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Engaging CALD Communities in Organ and Tissue Donation Discussions AUSTRALIANMOSAIC The magazine of the Federation of Ethnic Communities’ Councils of Australia Spring 2017 Engaging CALD communities in Organ and Tissue Donation Discussions Issue 47 Australian Mosaic The magazine of the Federation of Ethnic Communities’ Councils of Australia (FECCA) Print Post Publication No. PP229219/00162 ISSN 1447-8765 EDITOR: Dr Janecke Wille DESIGNER: Kylie Smith Design PRINTING: Elect Printing DISCLAIMER: Any views and opinions expressed within Australian Mosaic are solely those of the individual author, authors, or other information source and do not necessarily represent the opinion of, or any endorsement by, FECCA. ADDRESS: PO Box 344 CURTIN ACT 2605 Telephone: 02 6282 5755 Email: [email protected] www.fecca.org.au © 2017 FECCA No part of this publication may be reproduced without the written permission of FECCA. Acknowledgement This project is sponsored by FECCA received funding from the Department of Social Services to produce Australian Mosaic magazine. contents A MESSAGE FROM THE PAYING IT FORWARD FECCA CHAIRPERSON 04 Joseph Caputo OAM JP 19 Melissa Kozlina A MESSAGE FROM THE FECCA DIRECTOR ENGAGING CALD COMMUNITIES 05 Dr Emma Campbell 20 FACTS ON ORGAN AND TISSUE DONATION PROJECT HAYAT SPREADS COMPASSION FOR COMMUNITY LEADERS AND HOPE FOR PATIENTS ON WAITING LISTS FOR LIFESAVING SURGERY 07 Paula Masselos 22 Bahriye Bol-Apak RESOURCES FOR CALD COMMUNITIES A GIFT OF GENEROSITY— IN ORGAN AND TISSUE DONATION MY EXPERIENCE 10 DISCUSSIONS 25 Dr M A Sayek Khan LIFE GIVING STORIES—THE VALUE ORGAN AND TISSUE DONATION AMONG OF STORYTELLING IN REACHING CALD FAMILIES 13 THE COMMUNITY 28 Mr Nigel Palk WAITING—A PERSONAL JOURNEY FROM FIJI TO DIALYSIS IN AUSTRALIA RELIGIOUS CONVICTION 14 Semaema Grace 30 TELL YOUR LOVED ONES TISSUE AND ORGAN DONATION— YOUR WISHES AN ISLAMIC PERSPECTIVE 16 Rita Germanos 31 Mohamed Elshafei ORGAN DONATION AND THE SHARING THE GIFT OF LIFE JEWISH COMMUNITY Fulvia Nisyrios 18 33 Rabbi Moshe D Gutnick THANKFUL FOR THE GIFT 18 Lorenzo Camporeale 3 A message from the FECCA Chairperson Joseph Caputo OAM JP Welcome to our special Spring edition of Australian ones. This is because, in Australia, the family of Mosaic. This issue, Engaging CALD Communities every potential donor is always asked to confirm in Organ and Tissue Donation Discussions, is a their loved one’s wishes. According to DonateLife, result of a Community Awareness Grant received by nine in ten families agree to donation proceeding FECCA from the Organ and Tissue Authority (OTA). when their loved one is a registered donor. This is The aim of this grant is to encourage culturally and because families know with confidence that they are linguistically diverse (CALD) community leaders to upholding their loved one’s wishes. initiate conversations on organ and tissue donation In research conducted by the OTA, numbers showed in their communities. that just 14% of those surveyed reported knowing Organ and Tissue donation is an incredibly important if their partner or closest family members have topic to discuss in all of Australia’s communities. The registered their donation decision, and only 41% gift of saving a life is a completely altruistic gift that were confident they would be able to make a donation most Australians (67%) are willing to give. Numbers decision on behalf of a family member. While there show how one person can save the lives of ten or is insufficient research on similar numbers among more people by donating organs. Yet, only 33% (6.2 the CALD communities of Australia, we do know that million) Australians aged 16 years and over have the ethnic and/or cultural background of a potential joined the Australian Organ Donor Register (AODR). donor and their family can impact the likelihood of Increasing the number of Australians registering consent for donation. This issue of Australian Mosaic their donation decision, in particular among CALD will assist CALD community leaders in starting communities, is the key purpose of this issue of informed discussions on organ and tissue donation Australian Mosaic. Thanks to a new registration in their communities and ultimately increase the process, it is now faster and easier than ever to number of registered donors. register your donation decision on the Australian The contributors to this issue of Australian Organ Donor Register (AODR). It is important to Mosaic range from medical experts explaining note, unless you live in South Australia, you can the importance of organ donation, individuals no longer register your donation decision via your talking about their personal experience with organ driver’s licence. To find out more about organ and donation, religious perspectives, to people raising tissue donation and to register your donation awareness and encouraging informed discussions decision in just minutes, visit donatelife.gov.au. on organ and tissue donation in CALD communities. The main message FECCA wishes to emphasise It is my hope that this issue of Australian Mosaic can is the