I Am Living

Advance Care Planning

USEFUL LINKS/ORGANISATIONS

ADVANCE CARE PLANNING AUSTRALIA

Call 1 300 208 582 or (03) 9496 5660

ACPA is a national program, managed by Austin Health,  which enables Australians to make their own choices for their future health and care. Amongst other key areas of advance care planning work, ACPA’s provides:

  • advice and support on advance care planning to consumers of care across Australia;
  • volunteering opportunities for people to support others with advance care planning; and
  • bespoke information for diverse communities and specific health settings.

According to ACPA advance care planning is a heartfelt conversation and a personal statement that goes beyond filling in a form. It’s a commitment to honour and respect an individual’s values, beliefs and choices. ACPA is working towards advance care planning discussions becoming a key part of routine healthcare conversations across Australia.

Australian national program funded by the Australian Government Department of Health, supporting carers in their role as a substitute decision-maker.

Free information and support are available via the national advance care planning support service 1 300 208 582.

 

AUSTRALIAN DEPARTMENT OF HEALTH

The Australian Department of Health provides consumers of care with significant information and a large number of online and printable resources about palliative care in general and advance care planning in particular. Some of the topics discussed are:

  • your palliative care wishes and expectations;
  • holding conversation with loved ones about palliative care;
  • advance care planning and directives; and
  • finding palliative care service providers

 

MY VALUES

MyValues is a set of specially constructed statements designed to help you identify, consider and communicate your wishes about the medical treatment you would want in the later stages of life. MyValues is a not-for-profit organisation which provides a free service. It is operated by Barwon Health and funded by The Victorian Department of Health.

According to MyValues, “as a result of serious illness, accident or simply as a result of decline at the end of life, you may reach a stage when you are incapable of making or communicating your choices concerning your health care and medical intervention. In this situation your doctor and family will have to make decisions for you and they will look for clear guidance from you. With MyValues you can create your own values profile. A profile that explains your values in relation to life, death and medical intervention. Understanding and respecting your values will help your doctors and your family to make better choices about your medical treatment. With this information, they can feel reassured that they are respecting your wishes. MyValues can help sort out and clarify some very emotive issues that can be difficult to discuss, even with your closest family members – all in a very simple and objective way. MyValues helps you consider important questions and choices that may not have occurred to you. Finally, MyValues analyses your responses to find consistent themes, creating a report of the values that are important to you. This report can then be shared with your family and doctors.”

 

PALLIATIVE CARE AUSTRALIA, ADVANCE CARE PLANNING
Call (02) 6232 0700 or Online Contact Form

Palliative Care Australia (PCA) is the national peak body for palliative care. PCA has representation in all Australian states and territories. It was launched in 1998, developing from the Australian Association for Hospice and Palliative Care Inc which started in 1991.

PCA believes high quality palliative care should be available and accessible to people living with a life-limiting illness when and where they need it.

Palliative Care Australia provides individuals, carers and loved ones with information on Advance Care Planning in Australia, including:

  • benefits of Advance Care Planning;
  • practical and simple three-step process to plan for advance care;
  • state-specific advance care planning; and
  • end-of-life law in Australia.

FILMS / TV SERIES / VIDEOS

INDIGENOUS ADVANCE CARE PLANS VIDEO

On the remote Aboriginal and Torres Strait Islander community of Groote Eylandt, Northern Territory, local Health Centre professionals have had success by working respectfully with the local Anindilyakwa people, empowering them to express their end-of-life wishes by outlining the various aspects of an Advance Care Plan in a culturally safe and responsive way. With the endorsement of Elders, many community members have completed an individual Advanced Care Plan.

Filmed on Groote Eylandt, the Discussing Choices – Indigenous Advance Care Plans – A Learning Resource video (approximately 26 minutes) documents this success and acts as a culturally safe and practical case study for professional health, Aboriginal and community workers on ‘how to’ support and complete Advance Care Plans for end-of-life care in Indigenous communities. It also outlines the importance and benefits of an Advance Care Plan for Aboriginal and Torres Strait Islander People, such as the importance of kinship, country, passing on culture to future generations and keeping families strong.

Jonathan Dodson-Jauncey, as the Palliative Care Northern Territory (PCNT) President, guides viewers through the video, outlining the importance and benefits of an Advance Care Plan for Aboriginal and Torres Strait Islander People.

