Leeroy is a Palliative Medicine Specialist in Melbourne, who has worked in Palliative Care in the UK, New Zealand and Australia over the last ten years.
5 Most important things I have learnt from Palliative Care:
Holistic care – Medicine has lost sight of the person and their life prior to the consultation, but Palliative Care adjusts our focus to see what matters most to a life compromised by disease. Hopefully Medicine is changing and the physical, psychological, social and spiritual domains of holistic care are being recognised as integral aspects to healthcare in general.
Communication – Consultations should be a conversation and never a script. Palliative Care requires excellent communication skills, but more than this is the desire to improve on every encounter. It can be complicated by non-verbal cues, hidden agendas and silences; defused by listening, humour and touch…but remains a process of continual learning.
Family involvement – Make the family feel part of the clinical team – they know their loved one better than you, so listen and learn about the connected lives before you. Allow them to tell you stories about the person – you’ll gain an invaluable sense of who they really are and provide an opportunity for them to reminisce and bring meaning to life.
Human connection – Although we often see people for a fleeting moment in their lives, we also have only one chance to make a difference to that life and their family’s lives. Medicine has much to offer, but “quality of life” is a variable commodity, changing with a joke, hearing a song, seeing a picture, or the mere act of human kindness. Being present often matters most and if the moment moves you, it was meant to – just like your favourite films move you to laughter, tears or fear. People know what lies ahead of them and they deserve your humanity and presence.
Human spirit – I am continually humbled by the spirit of those whom I have met. It has been a privilege to be part of such a personal time for them and their families. They have made me the doctor I am and made me reflect on the person I am. To make a difference to someone’s health is what Medicine is about; to make a difference to someone’s life is what living is about.
If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?
If Palliative Care was “Everyone’s Business” then all dying patients would be cared for in the venue of their choice, as documented in their advance care plan. Patients and their families would be better informed and prepared via the excellent communication skills of the healthcare professionals involved in their care. Communities would work together to support those dying at home, and/ or their carers. Aged-care facilities would be better staffed and funded to provide holistic care. Medical teams would incorporate holistic care as standard care and the transitions between primary and secondary care would be smooth. Palliative Care would be viewed as the fundamental platform upon which healthcare is built – from education through to clinical services. Palliative Care would be recognised for symptom control as well as end-of-life-care. Everyone would be better informed about death and dying, as well as the distinction that separates euthanasia from Palliative Care.
The above would connect us all to our neighbours and rebuild our communities. Our open discussions would allow more informed decisions to be made around healthcare. Dying would regain an important role in our communities to remind us of the fragility of life and the importance of living, as well as the human capacity for kindness, humility and respect.
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National Palliative Care Week runs from May 19 to 25th and is an initiative of Palliative Care Australia.
Join the discussion by blogging or adding your 5 things!
John Rosenberg is a registered nurse with a clinical background in community-based palliative care. He has been an active researcher since 1999 and an academic since 2003. His 5 things learned about palliative care come from both the head and the heart…
1. Stay calm.
2. Shut up and listen – it’s not about you.
3. People will often die as they’ve lived. Don’t assume that resolution is on everyone’s bucket list.
4. Never stop learning your craft. Become a lifelong learner – both the science and the art of palliative care are ever evolving.
5. Live each day as if it’s your last – one day, you’ll be right.
If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?
If palliative care was truly everyone’s business, palliative care services would be uncomfortable… at least for a while. We’d see ownership of dying shift from the expertise of the professions to the wider community; dominance of the discourse would move and services would have to enter into genuinely equal partnerships with the communities they serve. Resilient, skilful and engaged informal networks would be equally as important as clinical expertise and the organisation of professional care. “Laypeople” would be represented at the governance level of palliative care services – not just sympathetic ex-clinicians, but engaged and informed community representatives. We would see discussions about dying well in all sorts of places – schools, community groups, churches, boardrooms, etc. We would encounter thought provoking and discomforting challenges to our assumptions about “what’s best”. Our expertise would inform but not dominate the discourse on dying…eventually.
What difference would this make? All the difference in the world. We’d share our expertise in order to build communities, not simply provide an important but incomplete response to their dying.
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National Palliative Care Week runs from May 19 to 25th and is an initiative of Palliative Care Australia.
Join the discussion by blogging or adding your 5 things!
My first encounter with the idea of “palliative care” was in the early 90s, when, as a playwright, I was commissioned to write a play for an international conference on hospice and palliative care.
The first thing I learned was that the very idea of palliative care was, back then, a relatively new concept both within the medical profession and beyond. Happily, things have changed in the past two decades and there is now a much broader-based community awareness.
I am always interested in the origins of words, and the second thing I learned was that “palliative” comes from the Latin, palliare, meaning “to cloak.” This idea, imbued with associations of lending comfort and warmth, has always intrigued me.
I learnt that palliative care is holistic in approach and deals with much more than medical matters.
I learnt that palliative care is about quality of life.
I have subsequently learned, from personal experience, that early engagement with palliative care can bring enormous benefits, not only to individuals approaching end-of-life, but also to their families and friends.
Palliative care is everyone’s business.
When palliative care is truly everyone’s business it will be part of community conversations and family lives and people will have already shared their hopes and wishes about what they might imagine for themselves as a good death. The idea of care itself will be opened up and understood to be so much broader than simply ministering to and charting changes in the body. Increased death literacy, myth-busting, shared community know-how about the dying process, and early engagement with the idea and the possibilities of palliative care will empower people approaching life’s end to take greater control in determining the course and the narrative of their final years and months, days and hours. Families, children, friends, and neighbours will have confidence and support to share in the intimacy, the privilege and the mystery of attending another human being to the end of life.
