pca palliative care australia- e-bulletin february 2014
TRANSCRIPT
In this issue Policy update 2
News 5
Na onal Pallia ve Care Week 8
Member updates 9
NSAP update 11
Sector News 11
Educa on 12
Resources 14
Conferences and events 15
Have a story? Email Claire@pallia vecare.org.au
July 2010
Change Day—March 6 #LetsChatAboutDying
Change Day is about the collec ve energy, crea vity and ideas of thousands of people who work to improve the health and wellbeing of others.
Pallia ve Care Australia is ge ng involved in Change Day, and will join thousands of other people across Australia to demonstrate how we can all take one simple ac on or enact a new idea to make a difference and improve outcomes for clients, consumers and pa ents, their families and their carers.
Anyone can take part. Change Day is open to everyone who cares about improving health and wellbeing and doing things be er together.
From the President It was my pleasure to a end an a ernoon tea hosted by the Governor‐General, Her Excellency Quen n Bryce AC CVO and Mr Michael Bryce at Government House on February 24.
The occasion was an opportunity for Pallia ve Care Australia, and a number of other community organisa ons, to formally thank Her Excellency for her patronage and support of pallia ve care.
The Governor‐General has been Patron of Pallia ve Care Australia since 2008 and was formally the Patron of Pallia ve Care Queensland. During that me she has been incredibly suppor ve of the work of our organisa on, hos ng events at Government House, sending messages of support during Na onal Pallia ve Care Week and the Australian Pallia ve Care Conferences, and also visi ng a number of pallia ve care services around the country.
We have been very fortunate to have her patronage, and it has been a role which she herself said she was very proud to have. I remember when she hosted us at Government House for PCA’s 21st Birthday and said ‘It is an honour to be your Patron and to have the opportuni es I do, to gain insights into your workings.
(read more on page 2)
I have seen your truly personal engagement with people who depend on you, your generosity of spirit and competence in offering quality of care, your ins nct of responsibility for others; the honesty and sensi vity that echoes through your love and friendship, compassion and humility.’
Her Excellency’s term ends in March. She will be succeeded by General Peter Cosgrove and I would like to congratulate General Cosgrove on his appointment to the role of Governor‐General.
Whilst I was in Canberra I also visited the PCA team to conduct a strategic planning session. PCA is reviewing its Strategic Plan at the moment and it was fantas c to spend some me with PCA staff discussing ideas about how we can make the organisa on even stronger in the years ahead.
The PCA Board and Member Organisa ons will also be having a strategic planning sessions and we’ll keep you updated with our progress in future edi ons of the ebulle n. Professor Patsy Yates President
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
PCA e‐bulle n February 2014
Why not join us and make a pledge of your own? We’ll be using the hashtag #LetsChatAboutDying to promote our pledge so please join us on social media.
You can register your pledge and get more
informa on at: www.changeday.com.au.
Policy update Be er pallia ve care for people with demen a Parliamentary Event Pallia ve Care Australia and Alzheimer’s Australia joined forces in February to promote the need for be er pallia ve care for people with demen a. In an event at Parliament House, Canberra, the Parliamentary Friends of End of Life Care and Parliamentary Friends of Demen a Groups joined aged care industry stakeholders to hear about the results of the End of Life Care for People with Demen a survey. The survey, supported by the Bupa Health Founda on, revealed that a significant number of consumers struggle to get access to appropriate end of life care. The survey revealed: 58 per cent of people with demen a lack
access to pallia ve care specialists 68 per cent of people with demen a lack
access to hospice care 49 per cent of people with demen a lack
support in the community 22 per cent of former carers thought that pain
was not well managed at the end of life for the person with demen a.
41 per cent of care professionals hadn’t received training on the assessment of pain for people who had demen a.
The take home message from the survey is the need for greater educa on and awareness for health professionals and consumers around advance care planning and pallia ve care. Professor Rod MacLeod, Senior Staff Specialist in Pallia ve Care at HammondCare was one of the keynote speakers at the event and said all health professionals should be able to provide some level of pallia ve care.
Pledge An online pledge is a way of le ng everyone know the one thing you are going to do differently on the March 6. Making a pledge is absolutely free. All you need to do is make up your mind to do something that will have a posi ve impact on someone’s health and wellbeing. Change can begin with a very simple idea. One innova ve sugges on can lead to a new way of thinking which could transform the way we work. The idea of Change Day is create a mass movement of people working inside and outside of health and aged care services and the community all joining together to demonstrate the difference we can make when we do something be er together. Ideas PCA has pledged as an organisa on to encourage people to have a chat about death, dying, pallia ve care and end of life issues. By doing this we hope to: Improve awareness about pallia ve care Improve comfort around discussing death and
dying Encourage people to share their wishes for end
of life care Improve end of life care through having the
conversa on. Why not join us? Here are some pallia ve care pledge ideas and ac ons to get you started: Complete an advance care plan Talk to your loved ones about your wishes for
end of life, and ask them about theirs Hold or par cipate in a death café Wear a ‘pallia ve care everyone’s business’
badge for the day Volunteer at, or visit, your local pallia ve care
service.
Ideas from our NSAP team to pallia ve care services: Book a Peer Mentor Visit to inspire your
Service to implement your quality improvement ac on plan
Sign up for your next NSAP cycle Commence your self assessment snapshot or
be er s ll, press the SUBMIT bu on!
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
‘In our delivery of healthcare, every professional should be able to provide a level of pallia ve care. It’s been described as generalist pallia ve care or primary pallia ve care, but it’s an approach to pallia ve care that every nurse and every doctor should understand, but clearly they don’t,’ said Professor MacLeod.