Cancer and Palliative Care

USEFUL LINKS/ORGANISATIONS

CANCER COUNCIL
Call 13 11 20

Cancer Council is the only charity that works across every area of cancer, from research to prevention and support. Cancer Council has representation in every Australian state and territory.

They assist Australians affected by cancer and support people when they need it most, speak out on behalf of the community on cancer issues, empower people to reduce their cancer risk, and find new ways to better detect and treat cancer.

Death and Dying

BOOKS FOR ADULTS

  • Advise For Future Corpses*. A Practical Perspective on Death and Dying. Tisdale, S. Allen & Unwin (2018).
  • A Matter of Life and Death. Sixty Voices Share their Wisdom. Bradley, R.
  • Being Mortal. Medicine and What Matters in The End. Gawande, A. Picador (2014) USA.
  • Death. The Final Stage of Growth. Kubler-Ross, E.
  • Dying to Know. Bringing Death to Life *And Those Who Love Them. Anastasios, A. Pilolight Australia (2007)
  • Let’s Talk about Death (over Dinner): An Inivitation and Guide to Life’s Most Important Conversation. Michael Hebb (2018)
  • Life Lessons. Two Experts on Death and Dying Teach Us About the Mysteries of Life and Living. Kubler-Ross, E. and Kessler, D.
  • On Death and Dying. Kubler-Ross, E. What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families.
  • Reflections of a Setting Sun, Michael Barbato
  • Standing on the Platform. Stories and Reflections from Palliative Care. Bennan, F.
  • The Denial of Death. Becker, E. Souvenir Press (2020) UK.
  • The Five Invitations. Discovering What Death Can Teach Us About Living Fully. Ostaseski, F. Flatiron Books (2017) USA
  • The Intimacy of Death and Dying. Simple Guidance to Help You Through. Leimbach, C., McShane, T. and Virago, Z. Allen & Unwin (2009) Australia.
  • The Tibetan Book of Living and Dying. Sogyal Rinpoche. Harper Collins (2002). USA
  • The Wheel of Life: A Memoir of Living and Dying. Kubler-Ross, E.
  • The Wisdom of Dying. Practices for Living. Murphy, N. M. M.D. Element Books Limited (1999). UK
  • With The End In Mind. How to Live and Die Well. Mannix, K. William Collins (2017). UK

 


EVENTS

DEATH OVER DINNER (DOD)

The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity. It offers an environment that is more suitable to discuss end of life.

Death Over Dinner was originally designed in the U.S. by Michael Hebb and Angel Grant to encourage people to have conversations about end of life and End of Life Care at the kitchen table rather than in the Intensive Care Unit (ICU), when it’s too late.

DOD is an interactive website that encourages conversation to start with family and friends while breaking bread, and well in advance of an accident or an emergency when people are overwhelmed or unable to communicate.

DOD gives people the permission to discuss their choices and thoughts on end of life and End of Life Care.  It educates people on the value of making decisions about their wishes, and expressing them to their loved ones, by inspiring a series of uplifting and interactive dinners to transform the seemingly difficult conversation about death into an intimate, shared experience.

DOD provides a range of tools, reading and support materials, as well as tips to get the conversation started. Dinner party hosts choose the guests and the menu and let the wine and conversations flow.

Australians were inspired by DOD’s well executed idea and how it works to bring people to the table to create social change. These dinners result in connection and action. They create deep engagement and profound relationships. Whilst Australia is the first official satellite site outside the USA, DOD has already become an international movement. In two years, more than 100,000 people in over 30 countries have gathered to dine and discuss their views on a “good” death, and the issues that matter to them.

You can watch the DOD video here https://deathoverdinner.org.au/#intro-video or watch Michael Hebb’s TEDMED talk to see how this movement was inspired and how death came to dinner.

 

DYING TO KNOW DAY – AUGUST 2022?
The Groundswell Project Australia

Dying to Know Day is an annual campaign in Australia that encourages people to start conversations about death. During August, people hold events, gatherings at home, take individual action, and much more, all to improve their knowledge around choice at end of life. The campaign provides guides and toolkits to support people to have conversations about death and dying with their loved ones.

