ShareLife Blog

Increasing organ and tissue donor registration numbers does not increase actual donor rates.

Sunday, November 03, 2013

ShareLife Australia

Today, The Sunday Telegraph has launched a campaign in collaboration with Pride of Australia medal winner, Will Chapman, to address low rates of organ donation in Australia and to shed some light on the facts. It is important to hear the stories of those who are waiting and in need of a transplant. The sad truth is that many die waiting.

Often the public is led to believe that the answer to increasing the number of organ donors is as simple as increasing registration numbers. This is not the case. There is, however, a direct correlation between expertly trained staff working as donor coordinators in hospitals and the positive impact this has on organ donor identification and consent rates.

Over 90% of Australians support organ donation and more than five million are registered donors. We have dedicated experts working across the country and excellent transplant outcomes in Australia.

Australia's organ donor numbers have improved over the last year and this is good news. Twice as many transplants occur per capita in many other countries. Australia is currently ranked 21st in the world based on number of deceased organ donors per capita. There are no significant or relevant disparities between the number of people who could be potential donors in Australia and the numbers in countries that have much higher rates.

In 2012 there were 15.6 donors per million people in Australia. In the USA there were 26 dpmp and in Spain, the world leader, there were 35.6 dpmp.

The key is to improve identification and consent rates. This is successfully achieved when a nationally coordinated system is in operation and hospitals are given the resources and the world's best practice system to model changes on.

The community will is there. The federal government funding is there. Since 2009 $40 million has been allocated each year. In 2008 there were 846 recipients who received organs from deceased donors. Last year there were 354 deceased donors and 1052 transplant recipients in Australia.

We must ensure that this opportunity to save many more lives is realised. The Spanish lead the way, many countries are following. We must remain focused on what is possible and continue to strive for world-leading organ donation and transplant numbers. 

It's also important to take this opportunity to recognise and thank Australia's donors and donor families and also to thank those who may have wanted to donate but have not had the opportunity.

The power of the’ick’ factor in organ donation.

Thursday, October 03, 2013

By Assistant Professor Holly Northam

Holly is a director of ShareLife Australia and a leading figure in the organ and tissue donation sector in Australia. Her full bio is here. This article first appeared in Nursing Review.

Over the last few weeks a number of incidents in the public sphere have highlighted the problem of callous, inaccurate and insensitive representation of organ donation. The BBC faced strong complaint and approbation from the NHS for its depiction of organ donation in a recent television drama. In Australia last week a television program aired which presented a case of a death and subsequent organ donation. This program created outrage amongst nursing colleagues and those who are awaiting organ transplantation for its poor portrayal of organ donation and nurses. A strongly voiced view from my colleagues was that the outcomes could negatively colour the organ donation views of those who viewed the episode. This event coincided with a discussion about the release of a new book by a liver transplant surgeon aimed for public consumption, displayed in the new books section of a public library and picked up by a family member of an organ donor. This book was passed for review to Donor Families Australia. The donor family members were deeply distressed by insensitivity displayed in the portrayal of the organ donation surgical process and the apparent relegation of the donor to a vessel for organs.

A real anxiety about organ donation held by many in our community is sometimes referred to as the ‘ick’ factor and includes the idea of bodily mutilation, disrespect for the grieving family and confusion about the terminology and determination of death. The organ donation sector describes these fears as the ‘myths’ of organ donation. These fears and uncertainties are known to intrude and sometimes strongly influence the decision making process of people contemplating their own or their relatives’ death and organ and tissue donation decision. Despite an increase in the number of organ donors in Australia since the introduction of funding to facilitate the clinical requirements of organ donation, 2013 figures indicate around 45% of families still decline the request for donation, a figure that remains effectively unchanged across the last decade. For this reason Australia still lags well behind most developed countries in organ donation rates with a rate half that of Spain who has the highest donation rate, and seeks family consent for every donation despite its Opt out scheme. It is possible that despite the altruistic character of Australians and a willingness to support the idea of organ donation; many of us carry a subconscious hesitation to agree to organ or tissue donation underpinned by distrust in the process.

