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Any day is a good dayto talk about organ and tissue donation

DonateLife Guide for Community Speakers

Produced by the Organ and Tissue Authority with the assistance of Gift of Life Inc. and in consultation with National Communication Charter signatories.

© Organ and Tissue Authority 2013

How can you get involved?Volunteers who wish to raise awareness about organ and tissue donation, including by presenting community education talks about organ and tissue donation, can contact their nearest DonateLife Agency or community organisation (see page 34–36 for contact details).

Dear DonateLife supporter,

Thank you for your commitment to educating Australians about the facts regarding organ and tissue donation as part of the national DonateLife community awareness and education program.

The DonateLife Guide for Community Speakers has been developed to enhance your community education efforts by providing you with factual, evidence-based information and tools to help you share the facts about organ and tissue donation within your community.

Community organisations, advocates and volunteers, together with DonateLife Network staff in every state and territory, play an important role in normalising the subject of organ and tissue donation. It is a conversation every Australian family needs to have.

By generously giving your time to share the DonateLife story you are doing much to encourage Australians to:

� Discover the facts about organ and tissue donation;

� Decide and register their informed donation decision on the Australian Organ Donor Register; and, most importantly,

� Discuss their donation decision with their next of kin and know each other’s wishes.

Family discussion about organ and tissue donation wishes is critical to achieving increased organ and tissue donation rates. This is because in Australia the family will always be asked to confirm the donation wishes of the deceased before donation for transplantation can occur. While the majority of Australians are willing to become organ (80%) and tissue (78%) donors, 44% of Australians do not know the donation wishes of their loved ones.

Our collective community education and awareness activities can make a profound difference in empowering Australians to make informed donation decisions and to share these decisions about organ and tissue donation with their loved ones. This will lead to increased family consent rates and more Australian lives will be saved and improved through the generous act of organ and tissue donation.

Thank you for your efforts to get Australians talking.

Sincerely

Ms Yael Cass Chief Executive Officer

/ 2 Community Speakers Guide /

1. Introduction 3

2. Let’s talk about organ and tissue donation 3 2.1 Key facts and statistics 4 • Australian organ and tissue donation rates 4 • Community awareness and family discussion 5 2.2 Why we need to get Australians talking 6 2.3 What organs and tissues can be donated? 7 2.4 Australia’s organ donation rates 7 • Tissue donation in Australia 8

3. Your presentation 9 3.1 Getting started 9 3.2 Step-by-step presentation 10 • Your introduction 10 • Presenting the facts 10 • Key messages and call to action 12 • Wrapping up 12 • Over to the audience – Questions and answers 12 3.3 Using the DonateLife PowerPoint presentation 13 3.4 Helpful tips 13 • Speaking at someone else’s event 13 • Staging your own event 14 • Approaching community groups and other organisations 15 3.5 Evaluating your presentation 15 • Self-evaluation form 16 • Speaker evaluation form 17

4. Commonly asked questions 18

5. Case studies 22

6. Background information about organ and tissue donation 27 6.1 Australia’s ‘opt in’ system 27 6.2 What is organ and tissue donation? 27 6.3 The difference between brain death and cardiac death 29 6.4 The donation process 29 6.5 Donor Family Support 30 6.6 Living donors and the Australian Paired 31

Kidney Exchange Program

7. Additional resources 32

8. National Reform Agenda and DonateLife 33 8.1 National Reform Agenda 33 8.2 DonateLife initiative 34 8.3 Organ and Tissue Authority 35 8.4 DonateLife contacts 36

contents


1. Introduction How to use the DonateLife Guide for Community Speakers The DonateLife Guide for Community Speakers is available to community organisations, volunteers and DonateLife Network staff to support community education and awareness activities about organ and tissue donation in Australia.

A nationally consistent approach to educating Australians, with clear key messages and accurate facts and statistics, is vital to building public confidence and empowering Australians to make informed decisions about organ and tissue donation.

The purpose of this guide is to enable you to deliver nationally consistent presentations within your community that provide people with the information they need to discover, decide and discuss organ and tissue donation.

The guide provides facts and statistics, information on support resources, answers to commonly asked questions and tips on how to make your presentation engaging and memorable. You can also refer to www.donatelife.gov.au for the latest news and information, as well as events taking place in your region.

This guide is a tool kit that can be referred to on an ongoing basis to adapt your presentations to suit your audience. This resource also aims to support the preparation of your presentations.

A CD with a PowerPoint presentation with speaking notes is included with this guide. We encourage you to use the PowerPoint presentation as provided or adapt it as appropriate for a particular audience. Sometimes you will be requested to use a PowerPoint presentation, and sometimes it will not be appropriate. The speaking points in the presentation can be used with or without showing the PowerPoint presentation itself. The resources in the guide ensure you are supported in both situations.

Training on presenting about organ and tissue donation is available through the DonateLife agencies, in partnership with community organisations, in each state and territory.

2. Let’s talk about organ and tissue donation

When it comes to educating Australians about organ and tissue donation, it’s important to know the facts to be able to confidently dispel prevailing myths and misconceptions and to answer the many questions people often ask.

Following you will find key facts and statistics to support your presentation. These facts, which are addressed in the accompanying DonateLife PowerPoint presentation, will enable you to confidently address many of the commonly asked questions.

A PowerPoint presentation with speaking notes is

included on the CD accompanying this guide.


2.1 Key facts and statistics

Australia’s organ and tissue donation rates � One organ and tissue donor can transform the

lives of 10 or more people.1

� Australia is a world leader for successful transplant outcomes.

� Around 1,600 people are on Australian organ transplant waiting lists.2

� To lift donation rates the Australian Government, with State and Territory Governments, has implemented a national reform package, ‘A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation’.

� The Australian Government funds dedicated doctors and nurses in 74 hospitals to work specifically on organ and tissue donation. These positions are part of the national DonateLife Network which also includes State Medical Directors, Organ Donor Coordinators and Donor Family Support Coordinators.

� In 2012, 354 organ donors gave 1,052 Australians a new chance at life.3

� The number of organ donors and transplant recipients in 2012 was the highest number since national records began.4

� Complementing the significant progress made in the clinical sector, Australia needs more active engagement and awareness within the community to increase Australia’s family consent rate.

� The Australian Government’s national reform agenda includes actions to increase clinical capacity and capability and to increase community engagement and awareness in relation to organ and tissue donation.

� In Australia the family will always be asked to confirm the donation wishes of the deceased before donation can proceed.

� The majority of Australians are generally willing to become organ (80%) and tissue (78%) donors.5

� Less than 60% of families give consent for organ and tissue donation to proceed.6

� The most important thing that helps a family’s decision is their knowing the wishes of their loved one.

� 44% of Australians do not know or are not sure of the donation wishes of their loved ones.7

1 Australian and New Zealand Organ Donation Registry (ANZOD) www.anzdata.org.au2 Australian and New Zealand Organ Donation Registry.3 Eye Bank Association of Australia and New Zealand (EBAANZ).

One organ and tissue donor can transform

the lives of up to 10 people.

At any one time there are around 1,600 people on

national transplant waiting lists.

4 Australian and New Zealand Organ Donation Registry. 5 Organ and Tissue Authority.6 Australian and New Zealand Organ Donation Registry.


� The majority of Australians (92%) that are aware of their family members’ wishes indicate that they would uphold those wishes.8

� The majority of Australians (81%) recognise it is important to discuss their donation wishes with the people close to them.9

� Nearly 2 in 3 Australians (58%) have had a discussion with their loved ones about their donation wishes in the past 12 months, with 81% indicating that the discussion was memorable.10

� 77% of Australians have now discussed their donation wishes with their family.11

� Every family making the decision about whether to agree to a donation proceeding is now able to receive dedicated support from DonateLife Donor Family Support Coordinators, whether or not donation proceeds.