 

EMBRACING LIFE – SCHOOL HEALTH PROMOTION PROGRAM
Calvary Bethlehem

Calvary Health Care Bethlehem (CHCB), as a health service providing specialist palliative care, works to support community capacity & resilience in dealing with life-limiting illness, death, dying and bereavement. In support of this work, CHCB launched the palliative care video documentary “Embracing Life” to encourage conversations about death and dying with students and community groups. The video follows the experience of a group of students from Sacred Heart Girl’s College in Oakleigh (Victoria) who spent time at the hospital with patients, staff and volunteers. The documentary examines how the project changed the student’s views of palliative care, giving them a greater appreciation of life, and increasing their confidence to have conversations about death.

 

LET’S TALK ABOUT DEATH OVER ZOOM
Date: Tuesday 12 May 2022, 3pm to 4.30pm
Watch the video invitation
Enquiries to Linda Shaw, Calvary Health Care Bethlehem

This is a Zoom discussion event about illness, dying, grief and living well, guided by the team at Calvary Health Care Bethlehem (CHCB).The event is free of charge. Post-event, attending participants will receive a kit containing a copy Michael Hebb’s book “Let’s Talk about Death (over Dinner): An Invitation and Guide to Life’s Most Important Conversation”, a $20 voucher to support your Death over Dinner party as well as some educational resources. Entry is limited. For more information, visit the website or watch the event video invitation.

End-of-life care

USEFUL LINKS/ORGANISATIONS

CANCER COUNCIL AUSTRALIA
Call 13 11 20

Cancer Council is the only charity that works across every area of cancer, from research to prevention and support. Cancer Council has representation in every Australian state and territory.

They assist Australians affected by cancer and support people when they need it most, speak out on behalf of the community on cancer issues, empower people to reduce their cancer risk, and find new ways to better detect and treat cancer.

 

PALLIATIVE CARE AUSTRALIA, ADVANCE CARE PLANNING
Call (02) 6232 0700 or Online Contact Form

Palliative Care Australia (PCA) is the national peak body for palliative care. PCA has representation in all Australian states and territories. It was launched in 1998, developing from the Australian Association for Hospice and Palliative Care Inc which started in 1991.

PCA believes high quality palliative care should be available and accessible to people living with a life-limiting illness when and where they need it.

Palliative Care Australia provides individuals, carers and loved ones with information on Advance Care Planning in Australia, including:

  • benefits of Advance Care Planning;
  • practical and simple three-step process to plan for advance care;
  • state-specific advance care planning; and
  • end-of-life law in Australia.

BOOKS FOR ADULTS

Reflections of a Setting Sun, Michael Barbato

EVENTS

DEATH OVER DINNER

The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity. It offers an environment that is more suitable to discuss end of life.

Death Over Dinner was originally designed in the U.S. by Michael Hebb and Angel Grant to encourage people to have conversations about end of life and End of Life Care at the kitchen table rather than in the Intensive Care Unit (ICU), when it’s too late.

DOD is an interactive website that encourages conversation to start with family and friends while breaking bread, and well in advance of an accident or an emergency when people are overwhelmed or unable to communicate.

DOD gives people the permission to discuss their choices and thoughts on end of life and End of Life Care.  It educates people on the value of making decisions about their wishes, and expressing them to their loved ones, by inspiring a series of uplifting and interactive dinners to transform the seemingly difficult conversation about death into an intimate, shared experience.

DOD provides a range of tools, reading and support materials, as well as tips to get the conversation started. Dinner party hosts choose the guests and the menu and let the wine and conversations flow.

Australians were inspired by DOD’s well executed idea and how it works to bring people to the table to create social change. These dinners result in connection and action. They create deep engagement and profound relationships. Whilst Australia is the first official satellite site outside the USA, DOD has already become an international movement. In two years, more than 100,000 people in over 30 countries have gathered to dine and discuss their views on a “good” death, and the issues that matter to them.

You can watch the DOD video here https://deathoverdinner.org.au/#intro-video or watch Michael Hebb’s TEDMED talk to see how this movement was inspired and how death came to dinner.

 

DYING TO KNOW DAY – AUGUST 2022?
The Groundswell Project Australia

Dying to Know Day is an annual campaign in Australia that encourages people to start conversations about death. During August, people hold events, gatherings at home, take individual action, and much more, all to improve their knowledge around choice at end of life. The campaign provides guides and toolkits to support people to have conversations about death and dying with their loved ones.

