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RESOURCES

ADVANCE CARE PLANNING

USEFUL LINKS/ORGANISATIONS

ADVANCE CARE PLANNING AUSTRALIA
Call 1 300 208 582 or (03) 9496 5660

Supports Australians to make their own choices about their future health and care through advance care planning services such as:

  1. advice and support on advance care planning;
  2. support for carers in their role as substitute decision-makers;
  3. volunteering opportunities for people to support others with advance care planning; and
  4. bespoke information for diverse communities and specific health settings.

 

ACPA advises that 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.

 

AUSTRALIAN DEPARTMENT OF HEALTH

Provides people with 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:

  1. your palliative care wishes and expectations;
  2. holding conversation with loved ones about palliative care;
  3. advance care planning and directives; and
  4. finding palliative care service providers

 

MY VALUES

It offers a set of especially-constructed statements designed to help people identify, consider and communicate their wishes about the medical treatment they would want in the later stages of life. It supports people considering important questions and choices that may not have occurred to them and can help sort out and clarify some very emotive issues that can be difficult to discuss.

This tool assists people in creating their own values profile, explaining their values in relation to life, death and medical intervention. This profile becomes crucial for doctors and families who need to make decisions on behalf of others who, due to accident, serious illness or declining health, are no longer able to make or communicate their choices.

 

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

Provides individuals, carers and loved ones with information on Advance Care Planning in Australia, including benefits, a practical and simple process to plan for advance care which is state-specific and information on end-of-life law.

Palliative Care Australia (PCA) was launched in 1998 and is the national peak body for palliative care which has representation in all Australian states and territories. PCA believes that high quality palliative care should be available and accessible to people living with a life-limiting or terminal illness when and where they need it.


FILMS / TV SERIES / VIDEOS

INDIGENOUS ADVANCE CARE PLANS VIDEO

Supports professional health, Aboriginal and community workers to assist in the completion of end-of-life Advance Care Plans in indigenous communities in a respectful, responsive and culturally-safe manner. 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

Assists Australians affected by cancer and support people when they need it most, speaks out on behalf of the community on cancer issues, empowers people to reduce their cancer risk, and finds new ways to better detect and treat cancer.

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.

CARERS

USEFUL LINKS/ORGANISATIONS

CARER GATEWAY
Call 1 800 722 737
8am-5pm, Monday-Friday

Provides carers with practical information and resources.

Importantly, the interactive service finder helps carers connect to local support services.

 

CARERHELP

Provides access to useful and trustworthy information, tools, articles and videos. The resources are designed to help both, the people receiving care and caregivers, understanding what to expect.

It aims to empower people to cope with the hard times as well as they can, and to make space for good times as well. When carers feel ready for their role, everybody benefits. CarerHelp is managed by the Centre for Palliative Care.

 

CARERS AUSTRALIA

Advocates on unpaid caregivers behalf to influence policies and services at a national level.

It also manages the delivery of national programs, support and services for carers and works in collaboration with carers, carers associations, government and peak bodies to develop policy, advocacy, programs and events to improve the lives of Australia’s 2.7 million carers.

 

SANE AUSTRALIA
Call: 1 800 187 263 (10am-10pm AEST, Monday-Friday) or Online Chat or Join the Online Forum or Email

Provides peer support, counselling, support, information and referrals to adults who identify as having a complex mental health issue, complex trauma or high levels of psychological distress. They also provide support to the family or friends who care about them.

 

SERVICES AUSTRALIA

Provides information about carer payment and carer allowance as follows:

  • who can get the payment;
  • how much can they get;
  • claiming process;
  • managing the payment; and
  • other supports.

 

SUICIDE CALL BACK SERVICE
Call 1 300 659 467 (24 hours, 7 days) or Online Chat or Video Chat

Provides telephone and online counselling to people 15 years and over who are:

  1. suicidal;
  2. caring for someone who is suicidal;
  3. bereaved by suicide; and
  4. health professionals supporting people affected by suicide.

This service is especially suited to people who are geographically or emotionally isolated.

 

YOUNG CARERS NETWORK (YCN)
Call 1 800 422 737 (8am-5pm, Monday-Friday)

Raises awareness about young carers, provides information and refers young carers to access appropriate support.

YCN aims to enable young carers to engage with each other to share and connect through a range of opportunities. The YCN is an initiative of Carers Australia.


BOOKS FOR ADULTS

  • Caring for the Living and the Dying, Michael Barbato

DEATH & 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)

Encourages people 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 the important people in their lives, by inspiring a series of uplifting and interactive dinners to transform the seemingly difficult conversation about death into an intimate, shared experience. These dinners result in connection and action.

DOD provides a range of tools, reading and support materials, as well as tips to get the end-of-life conversation started at the dinner table. The initiative is supported by an interactive website that encourages end-of-life conversations to start with family and friends well in advance of an accident or an emergency, when people are overwhelmed or unable to communicate.

