Palliative care is an issue that will affect all of us at some point in our lives, whether as a patient, carer, family member, neighbour or friend. For this reason, Palliative Care Australia is calling 2013 the year to make palliative care everyone’s business. To ensure that we all have quality care at the end of life, and are able to live and die well, we all need to take responsibility for making this happen. National Palliative Care Week is 19th – 25th May 2013 and during this week we’ll be reminding everyone in our communities about the importance of palliative care and asking them to think about how they can make it their own business (Source: PCA, 2013)
It’s National Palliative Care Week and we thought we’d ask you to share your thoughts about palliative care. Here’s what we are asking:
What are 5 things you have learnt about Palliative Care? (OR you can take this question in any direction you like - ie. 5 things you wish you knew about Palliative Care, or 5 things you learnt the hard way, just stick to the 5 things idea)
If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make? (please be as dreamy/innovative as you want here – it’s totally up to you!)
Feel free to contribute on your own blog or send it to us at kerrie@thegroundswellproject.com and we’ll post it here.
I thought I’d get us started, so here are 5 Things I’ve learnt about Palliative Care.
1. Most people aren’t sure what palliative care is. I guess that’s one of the reasons why it’s important we keeping talking about it, but we also need to take action in our everyday lives to raise awareness about end of life care. What can you do?
2. When I think about Palliative care now I mostly think about life and living. I see dying as a part of our living, and we are in fact all dying it is just that some of us take a long time to die while others slip away in a few hours.
3. Getting palliative care early can mean people living with terminal illness can live longer with a good quality of life. Sounds like a good reason to talk about it.
4. Community participation in palliative care is going to be essential to sustain the care that our ageing population in Australia needs. I have seen one example of this model in action in Kerala India where Dr Suresh Kumar and his colleagues are engaging the whole community in palliative care initiatives. This model is being adapted by palliative care services in England and Ireland, but what about here in Australia?
5. There are a growing number of community based initiatives working in innovative ways to provide end of life care in Australia – here are a few we know: Southern Highlands Community Hospice, Liferites & Lifecircle. Please share yours!
When we asked Dr. Yvonne McMaster, Palliative Care Activist and retired Palliative Care Physician the question about palliative care being everyone’s business. Here was her response:
If it was everyone’s business, fully funded and staffed?
At first we have a bucket-list of things we want to do before we die. It can be good to know that now is the time to stop putting these things off. Often the grass seems greener and the sky clearer as every day takes on a new meaning. We talk to our family and friends with frankness but also with pain at the forthcoming parting. We decide who will get our treasures. Sometimes we start giving them away.
As we get to the end of our life we want to spend the time with those who are closest. We know the Palliative Care doctor and nurse. We know that they will keep us comfortable. We know because they have already demonstrated it to us. They come on time when they say they will so we know that they are reliable. The OTs have come with the equipment – rails lest we fall symbolise the care. Everything is in place. Our carers know what to do and feel supported by the team and by the community around. Gradually our horizons narrow. The house, the bed become the best places. Then sleep is our best friend. As we are checking out of life there are people there who can help our carers and we know that they will ensure the support needed later on, after we are gone.
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National Palliative Care Week runs from May 19 to 25th and is an initiative of Palliative Care Australia.
Kerrie Noonan (@keznoo) is a founding director of The GroundSwell Project. She is a psychologist who has worked in palliative care, oncology and as a grief counsellor and is finishing her PhD on Social change in the end of life sector in Australia. Kerrie@thegroundswellproject.com
FilmLife screening Night is here! April 13th 6-10pm with the main screening at Parramatta at Information and Cultural Exchange and Footscray Community Arts Centre in Melbourne. Join us and special guests from the arts and health sectors.
We invited young filmmakers from all over Australia to enter a short film in the FilmLife Festival. FilmLife is all about increasing awareness and sparking conversations about organ and tissue donation in Australia. It brings together the creativity of the arts with the expertise of the health sector and encourages young filmmakers to get us thinking so we will take action about organ and tissue donation.
FilmLife Project is an annual initiative that encourages young and emerging filmmakers to use their creativity to change lives. FilmLife is the creative brainchild of The GroundSwell Project in 2012-13 it is produced in partnership with Nepean Intensive Care Unit, Information and Cultural Exchange (ICE) in Parramatta and Footscray Community Arts Centre in Melbourne. Click HERE to read more about our project partners.
The FilmLife Project is funded by the Commonwealth Government through the Organ and Tissue Authority’s Community Awareness Grants program to support innovative projects that promote family discussion about organ and tissue donation.
The GroundSwell Project is proud to be running the FilmLife Project again alongside partners Nepean Intensive Care Unit, Information and Cultural Exchange and Footscray Community Arts Centre.