(Above) Ms Ita Bu rose addresses the audience President of Alzheimer’s Australia, Ms Ita Bu rose says that she was surprised by the outcomes of the survey. ‘The survey results provide a clear indica on of why the end of life wishes of many people with demen a are not carried through.’ ‘Carers o en tell us of the difficul es they have in ge ng access to pallia ve care services and hospices but this survey also has told us that many health professionals are not aware of the difficul es consumers face, ’ Ms Bu rose said. President of Pallia ve Care Australia, Professor Patsy Yates agreed and said that the survey calls for improved educa on at every level. ‘Health professionals should have pallia ve care as a mandatory component of their educa on and training across the span of their careers, and we need to educate the community about the types of services available. Discussing, planning and documen ng our preferences for end of life care is the best way to ensure our wishes will be followed at end of life,’ she said. In his speech, Minister for Social Services the Hon. Kevin Andrews MP recognised the importance of pallia ve care and said that demen a is an issue that is likely to get worse before it gets be er.
‘Death and bereavement are inevitability deeply personal experiences. Yet proper pallia ve care can help lighten that dreadful load,’ said the Minister. ‘Pallia ve care can help those ease the way through life’s final journey, as well as provide support to those le behind. This is a unique form of healthcare that must be ghtly integrated into our medical system at every level, every region and every ins tu on.’ As well as releasing the survey results, Alzheimer’s Australia in partnership with Pallia ve Care Australia and other aged care agencies launched Start2Talk, a consumer focused website to encourage consumers to engage in the conversa on about end of life. The website provides informa on and prac cal worksheets that consumers can complete that covers planning ahead for future financial, lifestyle and healthcare decisions. To visit the Start2Talk website, click here. To read the survey findings, click here. More informa on is available on ehospice. Closing the Gap Each year, the Australian Government takes stock on the commitment made in 2008 to close the life expectancy gap between Indigenous and non‐Indigenous Australians within a genera on. On average, Aboriginal and Torres Strait Islander peoples live 10‐17 years less than other Australians. In the sixth Closing the Gap Progress Report, Prime Minister Mr Tony Abbo said that the major challenge is to turn good inten ons into be er outcomes, and that he would be incredibly disappointed if in three or four years the government hadn’t con nued to make further advancements in this field.
Key elements in the Prime Minister Report 2014 include:
The target to halve the gap in Aboriginal and Torres Strait Islander child mortality is on track to be met within the meline
There is need for accelerated improvement if the gap on Indigenous life expectancy is to be shortened
No progress has been made against the target to halve the employment gap within a decade.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Pallia ve Care Australia is a member of the Close the Gap Steering commi ee and believes that policies to address Indigenous Health gaps should also include improving the quality of care at the end of life for Indigenous Australians.
'We really need to have a pallia ve care workforce strategy which addresses culturally sensi ve pallia ve care and trains Aboriginal Health workers in this crucial area,' said Dr Yvonne Luxford, PCA’s Chief Execu ve Officer. 'We also need a communica on strategy which educates Indigenous communi es about the benefits of pallia ve care and encourages them to access services.'
To read the Close the Gap Steering Commi ee report, click here.
To read the Prime Minister’s Report, click here.
Na onal Close the Gap Day takes place on 20 March 2014. To find out more informa on, register your own event or download promo onal resources, please visit the Oxfam website.
World Cancer Day Debunking the Myths February 4 was World Cancer Day and had the theme 'Debunking the Myths'. PCA used the occasion to call for more community awareness and educa on to improve knowledge and challenge some of the misconcep ons held about cancer and pallia ve care. ‘We need to get be er at talking about death, dying and terminal illness,’ said Dr Yvonne Luxford, PCA’s Chief Execu ve Officer.
‘Our reluctance to have these discussions is a real barrier to accessing health and pallia ve care services.’
‘One of the myths I want to see us tackle on World Cancer Day is the idea that talking about dying gets you there quicker. This is just not true, in fact talking about dying it gets you there be er.’
Cancer accounts for approximately 30% of deaths in Australia. According to the latest interna onal figures released in the Global Atlas of Pallia ve Care at the End of Life the Western Pacific region has the highest percentage of adults (41.5%) and children (14%) in need of pallia ve care for a cancer diagnosis, globally.
‘That is a lot of people who would benefit from access to pallia ve care services,’ said Dr Luxford. ‘It is vital that oncologists, and all health professionals, have mandatory educa on in pallia ve care throughout the course of their careers.’
Pallia ve Care Australia assisted with the review of the Cancer Council’s Pallia ve Care and Living with Advanced Cancer booklets. These are both available to order by calling 13 11 20 or downloading online via the Cancer Council Website.
Our Health Project Taylor’s Story PCA has worked with the Consumers Health Forum on the OurHealth Project. The project seeks to discover and share the stories of healthcare consumers and use this informa on to improve healthcare in Australia.
Taylor’s story is about her brother Mitchell who died from Niemann‐Pick Disease Type C. In the video she explains and how she came to terms with accep ng his death, and the support both she and Mitchell received from the pallia ve care team. To view the video, click here.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
News Australia
Australian Commission on Safety and Quality in Health Care Consulta on on the Dra Na onal Consensus Statement on End‐of‐Life Care in Acute Hospitals As part of its work on improving the safety and quality of end‐of‐life care in acute hospitals, the Commission has developed the Dra Na onal Consensus Statement: Essen al Elements for Safe and High‐Quality End‐of‐Life Care in Acute Hospitals (the Consensus Statement).
The dra Consensus Statement aims to provide guidance for health services to develop their own systems for delivering safe, mely and high quality end‐of‐life care in a way that is tailored to their popula on, resources and available personnel, whilst being in line with relevant jurisdic onal or other programs.