This initiative started in the USA with Michael Hebb and Angel Grant. For additional information, you can watch the video https://deathoverdinner.org.au/#intro-video or watch Michael Hebb’s TEDMED talk.

 

DYING TO KNOW DAY – AUGUST 2022?

Dying to Know Day is an annual event in Australia, created by the Groundswell Project Australia. It encourages people to start conversations about death. Guides and toolkits are supplied to support people to have conversations about death and dying with those who are important to them.

During August each year, people and organisations hold public events, gatherings at home or take individual action to improve their knowledge around choice at end of life.

 

EMBRACING LIFE – SCHOOL HEALTH PROMOTION PROGRAM
Calvary Bethlehem

Embracing Life is a palliative care video documentary launched by Calvary Health Care Bethlehem (CHCB). It encourages 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

Let’s Talk about Death over Zoom is a digital event held regularly by Calvary Health Care Bethlehem (CHCB). Hospital staff guide a discussion about illness, dying, death, grief and living well.

The event is free of charge. Post-event, attending participants 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 their 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.

Watch the video invitation
Enquiries to Linda Shaw, Calvary Health Care Bethlehem

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?

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.

END-OF-LIFE CARE AT HOME

USEFUL LINKS/ORGANISATIONS

CARING@HOME

The caring@home project aims to improve the quality of palliative care service delivery for all Australians, especially those who elect to live and die at home. Particularly, they provide resources  to support carers and families manage breakthrough symptoms safely when caring  for a person at home.

The project includes an extension for Aboriginal and Torres Strait Islander families (2017 – 2023) aimed at supporting the needs of First Nations peoples and based on a national consultation process that occurred during 2020 and 2021.


PAPERS

Co-creating an Ecology of Care (May 2015)

Western Sydney University, Cancer Council, ACU, Calvary, QUT, CSRIO

GRIEF & LOSS

USEFUL LINKS/ORGANISATIONS

AUSTRALIAN CENTRE FOR GRIEF AND BEREAVEMENT (ACGB)
Call (03) 9265 2100 or 1 800 642 066 or Email

The Australian Centre for Grief and Bereavement (ACGB) is an independent, not for profit organisation which opened in January 1996. As the largest provider of grief and bereavement education in Australia, ACGB has been providing support for bereaved and grieving Australians for over 22 years.

 

FEEL THE MAGIC
Call 1 300 602 465 or Email

Feel the Magic is an Australian charity that provides early intervention grief education programs for children aged 7 to 17, who are experiencing pain and isolation due to the death of a parent, guardian, or sibling. Their aim is to create a world where grieving children and their families feel supported, empowered, and can begin to move forward with their lives.

 

GOOD GRIEF
Call 1 300 379 569 or Email

Good Grief provides a range of programs to meet the needs of both children and adults living with grief,  in a range of community contexts. In most cases, participants in the programs are adjusting to significant life events that have triggered experiences of change, loss and grief. Programs include:

  • Seasons For Growth;
  • Seasons For Healing; and
  • Storm birds

 

GRIEF LINK

GriefLink provides information for people who are dealing with the grief caused by the death of someone close to them, and for those who are supporting them.

 

NATIONAL ASSOCIATION FOR LOSS ANAD GRIEF (NALAG)
Call (02) 6882 9222 or Email

A not for profit organisation, formed in 1977 following the Granville Train Disaster, to act as a support network for people experiencing loss and grief. The organisation continues to provide a service to individuals, families and communities through its Grief Support service and now has branches in Dubbo (Head Office), Mudgee, Hunter and Sydney (Telephone).

Each year, NALAG also conducts a variety of quality educational programs, workshops, training and mental health awareness events to enhance wellbeing and promote resilience to NSW communities

 

NATIONAL CENTRE FOR CHILDHOOD GRIEF
Call 1 300 654 556 or Email

The National Centre for Childhood Grief (NCCG) is dedicated to helping bereaved children and their families rebuild their lives, by teaching them how to live with their grief.

 

THE DOUGY CENTRE (USA)
Email

Provides support for children, teens, young adults, and their families grieving a death. Although this program is US based, Australians can access  some excellent online resources.

 

WHAT’S YOUR GRIEF
Email

The program promotes grief education, exploration, and expression in both in practical and creative ways, providing:

  • resources related to understanding and coping with grief and loss;
  • guidance on how to help a grieving friend or family member;
  • online courses about grief and supporting someone who’s grieving; and
  • grief podcast; and
  • supportive community.