FilmLife exists to bring to life the stories of organ and tissue donation through the eyes of young filmmakers. FilmLife films help spark conversations and bring vital awareness to the topic of organ and tissue donation in Australia.
Get involved… Attend a free workshop make a Film and tell a story that will change lives. The Winner of Best Film will take home the Canon 5D.
This year, supporting the storytelling and conversation we have a blogging comp.
You can also help us promote the power of creativity with the “creativity can…” campaign on ABC Pool.
There are many wonderful ways to use your creativity to change lives and start conversations in Australia about organ and tissue donation.
The project is sponsored by The Organ and Tissue Authority & the DonateLife Week Community Awareness Grants.
One of our most popular posts in 2012, was Dr Peter Saul’s call to action encouraging us to “occupy death“ at TEDxNewy.
In the spirit of Peter’s message our final post this year is dedicated to people living with terminal illness and with dying this holiday period.
The end of the year is often a time to reflect on the year that was and a time to make plans for the year ahead. Planning for our dying however, is rarely discussed easily and less than 10 percent of Australians prepare by developing an Advance Care plan.
In this guest post from GP Dr Edwin Kruys, he explores 3 common end of life questions.
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3 end-of-life questions we all need answered
The transition from curative to palliative care sometimes feels like an emotional roller coaster. To reduce stress and fear of the unknown it’s good to have a look at what lies ahead.
I recommend that people talk to their GP in an early stage to discuss the issues surrounding dying. This is a difficult and emotional conversation for all parties, but usually there is a sense of relief afterwards. Here are three important questions patients and their family members always ask me when the end is in sight.
How long will I live?
This is always hard to say. I honestly often can’t tell, especially in the early stages. When people stop eating or drinking it is usually a matter of days. I urge people to do what they need to do when they still feel well. Start today – don’t wait until tomorrow. This may include talking with family about end-of-life preferences and sorting unfinished business.
It is advisable to organise a will, power of attorney, and advanced care directives, as well as a funeral home. Talk together about support and/or counselling for family, friends and carers during the deathbed and afterwards.
Dying is a gradual process. The body is slowly shutting down. The dying person will experience loss of appetite, diminished energy levels, and weakness. There is a gradual loss of interest in activities. Uncomfortable symptoms can be treated, such as pain or shortness of breath.
What can we expect?
There is huge potential for growth of the mind during the last stage of life. This is a time when people look back on their lives in a philosophical, spiritual way and strengthen the bonds with their loved-ones.
Dying can also be very lonely, especially if the communication with others is limited. Friends and family members may not know what to say or feel uncomfortable talking to the dying person. This can lead to social isolation. Professional help, like counselling, is sometimes required.
During later stages the dying person will be less interested in social interactions. Contact with close family and friends becomes a priority. The patient will usually sleep a lot.
Image: When I was writing this article, my 3-year old daughter Jill made this drawing. I thought it was a beautiful illustration of the emotional roller coaster during the final stages of life. In my experience most people eventually find resolution and are able to die peacefully.
The patient may stop eating and drinking altogether and go into natural dehydration. There can be difficulties with swallowing and confusion may occur. Reduced urine output and less frequent bowel motions are common, as is incontinence. Shortly before death the breathing pattern changes. The colour of the skin may become bluish.
During this end stage people may have their eyes closed but can often still hear. It’s good to talk to the dying person. Some say we should let them know it is ok to let go.
Medication is available to, for example, reduce the sensation of thirst and manage confusion. In Geraldton we have a fantastic palliative nursing team that enables people to die peacefully at home or in a hospice if they wish to.
Will I be in pain?
No, in almost all cases it is possible to control the pain and keep people comfortable. Managing worries and anxiety also helps to reduce pain levels. Medicines can be given as tablets, capsules, liquids, patches, and continuous infusion.
Our thoughts are with the many family members and caregivers caring this holiday season. If you are a caregiver there are some tips for caring during the holiday season here.
We would like to thank Dr Edwin Kruys for contributing to the final GroundSwell Project blog for 2012. If you would like to contribute in 2013 please contact kerrie@thegroundswellproject.com for more information. In 2013 we are launching a national initiative that encourages greater awareness and promotes community actions about the experience of death, dying and bereavement. We look forward to sharing more details with you soon, in the mean time please follow us on Twitter and Facebook.
The GroundSwell Project is proud to announce that FilmLife is back for 2013. This year we are working again with Nepean Intensive Care Unit, Information and Cultural Exchange (ICE) and new partners Footscray Community Arts Centre and the Coalition of Mischief.
On Friday December 7 we all gathered at Information and Cultural Exchange in Parramatta to launch FilmLife 2013.
