SHARING OUR IDEAS & BELIEFS

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1 SHARING OUR IDEAS & BELIEFS views about organ and tissue donation from the macedonian community in the illawarra What is this booklet about? This booklet profiles the diverse views about organ and tissue donation from members of the Macedonian Orthodox communities in the Illawarra who participated in focus groups conducted during The focus groups highlighted some common questions that community members had about organ and tissue donation and their desire for information that addressed their concerns. Macedonian Orthodox Communities in the Illawarra Discovering and Discussing Organ and Tissue Donation...Together

2 SHARING OUR IDEAS & BELIEFS views about organ and tissue donation from the macedonian community in the illawarra A testimony to community ideas and beliefs Organ and tissue donation can be a sensitive issue. It is also a subject about which people have many questions. In 2011 the Centre for Health Initiatives (University of Wollongong) and the Illawarra Shoalhaven Local Health District consulted with local community members from Macedonian Orthodox communities to better understand their views about organ and tissue donation. The discussions highlighted that community members have a range of questions about organ and tissue donation and have a desire for information that addresses their concerns. This booklet profiles the diverse views of community members who participated in focus groups conducted during Sponsored by 1

3 DISCOVER the issues important to you and your community What is organ and tissue donation? Most of the Macedonian community members who participated in the focus groups had heard about organ and tissue donation and were aware of some of the related issues. However, many participants still had questions about the processes involved and wanted more information. We know about this because when we get our driver s licence issued they ask us whether you d like to be a donor. (Male, over 40) Nobody knows about it. I have registered as a donor but nobody knows about the system. (Female, over 40) Expert response 2 : Organ and tissue donation is life-saving and life-transforming. Organs and/or tissue are removed from someone who has died (a donor) and transplanted into someone (a recipient) who is very ill or dying from organ failure. A person can donate a number of different organs, including the heart, lungs, kidneys, liver and pancreas. They can also donate certain body tissues, such as corneas, skin, heart valves, bone and pancreas tissue. How do members of the Macedonian Orthodox community in the Illawarra feel about organ and tissue donation? In general, Macedonian Orthodox community members who attended the groups felt that organ and tissue donation was a positive thing to do. However, they had some concerns about the actual processes and procedures. I think being an organ donor... feels good. You give your organs to help someone else. (Male, under 40) 2

4 If there s...help for someone to survive and something good to come out of the tragedy then why not? (Female, over 40) Expert response 2 : Organ and tissue donation is considered by many people to be a positive and selfless thing to do. The main reason people decide to become donors is to help save or improve the lives of others. In fact, one organ and tissue donor can save or enhance the lives of 10 or more people. If I am a donor, will I still receive life saving medical care? Some Macedonian community members (especially older community members) worried that if they were a registered donor they may not receive the life saving medical care they required. We are scared because if you have an accident and are an organ donor, the hospital staff will rush to take your organs rather than taking all of the medical care to save your life. (Male, over 40)...It s amazing how many of the elderly believe that the doctors wouldn t really put 100% effort to saving you because... once you pass away they ll get your organs and save someone else s life. (Female, under 40) Expert response 2 : The quality of care provided to a patient is never compromised by the potential for organ and tissue donation. This is because medical staff do everything possible to save lives. Their first duty is saving the patient s life. In fact, organ and tissue donation will only be considered after all efforts fail and the person has been legally declared dead. Usually the Australian Organ Donor Register is only checked after the person has died. 3

5 How can the doctors be sure that someone won t recover? Another concern of some Macedonian community members was the degree to which they could be sure there would be no chance of recovery for themselves or a loved one once organ and tissue donation was agreed upon. This concern was strengthened by the belief that doctors can sometimes make mistakes and hearing stories of people recovering after families had been told they would not. The concern mainly was that after the decision was made (to donate organs)... these people woke up. (Female, over 40) I ve got a friend who ended up in intensive care and the question was raised whether to turn off the breathing machine or not... After a couple of days he woke up, everything was fine and he was still alive. (Female, over 40) Sometimes doctors make mistakes. (Female, over 40) Expert response 2 : Organ and tissue donation can only be considered after a person has been declared dead. In Australia, the two legal definitions of death are brain death the brain has stopped functioning and will not recover; or heart (cardiac) death the circulation of blood in the body of a person has ceased. In Australia, brain death must be certified by two doctors who assess the basic functions that the brain controls. Although people in a coma will respond in some way to the stimulus, someone whose brain has died will show no response to these tests. In some cases, a special x-ray or scan may also be performed to show that there is no blood flow to the brain. In Australia, a senior doctor must certify that a person s circulation has ceased and will not recover. Australia has strict ethical guidelines concerning all aspects of the organ donation procedures. Please see the brochure Having Our Questions Answered for more details. 4

6 Does the Macedonian Orthodox Church support organ and tissue donation? Community members were unsure of the Macedonian Orthodox Church s position on organ and tissue donation, with some saying their religion supported donation while others felt it may be culturally unacceptable. We are not aware of any restrictions according to the religion. (Male, over 40) You are not allowed to donate organs, not in a Macedonian culture. (Female, under 40) Another area of concern was whether organ and tissue donation involved mistreatment of the body. The belief is the way you were born into the world is the way you go out. (Female, under 40)...the thing with organ donation... is they don t like their loved one being cut open. (Male, under 40) Many Macedonian community members stated that whilst they had considered organ and tissue donation in relation to their religious views, they felt that ultimately donation was a personal decision. I think it s also a personal thing, you don t have to always follow your culture. (Female, under 40) I am an organ donor... that s my personal decision. (Female, under 40) Expert response 2 : There is currently no official statement on organ and tissue donation from the Macedonian Orthodox Church. If you have questions about the views of the church regarding organ and tissue donation please contact your local priest. 5