The Commission is holding an open consulta on process from January 31 – March 31 2014. The Commission is accep ng wri en submissions on the dra Consensus Statement and is conduc ng a series of workshops in each of Australia’s capital ci es during the consulta on period.
Interested par es are invited to provide feedback through comple ng a brief survey or by making a detailed wri en submission. If you are interested in a ending a consulta on workshop, please email an expression of interest to: [email protected]. You can also provide feedback on the dra Consensus Statement in this online survey, or submit wri en feedback, referring to the submissions process guidelines. The results of this consulta on process will be used to further refine the dra Consensus Statement and to guide the Commission’s next phase of work. A consulta on report will be made available on the Commission’s website when the consulta on process is closed and the submissions have been analysed. Any ques ons should be directed via email to [email protected] or by calling the Commission on (02) 9126 3600. Download the dra Consensus Statement here.
Donate Life Week Have the chat DonateLife Week is Australia's na onal awareness week to promote organ and ssue dona on and took place from Sunday 23 February to Sunday 2 March.
This year’s theme was ‘Have the chat that saves lives’ and aimed to encourage all Australians to speak with their loved ones about their decision to become an organ and ssue donor.
Around 1,500 people are on Australian organ transplant wai ng lists at any one me. Very few people – less than 1 per cent – will die in hospital in the specific circumstances where organ dona on is possible. Many more have the opportunity to donate ssue.
Family confirma on is always required for a dona on to take place therefore to op mise every poten al organ and ssue donor, every Australian family needs to ask and know their loved ones’ dona on decisions.
Although three in four Australians have discussed the subject with family members, only 53% of people know their loved ones’ dona on decisions. Importantly, 96% of those who do know their loved ones’ dona on decision say they would uphold their decision.
For more informa on about DonateLife week visit the campaign website. ehospice Australia took part in the annual Gi of Life Walk in Canberra (below), to read this story visit the ehospice website.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
New South Wales Model for Pallia ve and End of Life Care Service Provision The NSW Agency for Clinical Innova on’s Pallia ve Care Network has released the Diagnos c Report to Inform the Model for Pallia ve and End of Life Care Service Provision.
The report is the result of extensive consulta ons
with pa ents, their carers and families, specialist
pallia ve care providers, primary, aged and acute
care providers, other medical specialists and range of
other key stakeholders in NSW. It presents a detailed list of findings into 12 key learnings that will directly inform ongoing consulta on and the development of a Model for Pallia ve and End of Life Care Service Provision. The vision for the Model is to ensure that all NSW residents have access to quality care based on assessed need as they approach and reach the end of their life. The report is available from the ACI website.
Interna onal India Amendments to the Narco c Drugs and Psychotropic Substances Act The Indian Parliament has passed amendments to the Narco c Drugs and Psychotropic Substances Act that will improve access to essen al pain medica on for pa ents. Dr. Priyadarshini Kulkarni from the Indian Associa on of Pallia ve Care said: ‘Access and availability to the right pain relief medica ons for severe pain was glaringly absent in our health care systems. The NDPS Amendment Bill 2011…is going to truly transform the quality of life of millions in our country, who are in needless pain.’ For details of the bill, please follow this link or read more on ehospice.
Interna onal Children’s Pallia ve Care Network (ICPCN) Mumbai Declara on Following the inaugural ICPCN Conference held in Mumbai, India in February, the ICPCN issued a declara on on euthanasia, linked to the Belgian government's decision to pass legisla on that will allow euthanasia for children below the age of 16. The declara on calls for all children with life limi ng condi ons to have access to appropriate pain and symptom control and to high quality pallia ve care to meet their par cular needs. The text of the declara on is as follows: We believe that all children (neonates, children and young people) have the right to the best quality of life. When they have life limi ng condi ons they have the right to high quality pallia ve care to meet their needs. We believe that euthanasia is not part of children’s pallia ve care and is not an alterna ve to pallia ve care. It is impera ve that we work together to improve access to children’s pallia ve care around the world, including ensuring access to appropriate pain and symptom control. We call on all governments to transform children’s lives through the development of children’s pallia ve care, and in par cular we urge the Belgian government to reconsider their recent decision to allow euthanasia of children. This includes: Access to children’s pallia ve care within the
children’s health care system Access to appropriate pain and symptom
management (including medica ons) for all children
Suppor ng children and their families to be able to live their lives to the best of their ability for as long as possible.
Joan Marston, CEO of the ICPCN said about the declara on, ‘Euthanasia is not and has never been a part of pallia ve care. We believe the answer to a child’s suffering is more and be er pallia ve care services and not the ending of a child’s life.’
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Council of Europe, Commi ee of Ministers Recommenda on on the promo on of human rights of older persons The Commi ee of Ministers of the Council of Europe has adopted a recommenda on to governments aimed at ensuring that older persons fully enjoy all human rights and fundamental freedoms guaranteed in the European Conven on on Human Rights. The recommenda on sets out a number of principles to be followed and gives examples of good prac ces that can help governments adopt appropriate measures promo ng respect and dignity for older people. The recommenda on make specific references to pallia ve care: 44. Member States should offer pallia ve care to older persons who suffer from a life‐ threatening illness or an illness limi ng their life expectancy, to ensure their well‐being and allow them to live and die with dignity. 45. Any older person who is in need of pallia ve care should be en tled to access it without undue delay, in a se ng which is consistent with his or her needs and preferences, including at home and in long‐term care se ngs. 46. Family members and friends should be encouraged to accompany older persons who are terminally ill or dying. They should receive professional support, for example by ambulatory pallia ve‐care services. 47. Health care providers involved in pallia ve care should fully respect pa ents’ rights, and comply with professional obliga ons and standards. 48. Trained specialists in the field of pallia ve care should be available to lead educa on and research in the field. Programmes of pallia ve care educa on should be incorporated into the training of all health and social care workers concerned, and co‐opera on between professionals in pallia ve care should be encouraged. 49. Member States should ensure the adequate availability and accessibility of pallia ve care medicines. 50. In the organisa on of their na onal pallia ve care
systems, member States should take into account Commi ee of Ministers Recommenda on Rec(2003)24 to member States on the organisa on of pallia ve care. The full recommenda on is available here.