We also launched a new national community service announcement (CSA) adapted from the winning film of 2012 ‘Ask the Hard Questions’ by Josephine Lie. The Hon. Julie Owens member for Parramatta officially launched the CSA for us on behalf of our sponsor The Organ and Tissue Authority.
It was a terrific evening catching up with past filmmakers, new filmmakers and our special guests Jessica Bellamy, Damien Power and of course Semaema who sang ‘I believe I can fly’.
Please check out our facebook page for all the photos from the night, in the mean time we are pleased to present the 30 second and 90 second versions of the CSA. Please join us in creating greater community awareness about organ and tissue donation by sharing with your friends and family.
Here they are - the Hidden Stories films! The films were shown at the closing event of ‘Hidden’ October.
If you missed it – ‘Hidden Stories’ invited young people aged 14-18 to make short films over a weekend of storytelling and learning.
Hidden Stories began as an idea to ‘lift the lid’ on the stories of Rookwood and true to our values here at The GroundSwell Project we invited young people to meet people who have intimate family connections to Rookwood. Thanks to Merv Manning and Trish Keating for spending time with us and sharing your family stories.
Well done to all the Hidden Stories filmmakers Christina, Jack, Anastasya, Kahli, Ramon, Maddy and Olivia. Thanks again to the awesome Elias from CuriousWorks for facilitating the workshops.
A wonderful wrap-up of the day can be read on the Hidden website HERE
HIDDEN: A Rookwood Sculpture Walk is an on-site sculpture project, revealing artists’ responses to Rookwood Cemetery, one of the largest cemeteries in the Southern Hemisphere, and the themes surrounding love, death, loss and memory. Developed in 2009 to establish Rookwood Cemetery as a place that actively engages in, and supports, the cultural landscape of Western Sydney, HIDDEN: A Rookwood Sculpture Walk promotes the work of a diverse range of emerging and established artists from both Western Sydney and regional areas.
The GroundSwell Project is proud to sponsor a $500 award to the ‘People’s Choice’.
We are happy to announce the winner of The GroundSwell Project People’s Choice award is Thomas C. Chung for his work ‘I Just Wanted To Say… I Still Remember You’.
“My practice draws inspiration from folk tales, childhood memories and events from my personal relationships, devoting myself to labour-intensive and handmade processes. The artworks in this exhibit are part of an ongoing series that I’ve been creating – knitted sculptures which recall a loss and hope within their suspended present. What I’ve always asked for the viewer to see, is something beyond the obvious, with ‘cuteness’, tactility, fibres, textures and minimal forms merely being a veneer, hiding unspoken anxiety. My works weave difficult issues about the world into the forms of toys, stories and lost memories – giving the viewer a detached, simulated experience”. Thomas C. Chung.
For more information about Thomas and his work please visit his website.
Congrats to Thomas and to all the Hidden Artists.
“I Just Wanted To Say… I Still Remember You” by Thomas C. Chung
Please join us to celebrate the conclusion of the most successful Rookwood Sculpture Walk to date.
The GroundSwell Project People’s Choice prize will be awarded to the winning artist and we will premier the ‘Hidden Stories’ short films made by young people.
Date & time: Sunday October 14 1-4pm
Place: The Village Green cnr of Hawthorne Ave and Necropolis Drive, Rookwood Cemetery.
We would like to take this opportunity to congratulate the Hidden Sculpture Walk Team at Rookwood Cemetery – Bethany and everyone in the Anglican Office, Curator Cassandra Hard-Lawrie and all the Hidden artists.
A huge thank-you also to Elias and CuriousWorks for collaborating on ‘Hidden Stories’ project.
‘Hidden: A Rookwood Sculpture Walk’ opens this week-end
Hidden is a fabulous event run by The Anglican and General Cemetery Trusts at Rookwood cemetery. The GroundSwell Project is proudly associated with Hidden through our sponsorship of the People’s Choice Award and our Hidden Stories Project.
If you have never been to Rookwood, Hidden is a wonderful introduction to one of Australia’s most historical and culturally rich sites. If you can’t make the opening on Saturday, don’t worry – the exhibition is open from September 1 to October 14.
Please find all the information you need to get involved:
The Opening of the Fourth Annual Rookwood Sculpture Walk:
When: SATURDAY 1 SEPTEMBER Time: 2 – 5PM Where: ON THE ‘VILLAGE GREEN’ – Corner of Hawthorne Avenue & Necropolis Drive, Rookwood Cemetery
HIDDEN: A Rookwood Sculpture Walk is an on-site sculpture project, revealing artists’ responses to Rookwood Cemetery, one of the largest cemeteries in the Southern Hemisphere, and the themes surrounding love, death, loss and memory.