BOOKS FOR ADULTS

  • A Grief Observed. Lewis, C S (1996)
  • A Parent’s Guide to Raising Grieving Children. Silverman, P et al Oxford University Press (2009)
  • A Widow’s Story. Joyce Carol Oates Ecco (2011)
  • After The Death Of Our Parents. Levy, Az. Da Capo Press (2000)
  • Andrew Thompson and Tricia Irving Hendry (2012), SKYLIGHT NZ
  • Bereaved Children and Teens: A Support Guide for Parents and Professionals. Earl Grollman
  • Beyond Words – Grieving when your child has died.
  • Coping with Grief. ABC. Australia. McKissock, M (1985)
  • Forever Loved: A Guidebook for Widows and Widowers. Carr, M. and Pont , A. (2012)
  • Getting Back to Life When Grief Won’t Heal. Kosminsky, P. McGraw – Hill (2006)
  • Going to Pieces Without Falling Apart. Mark Epstein Harmony (1999)
  • Grief and Remembering. Kellehear, A. (2001)
  • Healing Grief – A Guide to Loss and Recovery. Ward, B. Vermillion (1993)
  • Helping Children Cope with the Loss of a Loved One: A Guide for Grown Ups. William C. Kroen
  • How to go on living when someone you love dies. Therese A. Rando
  • Letting Go of the Person You Used to Be: Lessons on Change, Loss, and Spiritual Transformation. Surya Das, Harmony, (2004)
  • Nothing was the Same. Kay Redfield Jamison Vintage (2011)
  • Now that the Funeral is Over: Understanding the Effects of our Grief. Zagdanzki, D. Hill of Content (1997)
  • Now that the Funeral is Over. Doris Zagdanski
  • On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss. Kubler-Ross, E. and Kessler, D. (2005).
  • Reflections of a Setting Sun, Michael Barbato
  • The Grieving Teen. Helen Fitzgerald
  • The Heart of Grief. Attig, T. Oxford University Press (2002)
  • The Orphaned Adult: Understanding and Coping with Grief and Change
  • The Year of Magical Thinking. Didion, J. Random House, New York (2005)
  • Understanding the Effects of our Grief. Zagdanzki, D (1997), Australia.
  • When Bad Things Happen to Good People. Kushner, H. Random House (1997)
  • When Bad Things Happen to Good People. Kushner, H (1981) USA.
  • Young Widow’s Guide to Home Improvement. Lloyd, V, University of Queensland Press, Brisbane (2008).


BOOKS FOR CHILDREN

  • Beginnings and Endings with Lifetimes in Between, Bryan Mellonie and Robert Ingpen
  • Dan’s Grandpa, Sally Mordan
  • Help me say goodbye: Activities for helping kids cope when a special person dies. Janis Silverman
  • ‘What’s Dead Mean?’ Zagdanski, D (2001) Melbourne: Hill of Content.
  • Helping Children Cope with the Loss of a Loved One: A Guide for Grown Ups.
  • How do I Feel About? When People Die. Levette, S (2001)
  • How it Feels When a Parent Dies. Krementz, J (1993)
  • Jenny Angel. Wild, M and Spudvilas, A (1999) Australia: Viking.
  • Kroen, W (1996) USA.
  • Lifetimes: Beginnings and Endings with lifetimes in between.
  • Mellonie, B & Ingpen, (1983) Millenium Press.
  • The Grief of our Children. McKissock D, Bereavement C.A.R.E. centre.
  • Waterbugs and Dragonflies. Stickney, D. (1982) Ohio.
  • When I’m Feeling Sad. Moroney T. Five Mile Press (2005)
  • When Someone Very Special Dies: Children Can Learn to Cope with Grief Margaret Heegaard


BOOKS FOR YOUNG PEOPLE

  • Brothers, Van Lieshout, T. (1996)
  • Can Do It But It’s Still Hard: A booklet for teenagers about grief. Southern Highlands Bereavement Care Service, Bowral Hospital, Bowral NSW.
  • How it Feels When a Parent Dies. Krementz, J (1993)
  • Something I Have Never Felt Before: How Teenagers Cope with Grief. Zagdanski, D (1990/94)
  • The Grief Book: Strategies for Young People E Vercoe and K Abramowski
  • The Grieving Teen. Fitzgerald, Simon & Schuster (2000)
  • Weird is Normal When Teenagers Grieve. Wheeler, J.L. (2011)


PAPERS

HEALING

BOOKS FOR ADULTS

  • Kitchen Table Wisdom. Stories that Heal. Remen, R.N.
  • Reflections of a Setting Sun, Michael Barbato
  • My Grandfather’s Blessings. Remen, R.N.

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.

SELF-CARE

USEFUL LINKS/ORGANISATIONS

PALLIATIVE CARE AUSTRALIA (PCA)

The Planning for Self-Care (section within the PCA website presents information about the development of a  a personalised self-care plan as  a solid foundation for effective self-care. While systematic care plans are routinely developed to achieve therapeutic goals for people living with illness, self-care plans are an under-utilised resource by caregivers.

If you’re not yet sure about developing a formal self-care plan, you might like simply to reflect on the self-care planning process. This is because the proactive nature of consciously planning for self-care can also be effective, without necessarily documenting a plan on paper. Putting self-care into practice is much easier and more effective when we understand the different domains of, and effective strategies for, self-care.

 

PRACTISING SELF-CARE (PALLIATIVE CARE AUSTRALIA)

There is more to practising self-care than you think; you might say there’s an art to it.

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