In the media A sample of pallia ve care stories making the headlines this month: In this ar cle from MJA Insight Associate Professor Will Cairns, director of the Townsville Pallia ve Care Service says that we need reconsider the values and goals of modern healthcare and work out how to accept the normality of death within the prac ce of modern medicine. To read the full ar cle click here. Looking for the way to go This ar cle from The Age looks at the difference between doctors and their pa ents when it comes to end of life care decision making. An interes ng read, click here. Against the odds: A moving story about life and loss, care and community from the Croakey Blog. David Marsh writes about his son Ma hew’s life and death, of the impact of grief, and what good care can mean – from a heart surgeon, family and friends, the community, and of land. Click here.
ehospice Do you want to keep up to date with all of the latest news from the pallia ve care sector here, and interna onally whenever and wherever you need it? Look no further than ehospice – the leading global website and app for pallia ve care news, views and inspira on. Here’s a pick of the news headlines from February: The TGA reschedules Alprazolam to Schedule 8 South Australia pallia ve care elec on
priori es An in depth interview with Dr Sonia Fullerton,
Pallia ve Medicine Consultant at the Peter McCallum Cancer Centre
Official opening of the Michael J Cousins Pain Management and Research Centre
Sacred Heart farewells feline companions Dex and Morph
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Each month on ehospice, in addi on to the latest news, we run a series of ar cles dedicated to a par cular topic. February was Grief and Bereavement month and featured the following ar cles: Thinking outside the box: colour coding coffins DIY funerals: from the bed to the grave Grief comes in all shades Coming to terms with grief What happens to your online iden ty when you
die? How do you tell someone they’re going to die? In March we’ll be focussing on the business side of pallia ve care – looking at all the tools you need to run a pallia ve care services from governance and financial management thorough to organisa onal branding and how to run events. April will focus on consumers so we’re looking for people to share their pallia ve care stories. Get in touch with our editor, Ross Murray on 02 6163 8404 or ross@pallia vecare.org.au with your pallia ve care news.
Na onal Pallia ve Care Week 2014
Pallia ve care everyone’s business – let’s work together
Na onal Pallia ve Care Week takes place from Sunday 26 May – Saturday 31 May 2014 and has the theme ‘Pallia ve care everyone’s business – let’s work together.’ This year Na onal Pallia ve Care Week will have a workforce focus as we explore all of the different roles in pallia ve care, from doctors, nurses and allied health professionals, through to volunteers, pa ents, families and carers. Pallia ve care is everyone’s business and we all have a role to play. Quality care at the end of life is realised when we all work together. Resources and Merchandise We will soon be opening our online ordering system to accept orders for Na onal Pallia ve Care Week. The order form will be up in early April so please check the website. We will also be sending you a separate email update once the system is up and running.
This year we have pens, confec onery ns and posters available, as well as all of our consumer brochures. Events SAVE THE DATE! PCA will be hos ng a parliamentary breakfast and all day educa on forum at Parliament House, Canberra on Thursday 29 May. Back by popular demand…We will also be webcas ng the event so if you can’t a end in person then you will be able to join us from the comfort of your own computer live, or access recordings of the presenta ons a er the event. We will shortly be releasing details about how you can register to a end the event and the webcast. We’ll also be pu ng together a list of events happening across the country so please remember to keep us up to date with events you may have organised so we can help promote them for you. Send your events to Jessica@pallia vecare.org.au . Are you the ‘face’ of pallia ve care? Get involved in Na onal Pallia ve Care Week 2014 As this year’s theme is all about the pallia ve care workforce, we’re looking for people in the sector to volunteer to be part of our campaign. We want to hear from as many people as possible, from a variety of different pallia ve care roles and from all over the country to make up our ‘face of pallia ve care’ poster campaign. Maybe you’re a volunteer at your local service, perhaps you’re a pallia ve care nurse in a rural area, or you could be a family carer, a social worker, art therapist or pallia ve care doctor. To volunteer, you’ll need to be happy to submit a photo of yourself for us to use on our campaign materials, share a few paragraphs about your area of work and be able to complete this during March. If you would like to volunteer, or for more informa on, please contact Claire Maskell Gibson ‐ claire@pallia vecare.org.au or 02 9239 2906.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Pallia ve Care Victoria Advancing innova on and collabora on ‐ PCV Conference The premier networking and professional development event for pallia ve care in Victoria is just around the corner. The 9th Biennial Pallia ve Care Victoria’s Conference will be held on 31 July – 1 August 2014 with the theme Living, Dying and Grieving Well. The conference is a great opportunity to come together to learn, network and be inspired. It brings together more than 300 professionals from the pallia ve sector and related healthcare fields. By popular demand, Julie McCrossin will be back this year as our dynamic conference facilitator. Call for abstracts is now open and is an exci ng opportunity for people to share stories of lessons learned, innova ve projects and prac ces and contribute to improving prac ce across the sector For more informa on about the conference and how to submit an abstract, visit www.pallcarevic.asn.au/conference or call Pallia ve Care Victoria on 03 9662 9644.