� The quality of care for a potential donor at the end of his or her life, and the wishes of their family, is always the foremost consideration of those involved, and is never compromised by the potential for organ and tissue donation.

Community awareness and family discussionOur aim is to encourage all Australians to:

� Every family who consents to donation is entitled to receive dedicated support from a DonateLife Donor Family Support Coordinator, whether or not the donation proceeds.

� The quality of care for a potential donor at the end of his or her life, and the wishes of their family, is always the foremost consideration of those involved, and is never compromised by the potential for organ and tissue donation.

1 Australian and New Zealand Organ Donation Registry (ANZOD) www.anzdata.org.au2 Australian and New Zealand Organ Donation Registry.3 Eye Bank Association of Australia and New Zealand (EBAANZ).

7 Organ and Tissue Authority.8 National Community Awareness Survey, Woolcott Research, 2011. 9 National Organ Donor Collaborative.

10 National Community Awareness Survey, Woolcott Research, 2011.


2.2 Why we need to get Australians talking � The majority of Australians are generally willing to become organ (80%) and tissue

(78%) donors but less than 60% of families consent to donation.12

� One in three Australians who have not discussed their donation wishes are not confident in knowing how to start a discussion about organ and tissue donation with their family.13

� The most important thing that helps a family’s decision to consent to donation is knowing the wishes of the deceased.

� The ongoing national campaign is part of the Australian Government’s $151.1 million National Reform Agenda to establish Australia as a world leader in organ and tissue donation.

� Community organisations and other advocates, together with the DonateLife Network, play a critical role in extending the reach and impact of the ongoing national campaign by undertaking nationally consistent community education and awareness activities including community talks.

� Through these combined initiatives, we have the potential to save and transform many more Australian lives every year.

� Visit donatelife.gov.au for all the up to date information on organ and tissue donation in Australia.

. 12 National Community Awareness Survey, Woolcott Research, 2011. 13 National Community Awareness Survey, Woolcott Research, 2011.

In Australia the family will always

be asked to confirm the donation wishes

of the deceased before donation for transplantation can

proceed.

We’re proud our mum gave the gift of sight.

Perri & Jane’s mum, Julie, was a tissue donor. do

nate

life.

gov.

au


2.3 What organs and tissues can be donated?

Table 1. Types of organ and tissue that can be donated for transplantationORGANS TISSUE

KIDNEYS CORNEASLIVER HEART VALVESHEART PANCREAS ISLETSLUNGS SKINPANCREAS BONE

TENDONSLIGAMENTS

Living donors can also donate their femoral head when undergoing total hip replacements.

2.4 Australia’s organ donation ratesIn 2012, 354 organ donors gave 1,052 Australians a new chance at life.

For the most up to date data on Australia’s organ donation rates you can also refer to the following websites: www.donatelife.gov.au and http://www.anzdata.org.au/anzod/v1/indexanzod.html

Figure 1. Annual deceased organ donors and transplant recipients in Australia 2000-2012

0

10

20

30

40

50Organs transplanted per million populationTransplant recipients per million populationDonors per million population

15.6 48.446.411.3 39.037.1 14.0 44.742.8 15.1 46.645.2

2009 2010 2011 2012

Rate

per m

illion

popu

lation

Source: Australia and New Zealand Organ Donor (ANZOD) Registry (January 2013)


Table 2. 2012 transplanted organs in AustraliaOrgan Number

Kidneys 606Livers 230Hearts 72Heart/lung 4Lungs 144Pancreas 38Pancreas islets 4Intestine 1Total 1,099

Source: Australia and New Zealand Organ Registry (ANZOD) at www.anzdata.org.au Note: 1,041 organs were transplanted in 2011, benefiting 1,009 transplant recipients

Many people can’t get onto the waiting list because they have become so ill that it would be unsafe for them to undergo transplant surgery. Some who do get on to the waiting list will die before a suitable organ becomes available. This is why your help is so important in increasing Australians’ awareness about the need for increased donation rates and the life-saving and life-changing benefits of organ and tissue donation.

Tissue donation in AustraliaEye and tissue donation saves or improves the quality of life for recipients of eye and tissue donation.

Often when a loved one dies, it is too late for them to be an organ donor. However, they may still be able to donate eyes and tissue because the same time imperatives do not apply as for retrieval of solid organs. Tissue donation can assist with people who have been badly burned, such as in bushfires and accidents. It can also restore the gift of sight to people by replacing a cornea.


3. Your presentationPresentations that resonate best with an audience, and that keep their attention, follow a logical sequence and focus on a handful of key messages and a clear call to action – discuss your donation wishes with your loved ones.

Trying to include too many facts and statistics can overload your audience.

A successful presentation focuses on a few simple key messages and incorporates a question and answer session at the end to ensure that the audience has understood the facts about organ and tissue donation.

Key messages � Organ and tissue donors save lives. One organ and tissue donor can transform

the lives of 10 or more people.

� The people close to you need to know your wishes – in Australia the family will always be asked to confirm the donation wishes of the deceased before donation for transplant can proceed, even if the deceased had registered their wishes to become a donor. Families who know their loved ones’ donation wishes are more likely to uphold those wishes.

� All Australians need to: Discover the facts about organ and tissue donation;

Decide and register their informed donation decision on the Australian Organ Donor Register; and most importantly,

Discuss and know the donation wishes of family members.

� The call to action is for all Australians to discuss their donation wishes with family members and to know each other’s donation wishes.

3.1 Getting startedEffective planning will help reduce preparation time and ensure your presentation is tailored to your audience.

Some helpful steps in preparing your presentation are:

1 Understand your audience.

2 Plan your key messages. Three key messages are appropriate – discover, decide, discuss.


3 Utilise supporting DonateLife data to back-up your key messages including statistics, facts and any case studies you may want to share (drawing on your own personal experience, if appropriate).

4 Decide on the structure for your presentation – you could use the provided DonateLife PowerPoint presentation.

5 Anticipate questions and plan the answers in advance.

6 Rehearse, rehearse, rehearse – and make sure you run to time.

7 Organise support materials, such as the DonateLife-Australian Organ Donor Register brochure, to leave with your audience.

3.2 Step-by-step presentationHere’s a simple step-by-step structure that you can use to prepare your presentation.

Speaking points are also provided in the supporting DonateLife PowerPoint presentation as part of the DonateLife Guide for Community Speakers. You can adapt the PowerPoint presentation’s speaking points even if you are not using the actual PowerPoint as part of your community education talk.

i. Your introductionEstablishing your link to DonateLife and organ and tissue donation

� I am a member of [e.g. DonateLife Network/community organisation].

� Organ and tissue donation is a really important issue and it is something everyone in [community/club/school] is encouraged to start talking about.

� Today I am going to explain why it’s important for you to discuss organ and tissue donation with those close to you and why it is important that you know each other’s wishes.

Note: If you have a personal organ or tissue donation or transplantation story to share, include it in your introduction to highlight your direct link to the issue and knowledge.

Personalising your presentation can help to make it more memorable and engaging for the audience. You can do this by briefly sharing your own experience with organ and tissue donation and your motivation for raising awareness on this issue.

ii. Presenting the facts Focus on a few of the key facts outlined in section two (page 4). Choose those facts that you believe will be most relevant to your particular audience without overloading them with too much information.

To help choose the facts you might focus on in your presentation and the way that you deliver them, the following facts can be useful:

� In 2012, 354 organ donors gave 1,052 Australians a new chance at life.


� Around 1,600 people in Australia are waiting for a life-saving or life-changing transplant at any one time.