HIDDEN was developed in 2009 to establish Rookwood Cemetery as a place that actively engages in, and supports, the cultural landscape of Western Sydney. HIDDEN: A Rookwood Sculpture Walk promotes the work of a diverse range of emerging and established artists from both Western Sydney and regional areas.
HIDDEN was developed to demonstrate to the community that there is more to Rookwood than just funerals and memorials. Rookwood is a place rich in heritage, history, culture and nurturing and developing the cultural fabric of the site is of great importance to ensure its future longevity. The HIDDEN exhibitions step outside the notion of mainstream galleries, and even outside the typical ‘outdoor sculpture show’, and invites artists to ponder the notion of mortality and its related themes. Audiences witness creative artistic expression in a typically unconventional yet extremely meaningful context.
Every year, artists are invited to respond to the site using engaging forms of communication. The works disclose shared narratives about themes relevant to the space in a way that is as thought provoking as the site itself.
‘None of the hard times I’ve seen, and I’ve seen plenty, lasted forever. Even this dying business will be over one day. I’ll just wake up dead one morning and that will that. What can I tell you?’
So says Max, an 86 year old man dying from stomach cancer. He’s one of ten group members you’ll meet and get to know when reading The Amateur’s Guide to Death and Dying.
The book is written by Richard Wagner who runs a non profit organisation called PARADIGM Programs Inc whose mission is ‘enhancing the end of life’. One of the main initiatives of the organisation is a ten week structured support program that focuses on death and dying. It is primarily targeted at people diagnosed with a terminal illness, but anyone can do the course.
The Amateur’s Guide to Death and Dying is a ‘workbook’ that takes the reader through the course. There are ten chapters that cover a wide range of territory. It is presented as a combination of group sessions, homework tasks and reflection exercises. There is a detailed blurb about each person and from then on we ‘hear’ from them in the first person, as if they are speaking directly to us in a group situation. They are fictional creations, but based on amalgams of real people. Wagner evokes their personalities well. I felt like I was hearing from ten distinct voices.
The content is comprehensive. We start with a discussion about perceptions of death, including why it still seems to be a taboo subject for so many people. Raul, 18, has polycystic kidney disease. He says how sick he is of ‘fightin’ something I can’t win.’ He hasn’t told his parents about attending the group because he knows how scared they are to accept the fact that he won’t live a long life: ‘They want me to keep praying to all these saints for some kinda stupid miracle. There are so many saints I can’t even remember all their names.’
From there, chapters move through many subjects and tasks including: writing your own obituary, legal, medical and financial matters, sexuality and body image for people who are dying, spirituality and belief, what happens to the body when we die, and the question of assisted, or pro-active dying.
The book is not always an easy read. It opens up questions about our own lives, including regrets and lost chances: ‘I haven’t done anything extraordinary, never won an award, never had my picture in the paper, never went to college, never even had a real job. I’m just an old woman who hasn’t anything to show for her life. And that makes me sad,’ says Janice, 62.
Reading such personal and intense stories has a significant emotional impact. I had to read slowly and take time out on occasion. And of course each story, task and provocation is designed to bring to the surface our own fears, hopes and regrets about death. This is a stated goal of the book and Wagner’s work in general. He is seeking a radical shift in how we perceive dying, specifically in terms of integrating it more consciously into every day life.
It’s not just about increasing awareness. Wagner believes we can live more full lives by embracing death. One of his motivations for creating the program and the book was because: ‘… the wisdom people come to during the dying process often died with them. There simply wasn’t a medium for collecting this abundant wisdom and thus it was frequently lost.’
There is a satisfying narrative arc to the book. Each of the participants comes to a sense of peace and acceptance about their situation. Many have renewed hope and vigour. ‘I feel like I’ve been able to look death in the face these past ten weeks and I didn’t flinch. So maybe, just maybe, death is not so foreboding after all,’ says Kevin, 39.
Some of the final statements in the evaluation section are a little pat. The book allows a neatness and sense of conclusion that is generally lacking in life with all its messiness. This is a minor point though, as the book’s content never shies away from the difficult and the unresolved.
The Amateur’s Guide to Death and Dying is a useful and practical tool for any person approaching their own death, or the death of a loved one and would make a valuable resource for health and community organisations working in this area.
Spending focussed time meditating on the end of life is not something we do often. It’s confronting to face our own mortality, but there’s something vital, even exhilarating about the brief moments of insight that can come. I’d recommend The Amateur’s Guide to Death and Dying to anyone seeking to engage with questions about death and the meaning of life.
The Amateurs Guide to Death and Dying by Richard Wagner, Ph.D., ACS is published by The Nazca Plains Corporation ®, Las Vegas, NV
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