I am saddened that despite the general acknowledgement in the public conversation in Australia that we should increase our organ donation rates with calls for opt-out legislative frameworks to over-ride the influence of families in the decision making process ; many thought leaders remain amazingly insensitive to the impact they have in influencing the organ donation decisions of the community. People who include not only those who may be required to make a decision in the future about organ donation; but also grieving donor families who, having made a decision to donate, benefit from affirmation for what is often a harrowing experience.

The experience of empathy and compassion contribute to the trust and hope which is essential for families to make a decision to donate, and for our community to expect to donate as a normal part of end of life care. Families need to have the trust that their relative will be cared for and honoured and that their grief will be acknowledged. They need to have hope that their decision respects their loved one's wishes, and is validated with care for their loved one throughout the donation process. They require validation for their decision and acknowledgement of their gift.

We cannot blame families for declining to donate their loved one's organs when their first need to is protect and care for them and their bodies. The only place families can obtain information about organ donation processes in Australia is from the media and information in the public domain, and this is what they use to inform many of their decisions. This leaves the hospital staff with the difficult task of not only providing excellent care and communication in every facet of the patient journey, but it also requires skilled expertise to fully educate a grieving family about the organ donation process. For most people this is new and complex information, and is difficult to assimilate through the veil of emotion, shock and sleep deprivation.

There are no authoritative standardised public education resources available in Australia about what it is like to go through the experience of donating your relative's organs, and what families should expect when faced with the decision. Until there is, it is beholden for us all to consider the impact of our words and their power. An interesting comment from a participant in a study I am conducting (who declined donation) was "- so much for the recipient but nothing for the donor".

Please consider a more thoughtful approach to the way we represent organ and tissue donation in public and professional  communication. It has ramifications. For example, there were only four heart/ lung donors in Australia in 2012. The number of patients who die on the waiting list or are removed from the waiting list when dying are not published. Anecdotally the numbers are significant. I am sure it must be heart breaking to be waiting for a transplant and to be aware of the possible impact of this insensitivity. Importantly, please consider how your family would feel if asked to donate a loved one's organs because in truth if can happen to any of us at any time.

Waiting to live.

Thursday, June 27, 2013

Kerri Cargill is a registered nurse and is used to caring for others, in fact it's what she loves to do. This month Kerri is marking one year since she began a leave of absence from work and seven months on the organ transplant waiting list. In this article she writes of the harsh realities and of the golden moments that punctuate her wait.

I wrote this in the early hours of morning when sleep would not come. It is not a unique story, nor earth shattering in any way.  It is not always grammatically correct! It is just a summary of my experiences over the past year. I have decided to share this with ShareLife Australia and my friends in the hope it will encourage you to discuss organ donation with your family and friends.

June 14 was one year to the day that I had to leave work. It was a day of sadness and tears when I realised I was no longer well enough to be at work. At first I told my boss I would "just be off for a couple of days". Then I told her I needed a few weeks ... a few months ... and now it has been a whole year!  When, or if ever, I will be well enough to return to my grad program job and the profession I love is a question no one can answer for me - it is in God's hands!

It has been a roller-coaster year.  A tough, emotional, confronting year in so many ways...

Leaving work was tough. I had a job that I had worked hard over many years to establish and was totally committed to.  It sounds uncool and oh so cliched but I often told family and friends that I was in the job I was born to do - I loved it that much!  A lot of my personal and professional identity - who I was - was defined by my job.  To leave my professional role, therefore hurt a lot. For months I dreamt most nights of being back at work and would wake up crying when I realised this was impossible.  It took me seven months to stop buying work clothes!  Occasionally I would visit my workplace to say hi to colleagues, who were always very happy to see me, however that also filled me with sadness and
an overwhelming anxiety as I would inevitably wonder if I would ever return.  

The sense of shock, loss and chaos that follows sudden, irreversible deterioration of a long term condition is immense. My congenital heart condition & pulmonary hypertension had been stable for nearly ten years. I knew things may go wrong someday but had always hoped it wouldn't happen to me. Plus someday may never come ... Or so I thought!  Anyway, within four months of becoming unwell, a few hospitalizations, quite a few scares I was now attached to oxygen 18 hours a day. I was urgently referred to the heart/lung transplant unit at Sydney's St Vincent's hospital.  It seems I needed a double lung/heart transplant to survive.  Without one, my cardiologist gave me 12 to 18 months to live.