� You may think you are too old or unhealthy to be a donor. Or that your religion doesn’t support organ and tissue donation. These are common myths and misconceptions.

� Did you know that people need to die in very specific circumstances to be considered for organ donation, such as in an Intensive Care Unit or Emergency Department? About 1% of all hospital deaths occur in such a way that organ donation can be considered—this is why it is so important for families to know each other’s organ and tissue donation wishes, should the situation ever arise.

� Tissue donation does not have the same time imperatives for retrieval as solid organs. Tissue donation can assist with people who have been badly burned, such as in bushfires and accidents. It can also restore the gift of sight to people by replacing a cornea.

� In Australia, the family will always be asked to confirm the donation wishes of the deceased before donation for transplantation can proceed. The most important thing that helps a family’s decision is their knowing the wishes of their loved one. Yet 43% of Australians do not know, or are unsure of, the donation wishes of their loved ones.

Note: It is always a good idea to leave behind DonateLife brochures and fact sheets and to refer your audience to the www.donatelife.gov.au website which contains comprehensive information about organ and tissue donation. Materials you can leave behind with your audience helps them in knowing how to find out more information in their own time and they can also serve as useful ‘conversation starters’.

This man could save a life one day.He’s decided to be an organ and tissue donor.

To donate life, discuss it today. OK?


iii. Key messages and call to action � It’s important to make an informed decision about whether to become an organ

and tissue donor.

� When you have made an informed decision, it is important to register your decision on the Australian Organ Donor Register, which is Australia’s national register for organ and tissue donation.

� Although organ and tissue donation is a personal choice, it is a family decision. Please have a conversation about organ and tissue donation with your family. Make sure you know your family’s wishes and they know yours.

� I encourage everyone in [community/club/school/business] to:

iv. Wrapping upRepeating your key messages and call to action � Organ and tissue donors save and transform lives. You could transform the lives of 10 or

more people through organ and tissue donation.

� It’s important to discover the facts about organ and tissue donation to help make an informed decision about becoming a donor— the donatelife website www.donatelife.gov.au is the authoritative source of information on organ and tissue donation.

� Once you have made an informed decision about becoming a donor, it is important that you register your decision on the Australian Organ Donor Register.

� The most important thing you need to do to ensure your donation wishes are upheld, whether or not you register your decision, is to discuss your donation wishes with the people close to you. They will be asked to confirm your wishes should the situation arise.

� To donate life, discuss it today. OK?

v. Over to the audience – Questions and answers � Anticipate your audience’s questions and prepare your answers in advance.

� Familiarise yourself with the answers to commonly asked questions on page 18.

� If you don’t know the answer to a question, encourage people to visit the DonateLife website www.donatelife.gov.au where they will find all the facts or commit to following up the information for them. You might also offer to find out the information and send it to the relevant person.


3.3 Using the DonateLife PowerPoint presentationMany speakers use PowerPoint to support their presentations. A PowerPoint presentation for community education talks about organ and tissue donation is included in this guide. It includes speaking points to accompany the presentation.

You can personalise this presentation by including your name/organisation and logo on the front slide, and you may consider adding in 1-2 slides about the work you/your organisation do regarding organ and tissue donation.

While it is expected that you will personalise your presentation, and adapt it as appropriate for any particular audiences, the national DonateLife key messages, facts and statistics should not be altered without consulting with your local DonateLife agency as this information comprises nationally consistent and accurate information.

NOTE: As part of the Powerpoint presentation, the current DonateLife television commercial is embedded and you can play it by clicking on the slide. The PowerPoint presentation is on the accompanying CD in the folder ‘Powerpoint Presentation’. The television commercial file is also included in this folder. If you transfer the PowerPoint Presentation to your computer, you will need to copy the folder which contains both files—the PowerPoint presentation and the television commercial.

3.4 Helpful tips

Speaking at someone else’s eventIf you are speaking at somebody else’s event or meeting, remember preparation is the key to a successful presentation. After you have accepted an invitation to present, consider the following points:

� Know your audience in advance – who are you speaking to? What is their demographic, age range, knowledge about the topic? How many people are expected?

� Know the venue – where are you speaking? What is the room size/layout? What equipment do you have access to?

� Know the format – get the running sheet in advance. Are there other speakers? What will they be covering? How much time do you have? Make sure you leave time for questions and answers and that you tell your organisers that this is an important component.

� Help them introduce you – give them an outline about you, your experience and what you will present that can be used in any promotional materials and given to the MC to help him or her introduce you.


Staging your own eventIf you decide to host your own organ and tissue donation information session, plan well ahead and consider the following points:

� Identify an appropriate date and time – consider your audience and select a time that is most appropriate for them.

� Consider your venue – is it a suitable size; does it have adequate seating; is it heated, is there ample parking?

� Consider your talent – who will be speaking (just you or others?), possibly organise a master of ceremonies.

� What support materials would be of interest – you could provide the joint DonateLife-Australian Organ Donor Register brochures or you could download DonateLife Fact Sheets (see page 32). If you are going to deliver community talks on a regular basis, you can request copies of brochures from your community organisation, local DonateLife agency or the Organ and Tissue Authority (see pages 35–36).

� Prepare a running sheet – ensure your event keeps to time. An hour is a good time allocation for a community event, allowing time for arrivals, presentation, Q&As and an informal morning/afternoon tea or supper.

� Will you be providing refreshments? If so plan them in advance and assign someone to ‘catering duty’, you’ll also need to think about crockery, serving tables and rubbish bins.

� Advance bookings – If you want to take advance bookings, set up a bookings telephone number or email address.

� Make sure you promote your event well in advance – you could:

� write a letter or email to all your personal contacts

� send a notification to local press for their diary date (what’s on) sections

� contact the local newspaper and ask them if they would be interested in interviewing you and organising a photo to promote the event – if you have a personal donation or transplant story, make sure you share it with the editor

� send the event details to local churches and schools and ask for the details to be included in their newsletters

� prepare some promotional posters and ask local shops, your council and library to put them on display

� spread the word online – post information on the DonateLife website, ask your council to put it on their website, if you have a website post it on your home page

� ask your local DonateLife agency to help you to promote the event.


Approach community groups and other organisationsOnce you are confident and have received training in community presentations, you could let local community groups, workplaces and organisations know that you are available.

The following groups are often looking for new and interesting presenters who can speak about topical issues at regular meeting nights or as key note speakers at special events such as their AGMs:

� businesses – both individual organisations and local business associations

� churches of all denominations

� community groups – find out what groups might be operating out of your local community health centre or library

� health care providers – some proactive organisations and individual health professionals run regular information sessions and workshops for the community

� local councils

� retirement villages

� schools, especially secondary school aged

� Scout groups with Venturer (aged 15 to 18 years) and Rover (18 to 26 years) Sections

� service clubs such as Rotary, Lions, Zonta and special interest groups such as Probus

� sporting clubs.

3.5 Evaluating your presentation After you’ve presented and while the presentation is still fresh in your mind, it is worth taking the time to reflect on how you went.

You might like to use the self-evaluation form on page 16. It could help you think about things that went really well and even identify any areas that you might like to improve upon next time.

You will also find on page 17 an evaluation sheet that you might like to copy and hand out to your audience and learn from their feedback about how they responded to your presentation for your learning and development as a community speaker. Use your judgement as to whether it is appropriate to use the evaluation form at each presentation.

We would also welcome your feedback on the usefulness and content of the DonateLife Guide for Community Speakers at [email protected]


Self-evaluation formConsider how you performed in each of the following key categories and rate yourself:

Date

Venue

RATING FROM 1 – 5

(1=poor, 5= excellent)

Comments, feedback or areas for improvement

1.FIRST IMPRESSION Did your opening remarks get the attention of your audience?

