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 →
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.
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.
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).
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.
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?
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.
Welcome 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 →
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.”
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.)
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.