Referral to a transplant unit is both a relief and a huge scare. Meeting the team for the first time is an 'event' - a nerve racking event. That's only the very beginning as the work up for transplant list is exhausting and all consuming.  I travelled to Sydney every week for six weeks for one or two days of medical tests.  When I wasn't in Sydney I was attending medical appointments at home.  With every test, appointment or intervention, we held our breath hoping for 'normal' findings and worried that I would not 'pass' that stage of work-up.

Thankfully I got through all the assessments with no surprises. The final stage of transplant work-up is a meeting with the surgeons. This is BIG as they have the final say as to whether you are listed. This is because surgeons must be confident they can technically do the transplant. It makes sense - if they can't match your unique anatomy with a donor's organs - transplantation is impossible.   The sense of relief & evaporation of anxiety when you 'make' the list is enormous & we celebrated!

And then the waiting begins ...

Of course, every cloud has a silver lining and it turns out that my lining is in fact golden. Golden because I am blessed with extraordinary family and friends who have been there to love, care & support through the tears and laughter, fear and hope.

My family's incredible strength, love and wisdom has enveloped me every single minute of every day. They are steadfast in their focus of getting me to transplant day as healthy as possible.  They are my anchor when things get tough and my compass when I feel lost. No matter what happens they are resilient and positive.  My two young nieces take all the 'medical stuff' in their stride and treat me just the same as before - I love that! They never miss an opportunity to tease and make me laugh. Our extended family and close family friends have also provided fantastic support and will do anything - absolutely anything - to help out.

And friends - fabulous, kind, generous friends who regularly keep in touch and show they care. Real friends who are never "too busy" to call or visit or even just text.  Their spirit of generosity, care and love makes a difference - a huge difference - to my wellbeing.  When I am too sick to go out they come, sit by my bed and share stories and laughter. It is because of these wonderful friends I still feel like I belong somewhere, can still make meaningful contributions to their lives, that I am of value and can retain a sense of being the real Kerri - not just the girl waiting for a heart/lung transplant.

And sometimes my colleagues or even complete strangers have made me smile. So often it is the little acts of kindness that can lift spirits - never, ever underestimate the impact of being kind!

I am not alone! There are thousands of Australians on the organ transplant waiting list right now.  Sadly, our organ donation rate is not world's best - nowhere near it.  I have been on the waiting list nearly seven months and have been told to prepare for a long wait ... maybe a year or more. 

I think about everyone on the waiting list often and wonder if they (like me) sometimes question "Am I waiting to live or am I waiting to die?" because that's what it feels like.  At times I feel so desperate for the phone to ring & hear the transplant coordinator's voice.  At other times I am overwhelmed with gratitude that I have a chance at a second chance. I am so aware that not everyone gets this amazing opportunity.  

However, I am mostly VERY optimistic that I will get new heart/lungs and I often day dream about what my life will be like when I am healthy & can breathe easily!  It's going to be fantastic!  As my friend, Will Chapman says  "... any day now." 

So while I wait and milestones like this pass, I am filled with gratitude for the golden lining to my little cloud ... family, friends, love, kindness, laughter, resilience and hope for the future ... the very essence of life. Xx

Strangers on a shared road - a recipient's mum says thank you to donor families this Christmas.

Monday, December 24, 2012

Will Chapman is 20 years old. In June he launched a YouTube video. He said: "I'm living with heart and lung failure. Without a heart and double lung transplant I won't make Christmas." The video has garnered over 25,000 views. More than 10,000 of those in its first week. Will knew that there were are many people across the country facing the same "lottery" because there are far fewer organ donors than waiting recipients. Each donor can save or transform ten lives.

