Planning care for people with dementia

CjRDzR9UUAQ9woR.jpg-large

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

#PallANZ tweet chat: Advance Care Planning

PallANZ 201601

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

Palliverse takes over @WePublicHealth – for one week only!

FullSizeRenderThis week, Palliverse will be hosting the @WePublicHealth rocur (“rotating curation”) Twitter account. You can read more about @WePublicHealth, “an experiment in citizen journalism meets public health”, over at Croakey blog.

This week, Palliverse will discuss a number of public health palliative care topics such as equitable access to palliative care in Australia/New Zealand and globally, access to essential pain medicines, Compassionate Communities, advance care planning, and more. 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)

beautiful essay on a doctor’s perspective on end of life care

This really resonated with me… well worth a read.

A young doctor describing her developing perspective on a “good death”; on dying and end of life care in our healthcare system.

http://www.vox.com/2015/10/19/9554583/doctor-good-death

Sonia

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

Elsewhere in the Palliverse – Weekend Reads

photo by David Mao itsdavo

Welcome to this weekend’s reads. People seem to enjoy the cute animal stories, so I’ve included one (near the end, if you want to read it first).

The latest paediatric palliative care video (below) from Little Stars is about treating chronic pain in children. It’s nice to see how the interdisciplinary team interacts with, and respects, the girl in the video.

An article that is all over my social media feeds this week: Knowing How Doctors Die Can Change End of Life Discussions. It also brought back to mind this article on How Doctors Die. (NPR)

“I felt like I was beating up people at the end of their life…I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew that it very likely not going to be successful. It just seemed a terrible way to end someone’s life.” Continue reading

Shifting the focus of care from disease to people – heartfelt article about dying in acute hospitals

This article is going a bit viral on social media. Does it mirror your experiences? It certain does mine, having worked for a long time in consultation services in acute hospitals. There have been a number of comments and letters to the Age supporting the message of the article, written by a senior doctor about the death of his father. http://www.theage.com.au/comment/hospitals-must-shift-focus-of-endoflife-care-from-disease-to-people-20150707-gi6joz