New bilingual handouts available in 6 languages
As part of the Culturally Responsive Pallia ve Care
Project, five bilingual handouts about pallia ve care
have been developed for the following culturally and
linguis cally diverse communi es: Chinese
(Cantonese and Mandarin versions), Italian, Maltese,
Turkish and Vietnamese.
These handouts outline the benefits of pallia ve care
and address community concerns. They were
developed in partnership with community reference
groups and are wri en in easy English for a low level
of literacy.
You can view the handouts in PCV library here or to
order printed copies, please contact Michelle
Paterson on 9662 9644 or email
Tasmanian Associa on for Hospice and Pallia ve Care (TAHPC) Right at home with the art of dying Rosemary Sandford is president of TAHPC and a hospice volunteer. In this ar cle she shares her vision for dying at home. LITERATURE and memoir are full of stories about place. Places for families, places for entertainment and sport, places with significant environmental and community values, and places for belonging — a sense of place. We all long to belong to somewhere. But no one, it seems, talks about places for dying — except perhaps the dying and their families. For the dying and those who live with them and care for them, a place to die is more than just about bricks and mortar and the nature and quality of medical and nursing care.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
PCA member organisa on updates Palliative Care Australia’s membership comprises the eight state and territory palliative care organisations and the Australian and New Zealand Society of Palliative Medicine. These organisations created and share the vision, mission and aims of Palliative Care Australia and operate through a federated governance structure.
It is about the whole experience of dying with dignity and integrity, and encompasses all that has been part a person’s life — anger, regret, sadness, humour, football, cricket, Facebook, skateboards, dogs, ca le, sailing, fishing, and the mul tude of life experiences and emo ons that make up the human fabric of living and dying. The person who is dying is also living, right up un l their very last breath. Dying well, it seems, is as much an art as it is a (medical) science. I want to die on my wide, front veranda, in my home among the gum trees with its view of the Derwent, and listening to birdsong. They say that hearing is our last sense to go, and for me as a lover of nature and birds, I wish to hear birdsong and the daily sounds of my neighbourhood, not the sounds of a hospital ward and ambulance sirens. I have the perfect spot for dying (all going well). It is a rickety old cane couch from my parents’ front veranda in Queensland, one of my most cherished possessions, and it is on this couch that my mother held me for the first me a er she came home from the Brisbane Women’s Hospital following my birth — a rather complicated affair. Now held together in places with pink baling twine, its aged horsehair and flock ma ress and threadbare cushions are chock full of memories of a happy vagabond childhood of homemade shorts, brown bare feet, a Malvern Star bicycle, my border collie Lassie, dri wood ra s on the Brisbane River, and s cky mangrove mud caking our feet as my exasperated mother would call out to my sister and me: “Get those feet off the couch!’’ With memories like these, what’s not to like about dying on my couch! Yes, I know the clinical experts will shake their heads condescendingly and say, “Most people don’t die like this, nor do they have those choices’’ — their subtext being neither will I. And yes, I must complete my Advance Care Direc ve, which sets out my wishes and instruc ons on how and where I want to die at home with no heroic
resuscita on by ambulance or anyone else, nor intuba on, and only pain medica on if required to keep me comfortable. For me, dying is all about quality of life, about living un l death in the manner to which I have grown accustomed in a varied and full life. Now where exactly is my Advance Care Direc ve? Ah yes, here it is under the pile of accounts on the kitchen bench — rates, Aurora, Telstra, NBN and vet bills, interes ng cu ngs from the Mercury and the Brisbane Girls’ Grammar School newsle er. I really must get on with it … the minute a er I have answered that phone call, had that cup of coffee, and taken the dog to the vet. Back home from the vet’s, my thoughts turn to the art and science of dying. The science of dying is pre y well mastered by the expert pallia ve care available to most of us here in Tasmania, but to my mind there is a definite art to dying well and it is different for each of us. It is the choreography of our dying that is the hallmark of who we are and what we stand for — right up un l that last breath. For my part, I want to die at home among the gum trees on my parents’ old cane couch, the breeze on my face and birdsong in my ears. In some ways I rather look forward to that final trip in a Kombi van accompanied by a single malt whisky or two drunk by my long‐suffering friends.
*This is an excerpt of Rosemary’s ar cle, the full
version , which was first published in the Hobart
Mercury, is available online.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Sector News Na onal Lead Clinicians Group 2014 Awards for Excellence The Na onal Lead Clinicians Group 2014 Awards for Excellence are now open. The Awards aim to recognise and reward excellence in clinical leadership and collabora on. The theme for the 2014 Awards is: Excellence in Innova ve Implementa on of Clinical Prac ce The 2014 Award Categories are: Category 1 ‐ General Category 2 ‐ An microbial Resistance Category 3 ‐ Cultural Competence in Indigenous Care – (2 Streams) Winners in each of the award categories will receive $10,000 in recogni on of their work and the sharing of best prac ce, and up to twelve runners‐up will each receive $3,000. Cer ficates will also be provided to all Award finalists. Applica on informa on and applica on forms are available on the Na onal LCG website. To be eligible, all applica ons must be received by 5pm Eastern Daylight Time, 21 March 2014. Should you require further informa on, please contact the Na onal Lead Clinicians Group Secretariat via email at [email protected]. Interna onal Pallia ve Care Family‐Carer Research Collabora on Workshop The Interna onal Pallia ve Care Family‐Carer Research Collabora on (IPCFRC) is delighted to announce an upcoming workshop and mee ng prior to the 8th World Research Congress of the European Associa on for Pallia ve Care (EAPC) in Lleida, Spain. The details of the workshop and mee ng are as follows: Conduc ng Research with Family Caregivers: Methodological insights and strategies FACILITATOR: Professor Peter Hudson ‐ Centre for Pallia ve Care (St Vincent's Hospital and Collabora ve Centre of The University of Melbourne)
Na onal Standards Assessment Program Con nuous Quality Improvement Webinars NSAP is once again having a series of monthly CQI webinars in 2014. In response to requests from Services, the day and me has changed to Thursdays, 2–3pm. This year, the topics will focus on projects that Services have completed for specific Standards, as well as theore cal presenta ons. The schedule is available on the NSAP website: www.nsap.pallia vecare.org.au.
