsdavoWelcome to this week’s collection all things palliative from around the web. There have been some excellent palliative care-related articles published recently in the mainstream media, in addition to coverage of Dying to Know Day.

It’s Dying To Know Day (#D2KD) in Australia tomorrow, an “annual day of action dedicated to bringing to life conversations and community actions around death, dying and bereavement.” D2KD Ambassador Molly Carlile, AKA the Deathtalker, appeared on The Weekly this week, passionately arguing that the community needs to take ownership of death back from the health system, with discussion of advance care planning, preferred place of death, bereavement and more. I love her plans for her own funeral – watch the video above to find out more (it’s an extended version of the interview that appeared on TV). Continue reading

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavoI have a few palliative care links to share this week. If you’re not satisfied, we also share links on our Facebook page and Twitter account (you don’t need your own Twitter account to see what we’re posting), and you can check out our Elsewhere in the Palliverse archives.

At the End of Life Studies blog, Dr Naomi Richards examines the question, “Is the voluntary refusal of food and fluid an alternative to assisted dying“?

Talking About Dying Won’t Kill You, says Palliative Care Australia, writes comedian Jean Kittson (Sydney Morning Herald)

And a palliative care nurse told me that day after day she visited a person dying at home and day after day she walked into a house full of scented candles and rainforest music, until one day she said “Is anyone else sick of these scented candles?” and the family said “Yes”.  “And is anyone else sick of this rainforest music?” And the family said “Yes”. So the nurse said “Well, let’s open some windows, and what music does your mum like? OK, let’s put on some Stones.”

Continue reading

Reflections on Research – the pointy end of the funnel

At the halfway point of the year, and the 5-month point of my 12-month Fellowship, I thought it a good time to stop and reflect. (I have tried writing one of these posts at the 3-month and 4-month marks but became stuck. I hope this is not a metaphor for my Fellowship.)

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After following the above tweet by Helen Bevan, to an article by “entrepreneur turned venture capitalist” Mark Suster, I discovered the “funnel framework” – a marketing model that seems a good fit of my Fellowship experiences so far.