2.STRUCTURE/FLOW Was your presentation format clear and did it flow from section to section?

3.VISUALS Did you use slides, video, props – how did the audience respond?

4.KEY MESSAGE/S Did you get your key messages across clearly?

5.

ENGAGEMENT Were you engaging – did you vary your voice to add colour/drama, did you use pauses for effect, did you um and ah, did you move and use gestures, how was your eye contact?

6.

AUDIENCE INTERACTION Was your audience actively asking questions? Did your audience want to approach you after the presentation?

7.

LAST IMPRESSION What do you think your audience felt after the performance? Have they taken your messages home with them?

Other comments:


Speaker evaluation formPlease provide your feedback on my presentation.

Date

Venue

RATING FROM 1 – 5

Comments/feedback/areas for improvement

1: strongly disagree, 2: disagree, 3: neither agree nor disagree, 4: agree, 5: strongly agree

1

Did you feel that the presentation and topic was relevant to you?

2.

Was the presentation informative in addressing some facts you were not aware of about organ and tissue donation?

3.

Did you receive sufficient information to make an informed decision about becoming an organ and tissue donor?

4.

Are you motivated to discuss your organ and tissue donation wishes with your family, and ask them about their donation wishes, after today’s presentation?

5.

If you have not yet decided and registered your donation decision on the Australian Organ Donor Register, are you motivated to now do so?

Other comments:


4. Commonly asked questions There are many myths and misconceptions when it comes to organ and tissue donation.

In your role as a community advocate for organ and tissue donation, you can expect to be asked about some of these myths during your presentations, especially during question and answer sessions.

To help you confidently answer questions and set the record straight, we’ve compiled a list of the most common questions and the simple facts.

Q: Organ and tissue donation is against my religion.A: All major religions support organ and tissue donation as generous acts that benefit

people. This includes Christianity, Islam, Buddhism, Hinduism and Judaism. If you are not sure whether your religion is supportive, speak to your religious adviser. You can also read or download a fact sheet on organ and tissue donation in relation to all the major religions at www.donatelife.gov.au

Q: I’m too old, too young or not healthy enough to donate.A: Almost any one can donate their organs and tissue. While your age and medical history

will be considered, you shouldn’t assume you are too old, too young or not healthy enough. There’s every chance that some of your organs and tissues will be suitable for donation. Only some medical conditions may prevent you from being a donor, such as transmissible diseases like HIV.

Q: My family won’t be able to view my body.A: Yes they will. The removal of organs and tissue is no different from any other

surgical operation, and is performed by highly skilled health professionals. The donor’s body is always treated with dignity and respect. The donation of organs and tissue does not alter the physical appearance of the body, and your family will be able to view your body and have an open casket if they wish.

Authorised by the Australian Government, Capital Hill, Canberra and the Victorian Minister for Health, Melbourne.

For more information visit donatelife.gov.au

To donate life know their wishes.Ask them today. OK?


Q: I’ve already registered. I don’t need to tell my family.A: You do need to discuss your decision with your family and friends, even if you have

registered on the Australian Organ Donor Register (or, in some states, on your driver’s licence). Donation won’t proceed without your family’s consent. Families are less likely to give consent for donation if they do not know the wishes of the deceased. That’s why every family is encouraged to discuss and know each other’s wishes.

Q: I’m not sure if I am registered.

A: You can check and update (or register) your details on the Australian Organ Donor Register at www.donorregister.gov.au, call 1800 777 203 or visit any Medicare office. In Australia you can donate your organs – heart, lungs, liver, kidneys and pancreas – and tissues – heart valves and pericardium, corneal and eye tissue, bone and related musculoskeletal tissue and skin tissue. You can record which organs and tissue you want to donate on the Australian Organ Donor Register.

Q: There won’t be any support for my family.A: The Intensive Care Unit team caring for you and the DonateLife Agency Donor

Coordinator and Donor Family Support Coordinator give the family as much support as they need during and after the decision to donate. Families considering organ and tissue donation will also have access to bereavement counselling.

The DonateLife Donor Coordinator will be the family’s initial point of contact from the time donation is first discussed. They provide the link between the family and the medical team and will help the family after the donation, particularly with arranging a private farewell and/or a viewing of the body, if the family wishes. The coordinator will contact the donor family with details of support offered in their state or territory. The coordinator can, if the family wishes, provide information on the outcomes of the donation and give details on how to write anonymously to the recipients.

Q: My organs and tissue will be used for research.A: Organ donation is about helping save or improve other people’s lives. Donated

tissue and organs will never be used for medical research unless explicit written permission is given by your family.

Q: Doctors won’t work as hard to save my life if they know I’m a donor.A: Not so. Medical staff do everything possible to save lives. Their first duty is to you and

saving your life. Organ and tissue donation will only be considered after all efforts fail and you have been legally declared dead.

In most cases, a person may only be able to donate organs where they have been declared brain dead in an intensive care unit in hospital. Brain death is when blood circulation to the brain ceases, and the brain stops functioning and dies with no possibility of recovery. A series of tests carried out by two independent and appropriately qualified senior doctors establishes that brain death has occurred.


People are sometimes confused about the difference between brain death and coma. Brain death is completely different from coma. A patient in a coma is unconscious because their brain is injured in some way, but their brain can continue to function and may heal. Medical tests can clearly distinguish between brain death and coma.

Organ donation may also be possible after a person’s heart has stopped beating, commonly referred to as donation after cardiac death.

A far greater number of people have the opportunity to donate tissue for transplantation. Tissue donation does not require the donor’s death to have occurred in the same limited circumstances as organ donation for transplantation to be successful.

Q: I don’t need to donate my organs because thousands of others do.A: Few people die in such a way that donation is possible. Organ donors must die

in hospital where their body can be medically supported until the organs can be donated. There are some 1600 Australians on national transplant waiting lists at any one time.

Q: People only need transplants because of bad lifestyle choices.A: Many people have an inherited genetic condition, a severe illness or disease

that will kill them, often at a young age. Common genetic conditions are cardiomyopathy (which affects the heart), cystic fibrosis (the lungs) and biliary atresia (the liver). Bones and associated tissue are used to treat spinal and joint deformaties, traumatic injuries from vehicle accidents, sporting injuries, and to replace bone destroyed by bone tumours. Corneal transplants restore sight to people following a disease or damage to their eyes. Heart valves are used to repair congenital defects in young children and replace defective valves due to disease such as rheumatic fever, degeneration and infection. Caderveric skin is of critical importance in the treatment of burn patients.

Q: Isn’t it assumed that I’m an organ and tissue donor unless I opt out?A: No. Australia operates on the ‘opt in’ system where you choose whether to be a

donor or not. If you have opted out by stating ‘no’ on the Australian Organ Donor Register, donation will not proceed. If you have signed ‘yes’ on the Register, or not registered at all, your family will still be asked to confirm your wishes.

Q: Can my family overrule my decision to be a donor?A: The family is always consulted about organ and tissue donation - if the family does

not give consent, donation will not happen. Families rarely overrule a person’s wishes if they know what they are. If you wish to be an organ donor, sign ‘yes’ on the Australian Organ Donor Register and discuss your decision with your family. It is more likely your family will respect your wishes if they know your decision.


Q. How long is the waiting time for a transplant?A: On average, people on the solid organ transplant waiting list must wait between

six months and four years – sometimes even longer. There are more eye and tissue donations than solid organs so the waiting time for eye and tissue transplants is shorter.

Q. What, if any, religions oppose it?A: The vast majority of religions support organ and tissue donation as generous

acts that benefit people, including Christianity, Islam, Buddhism, Hinduism and Judaism.