Will's family moved from their home in a coastal town to be close to hospital. The family's lives uprooted, waiting and hoping for "a gracious gift". Some of the mates Will made along the way died waiting. Thankfully, Will is with us this Christmas ten weeks after receiving a double lung and heart transplant. He is spending Christmas by the sea with his family and he is building his strength back up. In this blog post, his mum, Julie Chapman writes about her family's experience and their gratitude to a family they do not know.


The Chapman Family


Strangers on a shared road

My name is Julie Chapman. I feel we have been blessed, as successful organ donation and transplantation has allowed us to finally move home to paradise, where we will celebrate Christmas, and a future, together.  For many agonising months I had to quell insatiable fear, fuelled by the very real possibility my 20 year old son, Will could die waiting. We desperately tried to remain positive despite being told by numerous specialists candidacy would be tough as Will needed multiple organs and a donor shortage existed. 

Words expressing the roller coaster of emotions are inadequate. Now is not the time. As I write I weep, a year’s stored tears shed not for us but for a boy who won’t spend Christmas with his family ever again. Whoever Will’s donor family is, I hope you find some consolation your son’s heart beats strong in Will’s chest, his lungs give Will life sustaining breath. Not a sign of rejection. It’s a miracle. At times I wonder how many other lives you saved... Bless you and your family.

Will continues to fight for national reform in tribute to his donor. This boy saved Will’s life. If not for his family, my family would have been drowning in a similar black abyss this Christmas. You saved us from a lifetime of despair. You saved our son. Thank you.

Collectively donor families have saved thousands of families all over Australia. The reality is generous donor families are grieving this Christmas. I hope the knowledge their decision prevented other families from burying loved ones gives some comfort.

These people are the true heroes of organ donation and transplantation.

Will began a campaign in June, launching his “A Gracious Gift” video on YouTube, believing the answer to the donor crisis was increased awareness. Since then we have experienced harsh enlightenment.

In August Will was transported by ambulance from St Vincent’s Hospital to RPA to sit on a SAV’D panel with transplant specialists, a beautiful donor family representative and a grateful liver recipient. Representatives of the Australian Organ and Tissue Authority and Donate Life were present. That night Will chose to launch the advertisement, its creation and network distribution further proof Australia wants a solution. Please take the time to read the open letter from Mat Baxter on Mumbrella. William passionately described the harsh message was not aimed at you, the Australian public, but at those who control and defend a failing organ donation system. I quote Will, “anything other than world’s best practice is unacceptable. I’m sure we can all agree on that.”

Other tragic victims of this less than adequate system are some individuals who in the past refused consent. The fact we have such a substantial refusal rate in Australia indicates something terribly wrong is occurring, or not occurring, when the time comes when there is a rare organ donation opportunity. Failure within the hospital system at this pivotal time is responsible for some families becoming innocent victims of regret in latter years. I hope this Christmas you too will find peace.

Did Will do all this for self interest or altruism? This question has been posed to Will. The answer is evident. Will, having received his gracious gift, has been advised by many to step back, smell the roses and focus on his rehabilitation, to heal physically and emotionally. For the sake of humanity he can’t. He knows too much to condone the status quo. He understands not all people in end stage organ failure can be saved, but he knows a proven solution was given to the Federal Government in 2008 and it has not been implemented expediently, resulting in devastating human suffering and death, some of these our friends.

Last month a record number of donor families gave their consent to organ donation and transplantation, 45 donors. Whether this substantial increase resulted from increased identification of potential donors or an increased consent rate is not known. Perhaps Will’s courageous endeavours initiated discussion. Life and death are the only constants in this life yet death is a subject rarely discussed.

I’d like to sincerely thank the physicians, lead by the humane Professor Alan Glanville and the entire surgical team whose professionalism and expertise saved William’s life. We are also indebted to the registrars and interns, our doctors of the future, the dedicated and compassionate cardio thoracic nurses on Level 10, the specialist transplant triage nurses and educators, the social workers, the pastoral care, the ward staff, the cleaners and the smiling faces on the front desk; I am eternally grateful to you all. And special thanks to a person I’ll never know, the donor coordinator who gained consent from William’s donor family in their darkest hour. May you all enjoy Christmas and the privilege of a happy, healthy 2013.