 

EMBRACING LIFE – SCHOOL HEALTH PROMOTION PROGRAM
Calvary Bethlehem

Calvary Health Care Bethlehem (CHCB), as a health service providing specialist palliative care, works to support community capacity & resilience in dealing with life-limiting illness, death, dying and bereavement. In support of this work, CHCB launched the palliative care video documentary “Embracing Life” to encourage conversations about death and dying with students and community groups. The video follows the experience of a group of students from Sacred Heart Girl’s College in Oakleigh (Victoria) who spent time at the hospital with patients, staff and volunteers. The documentary examines how the project changed the student’s views of palliative care, giving them a greater appreciation of life, and increasing their confidence to have conversations about death.


PAPERS

AUSTRALIA’S HEALTH 2016 REPORT

In 2016, the Australian Institute of Health and Welfare published ‘Australia’s health 2016’ as part of the Australia’s health series (Report No. 15. Cat. No. AUS 199. Canberra: AIHW). Amongst other topics, the report discusses key aspects of end-of-life care such as patient-centred care, end-of-life care planning matters, dying well, and care settings and services.

Multilingual Palliative Care Resources

USEFUL LINKS/ORGANISATIONS

PALLIATIVE CARE AUSTRALIA AND PALLIATIVE CARE VICTORIA

In collaboration with Palliative Care Victoria, Palliative Care Australia has published a series of fact sheets on palliative care in twenty-one (21) different languages. Resources are available in Amharic; Arabic; Chinese; English; Farsi; Greek; Hindi; Italian; Karen; Polish; Portuguese; Punjabi; Russian; Serbian; Somali; Spanish; Tagalog; Tigrinya; Turkish; Urdu and Vietnamese.

The resources can be helpful to a person who is palliative as well as their family and outline how palliative care can help, such as, a nurse calling or visiting at home to see how you are going, help with medications, and more.

Palliative Care Victoria’s website also features additional content in community pages, available in various languages.

Paediatric Palliative Care

USEFUL LINKS/ORGANISATIONS

PALLIATIVE CARE AUSTRALIA
Call (02) 6232 0700

Palliative Care Australia (PCA) is the national peak body for palliative care. PCA believes high quality palliative care should be available and accessible to people living with a life-limiting illness when and where they need it.

Palliative Care Australia (PCA) and Paediatric Palliative Care Australia and New Zealand (PaPCANZ) deliver the new Paediatric Palliative Care website, co-designed with families/carers, health professionals and support organisations.

This new website is your one-stop destination for quality paediatric palliative care information and resources for families, carers, young people and health professionals experiencing paediatric palliative care.

This website is one of 10 key activities included in the Paediatric Palliative Care National Action Plan Project, which received grant funding from the Australian Government as part of the Supporting Children with Life Threatening Medical Conditions and their Families 2019 election commitment. This exciting three-year project commenced in July 2020.

You can contact the PCA Paediatric Project Team at paediatrics@palliativecare.org.au.

 

PAEDIATRIC PALLIATIVE CARE NATIONAL ACTION PLAN PROJECT

The paediatric palliative care resources within this website will continue to evolve over time to provide new and updated information and materials. The website was co-designed with health care professionals, support organisations, and families to provide quality information, and resources about paediatric palliative care, as well as a National Service Directory in one easily accessible location.

It is essential to have information about paediatric palliative care that caters to the needs of specific groups. To address these differing needs, the website has  dedicated sections for children, young people, families, carers and health care professionals.

Paediatric palliative care is about improving the quality of life of infants, children and young people diagnosed with a life-limiting condition and supporting those who care for them. It involves a diverse range of conditions, symptoms, and experiences. Paediatric palliative care acknowledges these differences and provides individualised, holistic care that is focused on the physical, emotional, social, financial, cultural, and spiritual needs of the child and family.

Palliative Care

USEFUL LINKS/ORGANISATIONS

AUSTRALIAN DEPARTMENT OF HEALTH

The Australian Department of Health provides consumers of care with significant information and a large number of online and printable resources about palliative care in general and advance care planning in particular. Some of the topics discussed are:

  • your palliative care wishes and expectations;
  • holding conversation with loved ones about palliative care;
  • advance care planning and directives; and
  • finding palliative care service providers

 

CARE SEARCH
https://www.palliaged.com.au/

CareSearch is a palliative care knowledge network which consolidates online palliative care knowledge for people needing palliative care and their families, general community and health professionals.