Q. How many recipients will benefit?A: One organ and tissue donor can transform the lives 10 or more people.

Q. I lived in the UK during ‘mad cow disease’ so I can not be a donor – is that right?

A: You may still be able to donate your organs but not your tissues.

Q. Will my family have to pay if I donate my organs or tissue?A: Absolutely not. There is never any charge for donating organs and tissues.

Depending on the hospital, your family might be charged for the cost of all final efforts to save your life and those costs are sometimes misinterpreted as costs related to organ donation. Your family will be responsible for your funeral expenses.

For more information visit donatelife.gov.au

To donate life know their wishes. Ask them today.

To save a life as an organ and tissue donor, you need to let others know of your wishes. You also need to know the wishes of those people close to you. Would you know what to say if you were asked ‘did they want to be an organ donor’?

Many Australians do not realise that, even if they have registered to be a donor, family consent will always be sought. The people close to you will be asked to give the final OK. That is why it is so important that, whatever you decide, the people close to you know your decision and you know theirs.

You may think you are too old or unhealthy to be a donor. Or that your religion doesn’t support organ and tissue donation. These are common myths and misconceptions.

Go to donatelife.gov.au to:

• Discover the facts about organ and tissue donation

• Become informed and Decide about becoming an organ and tissue donor

• Discuss your decision with the people close to you, and know each others wishes.


5. Case studies Story telling is an effective way of engaging your audience, especially if you are able to share relevant, human interest stories that they will be able to relate to.

Consider including one or two brief real life case studies in your presentation to help bring it and the DonateLife message to life.

If you have personally been touched by organ and tissue donation you may wish to share your story – share it but only to enhance rather than be the focus of your presentation. Remember that some audience members may find this topic very confronting (especially school groups), so just include a few relevant points to paint the picture.

Alternatively, you can also use any of the following real life case studies to add interest to your presentation – wherever possible consider the demographic of your audience in advance and select the story that is most likely to resonate with them.

You can find many more stories in the online DonateLife Book of Life: A collection of life-saving and life-changing stories from people touched by organ and tissue donation at www.donatelife.gov.au. The sharing of stories helps to normalise the subject of organ and tissue donation by showing the diversity of people whose lives have been touched by organ and tissue donation.

You can request a copy of the DonateLife Book of Life from your state or territory DonateLife agency to take with you to a community presentation. You might also like to submit your own story into the book and use your story as an example during your presentation.

Don

ateL

ife B

ook

of L

ifeAileen.

As a mother of three small children,

contracting glaucoma and nearly

losing my sight was rather traumatic. It

left us wondering how we would cope

raising a family and being able to give

them all that was necessary with limited

or no vision.

With expert medical care including trips

to the eye hospital, my sight was saved

and although far from perfect, being

able to raise a loving family and enjoy

our wonderful grandchildren has been

precious.

In October, I suffered a severe infection of

the right eye following surgery which was

necessary to control the glaucoma. The

infection could mean possible total loss of

vision and potentially the eye itself.

My eye went from what initially felt

like a minor irritation to oozing pus and

severe pain within 24 hours. My surgeon

commented when he first saw me that he

may not be able to save the eye, let alone

the sight.

But, due to the skill of my ophthalmologist

and donated sclera (the white of the eye),

I still have an eye and some sight.

I am ever so grateful for the care received

and particularly to the family of the

person who donated tissue enabling me

to still have sight and quality of life. What

a wonderful gift it has been to still be able

to see the smiles on the grandchildren’s

faces, to appreciate lovely scenery, to be

able to do housework and care for my

favourite roses.

My husband and I are registered organ

and tissue donors and our family are well

aware of our wishes. We urge others to

discuss organ and tissue donation and

make a positive decision to help someone

else in need.Aileen

Aileen’s story

Don

ateL

ife B

ook

of L

ifeWhat a journey our little daughter

Emma has had in her 18 months of

life. Born with Biliary Atresia there was no

other option but a liver transplant.

She deteriorated very quickly and she

was listed for transplant the week before

Christmas aged 5 months.

We moved our whole family to Sydney

for the transplant and my husband who

is a medical student, made the difficult

decision to postpone his studies.

Emma was seriously ill and we were all

so worried for her. One day I was sitting

with her while doctors again tried to take

blood from her with no luck, watching her

cry tears that were stained yellow from

the liver disease and at that point, I almost

gave up hope.

Later that night we got ‘the call’ that

Emma was going to get a second chance

at life.

That day, to us, is the ‘real’ start of her

life. Her transplant went very well and

we watched her slowly get stronger and

stronger and before we knew it she was

back home!

That first night back at home was such

a relief - we could actually fall asleep not

wondering if we would be taking her to

Emergency that night or not!

We have been very blessed that her

transplant was a success and she is

recovering well but the biggest blessing

of all has been the incredible gift that

a selfless family has given to complete

strangers.

At a very difficult and emotional time,

a family that we will never know has

changed our family’s life forever.

We have been registered organ donors

for a number of years, but I never, ever

imagined someone in my family would

need that precious gift!

Emma did not have any hope of surviving

her first year if not for her donor.

Please consider organ donation.

Emma’s mum

Emma’s story

Emma before and after her life-saving transplant.

Don

ateL

ife B

ook

of L

ife

Thank you

This is a special ‘Thank you’.

My name is Brad I am 47 years old and

when I was 6 years old I was diagnosed

with Type 1 diabetes.

I had a normal life with a loving family and

then my wife Lorae and I went to live in

Bateman’s Bay on the south coast of NSW.

In the mid 1990s the effects of Type 1

Diabetes started affecting my health.

I was diagnosed as legally blind and a

month later commenced dialysis.

In 2001 I had my right big toe amputated.

Then my left big toe was amputated and

following a slight stroke my left leg was

amputated at Canberra Hospital.

One day after my regular dialysis

treatment I had a phone call. There was

a Kidney-Pancreas waiting for me at

Westmead Hospital Sydney, donated by a

family who knew the wishes of their loved

one.

After 32 days at Westmead Hospital I

returned home return to a normal life and

I have been able to watch my family grow.

I will never ever forget the gift that saved

my life from a family I shall never meet,

but love and respect as my own.

However, due to the damage caused by

Type 1 diabetes my right foot and then leg

was amputated below knee.

In August 2007 we established the

Eurobodalla Renal Support Group and

Organ Donor Awareness and Education.

We are dedicated to providing community

awareness about Kidney health, Organ

Donation and Transplantation on the

NSW South East. We also host community

events and meet regularly at ‘get-together’

lunches.

Without strong support and love from

my family and a wonderful and generous

donor family somewhere in Australia who

had the very important talk about organ

donation, I would not be alive today. There

is just one thing left to say…..’Thank you’.

Brad

Brad and Lorae.

Don

ateL

ife B

ook

of L

ife

Annette suffered a cerebral

haemorrhage three weeks before

her 12th birthday. It was her wish that

her kidneys be donated if anything ever

happened to her.

Annette never knew that she was

Canberra’s first organ donor and that

there was no legislation in place to

retrieve organs in the ACT. It was Annette’s

wish that started authorities writing and

putting legislation in place for the ACT

and NSW.

It is hard to capture the true character

of Annette in writing, but it was obvious

to all those who knew her that she

was a very sincere, genuine, and a very

affectionate person who had an unusual

sensitivity towards the needs of others.

Annette loved her family and showed it in

many ways cooking, doing craft or looking

after her two cats.

Holy Spirit, enlighten and protect me from

evil and guide me to heaven where we

will rest in peace, Amen.

(One of Annette’s last offerings).

Annette

Annette—ACT’s first organ and tissue donor.

