How would it feel to be told that you are going to die?
That you will not be able to leave the ICU.
That you will not be able to leave the hospital.
That you will never be able to return home.
You receive a call saying that you will die from your illness within three months.
You believe them and prepare for death. You organise your own funeral and your burial plot.
You finally accept your situation, that you are dying.
Then it doesn’t happen.
Again and again and again.
What do you do now?
You’ve beaten the odds over and over. By many weeks, months, and years.
You don’t know what to believe any more. You don’t know who to believe any more.
It could all be taken away at any time. Do you dare to dream? Do you dare to hope?
Somehow through all the disasters you carry on, something keeps you going. Some inner strength. Some kind of fire keeps on burning inside. Some light that refuses to dim. A strong spirit coupled with too much to live for. A fervent wish to meet the next generation. To be part of their life. To grab onto whatever precious bonus periods that life may have to offer.
Following on from a successful digital conference in 2021, the Advance Care Planning International (ACP-i) Committee is excited to announce a series of webinars in 2022, focusing on how different healthcare systems are implementing advance care planning.
Each of these webinars will put a spotlight on one country, with invited speakers giving presentations which will investigate the different components and ingredients that go into successful ACP programs in their country or region. In other words, exploring “what’s in the ACP pill?” Webinars will be one hour in duration, with one or two expert presenters and time for panel discussion and Q&A.
The first of these webinars will go down under, with presentations from Australia (Tuesday March 22nd 10pm-11pm AEDT) and Aotearoa/New Zealand (Wednesday March 23rd 10am-11am). The webinars are free to attend, but registration is required through the ACP-i website.
The Australian webinar on Tuesday March 22nd will feature Jill Mann (Barwon Health ACP Program Manager) and Dr Leyton Miller (Queensland Health Palliative Care Consultant), with the session facilitated by Dr Craig Sinclair (University of New South Wales). For more details and to register, visit https://www.acp-i.org/
In a stroke of good planning (or was that good fortune?), the Australian webinar will also occur during National Advance Care Planning Week 2022. Advance Care Planning Australia coordinates this annual awareness-raising week, with a series of events being held around Australia, in person and online. The key message is ‘Your Choice. Now and Always.’ To find out more about events in your area, visit the Advance Care Planning Australia website.
As part of 2022 National Advance Care Planning Week, we hope you can attend and participate in this global conversation.
Our lives are increasingly digitised. I remember when my grandparents died, we went through their paper phone contact book to find out who we had to call. Now, with everything from banking to social media taking place online, things have changed.
How can we prepare for our #digitaldeath, after our bodies have died? What will your #digitalafterlife look like? #EOLC #pallanz
In her short videos she explains things that we commonly see in end of life care.
Julie McFadden’s engaging videos have gone viral. Awesome!
How else could social media help us in terms of palliative care promotion?
How can we use these platforms for good?
How can we extend our reach further?
Who else can we help to extend their reach?
How can we help our friends and colleagues in other less developed places provide palliative care better?
Many of us around the world, myself included, did not feel at all prepared by health care school curricula which continue to lack palliative care education.
Personally, in my spare time, I am working on a freely downloadable “Dummies Guide to Palliative Care” book aimed at newbie health care practitioners. Contents to include: Did you know there are five main symptoms when people are dying? Here’s how to identify them, and treat them…
Please let me know if you are keen to contribute, as doing it by myself might take longer than if I had some helpers.
Delirium is a favourite topic of ours at Palliverse – it is experienced by many people with palliative care needs, including at the end of life, and is often distressing to the person, their loved ones and health professionals providing care. Despite this, it remains poorly recognised, underdiagnosed and poorly treated – not least because the evidence base is still growing.
They have suggested some Actions to Take on #WDD2017. I’ve listed them below & with some thoughts on how to take action.
Commit to using the term ‘delirium’
If you hear someone using terms like “agitated”, “restless”, “aggressive” or “pleasantly confused”, think – could this be delirium? I use the term delirium, document it and make sure it’s communicated in the medical record and letters. Recognising and diagnosing delirium allows us to educate patients and their loved ones, as well as providing the best delirium care possible.
Screen your patients for delirium
People at risk of delirium, who should be screened, include those with serious illness, those aged over 65 years and those with underlying cognitive impairment. This includes many of the people cared for by palliative care services! The diagnosis of delirium may be missed, delayed or misdiagnosed without screening, as signs may be subtle (especially in hypoactive delirium). There are multiple simple bedside screening tests for delirium, and although not all these have been validated in the specialist palliative care setting, they are still useful. The 4AT is a freely available screening tool that can be administered by any health professional and does not require training.
Listen to patient and family stories about the experience of delirium
What may seem “pleasantly confused” to staff members can be very distressing for the delirious person and their families. Being agitated, aggressive or “just not themselves” can be distressing for patients and families to witness – it is important to acknowledge these emotions and provide education about delirium. (See “Michael’s Story: the fear on his face was palpable” for a wife’s experience of her husband’s undiagnosed delirium.)
Engage your leadership in a discussion of delirium
If the above isn’t enough to convince your leadership to take note, delirium also increases the risk of health care complications like falls, pressure injuries, prolonged length of stay, and mortality. For those in Australia, World Delirium Day is a great time to introduce your leadership to the recently released Delirium Clinical Care Standard (which we’ve covered here before).
Educate health professionals about delirium
Delirium does not “belong” to just one group of health professionals or one specialty. It’s common, especially in palliative care, and important for us all to know about it. Some of my favourite educational resources are freely available at the Scottish Delirium Association, plus this 5-minute video from UK-based Delirium Champion Dr MS Krishnan. (I’ve shared this before but it’s worth sharing again!)
As a final bid to raise awareness, you can participate in a #WDD2017 Thunderclap via your Facebook, Twitter or Tumblr account, to alert your friends and followers to the importance of delirium.
This month, we are excited to explore how palliative care can help to support young people in our community living with serious illness! Our upcoming #PALLANZ tweetchat to be held at 7pm (AEST) on Thursday 30th June will discuss topics related to the palliative care needs of children and adolescents and their families. We will also be featuring some guest blogs from new Palliverse Contributors working with young people in Paediatric Palliative Care (#pedpc).
During our #PALLANZ tweetchat, we hope to bring together those interested to talk about how a kid’s #pedpc service can help young people with serious illness to live well; when a young person might meet the #pedpc team; and where they might like to receive care. We’ll also imagine we have a magic wand able to do anything we want to improve the available supports and share these ideas and other helpful resources!
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 →
Grief and loss is something we will all face at different times throughout our lives. Whether it is the death of our pets, our friends, our children, siblings or parents; the experience and expression of grief in response to these losses can be a very personal and individual thing. Grief can also arise in anticipation of loss. For those living with life-limiting illness, living with the loss of social role and professional identity can be especially challenging.
Thoughts about old, new and future losses can be particularly common during the festive season. For some of us, it may represent an anniversary of the death of a loved one, and bring with it painful memories of loss. Some might be facing their first Christmas ‘alone’, while others may be grappling with the possibility of celebrating their ‘last Christmas’.
While living with grief and loss is a personal experience, we don’t have to endure it on our own. As a community, there are many ways that we can support each other. Join us to talk openly about living with grief and loss.
This 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 →