Workshops NSAP is also hos ng a number of workshops around the country in March. The Paediatric Pallia ve Care Workshop – Change Starts Here – will be held in Sydney on Wednesday 5 March. The Support for Carers Collabora ve Improvement Project LS3 Workshops will be held in Perth on Friday 7 March, Sydney Friday 14 March and Melbourne Monday 24 March, for the 36 par cipa ng Services. An NSAP Self Assessment Workshop will also be conducted in Sydney on Friday 28 March. For more informa on, including how to register, email nsapevents@pallia vecare.org.au.
Newsle er The Standard newsle er is our bi‐monthly na onal publica on for NSAP. The Jan/Feb edi on has just been published and features handy hints for comple ng the NSAP cycle, a reflec on on the Standards, as well as important NSAP training and educa on dates. Click here to read. If you have any ques ons please contact the NSAP team.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Featuring keynote presenta ons from: The Transi on from Chronic to Pallia ve Care: challenges and opportuni es Professor Patricia Davidson, Dean of Nursing, Johns Hopkins University, Bal more, Maryland, USA and Director, Centre for Cardiovascular and Chronic Care (CCCC), University of Technology Sydney, Australia. Giving Voice to Values: addressing ethical or moral dilemmas A/Professor Sandy Lynch, Director of Centre for Faith, Ethics and Society, University of Notre Dame Australia. In addi on to over 40 oral presenta ons there will be four workshop sessions at no addi onal charge. Workshops can be booked during registra on. Please note that places are limited ‐ book early to avoid disappointment. For details of all the plenary sessions and the exci ng range of presenta ons, download the conference program. For more informa on or to register visit www.pcna.org.au/conference
Educa on NATSIHWA Educa on Forums Revised Schedule The Na onal Aboriginal and Torres Strait Islander Health Worker Associa on (NATSIHWA) has released the dates of six networking and professional development forums. They include educa on on pallia ve care. The six Forums are specifically designed to benefit Aboriginal and Torres Strait Islander Health Workers/Prac oners and therefore registra ons can only be accepted from Aboriginal and Torres Strait Islander Health Workers/Prac oners who are Members of NATSIHWA. They are FREE to a end. Aboriginal and Torres Strait Islander Health Workers/Prac oners who are not current members and who would like to a end are encouraged to become members before registering for the event. Please contact our membership officer on [email protected] or visit NATSIHWA’s website to complete an online applica on form.
DATE: Wednesday, 4th June 2014 TIME: 13.30‐16.30 PRESENTATIONS AND SPEAKERS: Methodological challenges and strategies associated with rural family carer research Professor Kevin Brazil ‐ Professor of Pallia ve Care, School of Nursing and Midwifery, Queen’s University Belfast, UK. Enhancing capacity for rigorous family caregiver research: Development of the US Pallia ve Care Research Coopera ve Group Caregiver Research Core Dr Jean Kutner ‐ Professor of Medicine in the Division of General Internal Medicine, Department of Medicine, University of Colorado School of Medicine, USA. Evalua ng a Carer Support Needs Assessment Tool: Trail design and challenges Professor Gunn Grande ‐ Professor of Pallia ve Care, The School of Nursing, Midwifery and Social Work, The University of Manchester, UK and Dr Gail Ewing ‐ Senior Research Associate, Centre for Family Research, Cambridge University, UK. LOCATION:EAPC Conference (Lleida, Spain) – Mee ng room loca on to be advised. RSVP: Register for this event by the 23rd May 2014 by booking online at:h p://www.trybooking.com/EAAK
To download a copy of the flyer, click here.
Pallia ve Care Nurses Australia Conference Early bird registra on extended un l 10 March There’s just a few days le to take advantage of the early bird registra on rates for the PCNA Conference: 6 ‐7 April 2014 Sofitel Sydney Wentworth Building a bridge to the future: the wide span of pallia ve care nursing.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
The training provided will not be a clinical skills program but rather designed to familiarise par cipants with the Guidelines and supply them with the tools to translate these into their own se ng. There are two streams offered in the training program, one for volunteers and the other for professionals in the pallia ve care sector. Both will run for approximately half a day. Director of JustHealth Consultants Ms Terrie Paul says while the training workshops are only available in Tasmania, the COMPAC Guidelines online training package is available na onwide through the Pallia ve Care Online website which has been available for the past nine months. Workshops are scheduled in Hobart (4 March), Launceston (19 February and 26 March), Burnie (20 and 21 February and 7 March) and Latrobe (28 March), with more dates to follow throughout 2014. To sign up for the workshops, click here. Centre for Pallia ve Care ‘Hot Topics in pallia ve care’ forums The Centre for Pallia ve Care is delighted to present a new series of forums dedicated to the ‘Hot Topics’ in Pallia ve Care. Please join us at the first forum to discuss the first ‘Hot Topic’ of the year, Care at the end of life: Has the Liverpool Care Pathway lost its way?, presented by A/Prof Mark Boughey who recently a ended the Liverpool Care Pathway Reference Group Conference in late 2013. To register for this event please email your; Name, posi on, organisa on and telephone number to: [email protected] More informa on is available on the Centre for Pallia ve Care website.