Its Mission is to ensure everyone receiving or providing palliative care has access to trustworthy evidence-based information to support person-centred decision-making and the transition to palliative care.

Its approach is to ensure that what they publish on the websites is trustworthy. They have developed a structured approach to evidence retrieval, appraisal and communication known as the CareSearch Model.

The CareSearch Project

The project is responsible for two major websites, the CareSearch website and the palliAGED website. It also works closely with a number of other projects to maximise impact within the sector.

 

PALLIATIVE CARE AUSTRALIA (PCA)
Call (02) 6232 0700 or Online Contact Form

Palliative Care Australia (PCA) is the national peak body for palliative care.

PCA believes high quality palliative care should be available and accessible to people living with a life-limiting illness when and where they need it.

Palliative Care Australia provides individuals, carers and loved ones with detailed information on palliative care, including accessing palliative care in Australia, holding honest end-of-life conversations, advance care planning, caregiving, dying and palliative care myths, to name a few.

PCA has representation in all Australian states and territories. It was launched in 1998, developing from the Australian Association for Hospice and Palliative Care Inc which started in 1991.

AUSTRALIAN CAPITAL TERRITORY (ACT)
Call (02) 6255 5771 or Fax (02) 6273 9590 or Email
NEW SOUTH WALES
Call (02) 8076 5600 or Email
NORTHERN TERRITORY
Call (08) 8951 6761 or Fax (08) 8951 6774 or Email
QUEENSLAND
Call (07) 3842 3242 or Email
SOUTH AUSTRALIA
Call (08) 8271 1643 or Email
TASMANIA
Call (03) 6231 2799 or Email
VICTORIA
Call (03) 9662 9644 or Email
WESTERN AUSTRALIA
Call 1 300 551 704 or Email
PALLIATIVE CARE NURSES AUSTRALIA
Call (02) 8405 7921 or Email
AUSTRALIAN AND NEW ZEALAND SOCIETY OF PALLIATIVE MEDICINE
Call (02) 5104 7742 or Email

 

ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLES PALLIATIVE CARE RESOURCES (PALLIATIVE CARE AUSTRALIA)

Palliative Care Australia (PCA) aims to improve the quality of life of all Australians living with a life-limiting illness/condition and their families, and represents all who work in palliative care services.

Palliative Care Australia has developed resources to assist the Aboriginal and Torres Strait Islander Peoples, their communities, and health professionals working within communities to ensure approaches and practices are culturally safe and respectful.

When Aboriginal and Torres Strait Islander Peoples are diagnosed with a life-limiting illness, or are approaching the end of their life, they should be able to access quality palliative and supportive care that is consistent with their wishes, when and where they need it, no matter where they live. Importantly, this care must be culturally safe and responsive, incorporating the social, emotional, and cultural well-being of the person, as well as their family and the community.

For many Aboriginal and Torres Strait Islander Peoples talking about ‘death or dying’ can be an uncomfortable experience. Culturally, discussing this topic can be perceived as tempting it and viewing images of a person who has died or using their name in conversation can impact that person’s journey. In recognition of this, warnings are commonly added to protect Aboriginal and Torres Strait Islander Peoples from unnecessary stress.

It is not uncommon to refer to ‘death and dying’ as ‘sorry business, sad business, finishing up, final days, final footsteps/final footprints, journey, pathway or going back home or to the dreaming.’ Similarly, the term ’palliative care’ is not easily translated in the many and diverse languages spoken in Aboriginal and Torres Strait Islander communities.

 

NATIONAL REGISTER OF PALLIATIVE CARE CONSUMERS AND CARERS (PALLIATIVE CARE AUSTRALIA)

Palliative Care Australia established the National Register of Palliative Care Consumers and Carers to give a voice to those living with a life-limiting illness, people who are receiving palliative care, their family, carers and the palliative care volunteers who support them. Palliative Care Australia seeks for personal experiences to matter to improve services for anyone who may require palliative care.

The National Register is a group of independent people with a lived experience of palliative care from across Australia. Its representatives have a varied range of experiences with palliative care and are able to use their lived experience and communication skills to share their stories and provide input into public policy and service delivery related to palliative care in Australia.