following: if you have to become decided become a part of the national discussion around an organ and tissue donor, you need to register organ and tissue donation and in particular form a your decision on the AODR and most importantly, key part of discussions in CALD communities. By your donation decision with your loved discuss providing links to the wide range of faith, language and cultural resources on the DonateLife website as well as stories and information from CALD communities on organ and tissue donation, FECCA hopes to increase the registrations on the AODR among Australian CALD communities. I sincerely thank all the contributors to this issue for sharing their, sometimes very personal, stories on the issue of organ and tissue donation in Australia. As with previous issues of Australian Mosaic, its success would not have been possible without the many contributions from Australia’s multicultural society. 4 A message from the FECCA Director Dr Emma Campbell I am very pleased to introduce our special Spring that community leaders can find on the DonateLife issue of Australian Mosaic with a sole focus on Organ website and encourages and supports them in the and Tissue Donation among CALD communities. The opening discussions. aim is to provide CALD community leaders with the Earlier this year, FECCA was pleased to be part tools and resources necessary to start discussions of an event in Bankstown, NSW, promoting organ on organ and tissue donation in their respective and tissue donation among CALD communities. communities. Research has demonstrated that Life Giving Stories is an event where transplant Australians from CALD backgrounds are less likely recipients and donor family members use storytelling to have decided about, registered or discussed and personal images to share their experiences of organ and tissue donation with their families. donation with a wider audience. FECCA is delighted The issue of organ and tissue donation can be a to present two of the stories from this year’s event as difficult topic for many people to discuss as it articles in this issue of Australian Mosaic together involves questions of death, dying and grieving. with three stories from previous years. For some CALD communities and individuals in Semaema Grace describes her emotional journey Australia there are additional factors to consider, from being left by her parents in Fiji, being including culture and religion, when having these adopted by a family in Australia, to getting ill discussions. For example, individuals may be and experiencing the endless wait for an organ unsure whether their culture or faith supports organ transplant. Demonstrating the hopes and dreams and tissue donation and this can often prevent of a ‘normal’ life, Semaema Grace provides a families from addressing this subject.1 beautiful example of why organ donation must be This special edition of Australian Mosaic hopes to encouraged to save the lives of young people. address some of these barriers by providing articles Rita Germanos also tells a moving and personal looking at organ and tissue donation from a range story of her experience with organ donation. Being of perspectives. From personal journeys through the a living donor herself, to her son, organ donation donation process, religious points of view, and to is very close to her heart and she encourages health personnel working with CALD communities, everyone to register on the Australian Organ Donor this issue will give CALD community leaders a Register (AODR). As a mother, she says, she never variety of resources needed to get the discussions questioned her decision to donate a kidney to started in their communities. The aim is to facilitate her son and since then she has worked tirelessly informed discussions in the wider community and encouraging others to register at donatelife.gov.au. raise awareness of the important issue of organ and tissue donation. The main objective is to increase registrations on the AODR among CALD communities. We start this Australian Mosaic with a contribution from Paula Masselos who describes the importance of organ and tissue donation and gives an overview of the many resources provided by the Organ and Tissue Authority (OTA) through the DonateLife network, as well as the many faith rulings now available in support of organ donation. As part of the ‘DonateLife…the greatest gift campaign’, OTA developed resources in a range of languages for communities and community leaders to use in their campaigning. This special issue of Australian Mosaic promotes the resources 5 An important aspect of organ and tissue donation Nigel Palk, a Donation Specialist Nursing Coordinator awareness and in increasing registrations on the for DonateLife, also encourages the discussion with AODR, in particular in CALD communities, is to family. Mr Palk also notes the importance of medical engage communities in the discussions. DonateLife staff to include the family in discussions after death has a range of resources and information in 18 as opposed to taking a protecting view.
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