Another guest post from a wonderful person in The GroundSwell Project network – award-winning filmmaker Rohan Jones from Adventures in Genre. We met Rohan and his partner Gerlee when they were our FilmLife Project trainers in Melbourne this year. We invited Rohan to write about the 5 things he has learnt about Palliative Care.
5 things I’ve learnt about palliative care, in no particular order:
I learnt that there were palliative care facilitates in public and private hospitals, as well as not for profit hostels (where my mum spent the last two months of her life).
In the hostel my mother was at, volunteers from the local community cooked/prepared meals, as well as help with admin, tend the gardens etc. Some of them knew mum which was nice for her.
I learnt the level of care is extraordinary. The staff enabled mum to keep her dignity as she lost control of her physical and mental capabilities. They helped her shower and go to the toilet, and as she became bedridden, they turned her with care and empathy. Being able to role over is such an easy thing when you’re healthy. But mum was unable to move in the last few weeks. The staff always did their best to make her comfortable, also with her breathing, eating and so on.
The staff from the funeral home came to pick mums body up from the pall care hostel. It may seem obvious to some, but I hadn’t thought of details like this until close to the end. But it was not rushed. We had time to spend with her if we needed.
I’d heard of palliative care, but was vague about what it involved. As mum got closer to needing it, finding what was best for her seemed daunting. But in the end, it was as simple as making an appointment with the hostel, then meeting with the staff with mum. When the staff gave us a tour, I was almost overwhelmed with tearful relief, as I could literally feel the caring atmosphere. They even offered for mum to go in for a short stay after she had radium as she was knocked about by the treatment – just so she could recover and rest for a while. In general though, and this seems to be quite common, the hostel was only able to take people in their last three months of life. And that was difficult for us and medical staff to judge.
If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?
I’d say taking that hostel model further. The beauty of the place is that there were only six rooms, and three shifts of at least two to three nursing/carers a day. This afforded very intimate care, so I can’t imagine better. Ultimately it was a great facility, but it would be nice if money was put into making it more of a haven, like a bush-like setting with a lot more nature around. I think this gives people even more peace – surrounded by the smells and sounds of the natural world. I would also like to see the option of euthanasia. I’m not sure if mum would have taken it. But it would have been nice for her to have the option.
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You can see Rohan and Gerlee’s work here and here. National Palliative Care Week runs from May 19 to 25th and is an initiative of Palliative Care Australia.
Join the discussion by blogging or adding your 5 things!
Molly is the deathtalker and a leader in the palliative care sector. Here are Molly’s 5 things I’ve learned …
1. No one wants to talk about death until it’s too late……..so we need to find ways of normalising death and encouraging conversations that aren’t confronting or scary.
2. Death is EVERYBODY’S business, it’s not the province of doctors or hospitals or palliative care……………we’re all going to die, so we all have a vested interest in informing ourselves so we can live our lives rather than spend our lives fearing our death.
3. You don’t have to be old to die…………babies die, kids die, young people die, so we need to include kids and young people in our conversations.
4. You can use as many screening and assessment tools as you like, but the only way to REALLy get to know a person is to keep asking one simple question…………..four simple words………………..”Who is this person?”
5. After you’ve asked the “who is this person?” question………sit down and SHUT UP! You’ll be tempted to interrupt, to offer an opinion, to dispute an answer, but if you do anything other than listen and ACTIVELY listen, you’ll break the connection and have to start all over again.
If Palliative care was truly “everyone’s business” in Australia what would that look like and what difference would that make?
Margaret in conversation
Death conversations would be embedded in primary, secondary school and tertiary curricula (including all undergrad degrees, not just the caring professions…………accountants and architects need to understand this too). All people would understand dying, no matter their culture, language, age or gender. All people would understand death as part of life and by demystifying the process, all people would be well equipped to nurture and support grieving members of their community, be that their school, work, cultural or geographical communities. Ritual would be rediscovered as an important component of community support and acknowledgement of lives lived and people’s stories. All employer organisations would need to demonstrate “compassionate workplace” initiatives, including leave flexibility, superannuation access flexibility for terminally ill employees, support for the families of employees who die unexpectedly, support for other employees when a colleague dies and memorialisation of deceased employees.
The media would report on and talk about death in a positive way without reverting to “battle” language. People would have ultimate control over the circumstances of anticipated death, where they die, who is there, how they are dressed, how they manage pain and symptoms. Traumatic or unexpected death would “kick start” community support for the grieving family. Advance care planning and organ donation would be standard and people not wanting to engage in either would need to “opt out”. Aging would not be viewed as negative but older people would be embraced by their community for their wisdom and life experience. Finally, death would no longer be something to be feared, but acknowledged as the inevitable culmination of a human existence that is valued by both the dying person and the people they love and reflected in the communities of which the person was a member.
That’s my dream…………….don’t know if I’ll achieve it all in this lifetime, but hoping I’ve sown enough seeds in my kids, their friends and the communities in which I live and work, to be confident that this is how the future will look!
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Molly was on Radio National Monday Night with Ira Byock talking with Waleed Aly on the topic ‘making death easier‘. National Palliative Care Week runs from May 19 to 25th and is an initiative of Palliative Care Australia.
Join the discussion by blogging or adding your 5 things!
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 keep 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. Kerrie is currently 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.
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