DonateLife Book of Life extracts that show life-saving and life-changing stories of those touched by organ and tissue donation and transplantation


BABY

At only five and a half weeks old Dane faced the first of many challenges; surgery to transplant a new aortic heart valve.

Dane’s valve had been eaten away by a bacterial infection. Several days after his life-saving surgery, Dane’s parents realised that the heart valve had come from another child.

“I was incredibly sad. I thought a child had died to save Dane’s life but a nurse explained to me that the child had died and afterwards the parents had decided to donate. It was the decision to donate that saved Dane’s life,” said Mum, Liv.

When he was two, Dane had a second valve transplant and he will need several more transplants before he is fully grown.

Dane is now four and is currently in a time of ‘bliss’ as his mother calls it — growing well, putting on weight and not on any medication. He is going well because of the generosity of a donor family who said ‘yes’ and donated their child’s heart valve.

CHILD

Eight year old son Lachy needed a liver transplant quickly or he would die. So urgent was the need that his Dad

was being tested as a living donor for his son. Then the call came through one night while the family was watching TV, telling them a liver from a deceased donor was available.

Lachy’s operation went well but complications afterwards meant that Lachy spent a month in intensive care. During that time he had a visit from his six year old brother Mitch who was shocked by how his brother looked - crying, Mitch said Lachy looked like a Transformer.

Today the two boys tussle and play like typical siblings – according to Mitch, the worst part about Lachy being sick was that they couldn’t play together, but the best thing is that they can now play together.

Lachy reckons he’s never felt better – he just wishes he could take his donor family out for a coffee to: “say thank you and tell them I’m going to take really good care of my new liver.”


YOUNG WOMAN

At 22, aspiring actress Heather wasn’t feeling well - tests revealed she had Eisenmenger’s Syndrome, a

rare condition caused by the combination of a hole in the heart and pulmonary hypertension.

Within days of being admitted to hospital, Heather was told she wouldn’t be able to have children and would need a double lung transplant.

Bed-ridden and with the disease progressing rapidly, Heather was sent to hospital for ‘a week of tests’ – but, just three days later she was in intensive care and not expected to survive. When she finally left hospital, she was advised to stay nearby until a suitable donor could be found – it was a wait of five months.

After a 12-hour operation to fix the hole in her heart and undertake the double lung transplant, she began her road to an ‘amazing’ recovery. Heather has returned to the theatre and now feels that her most important role is to enjoy every moment of the new life she has been given - and to live, laugh and sing in memory of a special donor she never knew.

YOUNG MAN

When Tim’s family received a leaflet about the number of people waiting for kidneys, the whole family said they wanted to sign up to be donors.

Tim’s mum, Margaret, hoped she would never have to put that discussion to the test, but, in 1999 Tim and a friend were in a horrific car accident. Police called Margaret who rushed to his bedside with family and friends.

Tim had severe head injuries and when Margaret realised that there was no chance of Tim recovering, she made the decision - in conjunction with Tim’s family and many friends - to opt for organ and tissue donation, as Tim would have wished.

“We knew Tim’s opinion on donation. He’d always said that they could take anything that could be used by someone else when he died, since he was not going to need it. It really was as simple as that to him. He had a big heart and would have done anything to help someone else,” Margaret said.

Tim’s organs were donated to a number of people waiting on the national transplant waiting list.


MOTHER

Julie and husband, Rob, had discussed organ donation before Julie was

diagnosed with adeno carcinoma, an aggressive form of cancer, in 2007. When chemotherapy proved unsuccessful, and with the knowledge that her organs ‘would not be of any use’, Julie remained determined to find a way to help others.

Julie’s corneas gave the gift of sight to two recipients: a man in his 30s and a man in his 60s. Her gift is particularly special because she was able to make her own conscious choice about donation, rather than leaving the decision to her family.

“Julie was very pragmatic and handled her illness very well - as best you could. She was very open with both me and the kids, telling us she thought it would have been a waste not to make the donation. She said ‘they are not going to be much use to me’,” said Rob.

MIDDLE-AGED WOMAN

Sue’s first heart attack, at age 51, came out of the blue. “When I was told a few months later that I needed a new heart, I was devastated – shocked,” she said.

After three heart attacks, an operation, two false alarms for a transplant, 10 months in hospital and a worsening condition, Sue began to think time would run out.

Then early one morning, the call came.

“Not a day goes by when I don’t think of the donor and their family. At every little milestone I celebrate – surviving 12 months, surviving 18 months – I’m wondering what that family must be thinking – 12 months since their loved one died, 18 months since they lost them,” she said.


MIDDLE-AGED MAN

Wayne, an active fireman, had an appointment with an ophthalmologist for

a sore eye. He thought that the doctor would give him some eye drops and he’d be on his way. Instead he was told he would probably lose his eye. He had an extremely rare fungus and little was known about how to treat it.

Wayne’s eye was eventually saved through intensive drug therapy and two corneal transplants. It was a shock when he realised that his corneal transplants had come from people who had died.

“There probably isn’t a day that I don’t think about my eye, and the two people who donated their corneas. Saying thank you is not enough for me, nowhere near enough.” His wife says that when she looks into Wayne’s eyes she sees the love and generosity of the donor and the donor family.

RETIREES

Judy and her husband Ian are a donor family and Judy is also

a transplant recipient. In 1986, after losing their son in a tragic accident, they didn’t hesitate when they were asked about the possibility of organ donation.

In a twist of fate, 12 years later, Judy needed a new kidney. A kidney infection at five months of age had left her with ongoing health issues, which worsened

after she had children. She was on dialysis three times a week and a donor kidney was her only hope. Thirteen months later, Judy received her new kidney and within five months, she had new energy levels and a new life.

When asked what message he would give to a person who was struggling with the thought of organ and tissue donation, Ian says, “How would you feel if your child needed a transplant? Would you be in support of it then?”


6. Background information about organ and tissue donation

6.1 Australia’s ‘Opt In’ SystemThe legislative framework for organ and tissue donation in Australia is described in state and territory human tissue acts. The Australian system is based on an informed consent or ‘opt in’ model whereby an individual provides express and informed agreement to donate organs and tissues upon their death.

In Australia, doctors always seek the consent of families before proceeding to donation. Doctors have an ethical obligation to ensure that donation will not cause ongoing and undue distress to family members and to confirm the deceased’s donation wishes if known.

In 2005, the Australian Organ Donor Register became a register of consent, allowing those individuals willing to donate their organs and tissues to register their legal decision. As at 10 July 2012, over 5.8 million Australians have signed onto the Register as organ and/or tissue donors.

While the recording of an intention or consent to donate on the Register provides important information that can assist hospital staff and the donor’s family understand and respect the donor’s wishes, the donor’s family is still always asked to consent to donation proceeding.

It is incorrect to say that countries with an ‘opt-out’ or presumed consent model such as Spain have a better donation rate because of the ‘opt-out’ system. The fact is even in countries such as Spain donation is still discussed with the family and any wishes of the family for donation not to proceed are respected, just as they are in Australia.

6.2 What is organ and tissue donation? � Organ and tissue donation involves removing organs and tissue from someone

who has died (a donor) and transplanting them into someone who, in many cases, is very ill or dying (a recipient). The donation can save the life or significantly improve quality of life for recipients.

� In Australia, most donations occur when a person is declared ‘brain dead’. Brain death occurs when the brain is so badly damaged that it permanently stops functioning, usually because of bleeding in the brain, a stroke, infection or severe head injury.

� A series of tests carried out by two independent and appropriately qualified senior doctors establishes that brain death has occurred. These doctors are different from these who would conduct transplantation, should it occur.


� Brain death is completely different from coma. A patient in a coma is unconscious because their brain is injured in some way, but their brain can continue to function and may heal. Medical tests can clearly distinguish between brain death and coma.