The Forums are about professional networking and professional development opportuni es. The agenda will be developed around the following topics: Types of training and educa on that is available
in various health disciplines such as: Spirometry, Pallia ve Care, Chronic Disease etc.
Higher Educa on and career pathways within the Primary Health Care packages;
Registra on and Accredita on with APHRA and opportuni es as a Health Prac oner;
What is happening in the Aboriginal and Torres Strait Islander Health Workforce streams; and
Informa on on the Awards and Remunera ons rela ng to the health worker profession.
The revised Schedule is as follows:
Adelaide | 13 March 2014
Cairns | 2 April 2014
Melbourne | 10 April 2014
Darwin | 14 May 2014
Perth | 29 May 2014
Coffs Harbour | 12 June 2014
NATSIHWA look forward to receiving a high number of registra ons for all six Forums. For further informa on please contact NATSIHWA via email or phone 1800 200 800. New pallia ve care training program available for Tasmania Tasmanian health professionals and volunteers providing pallia ve care to older people in the community can look forward to receiving free training through a project jointly developed by the Australian Healthcare and Hospitals Associa on (AHHA), JustHealth Consultants and Silver Chain. Funded by the Australian Department of Health, the free workshops are designed to encourage uptake of the Guidelines for a Pallia ve Approach for Aged Care in the Community Se ng (the COMPAC Guidelines) for those who work or volunteer in pallia ve care in Tasmania.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Let’s talk about cancer New Consumer Engagement resources available Cancer Australia has released consumer engagement promo onal resources to encourage meaningful conversa ons between people affected by cancer and providers of cancer care. Evidence shows that working with people affected by cancer results in be er outcomes and improves the quality and safety of our health care organisa ons and research. These promo onal resources aim to foster discussion on how to engage consumers and strengthen consumer involvement by health professionals, managers and researchers. To access these resources please visit Cancer
Australia’s Consumer Involvement website.
Resources
Australian Pallia ve Medicine Research Review Issue 4 The latest edi on of the Australian Pallia ve Medicine Research Review is available online, featuring: Predictors of transi on to pallia ve care for
MCA stroke pa ents with dysphagia Pharmacovigilance in pallia ve care:
haloperidol for delirium Music based interven ons in pallia ve cancer
care Qualita ve study: COPD and pallia ve care Pallia ve care interven on for LT pa ents Treatment related symptoms among breast
cancer survivors Guidelines for pallia ve care in demen a Guidelines for pain management in older
people Fentanyl buccal tablet vs oxycodone for BTP Challenges of conduc ng research on cancer
pain classifica on. Australian Research Review produces over 40 regular, independent publica ons across a wide range of therapeu c areas. They are free for any Australian health professional to receive (delivered by email) and cover a variety of specialist areas and conference events. Each publica on provides subscribers with a short summary of key studies from the world’s most pres gious journals together with an opinion on why it ma ers to local prac ce from leading experts in each area.
You are welcome to subscribe to the reviews via this link: h p://www.researchreview.com.au.
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
Australian Pain Society Annual Scien fic Mee ng 13‐16 April 2014 Hobart, Tasmania W: h p://www.dcconferences.com.au/aps2014/
Australian Wound Management Associa on (AWMA) Na onal Conference Gold Coast Conven on & Exhibi on Centre, Qld 7 ‐ 10 May 2014 To register click here To view the conference program click here
7th World Congress World Ins tute of Pain Maastricht, The Netherlands 7‐10 May 2014 W: h p://www2.kenes.com/wip2014/Pages/Home.aspx
St Francis Hospice 13th Annual Kaleidoscope Interna onal Pallia ve Care Conference Dublin, Ireland 28‐29 May 2014 W: h p://www.s .ie/kaleidoscope
8th World Research Congress of the European Associa on for Pallia ve Care Lleida, Spain 5‐7 June 2014 w: h p://forskningsweb.org/research2014/
Interna onal Conference on Opioids Boston, MA, USA 8‐10 June 2014 W: h p://www.opioidconference.org/
10th Interna onal Conference on Grief and Bereavement in Contemporary Society Hong Kong 11‐14 June 2014 w: h p://www.socsc.hku.hk/icgb2014/
Cultural Diversity In Ageing Conference Melbourne Conven on Centre, VIC 12 ‐ 13 June 2014 For more informa on click here T: 03 8823 7979 E: [email protected]
Risky Business 2 Interna onal Demen a Conference Sydney, New South Wales 26‐27 June 2014 W: h p://www.demen aconference.com/
Conferences and events
10th Pallia ve Care Congress March 12‐14 2014 Southampton, England W: h p://www.pccongress.org.uk/index.php?pageid=1
4th Global Conference The Pa ent: Therapeu c Approaches Prague, Czech Republic 18—20 March 2014 W: h p://www.inter‐disciplinary.net/probing‐the‐boundaries/persons/the‐pa ent/call‐for‐papers/
PaCCSC 5th Annual Research Forum Sydney, Australia 19 ‐ 21 March 2014 To view a flyer click here To view the registra on form click here E: [email protected]