In time I will share our family’s journey through a mother’s eyes, and as you read I hope you too, will gain more understanding of the facts, and when the time comes, stand alongside us and say, enough.

This Christmas be reminded of love and giving, intrinsic in our donor families.

Find Will on Twitter and Facebook.

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Read other stories here.




The Waiting Game

Tuesday, November 20, 2012

In the first of our community blog posts, Peter of @peters_liver tells his story. Peter is an Australian Federal Police officer and a clean living, yoga loving husband and father of three young girls. He is waiting for a liver transplant and has been for over a year.

 Peter and his family

In October last year I was busy working as well as helping my yoga teacher by teaching some classes while he was leading a retreat in Bali. In short, I was active and although I felt a little tired at times I chalked it up to being busy.  Then on 18 October a good mate said, “I don’t want to worry you Peter, but you look a bit yellow”. 

I had experienced some stomach cramping in the month preceding but never believed it was my autoimmune condition, primary sclerosing cholangitis (PSC), attacking my common bile duct. Why would I? My specialist had only recently completed a battery of tests, which concluded the condition was there but not doing a great deal.

I promptly returned to see my specialist, who announced as I walked into his office, "Yes. You are yellow." We discussed the possible causes with the most likely being just a minor infection that antibiotics will clear up. To be sure, my specialist sent me off for an ultrasound. I knew it was something more when the radiographer called a colleague to have a look. Essentially they had lost sight of my bile duct.  

The next day I was directed to present myself at emergency for urgent and more detailed testing. Things rapidly got worse and a scheduled procedure got more complex until, at the last minute, it was cancelled so I could be transferred to a specialist hospital for the purposes of a liver transplant ‘work up’. Part of that procedure would be to check for malignancy in my duct when they tried to clear the blockage. If there was malignancy then nothing more could be done and I would not be placed on the transplant list.

I spent about seven weeks in hospital with temperatures pushing as high as 40 degrees. My wife visited virtually every day. The due date of our third child was getting closer and closer.

The first procedure to insert internal drains and relieve the built up bile and associated infection failed. They simply could not pass the drain piping through my busted duct, it was shut too tight. They scheduled me for a second procedure which was successful and ended with three external drains inserted through my skin and down my duct with the external end attached to a bag strapped to my leg. One year on and I still have those drains and bags on my legs.

On 23 November 2011, I was still in hospital when my wife went into labour.  A nurse was attending to my drains to get me ready for an hour’s hospital leave to be present for the birth when I heard Nadia had been born. I was on the telephone to my sister who was with my wife. I had missed the birth. Truthfully, the birth would have been painful for me. My stomach hurt, it hurt when I moved and if I laughed or if I cried, and both would have occurred had I been at the birth. I got there half an hour late and was so tired within half an hour that I had to leave.  The photo above was taken the next day when I still looked yellow.

In 2012 I have been admitted to hospital about seven times with each admission lasting about one week. Leaving for the hospital and saying goodbye to my three young girls, Anna, Alissa and Nadia and my wife Elena is always difficult. Doctors have made it clear that fevers and the associated septicaemia is one of the things that could cause me to die.

Trying to plan each day can be a challenge. There have been times when my drains leak so much that I have needed two nursing visits a day for dressing changes.  Being on the transplant list means I always need to be within four hours of Perth, but leaking like a sieve and spiking fevers makes doing anything, let alone a short holiday escape with family, very difficult. My wife has been wonderful but there is no doubt this is a challenge for her. Aside from daily activities that I can be too sick or tired to help with, she used to travel overseas each year, with our daughters, to visit her mum. That didn’t happen last year and a question mark remains if it will happen this year. I know that decision is going to be difficult for her.

Twelve months have passed since I was placed on the liver transplant list and I continue to wait and hope that some stranger’s incredible act of generosity by electing to be an organ donor will turn my life back around and enable me to spend many more years with my family.


Follow Peter on twitter @peters_liver

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ShareLife Community

Thursday, November 15, 2012
We are launching the ShareLife community blog in November 2012. Please get in touch if you have a post you'd like to share relating to organ donation and transplant.