� Another method of organ donation is called Donation after Cardiac Death (DCD).

� Potential DCD donors are patients in the Intensive Care Unit (ICU) who are so sick that they have no chance of survival without ongoing artificial ventilation or life support, and it is expected that they will not survive for longer than 90 minutes when life support is withdrawn. Care and respect is always maintained during the end-of-life process.

� A far greater number of people have the opportunity to donate tissue for transplantation. Tissue donation does not require the donor’s death to have occurred in the same limited circumstances as organ donation for transplantation to be successful and may be retrieved up to 24 hours after death, and stored for up to five years.

Family discussion kit

The Family Discussion Kit can be downloaded from www.donatelife.gov.au/discussionkit.html


6.3 The difference between brain death and cardiac death

In a patient who has lost all brain function, the blood is still circulating to organs other than the brain. In this situation there is usually sufficient time to organise organ donation. This allows the family to spend more time with the patient who has died, before the organ donation operation takes place.

In donation after cardiac death, however, it is important to start the operation as soon as possible after death has been determined. This is because the heart is no longer pumping blood to the organs, and if this time is too long, the organs may not work properly after they are transplanted.

Tissue donation can occur after the time has expired where organs may be donated.

The National Protocol for Donation after Cardiac Death is available on the DonateLife website together with a Plain Language Statement and Questions and Answers. For more information visit http://www.donatelife.gov.au/The-Authority/National-Protocol-for-Donation-after-Cardiac-Death.html

6.4 The donation processWhile each situation may vary slightly, the following donation process generally takes place:

� When a person dies in a situation where they can be a donor, their family is asked to give their consent for donation and then asked to complete the necessary paperwork to confirm the donation.

� A DonateLife Donor Coordinator is assigned to the family immediately. This person will be their key liaison point throughout the donation process.

� The donor’s medical and social history is then established by the donor coordinator in conjunction with the family and donor’s medical records. The donor’s GP might be contacted for further information.

� Medical tests are undertaken to ensure the organs are suitable and match the organ/s to a potential recipient/s.

� Following the tests, the DonateLife Donor Coordinator consults with organ transplant teams across Australia to match the donor with compatible recipients.

� Once a match is confirmed the potential organ recipient will be contacted by their transplant unit and admitted to hospital to wait for the gift of a transplant.

� The retrieval teams travel to the donor’s hospital to retrieve organs and tissues.

� The teams performing retrieval surgery are completely different from the medical team that tried to save the life of the deceased donor in the Intensive Care Unit to avoid any possible conflict of interest.


� They treat the donor’s body with the utmost dignity and respect, closing the single incision as in a normal operation and using prostheses if bone or eyes have been removed to ensure that the body looks unchanged when the donor’s family see the body for a final goodbye.

� In every case, the donor’s family can make normal funeral arrangements, including an open casket if desired.

� Once the organs have been retrieved, they are immediately transported to hospitals where the recipients are waiting. Police escorts are often used due to the need for urgent delivery and transplantation. Recipients receive organs and tissue on a strictly managed clinical allocation process.

� Donated tissues are processed and stored for transplantation at eye and tissue banks. Corneas need to be transplanted within a week.

6.5 Donor family support � The DonateLife Donor Coordinator will be the family’s initial point of contact from

the time donation is first discussed.

� The Donor Coordinator provides the link between the family and the medical team. They provide the family with information to help them in making their decision regarding donation. The Donor Family Coordinator will then complete all the required documentation and liaise with the relevant authorities, organising the referral and matching of organs to people waiting for a transplant.

� After the donation surgery, the family can view their loved one if they wish and receive information on donor family support, including resources and counselling to support them through their bereavement.

� DonateLife Donor Family Support Coordinators offer support for all families whose next of kin are identified as possible donors, whether or not the donation proceeds.

� Arrangements can also be made for donor families and transplant recipients to write anonymous letters to each other through their respective DonateLife agency and transplant units. This process remains anonymous by law to ensure privacy is maintained.

A collection of life-saving and life-changing stories from people touched by organ and tissue donation.

Front cover

The DonateLife Book of Life includes many life-saving and life-giving stories from people touched by organ and tissue donation.


6.6 Living donors and the Australian Paired Kidney Exchange Program

� Living donors can donate a kidney or part of their liver, while they are still alive.

� Most living donors are relatives or close friends of the recipient. This is known as directed donation.

� The Australian Paired Kidney Exchange (AKX) Program is an initiative of the Organ and Tissue Authority and is based on the paired kidney exchange program developed in Western Australia, with the aim of increasing options for live kidney donor transplants by identifying matches for incompatible donor-recipient pairs.

� The AKX Program increases live donor kidney transplants by identifying biologically incompatible donor-recipient pairs and matching them with other incompatible donor-recipient pairs. Exchanging donors creates two compatible matches.

� The AKX Program uses a computer program to match donors and recipients who have registered for the Program, to look for combinations where the donor in an incompatible pair can be matched to a recipient in another pair. If the computer finds a compatible match, two or more simultaneous transplants can occur by exchanging donors.

� To learn more about the AKX Program visit: www.donatelife.gov.au/AKX


7. Additional resources donatelife.gov.au For up to date and relevant information, bookmark the DonateLife website: www.donatelife.gov.au and revisit it regularly to keep updated on the latest developments. This information can be used by you to support all your community education efforts.

Handy materials housed on the site include:

� Updated facts and statistics

� A suite of DonateLife Fact Sheets

� A downloadable Family Discussion Kit with suggestions to help families start a memorable conversation about organ and tissue donation

� The latest news and press releases

� A regular DonateLife newsletter for the sector

� Information on DonateLife events being held around the country

� The DonateLife Book of Life: A collection of life-saving and life-changing stories from people touched by organ and tissue donation and other stories of hope for case studies

� Web links to credible Australian organisations involved in organ and tissue donation

� Copies of the ‘DonateLife, discuss it today. OK?’ television commercials and campaign material.

DonateLife fact sheetsDonateLife Fact Sheets can be downloaded and used as reference material or given away as handouts for your presentations. The Fact Sheet library can be accessed in the Resources section on www.donatelife.gov.au.

To donate life...

know their wishes.

Donation myths

Organ donation is against my religion.

Reality:

Most religions support organ and tissue donation as generous

acts that benefit people. This includes Christianity, Islam,

Buddhism, Hinduism and Judaism. If you are not sure whether

your religion is supportive, speak to your religious adviser. You can

also read or download a fact sheet on organ and tissue donation

in relation to all the major religions at www.donatelife.gov.au

I’m too old, too young or not healthy enough to donate.

Reality:

Almost any one can donate their organs and tissue. While your

age and medical history will be considered, you shouldn’t assume

you are too old, too young or not healthy enough. There’s every

chance that some of your organs and tissues will be suitable for

donation. Only some medical conditions may prevent you from

being a donor, such as transmissible diseases like HIV.

My family won’t be able to view my body.

Reality:

Yes they will. The removal of organs and tissue is no different

from any other surgical operation, and is performed by highly

skilled health professionals. The donor’s body is always treated

with dignity and respect. The donation of organs and tissue does

not alter the physical appearance of the body, and your family will

be able to view your body and have an open casket if they wish.

I’ve already registered. I don’t need to tell my family.

Reality:

You do need to discuss your decision with your family and friends,

even if you have registered on the Australian Organ Donor

Register (or, in some states, on your driver’s licence). Donation

won’t proceed without your family’s final consent. Families are

less likely to give consent for donation if they do not know the

wishes of the deceased. That’s why every family is encouraged to

discuss and know each other’s wishes.

To donate life...

know their wishes.

Discussing donation

Decided about becoming an organ and tissue donor?