Barwon Health Pallia ve Care Conference RACF Resort, Torquay VIC 20 ‐ 21 March 2014 To register click here To view the conference program click here T: (03) 4215 5700 E: pallia [email protected]
Australian Grief & Bereavement Conference 2014 Bayview Eden Melbourne 24 ‐ 26 March 2014 W:h p://www.grief.org.au/conference
2nd Asian Congress on Pain Taipei, Taiwan 27‐30 March 2014 W: h p://aafps.org/
Pallia ve Care Nurses Australia Conference 2014 Sofitel Hotel, Sydney 6—7 April 2014 W: www.pcna.org.au The Second Pallia ve Care Conference Kuwait 3 ‐ 15 April 2014 For more informa on click here
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
20th Interna onal Congress on Pallia ve Care Montréal, Canada 9 – 12 September 2014 E: [email protected] W:www.pal2014.com
ACORD 2014 Coolum, Queensland September 14‐20 2014 W: h p://www.acord.org.au/downloads/ACORD%202014%20FLYER.pdf
Diversity Therapy Australia (DTA) Na onal Conference Grand Chifley, Adelaide September 18‐20 2014 For sponsorship details click here For trade exhibitor informa on click here 2014 Na onal Diversional Therapy Australia Conference Adelaide, South Australia 19‐20 September 2014 W: h p://www.diversionaltherapy.org.au/Events/tabid/59/Default.aspx
Centre for Ageing and Pastoral Studies Conference University House, ANU, Canberra 30 September—2 October 2014 For more informa on click here T: (02) 6272 6205 E: [email protected] Pallia ve Care NSW Conference Pallia ve and End of Life care: Making History 22—24 October 2014 W: h p://pallia vecarensw.org.au/site/
Pallia ve Care WA Conference Technology Park Func on Centre, Bentley 31 October 2014 W: h p://pallia vecarewa.asn.au/site/
Pallia ve Care Queensland Conference Fi y Shades of Pain 3—5 December 2014 W: h p://www.pallia vecareqld.org.au/ World Cancer Congress Melbourne Conven on and Exhibi on Centre 3—6 December 2014 W: h p://www.worldcancercongress.org/
6th edi on of the Singapore Pallia ve Conference Singapore Polytechnic Conven on Centre 26 – 29 June 2014 w: www.spcconference.com Cancer Nurses Society of Australia 17th Winter Congress Melbourne, Victoria July 24‐26 2014 W: h p://www.cnsawintercongress.com.au/
20th Interna onal AIDS Conference Melbourne Conven on and Exhibi on Centre 20—25 July 2014 W: h p://www.aids2014.org/
Pallia ve Care Victoria Conference Bayview Eden Hotel, Melbourne 31 July—1 August 2014 W: h p://www.pallcarevic.asn.au/
6th Interna onal Conference on Pa ent and Family Centred Care Vancouver, Canada 6‐8 August 2014 W: h p://www.cvent.com/events/the‐6th‐interna onal‐conference‐on‐pa ent‐and‐family‐centered‐care/event‐summary‐31f718a720e546c7a48870ac806d46f0.aspx?RefID=IPFCC
Centre for Pallia ve Care 2nd Australian Pallia ve Care Research Colloquium Melbourne 7– 8 August 2014 w: h p://centreforpallcare.org/index.php/events/australian_pallia ve_care_research_colloquium/ Registra on opens 14 March 2014.
Interna onal Conference on End of Life: Law, Ethics, Policy and Prac ce 2014 Brisbane 13‐15 August 2014 w: h p://icelconference2014.com/
The Australian and New Zealand Society of Pallia ve Medicine Surfers Paradise Marrio Resort and Spa, Gold Coast 2 – 5 September 2014 W: www.anzspm.org.au/anzspm2014
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au
NSW Pallia ve Care New South Wales PO Box 487 Strawberry Hills NSW 2012
t: +61 2 9206 2094 / 0403 669 491 f: +61 2 9281 0157 w: www.pallia vecarensw.org.au e: info@pallia vecarensw.org.au
QLD Pallia ve Care Queensland PO Box 13167 George Street QLD 4003
t: +61 7 3256 2486 / 1800 660 055 f: +61 7 3256 2671 w: www.pallia vecareqld.org.au e: enquiries@pallia vecareqld.org.au
VIC Pallia ve Care Victoria Suite 3C, Level 2, 182 Victoria Parade East Melbourne VIC 3002
t: +61 3 9662 9644 f: +61 3 9662 9722 w: www.pallcarevic.asn.au e: [email protected]
WA Pallia ve Care WA 15 Bedbrook Place Shenton Park WA 6008
t: +61 8 9382 9367 / 1300 551 704 f: 1300 551 704 w: www.pallia vecarewa.asn.au e: pcwainc@pallia vecareswa.asn.au
SA Pallia ve Care Council South Australia PO Box 435 Fullarton SA 5063
t: +61 8 8271 1643 f: +61 8 8271 7494 w: www.pallcare.asn.au e: [email protected]
TAS Tasmanian Associa on for Hospice and Pallia ve Care PO Box 834 Kingston TAS 7050
t: +61 3 6285 2514 f: +61 3 6239 6030 w: www.tas.pallia vecare.org.au e: [email protected]
ACT Pallia ve Care ACT PO Box 31 Campbell ACT 2612
t: +61 2 6273 9606 f: +61 2 6273 9590 w: www.pallcareact.org.au e: [email protected]
NT Pallia ve Care Northern Territory PO Box 4489 Alice Springs NT 0811
t: +61 8 8951 6762 w: www.nt.pallia vecare.org.au e: pcnt@pallia vecare.org.au
ANZSPM Australian and New Zealand Society of Pallia ve Medicine PO Box 7001 Watson ACT 2602
t: 0458 203 229 f: +61 3 8677 7619 w: www.anzspm.org.au e: execu [email protected]
Acknowledgement—Pallia ve Care Australia is a na onal pallia ve care project funded by the Australian Government Department of Health
Palliative Care Australia Inc. Level 1 | 21 Napier Close | Deakin ACT 2600 PO Box 24 | Deakin West | ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected]
Connect with Palliative Care Australia
Palliative Care Australia Inc. PO Box 24 Deakin West ACT 2600 t: +61 2 6232 4433 f: +61 2 6232 4434 e: [email protected] w: www.palliativecare.org.au