7 Are organ and tissue donors able to have an open casket funeral? Many of the Macedonian community members were uncertain whether organ and tissue donation would significantly change the appearance of their body. This was an important issue given that open-casket funerals are common and some community members wondered whether there may be visible signs of donation. And they need to look [good], it s an open coffin and you show off the body and the whole lot. (Male, under 40) You can t notice when the dead body is there and it s dressed and everything is there. (Female, over 40) Another query was whether organ and tissue donation interfered with timely funerals....the other issue is when the body is kept for too long... Macedonians don t want to keep the body for too long after death. (Female, under 40) Expert response 2 : Organ and tissue donation will not affect viewing of the body and funeral arrangements for the organ donor. After death organ and tissue donation happens quickly, so there is no need to delay the funeral. Viewing of the body and an open casket funeral are both possible because the body will look normal. Organs are removed surgically by highly skilled surgeons. The incision is stitched closed and the body is dressed for viewing and for the funeral, hiding the incision. 6

8 DISCUSS...it s more than a personal decision If I am a registered donor, will doctors still ask my family to provide consent? Some Macedonian community members were uncertain about who gives final consent for organ donation to go ahead. Specific concerns included the role of the family in consenting and what happens if the family disagrees with the person s wishes. If the person had ticked and said yes but then you go to the next of kin and they say no, [do] you listen to the next of kin? (Female, under 40)... when my mother-in-law passed we were asked to make the final decision regardless of what it said on her licence. (Female, under 40) Expert response 2 : Even if you are registered on the Australian Donor Register your family will be asked to confirm your wishes. If you are not registered, your family will still be asked to confirm your wishes and then make a decision. That is why it is important to discuss organ donation with your family, so that you can know each others wishes. You also need to be prepared if you are asked to confirm your loved one s wishes. 7

9 Why is discussing my decision with my family important? The majority of Macedonian community members acknowledged that discussing organ donation amongst families was important. The main reason they thought discussion was important were so that they could fulfil a loved one s wishes. It s a matter of just getting it out there and just being open with each other... (Female, under 40) I think the main thing is that it s ok to talk about it within family, regardless of what gender and generation you are... (Female, under 40) Expert response 2 : After you have discovered the facts about organ and tissue donation, and made an informed decision about it, it is important that your family know your wishes and that you know theirs. Research indicates that around 40% of Australians have not discussed donation with their family. The most important thing that helps a family confirm a loved one s wishes one day is asking and knowing those wishes today. 8

10 What if discussing organ and tissue donation is uncomfortable for my family? Whilst most members of the Macedonian community acknowledged that discussing organ and tissue donation was important, some also felt it was a difficult topic to discuss because it was related to death. Such discomfort seemed to be particularly strong in the older community members. A lot of people believe that if you don t talk about things they won t come. (Female, under 40) Really its talking about death isn t it? And who wants to talk about death? (Female, under 40) Some had spoken to a family member about organ and tissue donation. In most cases this was prompted by their driver s licence renewal....when I was getting my licence...that s when the conversation occurred- well are you going to be a donor or not? (Female, under 40) We talk about it and even my children as soon as they got their licence... we talked about it (Female, under 40) Expert response 2 : Starting a discussion about organ donation can be difficult but using everyday situations can make it less uncomfortable. Possible everyday situations include making a will or seeing or hearing stories about organ donation in the media. For other ideas and resources to support your discussion about organ donation, please visit 9

11 Personal Stories Several of the community members shared their personal experiences with organ and tissue donation and transplantation. Many of the stories included knowing someone, often from the Macedonian community, who needed an organ or had received a donated organ.... our friend received [a donated organ] after two years of waiting. He is very happy... and very healthy. (Female, over 40) I know many people that are waiting. (Male, over 40) My husband s cousin was waiting for a liver... he died waiting. (Female, under 40) I worked with a guy who needed a kidney...he lost a lot of weight... he didn t look good... then a few months later he got a donor and he s fine now. (Male, under 40) Organ and tissue donation is an issue that affects all communities in Australia, including the Macedonian community. 10

12 References 1. Centre for Health Initiatives (2011) Report from focus groups conducted with Macedonian Orthodox community members in the Illawarra regarding organ and tissue donation. University of Wollongong. 2. DonateLife (2011) Expert responses to questions asked by Macedonian Orthodox community members in the Illawarra. Organ & Tissue Authority: Canberra. 11

13 An additional resource has been developed for the Macedonian community called Having our Questions Answered. It provides expert responses to common technical questions asked about organ and tissue donation raised by members of the Macedonian Orthodox community in the Illawarra. This brochure and other information is available at having our questions answered about organ and tissue donation processes and procedures What is this brochure about? This brochure provides expert responses to common questions asked about organ and tissue donation raised by members of the Macedonian Orthodox community in the Illawarra who participated in focus groups during Macedonian Orthodox Communities in the Illawarra Discovering & Discussing Organ Donation...Together 12

14 Macedonian Orthodox Communities in the Illawarra Discovering and Discussing Organ and Tissue Donation Together Sharing our ideas & beliefs Having our questions answered Knowing each other s wishes The project is sponsored by For more information on organ and tissue donation, please contact DonateLife NSW on (02) or visit

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