Everyone has their own reasons for deciding whether to become

an organ and tissue donor. It is important that the people close

to you understand those reasons. Your family need to know your

decision because they will be asked to give the final consent.

Families that know each other’s donation decisions are more

likely to uphold them. Families that do not know the wishes of

the deceased are much less likely to agree to donation.

You may think you are too old or unhealthy to be a donor. Or that

your religion doesn’t support organ and tissue donation. These

are common myths and misconceptions.

Discover the facts about organ and tissue donation. This will help

you make an informed decision about whether to become an

organ and tissue donor. You can register your decision online at

the Australian Organ Donor Register (www.medicareaustralia.gov.

au), call 1800 777 203 or complete a form at any Medicare branch.

You still need to discuss your decision with your family.

When is a good time to start a family discussion?

Today. You can use every day situations to start a discussion on

important life issues, including what to do with your organs and

tissues when you die. This might include:

The next time your family sits down together for a meal

Making a will or advanced health directive

Getting life insurance or income protection

Leaving home for the first time as a young adult

Getting or renewing your driver’s licence

Celebrating an anniversary with your partner

Having a significant birthday: 21, 30, 40, 50 or more

Getting a check-up at the GP

Hearing about someone who has been a donor, needs a

transplant or has had a transplant

To donate life...

know their wishes.

Donation facts and statistics

One organ and tissue donor can save up to 10 lives and

improve the lives of many more.1

91% of Australians agree that organ and tissue donation has

the potential to save and improve lives.2

Australia is a world leader for successful transplant outcomes,

yet has one of the lowest donation rates in the developed world.

Around 1700 people are on Australian organ transplant

waiting lists.3

On average, people on the transplant list can wait between

6 months and 4 years.4

To lift donation rates the Australian Government, with State

and Territory Governments, has implemented a national

reform package, ‘A World’s Best Practice Approach to Organ

and Tissue Donation for Transplantation’.

The initial focus for reform involved reform of the hospital

system in terms of identifying potential donors. To do this,

the Australian Government funded 160 dedicated doctors

and nurses in 76 hospitals to work specifically on organ and

tissue donation. These positions are now in place, as part

of the national DonateLife Network which also includes a

further 82 staff such as State Medical Directors, Organ Donor

Coordinators and Donor Family Support specialists.

In 2010, 309 organ donors gave 931 Australians a new

chance in life.5

The number of organ donations in 2010 was the highest

rate in Australia’s recorded donation history.6

Complementing the significant progress made in the

clinical sector, Australia needs more active engagement and

awareness within the community to increase Australia’s

family consent rate.


8. The National Reform Agenda and DonateLife

8.1 National Reform AgendaThe aim of the Commonwealth-funded $151.1million National Reform Agenda, A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation, is to: increase capability and capacity within the health system; and to build community awareness and stakeholder engagement accross Australia to promote organ and tissue donation.

The National Reform Agenda is built on international best practice and experience, together with the findings of the National Clinical Taskforce on Organ and Tissue Donation, the expertise and recommendations of the Transplantation Society of Australia and New Zealand and a number of other stakeholders including clinical and community representatives.

The Council of Australian Governments endorsed the reform package on 3 July 2008 and agreed that the Commonwealth would lead implementation in partnership with states and territories.

The nine measures of the National Reform Agenda aim to establish Australia as a world leader in best practice organ and tissue donation for transplantation and to achieve a significant and lasting increase in the number of life-saving and life-transforming transplants.

The nine measures of the reform package are:

Measure 1 A new national approach and system—a national authority and network of organ and tissue donation agencies

Measure 2 Specialist hospital staff and systems dedicated to organ donation

Measure 3 New funding for hospitalsMeasure 4 National professional education and awarenessMeasure 5 Coordinated, ongoing community awareness and educationMeasure 6 Support for donor families

Measure 7 Safe, equitable and transparent national transplantation process

Measure 8 National eye and tissue donation and transplantation network

Measure 9 Additional national initiatives, including the Australian Paired Kidney Exchange program.

For more information on each measure, visit: www.donatelife.gov.au/The-Authority/Worlds-Best-Practice-Reform-Package.html


8.2 DonateLife initiative � DonateLife is the national name and brand for organ and tissue donation for

transplantation in Australia.

� The DonateLife Network and brand was launched in November 2009 as part of the Australian Government’s National Reform Agenda, A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation.

� The national ongoing DonateLife campaign, which is part of the national community awareness and education program (Measure 5), was launched in May 2010.

� There is a national DonateLife Network of dedicated doctors and nurses in 74 hospitals across Australia (as at 10 July 2012). These positions are part of the national DonateLife Network which also includes State Medical Directors, Organ Donor Coordinators and Donor Family Support Coordinators.

� The work and direction of the DonateLife Network is driven by the Organ and Tissue Authority, which was established as part of the National Reform Agenda to oversee, implement and monitor national initiatives and programs to achieve a lasting and sustainable increase in organ and tissue donation rates.

� The Organ and Tissue Authority also works in close partnership with community groups involved in organ and tissue donation and transplantation in Australia.

� The DonateLife National Communications Framework and Charter guide the national community awareness and education effort. These documents provide the platform for a consistent and coordinated approach to enabling Australians to discover, decide and discuss organ and tissue donation for transplantation.

� Through the National Communications Charter, all community groups and organisations working within the organ and tissue donation sector have made an undertaking to work together to increase the rate of organ and tissue transplantation in Australia by providing accurate, consistent information to the community through a coordinated, national communications framework to ensure an informed, confident community.

� The list of Charter signatories and links to community organisations can be found at: http://www.donatelife.gov.au/The-Authority/Our-sector/Community-organisations.html


8.3 Organ and Tissue Authority � The Organ and Tissue Authority was established in January 2009 under the

Organ and Tissue Donation and Transplantation Authority Act 2008, as part of the Australian Government’s new National Reform Agenda, A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation.

� The Authority’s objective is to: increase capability and capacity within the health system; and to build community awareness and stakeholder engagement accross Australia to promote organ and tissue donation.

� Its vision is for Australia to lead the world in organ and tissue donation and transplantation outcomes.

� Its mission is to develop, build, monitor and improve national networks and systems for clinical practice, education and data analysis, and to build community awareness to improve family consent rates for organ and tissue donation.

Organ and Tissue Authority Level 6, 221 London Circuit

PO Box 295 Civic Square ACT 2608

Phone: (02) 6198 9800 Fax: (02) 6198 9801 Email: [email protected]


8.4 DonateLife contactsAgency Address Contact details

ACT

DonateLife ACT The Canberra Hospital PO Box 11 Woden ACT 2606

Phone: [02] 6174 5625 Fax: [02] 6244 2405 Email: [email protected]

NSWDonateLife NSW 4 Belgrave Street Kogarah NSW 2217


NT

DonateLife NT Dept of Health and Families 1st Floor Royal Darwin Hospital Rocklands Drive TIWI NT 0810


QLD

DonateLife QLD Building 1 Level 4 Princess Alexandra Hospital Ipswich Road Woolloongabba QLD 4102


SADonateLife SA Level 6, 45 Grenfell Street Adelaide SA 5000

Phone: [08] 8207 7117 Facsimile: [08] 8207 7102 E-mail us: [email protected]

TAS

DonateLife Tasmania Hobart Corporate Centre Level 3 Macquarie Street Hobart TAS 7000


VIC

DonateLife Victoria Level 2, 19–21 Argyle Place South Carlton VIC 3053

Phone: [03] 8317 7400 Inquiry Line: 1300 133 050 Fax: [03] 9349 2730 Email: [email protected]

WADonateLife WA Suite 3, 311 Wellington Street Perth WA 6000


www.donatelife.gov.au

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